The Phenomenon of Living With Dying: A Qualitative, Heuristic Study of The Hospice Team's Perspectives - Thesis by Malini Mundle

THE PHENOMENON OF LIVING WITH DYING IN TERMINALLY ILL CANCER PATIENTS
A A QUALITATIVE, QUALITATIVE, HEURISTIC HEURISTIC STUDY STUDY OF OF THE THE HOSPICE HOSPICE TEAMS TEAMS PERSPECTIVES PERSPECTIVES MALINI MALINI MUNDLE MUNDLE
GRADUATE GRADUATE SCHOOL SCHOOLATENEO ATENEO DE DE MANILA MANILA UNIVERSITY, UNIVERSITY, 2001 2001
COVER: STAINED GLASS ART BY THE AUTHOR
THE PHENOMENON OF LIVING WITH DYING IN TERMINALLY ILL CANCER PATIENTS: A QUALITATIVE, HEURISTIC STUDY OF THE HOSPICE TEAMS PERSPECTIVES
A Thesis Presented to the Faculty of the Graduate School Ateneo de Manila University
In Partial Fulfillment of the Requirements for the Degree Master of Arts
by Malini Mundle 2001
For more thoughts on life and death, living with the dying and palliative care you can visit www.malinimundle.com
ii
The thesis entitled:
submitted by Malini Mundle, has been examined and is recommended for Oral Defense.
________________________________ ALMA S. DE LA CRUZ, PhD Officer-in-Charge Department of Psychology
________________________________ MA. TERESA G. TUASON, PhD Adviser
_________________________________ JOSE M. CRUZ, SJ, PhD Dean School of Social Sciences
Comprehensive Examinations passed: 09 and 16 May, 1998
iii
The Faculty of the Graduate School of the Ateneo de Manila University accepts the thesis entitled:
submitted by Malini Mundle, in partial fulfillment of the requirements for the degree of Master of Arts, major in Psychology.
_________________________________ ISABEL E. MELGAR, PhD Member
__________________________________ DOMINIK GSS, PhD Member
_________________________________ PATRICIA C. DOMINGO, MA Member
___________________________________ MA. TERESA G. TUASON, PhD Adviser
____________________________________ JOSE M. CRUZ, SJ, PhD Dean School of Social Sciences
Grade: Very Good Date: 26 May 2001
iv ACKNOWLEDGMENTS
I acknowledge the resilience and courage of my mother, Usha Shukla, and all the patients who touched my life and enriched me. I remember you. My heartfelt gratitude and appreciation also go to the following persons and institutions that contributed in important ways to the realization of this thesis: John Shukla, my father and friend, for your love, support, and involvement in the hospice; Sudipto, my husband, for the great insights and encouragement; Sreeti, my daughter, for being there for me, it was great studying together; Poochi, for the unconditional love and refreshing walks; Teresita, Mila, Nanette, and Robert, salamat for your valuable support. The Psychology Department faculty--Marivic, for your advice in the early stages of this thesis; Tes Tuason, for the eureka!--the light at the end of the tunnel, and for guidance into the world of qualitative research; Sheerin, for the clarity and generosity of spirit. I am delighted to know you. Truly, through Him, all things are possible. The hospice facility, for consenting to this study; the Sisters of the Holy Cross, Srs. Francesca, Felicitas, Lima, and Rose, for your training, supervision, and emotional support; Dr. Aggarwal and Dr. Namrata, for the encouragement and support; the social workers, especially Mrs. Asha Adlakha, Major Malik, Mrs. Sunita Suri, and Mrs. Jain, and all the nurses aides for sharing your valuable experiences, it is an honor to be part of the team. Shikha, Harmeet, Renee, Prita, Madhu, and Rita, for the friendship, moral support, help with focusing on reality and for calming my stress and sometimes despair in the course of this thesis; Devi, for guiding and protecting me; and Shubhendu for the candlelight conversations about this study and about life. Salamat and love.
v TABLE OF CONTENTS Page ACKNOWLEDGMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . LIST OF TABLES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . LIST OF FIGURES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ABOUT THE AUTHOR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . THESIS ABSTRACT . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Chapter I. INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Purpose of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Background of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . History of Cancer and Psychology . . . . . . . . . . . . . . . . . . . . . . . . . . History of Hospice and Palliative Care . . . . . . . . . . . . . . . . . . . . . . . The Modern Hospice Movement . . . . . . . . . . . . . . . . . . . . . . . . . . . Hospice in the Asian ContextIndia . . . . . . . . . . . . . . . . . . . . . . . . . Review of Related Literature . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Living With Dying . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Quality of life Issues and Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . Magnitude of Cancer and Psychosocial Distress . . . . . . . . . . . . Inpatient Hospice Care for Terminally Ill Cancer Patients . . . . . Coping With Living With DyingPatients, Families, and the Hospice Team. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Tasks of Living With Life-Threatening Illness . . . . . . . . . . . . . Palliative CareHuman and Professional Tasks . . . . . . . . . . . . . . Dimensions of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Physical Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Psychological Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . Counseling Terminally Ill Patients . . . . . . . . . . . . . . . . . . . . . . . Social Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Spiritual Aspects of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Statement of the Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Significance of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2 3 4 6 7 11 13 13 18 20 22 24 27 34 36 36 38 40 45 48 50 51 iv viii ix x xi
II.
METHOD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Metamethodological Paradigm . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . Qualitative Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Constructivist Paradigm . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Heuristic Inquiry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
vi 54 54 54 55 58
Researcher as Instrument . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Procedure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Entry Into the Field . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Data Sources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . In-Depth Interviews . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Participant-Observer Role of Researcher: Biases and Assumptions . Data Collection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Data Analysis and Writing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . III. RESULTS. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . A Creative Synthesis of the Phenomenon of Living With Dying in Terminally Ill Cancer Patients in Hospice . . . . . . . . . . . . . . . . . . . . . The Essence of the Phenomenon of Living With Dying . . . . . . . . . . Quality of Life Themes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . A Developmental Model of the Phenomenon of Living With Dying in Hospice Patients . . . . . . . . . . . . . . . . . . . . . . . . . . . An Exposition of the Quality of Life Themes . . . . . . . . . . . . . . . . . . Limitations and Control . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Vulnerability and Resilience . . . . . . . . . . . . . . . . . . . . . . . . . . . . Individuality and Community . . . . . . . . . . . . . . . . . . . . . . . . . . . Managing Psychosocial Distresses . . . . . . . . . . . . . . . . . . . . . . . Making Each Day Count . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Acknowledging the Horse on the Dining Table . . . . . . . . . . . . . An Interpretative Synthesis of the Phenomenon of Living With Dying . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . IV. DISCUSSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Quality of Life Themes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Limitations and Control . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Vulnerability and Resilience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Individuality and Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Managing Psychosocial Distresses . . . . . . . . . . . . . . . . . . . . . . . . . . Making Each Day Count . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
60 61 62 62 63 63 65 67 68 69 74
74 75 76 79 80 81 84 89 95 106 110 114 120 122 122 124 125 128 134
Acknowledging the Horse on the Dining Table . . . . . . . . . . . . . . . . Other Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Implications of the Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Limitations of the Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
vii 136 140 142 145
V.
SUMMARY AND CONCLUSIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
147 158 160 172 172 175 177 178 186 197 209 213
REFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . APPENDIXES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . A. The Inpatient Hospice Facility, New Delhi, India . . . . . . . . . . . . . . . . . B. Standards of Hospice or Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . C. The Interview Guide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . D. Sample of an Interview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . E. Instrumental Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . F. Patterns and Themes of the Sample Interview . . . . . . . . . . . . . . . . . . . . G. Summary of the Patterns and Themes of the Sample Interview . . . . . . . H. My Personal Journey as a Counselor for Hospice Patients . . . . . . . . . . .
viii
LIST OF TABLES
Table 1.
Page Phases and Tasks in Living With Life-Threatening Illness: A Guide for Parents and Caregivers (Doka, 1993) . . . . . . . . . . . . . . . . . . . . . 29
ix
LIST OF FIGURES
Figure 1. 2. 3. The living-dying interval (Pattison, 1977) . . . . . . . . . . . . . . . . . . . . . . . . . . .
Page 28
The experience of dying (Pattison, 1977) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 A developmental model of the phenomenon of living with dying in hospice patients. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80
x ABOUT THE AUTHOR
Malini Mundle is a counseling psychologist who has done bedside counseling and therapy for over a decade with individuals who are terminally ill and with their loved ones and care givers. Her thesis, The Phenomenon of Living with Dying in Terminally Ill Cancer Patients: A Qualitative, Heuristic Study of the Hospice Teams Perspectives, explores the challenges in the last stage of life.
Care giving for my terminally ill mother brought me face to face with psychic pain, physical suffering and emotional trauma. I suffered with her. What held me together and encouraged an active participation to improve her quality of life was an absolute conscious denial of her imminent death. This also led to an inauthentic engagement. I could not witness with her this last intense period of her life, compromised with suffering. Her legacy to me was the challenge of being fully present not just for patients physical and emotional needs but to recognize that an integrated, honest commitment was imperative during the living with dying stage of life.
Subsequently I did an MA in Counseling Psychology, with a focus on seminars and courses and practicum that trained me to be a palliative care giver. During this time I counseled patients with cancer in hospitals and hospice and understood that just as an epileptic is really a human being who has epilepsy so also a cancer patient is an integrated being with the additional burden of cancer and dying. Their needs, desires, identity, joys and sorrows, fears are no different to those of us who do not face our mortality so starkly.
This thesis is the culmination of years of engagement with people who suffered terminal illness, who wrote or told their stories, and gently acknowledged their living with dying, putting the knowledge aside to communicate, introspect, and share immense love and the joy and pain. It has been an enriching experience to acknowledge mortality and still witness with individuals who live with dying. Their courage, endurance and resilience are an example for all the living who are also dying.
xi THESIS ABSTRACT Title: The phenomenon of living with dying in terminally ill cancer patients: A qualitative, heuristic study of the perspectives of the hospice team. No. of pages: Researcher: Adviser: Subject Area: 219 Malini Mundle Ma. Teresa G. Tuason, Ph.D. Counseling Psychology.
Year: Degree conferred:
2001 M.A.
Statement of the Problem Main Problem: This study sought to discover the essence of the phenomenon of living with dying in terminally ill cancer patients through the perspectives of the hospice team and to understand hospice patients coping styles and patterns of adjustment to the physiological and psychosocial distresses and predicaments that impact on their quality of life. Sub Problems: Coping with living with dying is a challenge for all those who are drawn into such situations. The hospice teams experiences, skills and resources in caring for terminally ill patients and coping with the stresses are also investigated. Procedure Twelve members of the hospice team (including the researcher) were selected through purposeful, intensity sampling to provide information-rich cases from which one could learn a great deal about issues of central importance to the purpose of the research. Data was gathered through the taping of in-depth qualitative interviews with the help of open-ended questions regarding the problem Treatment of data The extensive descriptions of and insights into the phenomenon were treated to five phases of heuristic analysis: immersion, incubation, illumination, explication, and creative synthesis that led to the discovery of vivid patterns of connection in experience and descriptions of themes and patterns of living with dying. The analysis reached the level of structural organization implied by the research problem, which was then communicated in a creative synthesis of the depiction of experience of living with dying in terminally ill cancer patients and the hospice team. Findings The essential features of the phenomenon of living with dying are described using a developmental model that illuminates 6 Quality of Life themes. In the transition from curative treatment to palliative care patients physiological and psychosocial needs are paramount to compromising quality of life and the themes that predominate this acute crisis stage are
xii Limitation and Control, Vulnerability and Resilience, Individuality and Community. Loss of control, helplessness and isolation can compromise coping and adjustment, and quality of life unless patients receive attention and recognition of their multiple needs and concerns. In the chronic living-dying phase, Managing Psychosocial Distresses highlights patients capacity to share their problems and concerns, gain new perspectives and cope with or let go of them. Making Each Day Count by searching for purpose and meaning in life is the theme that dominates when emotional adjustment, dignity and self-esteem is enhanced through acknowledgment and recognition of their experience, courage and endurance. Meaningful activities and hope make life worthwhile even in the face of death and subdue distress and suffering. Although awareness of death underlies the phases of living with dying in this developmental model, most patients prefer not to think about it because living and facing death at the same time is difficult and they need time to adjust. They live day-to-day in hope and Acknowledge the Horse on the Dining Table realistically and fearlessly in the terminal phase of life, nearer to death. Conclusions An individual with a life threatening illness who is in the process of dying, is above all else a person, a living human being with distinctive challenges because the pressures of dying often underscore the preciousness of living. However despair, depression and anger is not significantly evident. Each has broad range of needs, fears and concerns, hopes, joys and sufferings and is a complex and unique entity with interacting physical, psychological, spiritual and social dimensions, which can be just as powerful and significant as physiological distress. For dying patients the comprehensive palliative care in hospice makes the difference between another good day of living and another terrible day of dying. They live peacefully, free of pain and symptoms in the comfort of the safe refuge of the hospice amongst a community of fellow sufferers and the team. When death challenges the values of life, the terminally ill realize the importance of maximizing quality of living. Empathizing with the angst they face and reflecting and meditating along with them as they examine their lives provides the opportunity to reconstruct and gain new perspectives on their experiences. Meaningful activities and distractions are imperative to subdue distress and suffering. It is psychologically adaptive to acknowledge death in the terminal phase of life. Recommendations Terminal illness, with advanced progressing cancer disease is not just a biomedical problem. Awareness of the difficult transition from curative treatment to palliative and supportive care, and an understanding of the complex interactions between the physical, psychological and social sources of distress and disabilities can significantly influence quality of life for patients. The findings can be used to develop a comprehensive program of physiological and psychosocial care with the aim of empowering the dying patient and making him the center of energy in his changing world at home or in hospice. The findings can also emphasize the urgent need for more facilities for comprehensive care.
xiii Research or programs for the terminally ill in hospice must focus on specific quality of life issues in all dimensions of care as they relate to emotional adjustment. An important finding suggests that patients are deeply affected by death in the hospice. Follow-up research with patients themselves would promote a better understanding of their needs at this time. An important practical implication of this research is the question--Is it really desirable to talk about death, to make patients realistically face it so that they can plan comprehensively for death in the face of death? The findings indicate that a perception of control over illness is associated with less depressive symptoms, less anxiety about death and better psychological adjustment. Realistic acceptance is associated with more comprehensive practical planning about death, but leads to a sense of hopelessness This research indicates that it may be psychologically adaptive to realistically accept death at the advanced stages of progressive disease. In the chronic living-dying phase meaningful activities and distractions and a sense of purpose in life helps to subdue suffering and distress. Terminally ill patients at home, or in hospice would cope better if they are included in the day-to-day life around them and are active participants rather than passive victims of their circumstances. They would then be really living not waiting to die. Family members and caregivers can suffer emotional distress because of the inherent stresses of terminal illness. Workshops and support groups incorporating the findings of this study, and other literature, can provide a valuable platform for sharing distresses, and understanding resources and skills to effectively assist those in the process of living with dying.
CHAPTER I
INTRODUCTION
"It is not really the dying that is hard; dying takes no skill or understanding. It can be done by anyone. What is hard is living--living until you die. . . . " Kbler-Ross (1986)
A young nurse who was dying wrote, "The dying patient is not yet seen as a person and communicated with as such. He is a symbol of what every human fears and what we each know, that we too must someday face. . . . But for me, fear is today and dying is now. (cited in Kbler-Ross, 1986, pp. 25-26). Her essay, Death in First Person, is addressed to fellow nurses who are caring for her. To them she says: Is it because I am a student nurse myself, or just a human being, that I sense your fright? And your fears enhance mine. Why are you afraid? I am the one dying. I know you feel insecure, don't know what to say, don't know what to do. But please believe me, if you care you can't go wrong. Just admit that you care. That is really for what we search. We may ask for whys and wherefores, but we don't really expect answers. Don't run awaywaitall I want to know is that there will be someone to hold my hand when I need it. I am afraid. Death may get to be a routine to you, but it is new to me. You may not see me as unique, but I have never died before. To me that's pretty unique. . . . I have lots I wish we could talk about.
It would not take much more of your time. If only we could be honest, both admit of our fears, touch one another and cry together. . . . just person-to-person, then it might not be so hard to die. (p. 25) This dying nurse expresses eloquently that she simply needs to be cared for as a living human being with hopes and fears; and she seeks to have meaningful, compassionate contact and support so that it might not be so hard to die. As a caregiver herself she empathizes with the fears, discomfort, and insecurity of her caregivers and eases their concerns about responding to her questions and doubts. She emphasizes that it is just the caring, being present and sincere that is essential.
Purpose of the Study
The researchers keen interest in this study was to understand: What does a person who knows she is dying experience? How does she handle, cope with, and adjust to day-today living in the face of death? What goes on? What does she need from others in her helpless state, in pain, loneliness, and despair? This led to an intense curiosity about the phenomenon of living with dying among terminally ill hospice patients--an experience that begins when life can no longer be preserved. Subsequent training in hospice counseling and work at an inpatient hospice facility as a member of the multidisciplinary team instigated this inquiry into the experiences of patients living with dying in hospice and the related quality of life issues. Thus, the purpose of this study was to discover the essence of the phenomenon of living with dying in terminally ill cancer patients through the reflections, experiences, and essential
understandings of the multidisciplinary team who are intensely exposed to this phenomenon in their day-to-day work with patients in the hospice facility. The perspectives of the hospice team were sought on the following issues: (a) their understanding and insights on how terminally ill cancer patients experience the phenomenon of living with dying, (b) their perspectives on the physiological and psychosocial distresses and predicaments that impact on the quality of life of these patients, (c) their observations and views on the coping styles and patterns of adjustments of hospice patients in dealing with these distresses, (d) the skills and resources most helpful to caring for those coping with dying, and (e) the team members approaches to coping with the stress of caring for patients who are dying.
Background of the Study
Awareness of the phenomenon of living with dying comes from the researchers personal experience with a terminally ill family member. The lack of control over her bedridden body and life and the accompanying physiological and psychosocial stress and distress made her mother feel vulnerable and helpless. She often expressed frustration, anger, grief, and became withdrawn and quiet at times. For a long time, the researcher remained in denial of her mothers terminal condition and imminent death while actively participating in fruitless efforts to heal her. This, however, prevented any real communication about the terminal condition and further took away her mothers sense of control of her remaining life. In retrospect, the researcher felt that with appropriate multidisciplinary help to deal with all the physical pain, disabilities and symptoms, as well
as the psychological and social predicaments, her mothers quality of life would have been enhanced. The researchers intense interest in the phenomenon of living with dying stemmed from this experience and led to an inquiry into questions about hospice care, the physiological, psychological and emotional distresses and the social and interpersonal needs of dying persons in this devastating situation. Questions about what caregivers--family and friends as well as professionals and social workers can do to enhance the quality of life of terminally ill cancer patients in hospice resulted in training in hospice counseling as part of the practicum requirement of a postgraduate degree in Counseling Psychology. Subsequent research into the field of cancer and psychology led to the realization that terminally ill cancer patients suffered severe psychological and social disruptions along with physiological suffering that also needed attention. Medicine could no longer solely focus on the biological and physiological aspects of the diseases of cancer. It must also address the psychosocial aspects through the establishment of palliative and hospice care for cancer patients living until death with progressive degenerative disease.
History of Cancer and Psychology
Derogatis (1986) in Psychology in Cancer Medicine: A Perspective and Review, examined the interaction between the fields of psychology and cancer, and reviewed pioneering efforts in the growth of psychosocial oncology. Astute clinicians have observed a substantive relation between cancer and the psychological features of its victims for centuries (Goldfarb, Driesen, & Cole, 1967). Evans (1926) reported with a sample of a hundred cancer patients, a prevalence of a sense of
personal loss. In the first half of the twentieth century, research focused on cancer and psychology from the viewpoint that psychological status was predictive of cancer. LeShan (1959) reviewed this research literature and concluded that characteristics of hopelessness, loss, and depression emerged as predictors of cancer patients. During the 1950s there was a move to help cancer patients cope with emotional distress and adjust to their changing circumstances, through the initiation of self-help support groups. These groups provided information, advice, and socioemotional support to cancer victims (Wolfe, 1956). Cancer survivors formed other groups at this time to help patients adjust to their illnesses by providing much needed social support (Lasser, 1972). Between 1950 and 1970, psychology was still not systematically integrated into clinical oncology programs, although substantial psychological research activity was under way (Derogatis, 1986). Initial reports suggest that cancer patients' psychological characteristics were systematically related with length of survival. Individuals who rapidly succumbed to the disease were described as polite, cooperative, and unable to express negative affects particularly hostility. Patients who survived longer were described as emotionally expressive, and in some cases, bizarre, with significantly higher levels of anxiety, hostility, alienation, and denial (Bacon, Renneker, & Cutler, 1952; Blumberg, West, & Ellis, 1954; Derogatis, Abeloff, & Melisaratos, 1979, as cited in Derogatis, 1986). Derogatis (1986) reiterates that though many investigators (Bahnson & Bahnson, 1966; Kissen, 1966; Le Shan, 1956; Schmale & Iker, 1964) perceived an association between psychological status and the emergence of cancer, it is now being considered that these observers may have had difficulty discerning the antecedent from the consequent conditions. Specifically, they may have mistaken emotional responses elicited by the
knowledge of having cancer as being the cause of the disease. In the 1970s a systematic cancer control effort was initiated and it stimulated the first coordinated research on psychological and behavioral issues in cancer patient care (Derogatis, 1986). For instance, the first conference on psychosocial aspects of cancer was held in 1975. In the same year, the American Psychological Association (APA) created its Section on Health Research, and in 1979, its Division of Health Psychology was formed. By 1980, the American Cancer Society had taken the lead in the developing field of psychosocial oncology; and in 1983 the Working Conference on Methodology in Behavioral and Psychosocial Cancer Research was convened by this society. Death awareness developed in the early 1960s and continued into the 1970s. Pioneering work on the hospice concept and palliative care for terminally ill patients occurred then. At around the same time, Kbler-Ross was developing her five-stage model of coping with death and dying and was providing valuable insights into the psychology of dying (Schnwetter, 1995). Since this came at a time when death was impersonal and occurred in sterile institutional settings, the credibility of the hospice concept grew.
History of Hospice and Palliative Care
Psycho-oncology, the modern integration of psychology and cancer medicine had its beginnings in the late 60s. This scientific discipline combines the study of the biological and psychosocial aspects associated with cancer. It is concerned with quality of life issues and psychological well being in the oncology setting (Kidman & Edelman, 1997). The scope of psycho-oncology is broad, and includes prevention, screening, and diagnosis; management, surgery, radiotherapy, and medical oncology; survivorship, progression,
palliative/hospice care, and bereavement. This interface has led to the development, albeit very gradually, of psycho-oncology divisions in hospitals in the West with psychologists as their leaders. The 1980s and 1990s have witnessed growing research activities and investigations in the field of psycho-oncology with the American Cancer Society leading the field. The National Hospice Organization of the United States was established in 1978. Holland (1995) discussed the significant need in psycho-oncology for continuing efforts to assure that patient-centered care which incorporates quality of life are made available through multidisciplinary efforts. Even as the thrust towards prevention of cancer has accelerated, large numbers of people around the world are diagnosed and must cope with severe disease, treatment, psychological and social disruptions, and the reality of a shortened life span.
The Modern Hospice Movement
The initiation of the modern hospice movement in 1967 was a direct response to the concerns of psycho-oncology about the physical and psychosocial distresses and quality of life issues of patients with progressive advanced cancer disease (Derogatis, 1986; Smith, 1985). Cicely Saunders opened St. Christopher's Hospice in London in that year. Effective symptom control, care of the patient and family as a unit, a multidisciplinary team approach, the use of volunteers, a continuum of care that included the home setting as well as followup with family members after the patient's death were emphasized. The hospice movement has shown that cancer symptoms, especially pain, can be controlled without distressing side effects. Open communication and discussion about terminal illness would benefit the
patient and caregivers (Smith, 1985). The modern hospice movement focuses on the physical, psychosocial, and emotional symptoms and needs of the patient rather than on the terminal disease. An emphasis on "total" pain control and management of symptoms that occur due to the disease of cancer comprise the primary and ongoing focus of care, based on each persons needs, with relief of suffering as the dominant objective (Schnwetter, 1995). Patients and families often require intensive psychosocial and spiritual support and counseling to cope with the significant challenges and transformations that are presented as the patient's illness progresses. These needs are greater than those that can be addressed effectively in the physician's office or outpatient centers or by the existing home health care system (Kinzbrunner, 1994; Schnwetter, 1995). Hospice care is appropriate for any patient with a terminal illness (75% of hospice patients have cancer) with a prognosis of death within approximately six months. The patient has eschewed futile or additional treatment aimed at curing the disease, though radiotherapy, chemotherapy, and surgery has a place in palliative or hospice care if the symptomatic benefits of treatment outweigh the risks and if the goal of the particular therapy is symptom relief (Schnwetter, 1995). In 1993, the National Hospice Organization, supported by the World Health Organization, issued the Standards of a Hospice Program of Care, which encompasses the philosophy of hospice care. Death is seen as a natural part of the life cycle. When it is inevitable, hospice will not seek to hasten or postpone it. Pain relief and symptom control are clinical goals. Psychological and spiritual pain is as significant as physical pain, and addressing all three requires the skills and approach of a multidisciplinary team. Patients,
their families, and loved ones are the unit of care. Bereavement care is critical to supporting surviving family members and friends. Care is provided regardless of ability to pay. The National Hospice Organizations (1994/1995) Standards of Hospice or Palliative Care emphasizes the hospice philosophy and its central principles (see Appendix B). The focus of this philosophy is to maximize quality of life and these are the standards underlying care of terminally ill cancer patients at the inpatient hospice facility in Delhi, India. One of the most difficult times in the care of a cancer patient occurs during the transition from traditional curative treatment to palliative and supportive care (Miller, 1994). When cure is no longer possible and when disease burden causes undue patient suffering, a peaceful and comfortable terminal period and death may be recognized as valid goals of modern hospice care. Schnwetter (1995) and Saunders (1990) emphasized that effective treatment of the patient's physical symptoms as well as the emotional, social, and spiritual needs requires the diverse skills of a multidisciplinary team of caregivers. The hospice program was a direct response to the realization that the care provided was inadequate and inappropriate, especially in hospitals. The comprehensive care for terminally ill persons, as it relates to physical, psychological, social and spiritual needs of the patient and family is the principle component of the hospice philosophy (Smith, 1985). This emphasizes the importance of the quality of life and autonomy for the dying person and recognizes that even when curative efforts fail, appropriate treatment of care is still required. The ideal multidisciplinary team includes (Schnwetter, 1995; Saunders, 1993) physicians with palliative care training, nurses with experience and training in pain and symptom management, nurse-aides to attend to the physical hygiene and practical needs of
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patients, social workers, and psychologists with clinical experience and training for work with the terminally ill, spiritual counselors with education in pastoral counseling, social workers, a volunteer coordinator skilled in organizing and communicating, and other volunteers. Each member of the hospice multidisciplinary team initiates a trusting relationship with the patient and family. The team works together to develop a plan to guide the patient through a comprehensive case-management approach to care in the home setting or in a hospice, with the goal of enhancing quality of life for the dying patient. The World Health Organization (1990) defines palliative care as the active total care of patients whose disease is not responsive to curative treatment. It embodies the need for compassionate care directed at improving the quality of life for people with life limiting illnesses and providing support for patients and families as they incur multiple losses. Schnwetter (1995) clarifies that philosophically, the relief of suffering is the dominant objective of both palliative and hospice care and both may be provided along the continuum of care for cancer patients. However, hospice care is generally reserved for the latter segment of the continuum (near the end of life) and is designed to support the physical, psychosocial, and spiritual needs of patients near the end of life. Societal emphasis on the quality of life of patients with advanced cancer has had a significant bearing on the care of these patients. The growth of the hospice movement with such clear objectives acknowledges that terminally ill cancer patients distresses and quality of life issues are of paramount importance and everything that is possible must be done to ease the suffering of these patients as they live until they die.
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The provision of special places and special rituals of care for persons who are terminally ill is common among many cultures (Maddocks, 1997). What is new in the contemporary hospice movement is the close involvement of modern medicine. Until the latter part of the century, non-medical persons cared for dying people, or else care was subsumed within the institutions created to deliver curative medical care. Death was regarded as a failure, and care for dying persons was neglected in favor of those considered more likely to survive (Maddocks, 1997).
Hospice in the Asian ContextIndia
The antecedents for the hospice movement in India are found as early as the time of Emperor Asoka in India (d. 238 B.C.) (Davidson, 1988). Hindu pilgrims came to the river Ganges at Varanasi in hopes of dying there so that their ashes could be spread upon the most holy of waters and thereby escape, according to Hindu belief, the trials of rebirth and reincarnation. Sometimes the pilgrims would wait until they were infirm or too ill to complete their journey became stranded mid-journey and were attacked by bandits and others who took advantage of their vulnerability. Asoka established shelters for the pilgrims and their families. These hospices are believed to be the earliest evidence of institutional care for the dying in human history. Medicine in India and Asia has addressed the need for the skilled interventions of palliative and hospice care professionals since they offer an alternative to the otherwise negative message that nothing more can be done, delivered by doctors in the face of imminent death (McLeod, Glaetzer, & Maddocks, 1997).
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However, McLeod et al. (1997) discovered that admitting family members into hospices is considered a shame on the family because it implied that they did not want to look after the patient at home, and was tantamount to deserting the patient, or being unwilling to fulfill the obligation and duty of caring for them. McLeod et al. reiterate that Western ethical imperatives of truth telling and individual autonomy, within medicine may not be so easily accepted in Asia. To talk of bad things is to make their occurrence likely. According to McLeod et al., death and dying are clearly topics closely linked with bad luck. It has also not been regarded necessary or helpful to share a bad prognosis with the patient. In this context to discuss dying would be to wish it on the patient. In spite of sterling efforts by the World Health Organization (WHO) to encourage wider availability and use of simple opiates such as morphine for cancer pain, there remains in Asia a common official suspicion of them. The belief that opiates are addictive and can lead to abuse has led to official reluctance to license and make it easily available for cancer patients (Maddocks, 1997). In India, morphine can officially be administered in the hospital or hospice, making it imperative for patients in severe pain to leave their homes to receive this medication for relief of pain. Legislation on this issue is being changed gradually with the introduction of morphine patches (Aggarwal, 2000). The need for palliative care services in Asia has become imperative with the increase in cancer incidence. In India, hospice care has developed gradually in the different states and cities. India's first hospice, "a place of peace without pain, was started in Mumbai in 1986 (see Appendix A) by a Trust started at the initiative of a leading oncologist. Though influenced by the Western example, it has easily adapted with the cultural and religious needs of the Indian patient. This Trust opened two more hospices, one in Goa and the other
13
in Delhi, in 1994. An order of Christian nuns, has assumed the responsibility of running these three hospices. Fifteen years later, many groups and organizations have started hospices in various cities and states, and others provide home-care for terminally ill cancer patients. The establishment of the Indian Association of Palliative Care in 1994 has provided a firm base for Palliative Care in India. The 2nd International Hospice Conference and the 5th International Conference of the Indian Association of Palliative Care based on the theme Palliative Care Beyond 2000 was organized and hosted jointly by the Shanti Avedna Ashram Hospice Trust and the Indian Association of Palliative Care in 1998. Current issues in palliative care included workshops for nurses and doctors, and key sessions dealing with Psychosocial Issues in Palliative Care, Palliative Care in the Home, and Hospice and Palliative Care in AIDS.
Review of Related Literature
Living With Dying
Existentialist thinkers are impressed by the fact that despite advanced technological gains, the death rate hovers at a 100% (Rainey, 1988). With the distractions of daily life, however, most mortals live blithely untroubled with mortality. A few among us, at any given time, are not so distracted. These are the individuals who are caught acutely in the living-dying phase as Pattison (1978) aptly terms it. This period is characterized by the presence of incurable illness and death as a very real threat in the not-so-distant future.
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When does living with dying begin? Corr, Nabe and Corr (1997) draw attention to the fact that dying persons are living human beings and continue to be so when nothing more can be done to reverse a fatal condition, such as incurable cancer, and to preserve life. Dying is a special condition in living and one part of our experience of life and living. Death is the outcome of dying, not its equivalent. Thus, when does dying begin? When a fatal condition develops and is recognized by a physician, and when medicine can do nothing more to reverse that condition and preserve life, then dying begins. An individual with a life threatening illness or one who is in the process of dying is above all else a person, a living human being. There may be much that is distinctive or special about individuals with terminal illness who are dying, because the pressures of dying often underscore the preciousness of living (Corr et al., 1997). However, like all living persons, these individuals have a broad range of needs and desires, plans and projects, hopes, joys and sufferings, fears and anxieties. Death does not take place until life, living and dying have ended. It is a human experience and humans are not just objects of anatomy and physiology. In fact, each person who is dying is a complex and unique entity with interacting physical, psychological, social, and spiritual dimensions (Saunders, Baines, & Dunlop, 1995). Psychological difficulties, social discomfort, and spiritual suffering may be just as powerful, pressing, and significant as physical distress. Hence, as Kbler-Ross (1986) reiterates, dying is not difficult and takes no skill or understanding. It is the living until death, especially when it is imminent, that is hard.
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Carey (1974) designed a Living Until Death Program, a research project incorporated into a program of service at a General Hospital that continued for 8 months. Chaplains who were part of this program focused on helping terminally ill patients to live each day as joyfully and peacefully as possible by helping them and their families to deal with their feelings and bring comfort to each other. Only patients who were aware of the seriousness of their condition and the limited life expectancy were considered as candidates for this program. The terminally ill patient was defined as one who knows his death is probable within a year if the unwholesome condition persists and there is no cure. This quantitative research primarily examined factors that correlate with emotional adjustment. An emotional adjustment (EA) scale was designed to measure the extent to which the terminal patient was able to cope interiorly and exteriorly with limited life expectancy (Carey, 1974). Emotional adjustment included the concept of inner peace and self-possession and was not the same as resignation, acceptance, or despair of recovery. The questions measured the presence or absence of anger, guilt, anxiety, depression, and the ability of the patient to verbalize his feelings with family and friends. A discomfort scale of five items used in this study evaluated the patients amount of pain, disfigurement, dependence on others, and difficulty in eating and sleeping. Previous experience with dying persons was analyzed from the standpoint of whether or not the patient had ever talked frankly and openly about dying with someone else who knew he or she was dying; whether or not he was close to someone who accepted death with inner peace; and whether or not he had been close to someone who was angry or upset till the end of his life.
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Statistical analysis elicited important findings that are consistent with case studies and anecdotal information. The findings (Carey, 1974) suggest that dying patients should be allowed as much choice and control as possible over their lives and routines, and life should, as far as possible, be consistent with the life they led before their illness. This applies specially to their relationships with important people in their lives and being allowed to spend as much time as possible in familiar and comfortable surroundings. Families can help most by maintaining an emotional and social environment consistent with the patients past life style, where circumstances permit. Additionally physicians and nurses need to be honest yet reassuring with patients. Understanding the amount of pain and the patients experience of it can help to control it. Extreme pain prevents the patient from maintaining emotional equilibrium. Carey (1974) found that level of discomfort and being close to a person who was angry and upset were negatively related to emotional adjustment. Having been close to a person who accepted death with inner peace and discussing death with another dying person openly and frankly were both positively correlated to increased ability to cope with terminal illness. Intrinsically religious persons, who tried to integrate their beliefs into their life styles, had the greatest emotional adjustment. Other results of Careys (1974) study were that the most frequently expressed concern of dying patients was the fear of being a burden to others as well as separation from loved ones, and how they would care for themselves after the patients death. Some factors that were of importance in emotional adjustment were the ability to cope with stressful situations in the past; the feeling of having lived a meaningful and fulfilled life; a warm and
17
supporting relationship with ones spouse; hope of a joyful life after death; the ability to talk frankly about the meaning and consequences of ones illness; supportive, tactful explanations from the doctor; and a feeling of concern from ones children, family and close friends. Many patients expressed anxiety about the process of dying rather than what would happen after death, about how much pain there would be in the future and how they would cope with it, and about how dependent they would become and how much of a burden they would be on others. In evaluating this study, Carey (1974) concluded that the main challenges facing a terminal patient were, firstly, his choice of accepting or rejecting the reality of dying. Denial would involve the attitude that he is going to get better in spite of all information to the contrary. The desire to recover may be present even with acceptance. Secondly, the patient must find satisfactory meaning in his new life situation, in the pain, helplessness, changing relationships, separation, and losses. If the patient can find that his life still has value then he has acquired emotional adjustment whether he is in a state of acceptance of denial. Carey (1974) reiterated that the patient can be helped to see that there can be meaning and value simply in how he copes with suffering and living until death. It is the special context of those living persons who are closely approaching death that is the subject of this study. This study utilizes the perspectives, insights, reflections, and constructions of the multidisciplinary team of a hospice to make sense of, construct, and develop an understanding of the phenomenon of living with dying of cancer patients who spend the terminal stage of their lives in an inpatient hospice facility.
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Quality of Life Issues and Cancer Cancer, the second leading cause of death, is one of the most dreaded diseases because its victims face the possibility of a prolonged period of progressive physical deterioration and loss of function as well as the potential of unrelenting pain before they die. Moreover, the side effects of some treatments are often themselves serious sources of distress and discomfort. Much of the fear of cancer has to do with the dying processes associated with it (Corr et al., 1992). Dying trajectories in cancer can involve a long duration of suffering, pain and discomfort and a worsening of these difficulties with progressing cancer disease (Glaser & Strauss, 1968). Living until death for terminally ill cancer patients can be fraught with stress and poor quality of life. Levels of physical and psychological discomfort and distress reduce the level of emotional adjustment (Carey, 1974). The anxiety of being a burden on others, fear of intolerable physiological and emotional suffering, loss of control and hope, fear of death and increasing hopelessness, and loss of meaning all make day-to-day living in the face of death difficult to bear. A multitude of changes overwhelm patients suffering from cancer (Hinton, 1973). They experience pain, disfigurement, and deep concern over the future. There is loss of work role and fear of burdening and being dependent on others. Often people cannot handle the devastating prognosis and withdraw, and patients feel that they are not cared for as individuals any longer. Their self-concept, motivation, and sense of being-in-the-world are
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affected. A noticeable existential disruption is related directly to the disease (Andersen, 1992). Quality of life is the realization of one's emotional, intellectual, interpersonal, and general potential for satisfaction and happiness as a human being (Brodsky, 1988). Total fulfillment of potential is never expected but movement towards the goal is important. It is dependent on the way an individual adjusts to negative mood states, emotions and feelings, physiological distress, and psychosocial predicaments arising out of the burden of cancer. Quality of life depends on the quality of adjustment as applicable to each individual. Wellbeing, related to the concept of adjustment as self-fulfillment, is a subjective emotional state of positive affect, relatively low negative affect, and general life satisfaction or the deliberate movement toward the achievement of desired life goals and ways of being (Brodsky, 1988). The feeling that one can make choices and so control, at least in part, what happens in ones life, is an important part of well-being. Maladjustment arises from a distressing or burdensome life situation that leads to feelings of helplessness, misery, frustration, ineffectiveness, or having no purpose in life (Brodsky, 1988). For cancer patients, quality of life is dependent on the quality of coping and adjustment to the multitude physiological disruptions, pain, and negative mood states caused by cancer (Andersen, 1992). Many researchers as well as those caring for terminally ill patients have noted that the occurrence and progress of cancer is a major stressful event that exacts continual adjustments and compromises quality of life. (Andersen, 1992; Corr, Nabe & Corr 1997; Doka, 1993; Hinton, 1973, Kbler-Ross, 1986; Linn, Linn & Harris, 1982; Saunders et al., 1995; Schnwetter, 1995; Spiegel & Lazar, 1997; Taylor, Falke, Shopaw, & Lichtman, 1986; Telch & Telch, 1986; Walsh, 1994; Weisman & Worden, 1977).
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Current research indicates that the prevalence of psychosocial distress in cancer patients depends on many factors such as stage of disease, associated pain complications, disfigurement, the presence or absence of metastasis, physical performance status, and the chosen operational definition of disease (Derogatis, 1986). All these factors have a significant influence on the occurrence of psychosocial problems among cancer patients and there is now general support for the correlation between the magnitude of disease, treatment, and psychological and social distress (Anderson, 1992). Cancer is not one disease but several separate ones, each with multiple physiological etiologies and disparate outcomes (Andersen, 1992). There is not a prototypic "cancer patient." Given the heterogeneity of the diseases known as cancer, with the varying prognoses and treatment regimens there are markedly different expectations of psychosocial distress and mortality risk across a sample of cancer patients (Andersen, 1992). Classifying patients by psychological attitude and goals of the patient as well as by malignancy are necessary in making important treatment decisions or move to hospice care. Magnitude of Cancer and Psychosocial Distress Patients with localized cancer are in Stage I or Stage II at diagnosis and at low morbidity risk. Treatment is usually surgery, for example, in breast cancer and chemotherapy or radiation therapy. For this extent of disease, the prognosis is favorable. Seventy to 95% of people in this low risk category can survive for 5 years. Data suggest that when localized disease is controlled and recovery proceeds unimpaired, the severe distress of diagnosis dissipates and emotions stabilize by 1 year posttreatment (Anderson, 1992). This has been substantiated by large and well-controlled studies of low risk cancer patients with Stage I breast cancer (Bloom, 1987; Vinokur,
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Threatt, Caplan, & Zimmerman, 1989 as cited in Anderson, 1992) and Stage I and II gynecologic cancer (Anderson, Anderson, & deProsse, 1989; and de Haes, 1986; as cited in Anderson, 1992). Patients with first recurrence for an initial Stage I disease and diagnosed with regional disease are identified as Stage III, at moderate morbidity risk. Treatment is often a combination of surgery, radiation therapy, as well as chemotherapy. Prognosis is guarded with 40-60% expected to survive 5 years. Psychological adjustment is variable for this risk level. However, with time, emotional distress is reduced and adjustment is enhanced. Patients receiving chemotherapy report higher levels of emotional distress while in therapy. Anderson (1992) reports that a wide variety of outcome measures detected improvement. Forester, Kornfel, and Fleisss (1985) findings indicated that all patients improved with time. Telch & Telch (1986) confirmed a significant advantage for treated groups versus the no-treatment controls on most scales of the Profile of Mood Scale (POMS). Patients in all stages of rapidly progressive cancer or extensive metastases at Stage IV are considered in the high morbidity risk category. Treatment involves palliative care for control of pain and other symptoms. Prognosis is dismal at this risk level with only 415% expected to live for 5 years and between 15-40 expected to live for 1 year (Andersen, 1992). Individuals with rapidly progressing disease confront a time line of months, as survival for the next year is possible but unlikely. Active treatment cannot control the disease. This situation is devastating and the magnitude of distress with recurrence is greater than that found with initial diagnosis (Thompson, Anderson, & De Petrillo, 1992).
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Bloom (1987) reports that compared to patients at low and moderate risk, high risk patients with rapidly advancing cancer showed the greatest distress, and increasing physical debilitation and pain. Research with high morbidity risk patients (Spiegel & Bloom, 1983; McCorkle et al., 1989) confirms that whereas many cancer patients at low or moderate risk for adjustment difficulties may improve without intervention, the coping and adjustment problems of high-risk patients still worsen. The reasons stated for this more difficult trajectory is the existential distress that comes with cancer diagnosis, the shortened life span, the increased numbers and less controllable symptoms of disease, and the worsening of these difficulties with time. For these patients, social support from caregivers, compassion, warmth and palliative care becomes crucial. Inpatient Hospice Care for Terminally Ill Cancer Patients The most difficult time for cancer patients is when traditional, curative, medical therapies no longer offer benefit and when goals of treatment become palliative and supportive (Miller, 1994; Andersen, 1992). The focus of this research will be on the phenomenon of living with dying of patients who are at high morbidity risk, with Stage IV cancer disease. These patients have been recommended by doctors to the inpatient hospice facility in Delhi, India (see Appendix I) for palliative care, pain and symptom control, management and treatment of cancer wounds and physical debilitation, and care for the psychosocial and spirituals aspects of living with dying. Saunders (1990) maintains that the limited care facilities at home provide the least disruptive environment for dying persons. The environment at home makes it possible for the dying person to remain involved in family concerns and activities even though this may
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reduce when disease progresses. Additionally, the home environment provides time for family and interpersonal sharing, as the family is the primary care giver. However, as Saunders (1993) points out, the home is not always an option. The degenerative aspects of the disease and the need for strong narcotics that require supervision may necessitate admission to hospice in the final stages. Some patients may choose to be cared for in an inpatient facility because they may not receive adequate care from the family or because the burden of care may have become physically and psychologically draining for the family. In many cases, the patient may have no family to provide home care and the hospice volunteers and professional staff assume many of the familys roles. The success of these interactions depends on how effectively members of the multidisciplinary team become a community, united by a common purpose and a shared commitment to care for the terminally ill (Saunders, 1993; Smith, 1985). The added burden of the transition from home to institutional care is recognized and, as such, the hospice team makes every effort to minimize the negative effects of this move. Considerable attention is focused on the dying persons dignity, of which independence and control are key components (Smith, 1985). Living until death in an inpatient hospice facility could have a demoralizing effect because patients are exposed to the suffering and death of others with whom they form relationships. But Yalom (1995) has found that in an inpatient hospice facility, patients and their families are strengthened, encouraged and supported by each other as they deal with similar issues. One of the most important findings of Careys (1974) research study, The Living With Death Program, was that a person can prepare himself to cope with terminal illness by welcoming the opportunity to be close to someone who is presently facing death with inner peace. Talking frankly about death and dying helps both to sort out feelings and
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adjust emotionally. Sogyal Rinpoche (1992), in his work on living and dying, encourages an enlightened vision of death and dying so that issues about what can be done for the dying can be addressed. Rinpoche (1992) considers this pioneering work done in the hospice movement as a move in the right direction because it helps people to die with dignity. Coping With Living With DyingPatients, Families, and the Hospice Team Coping has been defined as constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person (Lazarus & Folkman, 1984; Monat & Lazarus, 1991). This definition encompasses both coping with living and coping with dying. The elements include a focus on the processes of coping and their changing character; coping as efforts and activity to manage perceived stressful demands and therefore becoming content to accept, minimize or avoid stressful demands; and coping as the response to demands that are taxing and exceed the resources of the person. Moos and Schaefe (1986) described five major sets of adaptive coping tasks that are in agreement with Lazarus et al.s (1984) view. The tasks involve understanding the meaning and personal significance of a situation, confronting reality and responding to the demands of the external situation, sustaining relationships with family members and others who may help in resolving the crisis and its aftermath, maintaining a reasonable emotional balance by managing upsetting feelings and preserving a satisfactory self-image, and maintaining a sense of competence and mastery. They further emphasize that a patients coping may focus on the cognitive appraisal of the situation, the problem itself or the emotional response to the problem and may sometimes include all three. All coping styles and postures depend on a background context (involving demographic and personal factors,
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event-related factors, and physical and social environmental factors), on the individuals appraisal of the situation and on the application of coping skills to adaptive tasks. Although cancer imposes particular stresses, individuals have their own susceptibilities and have certain tendencies to cope in their own special patterns. People, who are informed that they have a limited life expectancy, react in different ways. Some cope with the psychic pain such as anger, depression, fear, sorrow, or guilt and may adjust emotionally to the point that they live the final period of their lives in tranquility and wellbeing. Others, however, seem unable to handle this pain (Carey, 1974; Kbler-Ross, 1975). An integral aspect is an accurate understanding of the factors related to emotional adjustment of terminal patients. Carey (1974) emphasizes the importance of physiological pain and discomfort, spiritual attitudes and beliefs, and previous experience with dying persons as these affect adjustment. Ability to cope with stressful situations in the past, warm and supportive relationships, a feeling of having lived a meaningful and fulfilled life, and the ability to talk frankly about the meaning and consequences of ones illness all help to improve emotional adjustment. Reassurances about anxieties about the process of dying and future pain and being dependent and a burden on others can improve emotional adjustment. Kbler-Ross (1969), in her stage theory of coping with dying elaborated on the different defenses used by terminally ill patients. Her model identified common patterns of psychosocial responses to difficult situations--denial, anger, bargaining, depression, and acceptance, and Kbler -Ross (1969) drew attention to the human aspects of living with dying, to the feelings experienced by those who are coping with dying, and to the importance of addressing unfinished business. Doka (1996) and others suggest that, although many patients go through some or all of the stages of coping with dying (Kbler-Ross,
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1969), no one model of coping is inherently preferable. Lipowski (1970) distinguishes an individual's normal coping style that is the enduring disposition to use certain techniques, from the coping strategy actually employed by the sick person dealing with an illness. He has emphasized the use of cognitive coping styles where a terminally ill individual may either minimize the available information or focus on perceived dangers and reduce uncertainty with the use of psychological defense mechanisms (e.g., suppression, denial, dissociation, regression, sublimation, rationalization). This definition varies from that of Lazarus et al. (1984) which views coping as managing demands and involving efforts to face the stressful situation. Weisman (1984) noted that coping involves more than an automatic response or a defensive reaction. Task based models of coping consider that the dying person has the choice to take on a particular task. Coping can be a positive process that seeks to resolve problems or adapt to challenges in living unlike the posture of defense (Kbler-Ross, 1969) that channels energy into avoiding problems. Careys (1974) quantitative research study evaluates two main challenges facing the dying patient. One is his decision or choice to accept or reject the reality of dying, which involves denial and a firm belief that he will get better in spite of information to the contrary; and the other is the challenge of finding satisfactory value and meaning in his new life situation. Task-based models emphasize the work, not needs, that can be undertaken in coping to achieve what the terminally ill patient desires or requires. Additionally, Stedeford (1984) notes that a good model of coping with dying is one that throws light on challenges that arise from that which has already happened in dying, that which is in the process of taking place, and that which is yet to come.
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Tasks of Living With Life-Threatening Illness (Doka, 1993) Dokas (1993) model is inspired by and can best be understood considering Pattisons (1977) notion of the living-dying interval (see Figure 1) where the upper portion of the figure represents the overall situation, while the lower portion is a more specific diagram of the living-dying interval, the period between acute crisis knowledge of death and the terminal phase of actual death itself. This concept organizes the experience of coping with life-threatening illness and dying into an existential, temporal component, just as all human experience is encountered as sequential (Corr et al., 1997). Pattison (1977) further subdivides the living-dying interval into three phases (see Figure 2) called the Experience of Dying which include (a) an acute crisis phase associated with the diagnosis of a terminal illness and rising anxiety generated by the critical awareness of impending death, (b) a chronic living-dying phase with a variety of potential fears and challenges, and (c) a terminal phase organized around issues concerning hope and different types of death. Doka (1993) expanded on Pattisons (1977) thinking to construct the Phases and Tasks in Living With a Life-Threatening Illness which demonstrate that coping tasks differ in that period of time between the everyday, ordinary processes of living prior to the crisis knowledge of death and the point at which death occurs. The five phases in living with a life-threatening illness include: the pre-diagnostic, acute, chronic, recovery and terminal phases. The tasks of each phase are outlined in Table 1. Dokas (1993) intention in developing these lists of tasks is to set forth a schema that is sensitive to the many humanphysiological, psychological, social, and spiritualaspects of coping with life threatening illness.
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Crisis knowledge of death
Point of death
Potential death trajectory
Actual death trajectory
LivingDying Interval
Figure 1. The living-dying interval.
Peak anxiety Integrated dying Disintegrated dying Crisis knowledge of death Point of death
Acute Crisis Phase
Chronic Living-Dying Phase
Terminal Phase
Figure 2. The experience of dying __________________________________________________________________________ Note. From The Experience of Dying, by E. M. Pattison, 1977, New Jersey: Prentice-Hall, Inc. Copyright 1977 by Prentice-Hall, Inc.
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Table 1. Phases and Tasks in Living with Life-Threatening Illness: A Guide for Parents, Families and Caregivers (Doka, 1993)
Phases
Tasks
Prediagnostic
1. Recognizing possible danger or risk 2. Coping with anxiety and uncertainty 3. Developing and following through on a health-seeking strategy
Acute
1. Understanding the disease 2. Maximizing health and lifestyle 3. Maximizing ones coping strengths and limiting weaknesses 4. Developing strategies to deal with the issues created by the disease 5. Exploring the effect of the diagnosis on sense of self and others 6. Ventilating feelings and fears 7. Incorporating the present reality of diagnosis into ones sense of past and future
Chronic
1. Managing symptoms and side effects 2. Carrying out health regimens 3. Preventing and managing health crisis 4. Managing stress and examining coping 5. Maximizing social support and minimizing isolation (table continues)
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Table 1 (continued)
Phases Chronic 6. 7. 8. 9.
Tasks Normalizing life in the face of the disease Dealing with financial concerns Preserving self-concept Redefining relationships with others throughout the course of the disease 10. Ventilating feelings and fears 11. Finding meaning in suffering, chronicity, uncertainty and decline
Recovery
1. Dealing with psychological, social, physical, spiritual and financial aftereffects of illness 2. Coping with fears and anxieties about recurrence 3. Examining life and lifestyle issues and reconstructing ones life 4. Redefining relationships with caregivers
Terminal
1. Dealing with symptoms, discomfort, pain and incapacitation 2. Managing health procedures and institutional stress 3. Managing stress and examining coping 4. Dealing effectively with caregivers 5. Preparing for death and saying good-bye (table continues)
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Table 1 (continued).
Phases
Tasks
Terminal
6.Preserving self-concept 7.Preserving appropriate relationships with family and friends 8. Ventilating feelings and fears 9. Finding meaning in life and death
Note. From Living With Life-Threatening Illness: A Guide for Parents, Families, and Caregivers, by K. J. Doka. 1993, Lexington, MA: Lexington Books. Copyright 1993 by Jossey-Bass Inc.
As a result of their analysis of different approaches on coping with dying, Kastenbaum and Thuell (1995) observed that scientific theories of dying are not possible. The theoretical approaches emphasize a particular range of experience and behavior. They also stress the need for a contextual theory of dying which can help caregivers and family to understand the changing person within a changing socio-environmental field. What they recommend is a kind of active model or evolving narrative that would integrate all of the relevant dimensions of all the relevant individuals which include professional and voluntary care givers and family and friends, who find themselves in a process of coping with dying. Hinton (1984) realizes that dealing with cancer involves the dynamics of personality, illness, courage, the passage of time, relatives, and quality of available care, attitudes of caregivers, and the context of care. Pertinent to the views about coping with living until
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death is the fact that coping is learned behavior. Human beings are born with the ability to adapt to change, but must learn how to cope with loss (Davidson, 1975). Some try out coping strategies that they have observed others use. Others will simply rely on methods that have proved satisfactory in the past. In seeking to understand coping, it is important to know how an individual perceives the situation, thinks, and acts in specific contexts (Hinton, 1984; Silver & Wortman, 1980). Additionally, as Corr et al. (1997) emphasize, because coping involves shifting processes as the relationship between the person and his or her environment changes, different forms of coping may be undertaken at different times. For example, defensive responses may change to problem-solving strategies and emotional reactions to stress may become cognitive appraisals. In essence the actual focus of the individuals coping at any given time is critical. Finally Corr et al. (1997) conclude that the better individuals learn to cope, the more likely they are able to successfully cope with losses in the future. Some questions that become significant for hospice team members in the context of the phenomenon of living with dying are: (a) How and to what extent is the patient coping? (b) Why is he or she coping in this particular way? (c) What does he or she perceive as the goal for coping? Hinton (1973) reports that the behavior of patients coping with progressive malignant disease may become disturbed and noticeable to caregivers. Many patients reaching the terminal stage remain in denial. They know that they are dying but do not speak of it (Hinton, 1973). This helps them to maintain hope, set limited goals towards independence such as wanting to walk again, or coping at home. Others are well aware of the lack of progress and speak in terms of acceptance or despondency. Conner (1993)
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studied denial-related coping ability and found that deniers used interpersonal denial in the service of preserving relationships important to them. Abrams and Finesinger (1951, in Hinton, 1973) examined how patients with cancer prefer rationalization to the unknown, with a marked tendency to blame their past actions, others, heredity, poor medical care, and so forth. Hinton (1973) explains that as disease progresses many become distressed for they cannot cope. Often aggressive, demanding, excessively complaining behavior is an attempt to hide the turmoil they feel. In the same vein, the manner in which some individuals make complaints of pain and discomfort would also expose or hide their fears. Many wish they could die, and this also carries a message of appeal, grief, fear, anger, and despair (Hinton, 1973). Depression includes many things for the terminally ill. Feelings of guilt, worthlessness, a sense of impending loss of loved ones, unfinished business, lack of communication with loved ones specially about dying, and a fear of death are some of the painful issues that the dying person has to confront. Sometimes this can lead to extreme despair. At this stage, too many emotions and stresses compromise coping skills unless the person can reach out to others for support to make sense of the suffering. Hinton (1973) has found that acceptance of the terminal condition can come with this support which can be provided by the multidisciplinary team in hospice. The task-based approaches to coping with dying are based on the premise that family, friends, volunteer and professional caregivers who care for the dying also cope with living with dying (Grollman, 1995). The different dimensions of care required by patients who are dying can exact an emotional toll on caregivers. Confronting imminent death and coping with dying are experiences that resonate deeply within the personal sense of
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mortality and limitation of all who are drawn into the process (Corr et al., 1997; Rosen, 1990). Caregivers must strive for a balance between too much involvement and too much interaction with the needs of others and detached concern or detached compassion (Pattison, 1977). Detached compassion and concern involve entering into the context of the person being helped in a way that enables the caregiver to continue to function effectively in that role and calls for self-awareness of the factors from which stress arises. Harper (1994) recommends programs to address stress as well as staff training, supervision, and support and also the development of an individual philosophy of care and attentions to ones own needs.
Palliative Care--Human and Professional Tasks
For the dying, palliative caregivers make the difference between another good day of living and another terrible day of dying (Saunders, 1976). Palliative care is the focus of hospice care and addresses symptoms rather than their underlying causes (Twycross, 1995). It is essentially an affirmation of life and a rejection of the statement that there is nothing more that can be done for the patient who is living until death. Liegner (1975) and Cassell (1991) reiterate that palliative care is an active and aggressive mode of care whose focus has shifted from a primary emphasis on cure to a primary emphasis on the mitigating of distressing symptoms. Helping those who are coping with dying requires both human presence and the specialized expertise of professionals. Corr, Nabe, and Corr (1997) relate the experience of a professional and a volunteer in the hospice setting. In their narration both of these persons
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became aware that a lot could be achieved in helping people even when they were close to death. They improved quality of life and fostered individual dignity during the time before death. Careys (1974) Living With Death Program elicited some necessary tasks for those caring for the dying in hospital. He found that patients want to hear the truth from the doctor but should be prepared gradually and allowed to be able to express their feelings and ask questions. Doctors do find it difficult and may readily agree to a familys request to hide the truth from a patient. Doctors must be willing to seek or accept the help of spiritual and psychological counselors as they deal with this task. Proper administration of pain medication is a high priority for doctors as this can affect emotional equilibrium, and reassurance of pain control in the future is important. Nurses may not have the counseling skills, but they are often the only ones available in moments of crisis and depression particularly at night and for patients who do not have family. They can best help by listening for subtle clues of the patients feelings and by attempting to adapt to his mood rather than trying to be cheerful (Carey,1974). Social workers can help to alleviate the patients anxiety of being a burden on others by organizing available care, giving reassurances, and supporting the families as they help the patient. Much of the care required by terminally ill cancer patients involves fundamental concerns common to all living human beings. However, these concerns may take on special intensity under the pressures of coping with dying and may involve the expertise of professionals (Corr et al, 1997). The aim of the care helps patients to understand that they are valued and that their individual experience is respected. Saunders (1990) learned that
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dying persons ask for three things of their caregivers. They ask for help to minimize distress, they ask for their wishes to be heard, and they ask for social support and company.
Dimensions of Care
Saunders (1967) and Woodson (1976), have identified four primary dimensions of care as they apply to those who are coping with dying: the physical, psychological, social, and spiritual aspects. Physical Aspects of Care Dull or invasive, sharp or intermittent, chronic pain forms the backdrop of whatever the patient is doing. In terminal illness this pain is associated with the disease that will lead to death. It is evident that a lot of pain has a psychological component. McCaffery and Beebe (1989) stress that it is important to accept that pain is whatever the patient says it is, existing whenever the person says it does. Care of the dying has shown that pain can be controlled or at least greatly diminished in nearly every case (Doyle, Hanks, & MacDonald, 1993; Saunders, Baines, & Dunlop, 1995; Twycross, 1995). Dying persons may also experience other physical symptoms that can be just as distressing as or even more distressing than physical pain. Saunders and Sykes (1993) include symptoms of constipation (a common side effect of narcotics), diarrhea, nausea, and vomiting, physical debilitation, loss of appetite, and shortness of breath as widespread in advanced cancer patients. Additionally, hair loss, dark circles around the eyes, changes in skin color are also matters of concern as they affect self-image. Moreover, smelly fungating wounds, skin and mouth ulcers, and bedsores are potential sources of severe discomfort. Diminishing these symptoms is important for effective care of the dying (Kemp, 1995).
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A study that evaluated symptoms in 1000 patients with advanced cancer for referral to hospice reported an average of 11 physiological symptoms per patient. This indicates that advanced cancer patients are poly-symptomatic. The most frequent symptoms were pain (82%), easy fatigue (67%), weakness (64%), anorexia (64%), weight loss (60%), lack of energy (59%), dry mouth (55%), constipation (51%), dyspnea (51%), and early satiety (50%) (Donnelly, Walsh, & Rybicki, 1994). Foley (1986) stated that the perception of pain for each individual with cancer is a complex state determined by multiple factors including age, sex, cultural and environmental influences, and multiple psychological factors. This evidence was mirrored by Jay, Elliott, and Varni (1986) who conceptualized pain as an interaction of behavioral, cognitiveaffective, and physiological responses. Foley (1986) and others (Goldberg & Tull, 1983) believe that the most common cause of pain is the underutilization of appropriate analgesic medications. However, the etiology and effective treatment of pain are complex, and many variables must be considered to form a judgment. Jay et al. (1986) report that anxiety acts as an augmenting factor in the perception of pain, and of conditioned nausea and vomiting. Depression also increases the experience of pain (Carasso, Yehuda, & Streifler, 1979; Foley, 1986). Corr et al. (1997) state that effective care for the dying must address all their distressing physical symptoms. This requires the intervention of palliative care doctors and nurses, but family and caregivers can also play an important role in relieving this distress.
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Psychological Aspects of Care Gregory and English (1994) make a distinction between physical pain and patient suffering. Counselors and caregivers who give compassionate care with understanding and empathy can help with the suffering only when they can be present and engage with those who suffer (Kbler-Ross, 1981). Walshs (1994) study with patients seeking admission to hospice revealed that cancer patients tend to have multiple nonphysical problems that typically arise from psychological distress caused by terminal illness; disruption of personal, social, and work relationships; and increased reliance on family members and friends for physical care. The number and intensity of psychosocial problems increase as cancer progresses. Anxiety, anger, and depression are common reactions that reflect multiple physical and psychosocial distresses. Achute and Vauhkonen (1970 in Derogatis, 1986) found various overlapping psychological symptoms in psychiatric interviews with a group of 100 cancer patients. Tenseness, fear of death, depression, aggressiveness, affect liability, paranoid tendencies, and reduced interest in life were prominent among them. Rates of depression were as high as 58%. The prevalence of significant psychological disruptions such as depression, anxiety, anger, feelings of worthlessness and hopelessness are reported in studies done by researchers over the years (Meyerowitz, 1980; Peck & Boland, 1977; Plumb & Holland, 1977, as cited in Telch & Telch, 1986). Much research substantiates the claim that diagnosis and treatment can have pervasive and enduring negative psychosocial effects on the lives of cancer patients (Maquire, Lee, Bevington, Kuchemann, Crabtree, & Cornell, 1978; Meyerowitz, 1983; Morris, Greer, & White, 1977; Schonfield, 1972, as cited in Telch & Telch, 1986). A high prevalence (24% to 69%) of diagnosed disorders, such as depression
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and affective disorders, was associated with dire prognosis and advanced tumor status (Derogatis, 1983 as cited in Derogatis, 1986). Psychological suffering includes feelings, physiological arousal, cognitive processes and behavioral reactions in response to anguish or suffering which causes helplessness, hopelessness, pain, sorrow, worry, exhaustion, states of difficulty, and both psychological and social impoverishment. Someone who is dying is likely to experience anger, sadness, anxiety, and fear. These issues are capable of making care providers even more uncomfortable than a dying persons physical needs (Corr et al., 1997). Zerwekh (1994), in his care giving model for family in hospice, reiterates Saunders (1990) experience that being present, authentic, and reliable with the patient is the most helpful stance. The emotions that the dying patient tackles are very valid. In the face of loss of life, human beings feel sad, angry, and they grieve. It is not surprising that strong feelings may be projected on to others, often inappropriately. Kbler-Ross (1986) confirms that the terminally ill can be helped if counselors can show caring and compassion and can listen to these patients without judgment. She initiated the need to concentrate on the patient, not as a case history but as part of a one-to-one relationship. It is important to face the fact honestly with the terminally ill patient, grieve together, and genuinely give the emotional support he so urgently needs as he suffers (Kbler-Ross, 1986). Watkins and Zuehlke (1975) also substantiate that support is occasion to share feelings and thoughts. Hall (1966) found that sickness breaks down many barriers. Patients value and appreciate being touched, massaged, or shown affection and care with physical contact. Gregory and English (1994) and Byock (1994) reiterate the view that in the relationship with
40
the terminally ill, it is imperative that the patient be allowed to lead as he tries to make sense of his suffering and experiences a sense of resolution and completion. Counseling Terminally Ill Patients Many of the psychological needs of dying persons can be met by any compassionate caring contact (Corr et al., 1997). If there are psychological needs that run deeper and interfere with quality of life, a professional therapist or counselor may be helpful. Richman (1996) states that counseling and psychotherapy with the terminally ill is based on the view that every life is worth living to the very end. The goals are to enrich the last days of life, deal with unfinished business, increase social and family cohesion, and serve as a preparation for a truly good death. Such treatment is a rewarding, life affirming growth experience for the person who knows he is dying (Richman, 1996). Straker (1997) recommends counseling for the terminally ill as an effective approach to understanding the psychological conflicts, stresses and coping issues of cancer patients to improve quality of life. The strongest effects of counseling and psychotherapy have been found in the sickest patients because adjustment difficulties escalate and a marked deterioration has been noted without intervention (McCorkle, Benoliel, Donaldson, Georgiadou, Moinpour, & Goodell, 1989; Spiegel & Bloom, 1983 in Anderson, 1992). The reasons for this are the existential distress that comes with the confirmation of a shortened life span, leading to psychological distress and social disruptions as well as increased numbers and less controllable symptoms of disseminated disease.
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Counseling terminally ill cancer patients is demanding. Studies have noted that counselors need to be comfortable with difficult topics and circumstances such as bedside counseling (Linn et al., 1982 in Anderson, 1992). As patients cope, the counselor must cope as well since they maintain relationships with those about to die. Empathy, warmth and genuineness, historically viewed as the critical therapist variables in counseling process and outcome research (Rogers, 1957; Parloff, Waskow, & Wolfe, 1978 in Anderson, 1992), take on added significance in the context of cancer. These three variables have been universally accepted (Beutler, Crago, & Arizmendi, 1986; Rinpoche, 1992) as being pivotal for cancer patients who are confronting life and death issues when they feel least able to or when significant others are unable to do so (Andersen, 1992). Anderson's (1992) research stresses that patients with extensive metastatic disease and a shortened life respond very well to counseling and psychotherapy, and supportive therapy is usually superior to no-therapy in terms of alleviating distress and improving coping for them in the face of a potential rapid decline status. Beutler et al. (1986) note that the importance of therapist's support is consistent with data suggesting that significant others may not provide social support. This is because the qualities of therapeutic empathy, warmth, and genuineness cannot evolve quickly or be sustained (Beutler et al., 1986). Sometimes, supportive therapy alone is enough to treat depression in cancer patients and can be provided by a psychologist, social worker, hospice nurse, or primary care physician, depending on time, interest, training, and the severity of the patient's condition (Byock, 2000).
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Faller (1993) reviews psycho-oncology and coping research on the adaptive function of denial. He illustrates how a nonconfrontational, supportive stance by counselors can help the terminally ill patient make the transition from denial to acceptance and emphasizes the need for an empathic stance to help the terminally ill. Nichols (1995) and Zerwekh (1994) both confirm the need for caregivers to allow the patient to work off these strong feelings instead of suppressing them, by giving permission and really listening to them. Coping and adjustment gains with counseling. Research (Cain et al., 1986; Forester et al., 1985) confirms that counseling may alter an individuals longer term psychological and behavioral adjustments even when the therapy has been brief (e.g., a total of only 10 hours). The continuation of the effects of counseling, such as lower levels of emotional distress and maladaptive coping as well as control of pain symptom levels, increase the likelihood of adaptive health behaviors, such as improved diet, exercise, and social adjustment, which enhance quality of life (Andersen, 1992). Related reports confirm that significant gains can be achieved with psychological therapy, even as life ebbs away (Andersen, 1992; Linn, Linn, & Harris, 1982). Linn, Linn and Harris (1982) evaluated the effectiveness of working with dying cancer patients by assessing changes in quality of life, physical functioning, and survival. One hundred and twenty men with end-stage cancer were randomly assigned to experimental or control groups; a counselor saw the 62 experimental group patients regularly. Patients were assessed before random assignment and at 1, 3, 6, 9, and 12 months on quality of life and functional status. Experimental group patients improved significantly more than the control group on quality of life within 3 months. Functional status and survival did not differ between groups. A subsample of lung cancer patients provided cross-
43
validation of these findings. Although survival was not expected to differ, it was predicted that functioning would be enhanced if quality of life improved. One interpretation is that although little can be done to alter physical function and survival when intervention occurs late in the progression of a fatal disease, much can be done to improve overall quality of life. The improvements with therapy for advanced cancer patients are notable considering their worsening pain, increasing debilitation, or both as they approach death. Measures of emotional distress have been found to be sensitive to posttreatment improvements as well as gains with follow-up. In addition, change in other areas such as self-esteem, self-concept, death perceptions, life satisfaction, and locus of control were more often found (Ferlic, Goldman, & Kennedy, 1979 in Anderson, 1992; Linn, Linn, & Harris, 1982). These effects were not detected in studies with low-risk patients. Important for quality of life, Spiegel and Bloom (1983) have found that psychotherapy could also lower or stabilize pain reports as well as decrease the use of maladaptive coping responses. In 1980, Gordon, Freidenbergs, Diller, Hibbard, Wold, Levine, Lipkins, Ezrachi, and Lucido found that despite the well-documented psychological distress that has been associated with cancer, there had been few reported systematic efforts directed at developing, delivering and evaluating a program of counseling therapy designed specifically for cancer patients. Until then the existing psychosocial programs focused on "death and dying" issues rather than the day-to-day disease-related difficulties that cancer patients usually confront. Gordon et al. (1980) studied the efficacy of psychotherapy with cancer patients by attempting to implement an effective program for adult cancer patients and to evaluate the impact of this program in ameliorating the psychosocial problems of the cancer patient.
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Three forms of therapeutic intervention were used: first, educating the patient about how to live with the disease effectively; second, counseling, which was focused on the patient's reactions to and feelings toward the disease; and third, intervention involving environmental manipulations and consultations with other health care personnel. The second type of intervention involved encouraging the patient to ventilate feelings; offering reassurance and verbal support; helping the patient to clarify their own feelings and interpret his or her thoughts, feelings and behavior; encouraging the patient to act on his or her environment; allowing the patient to explore past and current situations; and offering indirect support by listening to patients and chatting with them about events unrelated to their medical condition. These therapeutic interventions succeeded in improving cancer patients adjustment to living with their disease. They effectively ameliorated some of the psychosocial problems and some decline of negative affect (i.e., anxiety, hostility, and depression). Among the long term effects associated with the interventions were the active involvement in the environment of those in the intervention group compared to the increase in frequency of idle activities in the control group. Counseling and life reviews. Butler (1974) suggested that the life review among dying patients is characterized by a progressive return to consciousness of past experience, in particular the resurgence of unresolved conflicts which can be surveyed and integrated in the living with dying phase. He reiterates further that the life review is mobilized by the persons awareness of approaching death. When developing a treatment strategy, the counselor can actively question the patient to elicit concerns about death and the dying process, fears about the effect of illness on family members, and past experiences with loss
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(Byock, 2000). By addressing these concerns, the counselor can help the patient connect with past strengths, assets, and spiritual or religious resources, thereby enhancing selfesteem and coping ability. Smith (1985) likens it to the unfinished business to which Kbler-Ross frequently alludes. Westcott (1983) describes how this natural developmental process which may be related to preparation for death, can help psychologists deal with specific problem areas such as low self-esteem, difficulties with relationships, preparations for continued living and dying. Social Aspects of Care Corr et al. (1997) emphasize that social needs of a dying person are often just as urgent as physical and psychological needs. Social needs are the special relationships that most individuals form with one or more people who occupy special roles in their lives. Within these relationships, individuals seek safety and security. In their shelter, one makes plans, works through problems, and defines the meaning of life. Individuals who are coping with dying often need help with these interpersonal attachments (Corr et al., 1997). As disease progresses they may not be able to sustain these relationships, and may require support and assistance with this problem. Social needs also include concerns about ones role and place in the family, the work force or the community at large. Interpersonal interactions between patients, families, friends, and caregivers can be affected by the social contexts in which they take place. Awareness contexts involve the degree to which those who are involved are aware of and share information about dying. Glaser and Strauss (1965) argued that once a person is discovered to be dying, the relationships between that person and family and friends as well as professional and
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voluntary caregivers could take four basic forms. Closed awareness is a context in which the person who is dying does not know of his impending death, while caregivers and family may know but have not conveyed this fact to him. This knowledge may not stay hidden for long as alterations in the behaviors of others or changes in the patients physical appearance due to progression of the disease lead to recognition that all is not well. The patient may then begin to suspect or become aware of the fact that he has not been given all the information relevant to his situation. Distrust and potential social complications can result with this suspicion. Mutual pretense is a context in which relevant information is held by all the individuals concerned but is not shared between them. Mutual pretense requires a great deal of effort and makes the relationship inauthentic. Open awareness describes a context in which the dying person and everyone else realizes and is willing to discuss the fact of imminent death. There is no pretense. This allows for honest communications and participation in the approaching loss. Words of concern and affection can be spoken, old wounds healed, and unfinished business addressed. These benefits come at the cost of admitting to powerful feelings and facts that can be difficult for patients, family, and caregivers. The process of dying is rarely easy (Kbler-Ross, 1969). It is not easy for the person whose end is near and is especially difficult when the patient is suffering from severe pain, other intolerable symptoms, disfigurements, fungating growths and odors, and invalidism. It can also be difficult when those closest to the dying person cannot openly talk with the patient about what is happening and cannot bring their relationships to a meaningful closure.
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People often avoid or emotionally withdraw from those who are dying because they may not know what to do or say to make things better or they cannot cope themselves. This causes isolation and grief to the dying. The shock, pain, and anxiety of death knowledge potentially take away the transactions with others which is valued most in life. A persons significance and meaning are dependent on his relationship and communication with others (Imaru, 1975, as cited in Kbler-Ross, 1986). Social ties and relationships have long been regarded as emotionally satisfying aspects of life as they mute the effects of stress and help people cope with the exigencies of chronic disease. Research clearly indicates that social support can reduce psychological distress in progressive advanced cancer. Consequently many cancer patients have enhanced needs for social support to help them deal with fears and ambiguities (Bloom, 1982; Carey, 1974 in Taylor et al., 1986). A positive relationship has been noted between emotional support from caregivers and degree of physical and psychological adjustment to cancer by Carey (1974) in his study of patients with advancing disease. Wortman and Denkel-Schetters (1979, in Taylor et al., 1986) research reveals that cancer creates two conflicting reactions in significant others: feelings of fear and aversion to cancer, and a cheerful, optimistic faade. The conflict between these reactions may produce ambivalence toward the patient and anxiety about interacting with him or her. Consequently, significant others may physically avoid the cancer patient or may openly avoid communications about the disease. These discrepancies in behavior, specifically positive verbal but negative nonverbal behavior, can lead the patient to feel rejected or abandoned by loved ones.
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If support comes from the wrong person or if it is the wrong kind of support, this may actually exacerbate stress (Cohen & McKay, 1983; Heller, 1979; Schaefer et al., 1981; Suls, 1982; Wortman, 1984; in Taylor et al., 1986). In the study by Taylor et al. (1986), more than 50% of the respondents wished they could talk more freely and openly about the cancer and related problems with family and friends but felt that family members did not really understand what they were going through. Careys (1974) study confirmed that emotional adjustment was influenced by the patients physical condition, by previous experiences with dying persons and by interpersonal relationships, specially with the nearest of kin. Spiritual Aspects of Care Corr, Morgan, and Wass (1994) note that another important concern for patients living until death is spiritual in nature and dying persons need to work out spiritual questions about God, pain, achievements, and the meaning of life on their own, although searching for meaning may and may not involve a religious formulation or affiliation. Smith (1985) confirms that terminal illness as a crisis may involve spiritual suffering in which many dying persons retreat into the safety and security of rites and rituals and seek consolation in the assurance these religious practices provide. Dying patients vacillate between hope and despair, faith and doubt, and consolation and desolation and may seek or reject spiritual support. Dying persons need to work out their own answers to the spiritual pain (Corr, Morgan, & Wass, 1994) and find meaning and purpose in their changing circumstances. They need to tell their own stories and find meaning in their lives. Boerstler and Kornfelt (1995) and Zlatin (1995) reiterate that patients can be helped through this aspect of their
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terminal illness if people affirm and value them, empathize--not sympathize--with the angst that they face, and reflect and meditate along with them by entering into their life themes. Doka (1993) identified three principal spiritual tasks for those who are dying: to find meaning in life, to die appropriately consistent with ones identity, and to find hope, which is an important aspect of spirituality in human lives. Coping with dying often involves a process much like a life review and may include an evaluation of what one has done and been to define the meaning of ones life. Bailey (1990) found that enhancing opportunities for creativity is an important way of helping patients with spiritual tasks as the spiritual dimensions of a persons life blend with and interact with the psychological, physical and social dimensions. One hospice inpatient facility had developed a rich program of creative opportunities for patients and found that these artistic endeavors reflect human qualities of coping with living and dying (Bailey, 1990). An examination of the literature on living with dying for patients with terminal cancer reveals the physical, psychological, social, and spiritual aspects of coping, based on different models and frameworks, and the many tasks and issues confronting these patients. It is the realization of these multiple disruptions caused by cancer disease that has been the impetus for the growth of the hospice and palliative care concept and its introduction through home and inpatient hospice care. The most essential feature of this concept is the presence of a multidisciplinary team including doctors, nurses, nurses aides, social workers, volunteers, and counselors who address the coping tasks of the patients, their families, and friends. As they must cope with living with dying so must the professional and voluntary team of hospice, as they care for and meet the needs of the terminally ill patient with focus
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on quality of life and dignity even as life ebbs away. This study seeks to understand and construct the phenomenon of living with dying of cancer patients in a hospice through the experience, insights, reflections, and perspectives of members of the multidisciplinary team.
Statement of the Problem
The present qualitative study is inspired by the researchers counseling work with terminally ill cancer patients in a hospice, as part of a multidisciplinary team. This team takes care of physiological and psychosocial predicaments, needs, and concerns of the terminally ill so that they may live better quality of lives until they die. This study, using the perspectives of the hospice team, will focus on cancer patients' responses to psychosocial stress, their physical suffering, their resourcefulness, and their inadequacies in the face of death. It is the objective of this qualitative, heuristic inquiry to interpret the meanings and constructions of those who care for patients in an inpatient hospice facility: the doctors, nurses (nuns), nurses aides, counselor, and social workers, on the phenomenon of living with dying. This will be achieved by attempting: (a) to construct a model of the phenomenon and (b) to creatively synthesize the analyzed data into a systematic exposition using the following research questions: 1. How do terminally ill cancer patients experience the phenomenon of living with
dying in an inpatient hospice facility in Delhi, India as perceived by the doctors, Sister Nurses, nurses aides, social workers, and counselor (hospice team)? 2. What are the physiological and psychosocial distresses and predicaments that
impact on the quality of life of terminally ill cancer patients as seen by the hospice team?
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3.
How do dying patients deal with these distresses and adjust to living in an
inpatient hospice facility? What are the coping styles, and the patterns of adjustment or maladjustment of patients as noted by the multidisciplinary team? 4. What is the experience of team members in caring for these terminally ill
patients in a hospice setting? What skills and resources are most helpful? 5. with dying? How do the hospice team cope with the stress of caring for patients who live
Significance of the Study
A systematic and qualitative inquiry and exposition on the phenomenon of living with dying from a hospice teams perspective holds theoretical, methodological and practical significance to the field of psychology, its therapists, researchers and clients, and to the people concerned with the reality of living with terminal cancer. A review of related literature both in India and in the Philippines has shown a dearth of research on this experience within a hospice setting and in an Asian context for that matter. The current research is therefore novel as it seeks to contribute to a deeper understanding and appreciation of the meaning constructions of hospice caregivers from various disciplines and invites further scientific inquiry into the phenomenon of living with dying. The theoretical significance of this study lies in the construction of an interpretative model of the experience and the creative synthesis of the understanding of the essence of the phenomenon.
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The method of inquiry and analysis departs from the more common research process and attempts to achieve triangulation of data by the use of different qualitative methods. By the very nature of its focus on the phenomenon of living with dying, this inquiry is valueladen and qualitative research within a constructivist paradigm was the best option for this sensitive topic. There can be multiple and often conflicting constructions of reality, all of which are potentially meaningful. The use of heuristic inquiry elicits the essence of the phenomenon through the insights and experience of the researcher and shared reflection with others intensely involved and opens the door to more intricate questions for further research. The study, likewise, hopes to make significant contributions to the theoretical and practical understanding of the world of terminal illnesspsychosocial and physiological effects of biological diseases, the complex interactions of the elements and components of this phenomenon, and the important and unique dynamics within a hospice environment. Biological diseases, like cancer and AIDS among others, exact terrible physiological suffering, cause psychological distress, disrupt social ties and relationships, and compromise quality of life. Complex interactions exist between the physical and psychological and social sources of distress and the physical and psychological disabilities that accompany terminal illness. Both physical and psychosocial symptoms escalate as disease progresses, and can severely compromise quality of life (Walsh, 1994); psychological distress and social predicaments can, in turn, compound physiological suffering; and the terminal condition further aggravates distress and compromises coping (Carey, 1974).
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This research can be significant because by describing the world and experience of terminally ill cancer patients in hospice, it would pave the way for a better understanding of the way dying patients think, react, behave and feel as they do. Families can gain perspectives of the physical, psychological and social distresses, and coping styles of their patients to understand and continue to give the compassionate care and emotional and social support they so urgently need. This study can also make a contribution towards understanding the needs and the kind of care required by people who are dying with cancer and other terminal diseases that exact a physical toll. It can give hope that patients can achieve some control over their lives and lessen vulnerability with compassionate care and support. If patients in the terminal stages of life can be helped to gain significant relief with reduction of distress, improved realistic coping, and healthy adjustment, the living with dying stage of life can become easier. If the social support gained by the patient from the team at hospice can improve social support from significant others, families can provide this support to their patients. Knowledge of the value and need for multidisciplinary support in hospice can be gained as well as a better understanding of how caregivers can cope with their own distresses and issues in providing this care. Finally, the significance of the study for the researcher would be a rejection of certain biases and assumptions and an appreciation of the gains for the terminally ill with comprehensive, compassionate support in a hospice.
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CHAPTER II
METHOD
Metamethodological Paradigm
This qualitative study, guided by the constructivist paradigm, utilizes heuristic inquiry to understand and construct the essence of the phenomenon of living with dying for terminally ill patients, from the perspectives and constructs of 12 members of the multidisciplinary team of an inpatient hospice facility. Qualitative Study Qualitative research is multi-method in focus, involving an interpretive, naturalistic approach to the subjective matter (Denzin & Lincoln, 1994). It enables researchers to study things in their natural settings, attempting to make sense of, interpret, or construct phenomena in terms of the meanings people bring to them. The purpose of data production in qualitative designs is to accumulate sufficient depictions of instances of the phenomenon under study to permit construction of a pattern that fully describes the diverse qualities of the phenomenon (Polkinghorne, 1991). It involves the studied use and collection of a variety of empirical materials such as case studies, interviews, and personal experience. These multiple methodologies of qualitative research may be viewed as a bricolage, and the researcher as a bricoleur (Weinstein & Weinstein, 1991). The researcher as a professional do-it-yourself person produces a bricolage, by deploying various strategies, methods and empirical materials that result in an emergent construction to a phenomenon in a concrete
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situation. The result is a complex, dense, reflexive creation that represents the researchers images, understandings, and interpretations of the world or the phenomenon under analysis. The choice of research practices depends upon the questions that are asked, and the questions depend on their context (Nelson, Treichler, & Grossberg, 1992). The present research emphasizes processes and meanings that would lose their essence if measured in terms of quantity, amount, intensity, or frequency. Instead it stresses the socially constructed nature of reality, the intimate relationship between the researcher and what is studied, and the situational constraints that shape the inquiry; and seeks strategies of empirical inquiry that will allow connections to be made among lived experiences (Denzin & Lincoln, 1994). By the very nature of its focus on the phenomenon of living with dying, this inquiry is value-laden and seeks answers to questions that stress how social experience is created and given meaning. The individuals point of view is sought through detailed interviewing and observations resulting in rich descriptions of the social world. The researcher draws upon her personal experiences as a resource in this inquiry. She is a member of the multidisciplinary team. All these factors and preferences lead to the choice of a qualitative research study. Constructivist Paradigm The paradigm that is employed in this study is Guba and Lincolns (1989; 1999) constructivist paradigm, originally called naturalistic inquiry. This wide ranging eclectic framework was proposed as a replacement for the positivist paradigm of inquiry which claims that there is a unique real world that preexists and is independent of human mental activity and human symbolic language (Bruner, 1986). Constructivists are deeply committed to the contrary view that emphasizes the world of experience as it is lived, and objective
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knowledge and truth as the result of perspectives (Schwandt, 2000). Knowledge and truth are created, not discovered by the mind. There is no unique real world that preexists and is independent of human mental activity and human symbolic language. Human beings do not find or discover knowledge so much as construct or make it. We invent concepts, models and schemes to make sense of experience and we continually test and modify these constructions in the light of new experience (Schwandt, 2000). Constructivist approaches to human inquiry share the goal of understanding the complex world of lived experience. There is an abiding concern for the life world, for the emic point of view, for understanding meaning, for grasping the actors definition of a situation, and for understanding social phenomena (Schwandt, 2000). Social actors construct the world of lived reality and situation-specific meanings that constitute the general object of investigation. Particular actors, in particular places, at particular times, fashion meaning out of events and phenomena through prolonged complex processes of social interaction. Constructivists believe that to understand this world of meaning the inquirer must elucidate the process of meaning construction, clarify what and how meanings are embodied in the language and actions of social actors (Guba & Lincoln, 1989), and assume that the observer cannot and should not be neatly disentangled from the observed in the activity of inquiring into constructions. Guba and Lincoln (1985) also recognize that there can be multiple, and often conflicting, constructions and all are at least potentially meaningful. Truth is a matter of the best informed and most sophisticated construction on which there is consensus at a given time.
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The constructivist paradigm dictates with varying degrees of freedom the design of a qualitative research investigation (Denzin & Lincoln, 2000). There is less emphasis on wellformulated hypotheses, tightly defined sampling frames, structured interview schedules, and predetermined research strategies and methods and forms of analysis. Instead qualitative designs mimic the constructive processes that humans ordinarily use to understand their experience. Humans have a natural propensity to search for patterns of consistency in their experience (Margolis, 1987). These patterns provide the interpretive schemes through which events are understood and actions undertaken. However, unlike ones daily endeavor of pattern construction, qualitative research is deliberative, methodical, and subject to scrutiny (Polkinghorne, 1991). The aim of this study is to arrive at a consensus about the understanding and reconstruction of how people, including the researcher, initially construe the experience of living with dying for terminally ill cancer patients in hospice (Lincoln & Guba, 1994). The constructivist paradigm is the basic belief system that will guide the researcher in the choice of method and in ontologically and epistemologically fundamental ways. Thus, this research contends that there are multiple constructed realities that may be studied only holistically; inquiry into these multiple realities will inevitably diverge so that prediction and control are unlikely outcomes, but some level of understanding is achieved. The inquirer and the object of inquiry interact to influence one another and are inseparable. Generalizations that are time and context-bound are not possible, as the aim of the inquiry is to develop an idiographic body of knowledge in the form of working hypotheses that defines the individual case. It is impossible to find causal linkages that are temporally simultaneous with their effects as all entities are in a state of mutual shaping. The inquiry is
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value-based because the researchers values are expressed in the choice of the problem, and in the framing, bounding, and focusing of that problem. It is entirely influenced by the choice of the constructivist paradigm which guides the investigation into the problem, the collection and analysis of data, and the interpretation of findings. The inquiry is guided by the values inherent in the context and the problem. Paradigm and context are congruent (Lincoln & Guba, 1994). Heuristic Inquiry This research utilizes heuristics, which is a form of phenomenology to focus on the structure and essence of the phenomenon of living with dying through the perspectives of members of the multidisciplinary team of an inpatient hospice facility who care for those who experience the phenomenon (Patton, 1990). Heuristic research uses intensity sampling and draws explicitly on the intense personal experiences of the researcher as well (Patton, 1990), recognizing her as the instrument and taking into account her experiences and perspectives as valuable and meaningful to the study (Lincoln & Guba, 1985). It relies on qualitative methods, which capture a more complete picture of individual lived experience instead of a narrow perspective of generalizations. This study seeks to discover, understand, and explain the researchers perspective of the phenomenon of living with dying and the essential perspectives of others who also experience this phenomenon intensely through their involvement with terminally ill patients in an inpatient hospice facility. There are two focusing or narrowing elements of heuristic inquiry within the larger framework of phenomenology. First the researcher must have personal experience with and intense interest in the phenomenon under study. Second, others who are part of the study must share an intensity of experience with the phenomenon.
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It is the combination of personal experience and intensity that yield an understanding of the essence of the phenomenon. It is not inquiry into casual experience. Heuristics is concerned with meanings, not measurements; with essence, not appearance; with quality, not quantity; and with experience, not behavior (Douglas & Moustakas, 1984). Heuristics is Greek in origin and means to discover or I find and can be related to eureka (Patton, 1990). The reports of heuristic researchers are filled with discoveries, personal insights, and reflections. Discovery comes from a kind of being wide open in surrender to the thing itself, a recognition that one must relinquish control and be tumbled about with the newness and drama of a searching focus that is taking over. The uniqueness of heuristic inquiry is the extent to which it legitimizes and places at the fore these personal experiences, reflections, and insights of the researcher. The researcher, then, comes to understand the essence of the phenomenon through shared reflection and inquiry with others intensely involved. It is through shared reflection and inquiry between researcher and participants, seen as coresearchers, that the phenomenon of living with dying in an inpatient hospice facility is understood. A sense of connectedness develops between researcher and research participants in their mutual efforts to elucidate the nature, meaning, and essence of the significant human experience. Heuristic inquiry is derived but different from phenomenology in that it emphasizes connectedness and relationship, while phenomenology encourages more detachment in analyzing an experience. Heuristics leads to depictions of essential meanings and personal significance which imbue the search to know, while phenomenology emphasizes definitive descriptions of the structures of experience. Heuristics concludes with a creative synthesis that includes the researchers intuition and tacit understanding, while phenomenology
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presents a distillation of the structures of experience. Whereas phenomenology loses the persons in the process of descriptive analysis, in heuristics, the research participants remain visible in the examination of the data and continue to be portrayed as whole persons. Phenomenology ends with the essence of experience; heuristics retains the essence of the person in experience. Researcher as Instrument In keeping with qualitative research methods, the researchers experience of the phenomenon under study is also included as data by means of a self-interview. This serves the double purpose of alerting the researcher to possible biases and premises that might interfere with adopting a neutral stance towards the content of the data (Colaizzi, 1978). Reflexivity or reflecting critically on the self as researcher or inquirer and as instrument or respondent forces the researcher to come to terms with the choice of the research problem, with those who are engaged in the research process, and with the multiple identities that represent the fluid self in the research setting (Guba & Lincoln, 1981). It represents a step in the process of introspection and integration of the world and life of those living with dying. It addresses the desire to understand humans who suffer from terminal disease as they live day-to-day; and it also enables one to appreciate and comprehend how they feel, think, behave, and cope with a shortened life span, and with physiological, psychological, and social problems and distresses.
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Participants
Research participants (coresearchers) were 12 members of the multidisciplinary team of the hospice with ages ranging from 19 to 65 years. All of them were Indians, 2 men and 10 women; educational levels ranged from incomplete high school to graduate degrees, postgraduate fellowships and specializations. The number of years in hospice work ranged from 2 years to 12 years. Pseudonyms were used to conceal the participants identity and protect confidentiality. The participants included two palliative care doctorsa male doctor, who is also a practicing surgical oncologist and has been working with the hospice for 6 years, and a female doctor working there for 5 years, who teaches in a medical college and was trained in palliative care by the hospice. The three nuns who participated belong to the order of the Sisters of the Holy Cross and are trained nurses who have had previous experience working in hospitals. One of the nuns has been working in a hospice for 12 years; the other two have been at the hospice for 4 years. The nuns at the hospice have trained the two nurses aides who were participants in this study. Their jobs on the ward with patients include feeding, bathing and cleaning, giving medication and food, assisting the nuns in wound cleaning and dressing, moving patients around in bed to prevent bedsores, helping them walk, and taking their beds to the TV area or outside. On a rotational basis they are given laundry, kitchen and other duties to reduce the stress of working continuously on the ward with patients.
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The four social workers who were interviewed include: a gentleman and a lady who have been actively involved with the hospice since its inception and who visit patients regularly once a week; a lady, who brought her mother for terminal care to the hospice and who has, for the last 3 years, come to the hospice three times a week, actively involving herself in the day to day care of the patients as well as organizing entertainment for them; and another lady social worker who has been involved in the work for the last 2 years reading to the patients on spirituality and listening to them as they share their thoughts on the subject and other issues. The researcher, as participant, is a hospice counselor and has been trained in and involved with this hospice since 1997, on a voluntary basis.
Procedure
Entry Into the Field A meeting was held with the Administrator and the Nursing Superintendent (both nuns) of the hospice in Delhi, India, to explain the research study and the need to collect data through interviews with members of the multidisciplinary team. The institution granted consent, and both nuns agreed to become participants while also providing other names for sampling. Participants for this study were selected through purposeful, intensity sampling (Patton, 1990). This approach selects information-rich cases from which one can learn a great deal about issues of central importance to the purpose of the research. The participants were purposefully selected based on the length of their experience in the work, their area of specialization, and their deep commitment to the work they do. Three Sister nurses, two nurses aides, four social workers, and two palliative care doctors, were selected. The
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researcher met and informed them of the nature of the study and gained their consent to discuss their intense experiences and understanding of the phenomenon of living with dying in terminally ill cancer patients, especially those in the living-dying phase (Pattison, 1977). The purpose and scope of the study were reviewed, and an appointment was made for an interview. Informed consent was discussed and confidentiality was emphasized. Data Sources All the participants consented to the tape recording of their individual interviews. Interview schedules were worked out depending on the convenience of the participants and lasted from 45 minutes to an hour. Most of the interviews took place at the hospice, except for those with the social workers who preferred to meet the researcher in their homes. In-Depth Interviews The constructivist paradigm adheres to the assumption that the perspective of others is meaningful, knowable, and able to be made explicit (Patton, 1990, p. 278). The rigor of heuristic inquiry comes from systematic observation of and dialogues with self and others, in-depth interviewing of participants (coresearchers), and creative depictions of the experience of the phenomenon of living with dying. The qualitative interview was conceived of as a conversation. It involved an interpersonal engagement in which participants were encouraged to share, with the researcher, detailed elaborations of their experience with respect to the phenomenon of living with dying for patients in their care and related topics being investigated. The actual phrasing and content of the questions changed in response to the unfolding descriptions and narrative given by participants (Mischler, 1986). Care was exercised to remain open to the presence of new and unexpected elements in the descriptions and to explore descriptions that are disconfirming of the literature. The interview guide
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approach to interviewing started with a list of issues (see Appendix C) to be addressed by each participant, still allowing other topics, specific to each participant, to emerge (Patton, 1990). In this approach interview questions were asked in an open-ended fashion in order to minimize the imposition of predetermined responses when gathering data (Patton, 1990). The interview guide for interviews addressed: (a) the experience of living with dying and coping for patients with terminal cancer in a hospice, (b) the participants experience while caring for these patients, (c) the skills and methods most helpful to caring for the needs of the dying, (d) patients adjustments to living in hospice, and (e) caregivers experience of working in hospice setting with a team. The issues of the phenomenon of living with dying with cancer that were investigated included the perceived experience of patients who are dying with cancer; how they handle, cope with, and adjust to day-to-day living in the face of death; their need and distresses; their ability to face the realization that they are dying and come to terms with it; and their quality of life as understood by the participants. Issues regarding participants experience of caring for the terminally ill included their own coping strategies, how they help patients cope, and their perspectives of living with dying in a hospice. Open-ended questions regarding these issues were developed prior to the initial interview. At the beginning of each interview session, the interview format was explained to each participant. They were informed that the questions revolved around understanding the phenomenon of living with dying, their perception of the experience of patients living with dying and coping, as well as the participants own experience and coping strategies to do this work. The researcher encouraged the subjects to focus on specific situations and individuals and events that would describe their experiences. The interview for each of the
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participants started with an appreciation of their acceptance to do the interview to share their thoughts, feelings, perspectives, and experiences of the phenomenon of living with dying in the hospice. They were then asked to give information about themselves and how they decided or chose to work in the hospice. The order of the remaining open-ended questions was unstructured, and encouraged the natural flow of thoughts and ideas that were elicited in the course of the interview. Participant-Observer Role of Researcher: Biases and Assumptions The researcher had direct contact with and got close to the people, situation, and the phenomenon of living with dying; and her personal experience and insights were an important part of the inquiry and critical to understanding the phenomenon. The researchers aspiration was to understand the world in all its complexitynot to prove, advocate, and advance personal agendas but to understand. Hence, as a participant-observer, a journal of her personal experiences and empathic insights were included as part of the relevant data, while taking a neutral nonjudgmental stance toward whatever content emerged. The stance of the research vis--vis the phenomenon of living with dying was subjective in large part because the researcher was the instrument of both data collection and data interpretation and because the qualitative strategy included having personal contact with and getting close to the people and situation under study. The commitment was to understand the world as it is, to be true to complexities and multiple perspectives as they emerged, and to be balanced in reporting both confirming and disconfirming evidence. The researcher was keenly aware of the intrinsically social nature and human purposes of the research and was dedicated to discover the perspectives of others as well as her own and not to prove a particular perspective. In this qualitative inquiry, neutrality to the data was
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ensured through systematic data-collection procedures, multiple data sources, triangulation and external reviews. Complete objectivity was impossible but credibility was achieved through a process of peer debriefing (Lincoln & Guba, 1985). This process of exposing oneself to a disinterested peer in a manner paralleling an analytic session was accomplished with a counselor, who probed the researchers findings and meanings to clarify the basis for interpretation, and explored with the researcher aspects of the inquiry that might otherwise have remained implicit within the researchers mind. The debriefing sessions were vital and significant as they also provided the researcher the opportunity for catharsis to clear the mind of emotions and feelings that sometimes clouded good judgment. To establish credibility whereby data, analytic categories, interpretations, and conclusions are tested with members from whom the data were originally collected (Lincoln & Guba, 1999), the analysis of their interviews was discussed to assess the participants intentions for giving certain information, to correct errors of fact or correct wrong interpretations, to volunteer additional information, and to put on record the correctness of the researchers recording of information. This procedure, besides acknowledging the coresearcher role of the members of the hospice team, was valuable as it paved the way for a true understanding of the phenomenon of living with dying of the terminally ill patients. The aim was to assess their intentions for giving certain information, to correct errors of fact or correct wrong interpretations; to allow for emergence of additional information; and to put on record the correctness of the researchers recording of the analytic categories, patterns, interpretations, and conclusions.
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Accountability was achieved through ongoing consultations and external reviews with colleagues and through maintaining an audit trail [italics added] that outlined the research process and the various phases of analysis. According to Lincoln and Guba (1985) both dependability and confirmability can be determined through one properly managed audit. This consisted of chronological narrative entries of research activities including preentry conceptualizations, entry into the field, interviews, transcriptions, and themes of the phenomenon of living with dying with cancer in a hospice. The researcher wrote analytic and self-reflective memos to document and enrich the analytic process, to make implicit thoughts explicit, and to expand the data corpus (see Appendix H). A self-reflective memo [italics added] relating the researchers experiences and reflections, and personal reactions to participants interviews was maintained. The researchers personal thoughts about the participants frame of reference, reactivity to caring for patients living with dying, and subsequent reasons for their behavior and constructions of their experiences were also noted. This memo was included in the data to be analyzed and brought to the fore the biases and assumptions of the researcher. Analytic memos [italics added] were compiled into an analytic journal and consisted of questions, thoughts, and conjectures about the data and emerging themes of the phenomenon of living with dying. Data Collection A central concern for rigor in qualitative research is sufficient time in the field and extensiveness of the body of evidence used as data (Erickson, 1986). All the participants in the study have worked at the hospice for between 2 to 12 years. The interview data consisted of about 12 hours of audiotapes. The researcher transcribed all of the audiotapes verbatim (see Appendix D, Sample of Interview). The data corpus consisted of
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approximately 100 pages of interview transcriptions, 9 pages of case study with life narratives, 15 pages of self-reflective memos, 195 pages of analytic memos, and 30 pages of audit trail. A study using a qualitative design usually assembles data from a variety of sources. Data included the 12 interviews; follow-up notes; the researchers analytic memos; selfreflective memos and audit trail; an instrumental case study, chosen from four such studies of patients who lived until death in the hospice; and photographs of patients, the Ashram (hospice), and the team members taken with permission to have graphic representations of the context of the study. To preserve confidentiality, these pictures were not appended. The use of different qualitative methods of data collection ensured triangulation of data. During the initial stages of data collection in the form of interviews the researcher discovered that two interviews on the same day resulted in fatigue as well as confusion that a question may have been asked when it was not. The two initial interviews were not included in the study but served as materials for learning and training. Case Study Robert Stake (1994) explains the use of an instrumental case study to provide insight into an issue or refinement of theory. The case is of secondary interest; it plays a supportive role, facilitating understanding of something else. The case is often looked at in depth, its contexts scrutinized, its ordinary activities detailed, because this helps the researcher pursue the external interest. The case may or may not be typical of other cases. In this study, the researcher presents a case study (Appendix E) of a patient who lived in the hospice for 8 months before succumbing to cancer. This patient began writing the story of his life. He shared what he chose to disclose as he constructed his story.
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The researcher (as counselor) and patient explored and reflected on some of the issues and concerns brought out by the story as well as his current feelings, behavior, thoughts, and actions in the hospice. The choice of this case was made because it advanced understanding of the phenomenon through vivid depictions of the processes involved in dealing with challenges as well as a clearly verbalized understanding of the importance of the support of the hospice as these challenges were faced. Importantly, this case validated the individuality of human experience. Data Analysis and Writing Rigor in heuristic inquiry is offset by the flexibility, insight, and ability to build on tacit knowledge that is the peculiar province of the human instrument (Lincoln & Guba, 1981, p. 113). This mode of inquiry affirms the possibility that one can live deeply and passionately in the moment, be fully immersed in mysteries and miracles, and still be immersed in a meaningful research experience (Patton, 1990). It emphasizes connectedness and relationship to depict essential meanings and conclude with a creative synthesis that includes the researchers intuition and tacit understanding as well as the essence of the person in experience (Patton, 1990; Douglas & Moustakas, 1984). Data sources were used to collect extensive descriptions of the phenomenon of living with dying. Qualitative designs study qualities or kinds and call for obtaining vivid and rich descriptions of instances (Denzin & Lincoln, 2000). Thus, in the study of the phenomenon of living with dying, the researcher looked for vivid and rich descriptions of the phenomenon and the participants experiences with the phenomenon.
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As described by Schwandt (2000) constructivism means that human beings do not find or discover knowledge so much as they construct or make it by inventing concepts, models and schemes, which correspond to the real world, to make sense of experience. Patton (1990) reiterates that interpretative explanations of qualitative analysis emphasize illumination, understanding and extrapolations, rather than prediction, generalizability and causal determination. The purpose of this qualitative analysis was to develop a structure or pattern of relationships that organized the phenomenon of living with dying into a unified whole. The emphasis was on discovery, illumination, and understanding through identifying the larger patterns and the constituent subpatterns. The analysis was based on properties of the constructions that the participants made to interpret experience, and on the nature or quality of a construction that depended upon the range and scope of information available to the constructor. The search for patterns of connection in experience involved identifying the larger patterns and then the constituent sub-patterns. The analysis continued until it reached the level of structural organization implied by the research question (Pollinghorne, 1991). The heuristic process of inquiry and analysis is a highly personal process (Moustakas, 1990) involving five basic phases in the heuristic process of analysis: immersion, incubation, illumination, explication, and creative synthesis leads to the discovery of new perspectives and meanings, a new vision of experience. The fundamental richness of the experience and the experiencing participants is captured and communicated in a personal and creative way. In heuristic analysis, the insights and experiences of the analyst are primary, including drawing on tacit knowledge that is deeply internal (Polanyi,
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1983, in Patton, 1990). The power of heuristic inquiry lies in its potential for disclosing truth. Through exhaustive self-search, dialogue with others, and creative depictions of experience, a comprehensive knowledge is generated beginning as a series of subjective understandings and developing into a systematic and definitive exposition. Data was analyzed by proceeding systematically through the five phases. During the stage of immersion, or steeping oneself in the data, the researcher listened to the individual taped interviews and read and reread the transcripts to get in touch with the texture, tone, mood, range, and content of the experience of each participant. The researcher questioned, meditated, and dialogued with the data but without a concrete goal or purpose. The process of qualitative analysis (Polkinghorne, 1991) began at the surface where firstly, data appear as a loose and disconnected assemblage of disparate bits of information. The next stage of incubation was a time of quiet contemplation, allowing space for awareness, intuition, insight, and understanding. In the incubation stage the researcher deliberately withdrew, permitting meaning and awareness to awaken in their own time. Then, as incubation with the data continued, units of data (sentences or paragraphs) began to coalesce around categories and themes, and a subjective understanding borne out of hunches and some insights led to clarity of the experiences and meanings. In the phase of illumination the researcher began to discover themes and patterns and the analytic process at this phase was a search within individual participants interviews for data concerning these themes (Appendix F). Four main components emerged for each interview that included the perceived experiences of patients, the experiences of the participants, the perspectives of participants and their understanding of the patients perspectives about the hospice, and the participants perspectives about the role of the team.
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Each of these categories had subcategories. Some of these were common to all interviews. For example, themes and patterns that revolved around the experiences of team members working in hospice with terminally ill patients were identified, which included how they communicated with the patients, how they helped patients in psychological or social distress to cope, how they themselves coped, and how they took care of the different needs of individual patients. In this way the contents of the interviews were sorted between the four categories. To gain clarifications and revelations about the content of the data, the explication phase led to putting together or synthesizing information of each category from the 12 interviews. Thus, units with the same theme, such as the perceived experience of the dying patients, were collected and analyzed together to ascertain common elements. A further synthesis was done of the subcategories within a main category, for example all the participants constructions of patients distress or of patients coping with dying were put together. This stage led the way toward a clear unfolding of the experience of the phenomenon of living with dying and its meanings, an illumination or expanding awareness, which led to clarity and increased understanding. After the four phases of heuristic analysis were concluded for each interview, a summary of the interviews was written incorporating the themes, patterns, and structures that were elicited from the data (Appendix G). The aim was to reconstruct the inner world of experience of the participants by identifying general and unique themes for all the interviews as well as the individual variations. This procedure required the heuristic viewpoint of eliciting essences as well as the acknowledgment of existential individual differences (Hyner, 1999).
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The revelations of the explication phase lead to a more systematic and definitive exposition of the phenomenon of living with dying. The process of creative synthesis involved the bringing together of the pieces that emerged into a total experience showing patterns and relationships. New connections were made through further explorations into universal elements and primary themes of the experience. Because of the human bias towards confirmation, an active search for disconfirming evidence was essential to achieve rigor. This is regarded as a process of revising hypotheses with hindsight (Lincoln & Guba, 1999, p. 414). Data were scrutinized to disconfirm various assertions made as a result of the analysis and was included. In this stage of the analysis, the researcher also searched for and included contradictory data that could break up the unity that the descriptions are beginning to uncover. What emerged from the analysis were a depiction of experience and the participants portrayal of the phenomena of living with dying. The researcher did a creative synthesis or bringing together of the pieces that had emerged into a total experience showing new patterns and relationships to communicate findings in an inspired and meaningful way. In heuristic analysis, the insights and experiences of the analyst (researcher) are primary, including drawing on tacit knowledge that is deeply internal (Polanyi, 1983).
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CHAPTER III
RESULTS
A Creative Synthesis of the Phenomenon of Living With Dying in Terminally Ill Cancer Patients in Hospice
The results of this qualitative, heuristic study are presented as a creative synthesis of the hospice teams perspectives of the phenomenon of living with dying as experienced by their patients. The researcher obtained perspectives of the essence of the phenomenon from 12 members of the hospice team who care for them in an inpatient hospice facility in Delhi, India. The 12 participants responded to issues highlighted by the following research points: (a) their perspectives on how terminally ill cancer patients experience the phenomenon of living with dying, (b) their insights and understanding of the physiological and psychosocial distresses and predicaments that impact on the quality of life of these patients, (c) their observations and views on the coping styles and patterns of adjustments of hospice patients in dealing with these distresses, (d) the skills and resources the team members find most helpful to caring for those coping with dying, and (e) their approaches to coping with the stress of caring for patients who are dying. The synthesis begins with a portrayal of the essence of the phenomenon using six Quality of Life Themes of Living With Dying and a Developmental Model that depicts these themes in a temporal framework. An exposition of these themes follows, yielding patterns and vivid descriptions of human interactions and experiences. Lastly, the researcher
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interprets the findings and its essential meanings and combines them into an insightful and unified whole.
The Essence of the Phenomenon of Living With Dying
The essence of the phenomenon of living with dying for patients in the hospice emerged through the five stages of heuristic analysis of the participants accounts. Team members perspectives were understood from their viewpoint as doctors, nurses, social workers, counselor, and nurse-aides. The doctors and sister nurses stressed the importance of pain and symptoms management as it related to the patients quality of life. The sister nurses also highlighted the patients spiritual needs. The nurse-aides realized the importance of hygiene, comfort, nourishment, love, and support as impacting on patients adjustments to the grave situation and to their moods. The hospice social workers and the counselor took the control of pain and suffering for granted and focused on social and emotional needs and distresses as important to adjustment and quality of life. Among the social workers, the experiences of caring for the dying varied depending on their skills and aptitudes. The counselor realized the importance of regular interactions with the patients to gain insights on their distresses and needs. The participants understanding and perception of patients experiences similarly were diverse but when viewed as a whole what emerged were vivid and rich descriptions of the phenomenon under study. These descriptions were used to develop a structure or pattern of relationships that organized the phenomenon of living with dying into a unified whole, with an emphasis on discovery and illumination.
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Quality of Life Themes The essential findings of this study are illuminated through six Quality of Life Themes that were created or constructed by the researcher to synthesize the meanings and essences of the phenomenon and describe the issues that challenge hospice patients in the three periods of living with dyingacute-crisis, chronic living-dying, and the terminal phases. The essence of these themes which highlight the human interactions in the hospice that develop in a temporal sequence are explained below. Limitations and control. Humans would like to achieve complete control over the whole of their lives, but this is not realistically possible, there are limits to their influence. However, it is possible to understand and appreciate where and how influence can be exercised most effectively and to accept that although life is transient, it can be good. Palliative care in the hospice facility is dedicated to the goal of ensuring that dying persons maintain whatever control is possible during the final days of life with a focus on effective alleviation of pain control of symptoms. Terminally ill cancer patients arrive at the hospice in physiological distress and cannot achieve or maintain control because they are suffering, extremely anxious, and frightened. Part of living with dying is coming to terms with what can and cannot be changed such as the fact that death is inevitable and suffering and losses of many kinds impact on quality of life. One of the greatest fears of dying persons is not death but the pain and suffering that accompanies it. Comprehensive physiological care in a supportive environment gives patients some perception of control within the limitations of their disease.
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Vulnerability and resilience. Terminally ill patients are vulnerable to dying and have a broad range of physiological and psychosocial needs and concerns. If these needs are eased, quality of life is enhanced. Living with dying also teaches about resilience, the strength and capacity to bounce back from pressure and shock. They become fortified when given attention and their needs are recognized. Dying can expose the boundaries as well as the potentials of the human spirit; it can reveal the fact that humans are capable of facing death and responding to its reality in ways that can be noble and awe-inspiring. Individuality and community. The shock, pain, and anxiety of the knowledge of imminent death potentially take away valuable transaction with others, leading to isolation. A persons significance and meaning are dependent on his relationships and communication with others. Although dying is lived out in individual ways, patients who are coping with physiological and psychosocial challenges and distresses of living with dying need help to sustain authentic interpersonal relationships and social ties, which can effectively reduce stress and improve quality of life. Managing psychosocial distresses. This theme describes the pressures of dying that include emotional distresses and concerns, unresolved issues and unfinished business, and problems with relationships that underscore the preciousness of living. Patients in hospice are given the support and care they need to gain some degree of control and improve authentic communication and resilience. Coping with distresses is an individual endeavor. But by reaching out and sharing these concerns, patients receive help to gain a clearer perspective of the reasons for their distresses and a realistic appreciation of what is possible and what is not. Letting go of the past and not dwelling on what could have been allow them to focus on what can be changed.
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Making each day count. This theme embodies how patients experience living with dying. Kelly (1975, in Corr et al., 1997) seized upon the prospect of his own imminent death to found an organization called Make Today Count, a three word motto about the importance of maximizing present quality of living when death challenges the values of life. Patients are driven to find purpose, meaning, and fulfillment in each day that they are alive. When death challenges life, humans search for sources of inspiration and frameworks to find enduring meaning in their lives. It rests on faith that life is ultimately good and is confident that life can be meaningful. Acknowledging the horse on the dining table. Kalish (1981, in Corr et al., 1997) asked an ancient sage what a dying person feels when no one will speak with him or be open enough to permit him to speak about his dying. The sage explained that death is the horse on the dining table that visits every house. Its presence makes you wish to leave without speaking of it. If you leave you will always fear the presence of the horse (p. 3). However, he said that if you speak about the horse gently and kindly, most others will speak about it. It will remain on the dining table but you will not be distraught and can enjoy your repast and the company of others. You cannot make magic to have the horse disappear, but you can speak of the horse and thereby render it less powerful (p. 3). Patients do not want to die, neither do they want to know that they are dying nor have to face death because they are still living. It is frightening to face death until we are ready, and it takes time to adjust to it although hospice patients are tacitly aware of its eventuality.
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A Developmental Model of the Phenomenon of Living With Dying in Hospice Patients The six Quality of Life Themes in the phenomenon of living with dying are graphically depicted in a developmental framework (see Figure 3). The patients whose experiences of living with dying are described and illuminated in this study live in the safe refuge of a hospice and receive compassionate palliative care from a multidisciplinary team of caregivers. Their experiences are observed to follow a developmental framework starting with the event of arriving at the hospice with high anxiety, responding to the palliative care and support and gaining control, and depending on the team and hospice community for their psychosocial needs. They then gain resilience to manage psychosocial distresses in a supportive environment, search for purpose and meaning in their lives, and accept death in the terminal phase. Confronting imminent death and coping with dying are experiences that affect the hospice team who care for these patients. Significant issues regarding team members personal involvement, skills, and resources to effectively support and care for patients are imperative to the phenomenon of living with dying. These include their views on relationships with the patients, their ways of managing the stress of caring for the dying; and their adjustments to the death of patients they have come to know. Pattisons (1977) temporal model of The Experience of Dying (see Figure 2) is pertinent in describing the findings of this study, as are Dokas (1993) tasks outlined for the terminal phase of living with life-threatening illness. Both have consequently been utilized to formulate a developmental model that appropriately describes and illuminates the themes of the phenomenon of living with dying in terminally ill cancer patients in a hospice facility.
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Peak anxiety
Transition from * Limitations & curative therapies Control to palliative & * Vulnerability & supportive care Resilience * Individuality & Community
* Managing Psychosocial Distresses * Making Each Day Count
Point of death
*Acknowledging the Horse on the Dining Table
Acute Crisis Phase
Chronic Living-Dying Phase
Terminal phase
Figure 3. A developmental model of the phenomenon of living with dying in hospice patients. __________________________________________________________________________ Note. Adapted from Pattisons (1977) The Experience of Dying Diagram.
An Exposition of the Quality of Life Themes
The actual phase of living with dying begins when medicine can do nothing more to reverse a fatal condition and preserve life and traditional curative therapies no longer restrain the progress of cancer disease. When cure is no longer possible and when disease
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burden causes undue patient suffering, a peaceful and comfortable terminal period and death in hospice are recognized as valid goals of modern health care. Limitations and Control Comprehensive physiological care in a supportive environment allows patients to gain some control within the limitations of their disease, because when in pain and discomfort, patients can think of nothing else, says Palliative Care Doctor Lal. The challenge of physiological distress and dying. The fact that the patient is at the hospice is because the doctors have realized that he hasnt got any time left and they have been sent to the hospice for palliative care for pain, wounds and symptoms, says social worker Mohan. This is the context in which cancer patients arrive at the hospice. Patients deal with the transition to hospice in many different ways depending on their mental makeup. Some refuse to come into the hospice initially, comments Sr. Hope. Patients feel lost, disturbed, unhappy, upset and depressed and say, If I come here, I will dieI want to go home and die. Patients are anxious, fearful, tense, and worried. You can see it in their faces for the first few days. They are very frustrated and fight against accepting either the cancer or that the illness is terminal, comments Sr. Charity. Social worker Prita notes that patients have to leave home, children, family, and loved ones when they come here. They are unhappy, withdrawn and quiet and cannot share their problems. The patients may not have slept or eaten for days or eliminated their bowels. Some are so weak they are unable to talk, walk or rest. Many patients are brought with maggots, infected wounds, the intolerable smell of rotting flesh and intense pain that makes them anxious for their lives. Patient K. was in intolerable pain, and the smell from her infected
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growths was nauseating for her. She begged the sister nurse to end her misery with poison. Pain affects quality of life and patients are unhappy and cannot think of anything else, says Dr. Lal. The hospice teams interventions. Palliative care ensures that dying persons maintain whatever control is possible during their final days of life and aggressive management of pain and symptoms is the focus of care when patients first arrive, explains Dr. Lal. We will not let them suffer. Here we do not react to the smell. We continuously clean and change the patient so he or she doesnt have to bear it much, says Sister Hope, and they get pain relief and control nausea and vomiting, and their elimination functions are settled. However the doctors and nurses are aware that they cannot always control the symptoms and pain as disease advances. There are ongoing problems, and we recognize our limits. Palliative surgery is not an option for most of these patients, either because of their health status or lack of finances. The medicines give temporary relief of symptoms and withdrawal of treatment will make the pain reappear, unlike in a hospital where symptoms and pain are temporary, confirms Dr. Rati. Emotional support for the distressed patient and family comes from the nurse-aides and social workers who reassure them to feel free to call and ask for anything they need. We give them a lot of support and once the pain is controlled they begin to relax. The nurses aides play a pivotal role in caring for the patients physical routine and hygiene needs and the Sisters depend on their support. These girls work cheerfully and willingly. Their work is dirty cleaning, feeding, sponging and they do it with love and without complaining. They may feel emotional but they are stronger than us.
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Caring for dying patients is not for everyone. No hospital staff nurse could do this work and young doctors and novices find it hard and ask for transfers, explains Sr. Faith. Dr. Lal comments that it is the comprehensive care from the team that allows patients to exercise some control and influence over the course of their lives. The hospice as a place where there is no pain. Dr. Lal, who also works in
active cure cancer hospitals, voices what all team members mention about the hospice facility, I appreciate the opportunity to give comprehensive palliative care for the terminal stage of cancer and do something more than tell them that the cancer disease is too advanced, nothing more can be done. These patients are still living and in urgent need of in house treatment for pain and symptoms. Patients response to palliative care. Social worker Abha recounts her initial concern when she took her mother to this hospice because of the implication that she was dumping her mother there rather than taking care of her at home. Seeing the place and facilities, however, satisfies most people, and her mother was happier here than she had been since she got cancer. Other participants have found that patients are grateful and relieved to find this place when they need it most. Factors that help to change the patients initial perspectives about the hospice as a place where they come to die and also help them to quickly adjust and feel at ease about being there emerged from the data: (a) Pain and symptom relief improves appetite and sleep and calms the body; (b) Being accepted even though they smell and have ugly wounds improves mood and self-concept; (c) Nursing care and social support reduces their helplessness and distress; (d) They understand that they are in need of help and are receiving it at no cost and with no complaints; (e) They have also found joy, caring and
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love with emotional support from the team and many dont want to go home; (f) Patients feel protected, comfortable, less frightened and safe. The attitude to hospice completely changes. Two or 3 hours later, after medication, dressing, rest, and food, Patient K, who wanted to die, was relaxed and calm, and she talked amicably about her suffering and problems but also about herself, her achievements, and her family. She and her family expressed relief and gratitude that the patient was pain-free and comfortable. It had seemed such a hopeless situation. However it has been noted that the educated patient feels less agitated than those who are uneducated and are from villages or destitute. They do not understand where they are and what is happening, and it takes them longer to settle down although most patients settle and adjust after the first day. Vulnerability and Resilience The moment a patient starts talking, it lightens his heart. When someone can listen to him, he can share his needs and receive emotional support, says social worker Mohan. Patients helplessness. Patients physical suffering is contained but they are still in shock, and this drains them of energy. All the participants agree that the comprehensive care from the team helps to ease the suffering of people who are dying and to make their last days easier. It helps each individual to recover from the shock and achieve quality in living by adjusting to transformations and changes. It also helps to diminish feelings of helplessness. Patients psychosocial needs and concerns and team members support. Many intervening conditions negatively affect the patients in hospice and compromise adjustment. There is much that is distinctive about individuals with terminal illness. The pressures of
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dying often underscore the preciousness of living. However, like all of us they have a broad range of needs and concerns, joys and sufferings, and hopes, fears, and anxieties (Corr et al., 1997). When they are distressed or upset they are not peaceful. They need attention and recognition of their needs because this improves coping with challenges and increases resilience, says the counselor. Sister Faith reiterates, All the patients needs are taken care of. The hospice staff bought everything a young girl, who was destitute, craved for to make her happy. Others in the last stages of life may ask for a drink, a smoke or special food and this is provided. We dont want them to feel frustrated. The hospice team spends time with all the patients, and is committed to give compassion, care, and emotional support, without selfish motives in a compassionate and trusting relationship. It is a difficult time for patients, and by being present the professional team compensates the need for social support and helps to keep their spirits up. From the perspectives of team members patients have diverse needs and concerns that are met in the hospice. These are the following: 1. An important need for patients is to be accepted as they are, emphasizes Sister Faith. Many people have an aversion to cancer and families sometimes turn away from them because of the wounds, pain, symptoms and the smell, that strong pungent smell of rotting flesh which is sickening even for the patients themselves. Patients are grateful and surprised when the team members do not move away from them, and this goes a long way in helping them become resilient.
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2. The counselor notes that most patients feel concerned about being a burden on others, especially family and this can cause maladjustment because of perceived helplessness in this situation. Patients are often apologetic to the staff and team, but they accept that they need the care and are grateful when they are reassured that it is part of the job. Sr. Faith confirms that the family does not have to look after the patients physical problems and needs in the hospice, and the patient can maintain his dignity. 3. The experience of social workers confirms that, emotional and social support is imperative for patients because they have to adjust to changes and face anxiety and distress. Drawing them out into a conversation and listening to them lightens their load, notes Mohan. They need to chat and meet people and really enjoy company, which distracts and engrosses them. 4. The patients need for caring relationships and interpersonal attachments that are non-confrontational and nonjudgmental is apparent. Eleven of the 12 participants confirmed this, Patients need to be accepted as living people and be related to authentically and genuinely. 5. An important issue patients discuss is the need for distraction and some meaningful occupation, according to the perception of social worker Sita. She comments that this would help them to cope and adjust to emotional and interpersonal distress, and I have found that it can subdue pain and sadness as well. When she spends time reading to them in the womens group, those in pain stop complaining. Dr. Lal reiterates that meaningful activities would make them feel that they are really living, no t waiting to die.
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6. Patients also need support and attention from their families. A sense of purposelessness has been noted when family members are too upset to communicate genuinely. They can be hurt and devastated when family members and relatives leave them at the hospice and do not visit them. The hospice team contacts families when this happens and encourages them to come. Many patients are destitute or come from far-flung villages and have no one to care for them here, and this increases their vulnerability. Nurses aide Nisha observes, patients do know that the team is there for them and takes the place of their family in giving support and care. 7. In the teams experience all the patients need to talk about themselves, their lives, and their achievements and sorrows and establish their identities. This indicates a need to be recognized and gives them purpose and meaning in this phase of their lives. It also helps to fulfill their needs for dignity, self-worth, and respect. The teams regular presence in compassionate relationships encourages this, and their acceptance renews self concept and dignity. 8. Patients need hope. When they feel much better once the pain is relieved, and they are able to eat and sleep, they hope to get well and go home. We cannot tell them directly that it is not true. When a patients condition stabilizes they want to get on with life. 9. Nurses aide Geeta and others agree that compassion, love and care is tangibly needed, and patients turn to the team for this when they are helpless. 10. Patients families sometimes have misconceptions about cancer and ask if it is infectious, and some dont visit or dont bring the children. This can hurt and devastate patients. Those who come are not always able to cope with the patients suffering. The team
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helps to clarify misconceptions and doubts and through their example families relate better to patients. 11. Achieving some influence in their lives is important, and they are given the choice and encouragement to go home and unite with the family, be with the children and some come back feeling better and rejuvenated. However, most patients go for very short trips because they understand that the comprehensive care is not possible at home, and they feel comfortable, safe, and less frightened here and dont talk of going home. 12. The effect of seeing a patient dying can be frightening and devastating to other patients in their vulnerable state. To protect those still living, the dying patient is moved to a private room when the process begins. 13. The patients need for dignity is maintained even during the process of dying in the privacy of the room where he can communicate with family, say his farewells, and follow the rituals and prayers of their own religion. The sisters and staff are close at hand to effectively and efficiently prevent suffering even as he dies. Other team members spend time with the family and dying patient, allowing them to ventilate their feelings. The hospice as a place that focuses on patients needs. The purpose of hospice is seen by team members as focusing on patients as individuals and giving them dignity and self-respect. In fact, patients who die at home may not be given so much care or respect at home. The philosophy of hospice care integrates all the needs, concerns and distresses of its patients and gives comprehensive care. For patients, day-to-day life becomes calm and peaceful. Everything is taken care of, there is no more struggle, and they are living free of pain and symptoms.
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Individuality and Community We give compassion and care to patients in their suffering. The relationship is intense as we listen and get to know and understand them. They have a new social circle, Sr. Charity explains. Consequences of cancer on the patient and family. Cancer affects the whole family and disrupts their lives. From the data, it became clear that some family members are not always able to cope with the patients suffering, mood swings and their needs and withdraw, while others refuse to accept that their patient is dying even though he has come to terms with it. He is not able to get the support he needs to deal with the issue as the family will not allow him to talk about it. It has also been observed that some family members do not have the courage to come because they get upset and are more hurt because the patient is suffering from cancer or because of misconceptions about the disease. Some families leave their patient and never come back to care for or visit him. They come from problematic families. Then there are patients from broken families who do not inform their families either of their disease or that they are in the hospice, or they do not allow certain members of the family to visit them. The family can also upset the patient with their grief and crying instead of giving them love and happiness. It has further been observed and understood that patients who are at home cannot receive compassion, care, and support consistently from families who are busy. The hospice as a social place. This data explains why terminally ill patients, for whom family is not always present and caring and may not be a source of comfort and support, turn to the new community of the hospice for socioemotional support. For the patients, the hospice is a social place where there are activities and a community of people
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that includes the patients, their families, and the caregivers in hospice. As Mohan says, The patients find a whole new social circle. Team members agree that this helps to distract patients from their problems and improves quality of living. They live here for months and this becomes their life. Their birthdays, and festivals are celebrated, outings and programs are organized, and they enjoy themselves, often participating with poetry or singing. Patients who are at home may not be treated with as much respect and looked after as they are in this hospice. Social and emotional support from the patient community. One of the strategies that influence patients coping and resilience in hospice is the fact that they are among others who have the same disease, problems, and suffering. Participants outlined the advantages and problems with this. The hospice team agrees, Being amongst others who are dying and sharing feelings about this improves emotional adjustment. All the patients have liked being here; they feel less isolated as they are not alone in their suffering and have the same problems, and this encourages them to take things in their stride and reduces their fears and distresses. They get and give support, solace and encouragement to each other and recover from their sad feelings. The womens group of patients is cited as an example. It consisted of 6 to 12 women, including patients and family members, at any given time and functioned effectively as a social and supportive group. The women usually met in the garden and sat in the sun during winter. They ventilated feelings and frustrations and soothed each other when the sadness, pain, and grief were too much to bear. They shared their lives, memories, achievements, and family issues such as problems with daughters-in-law. They remembered the important role they played in caring for the family and how they can no
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longer do so and are in fact dependent on them. My husband and son would never buy sweaters and would only wear what I knitted for them but now I cannot knit anymore. Food and cooking was a passionate subject. Most felt concerned, as they couldnt anymore cook their familys favorite dishes. They shared recipes and boasted about their prowess. Clothes, make up and jewelry, were passionately discussed as were the problems with hair loss and beauty care. These regular get-togethers involved them with others, distracted them, and reduced distresses as it does the men who often get together to play cards or watch a program on TV. Patients who are not bedridden make it a point to help others with medicine and dressing up. Patients become sensitive to the distresses of others and make every effort to help them. Patients and their families visit each other and the community is enlarged. Patient X was very quiet and withdrawn. She either slept or prayed compulsively the whole day, preferring to stay in bed and not mix with other patients. She denied she had cancer and blamed the oozing in her cancer wounds on the nurses tardiness. Patient C, with humor, patience and tenacity got sleeping beauty (as he called her) out of bed and soon she became a part of the community. Patient N, a 13 year old, spread the fragrance of life to the other patients, comments Sr. Hope. She never complained and instead she moved around the wards cheerfully in a wheelchair chatting with the others, coaxing them to eat or go out to the garden. Living with others who are dying helps patients and the relatives because they share the same sort of grief of seeing death in their family in the near future. In fact, because of these experiences patients and families gain courage to recognize death as a natural part of life and face the reality. Social workers feel that there is also a downside to this situation.
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It can be disheartening for other patients to be with people who are dying as it reminds them of their own mortality. Patient S said, My heart is small, I get frightened. It is also very difficult to watch the suffering of a patient they have befriended. It upset them a lot when Patient Ks suffering could not be contained and prayed that she die. Patients lives take on purpose and meaning as they live day-to-day amongst others who suffer in this new community. Relationship between patients and the team and response to team care. Another strategy that can influence how patients adjust is the presence of the team who form relationships with them. Kubler-Ross (1986) spoke of the need to be in a caring one-to-one relationship with the dying. All participants expressed the relationship that develops in different ways. Says a nurses aide, I treat them like mother and father and care for them. They give me love too. Sr. Hope even reiterates, I can see Him in every patient and welcome God and thank Him. The counselor explains, I am involved intimately as I provide a safe contact with no expectations or judgments, and I develop compassionate and caring relationships with them. Sr. Charity finds that patients come in great pain and suffering and I give them love and compassion and without introduction become close to them. One doctor agrees, Relationships and attachments tend to form with patients in hospice. It is not a personal relationship; but it is different to relationships with hospital patients. Social worker Sita says, I try not to form deep attachments with patients as it might disturb my family life. But they get to know me and need me as much as I need them. Social worker Mr. Mohan cautions, I dont want to form personal relationships as I get involved only with those persons then. However a relationship based on getting to know each other does develop. Social worker Prita confirms passionately, I have more love for
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them than I have for my own family. I am really attached to patients who give so much love and warmth and ask for so little in return. I enjoy meeting them, giving a massage, or doing their hair. We talk, hold hands, and laugh a lot. It makes me very happy. I do form relationships and become attached and close to these patients. Social worker Abha comments, It helps a lot to be in a real, personal relationship with the patients. This is the only way to really understand their problems. It becomes easier to distract them when they are upset and share their problems. They give many blessings in return. The data elicited team members reasons for being involved in hospice care for between 3 and 12 years. Sr. Hope comments that everyone is not able to work in hospice and many try and get upset and do not return. Involvement exposes them to stress of caring for those who are dying. Different reasons have been cited for their continued involvement. The nurses aides always wanted to help people and feel that even though patients cannot be cured and it is difficult to see their suffering, the love, help and care which we provide makes our job worthwhile, important and necessary. They know they bring some difference to the lives of dying patients and in return learn so much through their courage. Patients laugh and chat with the nurses aides and give them parental love. The Sisters of the Holy Cross feel privileged to be at the bedside of the dying because of the joy and peace they radiate and the assurance and security patients feel. Although they had reactions initially to this work, it is the patients appreciation and confidence in our care that encourages us to continue. Patients live with cancer that hurts, deforms and cripples but still give affection and gratitude. Their endurance and courage in their suffering is a learning experience.
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The doctors find it satisfying to work in palliative care, as it gives pleasure that we can continue to care for patients for whom cure is not an option anymore, specially as before the hospice opened there was nowhere to send the patients for continuing care. Patients value everything and have confidence in us and that encourages us to give more to these people who are totally dependent. Dr. Rati comments that initially she did not like losing a patient. After all as doctors our job is to cure them. Two social workers have had personal experiences with cancer and dying in their family and one was a caregiver for her mother in the hospice. The other two persons have been involved in some form of social work for a long time and have an altruistic bent of mind. The counselor who cared for a dying mother at home considers the work rewarding and satisfying, because I have learnt how very much can be done to make life pain-free, comfortable and happy for these patients. Patients are friendly and cheerful against all odds and this courage, resilience, warmth, and affection has enriched me. The team members also receive as much love, blessings and concern as they give, and this motivates them. Patients notice our absence and look forward to the next visit, says social worker Prita. Most realize that patients appreciate that there is recognition and attention being given to their needs, concerns, and distresses, and this strengthens them. When patients are encouraged with love and compassion to have hope, to eat, to talk, to get up, it lightens their load and keeps their spirits up. Encouraging patients to share their problems and needs makes them feel valued. These patients are here for such a short period and they live a totally different life to their lives at home and yet they are so caring and giving. It is one big family at the Ashram, says the superintending Sister.
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Managing Psychosocial Distresses These patients are living people who have problems. The pressures of dying have underscored the preciousness of living, stresses Kalpana. Hospice care and support provides the safe refuge from pain, symptoms, and wounds, thus increasing control. Adequate attention to patients needs with emotional and social support and community living improves their resilience, and they begin the task of facing and coping with demands and distresses and confronting the realities of their situation. Coping with dying is also a challenge to others, the family, and the hospice team. Reasons for psychosocial distress. The data elicited the presence of a number of distresses and problems from all 12 participants. However there is general consensus that patients get distressed because of a specific reason and when that issue is dealt with, it leads to adjustment, Additionally, Abha stresses that patients do not want sympathy and they cope and adjust to their problems very well and deserve respect for that. Sr. Charity and Dr. Lal were of the opinion that depression has not been significantly apparent in the hospice and one reason could be the fact that a lot of patients dont know they are dying. Dr. Lal also feels that most patients maintain their composure and would appear to be coping well. Similarly it has come to the notice of caregivers that even though patients have distresses, anger is not usually apparent, except for some rare cases, and instead they find most patients very peaceful. The following were found to be the major reasons for psychosocial distresses: 1. The physiological distresses, which cause psychological distress and restrict a patients capacity to cope are uncontrollable pain and physical deterioration with disease progress, such as paralysis or invalidism which when it occurs comes as a shock and
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distress, depression and a sense of hopelessness become apparent. Dr. Lal clarifies that of the patients in physical distress, patients who only suffer pain without symptoms or wounds cope best, compared to those with infected, ulcerated wounds, or respiratory distress and other complications. 2. Although patients in hospice are well fed and taken care of and there is no pain, Sr. Faith feels that they cannot be happy and relieved, there is always some emotional distress and anxiety. Unresolved issues and unfinished business can burden them because in their vulnerable state they cannot do anything about it. Patients remain particularly anxious about the welfare of dependant, young children, and family. Patient S, 18 years old, was anxious and concerned about the welfare of his young sisters, as he could not support them any longer and he was angry because his father was not taking care of them. They had to live with relatives where they may be mistreated or even abused. 3. Problems in adjusting to cancer and dying cause negative affect. These patients, though few, are difficult to handle and can become very unpleasant, recounts Sr. Faith. They may continue in this manner till they die. 4. Hospice patients have to cope with the loss of the lives they used to live, disruptions and transformations in personal, social and work relationships and suffer a lot of anxiety as they try to cope with these irreversible changes. 5. Reliance and dependence on family and others is difficult to cope with and personal problems with family are seen to cause the most distress. Patient Ks children had become estranged from her and this continued till she died. She did not have a daughters support. Her husband had begun another relationship before she died and although he came to visit her she received no emotional support.
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6. Some are distressed about being away from their homes which makes it difficult for them to settle in the hospice. This is especially poignant for women who live in farflung villages and have been brought for treatment to Delhi. Their physical condition necessitates living in the hospice, and they cannot go back home. 7. Contemplating their lives is upsetting and patients go through a process of frustration and self-pity till they are able to share their stories and get involved in the life of the hospice community. 8. Psychological distress accompanies being abandoned or rejected by family because of misconceptions about cancer. Many patients wish and hope that their families will visit, often making excuses and finding reasons for why they dont and it is only later that they are able to stop rationalizing and reach out to the hospice community. 9. Fear of death and giving up hope has been cited as a major cause of distress. How patients cope. Patients learn to cope with the challenges of their condition through various ways: 1. Gaining new perspectives about the problemPatients cope in individual ways to understand and gain insights into problems this usually alleviates distress, notes the counselor. Patient S wrote his life story and shared his concerns with anyone who would read it. The emotional support helped him, as did talking to the counselor. Finally he realized that though his sisters had been informed of his condition they had not written to him and he decided they must have been getting on with their lives. He accepted that anger at his father would not change him and though he hoped that the situation with his sisters would improve, he had done his best while he could. He settled down and became an integral part of the hospice community and concluded that he was lucky to be here where
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everything is taken care of in a clean place with wonderful people in it. When we patients have everything why are we upset or depressed? Patient R, a poor houseboy who was bedridden, was consumed with anger and a sense of betrayal because his brother left him on the pavements after stealing the money for his treatment. He felt he would have been cured. He finally accepted his terminal condition and the fact that he was well cared for in hospice. His crying and distress dissipated. He concluded that he had helped his family with the money. 2. Sharing the problem and asking for helpThe hospice assists practically in many ways with unresolved problems. Patient D was frightened for her daughter, a young woman, who was alone in the province and informed the sisters who arranged for her to come to the hospice. She gave responsibility of her child to them and died peacefully shortly after. This young woman is a trained nurses aides now and working at the hospice. A destitute woman with six young children asked for Mother Theresas mission to take responsibility for her family and this was organized for her. She died two hours after signing the papers. 3. DenialFour team members noticed that some patients cope by hiding their helplessness and despair in belligerence, mentally switching off, becoming obsessively prayerful and sleeping a lot. Mohan feels that some give up on life because of their distresses. This situation does not continue for too long as it comes to the notice of caregivers who try to draw them out and encourage them. 4. Passage of timeWhen patients have lived with cancer for sometime and have suffered they have no more tears to shed. They have got adjusted to it.
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5. Social and emotional support from caregiversSocial worker Abha and the counselor reiterate that patients have many problems and distresses and a fear of death but the important thing that they realize is they are living, free of pain, comfortable and supported emotionally and socially by caregivers and others in the hospice, and they adjust and cope well and do get on with day-to-day life quite peacefully. 6. Being grateful for the careMany have major damage to their bodies like the patient whose cheeks were eaten up with cancer. He couldnt eat, or talk, and the cheek would never heal. He was in misery and in no condition to go home. In all this suffering he gave the staff love and gratitude, greeting them cheerfully, recounts Sr. Hope. 7. Being resilientPatients who coped well with the challenges of life may cope better with dying. This has been noted by two team members. When distressed these patients may be angry, or sad but after a while the emotion settles down and they come out of it. Their resilience amazes me, as does their will to feel good. 8. Giving others support One of the ways they cope is to do things for others and give each other support. Patients in the womens group rallied around a member who was withdrawn and subdued or upset. 9. Receiving attention and the recognition of their distress from the teamThe counselor perceives this as an invaluable factor in improving coping as it validates their experience. 10. Having activities and distractionsWhen patients are distracted with company or activities, and things to do, their sorrow and distresses get subdued, reiterates social worker Sita. The hospice is a social place with things happening around the patient to distract him.
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11. Listening and allowing the patient to talk about his problems gives relief, reiterates the counselor, and all the participants agree that this rather simple activity produces great benefits. 12. Letting goPatient R and Patient K lived by the motto, Why lament about the past? We must move on and let go of what has happened. Both had a lot of unresolved issues but would not be able to deal with them and though they spoke about them they were not distressed. 13. Being with people in the same conditionPatients deal with stress much better in the hospice than at home because they are amongst others who have grief, suffering and distress. Helping patients cope with their personal challenges. The sisters and doctors have observed, patients try and live better lives in the hospice. Control of pain and symptoms and social and emotional support for their distress gives them the courage to live. In many ways their struggle is over. However some distresses can overwhelm even the well adjusted and cause deterioration and death such as Patient X, an erstwhile alcoholic, who was severely disfigured, lived happily at the hospice and was well loved. After the festival of Diwali, during which he danced and sang, he insisted on going home to visit his family. Their rejection of him left him angry and bitter and he died shortly after. Patient R, also an alcoholic before he contracted cancer disease, died 2 days after he found out that his wife had taken another partner, even though his condition had been reasonably stable at the time.
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The following are strategies used by team members for helping patients to cope: 1. Patients feel supported when they are encouraged to make the most of it and fight. 2. Sharing coping strategies with them may help. 3. When patients withdraw or get emotional, humoring and distracting them helps to contain the distressful feelings and they invariably share their problems. 4. The vigilance on the part of the hospice team to keep them pain free, understand how each patient copes and be aware of the sometimes overwhelming feelings makes them realize that they are valued and improves their self-concept and resilience to facing their challenges. 5. The social workers stress the importance of making patients open up so they can share problems and lighten their hearts and reduces isolation and loneliness. 6. The counselor found that the only way to understand what is going on with patients in distress is to be empathically present and enter their life themes. 7. Patients have to live through their distresses, sorrows and grief and emotional adjustment can be achieved with emotional and social support that is available for them for as long as it takes. Allowing them to ventilate feelings and share emotions and reflecting with them helps to identify distresses and face them. 8. An authentic and compassionate relationship is therapeutic. 9. Within the womens group the patients are finely tuned to each others moods. We encourage her to sing or talk and it works like magic, says social worker Abha who is an integral part of the group and uses it effectively to allow patients to share their problems.
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The hospice as a safe refuge. In the hospice, patients needs are taken care of. Team members are in agreement that when routine and physical needs such as medication, food, dressing of wounds, removal of maggots, and control of smell and pain are taken care of on time and without patients having to ask for them, their day-to-day lives are peaceful and comfortable. The nurses aides get to know their eating habits and serve their food accordingly. They are vigilant and keep an eye on them so they can take care of them without the patient asking. This compassionate and understanding care and encouragement helps patients to adjust to their helplessness and feelings of being a burden. The family does not have to care for the physical and routine needs of patients. When patients are distressed the Sisters spend time with them or inform the counselor or social workers to help them out. Distracting them by reading to them or drawing them into the group or even giving a massage helps as they stop pondering over their problems, says social worker Sita. Team members coping with caring for the dying. Just as the patients must cope with their distress of being terminally ill so does the team need to cope with distress of caring for them as they suffer. Many factors affect coping as perceived by the participants. Dr. Lal makes an important observation. Full time palliative care staff can suffer emotional distress. Caring for dying patients constantly is stressful and disturbing at times because of the suffering even though pain is controlled. The sisters dedication to the work and their prayer life help them, but it can be overwhelming when there are a lot of very ill patients or many in the process of dying. They are always available day and night to ease pain, and sorrow and support the dying process, says Abha. The sisters did not comment on this problem. They are relieved of their duties for holidays and attend other official
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business as well. However, because the team and the patients also rely on them, it can become a strain. The nurses aides work on rotation on ward duty and do other jobs not involving contact with patients. The sisters say that the girls are more resilient than others even though they can be emotional. When we are upset we talk to each other and the sisters and feel better. The counselor found it exhausting in the initial months, not only because I spent many hours at the hospice everyday but also because of the intensity of patients shared experiences. Coping with seeing others suffer can be difficult, but seeing that they are receiving care and support lessens the burden. Being detached, though not distant, even when fully present with a patient, helped, as did organizing schedules with patients and meeting others for light everyday conversations. Dr. Lal does not get distressed because he does not work full time in hospice. Dr. Rati doesnt feel that the work is stressful but admits that when a patient is in pain or dying, it upsets her and my family finds me depressed. She is teaching medicine, which does not involve patients and this distracts her. Some team members, especially the social workers, are involved in other work and live outside the hospice. This helps to distract and channel their mind in other things, although there are times when their families notice that they are withdrawn and upset. Abha is a dance teacher in a school and that takes me into another world. She also cares for abandoned animals and has varied interests and hobbies, although she spends the most time in the hospice. Sita, Mohan, and Prita come to the hospice once a week and the first two maintain a detached concern by not getting into intense relationships unlike Prita, who then
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takes care of my sad feelings by sharing them with the Lord. Mohan adds, that because he doesnt develop personal relationships, he is able to cope, and also he helps patients with practical needs such as bank work or finding jobs for family members. The general consensus is that patients appreciation, gratitude, and concern for the hospice team are motivating factors in coping. The relief gained by the patients encourages the team immensely. The team members give each other moral support and share thoughts, feelings, and grief. Coping with deaths in the hospice. How are patients and team members affected by death in the hospice? Through the participants perspectives an insight was gained into how patients are affected by the deaths of other patients. The death of a patient in the hospice reminds patients of their own limitations, vulnerability, and mortality. It can be disheartening for them, says Prita. Sr. Charity concurs that it is very difficult for them to accept it. That is why we try that they should not know. They mourn as if a family member has died. They mourn each death because they have made friends. They say that they know they will also die. Who knows when4, 5 days? So they must joke and pass the time, comment the nurse aides. Patient S says, my heart is small but I am frightened. They hope they can die without suffering and pain. Some patients watch the suffering and deterioration of their friends and pray for them to die and have peace. Those who are well enough and notice that someone has died share their feelings with the staff, caregivers and family. However, death is a part of being in the hospice and they have to live with it, agree team members.
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Team members are also very affected by death and try their best to cope. Nine of the 12 participants addressed this issue and confirmed that the death of a patient upsets them, especially those who have been there a long time. Hospice patients cannot be cured and are in misery with cancer disease and the wounds and growths that disfigure and incapacitate them. Death brings an end to their suffering. For the sisters, there is grief and pain, but other patients are living and need their care so we dont allow ourselves to become overwhelmed, however, Sr. Charity admits that she feels as if a parent has died. I am not able to see the patients dead body or talk to the family members. When there are too many deaths in the hospice, Holy Mass gives her a lot of strength, as does prayer. Sr. Hope says that she feels the patients suffering and is upset with that because a prolonged life with intolerable suffering has no meaning. When they die they have no more suffering. She continues, I feel people become happy when they are ready to die, like the lady who asked her to play her favorite song and then said, I am ready and died shortly after. The counselor says, For the patients I have known, their deaths have been a release from suffering but their spirits were not broken. Nothing could reverse the damage cancer had caused to their bodies, but in the period that they lived with dying, these patients coped with resilience and courage and seemed to be ready and peaceful to die. Dr. Lal says, Personal feelings should not overcome us in our work. Dr. Rati admits to being upset with the death of a person she has got to know. She initially did not like this aspect of losing a patient in hospice. After all as doctors our job is to cure patients. Abhas selfless service three times a week leads to very close relationships and she mourns the deaths. There can be pain and the need to detach and renew the self. This
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is especially the case with the members who do full time palliative care because the intensity of the work can upset and disturb. The counselor relates that a personal experience with dying made her realize that though death is inevitable and imminent, what is important is the quality of life of patients as they live until death. The living with dying period can be made comfortable, interesting, and joyful when patients let go of how their lives were and be open to what is happening around them. While they were cared for, valued, accepted, supported, and protected from pain, suffering, and fear, one cannot forget about the changes, and strength, courage, and resilience they developed to cope and especially the wisdom, love, and care they gave in return. Making Each Day Count Cancer makes people go crazy. We all should eat well and relax. What I have is just a boil; I hope it will burst outwards. If it goes away I will be healed and then I know what to do. I am so lucky to be here where everything is taken care of. I have no tensions. They give us anything we want. This is a clean place with wonderful people in it. So when we patients have everything, why are we so upset and depressed and anxious? Shailender, one of the hospice patients, stresses the importance of living each day to the fullest. Patients have to face the final challenge of living until death and find meaning and fulfillment in each day they are alive. Sr. Faith says, Palliative care, through pain control, social, emotional support in a safe refuge promotes adjustment and a peaceful day-to-day life, although individual differences in facing life play a large part in the outcome. Sharing memories from the past and hopes for the future gives purpose and facing the challenge of living with dying with courage and endurance results in a sense of fulfillment,
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notes the counselor. The perceptions of the team are that when death challenges the values of life, patients realize the importance of maximizing quality of living. Hope. The data that emerged suggests the presence of hope. Denial may be more apparent but hope is always there, as Dr. Lal expresses it. Prita feels that those who dont know live with hope. Patients need hope. Even though they accept that they are dying, they hope to go home, to die without suffering, to get one last chance to do the things they want to do. Some patients may have accepted death, acknowledging the bodys condition and their helplessness, but when they see other patients apparently improving, they hope for one more chance. I want to live for myself and do the things I want, said Patient C whose family had deserted her. Most patients live in hope that they will get all right especially when symptoms are relieved. They make plans for the future about going home, coming to help in the hospice. Dr. Lal sums it up eloquently, Hospice care gives them hope, not for cure or prolongation of life but hope for better living, for quality of life till death. Nurses aides Nisha and Geeta are of the impression that patients accept and also agree their living and dying is in Gods hands. However, many say they are feeling better because there is no pain and they are able to eat again and soon they will go home. It is not possible to directly tell them this is not true. Hope is very important, says Geeta. In fact, we encourage them by saying they will get well soon even if they know they are dying just to cheer them up. The hospice as a peaceful place. Turning to the participants constructions about how patients who are dying live in the last stages, consensus was reached on most issues. It became clear that the comprehensive and compassionate care in hospice where patients live comfortably and peacefully ameliorates their physical and psychosocial suffering and
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distress. The hospice has been described by Abha as heaven for the very poor where everything is free, medication comes on time, and their physical needs are taken care of. A safe refuge for the middle class when they need it most and they are grateful. Rich people come here out of choice and are filled with wonder at the selfless care and service given. They become a part of the hospice community. Challenges of living with dying in a hospice facility. Within this framework, the following are the participants constructions of how palliative care supports living with dying and promotes emotional adjustment and quality of life for patients: 1. Patients gain courage in the hospice to live better lives. Everything is taken care of and the struggle has ended. 2. Patients are a part of day-to-day life, without pain, and this improves the quality of living. 3. Life cannot be the same but social support and community living can become meaningful. Many healthy people do not have choices as well. Hospice patients live peacefully. 4. Recognition and attention for their needs and concerns help patients to adjust and enhance their lives. 5. Patients find purpose and meaning in the acknowledgement of their courage and endurance. 6. Patients tell their life stories and through this process gain an understanding and perspective about the meaning of their lives.
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Individual variations in coping with living with dying. The following themes emerged from the data concerning individual differences in adjustment and coping with dayto-day life: 1. Satisfaction of having lived life well improves adjustment. 2. Cancer gives people time to live until they die and to deal with needs, issues, and concerns. 3. Long-term patients find it easier to consider the hospice as home, although they remember the things they will miss and the things not done. 4. Poor patients acknowledge the comforts of the hospice and this reduces their worries about dying. Others are grateful and relieved with the care that they need and the support they receive selflessly. They become part of the community. 5. Time improves adjustment for those who have lived with cancer for years and it has been observed, when patients are relieved for symptoms they try to live better lives. 6. Patients who have faced the challenges of life well are better equipped to face the challenges of living with dying. 7. Frustration accompanies the limitations of what is possible in their lives. Adjustment has been observed when patients are relieved and grateful for each day that is pain and symptom free and this makes day-to-day life calm and peaceful. 8. Distractions and meaningful activities help to subdue emotions and distress, relieve preoccupation with pain and suffering, and allow patients to get on with living.
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Acknowledging the Horse on the Dining Table Living and facing death at the same time is difficult. Patients dont want to look death in the face. They need time to adjust to the idea because patients are frightened of death until they are ready. The words of Sr. Faith rings true for all. Patients dont want to die and neither do they want to know that they are dying or have to face death because they are still living, reiterates the counselor. A dying person is a symbol of what humans feardeathand that can be frightening for family and others. This constrains speaking of death and permitting the patient to speak of it. Honestly allowing the patients to speak about death when they want to without giving false hope or changing the subject, will not make death go away, but the unspoken fear will not upset him and his family anymore, emphasizes the counselor. Team members views on patients knowledge that they are dying. Contextually, doctors and patients in India do not talk frankly about death, comments Dr. Lal, unlike in many cultures, especially in America, where the patient is informed directly about his terminal condition and given the choice of going to hospice. Thus, in the hospice, only a small percentage of patients, usually the educated or more intuitive, accept that they are in the terminal stage and nothing can be done. They are realistic, and acknowledging death gives them a big release, comments Dr. Rati. However, the majority of patients have not been told, either by their doctors or the family. Sr. Faith says, by and large, most patients know that cancer is incurable, but humans are unable to confront it sometimes. They dont want to look death in the face and need time to adjust to the idea. After all they are still living and have to continue to live till they die.
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Patients awareness of imminent death. All 12 team members gave their perspectives of the patients awareness, denial, or acceptance of death. Dr. Lal feels that the majority of patients understand that they are incurable and being taken care of. In their heart of hearts, they know they are going to die, their disease is very aggressive and advanced. Living and facing death at the same time is very difficult. They dont really think or talk about death all the time because they live comfortably and are at peace in the hospice, observes Sr. Charity. From the counselors view, Some patients know they are going to die and are in the process of putting this knowledge into perspective to understand it. Most patients voice the hope that when they are dying there will be no suffering or pain. They have a lot of sorrow and grief and have to bear it. As mentioned earlier patients mention their deterioration and dying specially after a death in the hospice. Patient M commented poignantly, Look what all has happened to me, I have become so helpless. However, patients in hospice gain hope because of the control of pain and suffering and the care. All patients, at some point or another, mention they are dying but do not want a confirmation or denial of it. The counselor has found that they, however, will talk philosophically and in abstraction about it as evident in their asking about what is the soul and where does it go? or discussing their religions holy scriptures views about life and death. Gaining courage to accept death. Patients are frightened of death when they are not ready, and when they are ready, fear is replaced by acceptance. Sharing the same grief of dying in the near future with other patients, patients gain the courage to accept the reality of death as a natural part of life as they approach death, says Sr. Hope. Patient Shailender,
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quoted in the beginning of this theme, accepted his terminal condition very soon after he arrived at the hospice although as is the case with other patients, the element of hope was omnipresent. Denial. Living and facing death at the same time is difficult; most dont want to look death in the face till they can adjust to the idea, is the view of Sr. Faith. There are a few who resist death and remain angry, unpleasant, and distressed till they die. It is human nature that they do not want to think of this painful side and purposely keep it suppressed and live with false hope. They certainly deny what is happening to the world even though they may know better. When patients first come to the hospice it is the general consensus that it is difficult for them to accept that they are dying. They are frustrated and may sometimes deny even having cancer. Some refuse to enter the hospice and say that if they come they will die, while others believe the hospice is a hospital and they will go home cured, observes Sr. Faith. These patients are optimistic and in denial. Denial is useful as it protects them temporarily till they can handle, face, and cope with the reality. Patients need time to accept. Patients are frightened of death when they are not ready, and when they are ready, fear is replaced by acceptance and happiness, Sr. Hope muses while relating the experience of a patient who informed her that she was ready and asked for her favorite music. It is easier for them to face their terminal condition when a doctor tells them gently over a period of time when they are very sick as does Dr. Rati. However some feel it may be harsh to directly inform the patients, as they may get upset since they may not be ready to confront it. When they become resilient through care and emotional support from
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the hospice community they face the reality and then they get on with living, say the Sisters. Abha has observed that some of the poor and uneducated patients are philosophical and accepting about death. We all have to die one day. It is all right whichever way death comes. In the last stages, closer to death, team members have noted that death becomes easier to accept. In Sr. Hopes experience, Slowly, as patients deteriorate with disease, they get weaker, are unable to walk, or become bedridden and frail. They realize they are dying. Usually most patients accept towards the end and in the last stage that they are ready to die, confirms Sr. Charity. They give their accounts, sort out their tensions, and in fact, when their work is finished, they die quite soon. Some patients may get overwhelmed with the challenges of living with cancer and their helplessness in coping, notes the counselor. They tend to submit or resign themselves and become hopeless. However, I perceive changes when they renew their involvement, give concern and care to others, and live from day-to-day protected amongst people who are sensitive to their vulnerability and encourage and support them. Talk of death is more apparent when a friend in the hospice dies and they recognize their fate. They talk about it and admit, my heart is small, but I am frightened, observes social worker Prita. Though this disheartens them, it also makes them realize that their time is limited, and they should use it well. A few talk directly about death and ask for prayers, says Sr. Hope.
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Patients need to prepare for death. The necessity to prepare patients for death is recognized by the doctors. Another impression is that patients are in the process of being prepared to accept death but do it in their own time. Dr. Rati wants the patients to be prepared. They may have financial business and emotional things to take care ofchildren to be organized and settled. They can tell the family what needs to be done when they are not there. This way the family also knows and is prepared. I actually tell those who are getting more ill by spending more time and gently making them face their terminal condition. It is easier to accept coming from a doctor. Social worker Prita agrees with the doctors and says, When they have finished what needs to be done, they can go back to denial. Ultimately patients who are distracted and involved and preoccupied can feel they are really living, not waiting to die, observes the counselor.
Interpretative Synthesis of the Phenomenon of Living With Dying
A creative synthesis of the implications of the results of this study leads to the construction of the essential meanings and a portrayal of the essence of the phenomenon of living with dying for terminally ill cancer patients in hospice. Terminally ill cancer patients in physiological distress and pain have poor quality of life as they cannot achieve any sense of control or focus on other issues. Comprehensive physiological care in the supportive environment of the hospice allows patients to achieve some control, independence, and dignity within the limitations of their disease and relief from anxiety and distress.
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These patients have a broad range of physiological and psychosocial needs, susceptibilities, concerns, desires, plans, hopes, joys and suffering, which they have trouble dealing with. Palliative care reduces or manages psychosocial susceptibilities which include: being a burden to others; concerns about receiving support from families; need for dignity, respect, and hope; sustained desire to get well, to go home, or to care for their families; hoping to live without too much suffering; need for distractions and meaningful activities to engross them; and the desire to establish their identities and be known and recognized by the new community of the hospice. The vulnerability associated with their special circumstances is overwhelming, such that attention and recognition of their many needs have been observed to improve coping with emotional and interpersonal distress, mitigate the sense of purposelessness, and increase resilience, dignity, self-worth, and respect. The hospice is seen as a safe refuge where everything is taken care of and struggle subsides. Although dying is ultimately lived out in individual ways, the social needs of dying persons are often just as urgent as physical and psychological needs. With disease progress and debilitation, they may not be able to sustain interpersonal attachments with families and others and thereby become isolated. The findings that emerged in this study focused on some of the problems that constrain interpersonal communication with loved ones. Some families cannot always cope with the suffering and may withdraw; some refuse to accept that the family member is dying and are unable to give him the support he needs to cope; some patients from problem families do not inform them of their disease or refuse to meet them; some families upset the patient with their own grief and distress; often families cannot
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give compassion and care and do not become a source of comfort and support over the prolonged period of living with dying. The hospice provides patients with a whole new social circle amongst others who are in the same situation with the same problems and suffering. They are not alone in their suffering. Patients receive visits from other patients and their families; their community is enlarged and they are distracted. Living with others who are dying helps patients and their families to share feelings in warm relationships accept the reality of death. They get and give solace, support, and encouragement to each other and recover from their sad feelings, often helping those who are more frail. Emotional adjustment and quality of life improve. The teams presence prevents isolation and provides the support and encouragement to reduce fears and distresses, and by their account, the team is privileged to be a part of the life of dying patients because it is an enriching and satisfying experience in which they often receive more than they give. Terminally ill patients are living people for whom the pressures of dying often compromise quality of life and underscore the preciousness of living. Palliative care gives them control through pain and symptom management, increases vulnerability by giving attention to their needs, and sustains them through their social predicaments such that depression, despair, and anger are not so apparent in hospice patients. But patients may not be at peace and get distressed because of specific issues and reasons. Besides physiological predicaments, other observed distresses include adjusting to the cancer disease; unresolved issues and unfinished business; welfare of loved ones; transformations and disruptions in personal, social and work roles; problematic family relationships or rejection and
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abandonment; dependence on family and others; facing deaths of other patients in hospice; and contemplating their situation and life. These burdens of terminal cancer disease can compromise the period of living with dying, but it is the viewpoint of the team that patients do not want sympathy. They are peaceful and cope and adjust to their problems well. They deserve respect for that. Patients are perceived to use many coping strategies such as gaining new perspectives about an issue; sharing the problem and asking for help; denying the existence of the problem because of their helplessness to do anything about it; allowing the passage of time to help resolve the issue or change their perspective of it; appreciating that they are living comfortably, free of pain, with all their needs taken care of in a supportive environment, and within compassionate, nonjudgmental relationships. Patients subdue psychological distress and sorrow by being engrossed and distracted with company and activities and by reaching out to others to give support in their distress. They gain relief through talking about the problem and finally letting go of problems that cannot be solved. A pertinent observation is that some patients who have achieved some resolution and adjustment to their situation and distresses try to live better lives because in many ways their struggle is over, but when they are faced by overwhelming distress such as rejection by family or the fact that a spouse has taken on a new partner, the shock can devastate them and can cause deterioration and death. The experience of living with death for terminally ill cancer patients affects the team that cares for them. Detached concern, an active involvement in other activities, social support, and a rich and active spiritual life are some of the ways by which the team members cope and can effectively do their compassionate work.
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Terminally ill patients are affected by the suffering and death of patients they have befriended in the hospice, as it is a constant reminder of their mortality besides being a source of grief. No coping strategies became apparent and they have to live with it although the team is sensitive to this distress and allow each other to share thoughts and feelings. Team members also have to cope with the death of patients they have come to know. There is solace that the patients were cared for, valued, accepted, and protected from pain. They know that they were not alone in their suffering and that the period of living until death had been comfortable, peaceful, and joyful. Moreover, it is the experience of the sister nurses that patients are prepared and ready when death comes. Team members express relief in this because they said that a prolonged life with intolerable suffering has no meaning, and death is a release. They are grateful that patients are not allowed to suffer in the process of dying. An important aspect of living with dying for patients is discovering purpose and meaning in every day that they are alive and making each day count. In the context of the supportive hospice facility, patients gain courage to live better lives because everything is taken care of and the struggle has ended. The control of pain and attention to needs improves adjustment and makes life worth living. Frustration accompanies the limitations of what is possible in their lives and this helplessness leads to resignation and giving up for a time. This has been observed to change when patients renew their involvement in the dayto-day life around them, when they give and receive concern, support and care and understand that although life cannot be the same and many issues cannot be resolved, they are not alone. It is the viewpoint of the team that patients are peaceful and live day-to-day as an integral part of the hospice community, establishing their identities and sharing their lives.
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Acknowledgment of their courage and endurance as well as resilience was seen to improve patients self-worth and restore their dignity. They are valued and their individual experience is respected. When patients feel better, they hope for many things such as recovering, doing things for themselves, and going home. They hope that they will once again cook and care for the family, that they will die without suffering, that loved ones will manage, and that they may get one more chance. In the living with dying period, most ask for prayers and patients are challenged to focus on the spiritual issues that concern them. From the teams viewpoint the hospice environment is a place that ensures quality of life and patients feel they are really living, not waiting to die. This study found that hospice patients would rather live in hope and not focus on their imminent death. A few who are keenly aware of the fact that they are dying cannot accept or cope with it and become frustrated and angry and are very difficult to deal with. It is only with great effort that these patients renew their commitment to life by engaging with the environment and people around them. From the hospice teams perspective, it is clear that living while facing death, the horse on the dining table, is difficult. It is evident in the findings that patients do not want to know that they are dying. Terminally ill cancer patients need time to adjust. Death is not thought of or talked about day-to-day, but when a patient dies in hospice or others are suffering, they mention their mortality and hope that when they die there will be no suffering or pain. In their heart of hearts, they know of their imminent death, that their disease is aggressive and advanced. In the process of coming to terms with it, they put this knowledge into some perspective. Patients are frightened of death when they are not ready, but when ready, fear is replaced by acceptance. They give their accounts, sort out their tensions, and when their work is finished they die quite soon.
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CHAPTER IV
DISCUSSION
This qualitative study constructed the essence of the phenomenon of living with dying for terminally ill cancer patients in an inpatient hospice facility through the meaning constructions, experiences, and perspectives of the multidisciplinary team. The results were presented as a developmental exposition of the Quality of Life Themes of living with dying in hospice. The findings of this study underline the conception that an individual with a life threatening illness or one who is in the process of dying is, above all else, a person, a living human being. There may be much that is distinctive or special about individuals with terminal illness who are dying because the pressures of dying often underscore the preciousness of living (Corr et al., 1997). However, like all living persons these individuals have a broad range of needs and desires, plans and projects, hopes, joys and sufferings, fears and anxieties. In fact, each person who is dying is a complex and unique entity with interacting physical, psychological, social, and spiritual dimensions (Saunders, Baines, & Dunlop, 1995). The research also reveals that psychological difficulties, social discomfort and spiritual suffering may be just as powerful, pressing, and significant as physical distress. One part of living with dying is coming to terms with what can and cannot be changed, such as the fact that dying is inevitable, and suffering and losses of many kinds cannot be avoided. The other part of living with dying is more spiritual and involves hope,
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understanding purpose and meaning in how life was lived, and facing death. For these patients, comprehensive, palliative care from a multidisciplinary team in an inpatient hospice facility makes the difference between another good day of living and another terrible day of dying (Saunders, 1976). Palliative care ensures pain and symptoms control in the acute-crisis phase which helps patients regain some degree of control. Emotional and social support in compassionate and trusting relationships ensures that their needs are met. This reduces vulnerability and increases their potential to cope with psychosocial demands and distresses with resilience in the chronic living-dying phase. Findings further disclose that depression, anger, and despair are not evident and that existential distress is not apparent. Psychological distresses surface because of specific reasons and issues, which patients tackle with emotional and practical support from the hospice and team. Emotional adjustment comes from being recognized, valued, respected, understood, and cared for. It also arises from integration into the hospice community and from being supported by others who have the same suffering and grief. Purpose and meaning in their lives is achieved through integration into the social community, the therapeutic sharing of their lives and dilemmas, and hope. In hospice, recognition for their courage and endurance makes them feel valued and also enriches the lives of the team. Most live happily and peacefully, free of pain and symptoms, in the comfort of the hospice. It is a place of peace, a safe refuge, a social place where their needs are addressed. Meaningful activities and distractions are seen as imperative in this period. Though awareness of death underlies this whole period it is realistically and fearlessly faced in the last stages, as death draws closer in the terminal phase of living.
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The discussion will consider the findings in the light of the results, focusing on the Quality of Life Themes which integrate the research questions in a developmental framework: Limitations and Control, Vulnerability and Resilience, Individuality and Community, Managing Psychosocial Distresses, Making Each Day Count, and Acknowledging the Horse on the Dining Table.
Quality of Life Themes
Limitations and Control Careys (1974) Living Until Death Program in a general hospital utilized a quantitative approach to identify factors relating to emotional adjustment for terminally ill patients. Results of the present study show that one of the most difficult times for cancer patients is when curative therapies no longer benefit, when goals of treatment become palliative and supportive (Andersen, 1992; Miller, 1994), and when the acute-crisis phase of living with dying sets in. Patients are lost, disturbed, unhappy, depressed, and in fear for their lives. Anxiety, fear, tension and worry can be seen in their faces for the first few days. They say they will die if they come to the hospice and initially refuse to enter. They have been sent from hospitals usually in intolerable pain, with fungating wounds, bedsores and smell. They often have not slept or eaten for days or eliminated their bowels. They are suffering and are in shock. Careys (1974) findings in the hospital context are consistent with the goals of palliative care in the hospice of ensuring that dying patients maintain whatever control is possible during their final days of life, and control of pain and symptoms is the initial focus of care to reduce suffering. Levels of physical discomfort are negatively related to
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emotional adjustment (Carey, 1974), and when in pain, patients cannot think of anything else. Patients are in urgent need of in house treatment for physiological distress. The findings of this study confirm that in this devastating situation, effective comprehensive care in the initial days improves the quality of dying patients lives. Physiological distresses can be controlled or diminished in nearly every case in the hospice (Doyle, Hanks, & MacDonald, 1993; Saunders, Bains, & Dunlop, 1995; Twycross, 1995), and other physiological symptoms, which can be more distressing than pain, (Saunders & Sykes, 1993) are effectively ameliorated in most cases (Corr, Nabe & Cor, 1997; Kemp, 1995). With improvement of appetite and sleep, the body is calmed. Adjustment to living in the hospice. Transition to hospice care causes negative affect (Smith, 1985), and patients are perceived to display peak anxiety. Adjustment to living in the hospice, rather than at home, comes with patients understanding that they need help and are receiving it free of cost and without complaint. The degenerative aspects of the disease and need for strong narcotics (Saunders, 1993) initially necessitate admission to the hospice. However, most patients choose to stay, many want to go home but come back because they cant adjust as family may not bother, and care giving is not the same. Patients concerns about separation from loved ones, and how they would care for themselves, affect emotional adjustment (Carey, 1974) as is evident in this study and observed by at least eight participants. However with emotional support and counseling many patients have been able adjust to or resolve worries about the welfare of dependents. Education is positively related to emotional adjustment (Carey, 1974) especially when patients first arrive at the hospice because some poor patients do not understand their disease, where they are and what is happening. However, once the pain and symptoms are
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controlled, they are better adjusted than the educated whose knowledge of the disease and its progress frightens them. Even though they are very unwell, they say they have never seen such comfort and love and care. The hospice is heaven for the poor. A general consensus was not reached on educational levels and adjustment, even with follow-up interviews. Only 4 of the 12 participants commented on this. The sister nuns do not see a difference in adjustment between the poor and the educated, and the doctor mentions only that the poor do not display coping problems and seem to maintain their composure. In this research it was evident that dignity comes from independence and control (Smith, 1985). Hospice patients can maintain their dignity as family does not have to do anything for them, and they are not a burden on their families (Carey, 1974; Saunders, 1993). Patients have found joy, caring, and love with emotional support and dont want to go home as they feel protected, comfortable, and less frightened. Vulnerability and Resilience In hospice, patients have a broad range of needs, anxieties, concerns, fears, hopes, joys, sufferings as well as physiological, psychological, and social distresses which underlie the living with dying period. They are accepted with their wounds, deformities, and odor; caring relationships with the hospice team give them the compassion, love, care, and emotional support they need (Linn et al., 1982, and others). The team draws them out into conversations to lighten their load, keep their spirits up, and share their needs, concerns, and problems in compassionate, supportive, caring, and non-judgmental relationships in palliative care. These factors are crucial as Blooms (1987) findings confirm in understanding patients multiple needs because of cancer disease.
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Patients are given attention and recognition of their distresses and needs, and this enhances their resilience and quality of life. Individuality and Community It is apparent from the results of this study that social needs for communication and relationships are as urgent as physiological and psychological needs (Corr et al., 1997). The support of the hospice community gives patients a whole new social circle. In this shelter, they find safety, purpose, and meaning and feel better about living (Corr et al., 1997). This research substantiated other researchers finding on social support from families. Patients cannot cope, they are hurt and devastated and share their loneliness, grief, and isolation, when families do not visit (Carey, 1974). The hospice team supports the patients and their families (Corr et al., 1997; Kbler-Ross, 1986) and encourages them to relate normally when they withdraw because they cannot cope (Kbler-Ross, 1986). Fear and aversion to cancer or beliefs that they should maintain a faade of cheerfulness and optimism (Wortman & Denkel-Schetter, 1979) are also dealt with, as are misconceptions about cancer. Some patients from problematic families become distressed if their family visits or do not allow some family members to care for them or visit, e.g., daughters-in-law, as support from the wrong person exacerbates their distress (Cohen et al., 1983; Heller, 1979; Schaefer et al., 1989; Suls, 1982; & Wortman, 1984). Feelings of concern from family, children, and close friends as well as a warm and supporting relationship with ones spouse positively affected patients quality of life (Carey, 1974). This is borne out by the fact that patients who were left in the hospice and never visited by families became hurt and devastated, isolated and purposeless. Cancer affects the whole family; some cannot cope with patients suffering, mood swings, and needs, and
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withdraw; others do not have the courage to visit. Refusal to accept the patients terminal condition and let him talk about it, problematic families, and families who are more upset than the patient are all factors that cause isolation, and compromise relationships and communication. These factors have been observed in this study to increase distress as patients have enhanced needs for social support (Bloom, 1982; Carey, 1974; Imaru, 1975). This study illuminates how interpersonal interactions with family are also affected by the context in which they take place (Glasser & Strauss, 1965). In the hospice, families have been told that the patient is dying, but they may not tell the patient (closed awareness) leading to unauthentic and difficult communication as patients express suspicion that something is wrong. Some patients, because of their physical deterioration, may be aware, but do not talk about it, leading to mutual pretence. Open awareness contexts are apparent in the terminal phase, although some family members still refuse to accept and remain in denial. Patients adjustments and coping is influenced by the hospice context because they feel less isolated as they are not alone in their suffering and have the same problems (Yalom, 1995). This encourages them to take things in their stride and reduces fear and distress. They come out of their sad feelings quite fast because they get and give support and solace and encouragement to each other. Being together and sharing their lives and achievements and common concerns, interests, and frustrations give them purpose and meaning as they live day-to-day amongst others and are distracted from their own pain and suffering. Patients families also benefit from this contact because they gain support and courage to recognize death and accept it.
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The support from counselors and caregivers as being beneficial and improving adjustment and quality of life (Adler, 1972; Kbler-Ross, 1986) is substantiated in the present research. The palliative care and social support from the team fulfill patients needs (Zerwekh, 1994) for social ties and attachments, to be valued, recognized, for dignity, selfworth, and respect, as well as his needs for hope, compassion, love and care, and for choices and control over their lives (Corr et al., 1997). All caregivers form relationships with patients. Kbler-Ross (1986) emphasized that an authentic, one-to-one relationship is beneficial and therapeutic even though it can be difficult to cope with patients distresses. Eleven participants describe their relationships with patients: I treat them like mother and father and care for them and they give me love; I can see Him in every patient and welcome God and thank him; I have compassionate and caring relationships with thema safe contact without expectations and judgments; relationships and attachments form with hospice patients, not personal but different from the relationships with patients in hospital; we become close in their pain and suffering without introduction; I try not to form deep attachments as it would affect my family life, but they get to know me and need me as much as I need them; a relationship based on getting to know each other does form over time; I have more love for them than my own family. I am really attached to these patients who give so much love. I enjoy meeting them and giving a massage, doing their hair. We talk, hold hands and cry and laugh together; and It helps a lot to be in a real, personal relationship with the patients. This is the only way to know them and understand their problems and help them.
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Managing Psychological Distresses According to the literature, occurrence of cancer and its relentless progress is a major stressful event that exacts continual adjustments and compromises quality of life (Andersen, 1992; Corr, Nabe, & Core, 1997; Doka, 1993; Hinton, 1973; Kbler-Ross, 1986; Linn, Linn, & Harris, 1982; Saunders et al., 1995; Schonwetter, 1995; Spiegel & Lasar, 1997; Taylor, Falke, Shopaw, & Lichtman, 1986; Telch & Telch, 1986; Walsh, 1994; Weisman & Worden, 1977), and the present research concurs with these findings. Effective pain and symptom control, social and emotional support, and compassionate care for cancer patients (McCorkle et al., 1989; Spiegel & Bloom, 1983) in hospice has been observed to ameliorate psychosocial distress (Derogatis, 1986). Most of them seem to cope and adjust to their problems very well and come out of sad feelings. In this study, it became apparent that there is always a reason for their distresses--concern for family and children, fed up with illness, or sad because they are going to die, or physical distress--and once they talk it out they gain relief. The exception is the extreme circumstance when something goes wrong to disrupt the better lives they try to lead and this has been perceived to be so psychologically distressing as to cause death. In light of this, the magnitude of distress in this devastating situation (Bloom, 1987; Thompson, Anderson, & Petrillo, 1992), although present, has not been found to be overwhelming, and they are peaceful. Comprehensive palliative care may account for this because the cited studies were not done with hospice patients. It is important to mention that the hospice is sent the worst cases with multiple distresses, fungating wounds, and in sometimes intolerable pain.
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Ninety-eight percent are not depressed, and depression in palliative care is not so apparent. Anger and despair are not significantly apparent either, and the patients are peaceful which contradicts Walshs (1994) evaluation of patients applying for hospice care as well as Achute and Vauhkonens (1970) assertions based on interviews with cancer patients. The mitigating factor is that the patients in this study receive comprehensive palliative and compassionate care and support. Psychologically, the team contributes to patients needs for dignity, care, and respect; and they live better quality of lives and are not always distressed. They are not dependent on family for help and cope with disruptions in their lives adequately in this environment. Thus, in palliative care, psychological distress does not play an augmenting role in increasing the experience of pain (Foley, 1986; Jay, 1986). The present research results correspond with Zerwekhs (1994) and Saunders (1990) models for care giving in hospice. Patients must live through their distress and emotions, and caregivers cry with them, hug them, distract them, humor them, and let them express themselves (Hall, 1966). Some react or behave inappropriately with caregivers, and families to express jealousy and frustration at their apparent health and pain-free lives or to hide their helplessness, but these are short lived (Kbler-Ross, 1986; Saunders, 1990). Some patients talk of death and become distressed, especially when there is a death in the hospice. Caregivers allow them to ventilate their feelings. Some team members tell them they have to live with it so it is better to come to terms, it is Gods will, everyone has to die; or they cheer them up by telling them they will get better; others talk of their own lives and the uncertainty and fear they face and encourage them to live day-today. Zuehlke (1975) emphasizes that facing death with them honestly, grieving and allowing
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them to share their feelings, and empathizing, rather than pitying (Garfield, 1976) and trying to make them feel better, is the more effective stance for quality of life (Nichols, 1995; Zerwekh, 1994). Patients know they are dying and these platitudes do not help. They have to put death into perspective and understand and accept, notes the researcher/counselor. In fact most literature on death and dying confirms that caregivers do not need to think of the right thing to say. Stedeford (1979) stresses that sensitivity and willingness to follow the patient rather than lead him, knowledge of the psychology of dying, and ability to accept death should be important variables for caregivers. Data confirms that patients dont talk of death all the time, or think about it because they are peaceful, have gotten used to it, cope philosophically, spiritually surrendering their lives to God, or through denial, hope and submission that it is in Gods hands. Caregivers do not broach the subject unless the patient initiates it, preferring instead to distract them and enhance their living day-to-day. Counseling. The findings suggest that counseling terminally ill patients, as substantiated by past research (Linn, Linn, & Harris, 1982; McCorkle et al., 1989; Spiegel & Bloom, 1983), can be demanding, especially in terms of being comfortable with difficult topics and bedside counseling. It has been noted that distress and social disruptions cause adjustment difficulties. The counselor and caregivers who listen to patients can become exhausted and distressed in managing appointments and time for sessions. Detached concern (Corr, Nabe, & Corr, 1997) rather than becoming immersed in patients suffering is a useful stance. Additionally, counselor effects of empathy, warmth, and genuineness, (Parloff, Waskow, & Wolfe, 1978) which are pivotal for cancer patients confronting life and death issues can be affected with distress.
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The research illuminates Byocks (2000) contention that supportive therapy alleviates distress and improves coping when it is nonconfrontational and empathic (Faller, 1993), although the counselor observed that confrontation proved advantageous with some patients and personality factors must be considered. The subject of the instrumental case study (Appendix E) gained benefits when he was challenged to look at purpose and meaning in his life. Patients are grateful that they are taken seriously. Andersens (1992) findings demonstrate that maladaptive coping can be contained with counseling and can improve health behaviors such as improved diet, exercise, and social adjustment. Patient Ss change in attitude (Appendix E) was a result of facing his problems and concerns and putting them into new perspectives and then focusing on himself. He recognized that he has lived life and knew what he would do if he recovered; he realized that there was no reason for distress in this place where everything is taken care of. We should be happy and eat well and be thankful. This is what he did. This example also illustrates the findings of Gordon (et al., 1980) and Linn (et al., 1982). Improvements with counseling have been notable considering the worsening pain of patients as they approach death (Linn et al., 1982). Life satisfaction, self-concept, and selfesteem for the patients in supportive therapy or counseling have been noted in this study. Butlers (1974) observations about life reviews are confirmed in this study. Patients tell us about their lives, who they were and what they did, and this helps us to understand them and give attention and recognition to them. By sharing their stories they gain new perspectives about the purpose and meaning of their lives.
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Coping with distress of caring for the dyingthe hospice team. The results have clarified Grollmans (1995) insight that caregivers and family are also challenged with coping with dying. An important finding in the present research is that those who work full time in palliative care do suffer emotional distress. Constantly dealing with dying persons is stressful and disturbing at times. Most of the team, besides the sister nuns and the nurses aides, do not live on the premises and spend short periods of time in the hospice. They can organize schedules, time spent in the hospice, and the patients they see. This choice is not often available to the palliative care staff who have to be constantly vigilant. However, care is taken to involve nurses aides in activities not related to patient care and to ensure that they have social and emotional support. The sister nurses who administer the hospice also organize schedules and time off to ameliorate stress. Rich and varied interests, strong support from family and friends, religious and spiritual support, and detached care and concern are other ways of coping. The team members attitudes about death (Walsh, 1994) play an important part in how they cope and adjust to caring for the dying. Most participants cope well with deaths in the hospice and do not get distressed enough to stop doing this work. Caregivers self-care and burnout. The task-based approaches to coping with dying are based on the premise that family friends, volunteer and professional caregivers who care for the dying also cope with living with dying (Grollman, 1995). The different dimensions of care required by patients who are dying can exact an emotional toll on caregivers. One caregiver says, this work makes me aware that I can also get cancer. Although the hospice team are upset, sad, feel like their mother or father has died, most also realize that it is an end to prolonged suffering and feel grateful and satisfied that these patients have
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been well cared for till the end. This and the patients blessings, love, and care act as motivating factors. Caregivers talk to each other about their own mortality and become accustomed to it (Corr et al., 1997; Rosen, 1990). Patients coping with distress. Patients have the choice to address, respond to, and manage demands; and when they are vulnerable, they can minimize, accept, or avoid stressful demands (Lazarus & Folkman, 1984; Monat & Lazarus, 1991). Those who only have pain cope best when it is controlled compared to those with distressing symptoms and wounds. Others with unresolved issues and concerns share their problems and cope better because there is always someone who will listen and whenever possible give the practical assistance to deal with the problem. In the hospice, patients day-to-day life is comfortable and peaceful; there is no more struggle, everything is taken care of, in this clean place with wonderful people in it; and patients have some control and resilience to address the demands at hand. When problems are particularly stressful and cannot be solved, patients let them go and move on or minimize their impact by reframing them (see Appendix E). Patients respond to adaptive coping tasks in individual ways (Moos & Schaefe, 1986) and most understand the meaning and personal significance of the situation and respond to the demands with emotional support. Hospice gives all attention and care. They feel cared for and respected. We will not let them suffer. I am amazed at the way they come out of their sad feelings. Most cope pretty nicely, adequately, in the safety and security of the hospice; and for those who cannot handle the problems (Carey, 1974; KblerRoss, 1975), the team minimize distress through social support and listening to understand patients attitudes and needs (Corr et al., 1997; Saunders, 1990).
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Dokas (1993) Tasks for Living With Life Threatening Illness is based on Pattisons (1977) model of The Experience of Dying. The present research has formulated its own developmental model drawing from the significant features of these important frameworks in order to depict and elucidate the essence of the phenomenon while incorporating the Quality of Life Themes gleaned from the data. In the Developmental Model of the Phenomenon of Living With Dying for Hospice Patients, the elements of Pattisons (1977) model to explain the process from diagnosis to death are retained but expanded. The phases in the current model illuminate the temporal elements of the period of living until death in a hospice from the acute crisis phase to the terminal phase. The acute crisis phase represents the transition from curative to palliative and hospice care; the chronic living-dying phase spans the challenges of psychological distress and the challenge to really live, not wait to die; the terminal phase involves confronting death. Moreover, unlike the present studys model, Doka (1993) views the terminal phase as the living until death period when patients tasks relate to challenges arising from disease and treatments and decision to minimize discomforting symptoms. Issues associated with social relationship, and concerns about psychosocial and spiritual integrity are also considered here. Subsequently, the tasks outlined in this phase of Dokas (1993) model (see Table 1, last column) are substantiated by this research. Making Each Day Count Schnwetters (1995) and Saunders (1990) assertions on the need for the diverse skills of a multidisciplinary team in hospice for effective treatment of physical, emotional, social, and spiritual needs are confirmed as is Smiths (1985) emphasis on the importance of quality of life and autonomy for the dying person. The results of this study clearly indicate
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the different factors of pain control, dignity, respect, emotional, social support, and compassionate care that make the patients feels valued. The hospice team accept a trusting relationship with patients and work together to develop a plan for a comprehensive casemanagement approach to care with the endpoint of enhancing quality of life (Saunders, 1990; Schnwetter, 1995). In evaluating his study, Carey (1974) concluded that the patient must find satisfactory meaning in his new life situation, in the pain, helplessness, changing relationships, separation, and losses. If the patient can find that his life still has value then he has acquired emotional adjustment whether he is in a state of acceptance of denial. Carey (1974) reiterated that the patient can be helped to see that there can be meaning and value simply in how he copes with suffering and living until death and these facts are confirmed by this study. Spiritual aspects of care. This study affirms Smiths (1985) contention that patients may seek consolation in rites and rituals. Many ask us to pray; she became obsessively prayerful; and some would repeatedly talk about God and praise him. The findings confirm that participants affirm and value (Boerstler et al., 1995; Zlatin, 1995) patients for their courage and endurance and how this enriches the lives of the caregivers as well (Carey, 1974). As they reflect on spiritual issues they are allowed to meditate as caregivers empathize with them. Dokas (1993) spiritual tasks for those who are dying were elicited in the data of the present study. Most, if not all patients, want to talk about themselves, who they are and what they did. Besides establishing their identities for the new community (Doka, 1993), their life review or narratives also give them a perspective of the meanings of their lives by
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sharing it with others. One patient wrote his story, another asked for it to be written for him, but most may just talk, till the story they have constructed has been heard (Corr et al., 1994). An elderly gentleman spent his last day going through his whole life. Intricate details were mentioned in between periods of semiconsciousness and there was no emotion. Hope is another spiritual task that is always present. Those who dont know they are dying hope to get well, especially when pain and symptoms are controlled, and others hope for one last chance to do the things they want to. Hospice care gives them hope for quality of life till death. Gordons (et al., 1980) program for terminally ill focused on day-to-day difficulties that cancer patients have to confront. In this study the findings confirm that hospice patients are assisted to live with the disease effectively through pain and symptom control. Moreover, social, emotional, and counseling support from the team encourages ventilation of feelings; gives reassurance and verbal support; helps patients to clarify their own feelings and interpret their thoughts, feelings and behavior. Their past and current situations are explored and support is offered by being present and listening to them and chatting with them about other things. Patients are described as being peaceful and happy and do not display anger, anxiety, or depression. They are encouraged by this support to be more active and involved in day-to-day life. Social worker Sita emphasizes that when she is reading to them, patients who are in pain stop complaining and experience relief (Gordon et al., 1980). Acknowledging the Horse on the Dining Table Careys (1974) findings that the ability to talk frankly about ones terminal condition is conducive to emotional adjustment did not become clear in this study. Whereas Western literature stresses truth telling, suggesting that it is better that the patient knows he is dying
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and is informed personally by his doctor for him to be able to resolve issues and take care of business; in India, the approach is less direct. Patients in India are usually not told frankly about their terminal condition either by doctors or their families, and although the palliative care doctors do inform patients over time because of the need to prepare and deal with financial and emotional issues, they can see that many are not ready to confront it or are frightened. There is a consensus that they do understand internally and are in the process of preparing, but denial and hope are important as well to maintain emotional adjustment and relationships with others (Carey, 1974) rather than talking of the terminal condition. As mentioned above, when patients do talk, they may be given platitudes by some of the caregivers, and this may not promote adjustment to dying. Living with others who are dying in the hospice where most patients are peaceful increases patients ability to cope with terminal illness (Carey, 1974). They share the same grief, the same suffering, and the same problems and are not alone in their suffering, and this helps them come to terms and accept. They relate to each other individually or in the womens group and help to make others enjoy as long as there is life and give solace, support, and encouragement to live day-to-day. Griffin and Rabkins (1998) research with AIDS patients is pertinent in the context of cancer as well. Their findings indicate that perceptions of control over illness were associated with less depressive symptoms, less anxiety about death, more hope and better psychological adjustment. Whereas realistic acceptance was associated with more comprehensive planning about death, it was also associated with greater hopelessness. They
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found that acceptance of death at advanced stages of progressive disease is more psychologically adaptive. These findings can be substantiated in the present study by the data. In hospice, anger, despair, and depression are not notably apparent. It has been noted, those who do not know they are dying are not depressed. This could imply that patients may have perceptions of control in the form of hope and denial or lack of knowledge. Most accept toward the end, in the last stages, not earlier, and they are prepared. Slowly as they get worse, not better, weaker and unable to walk, bedridden and frail, they accept and then give account of their tensions, finish whatever has to be done and die shortly after. They are frightened of death when not ready. When ready they become happy and accept. Additionally, the importance of hope is substantiated in this research. We give hope to them, not for cure or prolongation of life, but for quality of life till death. In evaluating his study, Carey (1974) concluded that the main challenges facing a terminal patient were, firstly, his choice of accepting or rejecting the reality of dying. Denial would involve the attitude that he is going to get better in spite of all information to the contrary, and the desire to recover may be present even with acceptance. Secondly, the patient must find satisfactory meaning in his new life situation, in the pain, helplessness, changing relationships, separation, and losses. If the patient can find that his life still has value, then he has acquired emotional adjustment whether he is in a state of acceptance or denial. Carey (1974) reiterates that the patient can be helped to see that there can be meaning and value simply in his courage and endurance in coping with suffering and living until death, and this was evident in the present research. Seven of the participants expressed that they were enriched and admired the cheerfulness, gratitude, courage and endurance, joy and peacefulness, and caring,
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blessings, and love of the patients. They rarely complain; they value everything and are thankful. This very important issue of accepting death realistically or staying in ignorance or denial by not addressing the issue immediately is imperative and needs to be investigated further because it looks at facing death from the perspectives of individuals psychological adjustments and quality of life. Data from the present research suggest that patients are deeply affected by death in the hospice. This contradicts Yaloms (1995) assertions to the contrary. They do get disheartened. My heart is small. I am frightened. It is depressing to see that someone they know is dying, and they are sad as if a family member has died, they have to constantly face their own mortality. No coping strategies became apparent and the experience can be demoralizing, although patients talk about the death with team members and each other and gain support. They have to live with this distress. The hospice protects them from the actual process of dying by shifting patients in this stage to a private room. Carey (1974) elucidates that being close to a person who was angry and upset about dying is negatively related to adjustment. Being close to a person who accepted death with inner peace as well as frankly discussing death with another dying person are both positively related with ability to cope with terminal illness. These results could not be confirmed or disconfirmed by those of the present study because patients were not interviewed. However, it is worth further investigation as this could be a mitigating factor to patients adjustment to deaths in the hospice and their own mortality.
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Other Findings An important finding of this study is that not everyone can do this work, and many young doctors, novices, nurses, and volunteers cannot cope with the challenges and need more moral support than the patients, informs Sr. Hope. All the participants have been at the hospice for over 3 years. The reasons for their continued involvement include a sense of purpose and meaning because the care makes the difference between another good day of living and another bad day of dying. They acknowledge that the job is necessary, especially when they see the perceptible improvements in physical and psychosocial distress that result. Many of them have a profound interest in helping others and possess a need to do this kind of purposeful, compassionate work. The caring response from patients and a realization that patients need to be distracted also motivate them to persist in their work. The sister nurses are part of an order who care for patients in hospital and hospice. They feel privileged to do this work although one of them found it depressing and uncomfortable initially and wanted to leave. In due course, she found that the patients are so grateful for the little they do, and that helped her to love this work. The nurses aides are young, emotional, and strong. They feel that their job is necessary and that they make a difference in the lives of dying patients. Patients show care and concern for them and this attachment helps them because they feel needed. To sum up, complex interactions exist between the physical, psychological, and social sources of distress and the physical and psychosocial disabilities that accompany terminal illness. These escalate as cancer disease progresses and can severely compromise quality of life (Walsh, 1994). The findings of this study substantiate these interactions and ways in which palliative care addresses them:
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1. Social isolation and loneliness adversely affect psychological well-being and emotional adjustment and aggravate physiological distress (Carey (1974). Social ties and relationships are emotionally satisfying aspects of life that are observed to mute the effects of stress and help people cope with the exigencies of chronic disease. 2. Physical and psychological distress diminishes the ability to communicate, causes withdrawal from family and friends (Carey, 1974), and reduces emotional adjustment. It is the teams perspective that palliative care and emotional support from caregivers facilitate physical and psychological adjustment to cancer, and this is substantiated by Weidman-Gibbs and Achterberg-Lawlis (1978) in their studies of patients with advanced disease. 3. The transition from curative therapies to supportive care has negative psychosocial effects on the lives of cancer patients and can be enduring (Maquire et al., 1978; Meyerowitz, 1983; Morris et al., 1977; Telch & Telch, 1986). Palliative care in hospice focuses on these issues to help patients adjust by providing comprehensive care. 4. There is a correlation between the magnitude of disease and psychosocial distress (Andersen, 1992). The diseases of cancer physiologically debilitate patients and in the advanced stages results in the loss of work role, dependency, fears, and distresses; and transformations in social relationships (Hinton, 1973) can affect social status. Cancer is a major ongoing stressor that exacts continual emotional and psychological adjustments even in the best of cases. The enhanced needs for social and emotional support are met in hospice to help patients deal with fears and ambiguities (Bloom, 1982).
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5. Psychological symptoms of reduced interest in life, frustration, depression, and fear of death are common reactions to the physiological reality of cancer and causes withdrawal. In this study, these reactions are observed but are mitigated by comprehensive support in the hospice environment and it is the viewpoint of the team that these symptoms are effectively reduced or alleviated with attention and recognition of patients needs, concerns, and stresses. These quality of life issues are at the heart of this study and illuminate the essence of the phenomenon of living with dying for terminally ill cancer patients in an inpatient hospice facility.
Implications of the Research
The most important implication of this study is the need in psycho-oncology for continuing efforts to assure that patient-centered care incorporating quality of life through multidisciplinary efforts is available. Even as the thrust towards prevention of cancer has accelerated, large numbers of people are diagnosed and must cope with severe disease, treatment, psychological and social disruptions, and the reality of a shortened life span. In life, facing the reality of death is not difficult because it is not imminent, but for the terminally ill it can be devastating. The present research reveals that patients would rather maintain control, adjustment, and hope than accept death, so that they can really live and not merely wait to die. Facing the challenge of death is undertaken in the last stages of life without fear and with acceptance. Patients know they are dying and do not talk about it, but are in the process of being prepared to come to terms with it. These finding have important practical implications. Is it really desirable to talk about death, to realistically
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face it together, so that the terminally ill can cope more effectively and plan for death and in the face of death (Corr et al., 1997)? It may be more psychologically adaptive for most to realistically accept death at the advanced stages of progressive disease. This study and the literature reveal that in the chronic living-dying phase, meaningful activities and distractions become imperative and a hospice environment that is conducive to fostering creativity, meaningful activities, and a more home-like atmosphere is necessary. The inpatient hospice facility may address these findings and make the move towards caring for these needs more comprehensively. Awareness of the difficult transition from curative treatment to palliative and supportive care for patients with cancer and other life threatening diseases can be developed. Those who are dying are living human beings for whom the pressures of dying underscore the preciousness of living. They need comprehensive care to cope with the challenges of this phase of their lives. The results have clarified Grollmans (1995) reports that caregivers and family are also challenged with to cope with dying. An important finding in the present research is that those who work full time in palliative care can suffer emotional distress because of the inherent stresses of terminal illness. This has practical implications. Hospices may find that organizing optimal work schedules for their team would prevent burnout. Workshops and support groups could be initiated to provide emotional and social support to caregivers and a platform for sharing their doubts, questions, and distress in caring for their loved ones. Understanding the complex interactions that exist among the physical, psychological, and social sources of distress; the physical and psychological disabilities that accompany terminal illness; and their influence on quality of life (Walsh, 1994) would ensure quality of
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living for patients at home, hospital, or hospice. Research or programs for the terminally ill in hospice must focus on specific quality of life issues in all dimensions of care as they relate to emotional adjustment. An important finding in the present research suggests that patients are deeply affected by death in the hospice. Follow-up research with patients themselves would promote a better understanding of their needs at this time. Yaloms (1995) and Careys (1974) findings do not support this. Terminal illness, with advanced progressing cancer disease, is not just a biomedical problem, and hospitals and other health institutions must be encouraged to follow a treatment of care for those patients who continue to live in hospitals after treatment has been concluded. The development of psycho-oncology divisions in hospitals in India would be an important move in this direction The findings can be used to develop a comprehensive program of psychological and physical care for patients in the last stages of terminal illness either in the home or in hospice, with the aim of empowering the dying patient and making him the center of energy in his changing world. When the pain and symptoms are controlled in hospice care, and psychological and emotional distress are ameliorated, improved communication with significant others can be enhanced. This proves necessary for emotional adjustment and quality of life so that he can be an active participant rather than a passive victim of his circumstances. These findings can help build awareness in India and elsewhere of the need for inpatient hospice facilities for the comprehensive care patients with cancer, AIDS, and other terminal diseases, as well as for the aged.
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Griffin and Rabkins (1998) research with AIDS patients is also pertinent in the context of cancer. Their findings indicate that perceptions of control over illness were associated with less depressive symptoms, less anxiety about death, and better psychological adjustment; and that realistic acceptance, while associated with more comprehensive planning about death, was associated with greater hopelessness. Acceptance at advanced stages of progressive disease is more psychologically adaptive. This very important issue in the living with dying of terminally ill cancer patients needs to be investigated further because it looks at facing death from the perspectives of individuals psychological adjustments and quality of life.
Limitations of the Research
In the dual expertise, cancer and psychology, there are scientific, ethical, and logistic difficulties surrounding research with ill, symptomatic individuals (Bergin & Garfield, 1994). Limitations are inherent in collecting data. The researcher very much wanted to use the narratives or life stories written by terminally ill cancer patients to gain an insight into the essential experience of living with dying and to give the patients a voice. However, the investigation would have perforce involved informing patients that they were dying and emphasizing their terminal condition. Additionally, the researcher considered it unethical and inappropriate to document patients experiences through survey questionnaires, personality inventories and other instruments of subject report. These limitations of the research, although self enforced, do not in any way undermine the valuable data, insights, and observations of the hospice team and their rich and varied examples of the experiences of the phenomenon of living with dying seen in patients under their care.
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Given constructivist acknowledgments that there is no one truth or reality and that all knowledge is constructed, the aim and even the possibility of replication of this study is thrown out (Altheide & Johnson, 1994). The emergent design of naturalistic inquiry is dependent on a specific context and interactive dynamics, necessarily lowering the possibility and desirability of a focus on external validity (Lincoln & Guba, 1985; 1999). The qualitative researcher can only set out working hypotheses together with a description of the time and context in which they were found to hold. In order to enable others wanting to apply the findings of this study to their own research, to make an informed decision about whether to do so, thick data of the phenomenon of living with dying as experienced by the participants as well as the researchers participant observations can be provided. The subjective influence of the researcher has been dealt with elsewhere as it affects interviewing. However, it exists in the analysis phases. Qualitative research involves a systematic, comprehensive, and definitive exposition that responds to the whole phenomenon and utilizes appropriate methods. In this research, peers critiqued the analysis, and debriefing sessions were regularly held with a counselor. Ethical issues surround working with terminally ill cancer patients and recording their interviews. Although the researchers journal is rich with patients descriptions of the complexities of living with dying, as are the team members interviews, directly interviewing patients would be beneficial in understanding the phenomenon of living with dying from their own perspectives. This can be made possible through prolonged interactions with patients because these living human beings would like to be valued for what they can offer.
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CHAPTER V
SUMMARY AND CONCLUSIONS
This qualitative, heuristic study sought to discover the essence of the phenomenon of living with dying in terminally ill cancer patients in an inpatient hospice facility. The meanings of the phenomenon of living with dying for these patients were uncovered through the reflections, perspectives, and essential meaning constructions of the multidisciplinary team who care for these patients. The researchers keen interest in this study was to understand: What does a person who knows she is dying experience? How does she handle, cope with, and adjust to day-today living in the face of death: What goes on? What does she need from others in her helpless state, in pain, loneliness, and despair? A historical review of literature on cancer and psychology provided the background context and the realization that cancer patients suffer severe psychological and social disruptions because of the disease and its relentless progress that need attention. It is the realization of these multiple disruptions caused by cancer disease that has been the impetus for the growth of hospice and palliative care. Medicine can no longer solely focus on the biological and physiological aspects of the diseases of cancer but must also address the psychosocial aspects through the establishment of palliative and hospice care. The most essential feature of this concept is the multidisciplinary team including palliative care doctors, nurses, nurses aides, counselors, social workers, and volunteers, who give comprehensive care for pain, symptoms, and psychosocial needs and distresses.
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A review of related literature elucidates that living with dying begins when a fatal condition develops and when medicine can do nothing more to reverse it and preserve life. Individuals in this situation are caught acutely in the living-dying phase of life (Pattison, 1978). Corr (et al., 1997) draw attention to the fact that although there is much that is distinctive about an individual who is dying, he is above all else a living human being with a broad range of needs and desires, plans and projects, hopes, joys and suffering, and fears and anxieties. Dying is a special condition in living and one part of our experience of life. Cancer and other diseases, for which no cures have yet been found, cause deep physiological and psychosocial suffering for the patients and their loved ones. They strike without discretion and generate turmoil and trauma. Whereas low and moderate risk cancer patients may cope and adjust to these quality of life challenges without comprehensive care (McCorkle et al., 1989, Spiegel & Bloom, 1983), this is not the case for high morbidity risk patients with confirmation of a shortened life span (Andersen, 1992). The context of admission to the hospice for terminally ill cancer patients is the difficult transition from traditional curative treatment to palliative and supportive care (Miller, 1994). Rapidly progressing disease, and living with dying can be fraught with stress and poor quality of life because it involves confronting progressive physiological and psychosocial distress and spiritual concerns as well as death. For these patients, added burdens need to be addressed such as adjustment to the new environment of the hospice that will often be their last home, a changed and disrupted life, a need to foster self-esteem, live fully in hope, and continue meaningful and satisfying activities.
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An examination of the literature on coping with living with dying for patients with terminal cancer revealed the challenges confronting these patients. The different approaches are sensitive to the many human aspects of coping with life threatening illness. Although cancer imposes particular stresses it is emphasized that individuals have their own susceptibilities and certain tendencies to cope in their own special patterns. In addressing the multiple concerns and distresses of terminally ill cancer patients, four primary dimensions of palliative carethe physical, psychological, social, and spiritual aspectsare reviewed as they apply to those coping with living with dying. This study, using the perspectives of the hospice team, focused on perceptions of patients responses to physical suffering, psychosocial and spiritual concerns and distress, and their resourcefulness and inadequacies as they lived with dying. To construct a creative synthesis of the phenomenon of living with dying, these research questions were asked: 1. How do terminally ill cancer patients experience the phenomenon of living with dying in an inpatient hospice facility in Delhi, India as perceived by the doctors, sister nurses, nurses aides, social workers and counselor (hospice team)? 2. What are the physiological and psychosocial distresses and predicaments that impact on the quality of life of terminally ill cancer patients as seen by the hospice team? 3. How do dying patients deal with these distresses and adjust to living in an inpatient hospice facility? What are the coping styles and the patterns of adjustment or maladjustment of patients as noted by the multidisciplinary team? 4. What is the experience of team members in caring for these terminally ill patients in a hospice setting? What skills and methods are most helpful?
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5. How does the hospice team cope with the stress of caring for patients who live with dying? The present qualitative research emphasized processes and meanings that could not adequately be measured in terms of quantity, amount, intensity, or frequency. It stressed the socially constructed nature of reality, the intimate relationship between the researcher and what is studied, and the situational constraints that shape the inquiry. It sought strategies of empirical inquiry that would allow connections to be made among lived experiences (Denzin & Lincoln, 1994). The purpose of data production was to accumulate sufficient depictions of instances of the phenomenon under study to permit construction of a pattern that fully described the diverse qualities of the phenomenon (Polkinghorne, 1991). By the very nature of its focus on the phenomenon of living with dying, this inquiry was valueladen and sought answers to questions that stressed how social experience is created and given meaning. The individuals point of view was sought through detailed interviewing and observations resulting in rich descriptions of the social world. Constructivism, the guiding paradigm, stresses that to understand this world of meaning the inquirer must elucidate the process of meaning construction and clarify what and how meanings are embodied in the language and actions of social actors (Guba & Lincoln, 1989). It assumes that the observer cannot and should not be neatly disentangled from the observed in the activity of inquiring into constructions. Multiple, and often conflicting, constructions are all at least potentially meaningful, and truth is a matter of the best informed and most sophisticated construction on which there is consensus at a given time (Guba & Lincoln,1985).
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A heuristic inquiry was chosen to illuminate the structure and essence of the phenomenon of living with dying. The objective of this qualitative, heuristic inquiry was to interpret the perspectives and meaning constructions of the hospice team membersthe doctors, sister nurses, nurses aides, counselor, and social workers, on the phenomenon of living with dying in terminally ill cancer patients (Patton, 1990). The focus was on the researchers personal experience with and intense interest in the phenomenon under study and the participants shared intensity of experience with the phenomenon to discover meanings, essence, quality, and experience (Douglas & Moustakas, 1984). The heuristic analysis concluded with a creative synthesis that included the researchers intuition and tacit understanding. The essence of the person in experience was essential and participants remained visible in the examination of the data and continued to be portrayed as whole persons. Training and work in hospice counseling at the inpatient hospice facility and interest in the phenomenon of living with dying for terminally ill cancer patients came from the researchers personal experience. The researcher realized in this experience that the balance between focusing on the terminally ill family members physical and psychosocial needs was not achieved. In retrospect, there was a need for professional multidisciplinary help to work out ingenious ways to deal with all the physical symptoms and wounds, as well as the psychological distress and the lack of real communication. Reflexivity on the self as researcher or inquirer and the human as instrument or respondent enabled the researcher to come to terms with the choice of the research problem, with those who are engaged in the research process, and with the multiple identities that represent the fluid self in the research setting (Guba & Lincoln, 1981). This represented a
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step in the process of introspection and integration of the world and life of those living with dying. It also addressed the desire to understand humans who suffer from terminal disease. The researcher expected to find that living with dying for cancer patients is a prolonged period of pain and suffering, and psychological and social distress. It is a period of unauthentic communication and poor quality of life during which patients remain vulnerable and hopeless and wait to die. The choice of participants, the multidisciplinary team members of the hospice, was based on their experience and intense interest in the phenomenon. Ethical and logistic difficulties surrounding scientific research with the terminally ill were taken into consideration in the choice of participants. The inpatient hospice facility in Delhi, India granted consent for this study and participants were selected, through purposeful, intensity sampling (Patton, 1990), to choose information-rich cases from which a great deal could be learnt about issues of central importance to the purpose of the research (Polkinghorne, 1991). The methods chosen to elicit the participants perspectives and meaning constructions of the phenomenon of dying were (a) in-depth interviews, (b) follow-up interviews, (c) an instrumental case study, and (d) the researchers observations. The researchers aspiration was to understand the world in all its complexitynot to prove, advocate, advance personal agendas, but to understand. Hence, as a participantobserver her personal experience and empathic insights were included as part of the relevant data, while taking a neutral nonjudgmental stance toward whatever content may emerge. To establish credibility whereby data, analytic categories, interpretations, and conclusions are tested with members from whom the data were originally collected (Lincoln & Guba, 1999),
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follow-up interviews were done to assess the participants intentions for giving certain information; to correct errors of fact or correct wrong interpretations; to volunteer additional information; to put on record the correctness of the researchers recording of information; and to allow for emergence of additional information of the analytic categories and patterns, interpretations and conclusions. Accountability was achieved through ongoing consultations and external reviews with colleagues and through maintaining an audit trail that outlined the research process and the various phases of analysis and determined dependability and confirmability (Lincoln & Guba, 1985). The researcher wrote analytic and self-reflective memos to document and enrich the analytic process, to make implicit thoughts explicit, and to expand the data corpus. This study assembled data from a variety of sources and included 12 interviews with the members of the multidisciplinary team of the hospice involved in the care of those living with dying, as well as follow-up notes, the researchers analytic memos, self-reflective memos, and audit trail. Photographs of patients as well as the Ashram and the team members, taken with permission, provide graphic representations of the context of the study. An instrumental (Stake, 1994) case study of a patient who lived until death in the hospice was also included to validate the individuality of human experience. The use of different qualitative methods of data collection ensured triangulation of data. The heuristic analysis (Moustakas, 1990) incorporated the five basic phases: immersion, incubation, illumination, explication, and a creative synthesis. This process involved identifying larger patterns or themes and the constituent subpatterns or themes in individual interviews with an emphasis on discovery, illumination, and understanding. This led to the development of interpretative schemes that reached the level of structural
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organization (Pollinghorne, 1991) implied by the research questions and organized the phenomenon into a unified whole (Patton, 1990). The fundamental richness of the experience and the experiencing participants was captured and communicated in a personal and creative way to provide an insight into the phenomenon of living with dying in terminally ill cancer patients. Disconfirming evidence was also included (Lincoln & Guba, 1994). Pattisons (1977) living-dying interval (Figure 1) and his temporal model of The Experience of Dying (see Figure 2) were pertinent in describing the findings of this study, as was Dokas (1993) task-based model, which demonstrates that coping tasks differ in the five phases of living with life-threatening illness. Both were consequently utilized and drawn from to formulate a developmental model to describe the phenomenon of living with dying in terminally ill cancer patients in an inpatient hospice facility. The present research produced the following interesting findings, including disconfirming evidence, on issues that do not follow the western example. 1. The essential features of the phenomenon are described using a developmental model (see Figure 3), which illuminates six Quality of Life Themes that arise from the phenomenon, from diagnosis and treatment of cancer disease to the point of death. The transition from curative treatment to palliative and supportive care carry the themes of Limitations and Control, Individuality and Community, and Vulnerability and Resilience. Patients physiological and psychosocial needs and concerns are paramount to compromising quality of life. In the chronic living-dying phase, Managing Psychosocial Distresses highlights a patients need and capacity to cope with other pressing challenges of living. Making Each Day Count by finding purpose and meaning in each day of their
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remaining life is a challenge that if met makes life worth living even in the face of death. Although Acknowledging the Horse on the Dining Table is omnipresent in their lives, hospice patients are perceived to live day-to-day in hope and accept death positively and without fear in the terminal phase of living with dying. 2. The teams accounts do not give evidence of existential distress or disruption (Andersen, 1992; McCorkle, 1989), and depression, anger, and feelings of despair are not significantly apparent either in hospice patients. This contradicts Walshs (1994) evaluation of patients applying for hospice care as well as Achute and Vauhkonens (1970) assertions based on interviews with cancer patients. The mitigating factor may be the comprehensive, palliative, and compassionate care and support they receive. Psychologically, the team contributes to patients need for dignity, care, respect; they live better quality of lives; and they are not always distressed. They are not dependent on family for help, and they cope with disruptions in their lives adequately in this environment. Thus, in palliative care, psychological distress does not play an augmenting role in increasing the experience of pain (Foley, 1986; Jay, 1986). 3. Some patients talk of death especially when there is a death in the hospice and caregivers try to cheer them up, tell them it is Gods will, or that they will get better. Zuehlke (1975) and Kbler-Ross (1986) emphasize that facing death with them honestly, grieving and allowing them to share their feelings and empathizing, rather than pitying (Garfield, 1976) or platitudes is the more effective stance for quality of life (Nichols, 1995; Zerwekh, 1994).
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4. The results have clarified Grollmans (1995) insight that caregivers and family are also challenged with coping with dying. An important finding in the present research is that those who work full time in palliative care do suffer emotional distress. Constantly dealing with dying persons is stressful and disturbing at times. The team members attitudes about death (Walsh, 1994) play an important part in how they cope and adjust to caring for the dying. Most participants coped well with deaths in the hospice. 5. Griffin and Rabkins (1998) research with AIDS patients is pertinent in the context of cancer as well and is substantiated in this study. The participants clarify that patients may be aware of their terminal conditions but do not speak of it. Hope is always present even under difficult circumstances, and perceived control over their illness may explain why depression and anxiety are not present. Most patients are peaceful and comfortable, stress the participants, and are adjusting and coping very well. Griffin (et al., 1998) also found that acceptance of death at advanced stages of progressive disease is more psychologically adaptive, which would confirm this researchs findings. Most accept toward the end, in the last stages, not earlier, and they are prepared. Slowly, as they get worse, not better, weaker, not able to walk, bedridden and frail, they accept, and then give account of their tensions, finish whatever has to be done, and die shortly after. They are frightened of death when not ready. When ready they become happy and accept. 6. Data from the present research suggests that patients are deeply affected by death in the hospice. This contradicts Yaloms (1995) assertions to the contrary. They get disheartened. My heart is small. I am frightened. It is depressing to see that someone they know is dying, and they are sad as if a family member has died and thus, have to constantly face their own mortality. Although patients talk about the death with team
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members and each other to gain support, the experience is demoralizing and they have to live with this distress. The patients are protected from the actual dying process. 7. Six participants stressed the need for distractions and meaningful activities as this can subdue distress and pain and divert them from preoccupations about their situation. They can then feel like they are really living, not waiting to die. 8. Complex interactions exist between the physical, psychological, and social sources of distress and the physical and psychosocial disabilities that accompany terminal illness. These escalate as cancer progresses and can severely compromise quality of life. The results of this study illuminate that patients are perceived to be in a state of high anxiety and vulnerability when they arrive at the hospice, because of physiological suffering and pain, psychosocial needs and concerns, and fear of hospice and death. The levels of anxiety diminish with management of pain and symptoms, and there develops a sense of control over their devastating situation. Attention to their psychosocial needs and concerns reduces vulnerability, and subsequently, patients gain resilience. Their sense of isolation is mitigated with social support from the team and other patients and their families. Through the teams account, despair, depression, and anxiety are not apparent in patients, and they are peaceful. There are reasons for psychosocial distresses and patients are perceived to cope well with support and this enhances quality of life. Findings further reveal that patients often focus on searching for purpose and meaning in their changing circumstances, through living with hope, by sharing their life stories, and working out their own answers to spiritual pain. The teams empathy with the angst they face and their affirmations and reflections as they enter into patients life themes allow patients to evaluate, change perspectives, and
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define the meaning of their lives. They are then perceived to go through a peaceful terminal phase and acknowledge and accept death.
Conclusion
An individual with a life threatening illness or one who is in the process of dying is above all else a person, a living human being. There is much that is distinctive about these individuals, because the pressures of dying often underscore the preciousness of living (Corr et al., 1997). However, like all living persons they have a broad range of needs and desires, plans and projects, hopes, joys and sufferings, fears and anxieties. In fact, each person who is dying is a complex and unique entity with interacting physical, psychological, social, and spiritual dimensions (Saunders, Baines, & Dunlop, 1995) and challenges that are just as powerful, pressing, and significant as physical distresses. Comprehensive, palliative care from the hospice team makes the difference between another good day of living and another terrible day of dying (Saunders, 1976). Loss of control, helplessness and isolation can compromise coping without support. Palliative care ensures effective treatment of pain and symptoms in the acute-crisis phase, which gives patients some degree of control over their devastating situation and improves resilience to manage needs, demands and distresses, preserve appropriate relationships, ventilate feelings and fears and confront reality. Attention and recognition of their many needs, fears, and concerns effectively reduces helplessness and improves resilience as does the emotional and social support in compassionate and trusting relationships. These factors increase the potential to cope with psychosocial distresses in the chronic living-dying phase. Coping with psychosocial distresses of dying is a challenge to patients, their families, and
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the hospice staff and social workers. Depression, anger, and despair are not evident but other negative affects surface. Supportive therapy and counseling improves coping styles and adjustments. When death challenges the values of life, humans realize the importance of hope, maximizing quality of living, and making each day count. They search for sources of inspiration and frameworks within which enduring meaning can be established. Empathizing with the angst they face and reflecting and meditating along with them as they examine their lives provides the opportunity to reconstruct and gain new perspectives. Emotional adjustment and purpose and meaning in life are further enhanced as they gain self-esteem and dignity because their experience is acknowledged and recognized, and they are valued and respected for their courage and endurance. Most are observed to live peacefully, free of pain and symptoms, in the comfort of the hospice, which is a safe refuge, among a community of fellow sufferers and the palliative care team. Meaningful activities and distractions are seen as imperative in this period to enhance purpose and meaning and to subdue distress and suffering. Though awareness of death underlies this whole period, patients prefer to live in hope, because living and facing death at the same time can be intolerable. They cannot look death in the face until they are ready. However, patients are perceived to be in the process of understanding, adjusting, and accepting to the idea. It has been noted that most patients find it psychologically adaptive to acknowledge that they are dying or closer to death. As advanced disease causes deterioration and they get weaker, bedridden, and frail, patients realistically and fearlessly accept death.
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REFERENCES
Adler, P. A. & Adler, P. (1994). Observational techniques. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research, 377-392. CA: Sage Publications. American Cancer Society. (1982). Proceedings of the Working Conference of the Psychological, Social and Behavioral Medicine Aspects of Cancer: Research and Professional Education Needs and Directions for the 1980s. Cancer, 50, 1919-1978. American Cancer Society. (1984). Proceedings of the Working Conference on Methodology in Behavioral and Psychosocial Cancer Research. Cancer, 53, 2217-2384. Anderson, B. L. (1992). Psychological interventions for cancer patients of enhance the quality of life. Journal of Consulting and Clinical Psychology, 60, 552-568. Altheide, D. L., & Johnson, J. M. (1994). Criteria for assessing interpretive validity in qualitative research. In N. K. Denzin & Y. S. Lincoln, (Eds.), Handbook of Qualitative Research. CA: Sage Publications. Bacon, C. L., Renneker, R., & Cutler, M. (1952). A psychosomatic survey of cancer of the breast. Psychosomatic Medicine, 14, 453. Bahnson, C. B., & Bahnson, M. B. (1966). Role of the ego defenses: Denial and repression in the etiology of malignant neoplasm. Annals of the New York Academy of Sciences, 125, 827-845. Bailey, S. S., Bridgman, M. M., Faulkner, D., Kitahata, C. M., Marks, E., Melendez, B. B., et al. (1990). Creativity and the close of life. Branford, CT: The Connecticut Hospice. Bard, M., & Sutherland, A. M. (1955). Psychological impact of cancer and its treatment: Adaptation to radical mastectomy. Cancer, 8, 656-672. Bergin, A. E. & Garfield, S. L. (1994). Handbook of psychotherapy and behavior change. (4th ed.). New York: Wiley. Beutler, L. E., Crago, M., & Arizmendi, T. G. (1986). Therapist variable in psychotherapy process and outcome. In S. L. Garfield & A. D. Bergin (Eds.), Handbook of Psychotherapy and Behavior change. (3rd ed., pp. 257-311). New York: Wiley.
161
Blumberg, E. M., West, P. M., & Ellis F. W. (1954). A possible relationship between psychological factors and human cancer. Psychosomatic Medicine, 4, 277-286. Boerstler, R. W., & Kornfeld, H. S., (1995). Life to death: Harmonizing the transition. Rochester, VT: Healing Arts press. Bryman, A., & Burgess, R. A. (Eds.). (1999). Qualitative Research Part III. CA: Sage Publications. Byock, I. R. (1994). When suffering persists. Journal of Palliative Care, 10, 8-13. Byock, I. R. (1997). Dying Well. New York: Riverhead Books. Byock, S. D. (2000). Assessing and managing depression in terminally ill patients. Annals of Internal Medicine, 132, 209-218. Cain, E. N., Kohorn, E. I., Quinlan, D. M., Latimer, K., & Schwartz, P. E. (1986). Psychosocial benefits of a cancer support group. Cancer, 57, 183-189. Carasso, R. L., Yehuda, S., & Streifler, M. (1979). Clomipramine and amitriptyline in the treatment of severe pain. International Journal of Neurosciences, 9, 191-194. Carey, R. C. (1974). Emotional adjustment in terminal patients: A quantitative approach. Journal of Counseling Psychology, 21, 433-439. Carey, R. C. (1975). Living until death: A program of service and research for the terminally ill. Hospital Progress. Cassell, E. (1991). The nature of suffering and the goals of medicine. New York: Oxford University Press. Cavanaugh, S. (1983). The prevalence of emotional and cognitive dysfunctions in a general medical population: Using the MMSE, GHQ, and BDI. General Hospital Psychiatry, 5, 15-24. Charmaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research. CA: Sage Publications Inc. Colaizzi, P. F. (1978). Psychological research as the phenomenologist views it. In R. S. Valle & M. King (Eds.), Existential-phenomenological Alternatives for Psychology. New York: Oxford University Press.
162
Connor, S. R. (1993). Denial in terminal illness: To intervene or not to intervene. Hospice Journal, 8, 1-15. Corr, C. A., & Corr, D. M. (1992). Adult hospice day care. Death Studies, 16, 155-171. Corr, C. A., Morgan, J. D., & Wass, H. (Eds.). (1994). Statements about death, dying, and bereavement by the international workgroup on death, dying, and bereavement. London, Ontario: Kings College. Corr, C. A., Nabe, C. M., & Corr, D. M. (1997). Death and dying, life and living. California: Brooks/Cole Publishing Company. Davidson, G. W. (1988). Hospice care for the dying. In H. Wass, F. M. Berardo, R. A. Neimeyer (Eds.), Dying: Facing the Facts. New York: Hemisphere Publishing Corporation. Davidson, G. W. (1975). Living with dying. Minneapolis: Augsburg. Denzin, N. K., & Lincoln, Y. S. (1994). Handbook of qualitative research. CA: Sage Publications Inc. Denzin, N. K., & Lincoln, Y. S. (2000). Handbook of qualitative research. CA: Sage Publications Inc. Derogatis, L. R. (1986). Breast and gynecologic cancers: Their unique impact on body image and sexual identity in women. A reassessment. In J. M. Vaeth (Ed.), Body image, self-esteem and sexuality in cancer patients. Basel, Switzerland: Karger. Derogatis, L. R. (1986). Psychology in cancer medicine: A perspective and overview. Journal of Consulting and Clinical Psychology, 54, 632-638. Derogatis, L. R., Abeloff, M. D., & Melisaratos, N. (1979). Psychological coping mechanisms and survival time in metastatic breast cancer. Journal of the American Medical Association, 242, 1504-1508. Derogatis, L. R., Morrow, G. R., Fetting, J., Penman, D., Piasetsky, S., & Schmale, A. M. (1983). The prevalence of psychiatric disorders among cancer patients. Journal of the American Medical Association, 249, 751-757. Doka, K. J. (1993). Living with life-threatening illness: A guide for patients, families, and caregivers. Lexington, MA: Lexington Books. Doka, K. J. (1996). Coping with life-threatening illness. Omega: Journal of Death & Dying, 32, 111-122.
163
Doyle, D., Hanks, G. W. C., & MacDonald, N. (Eds.). (1993). Oxford textbook of palliative medicine. New York: Oxford University Press. Dubovsky, S. L., & Weissberg, M. P. (1982). Clinical psychiatry in primary care. Baltimore, MD: Williams & Wilkens. Engel. G. L. (1980). The Clinical application of the biopsychosocial model. The American Journal of Psychiatry, 137, 535-544. Erickson, F. (1986). Qualitative methods. In M. C. Wittrock (Ed.), Handbook of Research on Teaching. New York: Macmillan. Evans, E. (1926). A psychological study of cancer. New York: Dodd Mead. Fawzy, F. I., Fawzy, N. W., Hyun, C. S., & Wheeler, J. G. (1997). Brief coping-oriented therapy for patients with malignant melanoma. In J. Spira (Ed.), Group therapy for medically ill patients. New York: Guilford Press. Fawzy, F. I., Cousins, N., Kemeny, M. E., Elashoff, R., & Morton, D. (1980). A structured psychiatric intervention for cancer patients: 1. Changes over time in methods of coping and affective disturbance. Archives of General Psychiatry, 47, 720-725. Ferlic, M., Goldman, A., & Kennedy, B. J. (1979). Group counselling in adult patients with advanced cancer. Cancer, 43, 760-766. Foley, K. M. (1986). The clinical use of analgesics. In L. R. Derogatis (Ed.), Clinical psychopharmacology (269-289). Menlo Park CA: Addison-Wesley. Glaser, B. G. (1987). Theoretical sensitivity. CA: Sociology Press. Glaser, B. G., & Strauss, A. L. (Eds.). (1968). Time for dying. Chicago: Aldine. Glaser, B. G., & Strauss, A. L. (1965). Awareness of Dying. Chicago: Aldine. Goldberg, R., & Tull, R. M. (1983). The psychosocial dimensions of cancer. A practical guide for health care providers. New York: Free Press. Gordon, W. A., Freidenbergs, I., Diller, L., Hibbard, M., Wold, C., Levine, L., Lipkins, R., Ezrachi, O., & Lucido, D. (1980). Efficacy of psychosocial intervention with cancer patients. Journal of Consulting and Clinical Psychology, 48, 743-759. Griffin, K. W., & Rabkin, J. G. (1998). Perceived control over illness, realistic acceptance, and psychological adjustment. Journal of Social and Clinical Psychology, 17, 407424.
164
Grollman, E. A. (1995). When your loved one is dying. New York: Wiley. Guba, E. G., & Lincoln, Y. S. (1981). Effective evaluation: Improving the usefulness of evaluation results through responsive and naturalistic approaches. San Francisco: Jossey-Bass. Guba, E. G., & Lincoln, Y. S. (1985). Naturalistic Inquiry. Beverly Hills, CA: Sage Publications. Guba, E. G., & Lincoln, Y. S. (1989). Fourth generation evaluation. CA: Sage Publications Guba, E. G., & Lincoln, Y. S. (1994). Competing paradigms in qualitative research. In N. K. Denzin, & Y. S. Lincoln (Eds.), Handbook of Qualitative Research, 105-117. CA: Sage Publications, Inc. Hall, E. T. (1966). The hidden dimension. Garden City, NY: Doubleday. Howard, G. S. (1991). Culture tales: A narrative approach to thinking, cross-cultural psychology, and psychotherapy. American Psychologist, 46, 187-197 Heinrich, R. L., & Schag, C. C. (1985). Stress and activity management: Group treatment for cancer patients and spouses. Journal of Consulting and Clinical Psychology, 53, 439-446. Hersh, S. P. (1997). Beyond miracles: Living with cancer: Inspirational and practical advice for patients and their families. Chicago: Contemporary Publishing Co. Hinton, J. (1972). Dying. England: Penguin Books. Hinton, J. (1972). Psychiatric consultation in fatal illness. Practical Socialized Medicine, 65, 29-32. Hinton, J. (1973). Bearing cancer. British Journal of Medical Psychology, 46, 105-113. Hinton, J. (1984). Coping with terminal illness. In R. Fitzpatrick, J. Hinton, S. Newman, G. Scambler, & J. Thompson (Eds.), The experience of illness. London: Tavistock Publications. Holland, J. C. (1998). Psycho-oncology in the new millennium. International Medical Journal, 2, 255-257. Holstein, M. (1997). Reflections on death and dying. Academic Medicine, 72, 848-855.
165
Hycner, R. H. (1999). Some guidelines for the phenomenological analysis of interview data. In A. Bryman & R. G. Burgess (Eds.), Qualitative Research, 143-163. CA: Sage Publications. Jay, S. M., Elliott, C., & Varni, J. W. (1986). Acute and chronic pain in adults and children with cancer. Journal of Consulting and Clinical Psychology, 54, 601-607. Kass, J. (1998). Coping with life-threatening illnesses using a logotherapeutic approachStage II: Clinical mental health counseling. International Forum for Logotherapy, 19, 113-118. Kastenbaum, R. (1989). Dying. In R. Kastenbaum & B. Kastenbaum (Eds.), Encyclopedia of death. Phoenix, AZ: Oryx Press. Kastenbaum, R. (1989). Hospice: Philosophy and practice. In R. Kastenbaum, & B. Kastenbaum (Eds.), Encyclopedia of death. Phoenix, AZ: Oryx Press. Kastenbaum, R., & Thuell, S. (1995). Cookies baking, coffee brewing: Toward a contextual theory of dying. Omega, 31, 175-187. Kidman A. D., & Edelman, S. (1997). Developments in psycho-oncology and cognitive behavior therapy in cancer. Journal of Cognitive Psychotherapy, 11, 45-62. Kinzbrunner, B. M. (1994). What to do when anti-cancer therapy is no longer appropriate, effective, or desired. Seminar On Oncology, 21, 792-798. Kissen, D. (1966). The significance of personality in lung cancer in men. Annals of New York Academy of Sciences, 125, 820-826. Kidman, A. D., & Edelman, S. (1997). Developments in psycho-oncology and cognitive behavior therapy in cancer. Journal of Cognitive Psychotherapy, 11, 45 62. Kbler-Ross, E. (1974). Questions and Answers on Death and Dying. New York: Macmillan Publishing Company. Kbler-Ross, E. (1969). On death and dying. New York: Macmillan Publishing Company. Kbler-Ross, E. (1981). Living with death and dying. New York: Macmillan Publishing Company. Kbler-Ross, E. (1986). Death: The final stage of growth. New York: Simon & Schuster, Inc. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer.
166
Lasser, T. (1972). Reach to recovery. New York: Simon & Schuster. LeShan, L. (1966). An emotion life-history pattern associated with neoplastic disease. Annals of the New York Academy of Science, 125, 780-793. Linn, M., Linn, B. S., & Harris, R. (1982). Effects of counseling for late stage cancer patients. Cancer, 49, 1048-1055. Lipowski, Z. J. (1970). Physical illness, the individual, and the coping processes. Psychiatry in Medicine, 1, 91-102. Lynne, J. (1994). Travels in the valley of the shadow of death: Beyond pills and the scalpel. New Haven, CT: Yale University Press. Maddocks, I. (1997). Is Hospice a western concept? (Unpublished manuscript) McCaffery, M., & Beebe, A. (1989). Pain: Clinical manual for nursing practice. St. Louis: C.V. Mosby. Mc Leod, A., Glaetzer K., & Maddocks, I. (1997). Palliative Care Intensive Course. The Flinders University of South Australia: International Institute of Hospice Studies. Maguire, F. P., Lee, F. G., Bevington, D.J., Kuchemann, C. S., Crabtree, R. J., & Cornell, C. E. (1978). Psychiatric problems in the first year after mastectomy. British Medical Journal, 1, 963-965. Margolis, J. (1986). Pragmatism with foundations: reconciling realism and relativism. New York: Basil Blackwell. Margolis, H. (1987). Patterns, thinking, and cognition. Chicago: University of Chicago Press. McCorkle, R., Benoliel, J. Q., Donaldson, G., Georgiadou, F., Moinpour, C., & Goodell, B. (1989). A randomized clinical trial of home nursing care for lung cancer patients. Cancer, 64, 1375-1382. McQuillan, R., Finlay I., Roberta, D., & Forbes, K. (1996). The provision of a palliative care service in a teaching hospital and subsequent evaluation of that service. Palliative Medicine, 10, 231-230. Merrick, E. (1999). An exploration of quality in qualitative research: Are reliability and validity relevant. In M. Kopala & L.A. Suzuki (Eds.), Using Qualitative Methods in Psychology. CA: Sage Publications.
167
Meyerowitz, B. E. (1983). Postmastectomy coping strategies and quality of life. Health Psychology, 2, 117-132. Miller ,R. J. (1994). Supporting a cancer patients decision to limit therapy. Seminar on Oncology, 21, 787-791. Mischler, E. G. (1986). Research interviewing: Context and narrative. Cambridge, MA: Harvard University Press. Monat, A., & Lazarus, R. S. (Eds.). (1991). Stress and copy: An anthology. New York: Columbia University Press. Moos, R. H., & Schaefer, J. A. (1986). Life transitions and crises: A conceptual overview. In R. H. Moos & J. A. Schaefer (Eds.), Coping with life crises: An integrated approach, 32-56. New York: Plenum. Morrow S. L., & Smith, M. L. (1995). Constructions of survival and coping by women who have survived childhood sexual abuse. Journal of Counseling Psychology, 42, 2433. Nelson, C., Treichler, P. A., & Grossberg, L. (1992). Cultural studies. In L. Grossberg, C. Nelson, & P. A. Treichler (Eds.), Cultural Studies, 5-21. New York: Routledge. Nichols, S. E. (1985). Psychosocial reactions of persons with Acquired Immunodeficiency Syndrome. Annals of International Medicine, 103, 765-767. Parloff, M. B., Waskow, I. E., & Wolfe, B. E. (1978). Research on therapist variables in relation to process and outcome. In S. L. Garfield & A. E. Bergin (Eds.). Handbook of psychotherapy and behaviour change, 233-282. New York: Wiley. Pattison, E. M. (1977). The experience of dying. Englewood Cliffs, NJ: Prentice-Hall. Pattison, E. M. (1978). The living dying process. In C. A. Garfield (Ed.) Psychosocial care of the dying patient, 28-40. New York: McGraw-Hill. Patton, M. Q. (1990). Qualitative evaluation and research methods. California: Sage Publications. Polkinghorne, D. E. (1991). Qualitative procedures for counseling research. In C. E. Watkins & L. J. Scheider (Eds.), Research in Counseling, 163-204. Hillsdale, NJ: Lawrence Erlbaum Associates.
168
Plumb, M. M., & Holland, J. (1977). Comparative studies of psychological functions in patients with advanced cancer: 1. Self-reported depressive symptoms. Psychosomatic Medicine, 39, 264-276. Rainey, L. C. (1988). The experience of dying. In H. Wass, F. M. Berardo, & R. A. Neimeyer (Eds.), Dying: Facing the Facts. New York: Hemisphere Publishing Co. Renneker, R., & Cutler, M. (1952). Psychological problems of adjustment to cancer of the breast. Journal of the American Medical Association, 148, 833-838. Richman, J. (1996). From despair to integrity: An Eriksonian approach to psychotherapy for the terminally ill. Psychotherapy, 32, 317-322. Rinpoche, S. (1992). The Tibetan book of living and dying. India: Rupa & Co. Saunders, C. M. (Ed.). (1990). Hospice and palliative care: An interdisciplinary approach. London: Edward Arnold. Saunders, C., Baines, M., & Dunlop, R. (1995). Living with dying: A guide to palliative care. New York: Oxford University Press. Saunders, C., & Sykes, N. (Eds.). (1993). The management of terminal malignant disease. London: Edward Arnold. Schnwetter, R. S., Teasdale, T. A., & Storey, P. (1990). Estimation of survival time in terminal cancer patients: An impedance to hospice admissions? Hospice Journal, 6, 65-79. Schnwetter, R. S. (1995). Overview of hospice and palliative care in oncology. Cancer Control Journal. Schwandt, T. A. (1994). Constructivist, interpretivist approaches to human inquiry. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research, 118-137. CA: Sage Publications, Inc. Schwandt, T. A. (2000). Three epistemological stances for qualitative inquiry. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research, 189-210. CA: Sage Publications Inc. Shands, H. C., Finesinger, J. E., Cobb, S., & Abrams, R. D. (1951). Psychological mechanisms in patients with cancer. Cancer, 4, 1159-1170. Shepard, D. A. E. (1977). Principles and practice of palliative care. Canadian Medical Association Journal, 116, 522-526.
169
Silberfarb, P. M. (1982). Research in adaptation to illness and psychosocial intervention: An overview. Proceedings of the Working Conference of the Psychological, Social, and Behavioral Medicine Aspects of Cancer: Research and Professional Education Needs and Directions for the 1980s. Cancer, 50, 1921-1925. Silver, R. L., & Wortman, C. B. (1980). Coping with undesirable life events. In J. Garber & M. E. P. Seligman (Eds.), Human helplessness: Theory and applications. New York: Academic Press. Silverberg, E. (1989). Cancer Statistics. Cancer Journal for Clinicians, 39, 3-20. Singer, P. A., Martin D. K., &Kelner, M. (1999). Quality end-of-life care: Patients perspectives. Journal of the American Medical Association, 281, 163-168. Slavney, P. R., & McHugh, P. R. (1984). Life stories and meaningful connections: Reflections on a clinical method in psychiatry and medicine. Perspectives in Biology and Medicine, 2. Smith, J. W. (1985). Dying in the Human Life Cycle. New York: CBS College Publishing. Spiegel, D., & Lazar, S. G. (1997). The need for psychotherapy in the medically ill. Psychoanalytic Inquiry; Supplement, 45-50. Spiegel, D., & Bloom, J. R. (1983). Group therapy and hypnosis reduce metastatic breast carcinoma pain. Psychosomatic Medicine, 45, 333-339. Stake, R. E. (1994). Case studies. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research, 236-247. CA: Sage Publications Stavraky, K. M., Buck, C. N., Lott, J. S., & Worklin, J. M. (1968). Psychological factors in the outcome of human cancer. Journal of Psychosomatic Research, 12, 251-259. Stedeford, A. (1984). Facing death: Patients, families, and professionals. London: William Heinemann. Straker, N. (1997). Psychodynamic psychotherapy for cancer patients. Journal of Psychotherapy Practice & Research, 7, 1-9. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. CA: Sage Publications Inc. Strauss, A. (1987). Qualitative analysis for social scientists. Cambridge, England: Cambridge University Press.
170
Taylor, S. E., Falke, R. L., Shoptaw, S. J., & Lichtman, R. R. (1986). Social support, support groups, and the cancer patient. Journal of Consulting and Clinical Psychology, 54, 608-615. Telch, C. F., & Telch, M. J. (1986). Group coping skills instruction and supportive group therapy for cancer patients: A comparison of strategies. Journal of Consulting and Clinical Psychology, 54, 802-808. Telch, C. F., & Telch, M. J. (1985). Psychological approaches for enhancing coping among cancer patients: A review. Clinical Psychology Review, 5, 325-344. Thompson, S. C. (1981). A complex response to a simple question: Will it hurt less if I can control it? Psychological Bulletin, 90, 89-101. Twycross, R. G. (1995). Symptom management in advanced cancer. New York: Radcliffe Medical Press. Walsh, D. 1994. Palliative pain management of the patient with advanced cancer. Seminar on Oncology, 21, 100-106. Weidman-Gibbs, H., & Achterberg-Lawlis, J. (1978). Spiritual values and death anxiety: Implications for counseling with terminal cancer patients. Journal of Counseling Psychology, 25, 563-569. Weisman, A. D. (1972). On dying and denying: A psychiatric study of terminality. New York: Behavioral Publications. Weisman, A. D., & Worden J. W. (1976-77). The existential plight in cancer: Significance of the first 100 days. International Journal of Psychiatry in Medicine, 7, 1-15. Weisman, A. D. (1984). The coping capacity: On the nature of being mortal. New York: Human Sciences Press. WHO Expert Committee.(1990). Cancer pain relief and palliative care. World Health Organization Technical Report Series, 804. Geneva, Switzerland: WHO. Wu, K. K. (1991). Family support, age and emotional states of terminally ill cancer patients. Omega: Journal of Death and Dying, 22(2), 139 - 151. Yalom, I. D. (1980). Existential psychotherapy. New York: Basic Books. Yalom, I. D. (1995). The theory and practice of group psychotherapy. New York: Basic Books.
171
Zerwekh, J. V. (1994). The truth tellers: How hospice nurses help patients confront death. American Journal of Nursing, 94, 31-34. Zlatin, D. M. (1995). Life themes: A method to understand terminal illness. Omega, 31, 189-206. Zuehlke, T. E. (1975). The use of psychotherapy with dying patients: An exploratory study. Journal of Clinical Psychology, 31, 729-732. Zimbardo, H. (1992). Psychology and life. New York: Sage Publications.
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APPENDIX A Shanti Avedhna Sadan, The Inpatient Hospice Facility, New Delhi, India India's first hospice, in Mumbai opened its doors in 1986. Two more hospices were subsequently opened, by the same trust, one in Goa, and the other in Delhi, the Capital city of India. It was the brainchild of a dedicated Oncologist, Dr. Dsouza who saw the urgent need for a place of palliative care for patients in the last stages of cancer. Alongside, other organisations have opened hospices as well as home care programs in India in the last decade. Regular International conferences on Hospice Care have helped to discuss pertinent issues, and share experiences and ideas. The knowledge gained and the thoughts shared has helped to improve the methods of care as well as understand the physiological, psychosocial as well as emotional needs of the terminally ill. This inpatient hospice facility in Delhi opened in 1994. It has provision for 40 beds in two large wards. It focuses on the physical and psychosocial distresses of the patient and family, rather than on the terminal disease. In addition to controlling symptoms, it helps the patient and family confront the issues that accompany approaching death. An emphasis on "total" pain control, including physical, mental, social and spiritual aspects, exemplifies the concept of total patient care. Pain control as well as the management of other symptoms (for example: fungating growths, bedsores, shortness of breath, anorexia, gastrointestinal disturbances, chronic fatigue, weakness, anxiety and depression comprise the primary and ongoing focus of care based on each patient's needs. The hospice patient has eschewed futile treatment or additional treatment aimed at curing the disease, but radiotherapy, chemotherapy and surgery can have a place in hospice care if the symptomatic benefits of treatment outweigh the risks and if the goal of the particular therapy is symptom relief. 1. 2. 3. 4. 5. 6. The Philosophy of Care of the hospice is based on the following concepts: Death is a natural part of the life cycle. When death is inevitable, hospice will not seek to hasten or postpone it. Pain relief and symptom control are clinical goals. Psychological and spiritual pain are as significant as physical pain, and addressing all three requires the skills and approach of an interdisciplinary team. Patients, their families, and loved ones are the unit of care. Bereavement care is critical to supporting surviving family members and friends. Care is provided regardless of ability to pay.
The hospice has opened its doors to patients who are rich, poor or destitute. The two government hospitals refer patients to the hospice when aggressive treatment has failed to cure the disease and patients are in need of palliative care. Many patients who come here have no one to care for them and no money and many are also from far flung villages. For these people the alternative would be terrible suffering on the pavements as they wait for death.
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Patients are accepted irrespective of caste, creed or religion. They are admitted to the hospice in the event that active and aggressive treatment has failed to give respite or improvement from the disease and the cancer has in fact spread thus disabling them and causing pain and suffering. The Ashram offers palliative care and relief from pain and symptoms and is under the care of an Order of Sisters provides its own trained nurses and carries out this humanitarian work. Palliative medication, food, toiletries and even clothing is provided free of charge. The hospices name, which translates to 'the peaceful place where there is no pain", is situated at a very convenient location on the ring road which goes around the large city of Delhi. Two of the largest government-run hospitals of the city, are within a kilometre of the hospice. It is protected from the noise and pollution of this busy road by a pavement and service road well lined by the healthy neem trees. The boundary walls and broad driveway of the Ashram further protect the two large wards inside the building. Plants and trees in the front of the building help immensely in contributing to the peacefulness of this place. The entrance door is very wide and made of glass that has been tinted to keep out the sun that shines relentlessly for eight very hot months of the year. On entering the building one is transformed and transported to another place that is soothing and peaceful. On the left of the entrance is a small reception niche with a phone. Beyond this is a long corridor with kitchens and pantries and storage areas. A small drawing room at the far end of this corridor is used for visitors, donors and friends. The corridor turns right to the residential areas for the Sisters and nurses aides. On the right of the entrance, after a small office for the administrative head is the airconditioned morgue. At the far end of this corridor is the prayer room with a circle of symbols representing the religions of India including Christianity, where patients and families and volunteers alike can come to spend quiet moments. When patients at the ashram finally succumb to their illness they are brought here. A door leads out from this room to the driveway where the hearse takes the patient home, or for burial or cremation. The door to the ward on the ground floor is just beyond the entrance and is very wide allowing for easy movement of beds and wheelchairs. On the right of the door are the treatment room, the nursing superintendent's office and the prescription room. On the left of the door are two rooms with attached bathrooms where patients are brought in from the open ward when there is a medical emergency or when they become critically ill and are in the process of dying. Here families can spend private time with the patients and perform rituals according to their religion. Most important, the patients are close to the Sisters who spend a lot of time administering to them, medically and emotionally, praying with them as well as helping the families. Care is taken to ensure the patient does not suffer in these last stages. Straight-ahead from the door to the ward is the nurses station, a large semi-circular structure. The grey floors, cleaned to a shine, pick up the lights from the windows and envelope the ward in a comforting radiance. Beyond the nurses station is a square room, which is the recreation area for patients and their families, with a TV, comfortable sofas and chairs and a small library. A door at the far end of the recreation room leads outside to a well landscaped area with a path for wheel chairs and a slope leading to a garden with fruit
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trees and flowering plants. Two open gazebos with cement benches provide private spaces. On the right of the door is another space covered with red stone slabs. Chairs are laid out here for patients to sit with others or their families near the well-kept lawns and gardens. To the right and left of the nurses station are a number of cubicles with two beds each, forming a semicircle so that the farthest bed is visible from the nurses station. The toilets are at the far ends of the semicircle. The beds are partitioned with curtains. Each patient gets a cabinet space and a counter that also separates the cubicles. Each cubicle has an air-cooler unit that is a necessity in the summer months. The hospice is not centrally air-conditioned. In winter blow heaters are provided. The place is well ventilated with a number of windows, behind the beds, looking out into the two gardens. The window and cubicle curtains are colourful and make the ward look cheerful. Stretchers, wheel chairs and walkers line the opposite wall and are within easy reach for staff or families to use for the patients. The second floor of the Ashram has a second ward just above the first and also has large rooms with commercial washing machines and sterilization units. A conference room is situated on the first floor where trustees and members hold regular meetings. A carpetlined chapel used by the nuns and also open to patients, families and visitors, is on the first floor. Residential areas for the Nuns as well as the nurse-aides who live in residence are on the second floor. A large terrace provides ample space for drying laundry. The day starts early at the hospice. Patients who are not bedridden bathe and complete toiletries before morning tea. The beds are freshened up and linen changed. Breakfast is served by 7 a.m. Some patients sleep again and the nurses sponge or bathe the bedridden patients. Patients wounds and growths are cleaned and dressed by the Sisters. Patients who can walk move around the ward or go outside to the gardens, do their own washing, or visit with those who are bedridden. Close relationships build up between cubicle mates. Visitors can come in at any time and spend time with the patients. Lunch is served around 12 noon after which many of the patients rest. Some who are feeling well watch TV or visit with each other and play cards, chess and other board games. The schedule of palliative medication continues through the day and night. A very special touch at the hospice is that patients are asked what they would like to eat. The day ends quite early, usually around 9 p.m. Visitors and family members, other than those who will spend the night with the patients, are requested to leave by 8 p.m. The multidisciplinary team of the hospice includes the Sister nurses, who are trained palliative care nurses and who also look after the hospice and live there. There are two palliative care doctors, one is a practicing surgical oncologist, and the other teaches medicine and comes to the hospice everyday. Social workers visit the hospice on designated days every week and spend quality time with each patient and are supportive of the patients needs, reading to them, listening to their problems and concerns, helping them to take care of things they want done. Volunteers, many of them family and friends of patients who have died at the hospice, help to facilitate the smooth running of the hospice. They also organize outings for patients. All this is done in the spirit of the hospices motto--"All around are needs to meet, to be God's heart and hands and feet."
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APPENDIX B
STANDARDS OF HOSPICE OR PALLIATIVE CARE International Work Group on Death, Dying, and Bereavement: National Hospice Organization (1994/1995) and Canadian Palliative Care Association (1995) (Corr, Morgan, & Wass, 1994)
Hospice is a philosophy, not a facility, whose primary focus is on terminal illness. The hospice philosophy affirms life, not death. Helping a person to live may be especially difficult when that person is close to death and is experiencing distress in dying. The process of dying may impose special pressures on quality in living. Still, hospice cares for and about persons who are dying and who are coping with dying because they are still living. The affirmation of life that is central to the hospice philosophy is expressed in an effort to maximize present quality of living. Hospice is a form of palliative or symptom-oriented care that tries to minimize discomfort through alleviation of distressing symptoms though the underlying condition from which they arise cannot be halted or reversed. The hospice approach offers care to the patient and family unit by seeking to provide a sense of security and the support of a caring environment for all those involved in coping with dying not only ill persons, but also families, friends and other involved persons. Hospice is holistic care. It approaches the dying individual as a person, a whole human being and addresses physical, psychological, social and spiritual needs. It seeks to enhance quality of living in each of these dimensions Hospice offers continuing care and ongoing support to bereaved survivors after the death of someone they love. The hospice approach seeks relevant ways to combine professional skills and human presence through multidisciplinary teamwork. Expertise in terminal care and in the management of distressing symptoms is essential as is the availability of human companionship. Human presence can be offered by professional caregivers as well as by social workers and volunteers. Both expertise and presence are dependent upon being available and actively listening to understand correctly the needs of dying persons and their family members. Multidisciplinary teamwork demands respect for the skills and abilities of others, time to exchange information and insights, and a certain amount of role blurring in responding to the needs of those whom the hospice program is serving.
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Hospice programs make services available on a 24-hours a day, 7 days a week basis Hospice programs support their own staff and volunteers. The hospice philosophy can be applied to a variety of individuals and their families who are coping with a life-threatening illness, dying, death and/or bereavement. Some advance notice that dying has begun and death is imminent( in a matter of days, weeks, or months) and some willingness to accept the benefits and restrictions of hospice care are essential.
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APPENDIX C
The Interview Guide
1. In your experience what is the dying patients experience of living until death in a hospice? What are the needs of these patients? What thoughts, feelings and behavior do they show which expresses their distress or other emotions about being sent away from hospital and cure and being sent to the hospice? What do they express about the fact that they are dying and nothing more can be done for them? Do they all accept the reality and face it or do they deny it? Initially or later when they become critically ill? How in your experience do they cope with knowledge of their impending death in a hospice where pain and physical suffering is minimized and they are looked after with compassion and care? 2. What in your experience are the stresses that the dying patients undergo? Emotional, physiological social, and psychological? What are the stresses of the patient who has to live their last days away from home in an in patient hospice facility? 3. As caregivers what is your experience of looking after and caring for the dying? How do you feel about working with patients who are dying? What are your thoughts about this? And how do you cope? Do you find that you behave differently because they are dying? How can the presence of a caring person whether a sister, nurses aide, palliative care doctor, counselor help to make the last stage of life easier for patients in the hospice? 4. How can you help and how do you think you help, handle, deal with, communicate with, listen to and respond to a person living who is dying? Is it difficult to work with patients who are dying and is there nothing you can do to make things better?
5. What are your thoughts about working or living in a hospice? What is the value of such an institution in India for terminally ill cancer patients?
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APPENDIX D
Sample of an Interview
Interview with Dr. Lal (fictitious name), Oncologist and Palliative Care Doctor at the hospice. Malini Mundle (MM) Thank you so much for agreeing to do this interview regarding the quality of life and experiences of patients living until death with cancer. To start with could you tell me a little bit about yourself, your training in general and in palliative care? Dr. Malini, I am a surgical oncologist practicing surgical oncology for the last eighteen years. But sometimes I used to feel frustrated because the patients who have gone beyond the stage of cure, where anti cancer treatment cannot be done, I used to feel helpless because there was no system of palliative care available in the town. When this hospice, came, this was the first movement towards palliative care in Delhi. I got an opportunity to look at this side of cancer and to know there is an opportunity and a scope that we can do something for these patients who are living human beings. As a medical man I feel helpless I cannot cure them, I cannot treat them so that is how my interest in palliative care came. MM So you were looking for the next stage after, Sorry there is nothing more we can do for you. You wanted to send the patients somewhere where they would be given care. The wounds of cancer are something that really need care and looking after. Dr. - Yes, thats exactly it. There was no place where I can send them. There was no home care program available. Of course since this hospice has come, after that there are a couple of home care programs also. But sometimes they need in-house treatment, institutional treatment and there this hospice has been a great help. MM Doctor, morphine is not a prescribed drug, right? When the patients come to the stage of needing morphine they cannot get it at home. Am I right? Dr. They can get it at home, but it is very restrictively available until now, though the government is getting liberal. The government has understood the need and importance of morphine. Of course now an alternative to morphine has become available, that is Funtel transdermal patches, and they are available on prescription of a qualified medical practitioner, over the counter. But of course they are narcotic drugs and certain restrictions have to continue- because of risk of misuse. These patches can also be misused.
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MM - You work here at a Hospital Cancer Unit, and at the a Cancer Hospital but you also work in a hospice. What is the difference that you find between working with patients in a hospital and in a hospice? Dr. You see, at the cancer surgery unit the aim is towards cure, the prolongation of life. Even in palliative surgery the aim is some prolongation. But in hospice setting the whole emphasis is on comfort, on care, on symptom relief. The emphasis is not on prolongation of life. MM What about the attitudes? Do you think that patients who come to the hospice are accepting that they are going to die, or do they think it is a place of cure? What has been your experience? Dr. You see, in India there is a difference in a guarded area. Abroad the practitioner directly talks to the patient and asks if he would like to go to hospice. They do understand the meaning of hospice. In India still the patients and the doctors are not frank enough to talk about death to the patient. Many times I have seen in the last 6 years that the patients do think that they can get cured at hospice. But at the same time my feeling is that the majority of them do understand that they are incurable and they are being taken care of. But the medical professionals, the para-medicals as well as the patients somehow are not frank enough to talk about life and death directly. Of course the relations of each and every patient knows that he is incurable that they are in hospice basically for care. MM So is there always a need for denial or hope? Dr. Denial may be more apparent. In their heart of hearts majority of them know they are going to die, their disease is very aggressive and advanced. Of course hope is always there, always there. MM As you see it, doctor, what do you think is the experience of living until death? We can call them dying patients, but also living patients. Until they die they have to live. What is your experience of this? Dr. In hospice I feel that they try to live a better life. I can give an example. Ashok was a patient. We celebrated Diwali. On that day he was dancing. But you can have an idea of how sick he was he died 2 days later, within 48 hours. That diwali day he begged for my permission to go home. We were concerned because he had wounds on his face that made holes into his mouth. Infection and flies was a problem. Anyway he went home and his family rejected him and asked him to leave. He was devastated. Ram Singh, another patient, was here for 1 1/2 years. He came and went and came and went home. He was doing very well. Then on one trip home he found that his wife has found a new partner. It came to him as a big shock. At the time he was not very ill. However after coming from home that last time he died within a week. I have found that in hospice they are trying to live a better life. They have better courage to live, but something somewhere happens and many times they deteriorate fast.
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MM What about Shailender, that 18-year-old boy? He was accepting of everything, and he found a lot of purpose and meaning in his own life. He told me that the patients should not be sad in the ashram. Everything is taken care of, there is no more struggle. Eat your fill and be happy and make others happy, enjoy life is what he used to say. Dr. That is exactly what I am saying. Because he has understood that death is nearby but somehow the love and affection by the sisters, and us, the relations, the other patientsyou see the atmosphere is slightly different in a hospice. They try to live a better life though death is near. That is my experience. MM Does it help patients that they come to a hospice where everyone else has the same disease and same sort of problems? Dr. Yes, it helps patients, it helps relatives. They are sharing the same sort of grief, that they are seeing death in the near future and that is probably why, when the patient dies, the grief is not that much as you see in a regular hospital or in a home--because they have accepted death as a natural part of life. Somehow they have got the courage because they have probably seen other patients dying over there. So they get courage to accept the reality of life. They share and feel the grief but they dont cry that much. That is how I have seen it. MM- when patients have cancer and gone into hospice because nothing more can be done, do you find that families do not know how to deal with this person? What can they say to make him feel better? So do they have social problems? Old friends do not visit often. Does hospice give the social support that is necessary for these patients? Dr. - Certainly, a lot of my volunteers come and sit with the patients. They keep them company. They celebrate birthdays, marriage anniversaries of dying patients. And not only that, the family also sees and learns how to deal with a patient. So they also learn from others how to relate to their dying family member. Probably I have also learnt a lot in the last 6 years, much more than probably in the last 21 years of my medical life. The hospice teaches you how to deal with this end stage disease. Because we are all in the habit of talking to patients, No, everything will be all right, I will operate on you, theres no problem, everythings okay. But in the hospice it doesnt work. We know that the patient is dying; the relative knows that the patient is incurable. But still we give them hope; hope not cure, not for prolongation of life, but hope for better living, for quality of life till death. MM Do these patients suffer from anxiety, distress, depression, and anger? Or is that not such an apparent thing in hospice? Dr. You see anxiety, depression and all these things, they occur in two stages of the cancer. First thing is the initial diagnosis. But most of the patients live maybe from 6 months to 10 years with cancer, so they have become a little used to having cancer in their lives. I have seen that anxiety is there because of the sometimes-distressing physical
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symptoms. Depression in palliative care is not there to a great extent, particularly if their symptoms are well controlled. If they are feeling pain, if the wound smells, if they are not able to eat, yes then depressions do occur. But depression in my experience is not to such an extent that we all think it may be in palliative care setting. Maybe we dont also talk frankly about that to patients and maybe abroad the patients are asked if they would like to go to hospice and it becomes very apparent that the disease is absolutely incurable. So they feel more depression than in the Indian setting. MM In the Indian setting you as a doctor would try to help the patient become more open to it. You might then encourage him to try to complete unfinished business before dying. Dr. Yes, that is absolutely right. MM So the three-pronged problem and stress the patient has to face--the doctor says I cant do any more; the hospice becomes his home because he cannot be looked after at home, for whatever reason, medical or otherwise; and he knows that he is going to die. Do they cope quite well with this in due course, with some ups and downs or is it always on their heads, too many adjustments? Dr. This is slightly difficult to answer. But apparently they cope well. The other thing unfortunately in hospice in India is that we are seeing more uneducated and poor people. Maybe if we had more educated, upper class and status people we might see more problems with coping and all these things. This is not a very apparent thing. I cannot say definitely how well they are coping but apparently majority of them are coping well. At least I can say they are maintaining their composure very well. MM Patients like this, in your opinion, what do they need? Dr. They tell me who they are. They need self-respect. There is no doubt about it. That is the purpose of hospicewe have to deal with the patients as individuals and give them dignity and self-respect. We have to create that feeling also, that yes you are important to us and to society. I try to teach our volunteers and social workers also that we have to treat them as living human beings and respect them till death and after that the body needs respect too. Self-respect is very much there. The hospice movement is bringing back the human perspective to dying that had been lost when people where dying on the pavements. We take care of the human being and we take care of the body. After death the body is cleaned and clothes are put on and we all pray together and then the family takes the body for cremation. MM Doctor I would like to have your input as a human being working with the terminally ill in a hospice. What has your personal experience been in a place where people come to die with severe physiological distress, which will continue and increase because cancer is unrelenting and progresses till the end. How do you cope with and handle this work?
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Dr. -- As I told you earlier, it gives me pleasure that I can do something which I could not do sitting in a so-called active cancer care hospital. There I used to turn these patients out. I used to call the relatives and say the disease is too advanced, nothing can be done, I am prescribing some pain killers, take care at home. I had dissatisfaction then. As far as emotional distress is concerned probably I do not get so distressed because I am not working as a full time palliative care person. The people who work in full time palliative care do suffer emotional distress and sometimes need psychological help also, because all the time dealing with dying persons is stressful and disturbing at times. So for me the emotional distress is not a problem. When I started my cancer career in 1983 I asked one of my first teachers that the majority of the patients are dying in front of you, how do you feel. He said to me, If you start feeling you wont be able to work. Our job is to treat them to the best of our capabilities and the rest leave to God. Personal feeling should not overcome us in our professional work. I find it very satisfying to work in palliative care. In cancer practice a stage comes when almost 75% of the patients need palliative care. And we are not able to do something for them always. If we can it is very satisfying to give relief from pain and suffering even though there is no cure. MM Do you find that there is a difference in the way you relate to patients in a hospital versus patients in a hospice? Dr. The answer is yes and no in the sense that in an active care hospital the average stay of a patient is 5 days. Sometimes 48 hours sometimes 10 days. But average stay in my cancer unit is 5 days. And after that, two visits before the operation, maybe three, four visits after the operation and that is all. And once the patient is okay he goes to a chemotherapist and radiotherapist and probably after 6 months once the treatment is over, they come for follow-up. So I dont sort of develop a personal attachment with the patient. In hospice setting, since we know that the patient is going to die, talking and communicating to the relatives is virtually on a different platform. So I wont call it a development of a personal relationship, but definitely a different relationship is established with the patient and the relatives and hospice is probably the only place where, even after the death of the patient, the relatives come back and many times ask what they can do. So we communicate with them in a very different way. Definitely the relationship with the patient and family is different, but I may not call it a personal relationship. I dont call them home or go to their homes, but it is different to the relationships in the oncology ward. MM You know patients in hospital have pain and suffering and major problems as cancer patients. Now how do you feel they react to their suffering? Is there a difference in how hospital and hospice patients react to their suffering? Dr. -- In hospital patients, the symptoms of pain and infection are a small part of the problem. If operated, the patient knows that pain and suffering is temporary. While in a hospice setting these are long-term problems until their death. We may relieve their symptoms; we are able to do this most of the time. There are however ongoing problems. The moment we withdraw the treatment the pain will reappear. That is the difference. In a
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hospice setting the symptomatic treatment is temporary while the whole concept of palliative care is on symptomatic treatment. So it has to be continued till death. The coping is also different because there the patient knows it is temporary and he will go home virtually cured of his disease, while in hospice even the patient understands that it is not going to be a curable disease, the medicines are necessary and then only the symptoms can be relieved, the disease cannot be cured. MM Have you seen patients in emotional distress in the ashram? Dr. Yes, I have seen sometimes. I remember there was a couple. Both husband and wife had cancer and both were in the hospice. They were really distressed. And the most unfortunate thing happened. The wife died earlier and then the husband died 5 days later. Patients sometimes are disturbed but it is not a very common happening that they talk to me about it. MM They look to you as a doctor? Dr. Yes in the Indian setting, patients in hospital or hospice look to a doctor as a doctor rather than as a social person. In the same way they look to the Sisters for medical care and the spiritual aspects and dont like to bother them with their problems. So I think they turn to the social workers and psychologists for these aspects of their disease. MM This next question is about quality of life in palliative care. In the Ashram is quality of life taken care of? What factors improve quality of life? Dr. You see, if the patient is in serious pain, he will not be able to eat, he will not be able to do his daily activities, and psychologically he will be depressed. He may ask you for death. The moment you relieve the pain the appetite improves, the depression improves, and he can go to the toilet himself. So this symptomatic relief we give them, the medical aspect, automatically improves the quality of life. Secondly, a lot of people visit, they talk to them, nobody shouts at them, this emotionally improves their quality of life. And then from time to time we do functions to entertain them. So once we give them symptomatic relief, we take care to give social support, and we entertain them, they then feel they are part of day-to-day life. That improves their quality of life. And that is what the whole concept of hospice care is. Physical quality of life, emotional quality of life, and social quality of life we try to take care of. MM Doctor, when I first came to train as a hospice counselor, you and Sister Frances and Sister Hope were there to supervise and support me. At that time I felt that I come into the hospice where most patients are out of necessity, they may rather be home with their families. These are people who are dying but they have no privacy? Dr. In the hospice? They have full privacy. You have seen my wards. Each patient can be separated and isolated if need be. They can maintain some privacy. The only thing is it is a social place. At home also with a majority of people probably they will be
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living seven in a room. Privacy at hospice is more probably than in their home. It is also a social place and there are things happening around the patient to distract him from his problems. They look forward to the visits of social workers. MM So as you said, it is also a social place and there are things happening around the patient to distract him from his problems. And I realize how much they look forward to our visits as social workers. I thought at first that some people come and ask, how are you, all well? And they may resent our wellness and our cheerfulness. I did change my opinion about that. Now doctor, we have some long-term patients in the hospice who are better and can get frustrated because they have nothing to do. The bedridden patients who live in the hospice until death, spend a shorter time there and get the full palliative care they require. What do we do with mobile patients who seem not to have anywhere to go and are there but bored and needing to do something, to be kept occupied? Dr. We call that some sort of rehabilitation program, and some sort of vocational program that they should be allowed to use their time. In fact these long-term patients-there are social problems. They become used to hospice. The family is not there and they are destitute or sometimes the family is not willing to take them homebecause of the small house, or because others are working, daughter-in-law problems. Whatever the reason, once the patient is in a hospice we are not in a situation to throw them out. We also want that these patients should go home for a week or two. But sometimes they dont want to go. But yes, they should be looked after so that they can use their timesit at the reception and attend the telephone calls. Some sort of rehabilitation is required for chronically sick but not very sick long-term patients. MM This process of dying with cancer is a period of vulnerability. What sort of cancer patient copes better than another? Dr. There is no specific answer to this question that one type of person can cope better than another. It depends. We are able to relieve the pain, which is the simplest thing to manage in palliative care. The infected wounds can only be cleaned. The wound is not going to heal. So the patient who only has pain, when this is relieved that patient can cope best. Rather than infected ulcerated wounds, pulmonary metastasis that can cause respiratory distress, coughs which are difficult to treat. MM Do we need more hospices in different areas of the big cities? Dr. You see hospice is the need of the day. Now there are multiple hospices all over the country. There are three hospices of this Trust in different cities, Bombay, Goa and Delhi; then another hospice in Chennai, in Bangalore, in Calcutta, two in Kerala, then the Pain and Palliative Care society in Calicut. The hospice movement has taken a step forward. And maybe after 10 years we may see many more hospices, not only for cancer but also for other chronically medical diseases. A lot of home care programs have also been started all over the country. Home care also does not cost anything. So actually the
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hospice movement should be a combination of in-house and home care programs. And not only that it has to collaborate itself to an active care hospital too. Sometimes these patients may need short-term admission to a hospital and acute care has to be done. So this needs a combination of things, not only an institution hospice or a home care.
MM Thank you so much Dr. Lal for your insights into the phenomenon of living with dying of cancer patients in hospice.
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APPENDIX E Instrumental Case Study Shailender was a slightly built 18-year-old. He had ostrogenic sarcoma (cancer of the mouth). He received chemotherapy from January 10th to March 5th 1998 and then ran out of money. His father brought him to the hospice on May 9, 1999. He died on August 30, 1999 May 9, 1999 Sister Felicitas, the nursing superintendent told me to meet Shailender. She commented on the fact that he was so young. She also told me that his mother had been brought here with cancer and had died in 1996. Shailender looked very weak. He was watching TV in the recreation room when I approached him. He had a scarf around his head to cover a large growth inside the right cheek. He had a metal wire through this growth to hold the mouth in a semiclosed position. As a result his mouth was always open and the tongue compressed to the left side of his mouth. As he sat he had his hand on his temple. I told him my name and asked if he had a headache. He nodded listlessly. I then suggested a head massage, which he agreed to shyly but eagerly. I asked him his name and could not understand or hear him clearly and said so. He wrote his name in English with his finger on his arm. We sat quietly watching TV and I gently massaged his temples, head, eyes and eyebrows. Now and then I made a comment on the programme on TV. He nodded or replied. It was initially difficult to understand his speech compromised as it was by the restricted tongue, but by the end of the massage it became easier mainly because of the great effort he made to pronounce each word. Shailender wanted to communicate, to talk, to share and to be with people. This became apparent even at the first meeting. May 11, 1999 Shailender was walking around the ward and found me talking with another patient. He stood at a distance and indicated by touching his head that he would like a massage. I quietly signalled that I would be with him in 10 minutes and he smiled and went to the recreation room. I started his massage and found him enjoying it thoroughly. He told me that the right side of his face didn't hurt and I could touch the growth. He touched his cheek and I followed suit. He relaxed. I had accepted him. He couldn't contain himself after this and started sharing his story. The fact that he had saved Rs.120,000.00 by taking on so many jobs. He described his jobs. I realized I could understand him clearly. We had made contact. From the beginning he asked for only acceptance, affection and a right to be heard. His conversation was calm. He did not express intense emotions.
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May 13, 1999 While we talked and I massaged him we were joined by Mr. Bhagwan Das . This gentleman and I already knew each other. He is 60 years old and told me that he had hurt his spine in an accident and that is why he is in the hospice. He gave me his medical file which clearly stated that he had cancer in the liver. He says he has poor eyesight and cannot read. His spectacles are not good enough. Any attempt to take him to the ophthalmologist has failed. However, even though he is in denial, he seems to have dealt with a lot of unfinished business. He is a poet and quotes philosophical urdu poetry. Knowing my problem with understanding the very advanced language he patiently translates while I write. Religion and spirituality and an analysis of the religious books preoccupy him. He is opinionated but knowledgeable as well. However, he couldn't understand Shailender and I found wouldn't wait patiently for him to finish speaking or try to understand. Bhagwan Das asked Shailender and me a mathematical quiz. I worked hard mentally to solve it but, before I could, Shailender had the answer. He solved some more. Then Bhagwan Das started a discussion on sorrow and happiness in the hindu way of life. Again Shailender tried to give his point of view but was impatiently interrupted. May 17, 1999 As usual I met Shailender in the recreation room around 2 p.m. and massaged his head. I touched his right cheek and said that it had not grown. He agreed. He was quiet and subdued and had a headache. I hoped we could just be alone and chat. It had been a busy morning for me as many of the patients or their families called me to them or stopped me to talk. I feel that I am blessed with so many new friends and relationships. In sharing their concerns and fears and doubts a weight seemed to lift from their shoulders and I tangibly felt that. I wished I could be at the Ashram everyday and for longer but was also aware of the fact that I needed to refresh and reenergize myself. As it happened today Bhagwan Das and his cubicle mate, Mr. Gupta, joined Shailender and me. This gentleman has throat cancer and is unable to talk clearly. He is fed through a pipe. His son spends the time with him. Mr. Bhagwan Das and Mr. Gupta have a comfortable relationship and their families have got to know each other and share snacks etc. Both of them are not bedridden and not in too much discomfort. The conversation was lively with Bhagwan Das telling us about his many jobs as a cloth shop merchant, a vendor at the railway station and so on. He likes to have an audience and does not like to be interrupted. Soon began a conversation on the Ramayana, the Hindu religious scriptures and Shailender rapidly gave his point of view but could not be understood. In fact, at one point Bhagwan Das dismissed what little he had understood as knowledge gleaned from the TV and not from studying the scriptures. This quite incensed Shailender and he denied it vehemently. At this point I told both of them that this was becoming an unequal argument. I requested Shailender to write his answers to Bhagwan
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Das and to ask his own questions. But Bhagwan Das of course had his own weakness. He could not or would not read. I asked one of the male nurse aides to read out anything Shailender would write for him. In the evening I went out and bought Shailender two journals and pens. On my return I met sister Felicitas and I told her about the journals. This is when she told me that Shailender's father had not come to visit him even once after bringing him to the ashram. It was around 7 p.m. and I could not find him in the ward. Finally I came upon him in the beautiful garden of the Ashram. The sun was just setting and he stood motionless, his face partially covered with the ever present towel to hide his growth, looking very peaceful in the deepening colours of dusk. I startled him, as he has never seen me in the hospice at this hour. I gave him the journals and suggested that he use one to write what he wanted to say in daily conversations with his friends, the nurse aides, and volunteers and me. I requested him to use the other one to write in more detail the story of his life, which he had already started telling me. He was very pleased with this. His face seemed to light up and he said, "thank you" in English and wanted to start right away. May 19, 1999 Shailender rushed up to me excitedly to show me what he had written. In the short time since I gave him the journals he had written many pages in a beautiful hand. His writing was as clear as his speech could no longer be. His style was simple, flowing and imminently readable. He gratefully acknowledged the fact that I had so quickly been able to understand his speech and realized the usefulness of writing his story. "Now when I want to talk to people who ask me about myself I can ask them to read this." Already many people had read "My Story" and he felt acknowledged for who he was. He now had an identity, was admired for all that he had achieved in his young life, the grief, sorrow, trauma, and a complete change of everything he cherished. But I noticed that no one pitied him because he did not pity himself. In fact, his friendliness, his good humour and good will made him a lot of friends. May 23, 1999 I read his poignant story. He tells his story candidly but without being distracted by the emotional aspects. When I spoke to him about his story he was able to share with me his worry for his young sisters. "It is not good that with their father alive they must live with relatives. It is also not safe and they can be abused if not protected. I regret that I have this problem just when I was earning well and could in due course look after them. I wish my father would see the error of his ways and take care of them. Anyway I have done what I could and can only hope. It is in God's hands." The TV was malfunctioning and Shailender knew just what to do to fix it. He seemed to have built up relationships with family members of his fellow inmates and he was now quite at home in the Ashram. He told me how much he appreciated the care and love the nuns and nurses and others showed him. But it was true that because he was not depressed
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or despairing of his condition and was generally cheerful he attracted a lot of people to him. He seemed well satisfied with how he had dealt with life. Some of the nurses-aides joined us as we talked and said they had read his story and told him how brave and clever he was. They bantered and laughed with him. He was accepted with his ugly deformity. May 24,1999 Today Shailender was in bed, very quiet and resting. When I went to him in the afternoon he was still in the same position. Not wanting to leave without checking if he would like to see me I went up to him. He said he was not well. He had a stomach upset and didn't feel like talking. I sat by his bedside for a while. A short while later he pulled himself up and told me his father and his aunt had visited him the previous evening. "When I see their faces I feel the anger boiling inside me. How dare she come after accusing me of sleeping with her? I could barely tolerate their presence. Their visit has upset me a lot. How much I have explained to my father to change his life and look after my sisters. But he is doing nothing." His concern for his sisters is most urgent and he feels his hands are tied. It is the only thing that is unfinished for him. I told him that he has done and said everything in this regard. He cannot expect a change overnight but he must know that he has been able to help his sisters by just bringing up their plight with his father. Where his father was concerned he was living his life and judging him harshly would not change the path he had made for himself. "Yes, it must be his karma," Shailender replied. Shailender requested a head massage and I complied. Slowly he began to relax and the nurse aides joined us and offered him some food, which he happily accepted. He hadn't eaten all day. When I left that evening Shailender was totally engrossed in his journal. May 25, 1999 When I met Shailender today he was sitting on his bed in another part of the ward. More male patients had been admitted so he was put in a cubicle with an elderly lady. In the hospice one half of the large ward, which has a semicircular structure, houses the ladies and the other half is for the men. I remarked that having shared his life story from that bed he had now moved forward. He smiled and said that he should now get a new perspective on his life! This young man was ready for any challenge. I asked Shailender, "What is the purpose and meaning of your life? "Do you feel you have freedom to choose an attitude about what happens in your life or is it not in your hands and everything just happens? "Can you detach yourself from your situation and see another view of it--one that has
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humor perhaps and helps you to rise above your predicament by detaching yourself from it? "Do you feel your life has been fulfilling? Have you been in control of it or is it in the power of external factors? Do you look at life optimistically? Are you actively involved in meaningful relationships with people? Do you feel there is something new and different in each day of your life? Do you find facing a new day and your tasks a source of some joy and happiness or not? Life is transitory. Do you feel there is any need or purpose in making it meaningful and something that you appreciate even now when you have cancer? Is there a reason and a meaning to your suffering? Do you feel strongly motivated to do things that seem important and necessary for you to do which you know will give your life a purpose? Do you have some definite goals and a delightful reason to live or not? Are you unable to make the changes and adjustments required to do something you very much want to do? Shailender wrote out these questions nodding enthusiastically as if he understood the significance of some of them. They touched a chord somewhere. He became excited at the possibility of looking at his life in this new framework. May 27, 1999 I need to indulge in a bit of the esoteric. When I reached Shailender's bed as I went around greeting everyone this morning I was taken aback with a sense of lightness and gaiety that emanated from him. He sat cross-legged on his bed, without the towel covering his head and cheek. He was obviously waiting for me to come to him. If his smile were not restricted by the growth on his cheek it would have spread from ear to ear. He looked like sunshine. He said, Cancer makes people go crazy. We all should eat and relax. What I have is just a boil. I hope it will burst outwards. If it goes away I will be healed and then I know what to do. I have seen everything and done everything for the last 18 years. I have even had a bank account since the age of 15. (He gave the wrong age so he could deposit his money and protect it). At 16 I had Rs. 120,000.00. When my father found out he wanted me to come and live with him. His mistress, my aunt, was greedy. She accused me of sleeping with her in the hope that she would get money from me. That is when I tried to kill myself by fasting. I finally came to this Ashram. I am so lucky to be here where everything is taken care of. I have no tension. They give us any food we want. This is a
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clean place with wonderful people in it. So when we patients have everything why are we upset or depressed or anxious. We should be happy and eat well and be thankful." Sister Lima told me that for the past two days Shailender had been feeling very well. In fact he had been overeating and had to have digestives!!!!! May 28, 1999 The journal is filled with Shailender's writing. He is intensely involved in it. In fact the nurse aides told me that he has to be coaxed to eat his food on time and stop writing. Shailender explained that eating takes a lot of time and gets messy because of the growth and he then has to wash up so he likes to finish one string of thought before eating. Shailender had asked for a chessboard as he can play and I gave one to Sister who gave it to him to use. My father, a chess player, came with me to play with him and teach some of the patients and nurse aides. Before long there was a crowd around his bed with relatives of patients joining in. He had found another way to relate to people. He beat my father and he was proud of his win. Soon another game was started and he was quite occupied. We didn't spend much time together. I had already informed Shailender that I would be leaving on the 2nd of June. He had met my daughter who came visiting one day. He asked me if I would leave her and go back. I said yes because life is full of meetings and farewells and she now has her own life in Delhi. Today I told Shailender to finish as much as he could of his journal so I could read it and talk about it before I left. I asked him if I could take his photograph. He said no but asked for my photograph. I said I would bring it the next time I came before I left. May 30, 1999 Shailender was engrossed in a game of chess. He stopped when I came over and asked for a massage after a long time. He was quiet but peaceful. He had obviously become attached to me but his own extroversion had made him many friends who enjoyed his company. I was not leaving a young and sad man who had come to the ashram earlier this month. Not able to live as he had done before and not able to die. Instead he had told his story and been heard and acknowledged. He in fact rewrote his own story again and put it into perspective. It seems that he has put his life behind him and started a new one as part of the ashram. He said to me that his sisters' situation worries him but they are not complaining. In fact he must accept the fact that they are obviously preoccupied with their lives, as they hadn't written to him. He has done the best he knew how and could pray that his father would take on his responsibilities. Of course it could be that living with the maternal uncle
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is better off for them. He has decided to let things run their course, as his worrying doesn't help. He is in no position to do something for them today. If he gets better he will work on the problem then. MY LIFE written by Shailender (translated) written between May 17-20, 1999 I was born on 24th November 1982 in Gandhi Nagar, Delhi, at 1 a.m. in the morning. When I was 5 years old my father took my mother and me and went to the village. At that time my father worked as a manager at Jullundur Automobiles co. When we reached the village my father took my mother and me to my maternal grandparents house because he did not have parents anymore. My father's mother died when giving birth to him in the house. His father, (my grandfather) left the baby and the dead mother immediately, as they were, and went to become a sadhu. For 2 days my grandmother's dead body lay there and the baby was in the same state as when he was born lying close to her. My grandmother's parents had been informed and on the second day they arrived there and thought that the baby must be dead. However, when they bought milk at the village and fed the baby he recovered some strength. My father's mother was cremated there and he was brought to his maternal grandparents village where he was cared for and looked after. When he grew up my father's marriage was arranged. He was then asked to set up home elsewhere and he and my mother found a house. My mummy and I and one sister lived there. In due course we became two brothers and two sisters. After this we led a life filled with laughter and happiness. Sometime after a sadhu (holy man) told us: When man is happy he does not remember God. When sorrow comes then people remember God. However if man takes God's name when he is Happy, then he will never have sorrow. When I was 13 years old my mother left me and went away (she died). At the time I was studying in class 8. After my mother died my father got me a job. After that his mind did not turn towards the home. In 1996 my brother died. From childhood I was very attached to my brother. In early 1997 I had an accident. At that time I used to go to school. I was returning from school. My boss and his wife loved me a lot. When I went to work for them they sent me to school and would have me dropped and picked up from school in the car. Therefore I would reach school on time and after school from 2 p.m. to 9 p.m. I would work at a job. Then I would work at a bakery till 11pm. After so many jobs I would never complain to anyone that my
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body aches. At that time I earned very well. My father did not care for my two younger sisters or me. Then I got mixed up with the wrong kind of friends. After I would get back after a whole day's work and reach home tired at 11 p.m., I would sit with these friends and drink liquor. This is because at that time I had so much tension and I could not talk about it. I used to think that my father does not care for or give me any attention nor does he look after my two sisters. Even then I took my sisters to live with my mother's brother and regularly sent Rs. 2000 every month for their needs. My income was Rs. 6000 at that time out of which I would give my uncle Rs. 2000 and I would spend Rs. 4000 on myself. That day when I was returning from school my boss' driver came to pick me up. He had drunk liquor that day. I was not aware of this. I got into the car. This man used to drive the car very fast and I knew this from before but that day suddenly near the Nehru Stadium traffic light I don't know what he thought but he slammed into a bus. I was sitting on the front seat and my face slammed against the front and one tooth broke and some blood oozed out. I thought if a tooth breaks some blood would be there. Afterward gradually a wound spread inside the flesh. I showed it to a doctor and I was operated upon. I continued to work for a year and got treatment. Then my money finished. I told my father about it but he still did not care for me at all and when I asked him for money for treatment he would say that he had no money to give me. He would tell me to earn my own living and get treatment. He used to say this because after the death of my mother, his brothers wife had spun a web around him and trapped him and this situation continues to this day. I am one son who could not talk about my father's illicit relationship to him because he is older than me. However when the water is going over one's head then one has to do things to save ones self. One day in this terrible condition I drank a lot even though I knew that if one drinks cancer develops faster. However I didn't care for my life. I was very concerned for my innocent younger sisters. After drinking I talked to my father and explained about his relationship and he beat me badly and did whatever he could with me. The next day he realized his mistake and asked my forgiveness. At that time I thought that perhaps my father had come to his senses. After two or three weeks he went back to his old ways and I explained to him that it would be better if he got married to his sister-in-law. After that day for a whole year I wandered here and there. Sometimes I went to a temple, then to a mosque, a gurdwara or a church. Wherever I got food I would eat and go to sleep. Then one day I thought why don't I stop eating and die in front of some temple. For ten days I went from one temple to another and starved. Then I understood that I should do puja to God Shiva because people from every religion revere him and every caste believes in him. He has made the world and the universe (shrishti). God Shiva made four religions for the world but man with his ego has made more than 400 religions. When I focussed on Om Namaha Shiva then everything got remedied and improved for me. I did not have money to perform puja so I went back to my father and asked him to admit me to the same place
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where my mother had been admitted when she got cancer. So he brought me here to Shanti Avedhna Ashram where I got the love of a mother and brothers and sisters. Whenever a woman touches my forehead with love, I remember my mother. Whenever the aunty who gave me this notebook to write on puts her hand on my forehead then I forget all the grief and sorrow of the world. I feel as if I have found my mother again. I was deeply attached to my mother and brother. When my mother was angry with me she would beat me and then burn her hand in fire. I would say to her, "Ma, why do you do that? I am a child and do make mistakes." My mother loved me a lot. Her face and looks were just like Anuradha Paudwal. Even today when I see this lady's face I remember my mother. Since I have come to the ashram I have no lack of love. Here I have been given the love of a mother, brothers and sisters. However I feel great disgust at the mention of the word father because it happens to everyone that when the children's mother is not there then the life of the children gets destroyed. What will happen to my life I do not know but I have settled my sisters' lives. I have put Rs.20,000/- in a fixed deposit in each of their names and now I am living a comfortable life . Here the love I have received from the sisters and mothers has taken my pain and sorrow far away. MY LIFE The following story was written from May 25-30, 1999 after receiving questions regarding purpose of life. (this version shows a change in perspective.) When I was 13 years old my mother died. One year later in January of 1996 the life and situation of my family began to get ruined. My father's mind and heart moved away from the house and got attached elsewhere. I can say that his heart got involved with different women and I understood that our lives were being ruined. I turned my attention on myself and started working and I was able to take care of my expenses. I earned Rs. 500 for 6 months and then I found I liked working in a bakery and learned all the work like making bread, biscuits, cakes and pastries and all the other work in 6 months. I learnt the work so well and so fast because I had this worry and burden that if I do not have a livelihood then what would happen to my future life. If I do not learn some type of work now then what will happen later no one knows. I always put my mind on work and studies because I was worried at my father's attitude and I thought that I have to take control of my life if not for myself at least I have to do something for my brother and sisters. Then it was God's will that after I learnt the work I got jobs in two places. One of course was the bakery and the other was in the shop of the bakery. My salary became Rs. 6000/month. I took my brother and sisters' to live in my mother's brother's house and gave my uncle and aunty Rs. 2000/month for looking after them. I also sent them clothes and food. When I started doing so much for them my father heard about it and the little attention he gave to the children he finally withdrew.
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My father then started living with his brother's wife. I was staying with him in Delhi at that time and then I got more upset and crazy because even though he was womanising it went on outside the house. Now he had brought his sister-in-law and her children to live with him and I lost my mind. I thought to myself, that I am working and also studying at such a young age, looking after family expenses and after doing so much, father is going crazy, so I am not going to do anything for anyone. What ever I am I will be for myself. As a result I wavered from the right path. At night when I would come back from work I would get drunk and go to sleep because I could not bear to see what was going on in front of my eyes. Whatever the bad deed if someone from your own family does it its difficult to bear. If the person is a brother or uncle its a different story but if your own father does these bad deeds in front of his son then you can imagine what transpires for him. It is not even that I cannot understand but seeing it all I just couldn't sleep at night. I took the help and aid of liquor and then I started fulfilling all my desires. At this time I stopped eating at home and after work I would go to a restaurant and eat and drink with my friends and go home to sleep. I continued life in this way for six months and then my brother fell ill. For three or four months I brought him to Delhi and got treatment done. However he could not be saved and he died. This brought me back to my senses and I realized what I had been doing was wrong. If I had saved my money I could have taken him to a private hospital for treatment and he may have become well. Now I had two sisters to look after. I thought, whatever happens who knows if it is in one's hand or not. Everything happens according to God's will. I took a hold of myself and settled down again. My brother died in 1996 and after that I again started saving money and in one year had saved Rs. 60,000. It was in December of 1997 that I had an accident in which I broke my tooth. At that time there was no change in my face. I continued to work for six months. Then a very gentle pain started inside the flesh on the right side of my face. I started treatment. At this time I was studying in Class 10. I was operated on three months before the board exams. I showed my medical certificate and gave the Class 10 board exams. During this time I had Rs.one lakh and twenty thousand. If I wanted I could have got treatment in some good hospital but I reasoned that the doctors say I have cancer and my mother also had cancer and was treated, as was my brother. If these two couldn't be saved then how will I be saved? I turned my attention to my sisters. After I die who will look after them and what will happen to them. They are too young to earn their own living so that they can eat and live their own life. So I put my money in their name. Then I picked up what jobs I could and fed myself. I didn't go back to my father and since I got sick he did not give any attention to me. He thought that since he has not got much of what I earned from me so why should he take
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care of me. My father did not even know that I had saved money in the bank. If he had known perhaps that money would not have been with me. When I put the money in my sisters' names he came to know that I have money. That is when he asked me to come and live with him so that he could take the money from me. He tried all kinds of tricks in collusion with his sister-in-law. My aunt, damn bitch, was such an actor that no one in films has done such good acting. Laughing, crying, and tantrums--I knew them all but I would still not say anything. I kept trying to make my father understand but he would get angry with me. When I went to live with him finally I was in poor shape but even then my aunt accused me of raping her. For the third time I left my father's house. After this I wandered here and there and after a long time I realized that in life it is not so easy to die. So I came to Shanti Avedhna Ashram and finally found peace. Here the care is just like the name of the place: Shanti--peace, Avedhna--without suffering, Ashram--place of rest, a peaceful place of rest without suffering. After so much had happened to me I still did not keep myself in a state of upset. I think sometimes that if I hadn't got cancer then I would have become something else. I would have finished my studies and moved toward starting a new business. I have always looked to the future. What has happened before so let it be. I have always put my mind to the future. I have never thought that I have so many troubles and should try to back away from them. I kept my troubles to myself, and that too because I am earning and eating and soon the difficulties will go away. Even after reaching this condition I have never felt that I am useless. After coming here I am very happy. Even though in my family no one cares for me I have found even a mother's love. The nuns and Malini aunty have given this love to me. I have had the love of sisters from the nurses. Here there are three male nurses who come everyday who love me more than my own brother. I have never felt that I have cancer and neither do I let myself worry if I will live or die because I have cancer or any of these upsetting thoughts. I just think, "eat, drink, take God's name; whatever has to happen will be good. And I find that it has been good. Here I do not miss my brother, sisters, relatives or remember them, and nor do I feel as if I am lacking in anything. I do not have any grief or sorrow anymore. I let happen whatever is happening. In future if I live I will accept that what I have done I have done for myself because my sisters are everything to me. I am still alive. In society some relationships exist or are made for which man is ready to give his life. Whatever is happening now and what will happen later there is always a purpose for it, because without purpose and meaning nothing happens. I can wish that what I hope for my future would be granted. (Shailender passed away on August 30, 1999. His growth opened and formed a wound and Sr. Felicitas told me that he suffered in the last 2 months.)
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APPENDIX F Patterns and Themes of the Sample Interview We give them hope; hope not for cure, not for prolongation of life, but hope for better living, for quality of life till death. INPATIENT HOSPICE CARE IN INDIA THE CANCER DISEASE IS TOO ADVANCED, NOTHING CAN BE DONE. TAKE CARE AT HOMEI got an opportunity to look at this side of cancer and to know there is an opportunity and a scope that we can do something for these patients who are living human beings. Sometimes they need in-house treatment, institutional treatment and there this hospice has been a great help I can do something which I could not do sitting in a so-called active cancer care hospital. There I used to turn these patients out. I used to call the relatives and say the disease is too advanced, nothing can be done, I am prescribing some pain killers, take care at home. I had dissatisfaction then. Sometimes I used to feel frustrated. There was no place where I can send them. There was no home care program available. Of course since Shanti Avedhna has come, after that there are a couple of home care programs also. I got an opportunity to look at this side of cancer and to know there is an opportunity and a scope that we can do something for these patients who are living human beings. Sometimes they need in-house treatment, institutional treatment and there this hospice has been a great help. HOSPICE TEACHES HOW TO DEAL WITH THIS END STAGE DISEASEWe know that the patient is dying; the relative knows that the patient is incurable. But still we give them hope; hope not cure, not for prolongation of life, but hope for better living, for quality of life till death. I have also learnt a lot in the last six years, much more than probably in the last 21 years of my medical life. The hospice teaches you how to deal with this end stage disease. Because we are all in the habit of talking to patients, everything will be all right, I will operate on you, theres no problem, everythings okay. But in the hospice it doesnt work. We know that the patient is dying; the relative knows that the patient is incurable. But still we give them hope; hope not cure, not for prolongation of life, but hope for better living, for quality of life till death.
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WORKING WITH PATIENTS IN A HOSPITAL AND IN A HOSPICEIn hospice setting the whole emphasis is on comfort, on care, on symptom relief. The emphasis is not on prolongation of life You see, at the cancer surgery unit the aim is towards cure, the prolongation of life. Even in palliative surgery the aim is some prolongation. But in hospice setting the whole emphasis is on comfort, on care, on symptom relief. The emphasis is not on prolongation of life. ON PATIENTS ATTITUDE TO HOSPICE IN INDIACURE OR CAREI have seen in the last six years that the patients do think that they can get cured at hospice. But at the same time my feeling is that the majority of them do understand that they are incurable and they are being taken care of. You see, in India there is a difference in a guarded area. Abroad the practitioner directly talks to the patient and asks if he would like to go to hospice. They do understand the meaning of hospice. In India still the patients and the doctors are not frank enough to talk about death to the patient. Many times I have seen in the last six years that the patients do think that they can get cured at hospice. But at the same time my feeling is that the majority of them do understand that they are incurable and they are being taken care of. TALKING FRANKLY ABOUT DEATHIn India still the patients and the doctors are not frank enough to talk about death to the patient. In India still the patients and the doctors are not frank enough to talk about death to the patient. The medical professionals, the paramedicals as well as the patients somehow are not frank enough to talk about life and death directly. Of course the relatives of each and every patient know that he is incurable that they are in hospice basically for care. Maybe we dont also talk frankly about that to patients and maybe abroad the patients are asked if they would like to go to hospice and it becomes very apparent that the disease is absolutely incurable. So they feel more depression than in the Indian setting. I try to help the patient become more open to it. PATIENTS IN HOSPICE IN INDIAUneducated and poor people We are seeing more uneducated and poor people in hospice in India. THE HUMAN PERSPECTIVE OF LIVING WITH DYING IN HOSPICEThat is the purpose of hospice we have to deal with the patients as individuals and give them dignity and self-respect
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They need self-respect. There is no doubt about it. That is the purpose of hospicewe have to deal with the patients as individuals and give them dignity and self-respect. We have to create that feeling also, that yes you are important to us and to society. The hospice movement is bringing back the human perspective to dying. We take care of the human being and we take care of the body. After death the body is cleaned and clothes are put on and we all pray together and then the family takes the body for cremation. PATIENTS PAIN AND SUFFERING IN HOSPICEIn a hospice setting these are long-term problems until death. The moment we withdraw the treatment the pain will reappear. In a hospice setting these are long-term problems until death. We may relieve their symptoms; we are able to do this most of the time. In hospice even the patient understands that it is not a curable disease, the medicines are necessary for symptom relief. The moment we withdraw the treatment the pain will reappear. SYMPTOMATIC TREATMENT IN PALLIATIVE CAREThe whole concept of palliative care is on symptomatic treatment so it has to be continued till death. In a hospice setting these are long-term problems until their death. We may relieve their symptoms; we are able to do this most of the time. There are however ongoing problems. The moment we withdraw the treatment the pain will reappear. In a hospital setting the symptomatic treatment is temporary while the whole concept of palliative care is on symptomatic treatment. So it has to be continued until death. In hospital patients, the symptoms of pain and infection are a small part of the problem. If operated, the patient knows that pain and suffering is temporary. While in a hospice setting these are long-term problems until their death. We may relieve their symptoms; we are able to do this most of the time. There are however ongoing problems. The moment we withdraw the treatment the pain will reappear. That is the difference. PATIENTS PRIVACY IN HOSPICEPrivacy at hospice is more probably than in their home. The thing is it is also a social place. They have full privacy. You have seen my wards. Each patient can be separated and isolated if need be. They can maintain some privacy. The thing is it is also a social place. At home also with a majority of people probably they will be living seven in a room. Privacy at hospice is more probably than in their home. It is also a social place and there are things happening around the patient to distract him from his problems. They look forward to visits of social workers. CONCEPT OF HOSPICE CARE--QUALITY OF LIFEphysical, emotional and social till death.
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That is what the whole concept of hospice care is, physical quality of life, emotional quality of life, and social quality of life is what we try to take care of. Hope not for cure, not for prolongation of life, but hope for better living, for quality of live till death. HOSPICE IS THE NEED OF THE DAYthe hospice movement should be a combination of in-house and home care programs. And not only that it has to collaborate itself to an active care hospital too. Sometimes these patients may need short-term admission to a hospital and acute care has to be done. So this needs a combination of things, not only an institution hospice or a home care. You see hospice is the need of the day. Now there are multiple hospices all over the country. There are three Shanti Avedhna Ashrams in different cities, Bombay, Goa and Delhi; then another hospice in Chennai, in Bangalore, in Calcutta, two in Kerala, then the Pain and Palliative Care society in Calicut. The hospice movement has taken a step forward. And maybe after 10 years we may see many more hospices, not only for cancer but also for other chronically medical diseases. A lot of home care programs have also been started all over the country. Home care also does not cost anything. So actually the hospice movement should be a combination of in-house and home care programs. And not only that it has to collaborate itself to an active care hospital too. Sometimes these patients may need short-term admission to a hospital and acute care has to be done. So this needs a combination of things, not only an institution hospice or a home care. DR. LALS EXPERIENCE OF WORKING WITH LIVING WITH DYING BACKGROUND AND INTEREST IN PALLIATIVE CAREAs a medical man I feel helpless I cannot cure them; I cannot treat them so that is how my interest in palliative care came. I am a surgical oncologist practicing surgical oncology for the last eighteen years. I have been in medicine for 21 years. But sometimes I used to feel frustrated because the patients who have gone beyond the stage of cure, where anti cancer treatment cannot be done, I used to feel helpless because there was no system of palliative care available in the town. I can do something now which I could not do sitting in a so-called active cancer care hospital. There I used to turn these patients out. I used to call the relatives and say the disease is too advanced, nothing can be done, I am prescribing some pain killers, take care at home. I had dissatisfaction then. Sometimes I used to feel frustrated. There was no place where I can send them. There was no home care program available. When this hospice, Shanti Avedhna Ashram came, this was the first movement towards palliative care in Delhi. I got an opportunity to look at this side of cancer and to know there is an opportunity and a scope that we can do something for these patients who are living human beings. As a medical man I feel helpless I cannot cure them, I cannot treat them so that is how my interest in palliative care came.
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TELLING PATIENTS IN HOSPICE, THERES NO PROBLEM, EVERYTHINGS OKAY DOESNT WORKWe know that the patient is dying; the relative knows that the patient is incurable. But still we can give them hope; hope not cure, not for prolongation of life, but hope for better living, for quality of life till death. I have also learnt a lot in the last six years, much more than probably in the last 21 years of my medical life. The hospice teaches you how to deal with this end stage disease. Because we are all in the habit of talking to patients, everything will be all right, I will operate on you, theres no problem, everythings okay. But in the hospice it doesnt work. We know that the patient is dying; the relative knows that the patient is incurable. But still we give them hope; hope not cure, not for prolongation of life, but hope for better living, for quality of life till death. CARING FOR THE DYINGIf you start feeling you wont be able to work. It is very satisfying to give relief from pain and suffering even though there is no cure. As I told you earlier, it gives me pleasure that I can do something which I could not do sitting in a so-called active cancer care hospital. There I used to turn these patients out. I used to call the relatives and say the disease is too advanced, nothing can be done, I am prescribing some pain killers, take care at home. I had dissatisfaction then. When I started my cancer career in 1983 I asked one of my first teachers that the majority of the patients are dying in front of you, how do you feel. He said to me, If you start feeling you wont be able to work. Our job is to treat them to the best of our capabilities and the rest leave to God. Personal feeling should not overcome us in our professional work. In cancer practice a stage comes when almost 75% of the patients need palliative care. And we are not able to do something for them always. If we can it is very satisfying to give relief from pain and suffering even though there is no cure. EMOTIONAL DISTRESS OF WORKING WITH LIVING WITH DYINGI do not get so distressed because I am not working as a full time palliative care person. As far as emotional distress is concerned probably I do not get so distressed because I am not working as a full time palliative care person. I find it very satisfying to work in palliative care. In cancer practice a stage comes when almost 75% of the patients need palliative care. And we are not able to do something for them always. BEING IN A RELATIONSHIP WITH THE DYINGSince we know that the patient is going to die we communicate with them in a very different way. Definitely the relationship with the patient and family is different, not a personal relationship but it is
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different to the relationships in the oncology ward. In an active care hospital the average stay of a patient is five days. Sometimes 48 hours sometimes 10 days. But average stay in my cancer unit is five days. And after that, two visits before the operation, maybe three four visits after the operation and that is all. And once the patient is okay he goes to a chemotherapist and radiotherapist and probably after six months once the treatment is over, they come for follow-up. So I dont sort of develop a personal attachment with the patient. In hospice setting, since we know that the patient is going to die, talking and communicating to the relatives is virtually on a different platform. So I wont call it a development of a personal relationship, but definitely a different relationship is established with the patient and the relatives and hospice is probably the only place where, even after the death of the patient, the relatives come back and many times ask what they can do. So we communicate with them in a very different way. Definitely the relationship with the patient and family is different, but I may not call it a personal relationship. I dont call them home or go to their homes, but it is different to the relationships in the oncology ward. In the Indian setting, patients in hospital or hospice look to a doctor as a doctor rather than as a social person. CANCER PATIENTS LIVING WITH DYING IN HOSPICE AVAILABILITY OF MORPHINEPatients can get it at home but it is very restrictively available They can get it (morphine) at home, but it is very restrictively available until now, though the government is getting liberal. The government has understood the need and importance of morphine. Of course now an alternative to morphine has become available, that is transdermal patches, and they are available on prescription of a qualified medical practitioner, over the counter. But of course they are narcotic drugs and certain restrictions have to continue- because of risk of misuse. These patches can also be misused. INDIAN PATIENTS ATTITUDESCURE OR CARE IN HOSPICE In India still the patients and the doctors are not frank enough to talk about death to the patient. Many times I have seen in the last 6 years that the patients do think that they can get cured at hospice. In India there is a difference in a guarded area. Abroad the practitioner directly talks to the patient and asks if he would like to go to hospice. They do understand the meaning of hospice. In India still the patients and the doctors are not frank enough to talk about death to the patient. Many times I have seen in the last 6 years that the patients do think that they can get cured at hospice. But at the same time my feeling is that the majority of them do understand that they are incurable and they are being taken care of.
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PATIENTS DENIAL AND HOPE In their heart of hearts majority of them know they are going to die, their disease is very aggressive and advanced. Denial may be more apparent but hope is always there. My feeling is that the majority of them do understand that they are incurable and they are being taken care of. Of course the relatives of each and every patient know that he is incurable and that they are in hospice basically for care. Denial may be more apparent. In their heart of hearts majority of them know they are going to die, their disease is very aggressive and advanced. Of course hope is always there, always there. UNTIL THEY DIE THEY TRY TO LIVE A BETTER LIFEI have found that in hospice they are trying to live a better life. They have better courage to live, but something somewhere happens and many times they deteriorate fast. Patients become distressed because of specific problems and cannot cope. In hospice I feel that they try to live a better life. I can give an example. Ashok was a patient. We celebrated Diwali. On that day he was dancing. That Diwali day he begged for my permission to go home. We were concerned because he had wounds on his face that made holes into his mouth. Infection and flies was a problem. Anyway he went home and his family rejected him and asked him to leave. He was devastated. He died 2 days later, within 48 hours. Ram Singh, another patient, was here for one and a half years. He came and went and came and went home. He was doing very well. Then on one trip home he found that his wife has found a new partner. It came to him as a big shock. At the time he was not very ill. However after coming from home that last time he died within a week. I have found that in hospice they are trying to live a better life. They have better courage to live, but something somewhere happens and many times they deteriorate fast. PATIENT SAYS,EVERYTHING IS TAKEN CARE OF, THERE IS NO MORE STRUGGLE. love and affection by the sisters, and us, the relatives, the other patients That is exactly what I am saying. Shailender had understood that death is nearby but somehow the love and affection by the sisters, and us, the relations, the other patientsyou see the atmosphere is slightly different in a hospice. They try to live a better life though death is near. That is my experience. PATIENTS HAVE THE SAME DISEASE THE SAME SORT OF PROBLEMS Sharing the same sort of grief, that they are seeing death in the near future. They get courage to accept the reality of life and death as a natural part of life. Yes, it helps patients and it helps relatives. They are sharing the same sort of grief, that they are seeing death in the near future and that is probably why, when the patient dies,
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the grief is not that much as you see in a regular hospital or in a home--because they have accepted death as a natural part of life. Somehow they have got the courage because they have probably seen other patients dying over there. So they get courage to accept the reality of life. They share and feel the grief but they dont cry that much. That is how I have seen it. YOU ARE IMPORTANT TO USThey are not just patients in a bed in a hospice. We have to deal with the patients as individuals and give them dignity and self-respect. They tell me who they are. They need self-respect. There is no doubt about it. That is the purpose of hospice we have to deal with the patients as individuals and give them dignity and self-respect. We have to create that feeling also, that yes you are important to us and to society. The hospice movement is bringing back the human perspective to dying that had been lost when people where dying on the pavements. We take care of the human being and we take care of the body. After death the body is cleaned and clothes are put on and we all pray together and then the family takes the body for cremation. PATIENTS RECEIVE SOCIAL SUPPORT FOR HOSPICE PATIENTSvolunteers keep them company Certainly, a lot of my volunteers come and sit with the patients. They keep them company. They celebrate birthdays, marriage anniversaries of dying patients. And not only that, the family also sees and learns how to deal with a patient. So they also learn from others how to relate to their dying family member. Secondly, a lot of people visit, they talk to them, nobody shouts at them, this emotionally improves their quality of life. And then from time to time we do functions to entertain them. So once we give them symptomatic relief, we take care to give social support, and we entertain them, they then feel they are part of day-to-day life. That improves their quality of life. PSYCHOLOGICAL DISTRESS IN HOSPICEAnxiety is there because of the sometimes-distressing physical symptoms. Depression in palliative care is not there to a great extent, particularly if their symptoms are well controlled. You see anxiety, depression and all these things, they occur in two stages of the cancer. First thing is the initial diagnosis. But most of the patients live maybe from 6 months to 10 years with cancer, so they have become a little used to having cancer in their lives. I have seen that anxiety is there because of the sometimes distressing physical symptoms. Depression in palliative care is not there to a great extent, particularly if their symptoms are well controlled. If they are feeling pain, if the wound smells, if they are not able to eat, yes then depressions do occur. But depression in my experience is not to such an extent that we all think it may be in palliative care setting.
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I remember there was a couple. Both husband and wife had cancer and both were in the hospice. They were really distressed. And the most unfortunate thing happened. The wife died earlier and then the husband died 5 days later. Patients sometimes are disturbed but it is not a very common happening that they talk to me about it. PATIENTS COPING WITH CHANGE FROM CURING TO CARING IN HOSPICE AND DEATH KNOWLEDGEApparently they cope well; at least I can say they are maintaining their composure very well. This is slightly difficult to answer. But apparently they cope well. The other thing unfortunately in hospice in India is that we are seeing more uneducated and poor people. Maybe if we had more educated, upper class and status people we might see more problems with coping and all these things. This is not a very apparent thing. I cannot say definitely how well they are coping but apparently majority of them are coping well. At least I can say they are maintaining their composure very well. COPING WITH PAIN AND SUFFERING FOR CANCER PATIENTS--the medicines are necessary and then only the symptoms can be relieved, the disease cannot be cured. The coping is also different because there (in hospital) the patient knows it is temporary and he will go home virtually cured of his disease, while in hospice even the patient understands that it is not going to be a curable disease, the medicines are necessary and then only the symptoms can be relieved, the disease cannot be cured PATIENTS IN PHYSICAL DISTRESS AND QUALITY OF LIFE--You see, if the patient is in serious pain, he will not be able to eat, he will not be able to do his daily activities, and psychologically he will be depressed. He may ask you for death. The moment you relieve the pain the appetite improves, the depression improves, and he can go to the toilet himself. So this symptomatic relief we give them, the medical aspect, automatically improves the quality of life. PATIENTS RECEIVE SOCIAL SUPPORT Secondly, a lot of people visit, they talk to them, nobody shouts at them, this emotionally improves their quality of life. And then from time to time we do functions to entertain them. So once we give them symptomatic relief, we take care to give social support, and we entertain them, they then feel they are part of day-to-day life. That improves their quality of life QUALITY OF LIFE OF PATIENTS IN PALLIATIVE CARE--once we give them symptomatic relief, we take care to give social support, and we entertain them, they then feel they are part of day-to-day life. That improves their quality of life. You see, if the patient is in serious pain, he will not be able to eat, he will not be able to do his daily activities, and psychologically he will be depressed. He may ask you for death.
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The moment you relieve the pain the appetite improves, the depression improves, and he can go to the toilet himself. So this symptomatic relief we give them, the medical aspect, automatically improves the quality of life. Secondly, a lot of people visit, they talk to them, nobody shouts at them, this emotionally improves their quality of life. And then from time to time we do functions to entertain them. So once we give them symptomatic relief, we take care to give social support, and we entertain them, they then feel they are part of day-today life. That improves their quality of life. HOSPICE IS A SOCIAL PLACE FOR PATIENTSThere are things happening around the patient to distract him from his problems. Privacy at hospice is more probably than in their home. It is also a social place and there are things happening around the patient to distract him from his problems. They look forward to visits of social workers. LONGER SURVIVING PATIENTS AND QUALITY OF LIFEThere are social problems for these patients. Some sort of rehabilitation is required for chronically sick but not very sick long-term patients. Some sort of rehabilitation program, for these patients who can get bored and need something to keep them occupied, and some sort of vocational program that they should be allowed to use their time. In fact these long term patientsthere are social problems. They become used to hospice. The family is not there and they are destitute or sometimes the family is not willing to take them homebecause of the small house, or because others are working, daughter-in-law problems. Whatever the reason, once the patient is in a hospice we are not in a situation to ask them to leave. We also want that these patients should go home for a week or two. But sometimes they dont want to go. But yes, they should be looked after so that they can use their timesit at the reception and attend the telephone calls. Some sort of rehabilitation is required for chronically sick but not very sick long-term patients. DIFFERENCES IN COPING WITH LIVING WITH DYING--The patient who only has pain, when this is relieved that patient can cope best. There is no specific answer to this question that one type of person can cope better than another. It depends. We are able to relieve the pain, which is the simplest thing to manage in palliative care. The infected wounds can only be cleaned. The wound is not going to heal. So the patient who only has pain, when this is relieved that patient can cope best. Rather than infected ulcerated wounds, pulmonary metastasis that can cause respiratory distress, coughs which are difficult to treat. FAMILY AND RELATIVES IN HOSPICEThe relatives always know that the patient is incurable. The family learns how to relate to the dying family member. They gain social support and share the same sort of grief that they are seeing death in the near future. After the death of a family member, the relatives come back and ask what they can do.
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The relatives always know that the patient is incurable The family also sees and learns how to relate to their dying family member. They gain social support. In hospice they are sharing the same sort of grief, that they are seeing death in the near future. That is probably why when the patient dies, the grief is not that much as you see in a regular hospital or in a home. They are able to accept death as a natural part of life. A different relationship is established with the patients and the relatives and hospice is probably the only place where, even after the death of a family member, the relatives come back and ask what they can do. THE HOSPICE TEAM RESPECT AND DIGNITY FOR THE LIVING WITH DYING--teach our volunteers and social workers also that we have to treat them as living human beings and respect them till death and after that the body needs respect too. I try to teach our volunteers and social workers also that we have to treat them as living human beings and respect them till death and after that the body needs respect too. Self-respect is very much there. FULL TIME PALLIATIVE CARE STAFF--all the time dealing with dying persons is stressful and disturbing at times. The people who work in full time palliative care do suffer emotional distress and sometimes need psychological help also, because all the time dealing with dying persons is stressful and disturbing at times. DIFFERENT ROLES OF THE MULTIDISCIPLINARY TEAMIn the Indian setting patients in hospital or hospice look to a doctor as a doctor rather than as a social person. Patients sometimes are disturbed but it is not a very common happening that they talk to me about it. In the Indian setting, patients in hospital or hospice look to a doctor as a doctor rather than as a social person. You are right--In the same way they look to the Sisters for medical care and the spiritual aspects and dont like to bother them with their problems. So I think they turn to the social workers and psychologists for these aspects of their disease. EVERYTHING WILL BE ALL RIGHT DOESNT WORK IN HOSPICE We know the patient is dying; the relatives know the patient is incurable. We can give hope, not for cure, not for prolongation of life, but hope for better living, for quality of life till death The hospice teaches you how to deal with this end stage disease. Because we are all in the habit of talking to patients, everything will be all right, I will operate on you, and theres no problem, everythings okay. But in the hospice it doesnt work.
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PERSONAL FEELING SHOULD NOT OVERCOME US IN OUR PROFESSIONAL WORKOur job is to treat them to the best of our capabilities and the rest leave to God. When I started my cancer career in 1983 I asked one of my first teachers that the majority of the patients are dying in front of you, how do you feel. He said to me, If you start feeling you wont be able to work. Our job is to treat them to the best of our capabilities and the rest leave to God. Personal feeling should not overcome us in our professional work.
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APPENDIX G
Summary of the Patterns and Themes of the Sample Interview
We give them hope; hope not for cure, not for prolongation of life, but hope for better living, for quality of life till death.
INPATIENT HOSPICE CARE IN INDIA
THE CANCER DISEASE IS TOO ADVANCED, NOTHING CAN BE DONE. TAKE CARE AT HOME. I got an opportunity to look at this side of cancer and to know there is an opportunity and a scope that we can do something for these patients who are living human beings. Sometimes they need in-house treatment, institutional treatment and there this hospice has been a great help. HOSPICE TEACHES HOW TO DEAL WITH THIS END STAGE DISEASE We know that the patient is dying; the relative knows that the patient is incurable. But still we give them hope; hope not cure, not for prolongation of life, but hope for better living, for quality of life till death. WORKING WITH PATIENTS IN A HOSPITAL AND IN A HOSPICE In hospice setting the whole emphasis is on comfort, on care, on symptom relief. The emphasis is not on prolongation of life ON PATIENTS ATTITUDE TO HOSPICE IN INDIA CURE OR CARE I have seen in the last six years that the patients do think that they can get cured at hospice. But at the same time my feeling is that the majority of them do understand that they are incurable and they are being taken care of. TALKING FRANKLY ABOUT DEATH
In India still the patients and the doctors are not frank enough to talk about death to the patient
THE HUMAN PERSPECTIVE OF LIVING WITH DYING IN HOSPICE That is the purpose of hospice we have to deal with the patients as individuals and give them dignity and self-respect PATIENTS PAIN AND SUFFERING IN HOSPICE In a hospice setting these are long-term problems until death. The moment we withdraw the treatment the pain will reappear. SYMPTOMATIC TREATMENT IN PALLIATIVE CARE The whole concept of palliative care is on symptomatic treatment so it has to be continued till death. PATIENTS PRIVACY IN HOSPICE Privacy at hospice is more probably than in their home. The thing is it is also a social place CONCEPT OF HOSPICE CARE QUALITY OF LIFE
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Physical, emotional and social quality of life till death. HOSPICE IS THE NEED OF THE DAY The hospice movement should be a combination of in-house and home care programs. And not only that it has to collaborate itself to an active care hospital too. Sometimes these patients may need short-term admission to a hospital and acute care has to be done. So this needs a combination of things, not only an institution hospice or a home care. Dr. Lals EXPERIENCE OF WORKING WITH LIVING WITH DYING BACKGROUND AND INTEREST IN PALLIATIVE CARE As a medical man I feel helpless I cannot cure them; I cannot treat them so that is how my interest in palliative care came. TELLING PATIENTS IN HOSPICE, THERES NO PROBLEM, EVERYTHINGS OKAY DOESNT WORK We know that the patient is dying; the relative knows that the patient is incurable. But still we can give them hope; hope not cure, not for prolongation of life, but hope for better living, for quality of life till death. YOU ARE IMPORTANT TO US They are not just patients in a bed in a hospice. We have to deal with the patients as individuals and give them dignity and self-respect. CARING FOR THE DYING If you start feeling you wont be able to work. It is very satisfying to give relief from pain and suffering even though there is no cure EMOTIONAL DISTRESS OF WORKING WITH LIVING WITH DYING I do not get so distressed because I am not working as a full time palliative care person BEING IN A RELATIONSHIP WITH THE DYING Since we know that the patient is going to die we communicate with them in a very different way. Definitely the relationship with the patient and family is different, not a personal relationship but it is different to the relationships in the oncology ward. THE HOSPICE TEAM RESPECT AND DIGNITY FOR THE LIVING WITH DYING Teach our volunteers and social workers also that we have to treat them as living human beings and respect them till death and after that the body needs respect too. FULL TIME PALLIATIVE CARE STAFF All the time dealing with dying persons is stressful and disturbing at times. DIFFERENT ROLES OF THE MULTIDISCIPLINARY TEAM In the Indian setting patients in hospital or hospice look to a doctor as a doctor rather than as a social person. EVERYTHING WILL BE ALL RIGHT DOESNT WORK IN HOSPICE We know the patient is dying; the relatives know the patient is incurable. We can give hope, not for cure, not for prolongation of life, but hope for better living, for quality of life till death.
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PERSONAL FEELING SHOULD NOT OVERCOME US IN OUR PROFESSIONAL WORK Our job is to treat them to the best of our capabilities and the rest leave to God. CANCER PATIENTS LIVING WITH DYING IN HOSPICE AVAILABILITY OF MORPHINE Patients can get it at home but it is very restrictively available INDIAN PATIENTS ATTITUDES: CURE OR CARE IN HOSPICE In India still the patients and the doctors are not frank enough to talk about death to the patient. Many times I have seen in the last six years that the patients do think that they can get cured at hospice. PATIENTS DENIAL AND HOPE In their heart of hearts majority of them know they are going to die, their disease is very aggressive and advanced. Denial may be more apparent but hope is always there. UNTIL THEY DIE THEY HAVE TO LIVE I have found that in hospice they are trying to live a better life. They have better courage to live, but something somewhere happens and many times they deteriorate fast. EVERYTHING IS TAKEN CARE OF, THERE IS NO MORE STRUGGLE Love and affection by the sisters, and us, the relations, the other patients EVERYONE IN HOSPICE HAS THE SAME DISEASE THE SAME SORT OF PROBLEMS Sharing the same sort of grief, that they are seeing death in the near future. They get courage to accept the reality of life and death as a natural part of life. ON SOCIAL SUPPORT FOR HOSPICE PATIENTS Volunteers keep them company WE GIVE THEM HOPE FOR QUALITY OF LIFE TILL DEATH Hospice teaches you how to deal with this end stage disease PSYCHOLOGICAL DISTRESS IN HOSPICE Anxiety is there because of the sometimes-distressing physical symptoms. Depression in palliative care is not there to a great extent, particularly if their symptoms are controlled. PATIENTS COPING WITH CHANGE FROM CURING TO CARING IN HOSPICE AND DEATH KNOWLEDGE Apparently they cope well; at least I can say they are maintaining their composure very well. COPING WITH PAIN AND SUFFERING FOR CANCER PATIENTS The medicines are necessary and then only the symptoms can be relieved, the disease cannot be cured QUALITY OF LIFE OF PATIENTS IN PALLIATIVE CARE Once we give them symptomatic relief, we take care to give social support, and we entertain them, they then feel they are part of day-to-day life. That improves their quality of life. HOSPICE IS A SOCIAL PLACE FOR PATIENTS There are things happening around the patient to distract him from his problems. LONGER SURVIVING PATIENTS AND QUALITY OF LIFE
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There are social problems for these patients. Some sort of rehabilitation is required for chronically sick but not very sick long-term patients. DIFFERENCES IN COPING WITH LIVING WITH DYING The patient who only has pain, when this is relieved that patient can cope best. FAMILY AND RELATIVES IN HOSPICE The relatives always know that the patient is incurable. The family learns how to relate to the dying family member. They gain social support and share the same sort of grief that they are seeing death in the near future. After the death of a family member, the relatives come back and ask what they can do.
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APPENDIX H
My Personal Journey as a Counselor for Hospice Patients (Excerpts from the Researchers Journal) I started training at the inpatient hospice facility in Delhi as a palliative care counsellor in 1997 as part of the practicum and have continued to work there on my visits to India. I cherish the experiences I have had and the work I have done. Family and friends in Delhi and Manila often say, "Isn't it depressing to work with people who know they are going to die?" "I must say that you are doing an admirable job, I could never do it, hats off to you." "What can you say to them to make them feel better?" "Are you crazy? You go out of your way to be in an atmosphere of sadness and pain and despair." I do not consider that I do anything admirable or sacrifice my time and peace of mind. Nor do I find the work depressing. It may tire me out, spending time as I do with many "clients" and often their families everyday, and sometimes I have felt drained of energy, but I am not sadistic or masochistic. The counselling is challenging because the patient is challenged. At this point I do not have the answers to these questions, which initially surprised me because they were never questions I asked myself. I think it is important to do some self-searching to understand my need, interest and enthusiasm to do this work and I am in the process. One important reason for the research that I am doing on the experience of living with dying for terminally ill patients stems from the realization that I did not accept my mothers terminal condition as she did not have cancer. Therefore I did not address her experience of living with dying. I was left with questions about how she had lived with the knowledge that she was dying and if her needs were met. As a result, for many years following her death I was tormented with my own reconstructions of the despair, fear, anxiety, depression, physical suffering, and misery that I perceived as my mothers experience of the nine months of critical illness and death. We lived only in hope and getting her well. We did not make the move to living with dying. We did not reminiscence, grieve together, I did not hear her because I didnt listen. We did not conclude the experience of our life together and neither did I learn of her views and understandings on the many issues and dramas of the life of a family or her own existence.
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Counseling Relationships The relationships I have formed at this hospice have enriched my life enormously. I have only had this sort of a bond with a few very close and long-time friends and I treasure those. Here at the hospice, it is so easy to become close. The relationship is authentic, with no hidden agenda. In the midst of their distress, and desperate efforts to cope with the changes that take place so drastically in their lives they reach out to just get it off their chests with someone who cares enough and will listen and not judge them. So often I have been faced with the knowledge that some of my patients have been "healthier" even in their suffering than I will ever be. Their resilience in the face of so much devastation has been awe-inspiring. The insights and wisdom gained from them, the love and affection and generosity I have received, have warmed the cockles of my heart. The counseling sessions have been intense, and focused and there is intimacy and trust. The topics range from the fears of the illness and pain, reminiscences of how life used to be and the longing to get back to how it was, family problems, death, grief and worry for the family, to an urgent need to understand--" why me, what did I do to deserve this?" A life review invariably takes place--a sharing of the good and the bad. We hold hands, cry together, and laugh a lot as I go on their journey with them. I did not do this with my mother because I was trying to be brave for her or preferred to deny the reality. I remember fondly the patients I counseled and who touched my life. Remedios, had no fear of dying but was so, so lonely. The death of her daughter had taken care of that. However, she realized that she had a problem, that there was dissonance in her family life, which left her feeling very lonely. It was through the counselling sessions and writing a journal of her thoughts and feelings that she gained perspectives of what was the actual problem and her role in perpetuating it. She went from anger, hate and finally to understanding and loving her family "My house is now a home." Shailender, the 18-year-old whose calm acceptance of the cancer, that took his mother and brother before him and would take him, made him a cheerful and pleasant companion to the staff, patients and me. Alone, penniless and homeless, the hospice became his new and last home. For one so young he had the wisdom of the ages. Hope never left him though and if he got better he knew what he had to do. Nearing the end of our therapeutic relationship he said, " I don't see any need to sit around and be upset. I want to tell everyone here that we should eat our fill happily and be cheerful. After all everything is taken care of and life is no more a struggle." Mr. Kewal Kishen Dutta got less than two months to come to terms with life and dying and suffered greatly both physically and psychologically. His refrain, "I cannot understand anything. What has happened?" changed to We all have to go sometime and I accept that."
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Mr. Mani, 73, and his family were in the hospice for three short days. He stayed at home as long as was possible. He participated in the chores of the household. He knew that when the family could not cope and he needed morphine he would come to the Ashram. He accepted the cards life dealt him peacefully and was ready to die. He had concluded his business here. With me he reviewed his life without emotion, and put it into perspective and he taught me many things. He was a deeply spiritual man, clear headed to the end. Kamala, whose family life had gone so very wrong, whose brain cancer had left her paralyzed, and who told her story with knowledge that she couldn't solve the multitude problems with her dysfunctional family so she let them go. Her spiritual quest was intense and stimulating. She shared her views on the soul and life after death. She survived a long time though she was helpless and bedridden. She was peaceful in the last days and was mourned by all at the Ashram. Santosh, was acutely aware of her terminal condition and in her forthright and rational way she would talk about it. But she did not dwell on it constantly, preferring to be focused on people around her. She was a source of great comfort to the womens group as she distracted them with singing or telling stories, and involved them in conversations which did not centre on their suffering or their fears. She openly admitted to being scared of death. It was only closer to death that she bravely recorded her life story, telling the secrets she had kept hidden. By now she had gauged that I would accept her unconditionally and without judgment. Louis was frustrated, frightened and despairing of his situation but he hid it behind belligerence and unpleasantness. He found courage in reading Shailenders journal and requested that I write down his life story. I want the Sisters to know and understand me. He disclosed many things about his life. In reviewing and understanding his experiences with me he gained new perspectives that transformed him in many ways. He was able to settle down in the hospice and became sociable and friendly. He was finally at peace. Consequences of Cancer When cancer strikes many things are affected. Life changes too drastically. There are too many adjustments to make and too many problems to cope with, and patients long for life as it was with all its problems and inadequacies. There is the appreciation of what one has always taken for granted and probably cribbed about--the house, too small too big, no money for all the nice things one wanted, the hassles of cooking and cleaning. However, each individual in the situation reacts differently. Santosh has a positive attitude to life and devotes herself to the community around her, helping people who are sad by keeping the mood upbeat. She has a special capacity to do this and is really happy for the company. Mr. Sharma, is more self involved with his problems and the compromises he has had to make and he alienates himself. Many perceive that they are here for a short time and that their families are making arrangements to take them home. Others expect to get well and make future plans. Louis had nowhere to go but that did not motivate him in the beginning to settle in the hospice. A month before Shailender came to live in the hospice where his
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mother had died, he had tried to starve to death. He moved from temple to temple sleeping on the ground. For him the hospice was a comfort from his unhappiness and gave him the home his father did not provide. He was happy and thankful to be there though he made plans for the future and was distressed about his unfinished business. Counseling The conversations that patients have with me are passionate and deep and usually in the context of the living until death and suffering, grief and fear and sorrow. There is not much room light conversations initially but as the relationship becomes more familiar the mood changes. I realize the need to consciously step back and renew myself. I also appreciate that I am happy with the work I do and have gained rich insights, and made friends. My perception of the living with dying period being one of despair and grief and waiting to die has changed substantially. Patients are actively involved cognitively, emotionally and socially in living and facing the difficult challenges. I know I touch the lives of these people, and they have touched mine. I have been enriched. I have made a difference by being there, listening, acknowledging, accepting and not judging. I am continuously amazed that patients share so much of their lives without being asked to. Sr. Felicitas question to me, How do you get the patients to tell you about themselves? still rings in my mind. They do share their stories with the volunteers who come in regularly. I also think that as the nuns run the hospice they do not want to tell them negative things about themselves for fear that they will not like them. However, most importantly the sister nurses are actively involved in constantly controlling pain and the other symptoms that recur. Patients depend on them gratefully for this and probably dont want to disturb them. After years of training and many experiences I have found that a positive, and friendly approach and an attitude of being happy to be there and sit at their bedsides goes a long way in allowing patients to talk. It is important to share the compassion I feel by often sitting quietly and holding hands with them. Patients have commented that they felt better for talking to a person who was not part of their family and that they found it so easy to talk to me. I do not introduce myself as a counselor to every patient as this concept is unknown to a lot of the patients. I told Louis at the first meeting though because I felt he wanted to be told honestly and he had a vague idea that I was not one of the volunteers. Although initially I may not get involved in their day-to-day lives, after patients have shared what they want to and the counseling relationship ends, I do become a part of their social lives. The Womens Group This group is a source of support and comfort to each other. They are all in the same boat, their lives disrupted, dependent on others, away from family and friends and with not much to do. Certain rules and equations have been established. More importantly, since it is
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a group of women living with advanced cancer, they share a common bond and a deeper understanding of each other. I would join the group for a short time whenever I was in the hospice. Initially because it was cold I would sit in the sun with them but besides pleasantries I would not interfere or participate unless they asked me something. I would sit slightly away from them. This was a cohesive group and I was different. Gradually I was accepted by them and included in their conversations and cheerfully welcomed to join them. All the women finally felt comfortable with me and asked me to meet them individually. Unlike the others, Louis for example, they had the group to sustain and support them and it was only in due course that they felt the need to talk to me individually about things other that those discussed with the group. From a superficial stance, or an aggressive one as in the case of Kanta, each slowly moved to a more intimate and trusting relationship. Kanta expressed her distrust. My encouragement to get her to start knitting again because of her interest and skill was construed as my wanting her to knit something for me. I learnt a lesson from this experience that a good and kind act can be misconstrued if one moves too fast in establishing a relationship. Developing friendship, sharing and caring must be paced according to each person. Santosh is an uncomplicated person and very friendly and warm. Thus she found it easy to communicate with me and let me into her life. A perceptible change in mood occurred when one day I became the focus of their attention. Santosh, Kiran, Kanta, RajRani, Lajjwati, Behnji and some new patients were sitting in the sun. I pulled up a chair in the informal circle and covered my head with the sari to protect it from the sun. Kiran commented on my covered head saying I look like a bride. Kanta asked me the price of the toe rings I was wearing, then said they were cheap but they dont get caught in the sari. Santosh liked my sandals and asked how much they were. Everyone is feeling well enough to look outside herself. But one gets the hint of what they are missing. Some dont have the clothes or jewellery to dress up. Then even if they did there is nowhere to go. I had the feeling of a sense of loss felt by the women in the group as they surveyed me and my apparent wellness and places to go and things to do. It was a poignant moment and I felt different and outside the groupmore so than before. Life Stories All the terminally ill patients I have met talk about their lives about relationships, their achievements and some narrate the story of their lives. The distressing issues are highlighted in this process, as is their search for meaning. They need someone to hear them and listen to them. Usually the women talk of their accomplishments, sacrifices in the home setting, the familys dependence on them, the problems with alcoholic husbands and their helplessness, financial constraints and the problems with that. Their story helps them to define themselves, gives them an identity, which has been lost with cancer, and with being a patient in a hospice. They experience a need to tell of whom they were before they became patients. Why? Is it to say, "I was okay? I worked hard; I looked after the family well, never thought of myself. Why then have I got this?
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Story telling is a good way to gauge a patients emotions about the reality they perceive. I have been reading Tuesdays with Morrie, who shares his story, his thoughts and wisdom even as his disease eats away at his body. Finding a meaningful life even as death is imminent, devoting oneself to the community and loving others or anything that gives purpose and meaning to life is important and imperative. These are the things that made him feel truly alive. Shailender and Louis did not have families that love them and come to look after them. Shailenders father left him in the hospice and never returned. Louis family relationships were messy and he had not informed anyone either of his disease or his location. Both wrote the stories of their lives and eagerly shared it so people will know them in this new environment. The stories were not pretty, in fact there was brutal honesty about their transgressions and this sharing was a courageous act. Deaths in the Hospice All the inpatients have to experience deaths of friends they have made in the hospice. Everyone in the hospice is dying and medicine cannot help him or her. And they all have cancer. People who die at home or in regular wards in the hospitable do not have constant reminders of their own fragility and death knowledge. How do the hospice inpatients cope with this? When Radha, a member of the group died, the women seemed to have withdrawn and enveloped themselves in their little cocoons, their cubicles. They were distressed and frightened. To speak of it would be to face their impending deaths. Santosh, normally so adjusted and cheerful looked pale and drained of energy. My heart is small, but I am frightened. I am sad when patients I have come to know pass away. It is the grief of losing someone you love. However there is a difference from the grief I felt at my mothers death. That was a loss tempered with angst at her suffering, and the newly gained knowledge that in hospice her physiological distress could have been contained and she would have been in a community of fellow sufferers and she could have shared her concerns and distresses with others. At the hospice the patients receive so much support, care and love and that makes them feel so good and cared for and peaceful. Their social interactions improve with support from the team and they are able to deal with their distresses. Thus when death approaches I get the feeling that it is all right and they are ready and it is time. Limitations in the Hospice According to the literature resident hospices try to create an environment that is different to a hospital. Because sophisticated medical monitoring and life support equipment is not necessary to palliative care, the association with the hospital milieu can be avoided to some extent, which is the case here. In some hospices abroad, patients can live in individual rooms, and kitchen facilities encourage family members to continue to prepare meals or snacks for the dying patient. Some hospices in other parts of India have recognized the need for distractions and meaningful activities and have set up a room where patients can
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be taught skills like paper flower making, painting etc and these items made by them are then sold. It is a group activity with a purpose. The Experience of Living With Dying The hospice has patients from all walks of life and from different socio-economic backgrounds. In the same way different religions are represented as well as cultures. I have observed some wonderful interactions, for example, between a rich man and his family who share a cubicle with a houseboy or a destitute. When religion is discussed among a group of patients, it is with an eye to learning and gaining insights into the spiritual aspects of life. Cultural differences did not isolate but instead gave food for conversations. In the counseling sessions the concerns and needs of patients are similar as is the process of dying although rituals may differ. Individual personality differences influence coping strategies and adjustment, as do individual experiences and distresses. Dare I say that the experience of the last stage of life is similar across different cultures and social communities, and is also a leveling experience across social classes?

The Phenomenon of Living With Dying: A Qualitative, Heuristic Study of The Hospice Team's Perspectives - Thesis by Malini Mundle

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The Phenomenon of Living With Dying: A Qualitative, Heuristic Study of The Hospice Team's Perspectives - Thesis by Malini Mundle

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THE PHENOMENON OF LIVING WITH DYING IN TERMINALLY ILL CANCER PATIENTS

COVER: STAINED GLASS ART BY THE AUTHOR

In Partial Fulfillment of the Requirements for the Degree Master of Arts

by Malini Mundle 2001

The thesis entitled:

________________________________ ALMA S. DE LA CRUZ, PhD Officer-in-Charge Department of Psychology

________________________________ MA. TERESA G. TUASON, PhD Adviser

_________________________________ JOSE M. CRUZ, SJ, PhD Dean School of Social Sciences

Comprehensive Examinations passed: 09 and 16 May, 1998

_________________________________ ISABEL E. MELGAR, PhD Member

__________________________________ DOMINIK GSS, PhD Member

_________________________________ PATRICIA C. DOMINGO, MA Member

___________________________________ MA. TERESA G. TUASON, PhD Adviser

____________________________________ JOSE M. CRUZ, SJ, PhD Dean School of Social Sciences

Grade: Very Good Date: 26 May 2001

vii 136 140 142 145

SUMMARY AND CONCLUSIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Figure 1. 2. 3. The living-dying interval (Pattison, 1977) . . . . . . . . . . . . . . . . . . . . . . . . . . .

x ABOUT THE AUTHOR

Year: Degree conferred:

Purpose of the Study

Background of the Study

History of Cancer and Psychology

History of Hospice and Palliative Care

The Modern Hospice Movement

Hospice in the Asian ContextIndia

Review of Related Literature

Living With Dying

Crisis knowledge of death

Potential death trajectory

Actual death trajectory

Figure 1. The living-dying interval.

Acute Crisis Phase

Chronic Living-Dying Phase

Palliative Care--Human and Professional Tasks

Statement of the Problem

Significance of the Study

The Essence of the Phenomenon of Living With Dying

* Managing Psychosocial Distresses * Making Each Day Count

*Acknowledging the Horse on the Dining Table

Acute Crisis Phase

Chronic Living-Dying Phase

An Exposition of the Quality of Life Themes

Interpretative Synthesis of the Phenomenon of Living With Dying

Quality of Life Themes

Implications of the Research

Limitations of the Research

SUMMARY AND CONCLUSIONS

The Interview Guide

Summary of the Patterns and Themes of the Sample Interview

INPATIENT HOSPICE CARE IN INDIA

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