OVERVIEW OF END-OF-LIFE ISSUES FOR THE MENTAL

HEALTH PROVIDER

Read the following vignette about the historical and philosophical roots of current approaches to
hospice and palliative care from the view of the founder of the hospice movement, Dr. Cicely Saunders.

Dame Cicely Saunders, founder of the modern hospice movement, talks about her career and about how the
Hospice movement began.

She tells of her nursing experience with David Tasma, who was dying at age 40, leaving no family or friends
behind, and fearing he would not be remembered after death. Realizing how much pain relief, and her care,
had allowed him to sort out these and other issues, he left Dame Saunders a financial gift which she considers
the founding gift to the home hospice movement.

As a nurse and medical social worker after World War II Dame Saunders noticed that, rather than treating pain
as an intermittent “critical event,” regular and balanced dosing of oral morphine to dying patients worked
extremely well in symptom management. However, at that time two obstacles prevented the practice of
scheduled dosing of pain medication – the mistaken fear that the patient would develop a drug dependency
and the mistaken belief that the patient would develop a drug tolerance. She says that these obstacles linger
today, partly because physicians are trained to deal with acute pain, rather than terminal, chronic pain. Dame
Saunders’ understanding of pain and its all-compassing impact on patients led to the coining of the term “total
pain” - physical, psychological, social, and spiritual-in the 1960s.

She indicates that people fear isolation most – becoming, or being perceived as, less than a person. She also
says that people fear dependence, not being in control of what is happening so palliative care aims to help
people maintain control by dealing with their pain and other symptoms, which provides people with freedom to
focus on other things.

In fact, she discovered that this freedom frequently leads patients on a spiritual quest, something much larger
than a religious outlook, she says. It allows patients to explore who they are, search for meaning, and come to
terms with their lives.

Dame Saunders was an early advocate for interdisciplinary team work and emphasized that by working
together the team can attend to not only the patient but the family as well. She reminds providers to work with
the whole family, including children, during the patient’s dying process. Finally, for anyone going into medicine,
Dame Saunders urges care providers to, “Listen to your patients…they will tell you who they are, what they
need, and what they can achieve. “

Used with permission from the © EPEC Project, The Robert Wood Johnson Foundation, 1999.
Please answer the following questions (space is provided for you to write your response):

As a mental health provider, what do you think are the most important contributions you can make to
clients or patients who are dying?

Commentary by Dr. Donna Kwilosz about the value of “presence.”

Dr. Kwilosz believes “being there” for a person near end of life is one of the most important things a mental
health care provider can do. People at this stage of life many times feel they are no longer who they once
were during their lives and relatives are usually caught up in their own emotions concerning the impending
loss. Someone who can offer that “presence,” bear witness to their lives, and affirm that they were valued is
of great importance.
 This module provides an overview of the end-of-life care in the United States and the unique roles, tasks,
and challenges for mental health care providers working in this area of practice. Upon completion of this
module, you will be able to

1. define key concepts related to end-of-life care;

2. describe hospice and palliative care and how both are typically delivered in the United States;
3. understand the historical, cultural, and contextual issues that affect end-of-life care in the United States;
4. understand your own feelings and attitudes about death, dying, and end-of-life care; and
5. list the major ways in which mental health providers can assist patients and their families near the end
of life.

I. Key Concepts Related to End-of Life Care

There are several key concepts used commonly in discussions about dying and death. These concepts
are constantly changing in response to changes in social mores, technology, and options for dying. They are
typically loaded with moral meanings and marked by disagreements because they are shaped by people's
personal experiences, spiritual beliefs, and cultural backgrounds. In general, the "language of dying" is often
unclear, inconsistent, and emotionally charged. The following definitions are offered to clarify what is meant
when these terms are used in this module as well as all other modules in this series.

Good and Bad Death

According to the Institute of Medicine report (Field & Cassel, 1997) on improving care at the end of life,

A good death is
1. free from avoidable distress and suffering for patients, families, and caregivers;
2. in general accord with patients' and families' wishes; and
3. reasonably consistent with clinical, cultural, and ethical standards.

A bad death is
1. characterized by needless suffering;
2. dishonoring of patient or family wishes or values;
3. a sense among participants or observers that norms of decency have been offended; and
4. one that results from or is accompanied by neglect, violence, or unwanted and senseless
medical treatments.

Some argue that a good death also enables dignity to be preserved, it comes with reasonable warning,
it occurs in the company of loved ones, and it provides the opportunity for people to reconcile with significant
others and achieve a kind of meaning, peace, or transcendence (e.g., Byock, 1997). Although this more
expansive notion of a good death is intended to promote an empowering view of how life can be lived fully in
the face of death, it also has the potential for unwittingly romanticizing death and creating unachievable
expectations. Feelings of guilt, anger, and betrayal can arise when affronts to dignity cannot always be
prevented (e.g., pain, incontinence, vomiting, dyspnea), when interpersonal conflicts are not resolved, and
when spiritual serenity is not achieved.
Steinhauser and her colleagues (2000) took an empirical approach to understanding the notion of a
good death. They asked seriously ill patients, recently bereaved family members, physicians, and other care
providers (e.g., nurses, social workers, chaplains, and hospice volunteers) what they considered important at
the end of life. Items that were consistently rated as important across all four groups included effective pain
and symptom management, preparation for death, achieving a sense of completion, having treatment
preferences respected and carried out, and being treated as a “whole person” by care providers. Items that
were rated as very important to patients but significantly less important to physicians included being mentally
aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with
God. Items for which there was broad variation within and across groups included decisions about life-
sustaining treatments, dying at home, and talking about the meaning of death. The results of the study suggest
two general conclusions. First, physicians tend to focus on physical aspects of care whereas patients and
families tend to view the end of life with broader psychosocial and spiritual meanings. Second, there is no one
definition of a good death, and, thus, quality care at the end of life must be achieved through a process of
shared decision making and clear communication that acknowledges the values and preferences of patients
and their families.

Pain, Symptoms, and Suffering

A multidimensional concept of pain includes not only the physical and emotional experience (e.g.,
aching, burning, numbness, tightness, anxiety, fear) but also the various ways in which this unpleasant
experience affects the functioning of personality, cognition, behavior, and social relations (Stiefel, 1993). Pain
is only one of many symptoms that beset patients with terminal illnesses. Weakness and fatigue, nausea and
vomiting, constipation and diarrhea, nutrition and hydration problems, delirium and depression are also
common. In the past two decades, the knowledge and science behind the management of these symptoms
has grown substantially (e.g., Lipman, Jackson & Tyler, 2000). Providing relief from all of these symptoms is
the primary goal of hospice and palliative care.
Suffering is a more expansive concept than pain or the many symptoms listed above. It goes beyond
distressing symptoms to encompass other sources of anguish, such as loss of meaning or dignity, lack of
control, and changes in self-image or identity. Ultimately, suffering is a personal matter that is difficult to
measure, and it must be understood through the eyes of both the patient and her or his significant others. It is
important to note that suffering has a prominent and revered position in many religions and philosophies.
Because of that position, some people may reject efforts to alleviate symptoms that contribute to suffering.
Those caring for suffering patients near the end of life have the responsibility to explain that most sources of
distress can be relieved, but they also have a responsibility to understand and respect the cultural and religious
framework from which a patient or family engages their end-of-life experience.

Dying and End of Life

According to the Institute of Medicine report (Field & Cassel, 1997) on improving care at the end of life,
those referred to as dying

are often thought to be likely to die within a few days to several months but that those described as
having an incurable, terminal, or fatal illness also include people with advanced progressive illnesses
whose deaths are less predictable and might not come for years. (p. 27)

Although this module, as well as all the modules in this series, focuses primarily on those expected to
die within days or months, most of what is covered applies to all those with life-threatening or life-limiting
illnesses. The same is true for the term “end-of-life,” which in the context of this module refers to the period of
time in which someone is considered to be dying as defined above.

Other Important Terms

The following definitions are taken from a report by the American Psychological Association (APA)
Working Group on Assisted Suicide and End-of-Life Decisions (2000; click here
http://www.apa.org/pi/aseolf.html to go to the full report).

Advance care directives (or simply advance directives) are written documents meant to make
explicit the conditions under which individuals expect to wish to receive certain treatment or to refuse or
discontinue life-sustaining treatment in the event that they are no longer legally competent to make their
own decisions.
 A durable power of attorney (sometimes referred to as a health care proxy) is a form of
advance directive that designates an individual who can make decisions if the dying person is no longer
competent to do so.

A living will is a form of advance directive that specifies in writing what kinds of treatment are
and are not wanted.

Assisted suicide refers to the situation in which persons request the help of others, in the form
of access to information or means, the means, or actual assistance, in order to end their own lives. It is
important to note that the term “suicide” implies psychiatric illness or other emotional distress that
impairs judgment and decision-making capacity, and thus may not be an accurate or appropriate term
for a terminally ill, mentally competent individual choosing to control the time and manner of his or her
death. Many professional organizations now support value-neutral terminology such as aid-in-dying,
patient-directed dying, physician aid-in-dying, physician-assisted dying, or a terminally ill individual’s
choice to bring about a peaceful and dignified death.

Euthanasia generally refers to situations in which someone intentionally takes a person's life
with stated intent to alleviate or prevent perceived suffering (American Association of Suicidology,
1996). There are several different types of euthanasia, but this will not be a central part of the module
so they will not be discussed here.

Hastened death is an inconsistently defined term meaning to end one's life earlier than would
have happened without intervention. Some use it to refer to assisted suicide and euthanasia only.
Others, however, include in this category withholding and withdrawing treatment, death caused by
aggressive pain management, and voluntary cessation of eating and drinking. For the purposes of this
module, the meaning will be this latter, broader definition.

Differences in the use of the term “hastened death” represent different views about what types
of interventions are permissible under what circumstances as well as different views about the potential
for abuse associated with different end-of-life interventions. Some would argue that withdrawing life-
sustaining treatment can be placed on the same continuum as assisted suicide because they both
speed up the dying process. Others would argue that to place such terms under the single rubric of
hastening death creates an unacceptable perception of permissibility for certain interventions, like
assisted suicide, that should never be allowed. In this view, assisted suicide is sharply distinguished
from "letting the person die" as a result of the underlying disease process by, for example, withholding
or withdrawing treatment.

Withholding or withdrawing life-sustaining treatment is an ethically and legally accepted

decision that may be specified in advance care directives. It permits patients to forego or terminate life-
sustaining equipment such as ventilators, dialysis machines, feeding tubes for artificial nutrition and
intravenous fluids for hydration, and the sophisticated technology of the intensive care unit. In addition,
it allows for aggressive treatments to be foregone or terminated (e.g., chemotherapy or radiation
therapy except for comfort care, antibiotics, certain anti-seizure medications, or anti-inflammatory
agents that control brain swelling).

II. Hospice and Palliative Care

Effective end-of-life care includes both palliative and hospice care and should include attention not only
to the terminally ill patient but also to the family. The term “palliative care” is a broad concept, because it
includes the management of the physical, psychological, social, spiritual, and existential needs of individuals
with advanced disease and their family caregivers without reference to a specified life expectancy of the
patient. Palliative care is focused on treatment of conditions that are life limiting or refractory to disease-
modifying treatment. The term “hospice care” usually refers to a special type of comprehensive palliative care
provided during the last six months of life and is often linked to the specific programs offered under the
Medicare hospice benefit. Both palliative care and hospice emphasize the importance of addressing the needs
of both patients and their families (National Hospice Organization, Standards and Accreditation Committee,
1997; Task Force on Palliative Care, 1998). Conditions for which hospice and palliative care are appropriate
include cancer, AIDS, congestive heart failure, chronic obstructive pulmonary disease, end-stage organ
disease, and dementia and other progressive neurological diseases.

The goal of both hospice and palliative care is to achieve the best possible quality of life for patients
and their families. This goal is achieved through relief of suffering, pain and symptom management,
psychosocial support, optimization of functional capacity, and respect for autonomy and the appropriate role of
family and legal surrogates. Although palliative care does not require the exclusion of all aggressive or curative
therapies, hospice patients typically must agree to forego aggressive or curative treatments (though some
interventions may be performed to maximize quality of life, such as blood transfusions to maintain energy level
in leukemia patients). Specific goals of hospice include self-determined life closure, safe and comfortable
dying, and effective grieving (National Hospice Organization Standards and Accreditation Committee, 1997).
A palliative care consultation team ideally is interdisciplinary and is composed of professionals with
advanced competencies in hospice and palliative care, as promulgated in the Clinical Guidelines from the
National Consensus Project for Quality Palliative Care ([NCP], (2004).

Palliative care presupposes indications for, and provision of, interdisciplinary team evaluation and
treatment in selected cases. The palliative care team must be skilled in care of the patient population to
be served. Palliative care teams may be expanded to include a range of professionals, based on the
 services needed. They include a core group of professionals from medicine, nursing, and social work
and may include some combination of volunteer coordinators, bereavement coordinators, chaplains,
psychologists, pharmacists, nursing assistants and home attendants, dietitians, physical-, occupational-
, art-, play-, music-, and child-life therapists, case managers and trained volunteers. (NCP, 2004, p. 6)

(See this site www.nationalconsensusproject.org for the complete NCP guidelines.)

Palliative care teams typically offer consultation throughout a medical center facility, assisting the
primary care team with planning and guidance on pain and symptom management and other care issues, such
as advance care planning and withdrawal of treatment. Palliative care teams also offer emotional and spiritual
support and facilitate communication among and between patients, family members, and care providers.
Palliative care teams, in comparison to conventional care staff, have been associated with small but positive
effects, particularly with pain control and symptom management (Higginson et al., 2003), patient satisfaction,
and reduced cost through reduction of inpatient stays (Back, Li, & Sales, 2005; Hearn & Higginson, 1998).
Research conducted in hospitals and nursing homes has repeatedly shown that families tend to receive little
organized support and services when death occurs in hospitals or nursing homes without the inclusion of
palliative or hospice care.
Hospice programs in the United States began in the 1970s, and the introduction of the Medicare
hospice benefit in 1982 led to a dramatic growth of hospice care (Miller, Mor, Gage, & Coppola, 2000). Nearly
360,000 Medicare patients used hospice services in 1998, about 20% of all Medicare beneficiaries who died in
that year (U.S. General Accounting Office [GAO], 2000), with recent figures showing that 950,000 patients
were served by hospice in 2003 (National Hospice and Palliative Care Organization [NHPCO, 2005). Patients
are eligible for the Medicare hospice benefit if they are certified by a physician as having less than six months
of life expectancy. Contrary to common misconceptions, there are no regulations requiring hospices to cease
care or refund payments received if patients survive more than six months; in fact, only about 7% of patients
remain in hospice care beyond 6 months, a figure that has remained fairly stable over time (GAO, 2000;
NHPCO, 2005). As long as the hospice provides appropriate documentation of patients’ prognoses, the
patients can be re-certified for longer stays in hospice. Although hospice programs initially focused on cancer
patients and their families, there is an increasing trend for noncancer patients and their families to receive
hospice care. The percentage of noncancer patients in hospice rose from 24.4% in 1992 to 42.6% in 1998
(GAO, 2000), and increased further to 51% in 2003 (NHPCO, 2005).
Hospice in the United States was designed to deliver care in the home and to allow patients to die in
their homes. Residential hospices account for very few beds, but hospice is increasingly serving patients in
nursing homes. It is estimated that 24% of Medicare hospice beneficiaries receive these services in nursing
homes (Miller, Gozalo, & Mor, 2000). Miller, Gozalo, and Mor (2001) found evidence that Medicare hospice
patients residing in nursing homes had lower rates of hospitalization than nursing home residents not receiving
hospice care. Interestingly, there was also evidence that the presence of hospice care in nursing homes leads
to lower rates of hospitalization even for non-hospice patients. It appears that the presence of hospice leads to
beneficial spillover effects that affect patients not even enrolled in hospice; perhaps this effect is a result of the
increased knowledge nursing home staff gain from the presence of hospice personnel. Providing hospice in
nursing homes not only reduces hospitalization, but also improves pain control and reduces tube feeding
(Zearson, Sterns, & Hanson, 2000).
Hospice under Medicare covers prescription drugs, oxygen, aides, volunteer and respite companions,
spiritual counseling, advance planning, and support and bereavement resources for family. Although it
represents a significant advance, hospice faces some serious problems, one of which is the extremely short
stays. In 2003, 36.9% of patients admitted to hospice died within 7 days of admission (NHPCO, 2005), an
increase from the 1998 figure of 28% of patients dying within a week of hospice admission (GAO, 2000). The
median length of stay in hospice has declined from 29 days in 1995 to 22 days in 2003 (NHPCO, 2005). It is
likely that multiple factors contribute to these decreasing lengths of stay.
Among the causes of the short lengths of stay are patient, family, and physician efforts to continue
aggressive medical treatment until illness is quite advanced; conceptions that hospice involves “giving up”; and
unrealistic fears about financial consequences of referring patients who survive longer than six months.
Physicians, who have a critical role in referring patients to hospice, greatly overestimate life expectancy in
terminally ill patients (Glare et al., 2003). The decreasing lengths of stay in hospice create a number of
problems. Patients and families receive relatively short periods of service. Hospices have high “front-end”
expenses, and it is very costly to admit large numbers of patients who are seen for brief periods of time when
reimbursement is on a per diem basis. Hospices are expected to provide a year of bereavement care for
families even when the number of paid days of service is small. What this means is that many hospices can be
overwhelmed with large numbers of bereaved former caregivers, some of whom were seen for only brief
periods of time in the hospice program. It also means that the hospices will have received very little
reimbursement for these short stay cases. Thus, bereavement programs are at risk of being underfunded and
understaffed by hospices.
Studies examining the impact of hospice care (which includes attention to family caregivers) on
caregivers suggest that hospice is consistently related to higher caregiver satisfaction with end-of-life care.
Some studies also suggest lower anxiety during the time of caregiving and lower depression during
bereavement when families receive hospice care (Miller et al., 2000). Christakis and Iwashyna (2003) found
evidence that family caregivers of patients cared for in hospice had lower mortality rates during bereavement
than matched control spouses who had been widowed without the benefit of hospice care. Thus, there are
many benefits both for patients and family caregivers if they use hospice and palliative care services.

III. Contextual Issues Related to End-of-Life Care

Historical Changes
In 1900, the average lifespan was 47.3 years; by 1997 it had increased to 76.5 years, a gain of 29.2
years in less than a century (Kramarow, Lentzner, Rooks, Weeks, & Saydah, 1999). Age-adjusted death rates
for the year 2000 were the lowest in U. S. history and are part of a continuing historical trend for increasing life
expectancy. Assuming continued increases in longevity, the proportion of those who die past age 75 will also
increase (Field & Cassel, 1997). Currently, fewer than 3% of deaths occur in people under age 25, and 75% of
deaths occur in persons over age 65, with those over 85 accounting for 27% of deaths (Minino & Smith, 2001).
The age distribution of the population in the United States has changed substantially in this century.
The number of persons under age 65 has tripled in this period of time while the number of persons 65 or over
has jumped by a factor of 11 (Bureau of the Census, 1996). It is particularly noteworthy that the rate of aging of
the population is expected to accelerate for the next half century. In 1994, one in every eight persons in the
United States was over 65. By the year 2050, the older adult population is expected to more than double,
resulting in a ratio of one older adult to five younger persons. The “old-old," those 85 and over, are the most
rapidly growing sector of the aged. By the year 2050, people over 85 are expected to make up 24% of older
persons and 5% of the entire population in the United States.
The causes of death have also changed dramatically. In 1900, the 10 leading causes of death were
pneumonia, tuberculosis, diarrhea and enteritis, heart disease, stroke, liver disease, injuries, cancer, senility,
and diphtheria (Centers for Disease Control and Prevention, 1999). Most people died from infectious illnesses
that caused death with certainty and relative rapidity. By 1998, the leading causes of death in the United
States—heart disease, cancer, stroke, and chronic obstructive pulmonary disease—are chronic diseases, and
account for about two-thirds of all deaths in the United States (Emanuel & Emanuel, 1998).
The location where death typically occurs has also changed, moving from the home to technologically
sophisticated and often impersonal settings. Most deaths in the United States occur in institutional settings,
including hospitals (44%) and nursing homes (25%) (Hogan, Lunney, Gabel, & Lynn, 2001). Only a minority of
people die in the care of formal hospice programs, and the majority of these hospice deaths involve cancer
diagnoses. This growth in institutionalized death has distanced many Americans from the experience of death,
and this lack of experience with death may make confronting end-of-life issues particularly difficult when crisis
situations arise.
As the dying process and death have moved from taking place at home to medical settings,
professionals have exerted more control over the timing of dying. Technology now permits life to be greatly
extended. It appears that in a growing number of terminal cases medical decisions are made to withhold or
withdraw treatment (Field & Cassel, 1997). In 1992, it was estimated that 70% of the 6,000 deaths that occur
daily in the United States are somehow timed or negotiated with family, doctors, and the dying person when
competent, quietly agreeing to not use death-delaying technology (In re L.W., 1992).

Disparities in Mortality Rates

 Multiple investigations have documented the consistent gap in all measures of mortality by race,
particularly between black and white Americans (Hahn & Eberhardt, 1995). Researchers have also drawn
attention to substantial disparities in mortality and functional health status nationally and within race groups in
relation to income, social class, education, and community characteristics (Wong, Shapiro, Boscardin & Ettner,
2002). Murray and his colleagues (2006) recently fine-tuned our understanding of disparities in mortality in the
United States by analyzing life expectancy in terms of the combination of race and county of residence
(referred to as ‘‘race-county’’). This race-county analysis resulted in eight distinct subgroups of life expectancy
referred to as the ‘‘eight Americas.’’The eight Americas were (a) Asians, scattered throughout the country; (b)
rural Whites in the Northern Plains and the Dakotas; (c) White Middle America; (d) low-income Whites in
Appalachia and the Mississippi Valley;(e) Western Indians (the smallest group, with 1 million people); (f) Black
Middle America; (g) low-income rural Southern Blacks; and (h) high-risk urban Blacks—those living in places
where a person has a 1% or greater risk of being killed between 15 and 74 years of age.
The Murray et al. (2006) study reveals a United States that is pocked by places where millions of adults
face a risk of premature death like that in parts of the developing world. Furthermore, those differences
mortality disparities of adults have not changed in two decades. The life expectancy gap between the 3.4
million high-risk urban black males and the 5.6 million Asian females was 20.7 years in 2001. Within the sexes,
the life expectancy gap between the best-off and the worst-off groups was 15.4 years for males (Asians versus
high-risk urban blacks) and 12.8 years for females (Asians versus low-income southern rural blacks). Mortality
disparities among the eight Americas were largest for young (15–44 y) and middle-aged (45–59 y) adults,
especially for men. The disparities were caused primarily by a number of chronic diseases and injuries with
well-established risk factors.

Variability in the Quality of End-of-Life Care

Inequalities in insurance coverage, health care access and utilization, and quality of care have been
widely reported (Smedley, Stith & Nelson, 2003). The implications of these disparities for end-of-life care are
summarized in the following paragraph excerpted with permission from the Report to the Board of Directors
from the American Psychological Association (APA) Working Group on Assisted Suicide and End-of-Life
Decisions (APA Working Group, 2000, Section 1) (See this site http://www.apa.org/pi/aseol/introduction.html):

Although the medical system in the United States offers excellent care choices, the options are
largely available only for those who have money or are insured. Individuals who do not have access
to private health care insurance often suffer from insufficient and/or poor quality care. Most of the
uninsured are older women, children, and ethnic minorities. Access to life-extending medical
technology is similarly a function of resources. Higher income individuals are more likely to have a
private attending physician, which is related to maintenance of life-sustaining care (Mishara, 1999).
As noted by Field and Cassel (1997), “people may have the theoretical right to make their own
medical choices, but many do not have the financial access to minimal care necessary for
implementation of those choices” (p. 48). It should be noted that concerns about costs also influence
the preferences of individuals and family members about life-extending measures (Covinsky et al.,
1996).

“Even when dying people have access to medical care, the quality of care is highly variable and can
be less than desirable. The Study to Understand Prognoses and Preferences for Outcomes and
Risks of Treatment (SUPPORT Principal Investigators, 1995), conducted from 1989 to 1994, is the
most massive research effort to date associated with the process of dying in America. The study
tracked some nine thousand people with various serious and terminal illnesses during the final stages
of their life. It also included a large slice of the medical establishment, involving interviews with some
1,600 physicians, 500 nurses, and many other health care professionals at numerous prestigious
medical institutions. In Phase I of the study, researchers examined how people were treated when
they entered the hospital, how medical decisions were made, and what happened to them and their
families during the acute treatment period and for six months afterward. Findings from the study were
quite dramatic:

• Half of the people who were still conscious had moderate to severe pain at least half of the time
 before they died.
• More than half of the doctors in the study did not know about their patients’ preferences for life-
sustaining treatment.
• Nearly 40% of the individuals spent at least 10 days in an intensive care unit.

In Phase II of the study, a number of interventions were put in place that a large
panel of experts on end-of-life medicine and law thought would change treatment patterns and make
the process of dying more comfortable. In the end, those patients who received the interventions
were treated the same as those patients for whom no such efforts were made.” (See this site -
Section 1,http://www.apa.org/pi/aseol/introduction.html)

Other Diversity Issues Related to End-of-Life Care

The following text is excerpted with permission from the Report to the Board of Directors from the
American Psychological Association (APA) Working Group on Assisted Suicide and End-of-Life Decisions
(APA Working Group, 2000):

In the United States, the dominant discourse about illness, dying and death focuses on
autonomy, independence, self-control, and individual choice. The health care system reinforces this
individualistic focus through the legal structures of advance directives and informed consent. This
focus on the individual and on planning for death presupposes a particular situation and assumptive
world that include the following elements:

• the individual is the primary decision-maker;

• the individual has an interest in being in charge;
• there is a clear communication and understanding between the individual and the medical team
about diagnosis, prognosis, and options;
• the individual has equal financial access to the different options offered;
• the individual has the power and sense of entitlement to make whatever choice is desired;
• the individual is competent to make choices;
• the individual values discussing and planning for death;
• the individual has a spiritual orientation that does not emphasize divine interventions, and allows
for choice in time and manner of death (Koenig, 1997).

There are many people in the United States for whom at least some of these conditions do not
pertain. The model above is particularly inadequate to account for the experiences and values of
persons who are in one way or another culturally different or socially disadvantaged. This includes
ethnic and religious minorities for whom individual decision-making is not a priority. Persons who are
economically disadvantaged also do not fit the conditions of an end-of-life model that assumes equal
access to different options. The same may be true of persons with disability. In fact, a social or
minority model for conceptualizing disability may be more suitable than the medical model because
many of the barriers that confront disabled people are of social origin, involving widespread
devaluation of this particular form of diversity.
Social and cultural groups vary with regard to beliefs and opinions regarding end-of-life
decision-making. This includes the appropriateness of talking about and planning for death, informing
persons that they are dying, and the roles of the individual, family members, and physicians regarding
end-of-life decisions. These groups also vary in even more basic dimensions (such as orientation to
the future, conceptions of the self and personhood, and beliefs about the rights of the individual) that
may have implications for end-of-life decision-making. In addition, individual differences within social
groups can be as great as, or greater than, differences between groups because individuals are often
exposed to multiple and sometimes contradictory systems of values. Similarly, individuals from the
same demographic group do not all think the same way. Another variable is that group experiences
and the system of values affecting attitudes and behavior are not fixed. Rather they are constantly
evolving within specific social and historical contexts. Finally, diversity factors do not apply to
 minorities only, and are relevant not only to individuals and their families, but also to professional care
providers (Koenig, 1997). Diversity considerations are therefore critical in developing a psychological
agenda for end-of-life issues, especially in a demographically diverse and socially stratified country
like the United States.
A diversity perspective shows that the ethical and practical questions that have dominated the
national debate on the end of life are not universal concerns. For example, persons of Chinese
descent may place a value on protecting the dying person from negative information (Hallenbeck,
Goldstein, & Mebane, 1996), and therefore may not discuss impending death with the dying person.
Similarly, family dynamics in recent immigrants from Mexico or Korea may tolerate less individual
autonomy than is permitted in families of European or African descent that have not recently
immigrated (Field & Cassel, 1997). In addition, in many cultural and religious traditions, there may be
an expectation that women rely on the authority and advice of male authorities (e.g., family members,
professionals, etc.) for decision-making. In some traditions, there may also be an expectation of
women’s self-sacrifice (Wolf, 1996). Further, planning about dying is contrary to traditional Navajo
values, particularly the value of “avoiding thinking or speaking in a negative way ('doo’ajíniidah')"
(Carrese & Rhodes, 1995, p. 828). In this tradition, discussion of negative information is harmful in
that it may bring about a feared negative outcome. Finally, among some ethnic minorities, longevity
may be an intrinsic good, independent of health status.
Studies have found that African Americans and Hispanics are more likely than European
Americans to express a preference for life-sustaining treatment, regardless of the state of the
disease, and independent of educational level (Caralis, Davis, Wright, & Marcial, 1993; Morrison,
Zayas, Mulvihill, Baskin, & Meier, 1998). These preferences may be related to negative experiences
with the medical system (including inadequate care, as well as difficulties in negotiating their needs),
leading to a lack of trust in professional advice (Hallenbeck et al., 1996; Koenig, 1997).
Further examples of diverse positions that are socially based include people in the disability
community, who express serious concern about sanctioning assisted suicide. A common attitude
among the non-disabled indicates that some would rather be dead than disabled, which, taken in the
context of medical-industry emphasis on cost savings, could lead to withholding critical services to
people with disabilities. Such concerns regarding the effects of devaluation and cost-saving strategies
are also highly relevant to other disenfranchised groups such as people suffering from alcohol and
drug abuse or dependence.
Issues of social, economic, and cultural diversity become even more critical in decisions that
may affect the timing of death. In the United States, no matter how carefully any safeguards are
framed, such decisions are practiced in a context of social inequality, bias, and unequal access to
services. In regard to assisted suicide and euthanasia, it has been argued that the persons who are
the most vulnerable to coercion or abuse are those “whose autonomy and well-being are already
compromised by poverty, lack of access to good medical care, or membership in a stigmatized social
group” (New York State Task Force on Life and the Law, 1994, pp. vii-viii). This argument has been
extended to include all types of end-of-life decisions (Canetto & Hollenshead, 1999; Orentlicher,
1997). Older persons, women, religious and ethnic minorities, sexual minorities, and persons with
disabilities who are seriously ill, may be particularly likely to be perceived as burdensome by the
medical system. Furthermore, they may also have a lower sense of entitlement to resources, and
may come to see themselves as appropriate candidates for an accelerated death. (See this site-
Section 2, http://www.apa.org/pi/aseol/introduction.html)

Additionally, there are considerable racial/ethnic differences in use of advance directives, the extent to
which families believe that patients should be informed about prognosis, preferences for family versus
individual decision making, and in patients’ wishes about withholding life-sustaining treatments (Kwak & Haley,
2005). For example, African American older adults are less likely than others to agree to withhold life-
sustaining treatment even when quality of life is poor, and cultural values among many Asian groups
discourage direct disclosure to dying patients and encourage decision making by family members (Kwak &
Haley, 2005).
 There has been relatively little attention to cultural diversity issues and bereavement after caregiving at
the end of life. Owen, Goode, and Haley (2001) found that white and African American caregivers differed in
their reactions to the death of a relative with Alzheimer’s disease. White caregivers were more likely than
African Americans to report a sense of relief, while African American caregivers were more likely than white
families to view this as a loss experience. African American caregivers were also less likely to report
anticipatory grieving.

Current Trends in End-of-Life Care

As stated above, those 85 and over are the most rapidly growing sector of the aged. Older adults,
particularly those in the “oldest old” group (85+) are particularly likely to face the end of life with conditions that
are relatively uncommon in younger persons. Allen, Haley, Small, and McMillan (2002) have reviewed some of
the special issues faced in end-of-life care for older adults with dementia. These include the long-term nature
of dementia symptoms; the poor fit between the six-month eligibility criterion for the Medicare hospice benefit
and the typical progression of dementia symptoms at the end of life; and the special care requirements for
persons with end-stage dementia. With advanced age, it is also much more likely that patients will present with
multiple chronic conditions, termed comorbidity. Care of patients with multiple chronic conditions has become a
special concern of geriatric medicine, and the relationship of geriatric medicine and palliative care is
increasingly discussed (Goldstein & Morrison, 2005).
Lunney, Lynn, and Hogan (2002) examined Medicare data and found that there were four common
trajectories at the end of life that accounted for nearly all deaths: sudden death (7%), terminal illness (22%),
organ failure (16%), and frailty (47%), with only 8% of deaths not fitting these categories.

See below for a graphic depiction of the four common trajectories at the end of life.
 Considered in the light of family caregiving issues, all of these trajectories have different implications.
The most common pattern, frailty, suggests a sustained period of caregiving in which death occurs after years
of severe impairment due to dementia, stroke, and multiple comorbid illnesses. The organ failure category
similarly implies serious long-term disability and caregiving, with relatively intense periods of exacerbation.
Deaths after congestive heart failure or chronic obstructive pulmonary disease are typical of this pattern. In
both of these patterns, family caregivers can experience long periods of caregiving responsibilities. Patients
categorized as having terminal illness experience a relatively brief but intense period of deterioration leading to
death, with a prototype being death after lung cancer. With this pattern, family members may face a relatively
short period of caregiving but experience very intense caregiving demands that require extensive effort over
this period of time. Only in the sudden death category is family caregiving not an important problem (although
bereavement issues still affect the family).
The end of life is also very expensive. Using the four categories of death described above, Lunney et
al. (2002) showed that Medicare expenditures during the final year of life varied from $625 per person for
individuals in the sudden death category to $36,834 for the organ failure group. The terminal group ($31,052)
and frail ($24,849) groups also had high expenses. Yang, Norton, and Stearns (2002) have demonstrated that
a great deal of the association between age and health care costs is actually related in large part to costs
during the final few months of life. It has also been found that the 5% of Medicare beneficiaries who die in a
given year account for over 25% of Medicare expenses (Lunney et al., 2002), highlighting the importance of
end of life care from a policy perspective.
Although most persons preferred to die at home and without excessive technological intervention,
preferences concerning life-sustaining treatments are usually not adequately discussed, documented, or
adhered to by health care providers (Larson & Tobin, 2000). It is estimated that 20–70% of dying patients
experience inadequate pain relief, that over 1/3 of dying patients are depressed, and 35% have unmet
emotional needs (Bradley, Fried, Kasl, & Idler, 2000). Little specialized attention is generally given to the dying
experience for patients and families in these hospital and nursing home settings.
A series of studies and reviews (Field & Cassel, 1997; Larson & Tobin, 2000; SUPPORT Principal
Investigators, 1995) provide chilling evidence of the shortcomings of our current system of care for dying
persons in hospitals. Americans too often die after prolonged hospitalization or intensive care, with inadequate
pain management and with excessive high-technology intervention in hospitals. There have also been serious
concerns raised about the quality of end-of-life care in nursing homes. Nursing home residents who do not
receive hospice care commonly receive poor pain and symptom management (Zearson, et al., 2000), and
factors such as inadequate numbers of staff, lack of privacy, and insufficient supervision and training of staff
exacerbate these problems (Kayser-Jones et al., 2003). In addition, it is common that few bereavement
services are offered to families after death in nursing homes (Murphy, Hanrahan, & Luchins, 1997) unless
hospice is involved in care.
There are some causes for optimism, however. There is a growing movement toward increased
hospice and palliative care programs in the United States, and a number of innovations in end-of-life care,
including palliative care centers of excellence, hospice consultation teams (Dunlop & Hockley, 1998), pre-
hospice and care management programs (Connor, 1999), advance directives efforts (Cugliari, Sobal, & Miller,
1999; Emanuel, 1995), and advanced illness coordinated care programs (Larson & Tobin, 2000). Hospice
care is also reaching increasing numbers of patients and families.

Take a moment to reconsider the vignette of Dame Cicely Saunders that you read previously. Dr.
Saunders discussed her early experiences with care for the dying and how those experiences shaped her
thinking about death and dying.

What were your early experiences with death and dying and how have those experiences shaped your
views about death and dying?
 How do you think your early experiences with death and dying might affect your work with patients and
their families near the end of life?

Our early experiences with death frequently serve as primary templates or lenses through which we
organize subsequent experiences with death and dying. Too often, our first encounters with death occur at
early stages of development without adequate support, discussion, or education. As a result, these early
experiences are often confusing, overwhelming or traumatic. Sometimes these early experiences can distort
our thinking and place us in vulnerable positions in which we are at risk for projecting our worries, fears, or
reactions onto those for whom we provide mental health services. For example, a young boy who witnessed a
dying aunt with emphysema struggling for breath and turning blue may as an adult mental health provider
assume a level of suffering at the end of life that is not at all generalizable. As mental health providers, it is
critical that we review our own early experiences with death and how those experiences shape our
expectations and reactions.

Dr. Saunders points out that many of the early problematic approaches to medical care for the dying
still exist today. If one of your patients or clients was suddenly diagnosed with a terminal illness and told that
she or he did not have long to live, how would you go about helping her or him find relevant resources and
high-quality care in your community?

See the following for a listing of practical end-of-life-related resources and tools for locating end-of-life care in
your community.
 End-of-Life Care Resources for Practitioners

National Organizations Involved With End-of-Life Care

• AARP
http://www.aarp.org/

• American Academy of Hospice and Palliative Medicine

http://www.aahpm.org/

• American Geriatrics Society

http://www.americangeriatrics.org/

• American Society on Aging

http://www.asaging.org/index.cfm

• Association of Death Education and Counseling

http://www.adec.org/

• Compassion in Dying Federation

http://www.compassionandchoices.org/cid/

• Gerontological Society of America

http://www.geron.org/

• Hospice and Palliative Nurses Association

http://www.hpna.org/

• Hospice Foundation of America

http://www.hospicefoundation.org/

• National Coalition on Mental Health and Aging

http://www.ncmha.org/

• National Council on Aging

http://www.ncoa.org/

• National Funeral Directors Association

http://www.nfda.org/

• National Hospice and Palliative Care Organization

http://www.nhpco.org/templates/1/homepage.cfm

• Promoting Excellence in End-of-Life Care

http://www.promotingexcellence.org/i4a/pages/index.cfm?pageid=1

• Robert Wood Johnson Foundation

http://www.rwjf.org/pr/topic.jsp?topicid=1194
Advance Directives

To download your state’s advance directives and for a state-specific living will or health care power
of attorney:
http://www.caringinfo.org

Assessment and Treatment of Pain

To search for a local pain management clinic (includes international and Canadian resources):
http://www.pain.com/

To access an online pain support group for patients and their families:
http://www.chronicpainsupport.org/

Cognitive Changes at the End of Life

Online handbook for lawyers on assessment of older adults with diminished capacity:
http://www.apa.org/pi/aging/diminishedcapacity.pdf.

General Online Resources

For online end-of-life resources by topic and state:

http://www.edeledata.org/search/home.html

To find online resources for end-of-life topics by topic:

http://www.finalchoices.calhealth.org/search.htm

To search a comprehensive database of reviewed resources for end-of-life care by topic:

http://www.growthhouse.org/search.htm

A link to end-of-life care resources for practitioners developed by the American Psychological
Association:
http://www.apa.org/pi/eol/homepage.html

Grief and Bereavement

To search for local grief-support groups:

http://www.griefshare.org/findagroup/

Search for online grief-support sites for adults and children:

http://www.griefnet.org/support/sg2.html
 To find assistance locating community resources for grief and bereavement:
http://www.aarp.org/families/grief_loss/a2004-11-15-community.html

Locating Caregivers

Search for eldercare and resources for those who wish to live independently by zip code:
http://www.eldercare.gov/Eldercare/Public/Home.asp

To locate a hospice by city and state:

http://www.hospicedirectory.org/

Spirituality

To search by topic for a listing of books, audiotapes, and Web sites devoted to spiritual care for
those who are dying:
http://www.spcare.org/resources/

In the following vignette, common attitudes and behaviors of physicians are examined in terms of their
impact on dying patients and their families.

In a video developed for a physicians’ end of life training program, family members share their experiences
with doctors who had been ill-prepared to handle their dying relatives. In some cases the doctors neglected
to share critical information with the family, including the fact that their relative was very close to death.
Other patients were distressed by the treating physician’s hurried referral to another doctor, which they
experienced as abandonment. Another example included a loved one being denied adequate pain
medication because of the physician’s misplaced fears about addiction.

Palliative care experts offered explanations for why physicians, who are overwhelmingly “good persons who
want to do well,” fail at treating their dying patients. Much of the blame lies on the scientific method of
medical training, and on the resulting philosophy that death is a failure to “fix” a patient. Medical doctors are
not taught how to handle situations when the shift from “cure” to “comfort” occurs. There still exists a lack of
training in palliative pain management.

One way to improve and enhance end of life care, they suggest, is to take a hard look at how we ourselves
want to die. To that end, a complete physician is “a scientist, humanist, friend, and comforter.” To achieve
that, they say, requires deep introspection and the coming to terms with one’s own attitudes about, and
expectations regarding, dying and death.
Used with permission from the © EPEC Project, The Robert Wood Johnson Foundation, 1999.

Please complete the following exercises (space is provided for you to write your response):

Describe both helpful and problematic attitudes and behaviors you have encountered in your
interactions with physicians caring for those near the end of life.

Describe the ways in which you might assist dying clients and their families with responding to both
helpful and problematic attitudes and behaviors that you have encountered in your interactions with
physicians caring for those near the end of life.

One of the critical functions of a mental health provider caring for patients and their families near the
end of life is to facilitate their building relationships with the health care team. Too often, mental health
providers allow themselves to join or align with the angry responses of patients who are disappointed with
various aspects of their health care. Instead, it is important for mental health providers to respond
empathetically and yet focus on supporting patient and family efforts to establish positive, problem-solving
relationships with the health care team. Not all members of the health care team are good at all things.
Technical skills vary and so do interpersonal, problem-solving, and social support skills. It is important for
patients and their families to learn how to tap into the strengths of their various providers and to learn to
communicate effectively to advance their care and ensure that their needs are met.

IV. Attitudes about Death and Dying

Approaches to Assessment
The dominant focus of death-attitude researchers has been the measurement of death anxiety, fear,
and related concepts. According to Neimeyer, Moser, and Wittkowski, (2003), the term “death anxiety” typically
refers to a cluster of death attitudes characterized by fear, threat, unease, discomfort, and similar negative
emotional reactions, as well as anxiety in the psychodynamic sense as a kind of diffuse fear that has no clear
object. Most of the instruments designed to assess death anxiety assess the fear of dying and/or death as a
relatively stable personality disposition (trait). The evolution of measures of death attitudes has moved from
global assessments to more multidimensional scales and from the general measurement of death anxiety to
attitudes of particular relevance in various life contexts.
Neimeyer et al. (2003) reviewed a number of promising approaches to the assessment of death
attitudes. The authors focused on nine general questionnaires for measuring death anxiety, fear, threat,
depression, and acceptance as well as four specialized measures of death self-efficacy and coping, readiness
for death, and desire for hastened death. They also offered an orientation to non-questionnaire-based
techniques for the assessment of death attitudes (e.g., narrative measures, repertory grids, behavioral
observations, death personifications, and drawings).
According to Neimeyer (2005), the broad array of tools that exist to measure attitudes toward death
offer a refined view of different facets of death concerns, such as fears concentrating on the pain involved in
dying, on spiritual issues, on existential questions regarding the confrontation with the unknown, on concerns
for bodily integrity after death, on the inability to accomplish important life goals or purposes, and on the impact
of one’s death on others (Florian & Mikulincer, 1997; Hoelter, 1979; Lester, 1994; Neimeyer & Moore, 1994;
Wittkowski, 2001). Thus, appropriate selection or modification of established measures for the end-of-life
context could help target interviews and interventions to those domains of concern to a given patient as well as
document the efforts of treatment programs in ameliorating them. In addition, because some measures
specifically assess such attitudes as the acceptance of death as a natural conclusion of one’s life, as a release
from suffering, or as an entry to an afterlife of reward (Wong, Reker, & Gesser, 1994), they have the potential
for providing guidance in identifying patient resources as well as vulnerabilities (see Neimeyer, Wittkowski, &
Moser, 2004, for details).

Major Findings
Old age is not a period of preoccupation with death. In fact, death anxiety tends to decrease from mid-
life to old age (see Neimeyer et al., 2004, for a review). In general, the specific features of death that cause
distress or concern in the elderly are different from those that distress younger people. Thorson and Powell
(1994) found that younger subjects feared bodily decomposition, pain, helplessness, and isolation whereas
older subjects were more concerned about loss of control and the existence of an afterlife.
It is important to point out that death attitudes among the elderly are not uniform. Heightened death
anxiety has been found in older adults who (a) had more physical health problems; (b) reported a history of
psychological distress; (c) had weaker religious beliefs; (d) had lower “ego integrity,” life satisfaction, or
resilience; and (e) lived in institutions like nursing homes (Fortner & Neimeyer, 1999). Furthermore, older
Caucasian adults were found to be more fearful of the dying process whereas African-Americans were more
fearful of the unknown, for the status of the body after death, and of being buried alive (DePaola, Griffin,
Young, & Neimeyer, 2003).
According to Neimeyer et al. (2004), investigations of health in relation to death anxiety have produced
conflicting findings. Some studies have found no direct relationship between levels of physical well-being and
death anxiety whereas other studies show higher levels of death concern among the infirm. These conflicting
results probably stem from a failure to control for moderator variables such as social support, coping styles,
and religious beliefs.
A good deal of research has focused on the distinctive death attitudes of both medical and nonmedical
personnel. Generally, studies have failed to find consistent differences between medical caregivers and
various comparison groups (see Neimeyer et al., 2004, for a review). However, studies that have examined the
relationship between death anxiety among caregivers and their attitudes and work performance have been
much more illuminating. For example, Vickio and Cavanaugh (1985) found that nursing home employees with
higher levels of death concern had more negative views toward elderly persons and aging and were less
willing to talk about death and dying. Among physicians, higher death anxiety has been associated with more
negative attitudes regarding dying patients and more difficulty disclosing a terminal prognosis to a patient
(Cochrane, Levy, Fryer, & Oglesby, 1990; Kvale, Berg, Groff, & Lange, 1999). Eggerman and Dustin (1985)
found that doctors who are highly distressed by the possibility of their own death reported considering more
factors before informing terminal patients of their prognosis. Schulz and Aderman (1979) found that dying
patients of physicians having greater death anxiety were in the hospital for significantly more time than the
patients of physicians with low death anxiety. Their finding suggests that physicians with higher death anxiety
may be more likely to perform heroic treatment to prolong the lives of terminal patients during their final days in
the hospital.
Research with counselors shows how death attitudes can shape responses to patients in the area of
mental health. Kirchberg and Neimeyer (1991) found that beginning counselors ranked client situations
involving death and loss (e.g., bereavement, life-threatening illness, suicide risk) as more difficult to confront
than various crises ranging from sexual assault to substance abuse. Replicating this finding in a second
sample of counselors, Kirchberg, Neimeyer, and James (1998) reported that distress was higher for counselors
with greater personal fear of death. Moreover, those counselors with greater degrees of ‘‘fatalism’’ regarding
death responded with less empathy to the client scenarios. In contrast to beginning counselors, those with
many years of experience in counseling the dying and bereaved were comfortable with client situations
involving death and loss, and they responded more empathically to those types of situations than they did to
those that did not involve ‘‘life and death’’ issues (Terry, Bivens, & Neimeyer, 1995). This finding is further
supported by evidence that crisis counselors with higher levels of death acceptance respond more
appropriately to client situations involving the risk of suicide (Neimeyer, Fortner, & Melby, 2001).

Take a moment to reconsider the video about attitudes and behaviors of physicians that you watched
previously. Just like physicians, it is important that we as mental health providers come to terms with our own
attitudes about death and dying. One approach to better understanding our attitudes about death and dying is
to reflect on our responses to a standard death anxiety inventory like the Collett-Lester Fear of Death Scale
(Lester & Abdel-Khalek, 2003). The Collett-Lester Fear of Death Scale was designed to measure four separate
fears: death of self, dying of self, death of others, and dying of others.
See below for the Collett-Lester Fear of Death Scale. Please follow the instructions for taking it. When you
complete the scale please answer the questions listed below.

The Collett-Lester Fear of Death Scale Version 3.0

When you complete the scale please return to the main portion of the module and answer the questions about
your responses to the scale.

How disturbed or made anxious are you by the following aspects of death and dying? Read each item and
answer it quickly. Don’t spend too much time thinking about your response. We want your first impression
of how you think right now. Circle the number that best represents your feeling.

Very Somewhat Not

Your Own Death

1. The total isolation of death 5 4 3 2 1

2. The shortness of life 5 4 3 2 1
3. Missing out on so much after you die 5 4 3 2 1
4. Dying young 5 4 3 2 1
5. How it will feel to be dead 5 4 3 2 1
6. Never thinking or experiencing anything again 5 4 3 2 1
7. The disintegration of your body after you die 5 4 3 2 1

Your Own dying

1. The physical degeneration involved 5 4 3 2 1

2. The pain involved in dying 5 4 3 2 1
3. The intellectual degeneration of old age 5 4 3 2 1
4. That your abilities will be limited as you lay dying 5 4 3 2 1
5. The uncertainty as to how bravely you will face the
process of dying 5 4 3 2 1
6. Your lack of control over the process of dying 5 4 3 2 1
7. The possibility of dying in a hospital away from
friends and family 5 4 3 2 1

The Death of Others

1. Losing someone close to you 5 4 3 2 1

2. Having to see the person’s dead body 5 4 3 2 1
3. Never being able to communicate with the person again 5 4 3 2 1
4. Regret not being nicer to the person when he
or she was alive 5 4 3 2 1
5. Growing old without the person 5 4 3 2 1
6. Feeling guilty that you are relieved that the person
is dead 5 4 3 2 1
7. Feeling lonely without the person 5 4 3 2 1
 Very Somewhat Not

The Dying of Others

1. Having to be with someone who is dying 5 4 3 2 1

2. Having the person want to talk about death
with you 5 4 3 2 1
3. Watching the person suffer from pain 5 4 3 2 1
4. Seeing the physical degeneration of the
person’s body 5 4 3 2 1
5, Not knowing what to do about your grief at losing
the person when you are with him or her 5 4 3 2 1
6. Watching the deterioration of the person’s mental
abilities 5 4 3 2 1
7. Being reminded that you are going to go through
the experience also one day 5 4 3 2 1

Lester, D., & Abdel-Khalek, A. (2003). The Collett-Lester Fear of Death Scale: A correction. Death
Studies, 37, 81–85. Used with permission by David Lester.

Which items evoked the most anxiety for you?

 Why do you think those items affected you that way?

How do you think your reactions to the items that most affected you might influence your work with
patients and families near the end of life?

In end-of-life care, professionals of all disciplines and levels of experience are subject to powerful
reactions to their work. These responses are far more diverse than simply “compassion fatigue” or “vicarious
traumatization.” Some of these responses originate in the helper, some “belong” to the patient (but are
knowingly or unknowingly incorporated by the empathic helping professional), and some belong to that
“alchemy” that takes its own place in the poignant relationship between helper and patient. Whether we are
physicians, chaplains, nurses, social workers, psychologists, physical therapists, or occupational therapists;
whether we are administrators, professors, or teachers in clinical residency programs, we have certain
attitudes and values, ethics, socio-cultural influences, personal life histories and memories, preconceived
notions and assumptions that we inescapably bring to our work (Katz & Johnson, 2006).
Our real, often intense reactions to work in end-of-life care tell us that there is a personal-professional
interface between our own life developmental tasks and our professional interactions (Genevay & Katz, l990).
These countertransference responses—that is, emotional, cognitive, and behavioral responses to our work,
whether prompted by our patients, by the dynamics incumbent to our helping relationships, or by our own
inevitable life experiences—can be complex and often enormously subtle in their manifestations. They
inevitably affect every interaction, every theoretical discussion, every diagnostic work-up, and every treatment
plan.
Unfortunately, “Countertransference 101” is not typically offered in universities and graduate schools
across the country. Rarely are we trained to examine the ways in which our personal and professional lives
dovetail and resonate with each other. Yet, it is precisely through exploring our personal responses that we can
become more effective practitioners. Countertransference reactions are natural, appropriate, and inevitable.
They are crucial sources of information about the patient and can be indispensable instruments in our work
(Katz & Johnson, 2006).
If we do not take the time to reflect upon or to identify the meaning of our countertransference issues,
we may respond in ways that gratify our needs to rescue and be needed, or we may intervene in ways that
alleviate our anxiety or guilt, or that soothe our own suffering and emotional pain. For example:

• The clinical nurse specialist, whose brother died in a tragic motorcycle accident, stays until the
wee hours of the night to comfort parents of a dying child. Whose needs are being met? And,
how can we be sure?
• The psychologist whose religion does not permit hastened death—how does she “help” a family
in their decision to remove life support from their elderly, neurologically impaired mother?
• The social worker whose culture deems it “right” to bring a family member home to die—how
“objective” can he be in spelling out the options available to patients and families near the end
of life?

Countertransference is always specific to the psyches and unique personalities of the two individuals
involved in the helping relationship. Although each mutually influences the other, as clinicians, we bear the
crucial responsibility for containing and maintaining the professional boundaries and frame in our work. We
must be both participant and observer, allowing ourselves to be drawn into the patient’s experience, while
simultaneously remaining sufficiently separate so we can monitor and more objectively understand what is
happening. Only then we can determine when our contributions are constructive or detrimental, and, only then,
can we intervene appropriately to limit their impact (Katz & Johnson, 2006).
How do we identify when we are caught up in our countertransference? And, how do we “unhook” once
we do? We must begin by scrutinizing ourselves, in our part of the therapeutic dyad. We must examine what
we bring to the therapeutic relationship, and, conversely, the ways in which it affects us. This often means
taking great risks in inviting our colleagues, supervisors, and supervisees into our thoughts about our clinical
work. If we are to truly work with our countertransference responses, we are inevitably putting ourselves in the
position of disclosing uncomfortable, even embarrassing, moments, actions, and outcomes of our work. It may
mean that we reveal interactions, diagnoses, treatment recommendations, and the like, which, upon their later
reflection, were not as “objective” and “helpful” as we would have liked to have believed.
Admitting to our professional foibles (influenced by our personal life histories and experiences) not only
benefits our patients, it benefits us—and, perhaps, even our colleagues. When we can bear to examine
dynamics such as how we both overhelp and underhelp patients and families; how personal feelings, cultural
and religious biases, and prior life experiences can contribute to inappropriate diagnosis, referral, and
intervention; and why treatment is prolonged with some patients and terminated prematurely with others—our
forthrightness can encourage other professionals working in end-of-life care to confront and examine their own
denial, fear, helplessness, and anger related to death and loss, as well as their needs to control, cure, save,
and “do good.”
To locate more specific tools and exercises for recognizing, unhooking from, and utilizing
countertransference, see Katz, R. S., & Johnson, T. J. (2006). When Professionals Weep: Emotional and
Countertransference Responses in End-of-Life Care.
New York: Routledge.
 Mrs. S. is a 60-year-old, woman diagnosed with metastatic colon cancer. She was admitted to the
inpatient oncology unit post-treatment because of increased pain and significant distress. Mrs. S. stated her
major concerns were “fear and hopelessness, pain all around my belly, my family and friends don’t care about
me.” She was worried
about her finances and whether she would be able to continue to support herself. Because she had been in
psychotherapy in the past, Mrs. S. requested a mental health provider to help her cope with “feeling
overwhelmed.”
Mrs. S. has a history of depression and anxiety that predates her life-limiting diagnosis. She has seen
“lots of therapists” over the years. She has also “read a lot of self-help books” and explored different
complementary and alternative therapies, especially since her cancer diagnosis. She stated that she was
“doing very well” until just prior to this admission. Being in hospitals always made her feel “anxious and out of
control.” She stated that, “Things get done at the convenience of the nurses and doctors, not the patients. You
never know if they’re going to show up when you need them.” There were “surprises” whenever she was in the
hospital. It was during her previous admission that she learned that the chemotherapy was “not working,” and
that her cancer had progressed. Although she was beginning to feel comfortable with her oncologist, she
mistrusted physicians and disliked having to see “doctors I don’t know. And I really don’t like it when those
teams stand around your bed and stare at you every morning.” She reported that she felt hopeless because
she knew she was “getting worse” and “couldn’t do anything about it.”
When asked what her belly pain meant to her, Mrs. S. reported that her pain meant her cancer was
getting worse, and that she would not be able to have her colostomy reversed. She was always very physically
active and “in great shape” prior to her cancer diagnosis. She was now very self-conscious about her body and
fearful about continuing a physically intimate relationship with a male companion.
Mrs. S. also reported feeling “guilty,” and believed she was “being punished for being a seeker” and
questioning the religion of her birth and childhood. She had explored, and participated in, many different
religions and spiritual traditions over the years. Her current affiliation was with a Christian church because
“members of the congregation were very nice to me.” However, in recent months she was beginning to feel
drawn to the religious tradition in which she was raised.
Mrs. S. was divorced many years ago. She was trying to “reconnect with” her daughter from whom she
was alienated for quite some time. She recently learned that her daughter was pregnant, which made her feel
“very happy and very anxious.” Her daughter’s ideas about child rearing were very different from her own, and
their conversations often ended with tension and disagreements. She worried that she might die before the
birth of her granddaughter. She was also very sad that she would not live long enough to witness significant
milestones in her grandchild’s life.
Mrs. S’s mother was ill and in a nursing home. She stated that her mother was “demanding” and she
always fell short of pleasing her. Even now, she would call and wonder why she did not come to see her. Mrs.
S. reported feeling guilty that she was not able to care for her mother. And she felt “sad and helpless” that she
would likely predecease her. “It’s a terrible thing for a parent when their child dies before they do.”
Several staff members on the unit have observed that Mrs. S. is often “tearful, irritable, and angry” and
there are numerous reports that she is difficult to work with and “attention-seeking,” ringing her call button
frequently for unimportant reasons.
Mrs. S. often questions medications prescribed to her, needing to look at the pills or read the labels.
Some staff requested a change in rotation schedule so they could avoid working with her.
Please answer the following questions (space is provided for you to write your response):

What part(s) of the case evoked the strongest feelings in you and what were those feelings?

How might your feelings affect your work with Mrs. S. or clients like her?
V. Clinical Activities of the Mental Health Provider in End-of-Life Care
Haley, Larson, Kasl-Godley, Neimeyer, and Kwilosz (2003) described four phases during which mental
health providers can aid patients and family caregivers with end of life issues. These phases include (1) before
life-limiting illness strikes; (2) after life-limiting illness is diagnosed and treatment options are being considered
and engaged; (3) during advanced illness and the dying process; and, (4) during the post-death period of
bereavement.

Before Life-limiting Illness Strikes

Any one of us can suddenly and unexpectedly become seriously ill. In such cases, decision making and
subsequent care is much easier and less stressful if there have been family discussions about preferences for
end-of-life care and legal directives have been established. Mental health providers, who are accustomed to
discussing personal matters with patients and who may be working with clients on issues related to health and
family relationships, can assist by promoting discussion of death and dying, advance care planning, the use of
living wills, and the designation through legal action of someone to have a durable power of attorney for health
care matters.
Mental health providers can help those they serve become more aware of unique individual needs and
assumptions about dying and death. They can identify common problem areas for families, significant others,
or intimates facing death; encourage clarification of values regarding end-of-life issues, provide information
about advance care planning and how to implement it, and clarify issues involved in difficult end-of-life
decisions. They can also raise awareness of when or how sexism, ageism, ethnocentrism, and ableism
influence end-of-life planning and decision making as well as the social and cultural pressures that may result
in some groups and individuals being devalued.
It is also important for mental health providers to educate patients and families about ethical and legal
issues that sometimes arise when decisions to limit treatment have the potential to affect the manner and
timing of death. Legal and ethical issues related to end-of-life decisions can, at times, become quite complex
because there have been several important state- and federal-level cases that have affected the ethical and
legal landscape of end-of-life decision-making. (These topics are covered in detail in the Ethics and Legal
module.)
One of the most important roles of mental health providers is educating patients and families about
death and dying and dispelling myths that can interfere with people’s ability to receive the best possible care at
the end of life. The Hospice Foundation of America (HFA) has developed a variety of helpful educational
materials for this purpose (See this site http://www.hospicefoundation.org/endOfLifeInfo/), including a fact
sheet that can help providers debunk myths and better support dying persons and their families (See this site
http://www.hospicefoundation.org/endOfLifeInfo/myths_dying.asp).
Research on advance directives tell us that the completion of forms such as living wills is not enough to
ensure that end-of-life wishes will be honored and not enough to ease the burden that inevitably falls on that
individual’s loved ones when decisions about life-sustaining treatment must be made. (These topics are
covered in detail in the Advance Directives module.) The use of advanced directives must be part of a
comprehensive advance-care-planning process that shifts the focus away from the one-time completion of a
form to a broader discussion about values and treatment goals that takes individual and cultural factors into
consideration.
How should mental health care providers approach advance care planning for patients of different
ethnicities at the end of life? Some writers on end-of-life care have attempted to create lists of attitudes and
beliefs for health care that are “typical” of individuals from different ethnic groups. Although such lists are
appealing and potentially useful in that they provide information about culture-specific beliefs and attitudes,
they may also create problems if clinicians do not pay attention to the individual with whom they are working
(Klessing, 1992; Koenig & Gates-Williams, 1995). It has been suggested that there are more differences within
ethnic groups than between them (Klessing). Individual differences, family history, and level of acculturation
are just a few of the variables that may affect an individual’s response (Wright, Cohen, & Caroselli, 1997).
Clinicians must be careful that they do not substitute research data for conversations with individuals
(Blacksher, 1998).
In order to work effectively with patients and families from a broad variety of ethnic groups, clinicians
have been advised to approach people as unique individuals, paying attention to their social contexts
(Blacksher, 1998; Klessing, 1992; Koenig & Gates-Williams, 1995) rather than relying on data about group
differences, which can obscure individual differences. Providers working with individuals from different
backgrounds are advised to embrace the patient’s definition of family, recognize the cultural biases inherent in
the medical system, recognize the diversity of health care practices, incorporate different perspectives on
autonomy, and establish an approach to advance care planning that is sensitive to these issues (Kagawa-
Singer, 1994).

After Life-Limiting Illness Is Diagnosed

In the aftermath of a diagnosis of a life-limiting illness, mental health professionals can be advocates for
including the patient and/or family members as part of the health care team. The time of diagnosis can be
difficult and uncertain for patients, and it is associated with a range of emotional reactions. Mental health
providers can assist individuals in managing these feelings, in making sense of their diagnosis, in
communicating their treatment preferences to their medical providers and family, in using effective coping
responses, and in mobilizing social support and other services (Haley et al., 2003). Although there are many
potential sources of psychological distress near the end of life, concerns about physical suffering, quality of life,
cognitive impairment, autonomy and control, burdening others, and isolation and abandonment are common.
(These topics are covered in detail in the Psychological Distress module.)
The mental health provider is typically the key professional who can work to assure that the impact of
illness on the family is not forgotten in efforts to provide care to the patient. Family caregivers can benefit from
information, emotional support, and problem solving. Information can come from many sources, including
pamphlets, books, and support groups. Understanding the symptoms of illness, the meaning of symptoms,
common treatments, and even medical terminology can be very useful in reducing stress due to uncertainty.
There are a number of books written for the lay public that are highly recommended in terms of educating
caregivers about issues that they may face throughout different phases of caregiving (Mace & Rabins, 2001;
Sankar, 1999; Shanks, 1999. Another important general information site is the Web page for the Family
Caregiver Alliance (See this site http://www.caregiver.org/caregiver/jsp/home.jsp). In addition, the web link for
Caring Connections provides caregiving information specific to end of life issues (See this site
http://www.caringinfo.org).
Caregivers can gain some emotional support from psychologists and other professionals, but a key
intervention can also be to engage the caregiver’s social network. Caregivers may be hesitant to express their
needs or to ask for help. Many people who take on the caregiving role are highly self-reliant and proud of their
ability to provide care. Mental health workers can work to help caregivers accept assistance and support from
others and to stay involved in enjoyable and fulfilling activities. Caregivers need to hear that they should not
allow caregiving to engulf them and overwhelm them. They also need to know that, if they become run down
from providing care, they will be of no use to their loved one because they will be unable to continue to provide
care (These topics are covered in detail in the Family Caregivers module.).
The hospital setting provides many opportunities for working with patients and families immediately
after life-threatening illness is diagnosed and treatment begins (These topics are covered in detail in the
Interdisciplinary Teamwork module.). Many patients with life-threatening illness have had little experience with
the medical system. They are typically bombarded with a great deal of information, often in language they do
not understand, and they are expected to make decisions quickly under very stressful conditions. Many
patients feel intimidated and many have never taken an active role with medical professionals. Learning to
work in partnership with their medical team is a process that involves acquiring new skills. Since mental health
professionals are well-versed in assisting individuals with acquiring skills, they can play an important role in
helping those patients with life-threatening illnesses to adjust to illness.
Assisting patients and families to get what they need from visits with their medical team may involve a
variety of activities. Here are a few ways to help.
• Help to prepare a list of questions and concerns that patients want to discuss and suggest they
take them in to their appointment. No matter how well prepared, it is difficult to remember what
to ask during the appointment. Since communication is a two-way process, mental health
professionals can help patients be prepared and organized for physician visits. Remind them to
write down the answers they get. Allowing opportunities to think through their concerns may
help patients realize what is most important to them. Such discussions may help increase their
confidence and sense of mastery in a situation that could otherwise be intimidating.

• Be attentive to underlying fears while helping to identify and formulate questions. Sometimes
individuals are not well informed about their disease because of fears or concerns of which they
may not be aware. Mental health professionals are uniquely qualified and trained to hear these
unspoken concerns. Gently probing with questions (e.g., “What would that mean for you?” or
“What might that be like for you?”) may help the patient to articulate what he or she is trying to
avoid that may be causing more distress. Supportive presence and time that perhaps only
mental health professionals may be able to provide to “be with” these questions and fears offer
unique contributions to caring for individuals, especially at times of transition.

Many individuals may have a poor sense of mastery or poor self-concept from problems that
occurred prior to their diagnosis of life-limiting disease. They are especially vulnerable to
feelings of discouragement, helplessness, and distress. Mental health providers can support the
possibility for change and growth, even in the context of palliative/end-of-life care. Hearing that
their needs are as important as others and hearing that they have a right to their physician’s
time and attention can have a transformative effect. Mental health professionals can help the
patient/client find the language to express his or her needs. Providing attentive, positive regard
and encouragement; modeling; and opportunities for rehearsal are some interventions that can
foster feelings of being valued and taken seriously.

• Suggest that they bring a family member or friends along to the appointment. It is always helpful
to have an extra set of eyes and ears who may hear different details during the discussion. The
additional support and opportunity to review the content of the appointment at a later time are
invaluable. Some individuals may prefer to bring a tape recorder along to their appointment.
They can replay the tape for themselves or family at a time of their choosing, sometimes
hearing things they may have missed during the appointment.

• Help them to set priorities for time with the physician. Appointment time is limited to 15, 20, or
30 minutes at the most. The physician will need time to examine the patient and review their
goals for the appointment. Since there will not be time to review a long list, help the patient
prioritize his or her concerns in order to discuss two or three questions that are most important
to him or her. They have a powerful ally in the physician’s nurse partner, so suggest they seek
the nurse out to review questions. There may be additional members of a team such as a social
worker or spiritual care counselor with whom questions and concerns may be discussed.

• Suggest that they repeat back what the physician says. Repeating back what they have heard
will clarify what information “got in,” what needs repeating, what may have been misunderstood.
This opportunity for clarification is helpful for both patient and physician and may help their
communication skills over time.

• Assist in preparing for upcoming procedures or tests. Individuals nearing the end of life are less
likely to go through invasive procedures. However, they may have apprehensions about a scan
not previously experienced, or chemotherapy or radiation therapy for palliation of symptoms. If
they have previously experienced difficulties during a procedure, each time it is repeated, they
are likely to experience increased apprehension or anxiety in anticipation of the procedure. Help
prepare them by asking what they know, and reviewing the steps or stages of procedures.
 Suggest they go see an MRI machine prior to a scan or talk with other patients who have
experienced the same treatments.

• Help patients to identify where they may have choice points. Patients often feel powerless in the
medical system. It is important to help them learn when and how they can make choices. For
example, they can request that an injection be given in a different arm. Or they may choose to
wait until after an important family event for a procedure or test. They can ask to bring music or
a relaxation tape, perhaps one you made together, into a procedure to help decrease anxiety.

Advanced Illness And The Dying Process

When disease or illness progresses, patients must adjust to the shift from curative treatment to care
focused on disease and symptom management. Mental health providers can provide support and psychosocial
interventions to assist with anticipatory grief and
adjustment reactions, mental disorders, existential and spiritual issues, life review, and unresolved issues
(Haley et al., 2003).
With advanced illness, caregivers’ needs for information, support, and problem solving can escalate.
(These topics are covered in detail in the Family Caregivers module.) A structured problem-solving protocol
called COPE (creativity, optimism, planning, and expert information) has been created to assist caregivers to
develop problem-solving skills even very late in the course of illness, after admission to hospice. The COPE
procedure is explained in detail in a book that is available for both caregivers and professionals (Houts,
Bucher, & Nezu, 2000). The COPE intervention manual is available at the following Web page (See this site
http://hsc.usf.edu/nocms/nursing/docs/HomeCareGuide.pdf)
As physical symptoms and disability increase, so does the incidence of depression, pain, and cognitive
impairment (Breitbart, Chochinov, & Passik, 1998). Mental health providers are often asked to assist with these
problems.

Depression. Estimates of depression and anxiety range from 10% to 50%, depending on the particular
sample and research approach (Rosenfeld, Abbey, & Pessin; 2005, Wilson, Chochinov, de Faye, & Breitbart,
2000). A narrow, diagnostically focused approach for evaluating individuals with terminal illnesses has several
limitations. Many of the criteria used in the Diagnostic and Statistical Manual of Mental Disorders, Fourth
Edition ([DSM-IV] American Psychiatric Association, 1994) are problematic because they lack the specifics
needed to diagnose people near the end of life. A strict reliance on DSM-IV criteria can result in
overpathologizing many terminally ill individuals who are actually functioning adequately. Sometimes a brief
episode of tearfulness coupled with an objectively horrible set of circumstances will lead a clinician to assume
that a patient is depressed. In fact, many clinicians assume that all terminally ill individuals will experience
significant psychological distress as death approaches. Fortunately, this pessimistic outlook is somewhat
exaggerated. Many individuals maintain a calm, relaxed, and even hopeful attitude toward death and dying.
(These topics are covered in detail in the Psychological Distress module.)
A number of research studies and clinical treatises have highlighted the importance of cognitive
symptoms in general, and hopelessness in particular, in the assessment of depression in medically and
terminally ill patients (e.g., Passik et al., 1998; Pessin, Rosenfeld, & Breitbart, 2002). This emphasis is typically
premised on the assumption that somatic or vegetative symptoms of depression are often the result of physical
deterioration or side effects of medication rather than actual depression. Cognitive symptoms of depression are
particularly important because they provide the most accurate index of the severity of the depression in
patients with medical illness (Passik et al., 1998) and because symptoms such as feelings of hopelessness
have a profound impact on the will to live in terminally ill patients. Several studies demonstrated that terminally
ill patients who are both hopeless and depressed are substantially more likely to desire a hastened death than
patients who are depressed but not hopeless and patients who feel hopeless about their future but are not
clinically depressed (Rosenfeld et al., 2006).
Several different psychotherapeutic interventions have been found to be effective in relieving distress,
improving quality of life, and even prolonging life for the terminally ill patient (see Gibson, Breitbart, Tomarken,
Kosinski & Nelson, 2006, for a review). Psychopharmacologic interventions have also been found to be
effective in relieving depression and other forms of psychological distress in a large proportion of severely ill
patients (Gibson et al., 2006). Most experts recommend an approach that combines supportive psychotherapy,
patient and family education, and antidepressants (Block, 2000). Some medications used to treat depression
are impractical in palliative care settings because the time needed to achieve a therapeutic effect may exceed
the patient’s likely life span. As a result, rapid-acting medications such as psychostimulants have become
increasingly popular for the treatment of terminally ill patients. Psychostimulants such as dextroamphetamine,
methylphenidate hydrochloride (Ritalin), and pemoline (Cyclert) can help decrease depressive symptoms as
well as increase energy and alertness in depressed terminally ill patients, thereby improving psychological
functioning and quality of life

Pain. It is reported that approximately 75% of patients with advanced cancer have pain (Fitzgibbon,
2001) and that 50% of terminally ill patients experience moderate to severe pain (Weiss, Emanuel, Fairclough,
& Emanuel, 2001). In addition, estimates indicate that 25% of cancer patients die in severe pain (Twycross &
Lack, 1983). Studies have consistently shown that pain is frequently underdiagnosed and inadequately treated
(Twycross & Lack, 1983). The use of analgesic drugs alone does not always lead to pain relief (Hanks, 1991).
The interaction of cognitive, emotional, socio-environmental, and physical aspects of pain requires the use of
multimodal interventions in terminal illness (Breitbart & Holland, 1990). Psychosocial therapies directed at
psychological distress can have a profound impact on the physical experience of pain, and somatic therapies
directed at the physical experience of pain can produce beneficial effects on the psychological aspects of pain.
In pain management for the terminally ill, it is considered ideal to utilize somatic and psychosocial therapies
simultaneously (Breitbart, 1990). (These topics are covered in detail in the Pain module.)
Cognitive-behavioral techniques are very useful in for managing patient’s pain near the end of life. This
includes techniques such as passive relaxation with mental imagery, cognitive distraction or focusing,
progressive muscle relaxation, biofeedback, hypnosis, and music therapy (Cleeland, 1987; Cleeland &
Tearnan, 1986; Fishman & Loscalzo, 1987; Loscalzo & Jacobsen, 1990). Guiding the patient toward a sense of
control over the pain becomes the goal of treatment. Although some techniques are strictly cognitive in nature,
with a focus on perceptual and thought processes, others aim at modifying patterns of behavior to help patients
cope with pain. When using behavioral techniques for pain control, the goal is for the patient to modify his or
her physiologic pain reactions, respondent pain behaviors, and operant pain behaviors.
One of the most fundamental behavioral techniques is self-monitoring, which is the ability to monitor
one’s own behaviors. This technique allows a person to notice his or her dysfunctional reactions to the pain
experience while learning to control those reactions. To extinguish anticipatory anxiety that leads to avoidant
behaviors and to remobilize inactive patients, systematic desensitization can be a useful behavioral strategy.
Graded-task assignment is a technique whereby a therapist encourages the patient to take small steps
gradually so as to perform activities more readily. Finally, contingency management is a method of reinforcing
the “well” behaviors only, resulting in modification of dysfunctional operant pain behaviors associated with
secondary pain (Cleeland, 1987; Loscalzo & Jacobsen, 1990).
Techniques such as hypnosis, biofeedback, or systematic desensitization often make use of both
cognitive and behavioral elements, such as muscular relaxation and cognitive distraction. A review of non-
pharmacological strategies suggests that behavioral interventions can be helpful in managing a variety of
distressing physical and psychological symptoms. However, there is increasing evidence that these methods
are not equally effective. Although research on use of techniques to control pain is minimal, hypnotic-like
methods, including relaxation, suggestion, and distracting imagery seem to hold the greatest promise
(Montgomery, Weltz, Seltz & Bovbjerg, 2002; Sellick & Zaza, 1998).

Cognitive Impairment. The two most common cognitive disorders present at the end of life are delirium
and dementia. Cognitive changes near the end of life can complicate the patient’s involvement in palliative
treatment as well as in his or her understanding of the dying process. They may interfere with a patient having
a “good death,” one in which he or she can remain involved in the process, assist in decision making, and
communicate meaningfully with family and friends. Finally, cognitive changes during the dying process can
deprive families of the final opportunity to communicate with their loved ones, which may lead to significant
distress. (These topics are covered in detail in the Cognitive Changes module.)
Delirium is a cognitive disorder the symptoms of which include disturbances of attention,
consciousness, cognition, and perception. Other salient symptoms are alteration in sleep-wake cycle (these
patients are frequently up at night and sleep during the day) and perceptual disturbances (hallucinations,
paranoia). Rather than being constant, the symptoms of delirium usually fluctuate throughout the course of the
day. Typically, a delirium develops over a brief period, in a matter of hours to days (American Psychiatric
Association, 1999). Although single agents may be responsible for the development of a delirium, more often it
is the presence of multiple factors that contribute to a delirium and these factors are more common in patients
who have several medical issues (post-surgery, acute medical illnesses, etc.).
The principle cognitive symptoms of dementias include memory impairment and at least one of the
following cognitive dysfunctions: aphasia, apraxia, agnosia, or a disturbance in executive functioning.
Alzheimer’s disease represents the most common cause of dementia with vascular dementia as the next most
common. In contrast to delirium, the clinical course of dementia is insidious and progressive; individuals with
dementia typically display a slow and steady decline in their neurological functioning over several years.
Whereas delirium frequently occurs in the context of medical illness, dementias are usually related to aging
and are the most prevalent organic mental syndrome in older people.
The initial stage in the management of delirium is to determine, as far as is possible, the cause of the
delirium. Even with terminally ill delirious patients, an evaluation of the possible causes of the delirium may
identify a correctible factor, thus relieving the patient’s distress. This usually will involve an evaluation of the
potential medical causes of the delirium as well as the impact of any medications that the patient is taking that
could contribute to a confusional state. In patients expected to have some reasonable period remaining to live,
the worth of any such evaluation is unquestionable. For those patients whose disease process has advanced
and whose delirium may herald their imminent death, it may be both medically futile and unnecessarily cruel to
subject them to medical tests that may be only marginally helpful in elucidating the cause of the delirium.
Helping family members to weigh out the costs and benefits of further medical investigations can be a topic of
discussion facilitated by the mental health provider.
Providing instruction and support to the family and staff are important goals in the care of cognitively
impaired patients. Family members who have not had previous experience with delirium will find the acute
change in the mental status of their loved one both distressing and frightening. Support should be given to
family members and caregivers in the following areas:

• Provide psychoeducation about the nature of the disorder, its cause, and the likelihood of reversibility.
This includes information about the likely etiology of the disorder as well as the waxing and waning
nature of the disorder. For the patient expected to recover from this delirium, it helps to inform the
family and staff of this likelihood; families also need to know if a patient’s delirium heralds his or her
death.
• Enlist family members in the care of the patient by providing them with information about the
environmental strategies listed above.
• Provide consistency in the care of patients to reduce psychological distress. As much as is possible, it
is helpful to have staff approach patients in a consistent fashion.
• Accept a family’s cultural or religious belief system. Although most families will grasp in some fashion
the medical etiology of a delirium, other families may have specific religious or cultural filters through
which they will attempt to understand a delirium and its treatment. Some families, for instance, may see
a delirium as a form of “possession” that necessitates a religious intervention. Although it is essential to
explain to these patients, using translators if necessary, the medical causes and proposed treatment for
the delirium, the question of how to deal with the religious and cultural beliefs of a patient’s family
remains. The heightened emotionality associated with an end-of-life situation worsened by a
confusional state would suggest that attempting to dismantle a family’s cultural or religious belief
system may not only be futile but counterproductive to helping the family cope.

In recent times, there has been an increased interest in developing evidence-based interventions that
specifically target issues and distress that commonly appear near the end of life. Meaning-centered group
psychotherapy and dignity therapy are two such approaches. Meaning-centered group psychotherapy
(Breitbart, Gibson, Poppito, & Berg, 2004; Greenstein, 2000; Greenstein & Breitbart, 2000) is grounded in
Frankl’s (1959, 1992) theory of creating personal meaning from life experiences. A standard meaning-centered
group-psychotherapy course is comprised of eight weekly sessions, each of which is 90 minutes long. There
are seven topics (the third topic takes two sessions): (a) summary of concepts and sources of meaning, (b)
cancer and meaning, (c) meaning derived from the historical context of life, (d) meaning derived from attitudinal
values, (e) meaning derived from creative values and responsibility, (f) meaning derived through experiential
values, and (g) termination and feedback (Breitbart et al., 2004, pp. 370–371).
Harvey Chochinov and his colleagues (Chochinov, 2002, 2006; Chochinov et al., 2004; Hack et al.,
2004) have described a brief, individualized intervention called dignity therapy. Based on their research with a
group of terminally ill cancer patients, Chochinov et al. developed an intervention that enhances dignity by
helping patients understand their place in the world, particularly in relation to their loved ones. Dignity therapy
uses a structured clinical interview to help patients identify and explore past accomplishments, life values, and
future goals. The patient’s interview is audio-taped, and a transcript of the audiotape is used to create a
“legacy document” that captures the patient’s life in a way that can be passed on to the family (see Chochinov
et al., 2004, p. 140). Although this intervention is just now undergoing preliminary analysis, early results appear
promising. (These topics are covered in detail in the Psychological Distress module.)
It is clear that religious and spiritual beliefs are an important part of the illness and end-of-life
experience of both patients and their friends and families (Chochinov & Cann, 2005; Puchalski, 2006). Most
people rely on their spiritual beliefs for strength and comfort as they face their final days. As Puchalski (2001)
notes, death is a clinical event and dying is a spiritual experience with a potential for great meaning. Mental
health providers do not need to be experts in a faith and, in fact, they do not even need to be religious or
spiritual in order to assist dying individuals and their significant others with religious and spiritual issues. Mental
health providers do need to be able to listen respectfully to spiritual concerns, honor the importance of others’
spiritual beliefs, and respond empathetically and honestly.
When discussions move beyond a mental health provider’s area of expertise, it is important to refer to
knowledgeable and competent spiritual providers. Collaboration and referral, with the client’s permission, are
typically warranted if the patient or his or her loved ones are struggling with specific aspects of their faith and it
appears as if their concerns are based on their understanding of what they have heard or read from holy
sources. (These topics are covered in detail in the Spirituality module.)

During The Post-death Period Of Bereavement

The ending of the patient’s life marks the beginning of a changed life for survivors. Mental health
providers should recognize the biopsychosocial impact of bereavement, be alert to the signs of complications
in the grieving process, and be capable of assisting more profoundly distressed survivors in adapting to a world
in which their loved one is absent (Haley et al, 2003). (These topics are covered in detail in the Grief and
Bereavement module.)
Though the loss of a loved one typically presents significant challenges of an instrumental, emotional,
and social sort, recent findings from a unique prospective longitudinal study suggest that most bereaved
spouses ultimately adapt successfully to loss (Carr, Nesse, & Wortman, 2006). Although these and other
recent findings suggest that the majority of the bereaved follow either a resilient or adaptive grieving pathway
through their post-death experience, a minority became mired in chronic distress.
The concept of complicated grief or prolonged grief disorder (as it is now being labeled) has gained
momentum over the last 10 to 15 years as a distinctly defined psychological disorder that differs in important
ways from normal reactions to loss (Lichtenthal, Cruess, & Prigerson, 2004). In particular, prolonged grief
disorder (PGD) refers to a state of chronic mourning characterized by intense separation distress, intrusive and
disturbing thoughts about the deceased, a sense of emptiness and meaninglessness, trouble accepting the
reality of the loss, and difficulties “moving on” with life (Prigerson & Jacobs, 2001). Converging evidence from
multiple independent research programs demonstrates that such symptomatology is associated with a variety
of socially and personally debilitating responses to loss, such as activity restriction (Monk, Houck, & Shear,
2006), insomnia (Hardison, Neimeyer, & Lichstein, 2005) and impaired quality of life (Ott, 2003). Evidence from
several studies suggests that approximately 10% of the bereaved would qualify for a diagnosis of PGD and
that this diagnosis is associated with such factors as parental loss in childhood and insecure and dependent
attachment styles (Neimeyer, Prigerson, & Davies, 2002; Silverman, Johnson, & Prigerson, 2001). Likewise,
PGD symptomatology is most elevated for bereaved persons who struggle unsuccessfully to make sense of
their loss or find any compensatory benefit in it (Holland, Currier, & Neimeyer, 2006).
In addition to identifying bereaved persons at risk, mental health providers can help survivors adapt to
both the short-term and long-term challenges of loss. For example, in the short-term, the bereaved may benefit
from coaching in symptom-management techniques, such as relaxation skills and thought-stopping
(Meichenbaum, 1994). However, in the longer run, what seems to be called for are opportunities for emotional
self-expression (Pennebaker, 1996) and a deeper processing of the significance of the loss for their ongoing
lives (Neimeyer & Levitt, 2001). According to Haley et al. (2003, p. 630):

Recent advances in grief theory and research are leading to changes in the nature of grief therapy
(Neimeyer, 2001; Stroebe, Hansson, Stroebe, & Schut, 2001). Research increasingly suggests that
the attempt to reaffirm or reconstruct a world of meaning that has been challenged by loss is a core
process in grieving (Davis, Nolen-Hoeksema, & Larson, 1998; Neimeyer et al., 2002). Interventions to
assist survivors in making sense of the loss and perhaps even eventually finding a “silver lining” in it
may be especially helpful to troubled survivors. Indeed, current data suggest that many bereaved
people find new and sustaining meanings in their lives and losses, experiencing “posttraumatic
growth” (Tedeschi, Park, & Calhoun, 1998) with or without professional help. A small but growing
literature has begun to demonstrate that grief therapy can make a positive contribution to these
outcomes (Jacobs & Prigerson, 2000), although much of the literature on grief counseling and
therapy suggests more equivocal results (Allumbaugh & Hoyt, 1999).

Please reconsider the case of Mrs. S. presented earlier.

What would be your approach to this case and how would you communicate what you might have to
offer to other members of the health care team?
 Commentary about this case from a seasoned, multidisciplinary group of professionals working in a
hospital-based cancer units, hospice and palliative care settings.

Those offering commentary include

1. Robert Washington: chaplain and psychologist, Montgomery Hospice, Maryland

2. Sharon Valente: nurse and psychologist, Greater Los Angeles VA, California
3. Andrew Lasher: palliative medicine physician, California Pacific Medical Center, California
4. Kim Day: oncology social worker, Ireland Cancer Center, Ohio
5. David Feldman: psychologist, Santa Clara University, California
6. Linda Blum: nurse and nurse practitioner, California Pacific Medical Center, California
7. Susan Weisberg: clinical social worker, Hospice of the Valley, California

In the case of Mrs. S. there is an overall consensus from this group of professionals that while this is a
complicated case, there are steps and approaches they would recommend to address her concerns. There
are many psychosocial issues, most of which fall into the categories of 1) anxiety/feeling out of control, 2)
family issues, 3) conflict with care providers, and 4) guilt and feelings of being punished for being a Seeker.
Some approaches to addressing these would be to look at a therapeutic approach and explore her anxiety
and feelings of lack of control. Additionally, there may be ways to make changes to Mrs. S’s medical
environment, including limiting the number of team members involved in her care, selecting team members
who could build a trusting relationship with her, recommend a psychiatric evaluation because of her
previous depression and, perhaps, introduce some alternative therapies such as therapeutic touch and
Reiki therapy that could be offered in the realm of her care environment.

Goals for inpatient care which would lead to discharge and independent living would include: an insurance
determination to verify she has the coverage she needs, stabilization of pain and symptom management,
therapeutic help in dealing with her feelings of overwhelm, education about financial options and resources
she may not be aware of, guidance on colostomy care, and planning for the use of home nursing care or
social workers.

VI. Conclusion

With appropriate training in end-of-life issues, mental health providers are suited to carry out clinical
roles in assessment, intervention, advocacy, and interdisciplinary service delivery. Assessment at the end of
life includes several areas, such as evaluation of mood and anxiety disorders, pain, family and caregiver
interactions, psychological and cognitive functioning, and existential concerns. Mental health providers can
plan and implement interventions with individuals, family members, and other providers. They can treat clinical
depression if and when it arises in end-of-life contexts as well as other mental health problems. Mental health
providers can also provide end-of-life counseling, including facilitating emotional expression; helping caregivers
to appreciate the psychological dimensions of the suffering involved; and being effective listeners and
sounding boards for people who are dying, their families and caregivers, and even their health care providers.
Properly trained mental health providers can also work effectively with issues of mourning and loss, traumatic
stress, and general objectives for care of dying individuals (Weisman, 1972). Finally, mental health providers
can serve as advocates for good medical care along with other professionals (i.e., nurses, social workers, and
chaplains). The following poem offers thought provoking insight into mental health providers’ involvement with
patients and families near end of life.
Travelers

You know the lucky thing about my hip replacement?

she asked, not waiting for the answer.
It made me think about advance directives,
my living will, how I’d like to die.

Yeah, he said, her colleague

who chatted amiably with death
each day, like two old men
playing checkers in the park.
I know what you mean.

This is how it is
with the nurses, doctors, therapists
who walk down the halls of dying
as through the home of a relative,
pausing to leaf through the Geographic,
or straighten a family photograph on the wall.

They have earned their ease

the hard way,
learned to reach through the bramble
to find the fruit, add weight
to the rusty pail.

They have not so much grown inured

to pain as they have learned to savor it,
taste the sweetness in the grapefruit’s bite,
feel the glow of a day’s hard toil.

In the end, we need them

as we need seasoned travelers
met in an unfamiliar land.
They greet us on the steep trail,
in the twisting streets, point the way
to a good taverna, trace the path home.
Most of all, they help us
parse the dark syllables in our hearts,
bare them,

and seek cleansing

in the gathering storm.

--Robert A. Neimeyer

Copyright © Robert Neimeyer 2008, used with permission. Neimeyer, R. A. (2008). Travelers. In R.A.
Neimeyer, Spirit: selected poems. Charleston, SC: Booksurge.
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Authorship and Production Credits

This educational activity became a reality because of the dedicated and generous support of the following
authors and eNURSING llc’s staff members who provided technical support and coordination for the project.
We also acknowledge support for the development and testing of the Internet-based Education on End-of-Life
Issues for Mental Health Providers that was provided by Grant Numbers R43MH070226 and R44MH070226
from the National Institutes of Health, National Institute of Mental Health. Its contents are solely the
responsibility of the authors and do not necessarily represent the official views of the National Institute of
Mental Health.

John R. Anderson, PhD is the co-principal investigator of the Internet-based Education on

End-of-Life Issues for Mental Health Providers. Dr. Anderson is the technical content editor
of all modules and co-author of three modules: the Overview of End of Life Issues for the
Mental Health Provider, Religious and Spiritual Issues at the End of Life, and the
Assessment and Treatment of Psychological Distress Near the End of Life. Dr. Anderson is
the Senior Director of the American Psychological Association (APA) Office on AIDS, the
Director of the APA HIV Office for Psychology Education (HOPE) Program, and the Director
of the APA Behavioral and Social Science Volunteer (BSSV) Program. Dr. Anderson has
been responsible for the development and implementation of a variety of activities at APA
associated with practice, research, education, and policy pertaining to the end of life.
These activities have been carried out in collaboration with three expert panels: (1) the APA Working Group on
Assisted Suicide and End-of-Life Decisions; (2) the Ad Hoc Committee on End-of-Life Issues; and, (3) the
Children and Adolescent Task Force of the Ad Hoc Committee on End-of-Life Issues. Dr. Anderson has
authored numerous peer-reviewed articles and training curricula on the mental health and psychosocial
aspects of HIV/AIDS. His recent book, Ethics in HIV-Related Psychotherapy: Clinical Decision-Making in
Complex Cases, provides mental health providers with a practical guide for dealing with complex moral and
legal dilemmas posed by clients living with HIV/AIDS. Dr. Anderson has delivered over 100 presentations and
workshops on HIV/AIDS and end-of-life care at professional meetings and conferences during the past 15
years. In addition to his activities at APA, Dr. Anderson has conducted a private, mental health services
practice in Washington, D.C. since 1986. In his practice, he specializes in individual, couple, family, and
hypnosis therapies for people living with chronic and terminal illnesses. Dr. Anderson received his Ph.D. in
clinical psychology from the University of Kansas in 1988.
 Martha S. Mihaly, PhD is co-author of Religious and Spiritual Issues at the End of Life and
served as principal investigator for this project. She has worked in the development of
standards for curriculum in continuing education for psychologists and also in the
identification and development of end of life practice competencies for nursing students.
Dr. Mihaly previously worked as senior ethics investigator for the APA Office of Ethics and
has written about ethics for The Maryland Psychologist and Ethics and Behavior. Her
ethics research is on multiple relationships between client and clinician. Dr. Mihaly
received her PhD in General Psychology in 2006.

William E. Haley, PhD, is author of Family Caregiving Issues at the End of Life and co-
author of Overview of End of Life Issues for the Mental Health Provider. He is a
psychologist, researcher, and teacher who has been concerned with the problems of
family caregivers for over 20 years. Dr. Haley completed his PhD in clinical psychology at
the University of Massachusetts-Amherst. Dr. Haley’s research interests include
measurement of the psychological, social, and physical health problems experienced by
family caregivers, use of stress theories to understand caregiving, and the application of
research to improve interventions to assist these families. He specializes in gerontology
and has over 100 scholarly publications in journals including Journal of the American
Geriatrics Society, Neurology, The Gerontologist, and Psychology and Aging. Dr. Haley is
a former President of the Section on Clinical Geropsychology of the American Psychological Association, and
a past Chair of the Behavioral and Social Sciences Section of the Gerontological Society of America. He
serves on the Editorial Boards of a number of scholarly journals, including Research on Aging, and Aging and
Mental Health: An International Journal. He is also associate editor of the journal Psychology and Aging, and
is chair-elect of the behavioral and social sciences section of the Gerontological Society of America. He is
currently a professor in the School of Aging Studies at the University of South Florida, and holds joint
appointments in the department of psychology and the division of geriatric medicine. Dr. Haley also serves on
the Advisory Board for this project.

Renee S. Katz, PhD, is co-author of Overview of End of Life Issues. She is a

Licensed Clinical Psychologist, Licensed Clinical Social Worker and Fellow in
Thanatology: Death, Dying and Bereavement in private practice in Seattle. For over
25 years she has worked with the dying, bereft, and those living with life limiting
illness. Dr. Katz consults, teaches and trains locally and nationally in the areas of
grief and bereavement, gerontology, countertransference, and the addictions. She
received the American Cancer Society Leadership Award and the American Cancer
Society Division Award for Outstanding Program Development. Most recently, the
Washington State Psychological Association (WSPA) presented its Social Issues
Award to Dr. Katz in recognition of her outstanding application of psychology in the public interest in
the area of end-of-life care. Dr. Katz is co-chair of the WSPA End-of-Life Task Force and chairs the
Ethics and Professional Standards Committee of the Association of Death Education and Counseling
(ADEC). The author of many articles and chapters, she is co-editor of two books:
Countertransference and Older Clients (SAGE Publications, l990) and When Professionals Weep:
Emotional and Countertransference Responses in End-of-Life Care (Routledge/Taylor & Francis,
2006).
 James L. Werth, Jr., PhD is author of Law and Ethics Associated with Care at the End of
Life and co-author of Religious and Spiritual Issues at the End of Life. Additionally, Dr.
Werth provided consultation on practical applications for the entire program. He received
his PhD in counseling psychology from Auburn University in 1995 and his Master of Legal
Studies from the University of Nebraska-Lincoln in 1999. He served as the American
Psychological Association's AIDS Policy Congressional Fellow in 1999-2000 where he
worked in the office of Senator Ron Wyden from Oregon on end-of-life issues such as pain
management and hospice care. He has served on all three of the American Psychological
Association's end-of-life work groups. Dr. Werth is Professor and Director, PsyD Program,
at Radford University. He has written one book, edited/co-edited three books, edited seven
special journal issues, and written over 75 articles and book chapters on end of life issues and/or HIV disease.
Dr. Werth also serves on the Advisory Board for this project.

eNURSING llc’s Technical Support and Coordination

David Shuey, BS is the graphic designer and media specialist for the Internet-based
Education on End-of-Life Issues for Mental Health Providers project. His work with Dr.
Wilkie extends from 2001, when he worked on TNEEL-NE and TNEEL-SS developing slide
media, video, audio, online graphics, and marketing materials. His 11 years of design,
promotions, and marketing experience includes stints at Seattle's celebrated Intiman
Theatre as well as Youth Theatre Northwest. Earlier he worked in Eugene at the ed-tech
nonprofit ISTE (http://www.iste.org/) on the University of Oregon campus, where he also
received his BS in Journalism and Sociology. He is currently the graphic designer for
eNURSING llc and at the College of Nursing at the University of Illinois at Chicago. He was
on leave for the first half of 2008, traveling and working on volunteer microfinance projects
in Africa.

Laura E. Werling, CWC served as project coordinator on this project. She has worked
with eNURSING llc as administrative assistant, marketing director, and acting fiscal officer.
Mrs. Werling has worked in religious endeavors for more than thirty-five years in teaching,
training, counseling, leadership and supporting roles. In addition, she has fourteen years
financial experience working with Credit Unions and as branch manager.

Diana J. Wilkie, PhD, RN, FAAN is a co-investigator of the Internet-based Education on

End-of-Life Issues for Mental Health Providers and a Founder and the Chairman of
eNURSING llc. The primary mission of eNURSING llc is to create, develop, test, and
distribute evidence-based, electronic tools that facilitate patient-centered health care and
high-quality education of health care professionals. eNURSING llc developed, tested, and
are marketing PAINReportIt® (http://www.enursingllc.com/), the first computerized pain
assessment program for patients to complete themselves. Dr. Wilkie is recognized
nationally and internationally for her end-of-life expertise. She was a member of the
National Advisory Committee for the Promoting Excellence in End-of-Life Care National
Program, and she was a member of the Advisory Panel for ELNEC and the NHPCO/ISIS
Clinical practice Improvement Project, all of which are funded by the Robert Wood Johnson Foundation. She
consults extensively with groups focused on end-of-life issues and pain research, including in Taiwan where
the TNEEL (Toolkit for Nurturing Excellence at End of Life) program she developed now is being adopted
nationwide for medical and nursing education. She also is the Director of the Center for End-of-Life Transition
Research at the University of Illinois at Chicago (UIC), the first end of life research center funded by the
National Institutes of Health. Currently she also is a professor in the Department of Medical Surgical Nursing at
UIC. Since 1986, her research has been continuously funded, and her grants total more than $22 million in
support of pain and end-of-life research in populations spanning the life cycle including school-aged children,
adolescents, adults, and older adults. In addition, her expertise in computerized, tailored, multimedia
intervention research was vital to this project. Dr. Wilkie’s work has resulted in 90 publications and hundreds of
invitations to present on pain and end-of-life topics.

Han Yan, MS, ME earned a Master of Science degree in Computer Science from the
University of Illinois at Chicago and Master of Engineering in Chemical Engineering and
Computer Simulation from Chinese Academy of Sciences, and is working on Master of
Business Administration in the University of Illinois at Chicago. He earned his Bachelor
degree from Tsinghua University (Beijing, P.R. China) in Chemical Engineering. He has
more than eight years of experience in software development and is certified as Microsoft
Certified Application Developer and Sun Certified Java Programmer. He served as
programmer for the Internet-based Education on End-of-Life Issues for Mental Health
Providers project.

Shiping (Sam) Zong, PhD is a graduate of the Shanghai Foreign Language Institute, one
of the world’s best known linguistic education institutes. He earned his PhD and Master’s
degrees in Psychological Measurement, Statistics and Research Design from the University
of Washington. Dr. Zong began doing computer programming in 1984 and is considered in
China the founding father of computerized clinical simulations for medical education
purposes. He also played leading roles for the development of several national medical
education databases, being entrusted by the China’s Ministry of Public Health. In the last
eight years, Dr. Zong has led the programming teams for a dozen programming projects
and played major roles in web course design and instructional design. He is the lead
programmer and system analyst for the group. As the most senior member of the
eNURSING llc’s programming team, he served as programmer and statistician for the Internet-based
Education on End-of-Life Issues for Mental Health Providers study.