Palliative Hospice care Weeks 10-12

1. Advanced Care Planning and Endof-life Decision Making 2. Ethical And Legal Aspects of Palliative Care 3. Spirituality in Palliative Care

Objectives
8. Apply guidelines of advanced care planning and end of life decision making (Creative Thinking and Teamwork) 9. Identify bioethical and cultural beliefs and practices of a client/family/career with palliative care (Creative Thinking and Ethical Reasoning) 10. Apply spirituality in palliative care.(Pro active and spiritual values)

Advanced Care Planning and Endof-life Decision Making

Advanced care planning is a collaborative process among patients, family members, and health care professionals whereby patients : clarify their goals, values and preferences for future medical treatment. (Tulsky, 2005)

Part of advanced care planning process patients may choose to complete advance directives e.g. living will, and formally appoint decision-making surrogates e.g. durable power of attorney for health care. - Advanced care planning may help patients increase knowledge about and perceived control over the dying process.

Challenges in Advanced Care Planning

Health system issues, including professional time limitations on visits with patients and families, and patient engagement with multiple providers can impede professional s capacity to build rapport and trust.

Challenges in Advanced Care Planning

Clinicians may lack specific training in communication skills and willingness to broach and maintain discussions about potentially sensitive, emotionally charged issues with patients and families.

Challenges in Advanced Care Planning

Over use of medical jargon can also interfere with patient education, comprehension, and meaningful clear discussions. Patients and families may be reticent to ask clarification questions, not wanting to appear ignorant or to step outside the expected role of good patient .

Challenges in Advanced Care Planning

Psychological barriers such as fear and anxiety may influence the quality of advance care planning discussions. Patients and families may also become emotionally stressed during discussions that convey bad or sad news and their abilities to process and respond to information can be limited.

Communication Strategies for Advanced Care Planning

Development of a trusting relationship with patients and families is integral to high-quality medical care, especially at end-of-life.

Communication Strategies for Advanced Care Planning

Quality of the patient-clinician relationship trust and rapport can be enhanced by: Encouraging patients to share their concerns and questions using active listening, demonstrating respect, talking in an honest and straightforward manner, being sensitive when delivering difficult news, and maintaining engagement about advanced care planning issues with patient and family throughout the disease process.

Communication Strategies for Advanced Care Planning

Active listening involves the use of open-ended questions and appropriate reflection back about the content of the speaker s message. Allow sufficient time for patients to respond and to avoid the tendency to interrupt. Reflecting the main ideas and feelings of the patient s statement can be helpful.

Communication Strategies for Advanced Care Planning

Lo and colleagues (1999) remind clinicians that they do not have the sole responsibility for responding to the patient s suffering. Referring troubled patients and families to a social worker, psychologist, member of the clergy, or another mental health professional can be helpful and appropriate.

Communication Strategies for Advanced Care Planning

When patients and families becomes emotional, Tulsky (2005) suggest that providers: 1. Acknowledge the affect (This must be...) 2. Identify loss (It must be hard...) 3. Legitimize feelings (I think that is normal...) 4. Offer support (I will be here...) 5. Explore (What....)

Communication Strategies for Advanced Care Planning

Trust and respect are further cultivated when providers communicate in a straight-forward and honest, yet sensitive, manner. Evidence suggest that a vast majority of patients want to be fully informed about their illness and what to expect about their physical condition.

Communication Strategies for Advanced Care Planning

It is important that health care professionals be aware of their nonverbal behaviour and the context in which communication occurs with patients and families.

Rapport-Enhancing Verbal and Nonverbal Communication Strategies.

Verbal Strategies Use open-ended questions to explore patient concerns Paraphrase the content of the patient s communication using patient s own words. Validate patients and family members feelings Summarize broad themes during the interaction. Deliver diagnostic and prognostic information sensitively end with empathy. Assess preferences for receiving medical information. Avoid the use of medical jargon. Nonverbal Strategies Give patient undivided attention. Avoid multi tasking. Directly face the [patient at eye level. Avoid distracting mannerisms. Maintain an open posture. Lean forward Maintain appropriate eye contact. Be sensitive to and aware of cultural differences in non verbal behaviour. Develop self-awareness about one s own nonverbal behaviours and what they communicate to others.

Moore, C.D. (200t5a). Advanced care planning. In K.K. Kuebler, M. Davis. & C.D. Moore (Eds.). Palliative practices: An interdisciplinary approach. St. Louis: Elsevier Mosby.

Values Clarification and Discussion of Goals

Assessing the patient s understanding of his or her illness can help the health care professional better understand the patient s knowledge base and suggest areas for further patient education. Better to assess how much the patient wants to know about the illness; although most patients want full information about their condition, not all patients do.

Values Clarification and Discussion of Goals

Assessing the patient s understanding of his or her illness can help the health care professional better understand the patient s knowledge base and suggest areas for further patient education. Better to assess how much the patient wants to know about the illness; although most patients want full information about their condition, not all patients do.

Values Clarification and Discussion of Goals

Developing an understanding of patient values, or the principles, ideas or qualities deemed worthwhile, can help clinicians deliver appropriate patient-centered care. Patients can be asked to elaborate on what makes life worthwhile and to explain what the term quality of life mean

Values Clarification and Discussion of Goals Various tools have been developed to guide the discussions such as: 1. Making Medical Decisions (American Association of Retired Persons, 1996) 2. Five Wishes (Commission on Aging with Dignity, 1998) 3. Talking about your choices (Choice in Dying, 1996) and 4. Your Life, Your Choices (Pearlman, Starks, Cain et al, 2001)

Values Clarification and Discussion of Goals

Personal experiences with others illness, dying, and death. Patient expectations related to one s own disease process can be highly influenced by witnessing significant others coping with advanced illness and dying. Spirituality and existential issues figure prominently in how patients cope with advanced disease and dying. Box 4-2 p.55-56 listed suggested questions for advance care planning discussions.

Advance Directives
Karen Ann Quinlan Nancy Cruzan Terri Schiavo Are individuals who highlight the importance of advance directive completion prior to a crisis.

Sample Advanced Directive

Sample Advanced Directive

Sample Advanced Directive

Advance Directives
Public policies were formulated such as: Patient Self-Determination Act (PSDA) of 1990
Was the first federal statute to focus on the right of adult patients to refuse life sustaining medical treatment. It mandates that health care organizations that receive federal health care dollars must inform patients about their rights to formulate advance directives, provide community and staff education about the documents, and maintain policies pertaining to advance directives.

Advance Directives
Oral directives consist of discussions that patients have with family members, loved ones, and health care professionals about end-of-life treatment preferences. More common that written directives.
It may not meet the clear and convincing evidentiary standard required by some advance directive statues.

Advance Directives
Living Wills are documents that explicitly state patient treatment preferences. - Most commonly treatments to be avoided at end of life are explicated. But the documents may also specify types of desired treatments. - It specify treatment preferences related to DNR orders, life-sustaining therapies including mechanical ventilation, feeding tubes, antibiotics, hemodialysis and pain control.

Sample Advance Directive / Living Will

Sample Advance Directive with Living Will

Sample Advance Directive with Living Will

Advance Directives
Capacitated patients may choose to officially appoint a health care proxy or decisionmaking surrogate. Decision-making surrogates are able to assess current medical realities in the context of the patient s stated preferences to arrive at medically sound decisions that honor the patient s wishes.

Advance Directives
Patients should think about choosing a surrogate decision-maker who is able to cope with potential conflict. When patients complete advance directives, they should be informed that they are free to change the documents at any time.

Advance Directives
Clinicians should be aware of the POLST (Physicians Orders for Life Sustaining Treatment) form used in various states and locales across the country. Evaluation research indicates that POLST is effective in promoting end-of-life medical care that is congruent with patient wishes.

Surrogates, Families, and End-ofLife Decision Making

Working with patients family members as decision-making surrogates is a routine aspect of delivering palliative care. Through the appointment of an informed proxy, patient self-determination is extended in the face of decisional incapacity.

Surrogates, Families, and End-ofLife Decision Making

Surrogates and family members are routinely called on to use the substituted judgement standard, one of the predominant legal approaches adopted by courts that regulate the termination of medical treatment of incapacitated patient (Rhoden, 1998).
This standard mandates that medical decisions for an incapacitated patient be made as that patient would have made for him or herself if able and requires that the decision-maker be objective.

Surrogates, Families, and End-ofLife Decision Making

Best interest standard
This standard weighs the burdens of the patient's life in the current state against the befits of continuing life in that state. In order to terminate the treatment, the burdens of artificially prolonging a life must clearly and significantly outweigh its benefits. What is important is that the clients will have good death and his or her personhood is honored in the last phase of life.

Ethical and Legal Aspects of Palliative Care

Ethics the systematic examination of the moral life, which seeks to provide sound justification for moral decisions and actions of people. - Beauchamp & Childress (1994)
Ethical might mean: Having to do with the study of morality (an ethical question) Conforming to recognized standards of practice (ethical conduct)

Ethics is a form of philosophical enquiry and generally understood to be a system of action guided principles and rules which function by specifying the type of conduct: permitted (allowed), required (obligatory) and forbidden (never allowed) - Johnston (1999)

The aim of palliative care is to relieve suffering and to improve quality of life (WHO, 2003). It really means: Last chances The meaning and value of life Endings Making the situation better or right (ultimately dying)

To help you live until you die.

-Cecily Saunders, 1960

Ethical Dilemmas and Decision Making

Ethical Dilemma a difficult problem for which there is no totally satisfactory solution, or which involves a choice between equally unsatisfactory alternates. The most difficult decisions lie in the grey areas where the choices made may not result in the ideal or personally desired outcomes.

Framework for approaching an ethical dilemma (adapted from Johns, 1997)

Patient/Family perspective

Doctor s perspective

The Dilemma

Nurse s perspective

Organizational perspective

Ethical dilemmas are often conflicting: e.g. Truth telling may be harmful Respecting the autonomy of one person may conflict with the rights of another Thus it becomes difficult to know what is the right decision to make.

The practitioner needs to consider issues such as: Who has the authority to make decisions? Who has the power and position to act within the particular situation? Is there clear understanding of how and why these decisions were made?

Reflection as a framework for ethical reasoning

Ferrel (1998) offered an alternative model of ethical reasoning based on reflection. Main elements of the model includes: 1. Reflection or analysis 2. Judgement and action 3. Justification and reflection.

Reflection or analysis (guide questions)

What is the nature of the dilemma-what is really happening? What are ethical principles involved? What are the moral/legal rights of everyone involved? What are the professional s responsibilities? Whose decision is it and who will be affected? What are the likely outcomes in terms of burdens, risks and benefits?

Judgement and action

Making the decision and acting upon it.

Justification and reflection

Evaluating the decision was it the right option to take? Use personal reflection to consider the results of the action and how it may affect your future practice?

Examples of ethical problems in end-of-life care

Withdrawing or withholding treatment Unintended but foreseen consequences, eg sedating a patient Conflicts of interest involving dying patients in research Extraordinary versus futile treatments

Theoretical approaches
Value Judgement A Judgement that, in the broadest sense, is mad on behalf of someone else but may not necessarily reflect the right decision for the individual patient and family.

Ethical Theories
Deontology a theory based on obligations and duty Utilitarianism (consequentialism) this theory considers what actions achieve the greatest good Virtue ethics considers particular character qualities eg courage, wisdom, and justice, and what is a right and virtuous way to act.

Deontological Ethics
Doing what is right Unconditional respect for persons and in doing what is right regardless of the consequence. What is right however may not necessarily be good. A good action can also have a bad outcome. Eg whether to keep a confidence or to protect someone who is vulnerable by breaking that confidence.

Utilitarian Ethics (consequentialism)

Considers the value or merit of an outcome of an action rather than the action itself. Evaluates the ends produces by an action to determine the goodness or rightness. Strive to maximize the benefits and minimize misery for the greatest possible number.

Virtue-based ethics
Dates back to Plato and Aristotle in the 5th century BC. It is described as person-centered rather than practitioner-centered , in that it focuses on what is right and virtuous action as opposed to what guides actions in terms of rules and obligations. Ethics of caring

Ethical Pronciples
Respect for the individual Autonomy Justice and utility Beneficence Non-maleficence

Respect for the Individual

Due regard for the feelings or rights of others, avoiding harm or interference. Whnen we have seen and acknowledged our own hostilities and fears without hesitation, it is more likely that we will also be able to sense from within the other pole towards which we want to lead not just ourselves but our patients as well. - Nouwen (1976)

Autonomy
Respecting the unique individual and the way they define themselves though the way they live and the values and beliefs they hold. Respecting choices. It is restricted by other factors, such as the law, social tradition and the prevailing circumstances of a person s life.

Questions to ask in establishing autonomy in health-care ethics

Are all individuals equally autonomous? Are different decisions made by the same individual equally autonomous? To what extent are we obliged to respect these autonomous decisions? Consider the rights of the patient who chooses to die at home especially if it s the client s wish.

 Respecting autonomy requires that care provision be directed to the needs of the individual but nurses also have a duty of universal fairness and equity.

Equity and Justice

Nurses who are committed to the principle of equity and justice have a duty to campaign for further resources to improve services and to maintain standards of care. Justice demands that care provision is based on current evidence and best practice.

Beneficence and Non-Maleficence

Beneficence (doing good) underpins the duty to care. Non-maleficence (doing no harm)

Sedation of the imminently dying in palliative care practice means that: The patient is clode to death (hours or days) The patient has one or two severe symptoms that are proving refrectory to standard palliative acre The physician treats these symptoms with an effective therapy The therapy has a dose-dependent effect of sedation that is a foreseen but unintended consequence of trying to relieve the symptoms of distress.

Advanced directive (living will)

A formal written advanced statement by a patient refusing treatments in specific stated situations that may occur in a future illness. This tales effects if:
The maker of the advanced directive should become able to communicate at some future time. The circumstances specified in the advanced directive arise.

Vulnerable patient
Someone capable of being emotionally wounded or hurt-for example a patient with end-stage disease who is fragile and dependent and may be easily coerced or manipulated because of this.

Implications for Nursing Practice

Professional nursing is all about having the knowledge and skills to do things, an awareness of the relationship between how you act and about the potential outcome result of those actions.

Ethical choices should be guided not only by roles and principles but also by thoughtful analysis of feelings, intuitions and experiences. - Cooper, 1991

Spirituality in Palliative Care

Spirituality incorporation of a transcendent dimension in life. Religion an organized effort, usually involving ritual and devotion, to manifest spirituality. Faith the acceptance without objective proof, of something.

 Culture the learned and shared beliefs, values, and lifeways of a designated or particular group that are generally transmitted intergenerationally and influence one s thinking and action modes. Cultural competence the ability to perform and obtain positive clinical outcomes in crosscultural encounters. Spiritual care competence the ability to perform and obtain positive clinical outcomes in spiritual care encounters.

NHS in Scotland issued guidelines on the definition of spiritual and religious care Religious care given in the context of the shared religious beliefs, values, liturgies and lifestyle of a faith community. Spiritual care given in a one-to-one relationship, is completely person-centered and makes no assumptions about personal conviction or life orientation.

A Sense of meaning

Relationship

Hope
Our way of coping with life s variety of experiences, especially the difficult and uncertain times. Influenced by current and past life experiences. In times of illness hope is focused on an available treatment and that it will be ssuccessful. I hope my family will be OK.

Being There
Can counter feelings of abandonment but it can also be challenging. To be there without doing is not easy and demands time and experience.

Peace
Pain and symptom control are crucial in achieving a sense of peace; but this is broader than just physical needs. Key elements in achieving peace are information, honesty and a recognition that sometimes the answer has to be I don t know Honest recognition that sometimes we can t resolve all a patient s needs but it may be that we can help them cope with their needs and find peace.

Spiritual Issues in Palliative Care

The WHY questions * Why did I get Cancer? * Why me? * What have I done to deserve this? * Why did God allow this to happen? - When faced with these types of questions, one should utilize effective communication skills.

Six Step framework for responding to spiritual distress 1. Do not rush with an answer. 2. Listen actively. 3. Explore what has prompted this question. 4. Respond to the patient s feelings. 5. Be aware of your own feelings. 6. Refer to other professionals when appropriate.

Hopelessness
Characterized by a lack of interest and involvement in everyday life and a withdrawal from the company of others. This is a part of clinical depression

Spiritual distress
A person experiences feelings of despair in relation to their intrinsic personal beliefs and values. Linked to the concept of total pain, which recognizes that pain can have not only a physical component but also an emotional, a social and a spiritual component. Linked to suffering.

 Suffering a state of severe distress associated with events which threaten the intactness of a person. Linked to feelings of lack of control and an overwhelming sense of fear of what the future holds. See Box 6.2 for indicators of spiritual distress (p. 179-180)

 Family Distress it is important to recognize that the family can also be a source of stress and distress to the patient. Spiritual self-awareness One needs to appreciate our own essence of self. Be aware of our own feelings and spirituality, aware of the personal and professional limitations.

Spiritual Assessment and Care

The Multiprofessional Team
Made up of: In the community: general practitioner, district nurse, clinical nurse specialist and others as required. In a nursing home: the GP s, nursing staff, district and clinical nurse specialists and others. In hospices: the core team comprises chaplain, doctors, nurses, occupational therapist, pharmacist, physiotherapist and social worker. In hospitals: doctors, and nurses with ready access to a list of other named professionals.

 Skills and Boundaries It is the patient who will choose to whome they will talk and when and where. Privacy is often preferred and this explains why so many deep and spiritual conversations take place with nursing staff in intimate setting. Chaplaincy responds to the needs of the other person regardless of their faith, background or life stance.

Assessing Spiritual Needs

5 R s of spirituality Reason Reflection Religion Relationships Restoration

Assessing Religious needs

Many people will find comfort and meaning in their faith and associated sacraments and rites at such time.

Competence in Spiritual Care

1. Staff and volunteers with casual contact with patient/family 2. Staff and volunteers whose duties require personal contact with patients / families 3. Staff and volunteers who are members of the multiprofessional team. 4. Staff and volunteers whose primary responsibility is the spiritual and religious care of patients, visitors and staff.

Expected competencies
Appropriate understanding of the concept of spirituality at that level. Awareness of their own personal spirituality Recognition of personal limitations Recognition when to refer on Documentation of perceived need and referral options.

Expected competencies
At level 3 assessment, interventions and outcomes should be documented. Confidentiality is also introduced. At level 4 a competency framework for the expertise required of the chaplain or director of spiritual care, which includes being a resource, offering staff support, providing education and training and influencing the deleopment of national initiatives.

Limitations of assessment tools and Competency frameworks

Focus of care need to be individual to each patient and family, with care being provided by the multiprofessional team.