HFA 2005 Teleconference Planning Guide
Living with Grief: Ethical Dilemmas at the End-of-Life
Segment 1 The Ethical Framework: On What Can We Agree?
Segment Highlights
- Ethical decision-making at the end of life begins with the recognition that there is a body of law and practice that has evolved over the past 30 years and includes the following principles
- Incapacitated patients have a common law and a constitutional right to refuse medical treatment, even if that treatment is necessary to sustain life.
- Incapacitated patients have the same rights as patients with capacity; however, the manner in which these rights are exercised is different.
- No right is absolute; it must be balanced against countervailing rights and interests.
- The decision making process should generally occur in the clinical setting without recourse to the courts.
- In making decisions for incompetent patients, surrogate decision makers should apply the following standards, in descending order of preference: subjective standard, substituted judgment, and the patient’s best interests.
- In ascertaining an incompetent patient’s preferences (the subjective standard), the patient’s advance directive provides “clear and convincing evidence.”
- Artificial nutrition and hydration is a medical treatment and may be withheld or withdrawn under the same conditions as any other form of medical treatment.
- There is no ethical difference between withholding and withdrawing life-sustaining medical treatment.
- The right to refuse life-sustaining medical treatment does not depend on the patient’s life expectancy or being “terminally ill.”
- It is acceptable to provide pain medication sufficient to control a patient’s pain even if that may possibly hasten the patient’s death.
- Active euthanasia and assisted suicide are morally and legally distinct from forgoing life-sustaining treatment.
- Yet, these principles are not necessarily understood or shared by persons who are dying, their families and surrogates, or even health care professionals who may respond from their own values that may be framed from many factors including life experiences, cultural background and religious beliefs.
- Moreover, these principles are highly individualistic and rational – dealing with the patient’s need for autonomy and control while not necessarily considering the patient and family’s needs for care and support.
Segment 2 The Gaps between the Framework and Practice: Challenges and Approaches
A. Issues of Disclosure and Communication
Challenges- Health care professionals are often faced professional with obligations and ethical mandates to offer information to the person who is dying while encountering barriers to communication such as patient fear and anxiety, family concerns, as well as cultural barriers.
- Information sharing also may be constrained by other concerns such as privacy, confidentiality, legal considerations, and authority structures within the team.
- Communication also can be complicated by tensions created by financial exigencies and admission criteria in a highly competitive environment.
- There is a distinction between the ethical and regulatory requirements that govern the disclosure of information.
- The process of communication begins with a careful assessment of the patient and family’s knowledge and concerns. The key lies in listening to the patient to determine what that person needs to know, wants to know and can understand
- Sharing information has to be sensitively accomplished.
B. Goals of Care, Advance Planning and Surrogate Decision-Makers
Challenges- Even when advance directives are available, a number of ethical issues may arise:
- Advance directives may be vague and difficult to interpret and apply in the specific situation;
- Family members or the surrogate may not agree with the expressed wishes of the patient.
- The person who is ill may not have advance directives and is currently incapable of making decisions because:
- The person refuses to discuss it;
- The person may not be competent (children, individuals who are comatose, or persons with developmental disabilities or dementia).
- Health care professionals may be reluctant to engage the family or ill person in conversations about goals of care or not support the decisions that patient’s and their families make.
- The critical issue is effectively determining goals of care. This can be accomplished, for example, by asking the patient: “Tell me what is important to you and how I can help.”
- We need to educate health care professionals to take advantage of opportunities to discuss health care options in non-acute settings. There is a cost to the failure to discuss end-of-life care.
- Proactive, culturally sensitive practice is supported by ongoing education and supervision and active support by administration.
- There is a need for structures such as counseling and support groups to assist patients, families, surrogate decision makers and staff as they struggle with these decisions.
- When possible, it is important to allow families and surrogates the time and information to adequately process and prepare their decisions.
- We need laws and policies that clarify surrogate decision making in the absence of a specified agent.
C. Artificial Hydration and Nutrition
Challenges- There may be misconceptions and lack of understanding about artificial nutrition and hydration. In some cases, artificial hydration and nutrition may not be palliative and entail negative effects such as physical restraints and increased risk of infection.
- There may be strong cultural and religious values that influence decisions to withhold or withdraw artificial nutrition and hydration. Nutrition and hydration often are seen as essential aspects of humane care. It is important to acknowledge that these fundamentally disparate views cannot always be reconciled.
- Time trials may be an appropriate way to assess the effects of artificial nutrition and hydration and to provide opportunities to review earlier decisions.
- We need to offer education and emotional support to families, surrogates and staff.
D. Physician-Assisted Suicide
Challenges- The physician-assisted and assisted suicide movements are a reaction to the ways that the American Health Care System traditionally handles death.
- In many ways, these movements are an outgrowth of the emphasis on patient autonomy and control where the right to refuse technology and intervention has become an entitlement to control the time and circumstances of one’s death.
- Persons who express a wish to die often are expressing fears about present and future circumstances. Carefully listening, assessing and offering tangible services including hospice care may mitigate these fears.
- It is critical when a person does decide to take his or her life to acknowledge that others such as family and health care professionals may need counseling and support as they struggle with that decision and the subsequent death.
Segment 3: Where Do We Go from Here?
A. Policy Implications
Segment Highlights
- Primary and community-based services including managed care systems should actively address advance care planning.
- Institutions such as hospitals have the potential to support good end-of-life decision-making. This can be done by internal structures such as clinical conferences that assess if care was excessive, at variance with the patients advance care plans or goals of treatment, and whether timely referrals to other end-of-life care options such as hospice were offered. Regulatory agencies also have a role in holding systems accountable, assessing, for example, benchmarks such as the number of patients who died in ICU’s despite contrary expressions in their advance directives or the number of referrals to hospices.
- As part of good end-of-life decision-making, institutions should offer psychological and spiritual support to families struggling with ethical issues, assisting them in meeting their needs through peer support and counseling. Policies need to mandate payment to institutions for such services.
- Hospices need to forge alliances with disabilities and chronic illness groups to promote advance care planning. The hospice model of care is appropriate to use in managing a wide range of chronic illnesses and disabilities. The Medicare-Hospice Benefit should be redesigned to make hospice-like services more readily available.
B. Implications for Grief Reactions and Mourning
Segment Highlights
- End-of-Life decisions can both facilitate and complicate subsequent grief reactions and mourning processes during the illness and after the death.
- There is a need to create structures that give families and surrogate decision makers time to reflect and discuss their decisions and to offer families and surrogate decision makers’ grief support throughout this process and after the death of the person.
- Health care professionals also may be affected by end-of-life decisions. They, too, will need support and opportunities for mentoring and counseling as they mourn and struggle their own ethical stance, their sense of integrity, and their own personal vulnerability.
