Caring at the End of Life

Position Statement of AAIDD

I. Purpose and Scope

A. There has been increase in awareness of end-of-life and palliative care issues in recent years for the general public, as well as for people with intellectual and developmental disabilities (IDD). Despite these changes, clinical experience, public attitudes, medical practice, and legal opinion concerning caring at the end of life vary significantly across the United States. It is important that appropriate and accurate information be available to support sound decision-making. Evidence exists to indicate that people with IDD are particularly at risk when caregivers do not have clear, consistent, and ethically sound guidelines. The foundations for such guidelines are discoverable through analyses of existing medical, ethical, legal, and policy deliberations. The purpose of this Position Statement is to identify these foundational principles and to enunciate policies to guide care at the end of life for persons with intellectual or developmental disabilities.

B. The end of life has been defined by some to be the last 6 months of life, although this time frame may provide an artificial timeline for anticipated death. For our purposes, end of life refers to a period in which death is soon anticipated in individuals with life-threatening or life-limiting conditions. Individuals are not at the end of life when they are living in a stable condition that requires significant life-sustaining treatment (such as a mechanical ventilator or a feeding tube) and wish to continue receiving such treatment. Individuals may be considered to be at the end of life when: (1) they have a condition that is progressive and irreversible, such as late-stage Alzheimer disease or terminal cancer, or (2) they have a condition or functional impairment whereby improvement or recovery is not expected, and withdrawal of life-sustaining treatment is under consideration. Life may come to an end suddenly and unpredictably (for example from a fatal injury), in which case the policies expressed here will ordinarily not apply, although some of the basic principles may pertain.

C. Discussions about caring at the end of life ideally should begin before the last 6 months of life. These discussions should include statements about what care the person would like to receive if he or she was in one of the end of life conditions described above. Identification of every possible situation is not feasible, so these discussions should be sufficiently general to cover most situations yet specific enough to provide practical guidance. Legal or other professional assistance will be helpful when developing living wills, health care proxies, durable powers of attorney for health care, and other such statements about personal preferences. These statements should be updated periodically (perhaps every few years), taking into account medical advances, technological improvements, and changing perspectives during one’s lifespan.

D. This Position Statement applies to people with IDD who are at the end of life as defined above. Such individuals may be of any age across the lifespan, from infancy to elderly. The Principles outlined below define the context in which caring should be provided to all such persons who are at the end of life. The Policies outlined below specify which interventions are deemed appropriate at the end of life and which are not.

II. Principles

A. AAIDD recognizes four major principles that form the basis for disability policy: (1) Dignity, (2) Respect for Autonomy, (3) Life, and (4) Equality. These principles are explained below and related to end of life care.

B. Dignity: All persons are equally valuable, with or without disability, and deserve respect consistent with human dignity. The value of a person’s life is not related to the type, degree, or severity of disability. Inherent value must be distinguished from quality of life. Inherent value persists from birth to death, even though the quality of life may change as one approaches the end of life.

1. The quality of one’s life must be assessed from a subjective viewpoint, that is, from the point of view of the person with a disability. Having a disability is not by itself a form of suffering. People without disability who fear becoming disabled must not assume that their feelings are shared by those who are living with a disability.
2. The mere presence of IDD, or likelihood of having a disability in the future, does not make a person’s life less valuable. 
3. Decisions about care at the end of life must be made respectfully, consistent with the principle of Dignity. Withdrawing or withholding care may be appropriate in some situations, although it should not itself imply a lack of respect for the importance of that person’s life. Treatment should not be withdrawn or withheld only because a person has a disability.

C. Autonomy: Caregivers should always attempt, as much as possible, to discover the wishes and desires of the person with IDD and honor those wishes.

1. People generally express their preferences through verbal and/or nonverbal communication. Careful observation and interaction over time often clarifies what a person with IDD values as being important. Those who are closest to the person, such as family members, trusted caregivers, nurses, friends, and others, are best able to identify the person’s preferences when he or she is unable to express them directly.
2. Individuals with IDD should be encouraged to express their preferences about care at the end of life before situations requiring decision-making occur, if possible. Many children, adolescents, and adults with IDD are capable of expressing their preferences about end of life care, and efforts should be made to discern their wishes. These preferences should be documented. Examples of such documentation may include living wills, personal vision statements, health care proxy instructions, and/or other indicators of one’s wishes.
3. Decision-making capacity may vary in different situations. Health care providers must recognize that individuals with IDD whose legal competence is challenged nonetheless may have the capacity to express preferences about health care. These preferences should ordinarily be respected.
4. The principles of informed consent require that decision-makers have: (1) all of the information needed to make a decision, (2) the ability to assess the information adequately, and (3) freedom from undue influence by others. Caregivers must always seek to determine the uncoerced, authentic voice of the person with IDD and provide all of the information the person needs to express his or her preferences. Instructional strategies and/or training materials should be developed to assist individuals with IDD to access relevant information, analyze it effectively, and utilize it to assess options and make choices.
5. The process of self-determination helps individuals to apply the principle of autonomy in their lives and to identify their health care preferences clearly and effectively. Self-advocacy recognizes the autonomous, constitutional right of individuals with IDD to have their preferences respected.

D. Life: Caregivers should act to promote and protect the life of the person with IDD.

1. The best-interest standard should be the relevant basis for making decisions about treatment to promote and protect life. Normally the person determines what is in his or her best interest, and this takes precedence over all other determinations. When that is not possible, others may do so when they follow accepted legal procedures defined by state and federal laws and regulations. 
2. In some situations, continued life may not be in the person’s best interest. Existing law recognizes such situations as those in which: (1) life-sustaining treatment is clearly ineffective and would only prolong the process of dying and suffering with no prospect of reversing it; (2) the person is in an irreversible coma or permanent vegetative state (when those conditions are identified by qualified, expert neurological consultation); or (3) the treatment itself would impose excessive pain and suffering. 
3. People for whom religion and spirituality are important, including people with IDD, may believe that forgiveness, reconciliation, peace or eternal life with God is more important that continued life on earth. This judgment about the person’s religious or spiritual preferences should be made by the individual or his or her loved ones and should not be determined solely by health care providers.

E. Equality: Resources for caring at the end of life must be appropriate, sufficient, and available without discrimination.

1. There is a notable health disparity within the United States for people with IDD, particularly with regard to resources and health outcomes. Most individuals with IDD depend on public health care financing (Medicaid and Medicare), which may impact access to needed treatment. 
2. Needed treatment should be available in the most appropriate context, taking into account the person’s preferences and health care needs. People should not be required to live in a nursing home to get care that could be provided in a more natural setting, such as the person’s home.
3. All needed treatment must be provided. Needed treatment may include, although is not limited to, provision of home health care, nursing, medications, nutrition, hydration, and social interaction. Hospice care at the end of life should be available when it is appropriate. Adequate pain relief is essential to alleviate and prevent suffering at the end of life. Spiritual or pastoral care should be provided when it is desired. Public and private health insurance should cover these needs.
4. Economic incentives for reducing the cost of health care, such as rationing or managed care, may influence providers to restrict or deny life-sustaining treatment for persons with IDD. Providers should treat all patients equally, regardless of the presence or absence of such disabilities, and provide whatever resources are needed in the particular context.

F. Principles of Palliative Care: Guiding principles for the dying person.

1. Respect for the goals, likes, and choices.
2. Attendance to the medical, emotional, social, and spiritual needs.
3. Support for the family members.
4. Providing access to needed health care providers and settings. 
5. Supports excellent care at the end of life.

III. Policy

A. Permissible treatment options at the end of life are the same for people with IDD as for everyone else. This reflects the Equality Principle.

1. The wishes of individuals who have clearly and competently expressed them should be honored by caregivers and health care providers, consistent with the Autonomy principle.
2. The presumption should always be in favor of treatment. This reflects the Life principle. This presumption may be overcome in the clearly specified situations enumerated in section II on Life, no. 2, above. As such, there are times in which aggressive treatments at end of life may provide needless discomfort and suffering, without the benefit of improved outcome and prolonged life. Withholding or withdrawal of nutrition, hydration, and other medical treatments may be allowed in these situations.
3. Individuals in a “minimally conscious state” are not at the end of life as defined above. Withholding or withdrawal of life-sustaining treatment (including nutrition and hydration) is not permissible unless the person has previously expressed a clear and competent preference regarding such withholding or withdrawal. AAIDD believes that determination of the person’s previously expressed preferences should follow the legal standard of “beyond a reasonable doubt” in this situation.
4. The legally determined next of kin (parent, spouse, etc.) or court-appointed guardian is authorized to make treatment decisions when the person is not able to make these decisions directly.
5. Judicial review is appropriate and necessary when application of this policy is unclear or in dispute among health care providers, family members, guardians, friends, and other significant caregivers.

B. Physicians should always act in conformity with existing codes of medical ethics, existing state and federal laws, and their conscience. Physicians also need to be familiar with the medical and social issues related to individuals with IDD or use consultants with this type of expertise to guide their care.

1. Physician-assisted suicide (PAS) is opposed by the American Medical Association and is illegal in the vast majority of states. Physicians must not provide PAS to persons with IDD in states where it is illegal to do so. Where it is legal, physicians must follow the legally specified procedures in their jurisdiction. Application of those procedures must also be consistent with the principles outlined above. Even if it is legal, physicians cannot be compelled to provide PAS if it is against their conscience to do so. 
2. Active voluntary euthanasia is different from PAS and is illegal everywhere in the United States. In PAS, a physician provides a fully competent person with the means to terminate his or her own life. In active voluntary euthanasia, the physician or some other agent terminates the person’s life directly. Active voluntary euthanasia is never permissible. 
3. Individuals choosing PAS must be legally competent, when this procedure is legal. Surrogates cannot choose PAS for another person. Any attempt by another person (such as a parent or health care provider) to choose PAS for a person with IDD is not permissible.

C. Public policy should be developed to reflect the principles enumerated above.

Adopted by the AAIDD Board of Directors on July 11, 2012, and extended without revision on January 29, 2020.

References:
Botsford, A., & King, A. (2005). End-of-life care policies for people with an intellectual disability: Issues and strategies. Journal of Disability Policy Studies, 16, 22–30.

Friedman, S. L., & Helm, D. T. (Eds.). (2010). End-of-life care for children and adults with intellectual and developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities.

Kingsbury, L. A. C. (2009). People planning ahead: A guide to communicating healthcare and end-of-life wishes. Washington, DC: American Association on Intellectual and Developmental Disabilities.