Caring at the End of Life

Purpose and Scope

The purpose of this Position Statement is to identify and to articulate foundational principles to guide care at the end of life for people with intellectual or developmental disabilities.

End of life refers to a period in which individuals with life-threatening or life-limiting conditions are anticipated experience death soon. Individuals may be considered to be at the end of life when they have a condition that is progressive and irreversible, such as late-stage Alzheimer disease or terminal cancer, or functional impairment where improvement or recovery is not expected, and withdrawal of life-sustaining treatment is under consideration. In addition, life may come to an end suddenly and unpredictably (for example from a fatal injury), in which case the details expressed here may not apply, although the basic principles will pertain.

In contrast, individuals are not at the end of life (a) who have 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 or (b) who are in a “minimally conscious state.”

Ideally, discussions with the individual about their care should begin before the last 6 months of life. These discussions should attempt to find out what choices the person would want made in different end-of-life situations. The discussions should be general enough to cover most situations yet specific enough to provide practical guidance. Legal or other professional assistance should be used to  develop living wills, health care proxies, durable powers of attorney for health care, health care directives, and other instructions, and they should be updated periodically and take into account medical advances, technological improvements, and changing perspectives during one’s lifespan.

Position

End-of-Life care for people with IDD should adhere to the four major principles of human rights-based approaches to care: (A) Dignity, (B) Respect for Autonomy, (C) Life, and (D) Fairness. These principles are explained below as related to end-of-life care.

A. Dignity: All human beings are equally valuable and deserve dignity and respect consistent with their humanity. A person’s life, nor quality of life is not related to the type, degree, or severity of disability. Their innate value persists from birth to death, even though their quality of life may change as one approaches the end of life.

1. The mere presence of IDD, or likelihood of having a disability in the future, does not make a person’s life less valuable. 
2. Having a disability is not by itself a form of suffering. People without disability who fear acquiring a disability must not assume that their feelings are shared by those who are living with a disability.

B. Respect for Choices: 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 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. Respect for Autonomy: Attempts should always be made, as much as possible, to discover the wishes and desires of the person with IDD and to honor those wishes.

1. People should be encouraged to express their preferences about care, and those preferences should be documented.
2. People can express their preferences through verbal and/or nonverbal communication, and careful observation and interaction over time often clarifies what a person with IDD values as being important. Those who are closest to the person are best able to identify the person’s preferences when they are unable to express them directly.
3. Even people whose legal competence is challenged may have the capacity to express preferences about their health care and those preferences should be respected to the greatest extent possible.

D. Life: In general, caregivers should act to promote and protect the life of the person with IDD.

1.  “Best-interest” is the typical standard used in making decisions about treatment to promote and protect life. Typically, the person determines what is in their own best interest, and when that is not possible, others may do so following legal procedures determined by their jurisdiction. 
2. Absent the person’s previously expressed preferences, AAIDD recommends following the “beyond a reasonable doubt” standard. That is, unless the person has previously expressed a clear and competent preference regarding withholding or withdrawing life-sustaining treatment (including nutrition and hydration), it is not permissible to do so.
3. There are legal and ethical considerations of when continued life may not be in the person’s best interest, for example, when life-sustaining treatment will only prolong the process of dying and suffering with no prospect of reversing it; the person is in an irreversible coma or permanent vegetative state; or treatment would impose excessive pain and suffering. 
4. People of faith may believe that forgiveness, reconciliation, peace, or eternal life with God is more important than their continued life on earth. Any judgment about the person’s religious or spiritual preferences should be made by the individual or their loved ones rather than by health care providers.
5. Physician-assisted suicide (PAS) is opposed by the American Medical Association and is illegal in the vast majority of states. Surrogate decision-makers cannot choose PAS for another person. Any attempt by another surrogate to choose PAS for a person with IDD is not permissible.

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

1. Public and private health insurance should cover necessary treatment in the most appropriate context, taking into account the person’s preferences. People should not be required to live in a more restrictive setting than they require to get care than could be provided in their own home.
2. 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.

Adopted by the AAIDD Board of Directors
May 13, 2026

Previous version adopted July 11, 2012 and January 29, 2020.