Despite the needs for people with disabilities to plan for times of serious illness in order to receive good end-of-life care and to have their wishes respected, this community has often been overlooked in the extensive research, programs, and policies regarding advance care planning and palliative care. This article reviews the literature addressing the significance of disability on health care decision-making, advance care planning, and end-of-life care. Special attention is provided to assessing the life values or preferences of persons with intellectual disability with limited decisional capacity. Recommendations are suggested for more inclusionary dialogue, research to better inform palliative care services, and new planning models for individuals with limited capacity.

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A significant number of hospices in U.S. jurisdictions where medical aid in dying is legal have implemented policies that require nurses to leave the room when a patient ingests aid-in-dying medication. Two questions with ethical implications arise from these policies: (1) Is it ethically supportable for a hospice to require that staff leave the room while a patient ingests aid-in-dying medication? and (2) Does this requirement compromise the nurse's professional commitment to the patient and family? This article reviews the origins of this common policy, as well as nursing codes of ethics and professional organization policy statements as they relate to nursing commitments to patients. It finds that an institutional policy requiring nurses to leave the room while a patient ingests aid-in-dying medication risks violating professional nursing standards, reinforces stigma regarding medical aid in dying, and potentially abandons patients and loved ones at a critical time in their passage toward a desired and legal death. The authors describe a case that depicts these three potential risks, concluding that even if such policies are not legally prohibited by state aid-in-dying statutes, hospices should eliminate them or at least be transparent about the practice and its rationale before accepting patients who request medical aid in dying.

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