Principal Investigators: Nancy Berlinger and Mildred Z. Solomon

Funder: Robert W. Wilson Charitable Trust 

In America’s aging society, it is time to explore foundational questions associated with dementia and the concerns of persons facing this terminal condition. This two-year project – one of several planned projects on dementia – is reviewing the ethical, legal, and clinical landscape in the United States concerning end-of-life choices in relation to the dementia trajectory and the foreseeable loss of decision-making capacity that is part of this condition.

Dementia is an age-associated condition that typically spans four-to-eight years from diagnosis to death, although it may last much longer. Some brain changes associated with dementia can be identified before the onset of symptoms via biomarkers detected through neuroimaging or other tests.

During the dementia trajectory, a person experiences progressive impairment of cognitive abilities – including memory, problem-solving, and language – as well as changes in behavior and physiological functions. As cognition deteriorates, a person with dementia will need daily assistance and eventually total care, often in an institutional setting, for several years before physical deterioration progresses to death from pneumonia or another condition associated with severe dementia. There are no effective treatments to cure or halt the progression of dementia. Alzheimer’s disease, the most common form, is the sixth leading cause of death in the U.S.  Vascular dementia, the second most common form, may develop following stroke.

In 2018, 5.7 million Americans were living with dementia. An estimated 12 million others will be at high risk for developing dementia over the next 30 years as the baby boom generation lives into their 80s and 90s.

In the U.S., the basic legal right to be free of unwanted treatment is long established. People with decision-making capacity have the right to forgo life-sustaining treatment they do not want. People who lack decision-making capacity have the same right through the use of an advance directive or a surrogate decision-maker. However, this longstanding legal framework and ethical consensus does not fully reflect the situation of a person facing dementia if this person has no medical treatments to refuse. Also, the timeframe in which a terminally ill person with decision-making capacity can request and use medical aid-in-dying (MAID), now legal in nine U.S. jurisdictions, does not correspond to the dementia trajectory.

Through literature review and workshops, a Hastings Center work group will conduct an ethical analysis of choosing when to die in the context of dementia, identifying areas where further research or policymaking is needed. In exploring these emerging issues, the work group will also consider how the field of bioethics should contribute to research, policy solutions, and public understanding to improve the experiences of living with dementia and caring for people with the condition. Products will include a special report, to be published in 2021.

This project is made possible by a major grant to The Hastings Center from The Robert W. Wilson Charitable Trust as part of its visionary support for the Center’s research and public engagement on ethical challenges facing aging societies.