The Choice Dementia Takes

Medical aid in dying — we use the acronym MAID — is now legal in 14 states, including CA, as well as the District of Columbia. It allows a dying person, working with physicians and under strict safeguards, to choose the timing and manner of death rather than endure prolonged suffering. Most Americans support that option, especially when someone is suffering from advanced cancer, heart failure, or another incurable disease. They see it as an act of compassion that allows a person to die with dignity. People’s opinions do differ based on age, religion, political affiliation, and educational level.

But a more difficult question is now confronting physicians, lawmakers, and families: Should medical aid in dying also be available to people with dementia? For many people, death itself isn't the greatest fear. It's losing memory, personality, independence, and ultimately the very identity that makes them who they are. Alzheimer's disease, Lewy body dementia, and other forms of dementia are terminal illnesses. No one gets better. There are no good treatments. Over time, they rob people of the ability to recognize loved ones, make decisions, communicate, and care for themselves.

Today, people with dementia are almost always excluded from medical aid in dying because the law requires that patients have decision-making capacity when they request it. The legal process takes a while, so by the time many people meet all of the requirements, the disease has already taken away their ability to choose.

Critics raise important concerns. How can doctors be certain someone with dementia truly understands such a life-ending decision? Could exhausted caregivers or family members subtly pressure a vulnerable patient? Could the enormous cost of long-term dementia care influence these decisions? Those are legitimate worries, and they deserve to be taken seriously.

But these concerns argue for stronger safeguards — not for denying someone the choice.

Physicians already evaluate decision-making capacity every day. We determine whether patients can consent to surgery, refuse chemotherapy, or sign complex legal-medical documents.

Let’s say a person, while still capable, repeatedly says they do not want to endure the final stages of dementia, and they document that wish in an advance directive. As the disease progresses, and if their current condition is supported by independent medical evaluations and if it is felt to be free from coercion, then their earlier wishes should be honored.

Medical aid in dying should never become a substitute for good dementia care. And it should not be a support for families or help alleviate the burden of health care costs. Those would be ethical failures.

But neither should a diagnosis of dementia automatically strip someone of the right to make one of the most personal decisions of their life. People with terminal dementia deserve the same respect for their autonomy — and the same opportunity to die with dignity — as people facing any other terminal illness.

What are your thoughts about this question? If a person, while fully competent, repeatedly says, "I never want to live through the final stages of dementia," should we honor that decision as their disease progresses — or ignore it because the disease has taken away their ability to repeat the decision?

— Dr. Michael Wilkes with a Second Opinion

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