Having Dementia Wishes Followed

(Lamar Hankins is an associate exit guide, volunteer speaker for Final Exit Network, and co-founder of The Good Death Society Blog.)

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A recent essay in the New York Times by cardiologist Sandeep Jauhar questioned whether his father’s wishes about end-of-life care should have been followed after his father developed dementia. After all, Jauhar writes, “Whose wishes for his medical treatment were we to honor? Those of my father back when he was a healthy, highly functioning geneticist? Or those of the simpler, weakened man my father had become?”

Jauhar reasons that his “father didn’t seem unhappy” in his advanced state of dementia, so what should it matter that he had expressed his wish not to live in a state of dementia until he had a natural death from some condition that could not be treated successfully?

Jauhar seems to think it is acceptable to pretend that someone is competent to make decisions when that clearly is no longer true. His argument is that if a person who did not want to live far into dementia appears “happy” in their incompetent mental state, then their previously stated wishes should not be honored. Yet, there is no empirical evidence that appearing happy means that a person with dementia has changed their mind about end-of-life care, in spite of the fact that they no longer have the mental capacity to change their mind.

Reasoning such as Jauhar’s undercuts the entire purpose of advance directives. When my father was diagnosed with Alzheimer’s, he understood what would happen. In his view, he would be cared for, perhaps in a residential facility, until his death. His experience and worldview did not offer an alternative. We felt obligated, morally and legally, to honor his decision and he was, by all appearances, happy until two days before his death. He always greeted people with “hey fella” or just “hey there,” with a smile, though he did not know who the visitor was. Perhaps he was aware that they were someone he knew, but we could not know that because he could not tell us given his lack of mental capacity fifteen years into Alzheimer’s.

Jauhar seems to view with indifference his father’s wishes. He wrote, “What was meaningful to my father in 2004 was very different from what had become meaningful to him in the past few months, when watching TV, spending time with his caregiver and children, and even just eating a spoonful of ice cream had clearly given him genuine pleasure.”

There is no way Jauhar could know what was meaningful to his father at that point in his life, or that anything was meaningful. All Jauhar could do was project his own values onto his father. In fairness to Jauhar, his father did not have an extensive advance directive that dealt fully and clearly with dementia. His father had written only that “if he or [his wife] were to get ‘very sick,’ neither would want extraordinary measures taken to keep them alive. ‘We want to live only if we have a meaningful life.’”

Jauhar sees an ethical dilemma in carrying out wishes with which he disagrees. But there should be no ethical dilemma in honoring any legal wish of another person. Jauhar writes, “His [father’s] world had shrunk, but so too had his desires, his perspective, his expectations of what constituted a worthwhile existence. The man who’d craved recognition and respect more than anything else no longer seemed to care about those fickle rewards. To my brother, our father was no longer the person he once was. To me, he was still the same person, just a changed one. In the end, after much debate, my brother, in conjunction with a hospice nurse, made the final call to honor my father’s advance directive, which is the goal in palliative care. We stopped the IV fluids and did not start antibiotics. Our father died at home a few days later.”

Jauhar describes his father as a weakened and simpler man. However, such shallow and one-dimensional views ignore the reality that those with dementia usually lose not only memory, but attention span, ability to communicate, reasoning, judgment, foresight, and ability to problem-solve. Failing to acknowledge this degree of loss of brain function allows Jauhar to rationalize about what his father wanted for his death after dementia rendered his brain unable to function as it once did.

One way to thwart such rationalizations is to complete a supplement to the regular healthcare advance directive that deals specifically with dementia. Learn about Advance Directives for Dementia here. The supplement that FEN developed provides that when a person with dementia who has completed the directive does not “recognize . . . family members, loved ones, and friends; . . . cannot remember their names; or [is] not able to communicate well enough to make clear whether [they] recognize [their] friends and loved ones or remember their names,” in the opinion of their healthcare representative, then the directive will take effect.

This point in one’s dementia is referred to as “My Chosen End Point.” The person’s wish at this “Chosen End Point,” as provided in the directive, is “to die quickly and peacefully” by Voluntarily Stopping Eating and Drinking (VSED) and by stopping “any medical treatment that would serve only to postpone . . . death, including, for example, vaccines, antibiotics or other antimicrobial drugs, antiarrhythmics, cardiopulmonary resuscitation, blood transfusions, or any artificial or mechanical means of life support.” It is important to note that a VSED death is due to dehydration. The most universal unwanted symptom is extreme mouth dryness. This condition can be relieved by caregivers providing diligent and frequent oral care with limited moisture from ice or from products that reduce or eliminate the condition.

Where a dementia directive’s language is clear, the request is unequivocal, and a facility will not honor it, Final Exit Network may provide legal support to try to enforce the directive. Further details can be found at FEN’s website. More detailed information about VSED can be found on FEN’s website and blog, at the Compassion & Choices website, and in the book Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, published in 2021.

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.