Bioethics Forum Essay

Four End-of-Life Options to Avoid Living with Advanced Dementia

New laws on medical aid in dying recently took effect in Illinois and New York. They join 12 other jurisdictions in the United States that permit terminally ill patients with decision-making capacity to obtain lethal medications to hasten their death. But while there is increasing support for MAID, this end-of-life option is of little use to people who want to avoid living with late-stage dementia; they don’t meet the qualifications. To honor their autonomy and self-determination, we must examine other end-of-life options that are emerging.

With over seven million Americans suffering from Alzheimer’s disease, the most common form of dementia, it is understandable that many wish to avoid its advanced stages. But when they retain the decision-making capacity needed to request MAID, they lack the required six-month terminal prognosis. And by the time they are terminally ill, they lack the required capacity.

But four other options can help these patients achieve their goal. These options are being discussed by professional medical organizations and international media. While professional society guidelines and institutional policies and procedures are still being developed, these options—if pursued carefully—are legal and ethically responsible.

We recognize that many people with dementia and their families aren’t interested in these options and that many clinicians don’t support them. But clinicians and caregivers should understand them in the interest of staying informed and out of respect to those who fervently want to avoid living with advanced dementia.

Voluntarily Stopping Eating and Drinking

Voluntarily stopping eating and drinking is legal in every U.S. state and does not require a prognosis of six months or less. It is supported by major professional societies  in the U.S., United Kingdom, and the Netherlands, and there are guidelines specific to the American medical system. Published scholarship and clinical experience have shown VSED to be a compassionate and relatively peaceful way to hasten death, particularly when palliative care is provided.

The most common provider of good palliative care is hospice. While most patients with dementia who pursue VSED don’t initially qualify for hospice because they don’t have a prognosis of six months or less, a growing number of hospices now admit patients who have started VSED. The rationale is that most of these patients follow through with stopping eating and drinking, and those who do will die in well under six months. One hospice recently published its experience with 20 such patients. All completed the process, and they died in four to 23 days, with a median of nine days.

Some hospices object that the prognosis of these patients is caused by their choice, not their underlying condition. But a common hospice situation is similar. Many patients qualify for hospice by refusing life-extending treatment, such as chemotherapy or dialysis. Though some hospices may see the two situations differently, pursuing VSED with hospice support has arrived as an option.

VSED as a Bridge to MAID

Some patients in states where MAID is legal have used VSED as a bridge to qualify for it. If a patient stops eating and drinking, a clinician might certify the person as terminally ill within 24 to 48 hours. At that point, the person likely still would possess sufficient decision-making capacity to verbally request MAID. But whether the person qualifies depends on a state’s requirements.

Most states where MAID is legal require a person to make two verbal requests separated by anywhere from five to 15 days. But some states, like California, have only a 48-hour waiting period. And other states, like Hawaii and Maine, permit clinicians to waive the waiting period in urgent circumstances. In states with short or waivable waiting periods, this bridge to MAID is a viable option, whereas in states with longer waiting periods such patients usually lose capacity (or die) before they can make their second request.

An increasing number of clinicians are supporting some patients with dementia who want to use VSED as a bridge to MAID. But  this option requires more discussion and debate. For example, many clinicians are concerned that, although patients pursuing VSED will die within six months, their death would not be caused by “an incurable and irreversible disease” as most MAID laws require. And even if clinicians accept VSED bridge to MAID in principle, they must determine which nonterminal, seriously ill patients are eligible.

Minimal Comfort Feeding

People with end-stage dementia rely on caregivers to feed them food and liquids. The standard of care for these patients is to feed them on a schedule. But because this amount of food and fluid can sustain life for months or years, it does not meet the goals of those who want to avoid living with advanced dementia.

By contrast, with minimal comfort feeding (sometimes called responsive feeding), caregivers provide small amounts of fluid and food only in response to signs of discomfort, rather than on a schedule. Early unpublished case reports indicate that patients with advanced dementia who receive minimal comfort feeding die in several weeks.

While a protocol for carrying out minimal comfort feeding has been proposed, research on its implementation is just beginning. There are no official reports on the number of individuals who have received minimal comfort feeding, but public inquiries in the wake of growing media attention have increased.

The New York Times recently reported on a patient who received minimal comfort feeding in a private home with hospice support after her memory care facility declined to provide it. There is increasing support for this option from medical professionals and advocacy groups, including in two recent healthcare professional society surveys (here and here).

Advance Care Planning to Refuse Eating and Drinking

Consistent with the right to refuse life-sustaining treatment, refusing to eat and drink is a person’s legal right. By longstanding precedent, this right can be exercised for the person either by an advance directive or a surrogate decision-maker. Several directives for stopping eating and drinking have been published. But not providing any food and drink to incapacitated patients remains controversial.

Perhaps the most difficult challenge is posed by the then-and-now self: A patient, no longer aware of the directive, may indicate a desire to eat, and caregivers may feel obligated to satisfy it. How can they honor a patient’s wish without causing the person distress? What are the ethical considerations?

A new directive from the Northwest Justice Project offers guidance. An article about the directive includes direct comparison with nine other advance directives for stopping eating and drinking and addresses shortcomings of those directives. For example, it specifically prompts the patient to address palliative care options after eating and drinking have stopped.  

In addition, the Northwest Justice Project directive asks patients how they want to resolve the then-and-now-self challenge should they show a desire to be fed. The directive offers minimal comfort feeding as a backup. Even without a directive, we contend that minimal comfort feeding should eventually become the standard of care for patients with advanced dementia who have previously indicated to their surrogates that living with that condition would be unacceptable.

With its recent implementation in two populous states, MAID has been receiving significant academic and policy attention. But MAID seldom, if ever, offers an option to individuals with dementia who want to avoid living in dementia’s advanced stages. For them, and for the clinicians and caregivers who support them, the four emerging approaches described above are clinically feasible, legal, and ethically defensible. They need to be acknowledged and understood.

Thaddeus M. Pope, JD, PhD, is Professor of Law at Mitchell Hamline School of Law and a Hastings Center Fellow. @thaddeuspope.bsky.social,  LinkedIn: thaddeuspope

Hope A. Wechkin, MD, is Executive Medical Director of Post-acute Care at EvergreenHealth in Kirkland, Wa. LinkedIn: hope-wechkin-md

Robert C. Macauley, MD, is Professor of Pediatrics at Oregon Health & Science University in Portland.

Paul T. Menzel, PhD, is Professor of Philosophy Emeritus at Pacific Lutheran University, Tacoma, Wa.