Voluntary Stopping Eating and Drinking: A New Frontier in Dementia Decision-Making

Last month I wrote about a new breed of advance directives specifically designed for people with late-stage dementia. This month, I want to shed light on a specific care decision for people with advanced dementia that is making its way into some of these documents and into end-of-life conversations. This care decision is VSED: voluntary stopping of eating and drinking.

While VSED is considered legal for terminally ill patients who have decision-making capacity, its legality is an open question for individuals lacking such capacity (such as severe dementia patients) according to Thaddeus Pope, a legal scholar, and bioethicist at Hamline School of Law (who has also compiled a list of VSED legal resources).

Nonetheless, there has been a good bit of activity in this area over the last several years, and this movement will only grow, so it seems worthwhile to explore it.

People with advanced Alzheimer’s disease and other severe dementias almost always develop eating problems. First off, most lose the ability to feed themselves. (They aren’t cognizant enough to do so and need to be fed by others.) Many also develop difficulty swallowing. (They lose their swallowing reflex, becoming prone to choking and aspirating (breathing in) their food, and can easily develop pneumonia from the food bacteria in their lungs.)

The noncontroversial piece about feeding people with severe dementia — or what should be noncontroversial — is the decision about artificial food and hydration, which means feeding someone through a tube that’s surgically inserted into the person’s stomach.

Artificial nutrition is no longer medically recommended for people with severe dementia. Studies have found that inserting a feeding tube actually does not prolong life (because the tubes create medical complications of their own), in addition to creating unpleasant side effects for the patients. In 2013, the Choosing Wisely campaign first advised against tube feeding for patients with severe dementia, a position developed in conjunction with the American Academy of Hospice and Palliative Medicine and the American Geriatrics Society. (Note: old habits sometimes die hard in medicine, especially when there is a financial incentive to physicians and institutions to conduct this procedure. Research also shows that for-profit hospitals and are much more likely to insert feeding tubes into patients with advanced dementia.)

The more controversial piece about nutrition and hydration is how and whether people with severe dementia want to receive nourishment without the use of a feeding tube.

In the past few years, some folks have begun expressing their wishes now about eating and nutrition when/if they develop late-stage Alzheimer’s or other dementias. Some of these folks are choosing VSED as a way to retain control over the quality of their life and how they want to die. (See these articles in the popular press in the past few years.)

One of the new dementia-specific advance directives that I profiled last month — the “Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia” from End of Life Choices New York — offers a new and detailed set of thoughts and choices around food and hydration. It introduces two approaches to patients for thinking about eating if they develop advanced dementia that are alternatives to the current practice (and instinct) of cajoling people to eat or downright forcing food into their mouths. These approaches are “comfort-focused” feeding and “no hand-assisted feeding.”

With “comfort-focused” feeding, the individual wants other people to feed them (“hand-assisted feeding”) as long as the individual appears to enjoy eating and is not in any way forced to eat. More specifically, the directive states that the individual wants to be hand-fed only:

• If they “appear receptive and cooperate”
• If they “show signs of enjoyment or positive anticipation of eating and drinking.”
• If they are “fed foods that they appear to enjoy, in any texture they prefer, and in whatever amount they readily accept.” This issue of food texture is actually quite significant. Because people with advanced dementia are prone to choking (many have lost their swallowing reflex), they are often fed only pureed food which can be swallowed more easily. But pureeing food also makes it much less palatable and can remove much of the joy of eating.)
• If “feeding stops once they no longer willingly open their mouth or appear indifferent to being fed, or spit out food or fluids. And if they are not coerced, cajoled or in any way forced to eat or drink.”

The other option offers a less nuanced approach to nutrition with advanced dementia. With “no assisted hand feeding” the individual does not want to be fed by hand even if they “appear to cooperate in being fed by opening my mouth.” This is clearly an approach to use feeding as a way to control their own life, and death, most directly. Individuals choosing this approach feel that living with a mentally debilitating disease, especially at the point at which they can’t recognize others and can’t feed themselves, is untenable for them. They feel that their purpose for living has gone.

Even if an individual and their family are comfortable with an instruction for “no assisted hand-feeding,” patients may run into barriers from the medical community at this point. Not all physicians, hospitals and nursing homes are comfortable today with this level of “not feeding,” or as some would say “withholding” food and hydration, or what some call “self-starvation.” There is quite a range of views on this, even among physicians in the medical community who are staunch advocates of patient self-determination at the end of life.

While remaining controversial, VSED will move further into our advance directive and advanced care planning over time. Expect that we will see more of it and that your clients may begin to talk about it.

Randi J. Siegel, MBA, is the President of DocuBank® (docubank.com), which ensures that the emergency information and healthcare directives of its 250,000+ enrollees are available 24/7/365 through the largest advance directives registry in the U.S., as well as access to an online safe for storage of digital assets and other vital documents. Working with estate planning professionals since 1997, Randi frequently speaks at national estate planning conferences and has appeared on radio and television as an authority on registries. A member of the Philadelphia Estate Planning Council, the International Society of Advance Care Planning and the Coalition to Transform Advanced Care, Randi is active in health education and public engagement related to advance care planning/advance directives. She serves as Pennsylvania liaison to the National Healthcare Decisions Day initiative and as a board member of the Center for Advocacy for the Rights and Interests of the Elderly. Randi is an ongoing contributor to the Academy blog.

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