Bill Simmons is a retired attorney who specialized in environmental, corporate, and real estate law. He is an adviser and former board member of Hemlock Society of San Diego. For more than 15 years, he’s taught and is still teaching end-of-life issues.
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According to the Alzheimer’s Association, over 7 million Americans have Alzheimer’s disease, the major form of dementia. There may be as many as a million more who have another form. The total would be the population of the state of Washington. Most dementias progress until death, and there is still no cure for most.
It is important to understand that people with early dementia still function well. They have decisional capacity, especially to about their own health. This must be a million souls or more. But they know that sometime they’ll permanently lose capacity. For many, their personality will change so much that they will be a different person. Most will eventually not recognize their family.
Many people today “don’t want to go there,” and are instead inclined to choose an early death. There are three options. The first choice is to end life before capacity is lost. There are two ways to do this. Most choose to voluntarily stop eating and drinking (called VSED), which takes a few days to two weeks.
Another method of dying early is to inhale an inert gas. Instead of days, death comes in a few minutes. If one qualifies, Final Exit Network gives information on this method. Either way, the choice gives up some good years.
It is important to understand that no state has a law against VSED or suicide in general. But almost all states have laws that make it a crime to help someone to end their life.
After capacity is lost, there are two choices. Most will direct their agent and family to take steps to prevent any treatment that would extend life; this is the second choice. For example, an advance directive could say, “If I suffer cardiac arrest, don’t treat it, but let me die.” There is no problem legally with such a directive; several forms are available.
The third choice is not so easy. The advance directive is that the agent, presumably with the help of the family, is to withhold food and fluid until death comes from dehydration. This is called SED by AD (Stopping Eating and Drinking by Advance Directive). SED by AD is thoroughly discussed in the primary treatise on SED, Voluntarily Stopping Eating and Drinking, A Compassionate, Widely Available Option for Hastening Death (Oxford University Press, 2021). Its four editors are a doctor, a nurse, a philosophy professor, and a law professor – all well known in the right-to-die movement.
Does the agent have the authority to institute SED by AD? The law professor, Thaddeus Pope, says at least three states do allow this: Nevada, Vermont, and Arizona. At the other end, Iowa declares it unlawful. What about the remaining 46 states? Does the agent have such authority, or is the agent committing a felony, namely assisting suicide or even murder?
In these states the law is not clear. No statute allows it and none prevents it. There are no court decisions. If there were litigation, the issue may well be decided by the answer to this question: Are food and fluids medical treatments that an agent has authority to withhold, or not?
Professor Pope argues that they are. Some doctors say they are not, except for certain diseases unrelated to dementia.
From the point of view of someone with early dementia (capacity has not been lost yet), which of these three choices do I take? The big question is: How many good years do I wish to give up? Do I take my life early, perhaps leaving good years on the table? Or do I wait until I lose capacity, when I can either limit treatment that might extend my life, or, in addition, at some point, direct my agent to institute SED by AD?
Until now, there has been no form of advance directive that put these questions squarely in front of the person with early dementia. That is, there has been no directive designed for just this group.
Last July, I published such a form on my website. Extensive instructions discuss the three options. The form makes it possible for the principal to choose either or both of the second and third options above. Of course, no directive is needed for VSED.
If you know of someone with early dementia, be sure to let them know that they do have these choices.
(Editors’ Note: The FEN website also has information about Advance Directives for Dementia.)
(Please scroll down to comment, and feel free to share our blog posts with others who may benefit from them.)
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.
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Thanks for sharing this important information.
All,
I’m soon to receive a description of the results of a memory test I took in Jan 2026. So this article arrives at just the right time. I have just started a musical project and would hate to give it up, but will to avoid the horrors of dementia.
Mike
Bill – Thank you for providing this very helpful outline. For myself, I feel that an option for SED by AD is not only a way of avoiding the problem, it tosses the problem, which is a tremendously fraught one, to someone else. This is completely unfair to that person, as well as unfair to yourself. If one truly believes that it is unacceptable to finish out one’s life in a demented state, as I do, which is easy to say if you don’t have a current diagnosis, the ethical solution is to take responsibility for ending one’s life upon one’s self. It is unfortunate that society does not provide compassionate options for doing this and that potentially good months must be sacrificed, but that does not absolve one of the responsibility.
Thank you for this critical information, Bill. I will share it with my care management colleagues at Aging Life Care Association.
The SED by AD is new information to me. How does MAID fit in? You don’t mention it.
I agree with Doug. Being present for a dying loved one is challenging enough; more so if it’s your first time at a bedside. It becomes dreadfully more complicated and stressful when you’re asking another to decide if and when to kill you. From a friend whose husband chose VSED, I learned it was quite an ordeal, despite having a community of supportive friends to help in caregiving, and a husband who was alert and competent. Asking someone to make the SED by AD decision itself is troublesome and to go it alone if unable to find an agreeable group to help is asking a great deal. In my opinion, asking too much.
Linda – MAiD is not available to dementia patients. MAiD requires both decisional capacity and a terminal diagnosis where death is expected within six months.
Thank you. MAID would be in the same category as VSED then, in the sense of having capacity to make the decision and taking action early enough.
Linda – MAiD is not part of the discussion. Bill has outlined the options available to someone diagnosed with dementia. VSED requires determination and fortitude over a two-week period of time, perhaps longer. A person with dementia who chooses VSED would need to consider this challenge in the context of the expected progression of their disease.
Doug and Linda. I understand your concern about someone passing the buck for a decision that is hard to make just for the self, and much harder for the agent after capacity is lost. SED by AD is not for me, but it is evident (other forms and some literature) that some people are interested in SED by AD. So, while I agree with you, there is a growing need for a form specifically designed for people with an early diagnosis of dementia. And this form, to be most useful, needs to DISCUSS ALL OPTIONS for those so diagnosed, and all options means there is, in most states, risk to the agent and others involved. Bill Simmons