(The author practiced gynecology for 35 years. Since her retirement in 2015, she has volunteered with the Village to Village network and Compassion and Choices. She does outreach education about California’s End of Life Option Act and Advance Health Care Directives, and helps people find a doctor who will prescribe Medical Aid in Dying. She lives in Paso Robles with her husband and two Border Collies. – Jay Niver, editor)
Every time I give a talk about the End of Life Option Act (EOLOA), people ask if they can use it to prevent themselves from slipping into profound dementia. Unfortunately, the answer is no.
The EOLOA has several requirements: to use it you must be 1) of sound mind 2) within 6 months of death 3) an adult 4) a California resident 5) able to take the lethal medicine yourself. Those first two requirements make it unusable for dementia, because dementia has a long, slow course, and you lose your “sound mind” years before you are six months away from death.
I am determined not to end up profoundly demented. I do not want the final chapter of my life’s story to end with me as a “shell” of a person, unable to feed myself, unable to toilet myself, and unable to recognize close friends and family. I am determined not to be a huge several-year burden on my husband, if he were to try to care for me at home. I am also determined not to end up in a nursing home spending a lot of money to keep the shell of my former self alive. Medicare does not cover long-term nursing home care, so what many people have to do is spend all their savings until they are poor enough to be eligible for Medicaid (‘Medi-Cal” in California).
My shell wouldn’t be able to talk or to understand others, wouldn’t be able to have relationships, wouldn’t be able to contribute to the community. My shell wouldn’t be able to care for itself, feed itself, go to the toilet by itself. My shell wouldn’t know who I was or where I was. My shell wouldn’t be able to make any decisions – or even understand what a “decision” is.
I say “No thank you” to that as my final chapter.
It seems to me that I need two things if I want to avoid ending up as a profoundly demented shell of a person. First, if I develop dementia, I need some guidepost – some sign – that will warn me when I am getting close to becoming more demented than I want to accept. Second, I need an exit strategy to use when I meet that guidepost.
The choice of a guidepost is very personal. Here are some possible examples:
- when I can’t read any more
- when I don’t know my children’s names
- when I can’t remember what a checkbook is for
- when I can’t remember how to use my cell phone
- when I can’t tell time any more
These are just examples of possible guideposts. I can choose whatever is important to me. I wouldn’t like to choose anything that happens in very early dementia, because that would deprive me of some time on Earth that might be enjoyable. Neither would I want to choose anything that happens in a very late stage of dementia, because if I am too deeply demented, I might forget what I had intended or be unable to carry out my plan.
I have been a musician for all my adult life, so my personal choice of a guidepost is this: If I look at a page of music and I say to myself, “I used to know what all those little lines and dots meant, but now I can’t remember what they are for.” (Note: I don’t mean “if I can no longer read music.” I mean, if I can’t remember what the dots and lines are actually for.)
If I become demented and I meet that guidepost, it will tell me that my brain is slipping away, and it is time to implement my exit strategy. I hope I have chosen my guidepost wisely and that if I couldn’t remember the meaning of all those dots and lines, I would still have the ability to implement my exit strategy.
What is an exit strategy? It is a way to end my life that is certain to work, that is painless, that won’t get my friends or family in trouble, and that doesn’t make too much of a mess.
Exit strategies like jumping in front of a train, jumping from a great height, using a firearm, or taking poison are off my personal list – they don’t fill these requirements
A widely used method that meets all these prerequisites is Voluntarily Stopping Eating and Drinking (VSED). This sounds horrible to me now because I am healthy and have a good appetite, but people who are using it, who are still awake to talk about their experience, say that it is difficult but not painful. VSED is legal. No one has the right to force me to eat or take fluid, so my family won’t get into trouble. Many hospices will provide palliative care once I have shown that I am firm in my intention. In addition, VSED gives me the opportunity to say my goodbyes if I want to do so. Because VSED requires determination, it is a method that is only likely to end successfully if my family or caretakers, my appointed healthcare surrogate (or proxy), and my primary care physician or hospice are all supportive.
A different version of VSED is to write specifically in my Advance Directive that if I am unable to feed myself, I instruct my caregivers not to hand feed, tube feed, or force feed me. An advantage of this method is that it is applied only when my dementia becomes so profound that I can’t feed myself, so it is unlikely that I would be depriving myself or quality time on Earth. Some disadvantages of this method are: First, that it is not a settled area of law, so it is not clear that the courts would support this part of the Advance Directive; and second, that it would require a medical surrogate/proxy who was completely determined to carry out my wishes.
Final Exit Network (https://finalexitnetwork.org) has a discussion of both versions of VSED, suggestions for wording the Advance Directive (Supplemental Advance Directive for Dementia Care), and a Surrogate Consultant to help my medical surrogate navigate these tricky and poorly charted waters. Their website has a lot of information under the “services” and “resources” tabs.
Other exit strategies are discussed on the websites https://www.peacefulpillhandbook.com, https://www.finalexit.org, and https://compassionandchoices.org. Some books I have found interesting include Voluntary Stopping of Eating and Drinking by Timothy Quill et al; Choosing to Die by Phyllis Shacter; Finish Strong by Barbara Coombs Lee; The Peaceful Pill Handbook by Philip Nitschke and Fiona Stewart; and Final Exit 2020 by Derek Humphry. All are easily available by Googling. YouTube also has several videos about VSED that can be found by typing “VSED in progress” in the YouTube search bar.
Great piece, Susan. Your description of becoming a “shell” with dementia is so true and so sad. The people I counsel about dementia have a “fear of missing” out on any valuable time with family and friends, so they don’t want to Exit too soon. However, if they wait too long, it’s too late to be proactive. It is a balancing act that no one wants. Shining a light on the issues around dementia is one way to show people they are not alone and have options. The more people use the VSED option, the closer we come to having laws that support people and surrogates who choose this option.
LIFE-ENDING DECISIONS
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A very smart woman, in my opinion. I totally agree with you, Susan. Thank you for writing it. How on earth people can have enormous compassion for animals ….yet allow themselves and love ones to suffer terribly is beyond me. I know religion plays a large part to some….but others just feel “it will work out” or a vague hope they will be “OK”. Yikes! I have my beloved Nitrogen, etc in the basement.
Suffering is highly subjective. For some, it means losing the ability to be physically active, to read and process new information, to recognize loved ones, etc. For others, it means not giving in and trying everything, and only throwing in the towel when pain cannot be controlled. And even then, that does not necessarily mean self-inflicted or medically-assisted suicide, or VSED.
Thanks so much for this, Susan. I really appreciate your comments on one’s personal guidepost for knowing when it’s time to exit. Although my Advance Directive does direct that my surrogate prevent me being fed or hydrated if I have become the “shell” of myself, I need to revisit my stated guidepost, especially because it is very important to me that I take action on my own before I reach that point. I’ve been involved for over 20 years in an Alzheimer’s Disease study at the Mayo Clinic, entering it long before my mother’s dementia became apparent. After my annual visit to Mayo, they send me a letter, which so far has always said they see no sign of dementia. I’ve thought my guidepost would be if/when the annual letter says they do see signs of it, but I probably need to think further about a guidepost later in the disease process, while not too late.
Thanks, Susan, for the helpful “guideposts.” The Mayo clinic has a list of the top ten symptoms at https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013 Under change of personality, one of my guideposts is loss of sense of humor…
Excellent article. I am 93 and aware of my worsening cognitive powers. Fortunate, all my children are supportive of VSED. It’s difficult to choose an exit trigger in advance. Your article reminds me I should not procrastinate. Thank you.
Thank you for this excellent perspective. I have arrived at many of the same conclusions and strongly agree that both a clear written advance directive AND a strong, able and intelligent health care agent are critical. Given what we now know about the practical limitations of advance directives in actual medical practice, the advocate is perhaps the most important component! One suggestion: even if you designate a health care agent, consider meeting with the agent AND a local elder law attorney and secure the commitment of the attorney to work as a legal advocate alongside your health care agent in the event that the agent needs or wants legal support to effectuate your wishes. On the issue of “guideposts,” I think that a thorough assessment of guideposts would be an interesting and useful subject for another posting and I hope that you will write again and address the subject in greater detail. Finally, re: VSED, it appears to me to be quite common, particularly for people (often senior citizens) who are dying due to what is termed “failure to thrive.” Some simply stop eating and drinking and hospices frequently respect this choice. I just experienced this with an aunt, who died three days ago under hospice care at a nursing home, and although she didn’t have an advance directive indicating that she would ever consciously undertake VSED (I’m sure she had never heard the term), she stopped eating and drinking and the hospice did not try to intervene by forcing her to eat or drink. I wonder, though, whether VSED is a good “default option” for anyone with advanced dementia: other methods of self-deliverance seem more practical and effective to me.
I think Susan Robinson is wildly optimistic. Her guideline cues seem way past the moment when a strategy for a peaceful exit can be implemented. If you are at a stage where you don’t know your children’s names, will you really have the mental toughness and perseverance to stick to VSED?
Have you ever done a fast for seven days, when you are free to drink at will? Have you ever tried to go two days without liquid? I have done the former, and it was uncomfortable indeed. I have taken long hikes into wilderness when conserving water was important, and that was hell of a lot harder, even though limited water was available.
Depriving one’s self of food and drink until death arrives, while mentally challenged? Hardly a peaceful prospect and is it likely to succeed? And it seems to me to be a route that would anguish your loved ones if they were with you in the process.
One thing is, it is not easy to get legit Nembutal nowadays …