(Lewis Cohen, MD, is a professor emeritus of Psychiatry and a Palliative Medicine researcher, who has received numerous literary and academic honors. He is a Guggenheim fellow and was a Rockefeller Bellagio scholar and a Bogliasco Foundation resident. He is a recipient of the Thomas and Eleanor Hackett Memorial Lifetime Achievement Award from the Academy of Consultation-Liaison Psychiatry and his research has been funded by NIH and the Robert Wood Johnson Foundation. As a medical student, Dr. Cohen studied under Anna Freud. He has been published in the Huffington Post, Slate Magazine, and the Atlantic, and is the author of several popular books on end-of-life issues.)
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This year, California Senator Catherine Blakespear introduced SB 1196, a bill to amend the state’s End of Life Options Act so that it would no longer exclude people suffering from dementias.
According to her: “No person should have to suffer as they near end of life, and they should have the right to leave peacefully, on their terms. SB 1196 is about having choice, which we all deserve when deciding on our own medical care.”
But why did she single out dementia?
Cancer used to be the most feared medical condition. However, thanks to an aging population and the lack of any effective, curative treatments, we are now justifiably terrified by the likelihood of being diagnosed with a cognitive and memory disorder.
This is a global concern and one that especially impacts privileged countries. According to the UK’s Alzheimer Society, around one in four people who are currently 55 years and older have a close birth relative with dementia, and one in three people born today will develop dementia in their lifetime. In 2023, there were an estimated 6.7 million Americans 65 and older living with Alzheimer’s disease, the most common type.
Cultural anthropologist Anita Hannig is hardly alone in opining that “those who lack the desire to run the full gamut of their disease – who see no redeeming value in their suffering – should have the option to end their life.”
While 10 states and the District of Columbia have passed voluntary-dying statutes, Hannig has pointed out that America has the most restrictive such laws in the world. Unlike those in Canada and several European countries, our laws bar most anyone who has a dementing disorder from receiving physician aid in dying.
Why?
Because neither American right-to-die advocates or their regular opponents especially want to joust now over whether people with dementia ought to be accorded the freedom to have voluntary deaths. Dan Winter, 62, the protagonist of my nonfiction book about dying well with dementia, told me that the illnesses are “the third rail of the assisted-dying debate.” He pointed out that most everyone prefers to cautiously tiptoe around this subject because we mistakenly assume that all these individuals lack the capacity to make important decisions.
Over a quarter century ago, while formulating the nation’s first assisted-dying law – the Oregon Death with Dignity Act – advocates decided their bill was more likely to pass if it was designed mainly for people with advanced cancers; potential patients were required to be cognitively intact and have a prognosis of six months or less. These were subtle, pragmatic, and arbitrary decisions that effectively removed dementia from the debate, as individuals often survive for decades
Right-to-die opponents predictably attacked SB 1196. One critic wittily wrote that the proposed criteria’s “definition is broad enough to drive a hearse through.” California Catholic Conference Director Catherine Domingo added, “Most critically, by allowing dementia patients access to life-ending drugs, it opens up incredibly vulnerable people to the possibility of coercion or worse.”
The impetus behind Senator Blakespear’s bill has been a small, grassroots, nonprofit organization, A Better Exit. A couple of years ago, their president, Marcia Hofer, traveled to a clinic in Switzerland with her husband, Ricardo. Battered by dementia, he was fortunate in having the physical endurance, financial resources, and family support to die in another country, but he wasn’t pleased with this solution. Interviewed one hour before his death, Ricardo stated, “I firmly believe that this is a right that every human has, to determine when and how to leave this life. I’m not committing suicide. I am committing to live my life to its very end with the same kind of values I’ve tried to exercise throughout my life.”
Ricardo’s words and experience empowered Marcia to seek out and identify a handful of like-minded Californians to pursue this issue.
A Better Exit and the senator were not surprised when their bill failed to advance, as the time has not arrived to substantively confront dementia’s full impact and devise different management options. Films like The Father (2020) and Supernova (2021) are only now beginning to engage our attention, as are books like last year’s bestselling memoir, In Love, by Amy Bloom, or Polar Vortex (2024), by Denise Dorrance, or My Father’s Brain (2023), by Sandeep Jauhar.
Let Me Not Get Alzheimer’s, Sweet Heaven (2019), by English activist Colin Brewer, asks tongue-in-cheek in one of his provocative chapter headings, “Will you still need me, will you tube-feed me, when I’m ninety-four?”
SB 1196 is a harbinger of things to come, and it will be revised and resubmitted in California. I predict that as more people suffer from dementing illnesses, we will undoubtably cross a threshold and finally witness significant changes.
(Please scroll down to comment.)
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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THANK YOU!!!
Losing one’s brain – one’s self – while the body lives on is a terrifying prospect. The self suffers, the family suffers, and the amount of money spent on care is astronomical. Having a legal option to end our lives while we still have decision-making capacity – even if “natural death” might be years away – will save individuals and families the trauma of either suffering through the years of anguish or the unpredictable and sometimes violent suicides that people are forced into. We can be a MUCH more compassionate society than this!
Yes, the cost of care is high. My late husband had frontotemporal degeneration and we spent over $500K on his long-term care. I don’t think one cent was wasted. I did receive his life insurance and about $120K remaining in his 403b plan, but I still have additional money in my name. At one time, I goofed up the withdrawals from his 403b plan and spent about $40K of *my* money to keep his bills paid. Should I develop dementia, I’ll never even think of ending my life prematurely for one second. My late husband was well-cared for until his death.
Final Exit Network’s advance directive for dementia may be a helpful resource for people facing the issues raised by Dr. Cohen. See: https://finalexitnetwork.org/advance-directives-for-dementia/