The taboo surrounding discussions of a self-controlled death

A recent article in the Washington Post produced by Kaiser Health News and written by Melissa Bailey asserts that openly discussing a self-controlled death, no matter how rational the discussion, is viewed by some people as “subversive” or, at least, out of the ordinary or suspect.

For those of us who support FEN, such assertions may seem foreign or uninformed.  Nevertheless, they are worth trying to understand and respond to.

As the article explains, ten members of a retirement community met secretly one Sunday afternoon at a location away from their community to consider a question many saw as taboo: “When they feel they have lived long enough, how can they carry out their own swift and peaceful death?”

The question presumes that at some point in old age, we might all be ready to die. Bailey sets the stage with this description:

The seniors, who live in independent apartments at a high-end senior community near Philadelphia, showed no obvious signs of depression. They’re in their 70s and 80s and say they don’t intend to end their lives soon. But they say they want the option to take “preemptive action” before their health declines in their later years, particularly because of dementia.

In most of the article, the author was unable to avoid the word “suicide,” but she did use the euphemism “preemptive action” in the quoted section above.  It seems that neither Bailey nor Kaiser Health News is aware of the thoughtful analysis of the American Association of Suicidology (AAS), the leading association concerned with suicide prevention.  The AAS notes fifteen differences between suicide as a mental health problem and a decision to control the timing and circumstances of one’s death to avoid suffering.  

The AAS makes clear that ending one’s life at a time and in the manner of one’s choosing can be a rational, well-reasoned decision that is not the result of emotional or psychological problems when a person is faced with prolonged or unbearable suffering from disease, including neurological maladies.

However, Bailey writes,

The concept of rational suicide is highly controversial; it runs counter to many societal norms, religious and moral convictions, and the efforts of suicide prevention workers who contend that every life is worth saving.

Such views find support among some professionals in the field of geriatrics, such as Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and identified by Bailey as “a leading expert in elderly suicide.”  Conwell asserts,

The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common.  That’s particularly dangerous with older adults because of widespread ageist attitudes.

According to Bailey, Conwell believes that “As a society, we have a responsibility to care for people as they age. Promoting rational suicide creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.”  Further, Bailey writes that suicide prevention experts “argue that all suicides should be avoided by addressing mental health and helping seniors live a rich and fulfilling life.”

Aside from the ageist accusation, these comments make clear that some of the experts do not understand what motivates people to want to control their own deaths.  They ignore the rational desire to avoid suffering or the long period of diminishing abilities normally experienced by those with neurological diseases, some of which destroy both physical abilities and mental capacity in later stages.  Those who have followed my writing on end-of-life (EOL) issues will know that no amount of better care, mental and physical, would weaken my decision not to live to the end of dementia, for example.

The ageist charge can be turned on its head.  I consider it ageist to assume that older adults are incapable of having a rational discussion and consideration of controlling the manner and timing of their own deaths when their quality of life is unacceptable to them.  It is time to stop such condescending to older adults and accept that rational people, including older adults, can entertain a wide range of ideas, no matter who disagrees with them. For someone in geriatrics to harbor such attitudes is unfortunate, especially for his older clients and patients.

Kaiser Health may just be discovering that many older adults are ready to think about the kind of deaths they want, but anyone who has paid attention to Gallup polling would know that Americans of all ages are open to self-controlled deaths in appropriate circumstances.  Gallup’s annual Values and Beliefs poll, conducted May 3-7, 2019, asked Americans to rate whether different practices are morally acceptable or morally wrong, but the survey used loaded words in some parts.  

When asked about “suicide,” 79% of Americans said it is morally wrong, with 17% saying it is morally acceptable.  But when asked about “doctor-assisted suicide,” only 44% said it is morally wrong, with 52% saying it is morally acceptable.  Such widely different results may indicate the questions are defective, or perhaps there is a difference in the minds of Americans when a doctor is involved and when one may not be involved.

A year earlier, in response to a slightly different Gallup question, 72% of Americans expressed a belief that doctors should be legally allowed, at a patient’s and a family’s request, to end a terminally ill patient’s life using painless means–what is commonly called euthanasia.

When the word “suicide” is used, less support is shown.  When “euthanasia” is described, but the word is not used, support for the proposition is higher.  This suggests that if Americans were polled about support for “self-controlled dying” or “self-controlled death,” there would be high support.  Yet, according to Kaiser, older adults continue to feel that even discussing the subject of self-controlled dying might be unacceptable.

Discussing end-of-life issues, including having a self-controlled death, is not new, as Kaiser Health News seems to think.  Death Cafes, events where people gather to have just such discussions, have been around since 2004, when a Swiss anthropologist and sociologist conceived of the idea. The first one in the US happened seven years ago near Columbus, Ohio, organized by a hospice worker, and the idea has spread.  The Death cafe website has identified over 4500 Death Cafes in the US alone.

Since 1964, the Funeral Consumers Alliance encouraged people to think about death and dying issues, both funerals and a wide range of EOL concerns.  After the widespread adoption of advance directives by the states in the late 1980s, this interest in thinking about and talking about EOL issues only increased.

There should be no surprise that older adults at retirement centers are getting together to have such talks.  What is surprising is that they consider the topics taboo or subversive.  After all, the Hemlock Society existed from 1980 to 2003, followed by the creation of the Final Exit Network to continue Hemlock’s work.  Countless articles have been written about death and dying in publications as varied as Reader’s Digest, the New Yorker, and local newspapers.  These articles increased after Oregon’s right-to-die law took effect over twenty years ago, followed by the more recent adoption of similar laws in Washington, Vermont, District of Columbia, Colorado, California, Hawaii, New Jersey, and Maine.

Millions of adults listened to the NPR program The Diane Rehm Show, on which Rehm discussed the death of her husband from Parkinson’s by voluntarily stopping eating and drinking (VSED), and his preference for assistance in dying if it had been available.  Still others (over 20,000) listened to the TED talk by Phyllis Shacter, also on the subject of VSED, the route chosen by her husband to control the timing of his death.  Both women wrote books that detailed their experiences with the deaths of their husbands and advocated for greater choice in dying.  And many others have written books on the same subject, including the 1991 book by Derek Humphry, Final Exit, which has sold over 1.25 million copies.

The Kaiser-produced article makes clear that no one has researched how many older adults who have controlled the timing of their own deaths may have been clinically depressed or suffering from some other mental illness.  All of the concern expressed by their chosen experts is derived from those experts’ biases, imaginations, and suppositions.  

However, one person in the older adult group stated something that I have heard frequently from other older adults.  Living on a bucolic campus, with an indoor heated pool, a concert hall, many acres of wooded trails, and having guaranteed housing, medical care, companionship and comfort for the rest of their lives does not solve the problem of not having a quality of life acceptable to them because of a debilitating medical condition.  As one group member remarked about her excellent retirement community, “We are saying, thank you very much, but that’s not what we’re looking for.”

People do need a safe environment to explore their feelings, fears, and other concerns without experiencing interference by people who may be well-meaning, but do not share the same values and beliefs.  From FEN’s experience, we know that if you bring up the subject of a self-controlled death with the wrong person, you could be in for an awful experience.  You may become subject to intervention by law enforcement, medical personnel, and/or psychiatric staff.  

For older adults in environments where the free flow of ideas is not well-tolerated, surreptitious meetings may be called for.  However, Death Cafes are one option for such people, or they could contact FEN to find local resources that could provide access to people who will not be judgmental about discussing a self-controlled death.  

FEN and Compassion and Choices, along with state and local right-to-die groups are usually willing to provide speakers on EOL topics that can open up subjects that may seem taboo to some.  Humanist groups and UU congregations (and a few others) also support the open discussion of EOL issues.  Having such groups involved may remove any stigma that some older adults may feel.

It is time for older adults to exercise their prerogatives to talk about their concerns, no matter whose beliefs and values are challenged in the process.