Well-Being

Choosing a Final Exit

August 28, 2017

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BABY BOOMERS have watched aging relatives and friends who have no terminal disease but suffer increasingly debilitating dementia.  Some are exploring alternatives for a better and peaceful death that give them some control over the process; others are horrified by the notion.

When KD,* a woman in her mid-eighties, legally blind from macular degeneration and having increasingly upsetting nightmares, broke her pelvis, she couldn’t bear being carried around.  She’d had enough.  Along with her family, she chose VSED —voluntary stopping of eating and drinking—set a date, and arranged for a “comfort pack” from a local hospice.  These generally include medications for anxiety, nausea and pain, to be kept in the fridge just in case.

After two weeks, KD died of dehydration, with her family gathered around and everyone agreeing it was a “good death.”  The average time for death via VSED is 10 days—the time it took the husband of DC-based radio host Diane Rehm to die using this method.  Severely crippled by Parkinson’s disease, John Rehm was considered “terminally ill”—having an illness predicted to cause death within six months—for which a host of states and recently DC (but not Maryland where Rehm lived) have passed “aid in dying” bills.  Dementia is rarely considered “terminal.”

A 2015 New York Times magazine article widely discussed among boomers described plans for death made by retired Cornell professor Sandy Bem after experiencing several years of what she called “cognitive oddities.”   Diagnosed with a precursor to Alzheimer’s Disease at age 65, Bem told a neurologist, “I want to live only for as long as I continue to be myself.”

Reading “The Peaceful Pill Handbook” by Philip Nitschke, Bem learned about phentobarbital, a barbiturate used in veterinarian euthanasia and state-sanctioned physician-assisted suicides. She ordered two 100-milliliter bottles from an address in Mexico provided by the book.

When Bem lost her ability to play the piano, read novels or follow movie plots, she chose a date.  When she could no longer remember who was related to whom among her immediate family members, she moved the date up— to May, 2014, five years after her diagnosis.  At that point, she completed a document she’d started earlier titled “Ending” that made it clear no one helped her either with making the decision or with killing herself.

Another widely discussed article appeared in The Atlantic in 2012, by University of Pennsylvania oncologist and bioethicist Ezekial Emanuel titled “Why I Hope to Die at 75.”  Emanuel writes, “We wish our children to remember us in our prime. Active, vigorous, engaged, animated, astute, enthusiastic, funny, warm, loving. Not stooped and sluggish, forgetful and repetitive, constantly asking ‘What did she say?’ We want to be remembered as independent, not experienced as burdens.”

“At 75 and beyond, I will stop getting any regular preventive tests, screenings or interventions. I will accept only palliative—not curative—treatments if I am suffering pain or other disability…65 will be my last colonoscopy…flu shots are out.”

Emanuel quotes Sir William Osler, author of a classic turn-of-the-century medical textbook, The Principles and Practice of Medicine: “Pneumonia may well be called the friend of the aged. Taken off by it in an acute, short, not often painful illness, the old man escapes those ‘cold gradations of decay’ so distressing to himself and to his friends.”

Some applauded Emanuel’s position, with reasons ranging from how they want to be remembered to concerns about draining their children’s bank accounts with the high costs of health care for dementia patients.  But others expressed some version of: “We took care of our kids—let them take care of us.”  Because Emanuel was 57 at the time of writing, most readers hoped he might move the timeline ahead by at least five or ten years as he got older.

The Alzheimer’s Association, responding to a sufferer’s suicide, included in its statement: “…we must also affirm the right to dignity and life for every Alzheimer patient and cannot condone suicide.” The association, at the same time, takes the position that “no person with Alzheimer’s will be made to endure unwelcome efforts to prolong dying in the advanced state of the disease or discomfort due to the lack of treatment for pain.”

“Death with dignity” is one of the preferred umbrella terms for an individual’s ability to choose the timing and means of their death—as opposed to using the word “suicide”—and is the name of an organization that provides information for terminally ill patients, in particular about VSED.

The Hemlock Society—started in 1980 by Derek Humphry, a co-author of the 1991 book Final Exit— has over time morphed into two groups. (While hemlock and other poisonous plants can be deadly, the death is not a peaceful one and thus isn’t mentioned in the context of orchestrating one’s own death.)  One, Compassion and Choices, focuses on legislative change.

The other, Final Exit Network, addresses “the current needs of those who are suffering now in a very real and personal way”—by providing “Exit Guide” services to members who are “suffering from intolerable medical circumstances, are mentally competent, want to end their lives and meet our official written criteria.”  What exactly those services include depends on individual preferences and needs needs, but the “intolerable medical circumstances” include Alzheimer’s Disease and other conditions that affect mental as well as physical functioning.

While the right to “death with dignity” for terminal illnesses is predicted to become legal in more states, strong opposition remains from institutions like the Catholic church as well as from medical professionals, ethicists and others who worry about abuse and about the conflict with physicians’ prescribed roles as healers.

When dementia is the issue, however, opposition is exponentially more pronounced—placing greater burden on the individual to make their own way: those wanting professional support can turn to Final Exit Network; and those who prefer to plan farther ahead can obtain a “peaceful pill.”  Finally, there is VSED, with the possibility of “comfort” care from hospice.

*the author’s godmother

—Mary Carpenter
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6 thoughts on “Choosing a Final Exit

  1. Nancy McKeon says:

    Mary, your piece reminded me of my friend Madeleine. Years and years ago she told me that she and her daughter had agreed that she, Madeleine, wanted a way out if it came to that. They talked about the Hemlock Society, but I don’t know if they ever did anything about it. Madeleine’s father had lingered for years in a hospital bed in the dining room in the long end stages of Parkinson’s; she didn’t want that for herself. As it turned out, she did indeed get Parkinson’s and, while her demise was quicker than her father’s, she slipped into dementia and had little control over anything in the final one or two years of life. She didn’t mourn her father when he finally died because she had mourned him many years before. To those of us around her, her death also seemed like an after-thought, albeit a merciful one.

  2. Lois B. Morris says:

    Beautifully done and important. Thank you, Mary.,

  3. Catherine Clifford says:

    Important topic. My brother just mentioned that he switched from an excellent doctor because she was Roman Catholic and made clear she would not be able to help him with proactive end-of-life decisions should he want to avail himself.

  4. The image suggesting a long walk off a short pier is apt, but the pedestrian looks mighty young! I recall my grandmother looking into the Hemlock Society well before her death from natural causes in 1976, so wonder about the 1980 date of founding mentioned here. Perhaps a predecessor?

    1. Janet Kelly says:

      Hi Margaret,
      Thanks so much for your comment — I didn’t choose the photo and hadn’t notice the age, will speak to the photo editor.
      Every place I read about the Hemlock Society online has the starting date of 1980 — if you have a better source for your earlier date, please send it to me.
      I got the information from the Final Exit website linked in the article –http://www.finalexitnetwork.org/About-Us.html where it says: Originally, The Hemlock Society was organized in 1980, but over time.

      the organization changed its name, merged with another RTD organization,
      and then in 2003 split into two separate organizations that essentially share
      the same belief in death with dignity, but each of these two organizations has
      a different focus. These two groups are Final Exit Network and Compassion
      and Choices.
      ​Sincerely, Mary​

  5. WOW. Excellent piece Mary… really powerful.

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