Choosing a Final Exit

iStock

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
Want to read more of Mary Carpenter’s posts? Click here.