Friday, February 3, 2017

Long day's journey into night

Anyone with Alzheimer’s who still has his or her wits intact is likely to have forebodings about the disease, no matter how many years the passenger has to sail to arrive in that dark, forbidding  port. The final journey, technically the late stage of Alzheimer’s, can go on for many years. The final stage, as I understand it, can go on for many years with what I might call the soul, or if you prefer, the psyche, still intact. But what to do when the person with Alzheimer’s is just a shadow of his or her vital past? In the book Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s, the authors, including the celebrity maven B. Smith, who has the disease, make the point that the late stage of the disease is not all confusion and misery. There are still pleasurable moments, as I understand it, in the joy of being with loved ones and looking through treasured photo albums, among other social activities.
Recently, one of Massachusetts’ oldest institutions—the Massachusetts Medical Society, founded soon after the decisive American Revolution battle of Yorktown in 1781—was in the news for its provocative position on right-to-die legislation. As Patricia Wren, the Boston Globe reporter who wrote the article, noted that back in 2012 the medical society opposed the referendum. The reversal, Wren commented, came at a time when “death with dignity” is gaining traction, driven by some medical organizations.
Will that privilege extend to Alzheimer’s patients in their terminal stage? Until recently, I assumed that the answer was no. Last year I learned that even Oregon’s pioneering right-to-die legislation does not permit doctor-assisted suicide if the person is deemed incompetent on account of Alzheimer’s or some other form of dementia.
But then I came across the website of End of Life Washington [endoflifewa.org], a Seattle-based organization that appears to be able to provide a route out of a Catch-22 for people who want to die with dignity without devastating their loved ones’ financial and emotional resources. A two-page, single-spaced statement offers up a wealth of questions as well as answers.
“How can I maintain dignity or ensure control over my dying after I become incompetent? How can I or someone else end my life if I become completely demented? If you are the caregiver, in many cases one’s spouse, how do you go about making the grave decision to stop providing life-sustaining nutrition?” The statement goes on to note that while many people would prefer to die naturally than be kept alive in the very late stage of Alzheimer’s, these wishes are not always honored.
End of Life Washington’s role is to make sure that the person with dementia makes clear his or her intention before she or he is no longer competent to make such a decision. As an example, the organization describes an anonymous person, under the alias “Mary,” as someone whose parents both had Alzheimer’s, leading to Mary’s eventually developing the disease as well. End of Life Washington decribed Mary as a strong-willed woman, who cared for each of her parents as they succumbed. “After acquiring a pledge from her physician to refer her to hospice as soon as she was deemed eligible, she voluntarily stopped eating and drinking,” leading, over time, to her death, in accordance with her wishes.
This approach, of course, remains controversial. It’s not only the Catholic Church that has qualms about what might be deemed as euthanasia. Many doctors have concerns as well. There is good reason why the Hippocratic oath—Do no harm—has endured for roughly 2400 years. But I like the idea of being spared the torment of the disease’s terminal ravages. And I suspect that most of my Alzheimer’s disease cohorts would prefer that final option as well.

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