Tag: death with dignity

Review of Book About the Death-With-Dignity Movement

September 5th, 2012 — 2:37pm

Faced with my mother’s decision to end her life after suffering from Parkinson’s disease for many years, I spent the last year of her life wrestling with how to respond. Because her doctors were unwilling to help her – and because assisted suicide is illegal in my hometown (Washington D.C.) — my mother decided to stop eating and drinking, believing it would pose less of a legal risk to my sisters and me. Despite the near total cessation of food and liquid, she lived for close to two weeks and would have lived longer if she hadn’t taken an overdose of morphine several nights before she died in order to speed things along.

Although I did not initially embrace her decision to end her life, I was angry and distressed at how hard it was for her to accomplish her “good death” and, in the years since, I have become deeply convinced that choosing when and how you die is a basic civil right. In his cogent, detailed chronicle of the modern right-to-die movement, In Search of Gentle Death: The Fight for Your Right to Die With Dignity, social historian and author, Richard N. Cote, makes this argument in eloquent, quietly reasoned prose.

In a passage that I found deeply resonant, he writes: “Only the suffering person is capable of determining how much agony is endurable and deciding that the choice of a peaceful, painless death is preferable. The death-with-dignity movement declares that it is an individual’s right to decide whether or not to continue living, not the privilege of someone else to require that he or she must live.”

Upfront about his admiration for the movement and its leaders, Cote assumes a corresponding sympathy in his readers and I was initially distracted by the book’s “preaching to the choir” perspective. But once Cote gets into his story, he spends little time editorializing and is never shrill or polemic. And for a book about illness, death and the hard choices they command, I found the book surprisingly entertaining. With a novelist’s eye for detail, Cote skillfully brings a wide and colorful cast of characters vividly to life, introducing us to the many activists and patients who have shaped the modern right-to-die movement.

Started in the 1930s by a small group of intellectual philosophers, the death-with-dignity movement has evolved into a vast, international civil rights movement. The titans of that movement — Derek Humphry and Jack Kavorkian – are given top billing (appropriately enough), but Cotes also includes a number of less familiar figure including his friend, George Exoo, a liberal Unitarian minister who worked as an “exit guide” and found himself facing a 14-year prison term after helping an Irish woman, Rosemary Toole, to die. Many others, including Dr. Soichiro Iwao of Japan, Ludwig Minelli of Switzerland, Dr. Gustavo Alfonso Quintana of Columbia and Marilyn Seguin of Canada are shown putting their personal and professional lives on the line in the service of their beliefs.

But for me the most powerful stories were those of the patients who were willing to travel, testify and make themselves into “case studies” to help win the legal right to end their lives peacefully and on their own terms. There was Sue Rodriguez, an athletic woman struck down with ALS at forty-one, who was willing to be the “poster child” for the right to die in Canada and whose court case changed the way Canadians view the issue. (Her words, “If I cannot give the consent to my own death, then whose body is this? Who owns my life?” were a haunting challenge to those who would make such an act illegal.)

Or, the fascinating, morally ambiguous case of Holly Bosscher, a Dutch woman, whose hard life and chronic depression led her to an unshakable desire to end her life and whose death changed the legal physician aid-in-dying laws in Holland to include “unrelieved and existential pain” as a legal grounds for a suicide.

Cote also brings a number of rich new details to the by-now familiar story of Derek Humphry’s wife, Jean, who in 1975 asked her husband to help her procure the drugs necessary to end her life. (She suffered from metastasized breast cancer and was in terrible, unrelieved pain.) Despite the fact that it meant committing a felony under England’s draconian Suicide Act, Humphry chose to help his wife end her life and an activist – and a movement — was born.

Humphry’s difficult second marriage to Ann Wickett, which nearly derailed the Hemlock Society, is also described in great detail and, frankly, Hollywood could not have written a more personally and professionally destructive spouse for a man in his position. But somehow, Humphry slogged through it and, aided by the phenomenal success of his how-to-die guide, Final Exit, the Hemlock Society grew and flourished.

Unfortunately, when Humphry stepped down as director in 1992, the group fell prey to in-fighting and lost much of its public support. Re-named “End-of-Life Choices” by its board in 2003, membership plummeted. End-of-Life Choices then merged with another right-to-die organization and became Compassion & Choices in January of 2005, headed up by Barbara Coombs Lee.

Dubbed “the Hemlock Society, decaf version,” by one former Hemlock board member, C&C immediately distanced themselves from Caring Friends, the Hemlock Society’s controversial “dying-member assistance program,” and then returned the insult by likening the teaching of self-deliverance methods to promoting “coat-hanger abortions.”(The Final Exit Network has continued the work of Caring Friends despite the arrests of seven of its members.)

In his low-key, almost pastoral way, Cote admonishes both sides and makes an impassioned plea to end the ideological turf wars. There is a place for pushing legislative reform — and good reason to continue teaching do-it-yourself deliverance methods, he says. And, as In Search of Gentle Death shows us, the death-with-dignity activists have much to be proud of. With this important testament to their achievements to bolster them, the future of the movement — and those of us who will benefit from their efforts — looks bright indeed.

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Dr. Death’s Final Decision

June 4th, 2011 — 9:59pm

After championing the rights of the sick and suffering to get help ending their lives — and providing that “help” to scores of terminally ill patients — Dr. Jack Kevorkian died of natural causes on Friday at the age of 83.

According to Geoffrey Fieger, the lawyer who represented Kevorkian in several of his trials in the 1990s, Kevorkian was too weak to take advantage of the option he had offered others and had long wished for himself. “If he had enough strength to do something about it,” Fieger told a news conference in Southfield, Michigan, “he would have.”

If that is true, there is something almost epically tragic about the fact that a man who fought so long and hard for patients’ right to die on their own terms, wasn’t able to take advantage of this option in the end. But then who is to say “Dr. Death” didn’t simply change his mind? He’d apparently been suffering from kidney failure and pneumonia for over a month, long enough to plan his own death if he’d wanted to. He was a doctor and entirely familiar with how to end a life quickly and painlessly. And given his well-known penchant for drama and attention, you’d think he’d want to make himself exhibit A for what he believed in. (At the start of his third trial, he showed up in court wearing Colonial-era clothing to show how antiquated he thought the charges were and, after videotaping himself helping to kill a patient, he voluntarily handed the tape over to “60 Minutes.”)

The fact that Kevorkian didn’t end his own life is, to me, a potent reminder that our political beliefs are not always in the driver’s seat when it comes to death. Just as one can imagine even the staunchest anti-assisted suicide crusader wavering in the face of extreme pain and disability, I have found that certain pro-assisted suicide people seem to believe that killing oneself is actually a better option than dying naturally. Often, when I mention that I wrote a book about my mother’s decision to end her life after a long illness, people say, “Oh, well I definitely plan to do that. I’ve already made it clear that that the minute I get a disease, I want someone to take me out back and shoot me!”

I get the humor but there is a glib — even fashionable — assumption that suicide, assisted or not, is a good way to go. I want to ask: How would your kids feel if you do that? Your spouse? And how would you feel if it was them making that choice? I’m a big supporter of the Death with Dignity Laws in this country, but frankly, as long as I’m not in pain and have some quality of life, I’m planning to “go naturally,” just like Kevorkian did in the end.

The idea that ending your life is going to be easier and more straightforward than letting nature take its course is something of a happy illusion. Having witnessed both my parents dying in very different ways, I know that even the best laid plans for death can go awry. It reminds me of the “birth plan” I drafted when I was pregnant. Somehow, between planning the perfect play list and specifying that I didn’t want an episiotomy, I forgot to factor in throwing up, forgetting to breathe, and the uncontrollable urge to yell obscenities at the nurse. So much for my beautiful birthing experience.

It may be a cliche, but there really are some things we can’t control and even for strong-minded people like my mother, who was determined to plot the details of her “end,” you simply cannot know how you will feel when the day comes. In fact, my mother set and changed her “death dates” several times, discovering on the chosen day that she wasn’t quite ready to go after all.

In Bill Moyers’ PBS special on assisted suicide a few years ago (“On Our Own Terms: Moyers on Dying”), not one of the people Moyers followed actually ended up killing themselves. There was always one more event they wanted to stay alive for: a birthday, or a grandchild’s graduation. Every one of his subjects waited until it was too late and no longer had the physical capability to manage it. All, except for one woman who died from natural causes before she had a chance to take the pills she’d stockpiled. Pulling the plug turns out to not always be so easy.

Adding to the vagaries of the psyche is the unpredictability of the body. Unless you live in one of the three states where physician assisted suicide is legal (Oregon, Washington and Montana) and have access to a group like Compassion & Choices who will help make sure you are taking the right dose of drugs, chances are you will not know how to calibrate the means of death. In my mother’s case, stopping eating and drinking took far longer than she’d expected, and an attempted morphine overdose failed. Although she did ultimately manage to end her life, it was not the controlled, predictable event she’d hoped for.

I read recently that the issue of assisted suicide splits this country almost completely in half, making it an especially divisive and contentious issue. I would respectfully suggest that both sides may have lost sight of the fact that death can – and will — make a mockery of even the most carefully laid plans, the most passionately held beliefs.

And who knows, when it came down to it, maybe Jack Kevorkian simply wanted to stay alive and was hoping he might recover. Or maybe his lawyer is right and he wished someone had been there to help him speed things along. We will never know and that is as it should be. Because as politicized as it has become in this county, death is ultimately a private experience, fraught with unknowns. And Dr. Kevorkian, like all of us who support assisted suicide as a legal and moral principle, had the right to change his mind.

This piece was published in Salon on June 4th, 2011.

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The Ghost in My Quilt

March 15th, 2011 — 3:50pm
mother's quilt, Vermont

My Mother's Quilt, Vermont, March 2011

After a whirlwind 24-hours in New York City to promote my book and attend an award ceremony, I arrived at my sister Sarah’s farmhouse in Northern Vermont ready to relax and enjoy the deep piles of New England snow.

Straight out of a Vermont Life calendar, Sarah’s house is a gorgeous 1850’s era farmhouse with a large pond and spectacular three-story red barn, and my first evening was spent enjoying a meal with some close friends who live nearby. But as we put away the leftovers and prepared to turn in, my good mood was abruptly punctured when my sister said: “I hope you don’t mind that I have Momma’s quilt on the bed where you’re sleeping. I’ve never brought it out before but I realized that the blue was a perfect match for the trim so I stuck it in your room.”

My mind instantly flashed on the blue-and-white quilt that had covered my mother’s bed during the final months of her life. “My God, I think she even died under it,” I thought uneasily, although not wanting to be overly dramatic, I kept the thought to myself. But I could feel my body recoil. Because I did mind. A lot.

“I’m not so sure I do want it on my bed,” I finally replied, not sure how to explain why I felt such an intense aversion to the idea. I’m not superstitious and I could have viewed this remnant of my mother’s life as a comfort, an opportunity to feel her presence in a loving and peaceful way. But I didn’t. Instead, I felt a painful stab of memory as scenes from the days leading up to her suicide flipped through my mind. In distressing detail, I saw her lying in her bed, lonely and unhappy, plotting how to kill herself — and all the time covered by that damn quilt!

“Really?” My sister looked over at me with surprise and perhaps a slight trace of impatience. “Well, maybe you should get over that,” she suggested. “Think of it as a nice thing.”

“Yeah, maybe,” I said, still not wanting it on my bed but reluctant to insist she give me a different quilt.

Gathering up my suitcase and preparing to go upstairs, I realized that my mother’s old patchwork quilt — an item I’d described in my memoir, Imperfect Endings — was an emblem to me of her entrapment. Entrapment in her room; in her bed; and in her illness. To her, death was the means to free herself from that entrapment, something I came to understand and even sympathize with. But knowing that she’d chosen death because she no longer felt life worth living was still painful for me to confront, even after all these years.

And I couldn’t help feeling that if I slid under that same quilt, I would find myself similarly – scarily – yoked by it. I don’t believe in ghosts but I wondered: Wouldn’t this most intimate of her possessions, the very cloth she’d touched and lain under day after day, night after night, contain some energetic memory of her? Some psychic imprint of her spirit, her personhood? And not just of her, but of her pain, her desperate desire to escape.

Uneasily, I headed up the stairs and entered the room. There was the quilt. A lighter blue than I remember. Pretty. Simple. Just a quilt, I told myself. A quilt that matches the trim.

But the uneasiness stirred again as I climbed in underneath it and I had to resist the urge to unfold the extra wool blanket at the foot of the bed and cover it up. Drifting off to sleep, I wondered if I would dream of her and who she would be in those dreams. Would she be the mother I’d had as a child? The tall, beautiful woman with thick dark hair and broad shoulders who’d made me cocoa and tucked me in at night? Or the depleted, stiff woman who’d lain under this quilt at the end of her life, longing to escape the confines of her body, of the earthly realm itself?

It turned out that none of these ghosts would appear, imaginary or otherwise. Instead, as the snow fell outside my window, adding to the already impressive drifts piled up against the house, I slept as heavily as a child. And a funny thing happened. By the second night, the quilt no longer seemed to hold its aura of entrapment or pain. It was… just a quilt – simple, pretty. A good match for the trim. An object that happened to have belonged to my mother.

And as I pulled it up around me on my last night, ran my fingers along its soft edges, I felt myself held lightly in its embrace.

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