1. Painful Words
Let those who seek death with dignity beware, lest they lose life with dignity in the process.
C. EVERETT KOOP
Fifty years is a long time to be paralyzed. It’s not that I’m complaining. I haven’t suffered through the usual lung and kidney infections that accompany quadriplegia. With the exception of a few seasons of pressure sores, chronic pain, and even breast cancer, I’ve enjoyed miraculously good health throughout my decades of paralysis.
But still, after about twenty-five years of living in a wheelchair, I noticed my paralyzed body was beginning to break down. That was a year of blood pressure problems, drastic weight loss, infections, and, worst of all, pressure sores on my sides and back. For three long weeks, two stubborn pressure sores forced me to bed. It wasn’t easy lying flat and faceup. And who could guess how long it would take to close those oozing wounds? I’d been in bed with sores before for two months!
In bed, nothing really changed but the days and, occasionally, the sheets. Thankfully I was able to keep my mind active by writing an article or two and a few letters. My husband, Ken, hung a bird feeder outside our bedroom window, thinking the sparrows and occasional nasty blue jays would brighten my spirits. A squirrel he named Mr. McFizz came by daily for the peanuts that Ken tossed under the feeder. The birds and the business of writing articles kept my mind active.
I tried to keep my heart active too. Friends came by. I listened to audiobooks and sermons. I watched a little television. All this kept depression at bay. Well, almost.
Because at times it was oh so hard.
Like the day I began to feel claustrophobic, so hedged in. Being paralyzed, I can’t stretch or toss and turn. It’s not like I can hop out of bed for a few minutes, visit the fridge, stop by the bathroom to run a brush through my hair, and then climb back under the sheets with a good book. Gravity is my enemy in bed. While there, the only movement I can manage is to turn my head on the pillow. And that summer of pressure sores, after several weeks of lying stiff and still, I felt I couldn’t take any more. I had gone through enough.
At that point in my life, I had already survived many years of physical setbacks, and my faith had propelled me long past the bitter denial and bargaining—the stages of depression I experienced when I first broke my neck. But that didn’t keep my mind from playing weird games. I am tired, just plain worn-out from living life with hands that don’t work and feet that don’t walk. I’m not pitying poor me; I’m just weary and ready to let go.
I fought back tears and tried to focus on the sparrows fluttering around the feeder. Maybe they’ll cheer me up. But not so. In fact, for a brief moment, I almost felt envious. You birds have so much freedom, you can do as you please. No claustrophobic cages. No problems.
I spent the rest of the afternoon staring at the ceiling, closed off from the chatter of the birds, and listening instead to the drip-drip of the urine that flowed from my catheter tubing into the bedside bucket. My thoughts floated back to the early days of my paralysis in 1967, when I was hospitalized and in bed for not just three weeks but an entire year. My thin, gaunt frame had been covered with pressure sores, and even though I was force-fed, I could not gain weight. That meant even more sores. Thinking back, I was amazed that I had endured an entire year of lying flat and faceup.
During that time of hospitalization, my depression wasn’t mild or fleeting. I was gripped with the dull, lonely ache of despair. I described my personal holocaust in the book Joni:
Here I was, trapped in this canvas cocoon. I couldn’t move anything except my head. Physically, I was little more than a corpse. I had no hope of ever walking again. I could never lead a normal life . . . I had absolutely no idea of how I could find purpose or meaning in just existing day after day—waking, eating, watching TV, sleeping.
Why on earth should a person be forced to live out such a dreary existence? How I prayed for some accident or miracle to kill me. The mental and spiritual anguish was as unbearable as the physical torture.
Decades had passed since I experienced that horrible anguish, and the distance was great between 1967 and that summer of persistent bedsores. But three weeks of lying still, staring at the ceiling and fighting back tears, brought back echoes of that same anguish. Oh, how I longed to be healed of the sores and free from the confines of bed!
The next morning, after Ken left for work, my friend arrived to give me a bath, breakfast, and new dressings on my wounds. Before she went to the kitchen to pour coffee, she flicked on the little TV by my dresser to NBC’s Today Show. I was relieved when she left the room, which meant I didn’t have to interact or force a smile. I was still down—very down.
After the news, the cohost at the time, Bryant Gumbel, introduced the next segment. A shot of Derek Humphry, sitting relaxed and comfortable on the set, flashed on the screen. I recognized him from my years of advocacy work in the disability community. At the time, he was president of the Hemlock Society, a precursor to the Euthanasia Research and Guidance Organization he now heads. Both organizations were formed to promote the idea that terminally ill people should have the legal right to choose the timing of their own death.
Gumbel held up Humphry’s book Final Exit, the first edition having been published just that year. He tilted it and read the subtitle: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying. Even though I had been out of commission and in bed for weeks, I had heard about Final Exit. Some called it controversial; others said it never should have been published; and still others insisted bookstores should boycott it. Gumbel put down the book and asked, “No qualms about the possibility that this book could get into the hands of someone who is simply depressed but very curable?”
Humphry argued dispassionately, almost serenely, that he was not promoting suicide, but that dying individuals who wish to achieve a painless death ought to be allowed to plan for it. From his point of view, that meant a person should study suicide options, including different kinds of pills and their dosages, self-starvation, and the implications an act of suicide might have with regard to an insurance policy.
My friend came back into the room and shifted my body closer to the edge of the bed to begin exercising my legs. As she mechanically pushed my paralyzed legs through range-of-motion exercises, I remained riveted to the television.
The interviewer turned from Humphry and introduced Dr. Robert McAfee, a surgeon from the American Medical Association. Gumbel posed a frank and open question, the very one I was thinking: “Do you regret the fact that this book is on sale?”
The doctor shifted in his seat, looking a little uncomfortable. The response he gave touched on the problems every physician faces when their patient is near death. No doctor enjoys seeing someone under their care suffer through pain. And although pain management has advanced considerably, some patients can’t face physical discomfort as well as others. It’s a tough and perplexing situation for all concerned.
The doctor concluded, “When there’s a situation of significant suffering, then appropriate medication to control pain, to hasten the end, may occur.”
Gumbel looked perplexed. The doctor’s response did not seem at all inconsistent with the premise of Humphry’s book on suicide. “So what’s the difference?” asked Gumbel.
Dr. McAfee added that a doctor shouldn’t do anything illegal. At that point I was as confused as the interviewer. Was “hastening the end” of a terminally ill person’s life okay as long as it wasn’t illegal? And did making it legal make it right?
After a minute or two, the mini-debate between the author of Final Exit and the doctor from the AMA fizzled. Gumbel shrugged his shoulders and said, “Gentlemen, I don’t think we have so much disagreement as we do varying viewpoints.” The camera flashed to the face of the doctor. He nodded and agreed.
No disagreement? Just varying viewpoints?
Did the three men understand what they had just done? Or said? Or suggested to someone like me? As the morning show moved on to the next segment, I fixed my gaze on my lifeless legs being stretched this way and that. Another hour of a tiresome routine. Each morning the same, day in and day out, year after year. At best, boring. At worst, especially on days like this, depressing.
My mind began to play more games. Since this television show brought up the subject, wouldn’t it be nice to let go, give in? You’ve earned your Brownie points in that wheelchair, and heaven has got to be better than this. When you’re back up in your chair, all it will take will be a quick jerk of the steering mechanism in your accessible van, and you’ll be over the side of the freeway. Nobody would even know you committed suicide, and you’ll be free of this paralyzed body.
I shivered and shook the thought out of my head. Yet I couldn’t escape the cool, calm rationale of Derek Humphry telling me in his relaxed tone that certain people in certain circumstances should end it all.
After my friend finished giving me a bath and had turned me on my side, I continued the battle with my thoughts. Here I was, a woman of faith, experienced in accepting the challenges of a severe disability, basically very content, joyful, and peaceful when up and about in my wheelchair. Yet here I was, toying with crazy, suicidal thoughts!
And if I could be tempted after listening to Humphry’s rationale for the terminally ill, what about the millions of others who watched that interview—who read his book? And not just depressed people with disabilities, but anyone with the Monday morning blues. The three professionals on television may have agreed in a detached way that the disagreement over a person’s right to choose their own death was a matter of semantics, but my anguished thoughts said otherwise. I was convinced that mine was not the only struggle.
In fact, not long after that interview on television, I was flipping through Time magazine and came to a photo that grabbed my attention—a mother staring vacantly, embracing a framed picture of her son. The article was about a mother’s anger over the suicide of her clinically depressed son. He had purchased Final Exit and followed to a T the directives in the book. His family’s words were chilling: “He became obsessed with the book. It showed him the way.”
Obviously a lot of other people, some who were much more depressed than me, watched the same program.
Varying Viewpoints?
A month later, my pressure sores finally closed, and at long last I was able to get out of bed and sit up in my wheelchair. I was hardly the same woman, no longer thinking morbid thoughts. I was amazingly lighthearted and peaceful. How quickly my depression had disappeared!
But I still couldn’t get the Today segment off my mind. It was that thing about “varying viewpoints.” The words the author and the doctor used in the interview kept sticking with me. They didn’t talk about someone committing suicide. No, it was a person performing self-deliverance. All these years later, even that term has been pushed aside for others. A physician under a right-to-die law doesn’t write out a lethal prescription. No, they administer aid-in-dying. It’s not murder; it’s physician-assisted death. The phrases themselves seem as cool and detached as Derek Humphry in the interview.
Why the semantic gymnastics? Why the subtle attempt to wrap respectability and sterility around a cold, hard reality? The Death with Dignity National Center, a nonprofit organization dedicated to promoting death-with-dignity laws, makes this argument:
Physician-assisted suicide, or PAS, is an inaccurate, inappropriate, and biased phrase which opponents often use to scare people about Death with Dignity laws. Because the person is in the process of dying and seeking the option to hasten an already inevitable and imminent death, the request to hasten a death isn’t equated with suicide. The patient’s primary objective is not to end an otherwise open-ended span of life, but to find dignity in an already impending exit from this world. They’re participating in an act to shorten the agony of their final hours, not killing themselves; cancer (or another common underlying condition) is killing them.
Sounds good, doesn’t it? Because committing suicide and murder are still considered socially objectionable. Using these other euphemisms sidesteps the truth and more easily dismantles the long-held ethics that have guided people for centuries.
This is for certain: words have power to persuade. Back in the mid-1980s, one proponent of euthanasia said, “If we try to foist our ideas too strongly and too soon on a society not yet ready to consider them, we will damage our effectiveness. By moving cautiously . . . we gain a larger audience for our views.” Now, more than thirty years later, the truth of that statement chills me. The public no longer thinks it’s such a terrible idea when a person with a severe disability or terminal illness makes a “perfectly reasonable choice” by deciding to end his or her life. In fact, it is celebrated in movies like Me Before You. Here a quadriplegic’s choice to end his life instead of accept happiness with the woman who loves him is called courageous and heralded as a “feel-good tearjerker.” And worse, the broad acceptance of this idea has resulted in the express legalization of assisted suicide in countries like Belgium, Switzerland, Japan, and Canada, and a growing number of US states.
I couldn’t see it then, but back in 1967, when I was one of those severely disabled people confined to a hospital room and surrounded by machines and tubes, my funereal despair was intensified by severe depression. I, or my friends and family, might have been open to listening to aid-in-dying suggestions had we been conditioned by pleasant-sounding persuasion.
“Such a shame, so unfortunate. She’d be better off if she had never made it,” one of my distant relatives had sighed. And it almost sounded not half bad. When you can’t think beyond four bleak hospital walls, the words of experts and professionals, even distant relatives, can sound plausible.
So I have to wonder what I would have done fifty years ago if I had grown up hearing the theme “better to be dead than disabled” echoing in school hallways, family living rooms, and church foyers. What would I have done if ending my life had been as simple as moving to Vermont or Oregon, or to any of the other states authorizing physician-assisted deaths, and obtaining a lethal prescription?
Two People . . . Two Viewpoints
In the weeks following the interview on NBC’s Today Show, I dived into the issue of a person’s “right to die” with an energy my coworkers thought a bit compulsive. I collected so many magazine articles and newspaper clippings that they were spilling off my desk. But I was curious to see how others were responding to the new book on suicide.
One morning when I arrived at work, I noticed my secretary had placed the latest edition of the newsmagazine Newsweek on my desk. I studied the title on the cover: “Choosing Death: A How-To Guide to Suicide Stirs Up a Storm.” And another subtitle: “More Doctors Are Helping the Very Sick Die Gently.”
Immediately I thought of my friend Bob Ball, a business executive who, until the year before, had served as vice president of a large media corporation. But ALS, Lou Gehrig’s disease, changed all that. The last time I saw him, he was sitting in a wheelchair. But soon after, his disease intruded further, and Bob could no longer swallow food. He had a feeding tube put in, and then he was placed on a ventilator. During that time, there were some people who considered Bob’s quality of life to be minimal. Yet I knew otherwise.
I knew he was living what was left of his life with courage— desperate for breath, yet uncomplaining; unable to swallow food, but oddly peaceful; only communicating with his eyes and his indomitable smile, yet communicating so much. His friends and family helped him squeeze every ounce of living out of his days. Near the end of his life, they took several hours to load him into an accessible van and take a drive to the beach. On one hand, I knew what he and his family would say about a book on methods of suicide. But on the other hand, I knew Bob would want his death to be gentle, serene, dignified. I mean, who wouldn’t want their death to be characterized by dignity?
I flipped open the newsmagazine. The cover title was right. What a storm! The arguments in the articles sounded convincing and compassionate. Helping the very sick die gently sounds worthy. I read the stories of other people whose problems were as insidious as ALS. The story of one woman named Helen touched me deeply. After her husband committed suicide, sixty-two-year-old Helen worked three jobs to support her children and hold on to her home. But a serious heart problem changed everything. Between the many operations, she remained a model patient at the rehab center, cheering on her roommates and chatting with visitors long after she should have been resting.
Even when an operation forced her onto a ventilator, Helen never withdrew from life, delighting in the nurses who fixed her hair and fussed over her makeup. Her spirits remained strong even as her body continued to weaken. Next was the amputation of a leg. Then the other leg. Then Helen changed—it was as though someone robbed her of all her joy. One afternoon she beckoned to a nurse to read her lips and write down a note: “I have decided to end my life as I do not want to live like this. I don’t want to make a big deal of this.”
The ventilator was removed. It took a little more than a week for her wish to be granted.
Helen’s problems were as critical as Bob’s, but she held quite a different opinion of her debilitating condition. Helen hated her life. She couldn’t have cared less if her request for aid-in-dying was socially objectionable. The hard, cold reality of her impending death was beyond debate. She despised ethical discussion about her situation. “I don’t want to live like this” was her matter-of-fact, no-nonsense last will and testament.
As I studied her photo in the magazine, I felt I could read her thoughts. Thoughts that were all too familiar, frightening feelings I had wrestled with just weeks earlier while bedridden with pressure sores. I am tired, just plain worn-out from living life with hands that don’t work and feet that don’t walk. I’m not pitying poor me; I’m just weary and ready to let go.
“Oh God, what have we come to?” I whispered as I pushed aside Helen’s picture. “I see Bob’s point of view and also . . . Helen’s.”
Questions for Discussion and Reflection
What Would You Do?
You may not feel prepared for this, but let’s jump right into the heat of the battle and wrestle with a hypothetical situation that is actually quite a common experience. So many of the principles you need to make a decision have not yet been covered in the book, but this will help you get a feel for the difficulty that people face. Read the following scenario and decide what you would do in the circumstance described.
A seventy-eight-year-old woman named Charlotte, who is a Christian, has Alzheimer’s disease and has been placed by her family in a nursing home. She has severe dementia and does not recognize her friends or family members. Charlotte is becoming increasingly agitated. She is not able to feed herself adequately and doctors have suggested to her family that a feeding tube be inserted to ensure that she receive proper nutrition. The family is divided on this question; Charlotte never made clear her wants and wishes about life supports. Charlotte’s daughter wants to say yes to the feeding tube; her son insists no.
Before considering your advice, try to picture what the people in the story might be thinking or feeling. What impact do you think this situation is having on them?
• the daughter
• the son
• the doctor
• the nursing home staff
• Charlotte
If you were the decision maker, what would you do and why?
• side with the son
• side with the daughter
Is there any way to resolve the matter other than by siding with one or the other of Charlotte’s children?
Assume that you are close to everyone in the family. Apart from the decision you made and the reasons for it, what would you tell them? Is there anything you would do for the family?
After you complete this book, come back to this section and answer the questions again. Do you notice any difference in your answers? Discuss your decision again and share your differences.