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 Title

The Final Taboo: Rethinking Death with Dignity

 Synopsis

Dr. Gentles' following article on euthanasia and assisted suicide is previously published as a chapter in the book "Euthanasia and Assisted Suicide: the Current Debate", Stoddard Publishing, 1995. Dr. Gentles edited the book.

Notes in the article which reference chapters refer to chapters in this book.

 Author

Ian Gentles

 Author Notes

Professor of History, York University

Book by Ian Gentles
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Canada's Founding Debates: A Conversation With The Founders (1999)
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 Essay - 2/17/1995

The signs are everywhere. The final taboo has been breached, and death has come out of the closet. Over the past decade dying has become a subject of intense and fascinated public debate. Does a patient's family have the right to order the withdrawal of medical treatment if the patient is in an indefinitely prolonged coma (the issue in the Karen Quinlan case)? Does a doctor have the right to help his patients to commit suicide (the claim of the Strangelovian doctor from Michigan, Jack Kevorkian, inventor of the "suicide machine")? Does a young woman suffering from an incurable and paralyzing disease have the right to order her respirator unplugged in the near-certain knowledge that death will result (the demand of Nancy B. of Quebec City, victim of the rare Guillain Barré syndrome)? Is there anything objectionable about a writer taking it upon himself to publish a long and detailed list of ways by which you may do yourself in (the 1991 bestseller Final Exit by Derek Humphry)?

Not only is death now the subject of endless talk shows and journalistic "think pieces," but the interested public are invited to watch programs in which terminal patients die before their very eyes. The dignity or indignity of the witnessed event is then discussed by sober panels of journalists and experts.

To anyone who follows the debate it is clear that the television, radio, and print media in North America are overwhelmingly in favour of "death with dignity," by which they usually mean the legalization of active euthanasia. After all, runs the argument, most behaviour not manifestly dangerous to others - suicide for example - is now permitted in our tolerant society. Why should a doctor or nurse be penalized for assisting people to exercise their recognized right to take their own lives? Public opinion polls show that journalists are merely on the cutting edge of an apparently growing majority who support legalized euthanasia. Reflecting this steady trend is the number of attempts in Parliament in the past few years to pass private members' bills that embody this objective. In February 1991 Robert Wenman's bill, which would have lifted legal sanctions against a physician who administered "measures intended to eliminate or relieve the physical suffering of a person for the sole reason that such care or measures will or are likely to shorten the life expectancy of the person," was defeated. Some months later Chris Axworthy introduced a bill that would have straightforwardly legalized physician-assisted suicide. In 1994 the Senate opened hearings on the question of euthanasia and the government has promised a Parliamentary debate on the subject.

This enormous concern for the issues of death and dying has at least something to do with demographics. Advances in medicine, nutrition, and public hygiene have transformed life expectancy in the industrialized world. People can now expect to live twice as long as their ancestors did a century and a half ago. Most of us shudder at the stories we have heard about incurably ill elderly people leading a dragged out vegetative existence in hospital beds, kept alive only by drugs, intravenous tubes, and respirators. Could anything be more meaningless and undignified? Is it any wonder that according to a recent survey a majority of the occupants of two Canadian senior citizens' homes want euthanasia to be legally available? (Note 1) (Significantly, though, most of them do not want it for themselves.)

But there is more than one fly in the ointment. In the first place, most health-care professionals who treat the dying do not support legalized euthanasia. Another study, carried out by the Human Life Research Institute, reveals that medical workers have no trouble with withdrawing treatment at a patient's request. Nor do they oppose the use of drugs to alleviate pain, even if they hasten a patient's death. But by a margin of two to one they think that active euthanasia should remain illegal. (Note 2)

Some will interpret this as just another example of doctors presuming to tell patients what they cannot or should not do. However, I think there is more to it than that. Keep in mind that these health-care professionals are with the dying on a day-to-day basis. Cicely Saunders, the founder of hospice care for the terminally ill in Britain, maintains that when a person asks for death it is usually because someone has failed them. Dr. John Scott, a Canadian authority on the management of pain, insists that the very cry for death may be the contrary - a cry for validation that continued life still has value. A patient who is attentively cared for and whose pain is relieved (which is possible in almost all cases), does not normally ask to die. Moreover, it is in hospices and palliative-care units, both in Britain and in North America, that genuine death with dignity takes place. Dignity is manifested in the courage, humour, and grace with which the terminally ill meet death, and also in the respect and tenderness shown by those who care for them.

I believe that the root difference between the advocates and the opponents of euthanasia lies in their attitude towards life itself. Most of those who work with the dying tend to see each patient as a unique human being to be respected and valued. These people often view life in religious terms, as a gift that evokes wonder and awe. They usually do not think of euthanasia as an attractive option. By contrast, those whose attitude towards human life is instrumental or utilitarian tend to ask the question, "If you're in intractable pain or no longer any use to anyone, why go on living?" They are usually euthanasia advocates.

I would go farther and assert that the writings of some health-care professionals demonstrate a greater ethical sensitivity and concern for the well-being of the terminally ill than the advocates of "death with dignity." (Note 3) Consider the background of the author of that strange tract for our times Final Exit. When Derek Humphry's first wife, Jean, was diagnosed with breast cancer in 1974 she requested that he end her suffering. He accordingly supplied barbiturates with her morning coffee. Then he married Ann Wickett, and together they founded the National Hemlock Society in 1980. In 1986 they assisted in the double suicide of Ann's parents. Again barbiturates were used, but Ann also had to smother her mother. Afterwards she reflected: "I walked away from that house thinking we were both killers. Two days later I couldn't live with myself."

Then in September 1989 Ann, too, was diagnosed with breast cancer. Three weeks after her operation Humphry abandoned her, leaving a message on her answering machine. He insisted that she was mentally deranged and had her removed from the board of the Hemlock Society. Ann launched a suit against him charging that his actions were "timed and calculated to exploit . . . the weakened condition of the plaintiff, to induce her despair and her suicide." In October 1991, shortly after the appearance of Final Exit, Ann rode into the wilderness near her Oregon farm and took a fatal overdose. She left a note for Humphry, which she had photocopied and sent to her friend Rita Marker with a handwritten postscript:

Derek:

There. You got what you wanted. Ever since I was diagnosed as having cancer, you have done everything conceivable to precipitate my death.

I was not alone in recognizing what you were doing. What you did - desertion and abandonment and subsequent harassment of a dying woman - is so unspeakable there are no words to describe the horror of it.

Yet you know and others know too. You will have to live with this until you die.

May you never, ever forget.

Ann

Rita: My final words to Derek. He is a killer. I know. Jean actually died of suffocation. I could never say it until now; who would believe me? Do the best you can.

Ann.

According to her friend, Ann Wickett said that she did not realize until she got cancer what subtle and not-so-subtle pressure could be put on people to die and get out of the way. (Note 4) Many elderly people already feel that pressure acutely. They have been persuaded that they are a burden and a drain on an overstretched health-care system. Were euthanasia to become legal this perception would inevitably be reinforced. Dying would turn into an obligation for those no longer capable of contributing to society, rather than a right for those lives had become unbearable.

There are other ramifications to legalizing euthanasia, which reveal the shallowness of the arguments for it. Will an absolute right to die make it illegal, for example, to rescue a would-be suicide? Will the pharmacist be obligated to sell a lethal dose of hemlock to anyone who is temporarily depressed?

There will also be enormous potential for corruption. Let us say that I am the principal heir of my aged Aunt Agnes. I happen to know I stand to inherit a million dollars once she kicks the bucket. Might I not find it tempting to nudge Aunt Agnes in the direction of accepting a lethal injection in order to shorten the waiting time for my inheritance? And will there not be a supporting chorus of praise from those who consider this a fine and public-spirited thing for Aunt Agnes to do?

Corruption can take other forms, as well. Does not the story of Derek Humphry suggest that in many hearts there may lurk a less admirable motive for wanting to ease the elderly and chronically ill towards their final exit? Few are so tasteless as to say euthanasia and health-care costs in the same breath. Yet in recent years it has been frequently underlined that medical care for the elderly is a heavy financial drain on the system.

Finally, what of the corruption of the relationship between doctors and their patients? If the same physician who heals is the one who administers death, how trusting of their physicians will the elderly feel once their health begins to fail? What emotion will they experience when a nurse approaches them with a full syringe? How soundly will they sleep in hospital? A high proportion of those who care for the terminally ill are worried about an erosion of patient trust, should euthanasia become legal.

That such fears are not alarmist is suggested by the example of the Netherlands over the past few years. Active euthanasia is illegal there, but for more than a decade the Dutch government has tacitly agreed not to prosecute physicians who report having assisted their patients to commit suicide. Recently, a government-sponsored investigation into the practice of euthanasia resulted in the publication of a two-volume report. (Note 5) Based on extensive interviewing of health-care professionals, the investigators concluded that physicians kill more than 1000 patients a year without their explicit request. (Voluntary euthanasia and assisted suicide account for an estimated additional 2700 deaths a year). Of the thousand who do not request to be put to death 25 percent are fully or partly able "to sum up the situation and decide upon it in an adequate way." Besides the 1000 cases of active involuntary euthanasia, there are 8100 cases in which morphine is given in excessive doses with the intent to terminate life, of which 27 percent are done without the patient's consent, even though the patient is fully competent at the time the decision is made. There are a further 8750 cases in which life-prolonging treatment is stopped or withheld with the intent to cause death without the patient's consent. Almost all the physicians working in nursing homes withhold or withdraw life-prolonging treatment without the patient's consent. In 86 percent of the cases in hospitals, the "do not resuscitate" decisions are made without the patients' knowledge. These statistics concern mainly the elderly. Not included are the deaths of newborns with disabilities, children with life-threatening diseases, and psychiatric patients.

Even more disturbing than the extent of involuntary euthanasia is the discovery that many physicians systematically flout the official guidelines for carrying euthanasia out. More than 20 percent do not consult a colleague, while more than two-fifths do not consider the requirement of a written report important. Over half the practitioners omit to record the proceedings in writing, while between two-thirds and three-quarters issue death certificates declaring that the deaths are due to natural causes. In view of the stipulation that euthanasia is regarded as an unnatural cause of death, this represents plain falsification of records. It is further revealed that virtually all the physicians who intervene without the patient's explicit request issue certificates stating natural death.

The Netherlands is widely thought to be a civilized country. The main goal of the physicians and nurses involved in the practice of euthanasia and the withholding of treatment would not appear, then, to be the saving of money, but the relief of suffering. We may wonder what the experience of legalized euthanasia would be in countries that are more economically hard pressed, or have a more impatient attitude towards the elderly.

***

A few years ago the question of euthanasia took on a personal meaning in my life, when I had to confront the death of my own father. For a long time my father had vehemently expressed his determination not to spend the last stages of his life in a condition of senility, or lying on his back with his mouth gaping open in some hospital ward, unable to recognize anyone, waiting for death to carry him off. After retirement he had worked as a volunteer, repairing TV sets at his local hospital in Scarborough. On his rounds through the hospital he had seen many examples of what he referred to as "human vegetables," and had vowed that he would never allow himself to suffer the degradation of these pathetic, forgotten individuals. A confirmed atheist, he wanted nothing to do with funerals or any of the traditional panoply of mourning, which he regarded as an expensive piece of hypocrisy and a waste of time. When in the 1980s the movement for legalized euthanasia gained a higher profile, he embraced it enthusiastically. He joined the local chapter of Dying with Dignity and drew up his own "living will." In this document he laid down that nothing was to be done to prolong his life should he fall prey to a terminal illness, and requested that his attending physician should administer a lethal injection to hasten his death, if the law permitted. He gave copies of the document to my brother and me, assuring us that there would be no trouble finding a physician to carry out his wishes, since he had heard that doctors did it all the time. Feeling uncomfortable, we nonetheless swallowed our objections, comforting ourselves with the thought that since our father was then enjoying robust good health we would not have to face the dilemma of his wish for assisted suicide for a good long time to come.

In the summer of 1991 my father began to lose weight and was frequently tired. Sometimes he could not keep food down. He assumed that he had a nasty bout of stomach flu and moderated his diet. With his inveterate suspicion of doctors and his successful avoidance of hospitals all his life, he postponed seeing his physician for several months. Finally, at the urging of a friend, he made an appointment at the end of January 1992. The diagnosis wasn't long in coming: cancer of the bowel, which had spread to the stomach and liver. To me it now became clear why he had talked so much about death during the previous year and a half. Refusing the specialist's offer of surgery, chemotherapy, and radiation, he announced that he would die at home and would accept nothing beyond elementary nursing care to control pain and stay as comfortable as possible. He summoned my brother and me to separate interviews, and to our distress reiterated his determination to curtail his suffering by ending his own life.

For as long as we could remember, neither my brother nor I had been able to confront my father on major issues, since he did not brook argument. If we disagreed with him once his mind was made up we either had to get out of his way, use subterfuge to frustrate his will, or capitulate. This time the issue was momentous enough, and his request for help explicit enough, that we had to be straightforward. We told him that we respected and supported his decision to refuse all medical treatment; we would back his decision to die at home, even though he was living alone at the time. But assisting suicide was illegal, and we didn't care to be involved. Athough my father was an atheist, many of his friends were religious believers, including his closest friend, who did not refrain from telling him that his talk of suicide appalled her.

Finding himself thwarted, he became angry. But rather than rail against his friends and relatives, he attacked the legal and medical establishments. Bitterly he accused them of not caring about the suffering of those who were dying. In a last halfhearted effort to engineer his own death, he sent his friend's daughter out to the shopping mall to buy a copy of Final Exit. From that he learned about how you could take an overdose of sleeping pills and tie a plastic bag around your neck. But he realized that by now he was so weak he would need assistance to perform even these simple acts. So he tried once again to enlist our help. We were dismayed. Tying a bag around your head seemed the opposite of dying with dignity. Again, we tried as much as we could to avoid crossing him, by changing the subject whenever he talked suicide. Our stalling achieved the desired effect of putting things off until it was almost too late for him to arrange his own death. Contrary to his expectation his attending physician, a woman of considerable cheer and compassion, showed no propensity to help him do away with himself. So he had to fall back on his children. Was this deliberate? Had he left it this way because he knew he could count on us to say no? The thought only occurred to me weeks later.

By now he had been taking morphine pills for a couple of weeks, to control his pain. He told his best friend that if he couldn't get the sleeping pills recommended in Final Exit he would take a fistful of morphine pills instead. At this stage his children and close friends were worn out with anxiety and dread. His best friend, who happened also to be a nurse, had taken leave from her job to spend the better part of every day caring for him and trying to cheer him up. I, who had done some reading on the subject, summoned up my courage to confront him one last time. Have you considered just stopping eating, I asked him? Many people, when they are approaching death, lose interest in eating and refuse all food. You are nearing the end, I said. It will only be a few days. Your children, your grandchildren and your friends will all be terribly upset if you take your own life. Why not just let yourself slip away as others have done before you? Would that not be a dignified way to go? After all, nobody is trying to prolong your life, only keep you comfortable. He didn't bother to answer my all-too-cogent reasoning (cogent to me at least), but I did note that from that point on he virtually gave up eating.

By now his morphine dosage was greatly increased, and was being administered continuously in liquid form through a needle and ampoule strapped to his arm. This seemed to eliminate most of his discomfort and put him in a better frame of mind. The nurses who were with him now - both his friend and the ones supplied through the Home Care agency - handled him with a combination of tenderness and professional competence. He seemed almost pleased at the superb attention he was getting, and still managed to exchange jokes with them. Thanks mainly to the high standard of palliative care he received during his final week, he said nothing more about wanting to hasten his death. In the last three days he took only small quantities of water, mainly to moisten his mouth; his heartbeat accelerated, while his breathing became progressively faster and shallower. Finally, before dawn on a Friday morning his heart stopped beating. He had achieved the dignified death for which he had yearned so strongly.

***

Reflecting on these events a few years later, I am persuaded more than ever that taking one's own life, far from being a dignified way to die, is usually an act of despair, a statement that one feels bereft of comfort and solace. In his last weeks my father ran into the perplexing opposition of friends and family to his expressed desire for suicide. He was frustrated, too, by the refusal of medical professionals to give him any assistance in realizing this goal. But to his surprise he found himself encircled by the love of people who cared deeply for him and were also competent enough to suppress his pain, make him feel that he was at the centre of their attention, and to ease his passage out of this life. He died in peace and with dignity. If this fierce atheist, who was bound and determined that no one was going to stop him from enjoying the benefit of active euthanasia, finally abandoned his insistence on pursuing such a course, then I am convinced that the great majority of other individuals who think they would like to end their lives could be rescued by first-rate palliative care and the love of those close to them. The question is, do we want to make the sacrifices called for, so that people who want to can die at home, in comfort and dignity, but without the demeaning pressure to accept a lethal injection?

Notes

Note 1: See chapter 5, “Euthanasia and the Elderly”

Note 2: See chapter 4, “As Life Ends”

Note 3: See, for example, the articles by Elizabeth Latimer in the Journal of Pain and Symptom Management (July and November 1991); or any of the numerous writings of Dame Cicely Saunders.

Note 4: See Sue Careless, "Final Exit's author blamed for second wife's suicide," Christian Week, March 3, 1992, p. 7.

Note 5: Medische Beslissingen Rond Het Levenseinde. I: Rapport van de Commissie Onderzoek Medische Praktijk inzake Euthanasie. II: Het Onderzoek voor de Commissie Medische Praktijk inzake Euthanasie (Medical Decisions about the End of Life. I: Report of the Committee to Investigate the Medical Practice Concerning Euthanasia. II: Study Ordered by the Committee to Investigate the Medical Practice Concerning Euthanasia.) (The Hague: SDU Publishers, Plantijnstraat, 2 vols., 1991.) Also known as the Remmelink Report.


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