Euthanasia and Assisted Suicide:
The Current Debate

Table of Contents
Acknowledgements
Introduction
1.CHARTING THE LEGAL TRENDS
Euthanasia in Canada, the United States, and the Netherlands
Robert Nadeau
2. INVULNERABLE NOTHINGS
Sue Roderiguez and the Supreme Court of Canada
Ian A. Hunter
3. THE FINAL TABOO
Rethinking Death with Dignity
Ian Gentles
4. AS LIFE ENDS
Professional Care Givers on Terminal Care and Euthanasia
Elizabeth Cassidy, Barrie de Veber, Frank Henry, and Ian Gentles
5. EUTHANASIA AND THE ELDERLY
A Pilot Study
Frank Henry and Ian Gentles
6. FEAR AND FALSE PROMISES
The Challenge of Pain in the Terminally Ill
John Scott
NOTES
SUGGESTIONS FOR FURTHER READING
CONTRIBUTORS
INDEX


INTRODUCTION

Euthanasia and Assisted Suicide: The Current Debate is a contribution to the ongoing discussion of euthanasia and assisted suicide. Public opinion polls seem to indicate growing support for the legalization of both practices. Even the elderly, those most vulnerable to the abuses that any relaxation in the laws against euthanasia might bring in its train, seems supportive of euthanasia, as Frank Henry and I point out in chapter 5. For more than a decade the Netherlands has tolerated active euthanasia, in some cases even without patient consent. In November 1994 voters in the state of Oregon voted by a narrow margin (51 to 49 percent) to permit the practice of doctor assisted suicide under stringently controlled conditions. Before that voters in the states of Washington and California had turned down more broadly worded propositions to sanction assisted suicide. In Canada the Supreme Court rejected the request of Sue Rodriguez, suffering from Lou Gehrig's disease (ALS), to he allowed to enlist a physician to help her commit suicide. When MP Svend Robinson defied the law and made the arrangements she wanted, he was not prosecuted. Indeed, he was applauded in many quarters for a supposedly compassionate act. The Canadian Senate is currently holding hearings on euthanasia, and the government has promised a debate followed by a free vote in the House of Commons on whether to change the law.

Despite increasing public sympathy for euthanasia, there is widespread confusion as to what it signifies. Does it mean withdrawing or withholding medical treatment with or without a patient's request if death is thereby hastened? This is sometimes called passive euthanasia, and it is occasionally taken to refer to the individual's common-law right to refuse life-saving medical treatment in order to hasten their own death. When an unnamed woman in Quebec City suffering from Guillain Barre syndrome successfully fought for the right to order her respirator unplugged, this was widely interpreted as a victory for euthanasia.

Active euthanasia is usually taken to mean the administration of a poison or pain-killing medication in a dosage sufficient to kill the patient. What distinguishes such an act from murder is that it is done with the explicit or implied consent of the patient. Active euthanasia is illegal throughout the world, although in the Netherlands the law against it is no longer enforced. In other countries many believe that active euthanasia is carried out by medical personnel and legal authorities turn a blind eye. Assisted suicide is distinguished from active euthanasia in that the person must take deliberate steps to bring about his or her own death. Medical or other personnel may provide assistance, but the act of suicide is committed by the patient. It is this practice that was approved narrowly by the voters of Oregon in 1994 and prohibited narrowly by the Canadian Supreme Court the previous year.

There is yet another version of euthanasia, which so far has won only limited acceptance. It entails killing or withdrawing treatment without the patient's consent, but supposedly in their best interests. As Robert Nadeau and I show in chapters 1 and 3, it is more widely practised in the Netherlands than some would like to believe and has been conceptualized in American jurisprudence under the phrase "substituted judgment." This refers to the practice of deciding on behalf of a patient who is comatose or otherwise unable to give consent that further medical treatment is useless and ought to be withdrawn. This concept was applied in the case of Karen Quinlan, whose parents were granted permission to order the withdrawal of medical treatment from their daughter after she had been in a prolonged coma. To everyone's surprise she continued living for another decade. Recently in Canada, the concept of "substituted judgment" has taken on a sinister aspect. In the fall of 1994 a Saskatchewan farmer killed his 12-year-old daughter with the exhaust from his pickup truck. The death of the girl, a longtime sufferer from severe cerebral palsy, resulted in the man's being convicted of second-degree murder. Yet many people, seeing the father's action as compassionate, approved of what he had done and called for a change in the law. The girl's life was not worth living, they said, and the man was to be applauded for deciding on her behalf that this was so. His conviction is currently under appeal.

In striking contrast to the drift of popular opinion are the views of those who study the ramifications of the issue, or those who are professionally involved in the medical and legal dimensions of the euthanasia question. At the beginning of the referendum campaigns in the liberal states of Washington, California, and Oregon, public opinion polls showed large majorities in favour of legalizing assisted suicide. On voting day, having listened to the arguments on both sides, citizens in the first two states solidly rejected the proposition, while in Oregon they approved it only by a paper-thin margin under the most strictly defined circumstances. One reason for the turnaround in those jurisdictions where people were actually called upon to make a decision was a deepening concern about what has happened in the Netherlands. Within a decade that country has witnessed a rapid progression from voluntary euthanasia to involuntary euthanasia affecting several hundred people a year. More worrying still, as a writer in the New York Times recently commented, "Virtually every guideline established by the Dutch to regulate euthanasia has been modified or violated with impunity." Equally, care for the terminally ill seems to have suffered in the Netherlands, and progress in pain management has lagged.(1)

In light of these and other findings the New York State Task Force on Life and the Law unanimously recommended last year that New York's laws prohibiting assisted suicide and euthanasia should not be changed.(2) In Britain a committee of the House of Lords made the same recommendation, also without a dissenting voice. And in 1994 the annual convention of the Canadian Medical Association voted to "specifically exclude" its members from participation in euthanasia or assisted suicide.(3) In chapter 4 Elizabeth Cassidy, Barrie de Veber, Frank Henry and I report on a large-scale study of North American health-care professionals involved on a daily basis in the care of the terminally ill. It found that almost three-quarters of them think direct killing is unethical, while two-thirds do not think that the ending of terminally ill patients' lives at their request should be accepted practice in palliative-care units.

Much of the informed opposition to legalizing euthanasia and assisted suicide flows from a practical concern about the abuses that will almost surely arise, and about the real difficulty of distinguishing compassionate mercy killing from murder. This is largely the perspective of the Law Reform Commission of Canada, which has consistently opposed the legalization of euthanasia. Matters of principle are also at stake. In the Western world it has long been accepted that the state has a legitimate interest in upholding the unconditional value of every human life. In this connection it is worth quoting the ringing statement of Justice John Sopinka of the Supreme Court of Canada: "The active participation of one individual in the death of another is intrinsically morally and legally wrong."(4)

Much of the apparent public support for euthanasia stems from confusion about what the term means. Does it mean patients' having the right to refuse life-saving medical treatment? Does it mean their having the right to order the cessation of treatment? To have respirators unplugged, tubes unhooked, medication halted? Many people seem unaware that there are at present no legal barriers to such steps being taken and virtually no opposition from within the medical profession. But there is a world of difference between passive euthanasia, in which the dying process is allowed to occur unimpeded by human intervention, and active euthanasia, in which death is brought about by lethal injection or other means.

Another source of public confusion has to do with pain control. Many people have a horror of being kept alive in a state of intolerable pain. Many people support the legalization of euthanasia for this reason alone. Yet health professionals tell us that only in very rare circumstances should it be necessary for a dying patient to suffer uncontrollable pain. As John Scott reveals in chapter 6 there is no reason why anyone should die in pain. Not only that, as the Canadian Medical Association has pointed Out, where euthanasia is easily available palliative care and pain management suffer.

Linked to the public confusion about the problem of pain is the misconception that narcotics frequently - whether intentionally or not - are a cause of death in terminal patients. Yet it is well-known among professionals that such death are very rare. Patients being treated for extreme pain build up a tolerance for the narcotic. A dosage that might kill a normal patient is not an overdose for a normal cancer patient.

A final misconception about the care of the terminally ill is the notion that withholding food and water (nutrition and hydration) from dying patients is tantamount to active euthanasia. But a person approaching death has no appetite for food and typically desires water only to keep his or her mouth moistened. In chapter 4 we reveal that most health professionals agree that patients who are allowed to die without artificial hydration and nutrition may be as comfortable or more so than patients who receive conventional amounts of both.

The argument of this book may be summed up in a few sentences. We need to tread very carefully before deciding to take the road that leads to legalized euthanasia or assisted suicide. No one should be kept alive against his or her will, but by the same token, no one has the right to require others to bring about death. Legally permitted euthanasia and assisted suicide would not only imperil the care of the terminally ill, it would fundamentally undermine the respect for human life on which the health of society depends.

CHAPTER 1

CHARTING THE LEGAL TRENDS

CONCLUSION

(Robert Nadeau)

The questions raised in this difficult debate are enormously diffuse and complex. They do not permit easy answers. The Law Reform Commission of Canada has erected the parameters and charted a course for a responsible public policy that deserves careful and immediate attention as the need to close the gap between law and practice becomes more pressing. Exactly what shape any future law will take is difficult to say. Politics is not always governed by principle. Nonetheless, it is possible to discern some of the trends that will likely form the assumptions on which future legislation in Canada will rest.

For one thing, the explicit recognition of absolute personal autonomy in the criminal law for fully informed and competent patients capable of expressing individual treatment decisions is a practical certainty. For another, the present legal uncertainty as to whether heroic treatment must be continued in all cases once started is very likely to be resolved by adoption of the principle that any form of medical treatment (from which is excluded ordinary care) can be discontinued in any case where treatment is considered to be medically useless and not in the best interests of the patient.

Active euthanasia, despite recent opinion polls (104), is not likely to become an accepted practice in Canada in the foreseeable future. The firm and unequivocal rejection of active euthanasia by the Law Reform Commission and by professional medical bodies in Canada and the United States have reaffirmed Canada's traditional respect for human life and dignity. While this view is not shared by all the commentators, it is one that deserves and requires repeated and uncompromising affirmation.

One issue likely to loom large in any future debate in Canada is whether the right to refuse medical treatment includes the right to refuse ordinary care, such as food and water. Although the Commission would apparently grant this right to competent patients capable of making their own informed decisions, it is unlikely the Commission would extend this reasoning to incompetent patients who, by definition, are incapable of making such a decision. Whether evidence of a prior statement (for example, a "living will") would soften the law's resistance to the termination of ordinary care remains an open question.(105)

Whatever direction the law does take, clearly it must attempt to balance the competing principles of personal autonomy and the protection of human life. It must not allow questionable legal fictions or private interests to erode the fundamental values and principles that define the very character and essence of Canadian society. Professor Gerry Ferguson accurately summarized the challenge of any future law reform in these words: "The challenge in any such reform is to uphold respect for the sanctity of all human life, while being careful at the same time to recognize human autonomy, dignity and privacy, and not to force any unnecessary prolonging of an inevitable death."(106) It is hoped, as these issues are more fully and openly debated in the next few years, that these principles will be kept clearly in mind and that the structure of any future law will be built upon a firm presumption in favour of life.

CHAPTER 2

INVUNERABLE NOTHINGS

Sue Rodriguez and the Supreme Court of Canada

(Ian A. Hunter)

He hath awakened from the dream of life -
'Tis we who lost in stormy visions, keep
With phantoms an unprofitable strife,
And in mad trance, strike with our spirit's knife
Invulnerable nothings.

Percy Bysshe Shelley,
Adonis, XXXIX

In 1980 Canada turned its back on a century of legal history, on its customs, conventions, and traditions. In that year we abandoned parliamentary supremacy for constitutional supremacy, emasculated our legislators and transformed our judges into philosopher-kings. From that year on we required our citizens to bow, not to Cod, king, or country, but to a Charter of Rights and Freedoms, born of political expediency. It is not surprising then that unlikely, even bizarre, cases, which once would have been summarily dismissed, would come to govern life-and-death issues. Even so, it still would have required a percipient observer to guess that the tragic fate of a 42-year-old British Columbia woman suffering from amyotrophic lateral sclerosis (Lou Gehrig's disease) would come within a single vote of inducing the Supreme Court of Canada to create a constitutional right to be put to death.(1)

Section 241 of the Criminal Code of Canada makes it an indictable offence to counsel, aid, or abet anyone to commit suicide.(2) Since 1972 attempted suicide has not in itself been a criminal offence in Canada.(3) Sue Rodriguez had no wish to counsel, aid, or abet anyone to commit suicide. What then was the basis for her attack on section 241? Simply, she wanted someone to violate that law by assisting her to die, and she wanted a declaration of judicial immunity in advance.

It is important to note that at no stage in the protracted litigation did Sue Rodriguez actually wish to die. Rather she wanted to wait until she was no longer able to enjoy life, at which time, because of the inexorable physical degeneration that characterizes Lou Gehrig's disease, self-destruction would be beyond her. What she sought was a court order that would allow someone, preferably a physician, to provide the means and to assist her in taking her life at a time of her choosing. This is what is called "dying with dignity." Fifty years ago Sue Rodriguez would have sought solace from a priest; 20 years ago, from a doctor; today, from a lawyer.

Rodriguez's challenge to section 241 of the Criminal Code was based on three sections of the Charter:

.7 Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice.

.12 Everyone has the right not to be subjected to any cruel and unusual punishment.

.l5 (1)Every individual is equal before and under the law and has the right to equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

The Supreme Court was unanimous, and uncharacteristically brief, in rejecting the section 12 challenge. A statutory prohibition on assisted suicide does not, even in the Alice in Wonderland world of Charter-speak, amount to compulsory treatment, still less to state imposition of cruel and unusual punishment.

There was no unanimity, however, on sections 15 and 7.

Only Chief Justice Lamer, dissenting from his eight fellow justices, held that section 241 contravened section 15. The discrete group or class of persons (essential to a section 15 analysis) he held to be those persons suffering from such a serious physical disability that they are, or will become, unable to commit suicide without assistance. Is this a burden or disadvantage? Yes, according to the chief justice, because "it limits the ability of those who are subject to this inequity to take and act upon fundamental decisions regarding their lives and persons. For them the principle of self-determination has been limited. "(4)

Cited, and heavily relied upon by all judges, was the Supreme Court's earlier abortion decision, R. v. Morgentaler,(5) which had the effect of legalizing abortion on demand in Canada. It was to be expected, perhaps, that a court which ceases to regard the unborn as deserving of legal protection will evince scant moral repugnance at suicide. In Morgentaler, the Supreme Court dismissed the notion that human beings are creatures made in the image of a Creator and chose instead to accept a view of humanity as self-willed, autonomous individuals making "choices" without regard to "archaic" concepts like good and evil. Having accepted the "right to choose" abortion, it should surprise no one that, within a decade, four Supreme Court judges were prepared to countenance a right to choose suicide.

The secular wasteland in which the Supreme Court struggles to articulate "values" is perfectly captured in these words of Chief Justice Lamer:

Can the right to choose at issue here, that is the right to choose suicide, be described as an advantage of which the appellant is being deprived? In my opinion, the Court should answer this question without reference to the philosophical and theological considerations fuelling the debate on the morality of suicide or euthanasia. It should consider the question before it from a legal perspective . . . while keeping in mind that the Charter has established the essentially secular nature of Canadian society.(6)
Forgotten, or ignored, is the Charter's preamble, which acknowledges "the supremacy of God" and the first of the "fundamental freedoms" freedom of religion.(7)

Having found a violation of equality rights, Chief Justice Lamer next considered whether section 241 might be saved under section 1 as a "reasonable limit ... demonstrably justified in a free and democratic society." The legislative objective of section 241 (deterring others from assisting the young, the innocent, the mentally incompetent, or otherwise vulnerable from taking their own lives) is, he conceded, a valid one, but must yield to the more important principle of "self-determination." Can it be said, the chief justice asked rhetorically, that when Parliament removed the prohibition on attempted suicide in 1972 it intended ". . . to acknowledge the primacy of self-determination for physically able people alone?(8) One blushes even to quote such fatuity. One could be forgiven for imagining that Chief Justice Lamer writes here of lottery benefits or government social assistance, rather than self-annihilation. Parliament removed attempted suicide as a criminal offence in 1972 because only the unsuccessful could be prosecuted. To read back the victim-equality obsessions of the ideological '90s to the more innocent '70s is to engage in what Samuel Johnson called "nonsense on stilts."

Chief Justice Lamer next holds that section 241 fails the "minimal impairment" component of the by now wearisome Oakes(9) test. While acknowledging a potential for abuse, Chief Justice Lamer insists that the suicide option must be available to all equally. But, in typical Canadian fashion, he strives to find a compromise, a "middle ground" between the absolute prohibition of section 241 and "complete decriminalization." He propounds an intricate regulatory scheme for determining when people may lawfully assist other people to kill themselves. How very Canadian! Yet judges who find a criminal prohibition on assisted suicide offensive to human liberty would no doubt uphold a mandatory requirement to wear a bicycle helmet.

All the other judges in Rodriguez rest their decision on section 7. All concur in finding section 241 an infringement of the "security of the person" guarantee in section 7.

Madam Justice McLachlin's dissent cites Morgentaler as establishing "the right of each person to make decisions concerning his or her own body."(10) From this derives "the autonomy interest of those who wish to end their own lives."(11) I shudder to contemplate the trivial conception of human life that judges display. No God, no soul, no good and evil, no right or wrong, just consumers making choices, including the choice to die. The trick, as both Morgentaler and Rodriguez demonstrate, is to convert moral issues into consumer choices. "No man is an island entire of himself," wrote John Donne. "Any man's death diminishes me because I am involved in mankind."(12) Our judges are not involved in mankind; they are involved in vapid rights talk.

None of the dissenting judges shows much respect for, or deference to, Parliament, the assembly we elect periodically to decide what should and should not be a crime. True, Justice McLachlin cites two Appeal Court judges who appealed for restraint,(13)but she goes on to assert that "as a matter of constitutional obligation, a court faced with a Charter breach may not enjoy the luxury of choosing what it will and will not decide."(14) This statement is transparent question-begging. It is precisely on the issue of whether or not the Charter has been breached that judicial restraint is called for.

The hard edge of reality in Justice Sopinka's majority opinion comes as a welcome oasis after the aridity of the dissents.

Justice Sopinka begins by noting two practical effects of the dissents: first, these judges would recognize a constitutional right to assisted suicide more extensive than any recognized, or even seriously advocated, in the Western world; second, the safeguards proposed by Chief Justice Lamer are "vague, and in some respects unenforceable."(15) Also, "since many in the medical profession are opposed to being involved in assisting suicide because it is antithetical to their role as healers of the sick, many doctors will refuse to assist, leaving open the potential for the growth of a macabre specialty in this area reminiscent of Doctor Kevorkian and his suicide machine."(16)

Justice Sopinka accepts that section 241 "impinges upon" the "security interest" of Sue Rodriguez; but he holds that such impingement is not contrary to the principles of fundamental justice. Alone among the Supreme Court judges, Justice Sopinka considers "sanctity of life" as a principle of fundamental justice, even referring to "a generally held and deeply rooted belief in our society that life is sacred and inviolable."(17) He then quickly adds that he means "sacred in the nonreligious sense," citing Dworkin A.D. 1993.(18) rather than Moses(19) circa 1500 B.C. as acceptable authority:

Section 241 (b) has as its purpose the protection of the vulnerable who might be induced in moments of weakness to commit suicide. This purpose is grounded in the state interest in protecting life and reflects the policy of the state that human life should not be depreciated by allowing life to be taken. This policy finds expression not only in the provisions of our Criminal Code which prohibit murder and other violent acts against others notwithstanding the consent of the victim, but also in the policy against capital punishment and, until its repeal, attempted suicide. This is not only a policy of the state, however, but it is part of our fundamental conception of the sanctity of human life.(20)
Justice Sopinka is the only judge who appears to recognize the fundamental distinction between active and passive euthanasia. Subject to considerations of age and competency, a patient may decline even life-sustaining treatment.(21) A physician may, for palliative purposes, administer a drug the effect of which may be to hasten the patient's death. Such situations are distinguishable from active euthanasia, where a physician assists a patient for the purpose of bringing about that patient's death. The distinction lies, as it does so often in the criminal law, in intent. A physician who continues life-sustaining treatment against a patient's express instruction commits a battery.(22) The physician who administers drugs designed to ease pain, even though a side effect is to hasten death, does so with the intent not of causing death but o reducing suffering. Justice Sopinka acknowledges that "factually the distinction may, at times, be difficult to draw," but "legally it is clear."(23)

Justice Sopinka asserts that no scheme of regulation, short of absolute prohibition, can protect against abuse. To permit a physician lawfully to participate in taking life "would send a signal that there are circumstances in which the state approves of suicide.(24) But first, last, and foremost, Justice Sopinka reiterates that "the active participation of one individual in the death of another is intrinsically morally and legally wrong."(25)

It seems likely that public opinion is today more receptive to active euthanasia than it once was.(26) In part this is because our culture emphasizes choice and self-determination. All of us face the inevitability of death, and all of us fear the debilitation and dependency of crippling disease. Many Canadians have resorted to "living wills," because we fear being kept alive in a hospital or nursing home, our span of life artificially stretched beyond the point anyone would choose to endure. Death, and the process of dying, have become timely issues.

In a recent thought-provoking book(27) Daniel Callahan advances three explanations for the increasing public receptivity to euthanasia and physician-assisted suicide. First, technological man has come to think of death not as a natural, contingent event, life's culmination, but rather as a reproach to medical inadequacy. The medical establishment wages "war" on diseases, with frequent public appeals for funds to find a cure; death seems a lost battle in a larger, ongoing struggle. The unspoken logic of this warfare is a quest for immortality, not immortality beyond flesh and time, but here and now. Second, medical technology blurs and eventually erases the distinction, fundamental to the common law, between act and omission, between taking life and allowing to die, between malfeasance and nonfeasance. Finally, medical science has appropriated the vocabulary of sanctity of life. The physician who violates the Hippocratic oath by killing rather than treating his patient, whether by the crude technology of the Kevorkian death machine or the modern pharmacopoeia, speaks nobly of "death with dignity." Death by disease, to a generation which cannot accept human finitude, comes to seem a affront, and the physician who foreshortens life wraps himself in the rhetoric of "human rights." In the process, moral distinctions are first blurred, then effaced. We must remember, to quote Callahan, that "human life had value before technology came along, and if death is an insult to the human condition, that insult requires a spiritual, not a scientific remedy. "(28)

In most cultures, questions concerning death and its significance are openly acknowledged to be spiritual questions. Only in Canada could one find a chief justice promising to consider life and death "without regard to philosophical or theological considerations" and another justice writing of "sacred . . . in the secular sense." The Charter of Rights, as currently interpreted, precludes religious and spiritual insight on the ultimate questions of human existence.

All the world's great religions consider that life has a sanctity not merely because it exists but because it is a gift from a Creator, the vital source of life. It is a gift held in trust, which, ultimately, must be surrendered back. It is not that the Supreme Court of Canada has considered and rejected such a view; rather, the view is rejected in advance as an illegitimate consideration in the secular Canadian society supposedly mandated by the Charter.

As Therese Lysaught said to the symposium on "The Sanctity of Life":

Human persons have become idols, worshipped as ends in themselves, cut off from any sort of context that might provide them with meaning. We don't know who we are, we don't know how to live (well), we don't know how to talk together about these questions, and we don't know how to die. This is precisely a spiritual crisis.(29)
It would be going too far to say that Justice Sopinka's judgment in Rodriguez speaks to this spiritual crisis. But, alone among the judges, he seems at least vaguely aware that there is another dimension, another view of the human condition, above and beyond a legal view.

Mr. Justice Sopinka has here established himself as a judge with moral convictions, unafraid to articulate and defend them, and prepared to rest his decision upon them. If there is hope for even a partial recovery from the morass of Charter Politics ~ it lies here. As for Sue Rodriguez, all who face the inevitability of death, and that means everyone, must have felt the deepest sympathy for her plight, no less than did Edgar for his stumbling, blind, and suicidal father, when he counselled:

What in ill thoughts again? Men must endure
Their going hence, even as their coming hither;
Ripeness is all.(31)

CHAPTER 4

AS LIFE ENDS

Professional Care Givers on Terminal Care and Euthanasia

(E. Cassidy, B. de Veber, F. Henry, and I. Gentles)

CONCLUSION

This study of palliative-care professionals clarifies the ideas and attitudes regarding the care of terminally ill patients of the men and women who are actually involved in such care on a daily basis. The great majority believe that modern palliative-care methods can control the pain of all, or nearly all, terminally ill patients without significantly shortening their lives. In the comparatively rare instance where a patient's life might be shortened by large doses of narcotics, most professionals agree that it would be ethical to prescribe the narcotics if the primary purpose is to relieve pain and the patient has made an informed choice. Most also agree that patients who are allowed to die without artificial hydration and nutrition may die at least as comfortably as those who receive conventional amounts of artificial hydration and nutrition. Some, however, believe that this applies only to artificial feeding. The responses to these questions are related in that those who indicate that pain is controllable and that lives are not shortened by the appropriate use of narcotics are more likely to agree that patients may die in comfort without the administration of artificial hydration and nutrition.

With regard to medical procedures, a large percentage of palliative-care professionals agree that it is ethical to stop or forgo medical procedures at the request of a terminally ill, mentally competent patient if the illness is progressing and there is very little chance of halting its progress or restoring the health of the patient. A number of professionals note that a mentally competent patient has the legal right to refuse any treatment. They also agree that it is ethical to stop or forgo medical procedures at the request of next of kin when a patient in a persistent vegetative state has left no instructions regarding treatment or nontreatment. Somewhat fewer care givers, but still a clear majority, believe that it is ethical to stop or forgo medical procedures at the request of next of kin for a patient who is conscious but irreversibly demented and who has left no instructions regarding treatment or nontreatment. For all three types of patients, care givers are most likely to agree that it is ethical to stop or forgo CPR, major surgery, chemotherapy, and artificial respiration, and least likely to agree that it is ethical to stop or forgo antibiotics and artificial hydration.

Those professionals who agree with stopping or forgoing all eight procedures are more likely to be physicians, younger males, and non-Canadians, and also to have been brought up in a religion other than Catholic and not to attend religious services. Those who agree with stopping or forgoing all eight procedures listed in the questionnaire are more likely to agree that patients may die as comfortably without as with artificial hydration and nutrition.

A substantial majority of palliative-care professionals oppose euthanasia. This is most clearly shown in response to the question "Is there an ethical difference between allowing a patient to die by stopping or forgoing medical procedures and bringing about a patient's death by means of a lethal injection or in some other painless way?" Three-quarters of the professional care givers state, "Yes, direct killing is unethical." However, a number also note that they are torn between the belief that direct killing is morally wrong and the belief that it might be more humane in some instances than allowing a patient to die by withholding medical procedures. A clear majority are also opposed to the legalization of euthanasia and to its acceptance in palliative-care wards. In reply to the question concerning the right of medical personnel to end a terminally ill patient's life at the request of next of kin, approximately ten times as many professionals indicate that a physician or nurse should not have this right as indicate that they sometimes should. As to whether a nurse or physician should have the right to refuse a request from next of kin to end the life of a terminally ill patient, nine out of ten professionals think that they should have the right to refuse. With regard to the possible effects of legalizing euthanasia, most care givers believe that patients' trust in physicians and nurses might decline and that the power might be greatly abused, but they are evenly divided over whether medical progress in palliative care would slacken.

Physicians are most opposed and members of nonmedical professions least opposed to euthanasia. On all question concerning euthanasia physicians and nurses are in close agreement.

In brief, the majority of palliative-care professionals believe that:

  • patient pain can be controlled in nearly all instances with modern palliative-care methods;
  • withholding medical procedures from terminally ill patients is ethical on condition that the request is made by a mentally competent patient or by the next of kin for a patient who is in a persistent vegetative state or who is conscious but irreversibly demented and on condition that no contrary instructions have been left; and direct killing is unethical (only one in four thinks that euthanasia should be legalized, and only one in five favour its becoming an accepted practice in palliative-care wards).
There is a prevalent misconception among the public and some health-care professionals that patients who do not have artificially maintained hydration and nutrition will die less comfortably than those who do. Most care givers are aware that dying patients do not normally need artificial hydration or nutrition. But 30 percent are uncertain or think that these treatments are necessary to keep a dying patient comfortable. Canadian care givers appear less experienced and well educated in this area than their colleagues from other countries. Those who are aware that it quite possible to die comfortably without artificial nutrition or hydration are also more apt to support forgoing all eight procedures than those who lack this awareness. Moreover, those experienced in dealing with dying patients are usually more willing than those with less experience to omit life-prolonging measures. Doctors especially ate significantly more likely to approve stopping or withholding medical procedures from competent terminally ill patients than nurses or other health-care professionals.

The belief and fear that pain in the terminally ill cannot be controlled is refuted in this study. Doctors and nurses in palliative care have observed that pain can be controlled in almost all patients. This finding diverges so sharply from conventional wisdom that the public deserves to be informed of it.

Finally, in spite of widespread public support, which includes many of the elderly themselves, for legalized euthanasia, the great majority of those who care for the dying on a daily basis do not favour its legalization and tend to believe that medical/scientific progress in palliative care would slacken if euthanasia became accepted legal practice.

RECOMMENDATIONS

  1. Medical professionals should promote greater public awareness of the fact that extreme pain can be controlled in almost all terminally ill patients.
  2. Government agencies responsible for health should continue to support research in the field of pain control and palliative care.
  3. Medical professionals should promote greater public awareness of the fact that patients' lives are seldom shortened by the appropriate use of narcotics to control pain.
  4. All palliative-care professionals, especially in Canada, should be educated to the fact that patients who are allowed to die without artificial hydration and nutrition may die as comfortably or more comfortably than patients who receive conventional amounts of artificial hydration and nutrition.
  5. Existing laws against euthanasia should be maintained.

CHAPTER 6

FEAR AND FALSE PROMISES

The Challenge of Pain in the Terminally Ill

(John Scott)

The Scope of the Problem

In advanced cancer and other terminal disease, tumour cells and toxins can irritate and compress pain receptors in nerve, bone, and soft tissue. This signal sets off a cascade of biochemical interactions and activates complex electrical circuitry in the nervous system.(1) Recent research confirms, however, that pain is a somatopsychic experience, being not only a sensation (a conscious awareness of a noxious stimulus), but also an emotional experience with intense feelings of displeasure resulting in a set of behaviours.(2) Pain is always subjective. It remains what the patient says it is and not what others think it ought to be. Pain is never stationary but always moving with time and circumstances. Referred to by Aristotle as "a passion of the soul," it is best compared to hunger and thirst need states that go beyond sensation and involve the imperative for action. As we face pain, both at an individual level and a societal level, we discover this characteristic demand for action.(3)

We all must die. But if I can save him from days of torture, that is what I feel is my great and ever new privilege. Pain is a more terrible lord of mankind than even death himself.

Albert Schweitzer (4)

To focus attention on the complexity of pain as both a biological and a psychological experience, Saunders coined the term "total pain."(5) Anger, anxiety, depression, and a host of other psychosocial factors lower a patient's pain threshold, that is, the same noxious stimulus from the same tumour will cause more pain. On the other hand, positive outlook, a supportive family, empathy from nurses and physicians, forgiveness, diversion, and sleep will all raise the pain threshold and decrease the pain experience.

While the prevalence of pain is relatively low in many terminal diseases, it remains moderately high in cancer, with approximately 66 percent of patients with advanced disease requiring treatment for pain relief.(6) Nonetheless, one-quarter to one-third of cancer patients never experience pain. Because of the rapid aging of the Canadian population and because of advances in disease therapy, which have led to longer periods of survival with metastatic illness, it is predicted that pain in advanced disease will increase by at least 50 percent in this decade.(7) However, in the past 25 years, we have witnessed major breakthroughs in our capacity to relieve pain. The World Health Organization has demonstrated that access to pain-relieving drugs, along with a simple educational program, can achieve relief in the vast majority of patients.(8) Specialists in various parts of the world estimate these basic approaches can control 85 to 98 percent of cases.(9) The remaining cases require more careful attention and the use of multiple drugs and therapies to achieve complete relief. The technology and expertise to deal effectively with the problem of pain has already been developed. Poor pain relief, when it exists, can usually be traced to problems of education and resource allocation.(10) Pain remains unrelieved because of

  • a lack of knowledge diffusion about analgesics or other strategies to control symptoms
  • inappropriate attitudes and fears in the health-care team and in the public
  • lack of access and/or availability of appropriate services
Canada is viewed as an international pioneer and leader in the control of the pain associated with terminal disease. Other countries use our policies as models, and the Canadian system of palliative care is emulated worldwide. Access to the drugs needed for pain relief is excellent and, when necessary, Canadian physicians demonstrate boldness in their use of narcotics. In the period 1984 to 1992, there was a 300 percent increase in the use of opioids (drugs that mimic the pharmacological properties of opiates) in Canada - one of the highest increases in WHO statistics.(11) Granting agencies' new interest in pain research and the new Canadian Cancer Pain Network are expected to issue in a set of further advances in our capacity to relieve pain. A new medical discipline, palliative medicine, has emerged that will further push the frontiers of symptom control. This is already a recognized specialty in the U.K. and Australia, and training programs have been developed in Canada.(12) Published in 1993, the 845-page Oxford Textbook of Palliative Medicine highlights the rapidly growing sophistication and exciting new opportunities to relieve suffering and enhance the quality of life for the dying.(13) We must unmask the deception that there is nothing more that can be done.

PALLIATIVE CARE

What is palliative care and how does it relieve total pain? Following are the things palliative care is not:

  • It is not the withdrawal or absence of acute medical care.
  • It is not merely volunteer hand-holding when nothing more can be done.
  • It is not sedation or the hastening of death through gradual increasing of drug dosages.
  • It is not passive euthanasia.
Health and Welfare Canada defines palliative care as "active compassionate care directed towards improving the quality of life for the dying."(14) First introduced into Canada in January 1985, specialized programs of palliative care now exist in more than 500 hospitals and agencies across Canada.(15) Palliative care involves a commitment to decrease suffering and to increase the quality of life (that is, to enhance the substance and not the length of life) when illness is no longer responding to curative or prolongation therapies. Palliative care is a philosophy and a system of care that affirms life when a person with irreversible disease is approaching death. It is care that enables a person to live as fully as possible until he dies.

The cornerstone of palliative care is excellence in the assessment, analysis, and management of pain and symptoms, but its essence includes whole-person, compassionate, and personalized care, which focuses nor only on the physical but also the psychological and spiritual dimensions of life. The philosophy of palliative care is patient-centred, enabling the patient's agenda to be preeminent. Palliative care is family-centred, reflecting an even greater revolution than the one experienced in obstetrics. It means that the process of dying and the event of death can be restored to the family. Palliative care is committed to a multidisciplinary approach, which includes the use of volunteers from the community. Palliative care should be delivered in a number of sites - home whenever possible, but when an institution or professional facility is needed, a homelike environment must be created.

Palliative care is practised in the context of advanced cancer, acquired immunodeficiency syndrome (AIDS), and the end stage of other diseases. Palliative care involves a shift in treatment goals. When cure is no longer possible and when attempts to prolong life become increasingly ineffective, this should result in a cessation of some disease-oriented therapies and the initiation of new symptom-directed ones.

In palliative care we assist colleagues as they come to recognize that a disease is irreversible and death is near. Certainly, in these circumstances, we encourage withdrawal of any investigations or treatments that are no longer achieving their intended purpose. Often their continuation may be simply a frantic - and futile -attempt to hold back death. However, in these situations, cessation of therapy does not constitute "passive euthanasia." Death is not the intended purpose of the withdrawal or withholding of treatment. Death would come with or without the therapy, and often the withdrawal of therapy has little effect on the timing of death. Our society believes the lie that modern medicine controls the quality and timing of death and life. In reality we control very little. Our ability to resuscitate, prolong, and cure is partial and transitory. This illusion of control over disease has fuelled society's demand for control over death.

Most Canadians may be shocked to learn that the professionals involved in the bedside care of the dying are strongly opposed to the legalization of euthanasia and assisted suicide. (See chapter 4.) The Canadian Palliative Care Association, representing the approximately 500 formal programs in our country, has forcefully stated its opposition to the legalization of euthanasia and called for the provision of effective, accessible palliative-care services.(16) Every Canadian and international association and forum dealing with palliative care, including the World Health Organization's Cancer Pain Relief and Palliative Care Program, has expressed opposition to such legislation. (17,18) Those professionals who focus their careers on relievmg terminal suffering believe that euthanasia is not an answer to pain.

Advocates for assisted suicide falsely accuse palliative care of promoting a slow and prolonged form of death through sedating drugs, and many patients fear that pain relief can be achieved only if they are willing to accept sedation. Regretfully this misunderstanding has been aggravated by the sloppy, inaccurate use of language by physicians and nurses. Based on nineteenth-century views of pharmacology, pain-relieving drugs are often still referred to as "sedatives." However, in the vast majority of cases, the pain and symptoms of advanced disease can be relieved without a major impact on the level of consciousness. In severe or complex cases, pain is frequently accompanied by multiple organ-system changes, which can result in problems of confusion and decreasing alertness. It is important to understand that these are caused by the disease and not by the pain therapy. In some cases, once the pain has been relieved, the sleep deprivation caused by the pain leads to a period of increased sleep and temporary drowsiness. In a few others, the goal of pain relief requires drugs at doses associated with decreased level of consciousness. Frequently these drug-induced changes in brain function are partial and temporary, and are clearly only side effects, not the goal of treatment. There is close to universal ethical approval of the bold use of pain-control measures even if their use risks decreasing the period of survival. Yet palliative-care experience shows this situation to be extremely rare. The drugs for pain 'relief are very safe. Palliative-medicine specialists do not agree that good pain relief shortens life. Pain relief without sedation is a central and achievable goal of palliative care.(19)

At the same time, we must be very careful about making false promises about palliative care, especially promises made as a result of feeling trapped within an artificial framework of media debate. Increasingly the media ask if palliative care can promise the total eradication of suffering. Clearly palliative care is committed to the relief of suffering. Yet, despite rapidly increasing expertise, it would be foolish to imagine that any system of medical care, whether for terminal, chronic, or acute illness, can promise total abolition of suffering. The goal of pain relief can easily be twisted into an obligation to eradicate all suffering at whatever cost - even if it is necessary to precipitate death in order to achieve this "relief."

In the development of palliative care we must recognize a further danger. We are witnessing a serious polarization that arises when conservative pro-life forces naively and sometimes arrogantly push for a "pure" stand for life. This often ends in a legalistic and simplistic approach to protecting life against any hint of euthanasia, including the refusal of any withdrawal of therapy. In its extreme form, it counsels against ever saying no to CPR or removing respirators. In the area of palliative care, it condemns the discontinuance of intravenous therapy in the last days of life. There is good evidence that pushing fluids into a body where there is a multiple organ failure only increases suffering, augmenting shortness of breath, as well as vomiting and swelling. The use of intravenous therapy does not seem to affect how long a person survives when the reason for deterioration and for decreased drinking by mouth is the underlying disease. Behind the legalistic approach to never stopping a therapy, one senses fear and the resulting drive to control. Choices about CPR, respirators, and intravenous procedures in the last weeks of life should not be viewed as choices for death. We must not tie these decisions to the term "euthanasia." One can affirm and treasure life to the last moment without frantically trying to prolong the days.

MEDIA PORTRAYAL OF DEATH

How do Canadians die? For decades, the media have bombarded us with dramatic stories of violent, bloody, and sudden death. Daily televised newsreel images of war victims and fictional depictions of multiple murders dull our sensitivities and blur the line between reality and make-believe. The modern health system shields us from the scenes of real death that once occurred in the family home. In the past five years we have witnessed a new form of death-sensationalism. Highly selective and emotive vignettes and media clips have been utilized to portray dying as a painful process that robs us of dignity and control. As a result, many caring citizens have come to believe that prevention of unbearable suffering for the terminally ill requires the legislated right to euthanasia. We are being told that the only real choice facing a person with terminal illness lies between a quick and easy death by assisted suicide or a slow, painful, and meaningless death by disease progression. The Netherlands experience shows that poor pain control is rarely a cause for requesting euthanasia. Nonetheless, Canadians who support some form of physician-assisted death do so only because they believe that significant numbers are being forced to face death in unrelieved pain.

In reality, there is solid evidence that

  • the pain of advanced disease can be relieved with existing drugs and techniques (20)
  • the other psychological and physical problems of dying can be well managed by palliative care (21)
  • the dying are not being kept alive, by means of tubes and machines, against their wishes (22)
  • most deaths occur gently without agitation or distress (23)
  • the option of euthanasia is not seen as necessary or desirable by the frontline doctors and nurses caring for the terminally ill. (24)
Somehow we must tell the other side of the story to the people of Canada. The cry for euthanasia is not arising from the bedside of the dying but from powerful minority political groups.

DEPRESSION AND COMPETENCE

Euthanasia is not only an ineffective and inappropriate response to the pain of advanced disease; it also fails to understand the psychological vulnerabilities and fears the dying have and misinterprets their problems of clinical depression, grief, and brain dysfunction. Those who have not yet encountered death in their own family are often shocked to learn that most patients facing incurable illness remain hopeful, positive, active, and fully engaged in life despite their experience of grief and sadness. However, periods of intense clinical depression can occur when one is terminally ill and often lead to suicidal thinking. Assessment, then, becomes difficult since this condition must be differentiated from the normal patterns of grief associated with life-threatening illness.(25) Experienced palliative-care clinicians can usually recognize depression, which is described as feeling trapped in a corner, caught in a deep and total hopelessness and worthlessness that will never change. The -words and emotions and behaviours are those of a suicidal patient, not those of a grieving patient, even one who is waiting and sometimes wishing to die. Yet, many psychiatrists, if they are not familiar with terminal care, find this diagnosis very problematic. Mental-health workers are correctly concerned that the euthanasia debate fails to appreciate the subtleties of psychological diagnosis and fear that the sanctioning of assisted suicide will undermine decades of suicide-prevention activities. Recent research on the terminally ill indicates that a strong wish to die is rare and that it is highly correlated with depression.(26) This study also supports the clinical impression that such wishes to die are highly unstable and shift when symptom relief and psychosocial support are provided.

Euthanasia advocates also fail to address the fact that 85 percent of patients in advanced stages of disease have a measurable delirium.(27) The capacity to make decisions, especially one as serious as suicide, is severely impaired.(28) Deterioration in brain function and mental competence can often be dramatic and fluctuations frequent. In this setting, the use of a rigid legal framework of consent for euthanasia would be totally unworkable and the potential for abuse huge. As has been demonstrated in the Netherlands, the realities of the bedside would result in any system of legalized suicide being rapidly expanded to include involuntary euthanasia for incompetent patients.

Even when there is no pain, clinical depression, or delirium, we still encounter patients who express, either transiently or repeatedly, a wish to die; Is this not, then, the small group for whom euthanasia legislation needs to be designed? But here, too, euthanasia advocates fail to appreciate the richness and depth of the psychology of dying. Yes, the cries "Let me die," "Help me die," or "I wish I would die," are real and deep, but they can be interpreted only in the context of lamentation.(29) Bedside doctors and nurses frequently care for patients who yearn to discuss their highly ambivalent feelings about death. These patients need a place of safety in which to pour out their total pain. For us to interpret such a cry as a request for a lethal overdose is to miss the mark completely. Lamentation is a call for support and relief, a search for meaning, and an invitation for relationship. It is a cry of life.

CONCLUSION

Beneath all pain lies fear - fear within the patient, family, professionals, and community. The fear of pain itself and of death are central, yet one also can recognize the fears of:

  • abandonment
  • losing control of decision-making
  • overtreatment or artificial prolongation of suffering
  • incontinence
  • going crazy
  • dying in distress from bleeding, suffocation, etc.
  • becoming a burden to family
Relief can only be achieved by attacking what is a viper nest of terror. Advocates for euthanasia in Canada are, with rare exceptions, healthy persons who are afraid of death and pain and losing control. Euthanasia is promoted as the solution to fear, promising to end our fears of suffering and losing autonomy by offering, instead, control over the method and timing of death. This is a false promise. Euthanasia and assisted suicide have arisen as a direct consequence of unresolved fear and denial; sanctioning it would lead to a spiral of mounting fear, both in dying patients and in the worried well of the community. (30)

Euthanasia legislation, far from diminishing suffering, would enhance the pain of dying by

  • increasing mistrust between patient and professional care givers
  • increasing fear of the drugs of symptom control
  • diverting attention and resources away from palliative care.
The relief of pain requires more than sophisticated pharmacology. Both assessment and therapy are built on a covenant of trust between patient and care giver. At national conferences in recent months, frontline palliative-care professionals have said that the fear generated by the media debate on euthanasia is already having an impact on the care of patients and families.(31) Increasingly patients are distrustful of palliative care, concerned that their death will be hastened in some way. There also appears to be a growing fear of narcotics and other symptom-relieving drugs, reminiscent of 20 years ago when oral morphine was first introduced into Canada. Fears of overdosage and sedation lead patients to refuse relief and endure unnecessary pain. Of equal importance, at a societal level, the burden of suffering is increasing because public attention and government funding are being diverted away from palliative care. While the submitted briefs and discussions of the Senate Committee on Euthanasia and Assisted Suicide have been full of rhetoric in support of palliative care, this appears to be largely politically correct lip service.(32) There has been no significant increase in the infrastructure for palliative care within the provincial health systems since the debate began, and several examples of decreasing support in many provinces.(33)

The pain of advanced disease presents us with a tremendous challenge. Canada has the skills and resources to meet this challenge as long as we maintain our focus and our courage. We must not be diverted by the mirage of euthanasia, by this seductive quick-fix approach to suffering and death. Euthanasia, in fact, would open a floodgate of fear and pain. It would rob us of scarce resources and block the development of the effective community responses to pain that we so urgently.


Last edited: 1 March 1998 by mmdr