An Illusion of Autonomy:
Questioning Physician-Assisted Suicide and Euthanasia
The Special Senate Committee on Euthanasia and Assisted Suicide
Winnipeg, Manitoba * 30 September 1994
University of Alberta Developmental Disabilities Centre
SUMMARY: This background paper examines the potential advantages and disadvantages of assisted suicide and euthanasia for Canadians with physical and mental disabilities. It does not assume that suicide, assisted suicide, or euthanasia are inherently right or wrong ; instead, it considers the complexities and potential effects for people with disabilities. While individual autonomy, the right to privacy, and the right to control one's own body have been presented as arguments in favor of physician-assisted suicide and euthanasia, this paper presents counter-arguments suggesting that proposed assisted-suicide provisions would put many people's lives in jeopardy.
The debate over assisted suicide and euthanasia is not new. Euthanasia was legalized in Germany more than 50 years ago and decriminalized in Holland about 20 years ago. In Canada, it has been the subject of repeated discussions, including Bills introduced to Parliament, Civil and Criminal Court cases, Law Reform Commission Reports, and Medical Association resolutions. Each of these discussions has concluded that the dangers of permitting the willful destruction of human life by another human being far outweighs any benefits gained by legalization. This background paper agrees with this conclusion and supports Canada's current prohibition against assisting or counselling suicide. It argues that the current prohibition represents an important protection of the right to life for all Canadians. Removing it selectively in regard to the lives of people with illness or disability would provide less protection for these Canadians, and as such, it would represent a fundamental violation of the principle of equal protection for all citizens.
Regardless of illness or disability status, choosing to live or die is a personal psychosocial decision. When others become involved in such decision-making process, the decisions become political, social, and legal decisions, not medical decisions. The involvement of health care professionals in such decisions does not constitute a reasonable due-process protection for people's lives. If assisted-suicide is made legal for some citizens, it must be made legal for all citizens. Legal safeguards, including individual judicial proceedings, should be put in place to ensure that decisions are made autonomously by fully competent and informed individuals who are free from coercion or undue influence. Unless and until such safeguards are put in place for every Canadian, assisted suicide or euthanasia should not be permitted for any Canadian.
This paper suggests that Canadians with disabilities will be most affected by assisted-suicide or euthanasia programs; therefore, people with disabilities are urged to carefully study all proposals and to voice any concerns about proposed legislation. Until and unless concerns are adequately addressed, people with disabilities are urged to work against the passage of any assisted-suicide or euthanasia bill.
SENATE BRIEF TABLE OF CONTENTS
The purpose of this brief is to raise concerns about amending Canadian law to permit euthanasia or assisted suicide. To do so, it discusses the abuses that have typically surrounded euthanasia and assisted suicide and the complexities of developing a system that allows people as much autonomy as possible without putting the lives of many more vulnerable people in jeopardy. It suggests that the number of people who would competently request assistance for rational reasons and actually require assistance for suicide is extremely small. The number of people who might be put in jeopardy is much larger. Those individuals in greatest jeopardy will include infants and children with a wide range of disabilities (Schaffer & Sobsey, 1990), children and adults with developmental disabilities, children and adults with affective disorders and other mental illnesses, and senior citizens.
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IN THE NAME OF HUMANITY
It was a story that touched the feelings of the entire nation.
A woman was losing control over her own body
as she lost ground to a degenerative neurological condition.
Her husband an another close male friend looked on as she begged for help
to release her from her suffering, but the law would not allow them to give her mercy.
Finally, one brave man defied the law
and permitted her to die with dignity
This is the story that a challenged the nation to change its law in the name of humanity.
This story may seem familiar to Canadians, but it is not the story of Sue Rodriguez, and the country is not Canada. It is the central plot of Ich Klage An (I Accuse), a major motion picture written by a T4 Nazi death-doctor and produced by the Nazi propagandists to legitimize their euthanasia program. The film, directed by Wolfgang Libeniener, won international awards for excellence and attracted an audience of more than 15,000,000, a major success of its day. At the end of the film, Thomas, the husband who assisted his wife Hannah to commit suicide, stands before the court accused of homicide and says,
No! Now I accuse! I accuse the law which hinders doctors and judges in their task of helping people. I confess... I have delivered my wife from her sufferings, following her wishes. My life and the lives of all people who will suffer the same fate as my wife, depends on your verdict. Now, pass your verdict.
The film ends at that point, inviting the German people to make their choice between a cruel and archaic law or a humane step toward a better world. It challenged the German people to accept assisted suicide and mercy killing, and as history shows, they took the "humane" step. In doing so, they opened the door to the ruthless murder of a quarter of a million people with mental and physical disabilities. Ultimately, the ideas, people, and apparatus developed to run this assisted-suicide program served as the basis for the later mass killings of Jews, homosexuals, communists, and many other minorities. When the war was over, the mass graves were opened. The German people said that what happened was not what they expected and not what they had approved. It was not death with dignity or rational suicide; it was mass murder. Many German people said that they did not know the truth or that they were poorly informed, and some have suggested that they did not want to know the truth.
Today, Canada is faced with a similar decision about opening the same door with the same good intentions. We tell ourselves that we are different, that we are too civilized to allow the abuses, too sophisticated to be betrayed by something that appears to be rational and compassionate. We tell ourselves that we will open the door just enough to let in the rare exceptions, but never wide enough for malicious or unintended killings. We tell ourselves that we can keep the issues simple and never be drawn down the slippery slope into the misapplication of our humanitarian goals.
We look to the current Dutch experience with assisted suicide and euthanasia for reassurance. We try to focus on what is most positive (the tiny number of true assisted suicides) and ignore the much larger numbers of people killed without explicit request or consent. We deny the fact that since the door to euthanasia cracked open in Holland a decade ago, it has been pried open wider and wider in order to legitimize more and more deaths. We hope the studies that claim that most Dutch physicians still practice deception in recording the details of their euthanasia hide only minor procedural noncompliance. We ignore studies that demonstrate that senior citizens in Holland report that they fear entering nursing homes because they believe that they will be euthanized (Protestant Christian Elderly League, 1993).
These problems must not be glossed over or ignored. For those who oppose euthanasia, these problems may be reason enough to keep the door tightly shut; and those who support it must confront these problems. Until and unless they are adequately addressed, no law should be considered to permit assisted suicide or any other form of euthanasia. If we ignore these problems, we do so at our own peril. Whatever follows will be our responsibility. We cannot dispose of it by saying we did not know.
Hegel, in his Philosophy of History, suggests that "what experience and history teach is this, that people and governments have never learned anything from history." Canadians have the opportunity to show that Hegel was wrong. To do so, we must consider what euthanasia and assisted suicide meant in Germany five decades ago and what they have come to mean in Holland today. This brief considers Canada's current debate in light of these events and what we currently know about suicide, illness, and disability.
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THREE VIEWS OF ASSISTED SUICIDE AND EUTHANASIA
Basically, there are three views to consider when discussing assisted suicide and euthanasia: an optimistic view, a pessimistic view, and a realistic view:
An optimistic view Proponents of assisted suicide and euthansia suggest that people whose disabilities or illnesses become so severe that life holds no promise of pleasure should be able to end their lives as painlessly and with as much dignity as possible. They point out that suicide is already legal in Canada and that some people may be unable to phyiscially carry out their autonomous choice because of their disability. Therefore, they consider helping people to die after they have made a free and informed choice as a reasonable accommodation for people with disabilities. They feel that this would give people with disabilities greater control over their bodies and their lives. They suggest that empoying euthanasia and assisted suicide might have secondary benefits for people who choose to remain alive because resources that are wasted keeping people alive against their wills could be redeployed to people who could benefit from these resources. They feel that those who worry about the dangers of euthanasia are paranoid or are religious or philosophical zealots since no one would die without making a free choice.
A pessimistic view Opponents of assisted suicide and euthanasia feel that those who consider these practices to be beneficial are naive. They consider euthanasia and assisted suicide to be nothing more than ways to eliminate people with disabilities, and they suggest that few people will make free and informed choices to die; rather, many people with disabilities will have those choices made for them. They point to the horrors of the Nazi euthanasia program, which led to the slaughter of 250,000 people with disabilities, and to the apparent abuses under the current Dutch system as proof that any law that permits people with disabilities to be killed legally will result, at least to some degree, in another holocaust. They suggest that people with illnesses or disabilities do not need assistance to commit suicide. In fact, the vast majority are quite capable of using the same methods as other Canadians if they choose to die. Even those who are severely debilititated but competent can use the right to refuse treatment or food as a way to kill themselves. They suggest that people with disabilities or illnesses might be coerced into suicide for any number of reasons, for example, to cut health care costs, if assisted suicide and euthanasia were legalized.
A realistic view Assisted suicide and euthanasia may make some people's deaths less painful or unpleasant, but these practices also open the door to abuses. Simple cases, in which there is a clear benefit, are the exception rather than the rule. Suicide is not easily divided into rational and irrational suicides for people with disabilities or for anyone else. While it is unlikely that the horrendous events of the German euthanasia program will be repeated, the current Canadian proposals share too many features with the German program to ignore the tremendous potential for abuse. Information from the Dutch program provides clear examples of abuse, and it illuminates vast gray areas of uncertainty. If a law is brought forward with adequate safeguards to prevent abuse and with a description of some clear benefits, it should be considered. If a law cannot be drafted that substantially satisfies the concerns about abuse, it is far better for society to accept the limitations of the current situation than to play with the fundamental protection of an individual's life.
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Last year, the Supreme Court of Canada narrowly upheld Canada's prohibition against counselling or assisting suicide and denied Sue Rodriguez the right to die legally with the aid of a physician. Sue Rodriguez's bravery and willingness to stand up for her beliefs while her health and abilities deteriorated as a result of Amyotrophic Lateral Sclerosis (ALS) have been rightly praised as examples of the strength of the human spirit and determination. The current debate on euthanasia and assisted suicide is, to a significant degree, a legacy of her advocacy (Wood, 1994).
Nevertheless, if permitted in Canada, the reality of euthanasia or physician-assisted suicide will not be the reality envisioned by Sue Rodriguez. To understand the reality of euthanasia and assisted suicide, it is necessary to examine similar attempts in other countries and other times and to consider examples from our own Canadian experience.
Most of this brief focuses on physician-assisted suicide rather than other forms of euthanasia for the following reasons: Current Canadian discussions focus primarily on physician-assisted suicide as more acceptable than other forms of euthanasia, and physician-assisted suicide is the target of current legislative efforts. As suggested in this brief, assisted suicide also needs careful consideration because what may appear to be simple and for the benefit of the patient is, in fact, complex and rarely for the benefit the patient.
The notion of helping people with terminal or incurable illnesses or with severe disabilities achieve an easy and painless death appears to be humane and uncomplicated. An individual is informed about his or her condition and the prospects for the future. After carefully considering the information, the individual makes an informed choice to avoid prolonged suffering and to end his or her life with personal dignity and a sense of control. If the individual makes a choice to die but is unable to carry out that choice without assistance, a physician dispenses or administers drugs that cause a peaceful and painless death. According to this view, because other Canadians have a right to commit suicide under current Canadian law, people with illnesses and disabilities should have the same right. If some people are unable to kill themselves because of their impaired physical abilities, allowing others to help them would be a reasonable accommodation. Because people with illnesses or disabilities have rational and valid reasons for choosing to die, they should be given assistance to commit suicide and not prevented from exercising a right enjoyed by Canadians without disabilities or illnesses.
To understand why these notions about assisted suicide are simplistic and misguided, it is necessary to explore 12 underlying assumptions:  People with illnesses and disabilities would make these decisions themselves,  people with illnesses and disabilities would be well-informed about their conditions and their future prospects,  people with illnesses and disabilities would be free from undue influence and coercion,  people with illnesses and disabilities are often able to make decisions about suicide but physically unable to carry out those decisions,  access by people with illnesses and disabilities to physician-assisted suicide would be equivalent to the right of other Canadians to commit suicide by other means,  Ssafeguards through the involvement of the health care professionals would be equivalent to legal due process safeguards for the protection of human life,  there is no reason to suspect that such practices would be based on or lead to maltreatment or devaluation of people with illnesses or disabilities,  there would be little potential for the abuse of the such assisted-suicide provisions and there would be no conflict of interest between health-care and death-making roles of physicians or other health-care professionals,  it would be easy to differentiate murders of people with illnesses and disabilities from assisted-suicides so that prosecutions could proceed if and when appropriate,  the limits of such assisted-suicide provisions would be adequately clear to prevent gradual broadening to include other even less acceptable practices,  illness or disability is a more valid reason for choosing suicide than any other reason, and  specific legislation regarding euthanasia and assisted suicide would reduce ambiguity and thereby reduce clandestine and inappropriate applications of euthanasia and assisted suicide.
Unfortunately, according to history, experience, and research, none of these assumptions are correct. Instead, these assumptions suggest 12 fundamental problems with physician-assisted suicide.
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PROBLEMS WITH ASSISTED SUICIDE
1. While advocates of assisted suicide suggest that this would provide people with autonomy and personal control, in many cases, people with illnesses and disabilities would have these decisions made for them and imposed on them. As a result, while some people are being denied access to death now, many more would be denied access to life under physician-assisted suicide. Statistics from Holland (e.g., olde Scheper & Duursma, 1994), where physician-assisted suicide has been allowed for a number of years, suggest that more people are "assisted to die" without any explicit request (N = 1000) than those who request assisted suicide (N = 400).
2. In many cases, people with illnesses and disabilities would be poorly informed about their conditions and their future prospects. Therefore, the decision to engage in assisted suicide could not be made rationally. Currently, many patients with serious illnesses are poorly informed about their conditions and prognoses. Without this information, they cannot be expected to make informed decisions about suicide. Often, people are given unclear or misleading information about their prognosis or how long they are expected to live because health care providers simply do not know or are wrong in their expectations. As discussed later in this brief, studies that examined the accuracy of medical predictions suggest that physicians rarely know who will die or when they will die. The only time that physicians can predict when death will occur with any degree of certainty is when it is so close that euthanasia would make little difference.
3. People with illnesses and disabilities would be influenced and coerced by many others and by circumstances. Research shows that the information given to patients and their families and the manner in which it is presented often manipulates the decisions about vital matters. In some cases (e.g., the MacAfee case discussed in this brief), people chose suicide because there is a lack of appropriate services or inadequate accommodations and not because of their physical conditions.
4. People with illnesses and disabilities are able to make decisions about suicide but physically unable to carry out those decisions. In fact, very few people have disabilities or illnesses that make it impossible for them to commit unassisted suicide. The great majority of people with illnesses or disabilities are perfectly capable of committing suicide by the same means employed by other individuals. Many of those whose physical condition would make it impossible for them to commit suicide without help are also unable to make the decision for themselves (e.g., in a coma). Some people with advance neurological disease or high level spinal cord injuries may be physically incapable of holding a gun or drowning themselves, but even these individuals have a right to refuse food or treatment under current law. While such a method of suicide may be less preferred, it is nonetheless effective. There may be cases where no method is available to a fully competent person, but if such cases exist, they are extremely rare.
5. Access by people with illnesses and disabilities to physician-assisted suicide would be vastly different to the right of other Canadians to commit suicide by other means. While suicide is legal in Canada, the government deliberately controls many dangerous drugs and devices that might be employed in suicide in an effort to discourage it. Discomfort with the means that are available acts as an important deterrent to suicide for all Canadians. Providing deadly drugs, medical expertise, and personal assistance to one segment of society while denying it to another segment of society goes beyond the intention of equal access and provides differential encouragement for suicide.
6. Safeguards through the involvement of the health care professionals would not be equivalent to legal due process safeguards. While most physicians and other health-care professionals are ethical and humane individuals, there is no reason to believe that their inclination, training, or experience prepares them to exercise life and death power more wisely than any other group of individuals. The involvement of vast numbers of physicians in selecting victims for gas chambers during World War II provides a grim reminder that being a physician is in itself no guarantee that an individual will act morally to protect life. The fact (discussed later in this brief) that large numbers of Dutch physicians continue to falsify death certificates, defy procedural safeguards, and go beyond the limits of legalized euthanasia, engaging in a wider and wider circle of death-making practices, suggests that better safeguards would be required for any Canadian legislation legalizing physician-assisted suicide.
7. There is reason to suspect that such practices would be based on devalued views of people with disabilities and serious illness. Studies of violence against people with disabilities indicate that they are commonly the targets of violence, that crimes against them are perceived as less serious than similar crimes against other citizens, and that negative and ambivalent attitudes about people with disabilities that suggest that their lives have less value are at the root of these problems (Sobsey, 1994). The belief that illness and disability are valid and rational reasons for suicide and that other social and interpersonal problems are not rational reasons reflects society's fundamentally biased attitudes toward disability. If our society chooses to legitimize this myth through a categorical discrimination in suicide law (i.e., permitting assistance only for people with illnesses and disabilities), it will reinforce and strengthen these biases.
8. There would be great potential for the abuse of assisted-suicide provisions, and often, there would be an inherent conflict of interest between the health-care and death-making roles of physicians and other health-care professionals. The interests of health-care providers, families, and patients are often in conflict. For example, cost control has often entered into discussions on euthanasia (e.g., Emanuel & Emanuel, 1994). Hospitals and other institutions may be predisposed to encourage physicians to gain the consent of some patients as cost-control measures. If patients' deaths are to hastened to save money, this is triage and not mercy killing or assisted suicide.
9. It would be difficult to differentiate murders of people with illnesses and disabilities from assisted suicides. The difference between homicide and assisted suicide depends on intentions and other subtle factors that are difficult to prove absolutely. When this is combined with the application of assisted suicide only to people with illness or disability, it means that people with illness or disability in Canada would not have equal protection of their lives, which is a fundamental breach of the Charter of Rights and Freedoms.
10. The limits of such assisted-suicide provisions could not be constructed clearly enough to prevent gradual broadening to include other even less acceptable practices. If assisted suicide was limited to cases where there were no signs of clinical depression, there was no potential conflict of interest, and a fully competent person made a decision for his- or herself, it would rule out more than 99% of the actual cases requiring assisted suicide. If it is permitted in such cases, the reality of the practice will be a slippery-slope on which society approves of rare instances of "assisted-suicide" but gets nonvolunatry euthanasia and outright homicide.
11. Specific legislation defining appropriate and inappropriate conditions for euthanasia will not end ambiguous or inappropriate uses of euthanasia or assisted suicide. Current legal ([[section]] 241(b) Criminal Code) and ethical (Hippocratic Oath clearly prohibits any form of counseling or assisting suicide) prohibitions are quite clear, but even so, they have not eliminated difficult decisions. Creating legal and ethical exceptions will only increase the ambiguity and provide a greater rationale for other illegal and unethical exceptions.
12. Illness or disability is no more rational a reason for choosing suicide than any other reason. Our belief that we should prevent most suicides while encouraging and assisting suicide for some individuals represents our own biased views of illness and disability. For example, an individual convicted of the murder of a child may face life in prison and social disgrace. Such an individual faces a poor quality of life and may express the wish to commit suicide. Yet society does not endorse suicide for convicted criminals and takes an active role in preventing suicides in prison. Suicidal prisoners are often deprived of belts and even shoelaces to prevent hanging. Why should we label the suicide of such a prisoner as irrational and try to prevent it while we label the suicide of an individual with illness or disability as rational and offer assistance to carry it out?
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While this paper is primarily concerned with assisted suicide, a particular form of euthanasia, it seems necessary to include some general comments about euthanasia. The primary meaning of euthanasia is a peaceful death with minimal suffering, regardless of whether death is natural or deliberate. Only more recently, according to Oxford English Dictionary, the word has gained another meaning, which is used in this brief: that is, deliberately causing death to end suffering. This meaning has been further extended in the twentieth century to refer to the deliberate killing of people with chronic illnesses or disabilities with or without their consent and regardless of whether they are suffering.
While the intention of minimizing or ending suffering necessarily plays a central role in all of these definitions, intentions are rarely singular or apparent. For example, Quill (1993) in describing his own motivations for prescribing lethal medications to a terminally ill patient identifies at least seven separate intentions. The Nazi euthanasia program in the 1930s and 1940s provides an extreme example of the problem with ambiguity of intention. Although it was described as euthanasia and an attempt to end suffering, the eugenic and economic intentions were also apparent. While many discussions centered on the humane intentions of easing suffering, the increasing need for hospital beds in war time and the shortage of physicians aggravated when Jews were no longer allowed to practice medicine were powerful motivators for the practice of euthanasia (Sobsey, 1994). Nevertheless, with specific orders from Hitler, the program claimed to provide "final medical assistance" to those judged "incurable" by physicians authorized to end their suffering (Gallagher,1990).
These various meanings of euthanasia point out that any discussion of euthanasia must define the limits of the term. As used here, the term euthanasia refers to the deliberate killing of a human being (or other living creature where so specified), whether effected by action or inaction, with the primary intent of minimizing and ending that individual's suffering. Euthanasia can be further divided into three categories: voluntary euthanasia, involuntary euthanasia, and nonvoluntary euthanasia.
Voluntary euthanasia takes place when an individual personally chooses to end his or her own life in order to end suffering with or without the assistance from others and dies as result of this voluntary choice. As such, it is essentially the same as suicide and will be discussed under that heading below.
Involuntary euthanasia occurs when an individual is killed against his or her will but with the primary intent of ending his or her suffering. This brief strongly opposes all forms of involuntary euthanasia. Regardless of the real or professed intentions of those responsible for killing a person against his or her will, such killings clearly constitute murder and should be prosecuted as murder.
Nonvoluntary euthanasia occurs when an individual is killed with the intent of ending his or her suffering, when that individual neither gives informed consent nor specifically indicates any objection. This frequently occurs when an individual's ability to understand or discuss his or her condition and alternatives is severely impaired, such as when an individual is in a coma. This includes situations where substituted consents are given by guardians, family members, or other substitute decision makers.
Triage is a system for classifying patients into three groups: (1) Those who require little or no treatment because they have mild medical conditions that should improve with or without treatment, (2) those who are unlikely to survive with or without treatment, and (3) those for whom treatment is likely to substantially improve outcome. Under a triage system, patients who are least likely to benefit because of poor prospects for survival may receive the lowest priority for treatment, receive no treatment, or even, in a radical approach, be killed. Triage should not be confused with euthanasia; it allows or causes people to die for the benefit of others or even as a cost-saving measure, not for the benefit of the individual who dies. If triage is to be implemented, it should be specifically discussed and debated as a practice implemented for the benefit of someone other than the person who dies. It should never be permitted to be introduced under the pretense of euthanasia.
This brief is against all forms of involuntary euthanasia and nonvolunatry euthanasia. These practices constitute murder under the Criminal Code of Canada, and they should remain illegal. Recent efforts to legalize euthanasia suggest (1) that people with disabilities and incurable illness have such poor quality of life that killing them is doing them a favor, (2) that because new medical technology is keeping so many people alive society is faced with a new and increasing burden, and (3) that families of people with disabilities should be relieved from their burden of stress. Each of these arguments are misguided myths or deliberate propaganda (Sobsey, 1993).
The belief that people with disabilities have an unbearable quality of life is not supported by research. In one powerful study, Bach and Campagnolo (1992) found that respiratory dependent polio survivors rated their own quality of life just as high as their caregivers without disabilities, but the caregivers felt that these people had a lower quality of life. This clearly demonstrated that health-care professionals' ratings of the quality of life of people with disabilities is inaccurate.
In addition to the health profession's inaccurate view of quality of life, it is believed that caring for people with disabilities strains society's economic resources. Even if it were true that people with disabilities were placing a strain on our economic resources, this would not be an appropriate justification for euthanasia. The very existence of such an argument betrays the fact that those who make it are not primarily concerned about the best interest of the individual who might qualify for euthanasia. Nevertheless, the belief that new lifesaving medical technology is creating an ever increasing number of people with disabilities, which in turn places a burden on society, is also a myth (Orelove & Sobsey, 1994). While it is true that many people survive who would have died without modern medical treatment, and many of those do have significant disabilities, research demonstrates that medical science is reducing disability at an even faster rate. Vaccines have drastically reduced the number of people disabled by polio, rubella, pertusis, and other diseases. The lifesaving techniques that keep premature infants alive also reduce the number who are disabled. More infants live, but fewer survive with disabilities. The widespread use of prenatal testing and genetic counselling has also reduced the number of people born with disabilities. The only segment of the population with disabilities that appears to be expanding is the elderly, and even this is based on the outdated and inaccurate notion that everyone past a given age is disabled. Today, in Canada, we have many more people living into their 60s and 70s than ever before, but today, in Canada, people who are in their 60s and 70s are also healthier than their predecessors.
While it is not true that caring for people with disabilities strains society's economic resources, it is true that some families experience stress due to the illness or disability of a family member. However, the frequency and extent of the stress experienced by families is vastly exaggerated (Sobsey, 1990; Glidden, 1993) and based on negative stereotypes of people with disabilities. Furthermore, killing the family member associated with the source of stress is unlikely to be a successful strategy for reducing family stress. Family stress is not and should never be a rationale for killing family members without disabilities, and neither should the presence of a disability in a family member.
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- Canada has identified suicide problem among its youth, and we have responded "how can we prevent it?" Canada has identified a suicide problem among Aboriginal Peoples,and we have responded "how can we prevent it?" Canada has identified a suicide problem among people with disabilities, and we have responded "how can we assist them to kill themselves?"
Assisted suicide refers to an individual taking his or her own life with the aid of another individual. Physician-assisted suicide refers to an individual taking his or her own life with the aid of a physician. Rational suicide refers to suicide that results from a voluntary and competent decision by an individual that future prospects do not justify continued living. Irrational suicide refers to suicide that results from depression, anger, rage, fear, or an emotional disorder.
Usually, proposals for assisted suicide suggest certain safeguards to minimize misapplication and to help differentiate between assisted suicide and murder. Quill, Cassel, and Meier (1992) present these typical safeguards:
- The patient must have an incurable disease or disability that produces mental or physical suffering, but need not be terminal.
- Illness or disability should be in advanced stages before euthanasia can be provided.
- The physician must determine that the suffering does not result from inadequate treatment and should make all reasonable attempts to control pain.
- The patient must ask to die and demonstrate certainty of decision.
- The physician must be certain that depression or other conditions are not distorting the patient's judgement.
- The physician must exhaust all reasonable treatment alternatives.
- The physician who normally treats the patient would assist with the suicide.
- An independent physician should be consulted and agree that assisted suicide is appropriate.
- The patient and the two physicians involved should sign a witnessed consent form.
Most discussions of assisted suicide consider assistance for rational suicide but argue against irrational suicide. Nevertheless, the arbitrary distinction between rational suicide and irrational suicide fails to recognize that all suicide decisions include both cognitive (rational) components and affective (irrational) components. Therefore, in reality, no suicide can be described as wholly rational or irrational; each is somewhere on a continuum between the two.
This brief is opposed to most forms of assisted suicide. It suggests that legalization of assisted suicide would allow a small number of people who have made rational choices to kill themselves with less pain or distress, but it points out that this practice would legitimize a much larger number of wrongful deaths. It also argues that rather than reducing the difficult legal and ethical questions surrounding end-of-life decisions, legalization of assisted suicide would open much broader and more difficult questions. Since current discussions of assisted suicide and euthanasia fail to specify the details of proposed legislation, it is necessary to consider a wide range of possibilities. Table 1 illustrates some of the assumptions that underlie various plans for euthanasia and the realities that undermine those assumptions. Each of these points is discussed in this brief, and they are grouped here primarily as a summary of information. In general, while allowing for a wide range of possibilities, the analysis, predictions, and recommendations in this brief are based on a program of assisted suicide and euthanasia similar to the one currently in place in Holland.
Who would make end of life decisions? Would they have all the necessary information? Would they be free from coercion?
Research suggests that many end-of-life decisions as well as many other vital medical decisions are made by physicians and not their patients. The "illusion of patient choice" has been discussed frequently in the professional medical literature. Orenticher (1992), in reviewing several studies, found that many physicians were uninformed about their patients choices, exerted influence over patients choices to make them agree with their own preferences, and simply ignored their patients' choices even when they knew them, making their own decisions about treatment and ending treatment according to their own attitudes and preferences. Even when patients and their families are the nominal decision-makers, they often are manipulated by the information given to them and the manner in which it is presented. For example, studies have shown that physicians discussing heart surgery with the parents of patients generally start out with a predisposition to talk them into or out of the surgery. The same studies indicate that these parents typically make choices consistent with the physician's biases (Crane, 1975; Silverman, 1987). In simple language, physicians talk parents of children without disabilities into consenting to lifesaving surgery and talk parents of children with disabilities out of consenting to lifesaving surgery. Such medical discrimination has been a major problem for people with disabilities. Until there is assurance that such medical discrimination no longer exists, giving physicians greater power over the lives and deaths of their patients is a dangerous practice.
In research conducted at the University of Alberta, we reviewed 36 medical records of healthy people with severe developmental disabilities for whom "Do Not Resuscitate (DNR)" orders had been considered. None of these patients had any acute severe health problems. Of these 36, none of them had a request for the DNR order initiated by the family. The request was initiated by the attending physician in 100% of the cases. In our opinion, the DNR requests were inappropriate (there appears to be no legal basis for DNR orders for these patients) and arbitrary (the same request was sent to all of the families at the same time, regardless of the patient's current health status). While only two families (6.7%) of 30 families who responded refused consent to the implementation of DNR, all these patients' charts were labelled "Do Not Resuscitate." Thus, it was the physician and not the patient or the family who played the dominant role in this vital decision.
While patients have a clear right to be fully informed about their health status, they are often poorly informed, especially in the case of life-threatening illness. In many cases, families are informed by physicians and the physicians and families make the decision about what and when to tell the patient. Decisions to withhold information are often defended on the basis of protecting the patient. This situation creates an obvious problem: That is, it would be impossible for patients to make rational decisions about suicide based on medical conditions about which they are not adequately informed. In a recent poll of Canadians, it was found that 33% still believe that physicians should withhold information about the conditions of their patients, even if that information is essential to making vital decisions (Singer, Choudhry, & Armstrong, 1993). The less obvious but perhaps more catastrophic problem is that the decisions by families and physicians to tell patients will, in many cases, be combined with the decision by families and physicians to ask the person to consent to assisted suicide.
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Table 1. Realities of Euthanasia
||Reality of euthanasia
||*If decisions were truly autonomous, illness or disability would not be a precondition.
*Decision rests mostly in the hands of physicians and lawyers.
||*Many people with serious illnesses are never fully informed about their condition.
*Deception is commonly practiced and recommended in some training programs.
|Free from influence
||*Studies show physicians give the information that will elicit the decision they want.
|Free from coercion
||*Economic factors and lack of humane programs often push people to suicide.
||*Suicide is not more or less rational for people with illness and disability than it is for people without disabilities.
*Depression and other mental disorders are commonly present in suicide.
*People with medical problems commonly experience depression.
*The desire for suicide in patients with terminal illness or chronic disabilities is rare in the absence of clinical depression.
|Competent decision maker
||*Most people euthanized in Holland are not assisted suicides, and many never make a direct request for euthanasia.
|No other treatment available
||*In many cases where euthanasia is applied in Holland, physicians admit other reasonable treatments were available but not tried.
||*Very few people who are competent to request suicide actually require assistance to complete the act.
*Assistance generally means making more preferred forms of suicide available.
*Most people with illnesses or disabilities who contemplate suicide do so at early stages when they are as capable as anyone else of committing suicide.
|Last stages of disease
||*Most people who consider suicide because of a medical condition do so in the early stages of the disease and rarely consider it in the late stages.
|Equal access and accommodation
||*Other citizens are discouraged from suicide, not assisted to kill themselves.
*Easy methods of suicide are often prohibited in order to prevent suicide. If suicide is to be assisted, it should be assisted for all, not prevented for some while assisted for others.
Such discussions about who would actually make the decisions regarding physician-assisted suicide remain somewhat abstract without real data, which are impossible to collect until and unless physician-assisted suicide is put into practice. However, data from Holland, where physician-assisted suicide is permitted, provide a useful guide. As shown in Figure 1, Dutch government estimates suggest only 400 people (14.8%) actually consented to assisted suicide, while 1300 (48.1%) received euthanasia after making some request or advanced directive, and 1000 (37.0%) more received euthanasia without any request (van Delden, Pijnenborg, & van der Maas, 1993). Since the current Dutch guidelines are similar to those suggested for Canadian law, and since Canada's population is about one and a times that of Holland, we could expect these numbers to be increased by about 150% in Canada.
FIGURE 1. Assisted Suicide cases in Holland. These numbers could be expected to translate to about 600 truly voluntary assisted suicides in Canada, 1950 voluntary euthanasias, 1500 nonvoluntary euthanasias, and 12,900 cases of requests for assisted suicide that will be denied each year in Canada.
Another 8600 people requested euthanasia, but their requests were vetoed by their doctors. These figures do not include approximately 5800 people who had died because treatment was withheld or about 5000 more whose deaths were hastened by medication given primarily to control pain. Thus, actual assisted suicides represented a very small proportion of all these deaths. In fact, the 1000 nonvoluntary euthanasia cases outnumbered actual assisted suicides by 2.5 to 1.
In fact, this estimate almost certainly overestimates the percentage of cases in which patients autonomously chose assisted suicide for two reasons. First, 75% of the Dutch cases of euthanasia are not reported as such (despite the legal requirement to do so), and "26% of Dutch physicians went so far as to say that they would not, under any circumstances, be willing to report a case of euthanasia despite the legal requirement" (Ciesielski-Carlucci & Kimsma, 1994, p. 152). Unless we assume that physicians are as likely to report illegal cases as legal cases, we would have to assume more illegal (involuntary) cases go unreported. Second, even for the 400 who volunteered for assisted suicide, this report gives no information about any coercive circumstances that may have influenced their decisions, how well-informed they were about their actual condition and prognosis, or how competent they were to make their decisions. If any of the volunteers were coerced or had incomplete or inaccurate information, this would further reduce the number of volunteers for assisted suicide. In view of our findings in regard to DNR orders and the work of Crane (1975) and Silverman (1987), which suggests that physicians are often the real decision makers, it seems extremely likely that many of the 400 volunteers were strongly influenced by others. In view of the information presented in this brief on the relationship between illness, depression, and suicide, on the lack of complete information commonly given to patients with serious illnesses, and on the undue influence of physicians in end-of-life decisions, it is likely that more than half of the 400 voluntary cases were not fully voluntary.
There is good reason to question whether all the Dutch volunteers were competent to make the decision about suicide. For example, this year, the Dutch Supreme Court ruled that mental illnesses, including chronic depression, constitute disabilities for which assisted suicide is appropriate. It is difficult to see how a person could be so severely mentally ill that he or she would be better off dead and yet be rational enough to make the decision to die, especially since 64% of all people who commit suicide suffer from a major uncomplicated affective disorder (typically depression), and an additional 13% suffer from major affective disorders complicated by alcoholism (Buda & Tsuang, 1990). Estimates of the number of people in the general population with major affective disorders range from 6.1% to 9.5% of the population, which would translate to about 1,600,000 Canadians (Buda & Tsuang, 1990).
Many cases involve substitute consent. In such cases, the decision for "voluntary assisted-suicide" is made by another person appointed as guardian or substitute decision maker. Such individuals are typically entrusted to make decisions for people who cannot make them for themselves. End-of life decisions are commonly made by such individuals. In a Wisconsin case, for example, it was ruled that a guardian could choose to let a comatose patent die even though the patient had never indicated a preference for this decision at any time in his life (In the matter of Guardianship of L. W., 1992). Thus, while the argument is made on behalf of those who are personally requesting assisted-suicide, most "assisted suicides" will in fact be nonvoluntary.
Are people with disabilities and chronic illness capable of making decisions about suicide but unable to commit suicide without help? Would physician-assisted suicide make suicide equally available to all Canadians, regardless of disability status?
It has been argued that people with disabilities might be capable of deciding to commit suicide, but physically unable to carry out the act. This provides the basis for a constitutional argument that people with disabilities should be provided assistance to commit suicide in order to have equal control over their lives. This argument requires careful consideration.
It is clear that some people are capable of making informed decisions about suicide but physically unable to act on this decision without assistance. The number of people in this category, however, is very small, and the exact number depends on the method of suicide. Figure 2 indicates common methods of suicide for the general population. Although drugs and gas are often considered easier methods of suicide, they are used in only 20% of cases. In a study of young, presumably healthy college students, poison and drugs accounted for 20% of suicide deaths, and gas accounted for another 14%; the other 66% of suicides used less preferred methods, including firearms (30%), hanging (17%), jumping (15%), and other means, such as drowning, slashing wrists, vehicle crashes, fire, or electrocution (4%).
Methods of suicide. Only about 10% of people committing suicide use poison or drugs, and this includes many methods that cause slow and painful deaths. Most people who commit suicide use less preferred methods such as guns and hanging.
Ironically, some of the methods that have been suggested for euthanasia may seem more acceptable because they are seen as medical and not because they actually produce less suffering. For example, potassium chloride injection, mentioned in Special Senate Committee on Euthanasia and Assisted Suicide Bulletin Number 3 as a substance requested for euthanasia, is among the agents considered "unacceptable and absolutely condemned for use" as an euthanasia agent (American Veterinary Medical Association, 1993, p. 239) with animals because it is inhumane and causes respiratory arrest before unconsciousness. Gunshot and electrocution are considered far less inhumane methods of euthanasia.
Most people who commit suicide do not have access to easy means or assistance. While suicide is legal in Canada, the government deliberately controls many dangerous drugs and devices that might be employed in suicide as a part of its suicide prevention program. Experts estimate that further restriction of access to guns, dangerous drugs, and high places would reduce youth suicide by about 18% (Rosenberg, Eddy, Wolpert, & Broumas, 1989). In fact, restricting access to the common means to commit suicide is an important component of suicide prevention programs (Lester & Leenaars, 1993). One study showed that suicide by firearms decreased significantly in Canada after Bill C-51 restricted firearms, and suicides by other means failed to rise in response. Reduced access and discomfort with the means that are available act as important deterrents to suicide for all Canadians. Providing deadly drugs, medical expertise, and personal assistance would make suicide much easier for those with this access. This goes beyond the intentions of equal access and provides differential encouragement for suicide, which is illegal under Canadian law.
Providing drugs and physician assistance would not give people with disabilities equal access to suicide; instead, it would provide them with encouragement to commit suicide when other citizens are discouraged. Mislabeling this as accommodation and equal access has no basis in reality. Suicide assistance for one segment of the population while other segments get suicide prevention is both discriminatory and dangerous.
Would the requirement for physician involvement provide adequate safeguards? Can physicians be expected to act rationally? Can physicians be trusted to serve the best interests of their patients?
Physician-assisted suicide puts decisions about killing patients in the hands of physicians. In most proposals, consultation with or review by a second physician would be required in order to provide a safeguard against inappropriate use of physician-assisted suicide. Such proposals place enormous trust in physicians to act responsibly and in the best interests of their patients. Is it reasonable to expect physicians to exercise this responsibility properly?
The answer to this question is that some, probably most physicians would exercise this responsibility wisely, but it is certain that some would not act responsibly. How many physicians would act irresponsibly or irrationally remains to be seen. Nevertheless, since proposed plans would give all physicians the power to assist suicides, even a small minority could be associated with large numbers of inappropriate deaths.
Substance abuse and psychiatric problems are not uncommon among physicians. For example, studies of female physicians showed 39% to 51% had a history of primary affective disorder (a problem commonly linked to suicidal thoughts and actual suicide), a rate far exceeding females in the general population (Holmes & Rich, 1990). The rate of suicide for female physicians is four times as high as for controls of the same age and gender (Holmes & Rich, 1990). Studies of male physicians are less conclusive. Rates of suicide for physicians as a whole appear to be about three times the rate for the population as a whole, although these rates may not be significantly elevated when compared to a sample matched for gender, age, ethnic origin, and socioeconomic status (Holmes & Rich, 1990). Drug abuse is a frequent problem among some groups of physicians (e.g., anesthesiologists, who are a likely group to be involved in physician-assisted suicide procedures, [Holmes & Rich, 1990]). Psychiatrists, a group likely to be involved in end-of-life decisions also have a particularly high rate of suicide (Holmes & Rich, 1990).
Narcotic abuse among health-care professionals represents a particular problem because it has not been uncommon for health care providers to divert some of their patients pain-killing medication for their own use. Often, the result is failure to adequately control the patient's pain. It would be unfortunate if these same professionals were involved in their patients' decisions to commit suicide.
The chronic problem of the sexual exploitation of patients by physicians and other health care providers reveals further reason to question the adequacy of physicians to safeguard the interest of patients (Shapiro, 1987; Smith & Bisbing, 1988). Research suggests that as many as 10% of physicians engage in the sexual exploitation of patients, in spite of ethical, professional, and, in many cases, legal sanctions against this behavior. These physicians selfishly ignore the harm done to their patients and act in their own self-interest. Is it reasonable to expect them to exercise greater altruism and responsibility when deciding who to assist with suicide?
Physicians roles in the Nazi T4 euthanasia program during the 1930s and 1940s indicate how poorly medical involvement serves as a safeguard. Approximately 250,000 people with disabilities were "euthanized" during this program. Every one of these people died as a result of a direct order from one of hundreds (probably thousands) of physicians who reviewed their files and certified that their life was truly "not worth living." Karl Brandt, the physician who headed the program, never denied his involvement when tried after the war, but he did deny that there was anything wrong with the program. He insisted that the "underlying motive was the desire to help individuals who could not help themselves and were thus prolonging their lives of torment" (quoted in Metscherlich & Mielke, 1962, p. 266). The T4 program was legal and legitimized by physicians who used such terms as "final medical assistance in the case of incurable invalids" (quoted in Metscherlich & Mielke, 1962, p. 239). When objections were raised about the election of Hans Sewering, a physician who is known to have sent more than 200 handicapped children to their deaths as part of the Nazi euthanasia program, to head the World Medical Association in 1992, Sewering indicated that he had never broken the law (Leaning, 1993).
Similarly, the conduct of some Dutch physicians under the current "assisted-suicide" program appears irresponsible. Fenigsen (1989) describes a Dutch physician who was convicted of homicide after admitting to killing five elderly patients without their consent. He was suspected in about 20 homicides of patients in "De Terp" old-age Home in the Hague, where the secret killing of patients was exposed in 1985. Witnesses testified that some of the individuals killed were not ill or debilitated but were only senile or uncooperative with the staff. Many other patients were threatened with euthanasia whenever they showed any sign of being uncooperative. Patients were killed with difficult to trace insulin overdoses. This doctor pleaded guilty to five murders and was found guilty for three murders. A citizens committee was formed to support the physician, and the Board of Physicians declared its alarm that this conviction might inhibit physicians or make them feel insecure in carrying out other euthanasia actions. A higher court dismissed the guilty pleas and declared him innocent; the punishment was abolished, and a civil court awarded the physician 300,000 guilders (about $200,000 Canadian) for his trouble.
In another case, aides at a Dutch nursing home who were killing patients indicated that they were engaging in this practice because the physician was too slow to euthanize patients (Fenigsen, 1989). The court refused to convict them because they appeared to have humane motives. Ironically, the murder of nursing home patients by staff is not uncommon. It has occurred in many countries (including those that do not allow euthanasia), and it is frequently defended as mercy killing (Sobsey, 1994). In reality, it rarely, if ever is done as an of mercy. For example, the husband of Cathy Wood, an American nurse's aid convicted of murdering patients at the Alpine Manor nursing home in Michigan, wrote the judge and defended her acts:
How much did she really take? All of the victims weren't even living. They enjoyed nothing, experienced nothing and were going to die. The families at the times of death were relieved at the ed of the suffering. (Ken Wood, quoted in Cauffiel, 1992. p. 485)
Cathy's own admission that "we did it because it was fun" (Cathy Wood, quoted in Cauffiel, 1992. p. 485), the fact that some of the patients killed were healthly and happy, and the fact that the patients were chosen by their names (Cathy Wood and her accomplices were trying to spell out "Murder" with the patients' initials) raises questions about her altruism (Sobsey, 1994).
Health care providers who murder patients are not that uncommon. They are among the most frequent and certainly the most prolific serial killers that plague our society (Sobsey, 1994). Euthanasia and assisted suicide can provide a smokescreen for their activities. Giving these people a license to kill legally is not an attractive prospect.
A survey among two random samples of Dutch doctors (52% had actually applied some form of euthanasia) revealed that 7% had defied the requirement that all other reasonable treatment be tried before euthanasia, 12% of physicians had ignored the requirement to consult with other physicians, and 26% of the physicians who applied euthanasia falsified the cause of death. This would translate to about 1000 cases per year of hidden cases of euthanasia. The authors conclude that most family physicians follow the rules most of the time (Van der Wal, van Eijk, Leenen, & Spreeuwenberg, 1992). Following most of the rules most of the time may not be adequate grounds for giving physicians the license to kill.
Would assisted suicide be based on devalued views of people with disabilities? Would assisted suicide bring about further devaluation and abuse?
The proposition that physician-assisted suicide is a rational act is false. This proposition depends on the fundamental assumption that suicide results from a poor quality of life and that people with health problems and disabilities always have a lower quality of life than people without health problems or disabilities. It depends on the assumption that a rational consideration of quality of life is the motivation for suicides. It depends on the assumption that the course and prognosis of an illness or disability is predictable and can be accurately forecast.
As stated earlier in this brief, the stereotype of people with chronic illnesses and disabilities suffering endlessly is not justified by research. Like all other members of society, people with chronic illnesses and disabilities experience a full range of emotions. Some are distressed, perhaps even suicidal, but others with the same illnesses and disabilities are enjoying life. People without disabilities also experience a full range of emotions. Some are distressed, and some are suicidal, while others are enjoying life. Suicide is no more or less rational for members of either group. People choose to commit suicide because they experience isolation, boredom, anger, betrayal, humiliation, or a variety of other negative emotions. The belief that disability or illness is a rational reason to commit suicide is based only on negative ideas about illness and disability.
Many years ago, Henry and Short (1954) proposed that suicide was related more to anger and blame than to quality of life. They suggested that if suicide were rational it should be more prevalent in societies where quality of life is generally lower. However, they also predicted that if suicide resulted from self-blame, with no external person to blame for an individual's difficulties, suicide would be more common in societies where quality of life is higher. This theory was tested and confirmed by Lester (1984), and empirical data confirm that suicide increases as quality of life improves. Similarly, if we assume that suicide is a sign of low quality of life we would have to conclude that White American males (22 suicides per 100,000) are extremely disadvantaged compared to Black American males (12 suicides per 100,000), White American females (5.3 suicides per 100,000), or Black American females (2.3 suicides per 100,000) (Gelman, 1994).
Finally, if suicide were a rational decision for people with chronic illnesses and disabilities, we would expect that such rational suicides would come in the later stages of an illness or when disabilities are most severe.
This is not the case. Studies of suicide in people with a variety of health problems indicate that suicide is much more likely to occur when symptoms are mild, in remission, or totally absent (e.g., Marzuk et al., 1988). Furthermore, the course of illnesses and disabilities are typically unpredictable. Beyond the basic fact that we will all die sooner or later, medicine is unable to predict accurately the length of most lives or the progress of most health conditions. For example, studies of physician's predictions of patient survival suggest that they often are only slightly better than chance. As a result, there is rarely any firm information upon which to base a rational decision to commit suicide.
As a result of these factors, decisions about whose lives are not worth living and who qualifies for assisted suicide can only be based on negative stereotypes about people with disabilities. Furthermore, by allowing these stereotypes to become the basis for assisted suicide, we would legitimize and reinforce these stereotypes. Many of the problems experienced by people with disabilities do not result from their physical condition; instead, they result from systematic marginalization and social discrimination (Sobsey, 1994).
People with disabilities are the victims of more crimes than people without disabilities, they experience educational and vocational discrimination, and they are among the poorest Canadians. Canada needs to respond to social problems with social reform. We need to provide a life worth living, not a final exit for people who can no longer cope with the abuse. If we responded to any other marginalized group with this kind of solution, there would be public outrage.
Could we tell murder from mercy?
Assisted-suicide and euthanasia are prohibited by law partly because they differ from murder only in intent. Society has a strong interest in protecting its members, and to do so, it must be able to tell the difference between suicide and murder.
A Saskatchewan case of a farmer who admitted killing his daughter provides an example of the difficulty inherent in proving intent. While this farmer's wife was in church, he killed his 12-year-old daughter in the garage and left her in bed for his wife to discover. When the medical examiner recognized that the girl had been gassed, the father admitted doing it, but he indicated that he killed her to release her from suffering because she had cerebral palsy. Did the daughter want to die? Was her suffering unbearable? Did the father act to help her, or did he just want to be rid of her? We must either take his word that his actions were altruistic or reject it. Unfortunately, there is no objective standard with which to decide his reasons for killing his daughter.
Procedural guidelines, such as requiring the consultation of two physicians or recording the patient's consent, provide only a little help in determining whether an act is murder or assisted suicide. For example, how can we know that the patient is accurately informed ? Health care providers often misinform patients. For example, Walton (1985) prepares physicians for working with patients with Amyotrophic Lateral Sclerosis (ALS) saying, "Certainly a responsible relative should be told the truth....In order not to destroy all hope, I prefer to say that the condition progresses slowly up to point...and may even subsequently improve....Comparatively few patients seem to be aware of the deception" (p. 376). The fact that physicians routinely engage in deceptions and even include this tactic in a textbook for new physicians makes it clear that in many cases the physician and the responsible family member will manipulate the information given to the patient in order to get the response they want. If they believe it is time to end the person's life, they will provide the information in a manner to ensure that the patient makes a "voluntary" decision to die.
Could the limits of assisted suicide be clearly defined? Would specific legislation eliminate gray areas of ambiguity?
Current events in Holland show that opening the door to some forms of euthanasia inevitably increases acceptance of other forms. For example, Fenigsen (1989) cites the cases of four nurses at the Free University Hospital in Amsterdam who secretly killed comatose patients. The Empoyees' Council defended them saying that they had been forced to take these actions by physicians who were too slow to order euthanasia. The court dismissed the charges because it found that they acted out of humane considerations. Although Dutch guidelines clearly restrict euthanasia to physicians, they have been used to legitimize many other forms of euthanasia. Rather than provide clear boundaries for the limits of acceptable and unacceptable euthanasia, the Dutch guidelines have merely created more gray areas.
Physicians often face difficult legal and ethical end-of-life decisions: for example, when to discontinue treatment and allow patients to die or when to continue treatment to alleviate pain even though death may be hastened by this treatment. Assisted-suicide legislation might be defended as providing clearer boundaries for physicians and assisting them with these gray areas of practice. In fact, the opposite will occur if physician-assisted suicide is permitted. Current law and ethical guidelines are very clear. It is illegal to kill a patient and to counsel or assist with suicide ([[section]]221[b] Criminal Code of Canada) Similarly, the Hippocratic Oath is clear: "I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect" (translated in Edelstein, 1967, p.4). As pointed out by Edelstein (1967), these words "can mean only that the doctor promises not to supply the patient with poison if asked by him to do so nor to suggest that he take it. It is the prevention of suicide, not murder, that is here implied" (p. 10). The law and ethical guidelines are crystal clear. Creating some exceptions can only increase ambiguity and provide a rationale for other illegal and unethical exceptions. Physicians will be faced with more and more difficult decisions about when these exceptions are appropriate.
Although the problems with ambiguous guidelines and the creation of gray areas around the fundamental protection of life have resulted in continual discussions of assisted suicide, Canadians have repeatedly rejected the notion of assisted suicide. For example, in 1993, the Canada's Law Reform Commission's Report on Euthanasia, Aiding Suicide, and Cessation of Treatment (Law Reform Commission of Canada, 1983) warned of the danger in decriminalizing assisted suicide and euthanasia:
The Commission therefore recommends against legalizing or decriminalizing voluntary active euthanasia in any form and is in favour of continuing to treat it as culpabable homicide. (p. 18)
Moreover, there can be other cases in which aiding suicide is done for far less altruistic motives, and which do warrant a legal penalty.The Commission agrees with that view and does not recommend that aiding suicide be decriminalized. (p. 21)
Similarly, the Canadian Medical Association, which represents 80% of Canada's physicians, sent "a strong message to Ottawa that change [in the assisted suicide law] is not welcome" (Adolph, 1994, p. A1) by voting against a proposal that would allow physicians to make up their own minds on assisted suicide. Only 73 (30.4%) of the 240 physicians who voted supported the resolution for doctors to make up their own minds, although the vote remained close because of a large number of abstentions. Nevertheless, the 30.4% of physicians who voted in support probably overestimates the percentage of supporters of assisted suicide since they only voted "yes" to making up their own minds, not "yes" to assisted suicide.
The rejection by Canada's physicians and the Law Reform Commission was the result of careful analysis and grave concerns. This rejection should not be dismissed as the rantings of some uninformed special interest group.
Previous bills to legalize euthanasia and assisted suicide in Canada have failed to gain adequate support, and the Supreme Court of Canada denied Sue Rodriguez the right to assisted suicide on September 30, 1993. The British Columbia Court of Appeal had already upheld the prohibition of assisted suicide in this case in February 1993. While the Supreme Court's decision was a close and minority members found a basis for allowing access to suicide, [[section]] 241(b) of the Criminal Code was upheld, and the decision of the Supreme Court should be seen as final. The majority decision warns that if exceptions were made to permit assisted suicide, "there could be no guarantee that assisted suicide could be limited to those who genuinely wish to die" (Smith, 1993, p. 6). This warning, taken with the experiences of Germany and Holland, should be clear enough.
Is illness or disability a rational reason for suicide?
Should access to assisted suicide be based on health status?
The man who in a fit of melancholy, kills himself today, would have wished to live if he had waited a week.
Terminal illness and permanent disability have been proposed as uniquely rational reasons for suicide. While it is true that medical conditions are sometimes associated with suicide, they are no more rational than other reasons, and they tend to be interwoven with a web of other reasons that are unrelated to health or disability status.
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Clinical depression is associated strongly with suicide and is commonly linked to state of health. Clinical affective disorders, typically depression, are present in about three quarters of all people who commit suicide (Black & Winokour, 1990). Research on suicide has increasingly shown a physiological component, which is demonstrated by genetic studies, chemical studies, and brain electrical activity studies (Maris, 1986). Depression and depression accompanied by substance abuse are the conditions most frequently associated with the desire to commit suicide. In June 1994, the Dutch Supreme Court ruled that physicians had a right to assist in the suicide of people with mental disorders, including depression, and that depression alone, with no other mental or physical illness, was adequate reason for assisting a person commit suicide. With a similar law in Canada, the vast majority of people who are now receiving suicide prevention services would become eligible for suicide assistance.
While it is worrisome that depression alone is viewed as an illness that can be "treated" with assisted suicide, it is even more worrisome that depression is rarely considered as a factor in assisted suicide. It is often simply assumed that those who are physically ill and wish to die are acting from rational motives. Nevertheless, depression is a critical factor in serious illness (Sullivan & Younger, 1994):
Depression is especially common among the medically ill. Studies have revealed that the most frequent precipitant for depression in the elderly is physical illness. Furthermore, the rate of depression has been shown to be higher in those who are severely ill.(p. 975)
The depressive symptoms that are most likely to impair a patient's capacity to appreciate his or her medical situation accurately are the distorted assessments of self, world, and future that typify depressive thinking. Depressive helplessness produces an underestimation of one's possible effectiveness in the face of serious illness. Guilt and worthlessness may make one believe that suffering and death are deserved and should not be forestalled. (p. 976)
Hopelessness is not a reflection of objective information about one's future. It is a state of mind influenced by attitude as well as biochemical processes. It is directly associated with depression. If suicide was a rational decision for people with health problems and disabilities, it would occur more frequently as the the individual's condition deteriorated, but this is not the case. Instead, suicide is more likely to occur soon after diagnosis.
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In reality, cases where the prognosis is a certainty are exceptional. In most cases, even physicians' most basic predictions about who will live and who will die are only marginally better than chance. Complex computer programs have been used to aid in prediction and have improved the accuracy, but even these make large numbers of errors. The APACHE (Acute Physiology, Age, and Chronic Health Evaluation) program often can predict who will live and who will die in the intensive care unit with a slightly better than 80% accuracy. This mean that even with advanced computer systems about one prediction in five will be wrong, and this is only a gross prediction of survival; finer predictions about the state of health or function for those who do survive are even more difficult. In one example of research on the accuracy of APACHE (Abizanda et al., 1994) to predict survival of Intensive Care Unit patients, the program correctly predicted the deaths of 47 (8%) patients and the survival of 419 patients (74%); but 29 (5%) who were expected to die survived, and 69 (12%) who were expected to live died. In other words, if all 86 patents expected to die were euthanized, 29 people (34%) would have been killed based on a false prediction of death. Other studies report similar results. One study used advanced techniques to categorize nonalcoholic liver disease patients into those who would live and those who would die, and it reported powerful results (p <= 0.001); but when these results are translated into predictions of individual cases, 12% of the "survivors" died, and 47% of those predicted to die survived (Schrander-van der Meer & Vogten, 1992). Such predictions seem like a poor basis for deciding who should be euthanized.
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Suicide among cancer patients also fails to be associated with more advanced stages of the disease, but it does seem to be associated with the use of certain medications and with a pathological fear of cancer (Mackenzie & Popkin, 1990). This pathological fear of cancer is commonly associated with clinical depression. One study of 44 terminally ill (43 with cancer) hospice patients found 33 (77%) had never considered suicide. Of the 10 (23%) who had thought about suicide, all 10 were found to be suffering from clinical depression (Brown, Henteleff, Barakat, & Rowe, 1986).
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Acquired Immune Deficiency Syndrome (AIDS)
Marzuk and colleagues (1988) found that suicide was 36 times as likely in men with AIDS as in other men of the same age; but all of the AIDS-related suicides in this study occurred within 9 months of diagnosis, and none of them had advanced forms of the disease. This suggests that depression and humiliation are likely to be powerful components in these men's decision to commit suicide. As suggested by Mackenzie and Popkin (1990), "the contemporary stigmata attached to this diagnosis may drive some to suicide" (p. 209). The solution to this problem is changing society's attitudes toward people with AIDS, not driving them to suicide and then helping them do the job. Certainly, some people with AIDS do choose suicide during later stages of the disease, but these suicides are also difficult to defend as inherently rational since these patients show brain changes that are often associated with memory loss, depression, personality changes, or even psychosis (Mackenzie & Popkin, 1990). Furthermore, while AIDS is normally a fatal condition, the course of the disease and likelihood of death at any specific time are unpredictable. For example, one study, using highly sophisticated techniques to predict who of 2,113 AIDS patients would die and who would be discharged, concluded that the system was very helpful because it correctly identified 66% of the patients who would die (Stitt, Lu, Dickson, & Klimas, 1991).
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Suicide appears to be more frequent among people with epilepsy and brain injury. However, this appears to be associated with brain damage in some cases and to the side effects of medications commonly used with epilepsy in other cases. Multiple sclerosis appears to associated with higher rates of suicide than found in the general population, but it is often associated with affective disorders and clinical depression. Huntington's Chorea is another neurological disease that is associated with increased rates of suicide, but again, it seems related to organic brain damage (Mackenzie & Popkin, 1990).
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Amyotrophic Lateral Sclerosis (ALS )
ALS or motor-neurone disease results in the degeneration of nerves that control muscles, but it does not appear to affect the brain in a manner that would be likely to cause an affective disorder. The disease results in progressive loss of all motor functions that eventually lead to death. The course of the disease is unpredictable, and it may progress rapidly for a period of time and then arrest for a significant period of time at any stage before another period of progression. Survival from the time of diagnosis can vary from a few months to many years. Depression and possible suicide are most likely to ensue shortly after diagnosis. For example, one patient described his "deep depression" and dreams about death after receiving the diagnosis. The depression became deeper as his ALS progressed rapidly and he was given a prognosis of not living for more than a couple of years. In spite of his depression and the doctor's negative prognosis, he resisted the urge to commit suicide. This man made his decision more than 30 years ago, and in those 30 years, he has completed his doctoral dissertation, married, had children, traveled around the world, written one of the all-time leading international best-selling books, become the world's best known theoretical physicist, and made a huge contribution to humanity's understanding of the universe (Ferguson, 1992). The man's name is Stephen Hawking. If Stephen Hawking was offered the assistance to commit suicide three decades ago during his depression, would he have taken the opportunity? Perhaps not, but if he had, the world might very well be a different place.
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Spinal Cord Injury
Suicide has increased substantially among people with spinal cord injury, but research suggests that many people with spinal cord injuries demonstrate impulsive and self-destructive behavior before sustaining their injuries. Nevertheless, most suicides that follow spinal cord injury occur close to the time of the original injury, suggesting that depression eases as the individual adjusts to his or her new lifestyle. Furthermore, the severity of the injury does not predict the likelihood of suicide.
Larry McAfee, who was paralyzed in a motorcycle accident and asked to be assisted with suicide, provides a powerful reminder that spinal cord injured people can adjust to a new lifestyle. The court approved his petition for a rational assisted-suicide, but disability-rights activists protested, suggesting that the court's willingness to assist him to die was based on his disability status, and therefore, people with disabilities did not have equal protection under the law. They also pointed out that McAfee wanted to die because he was receiving poor quality care. He was being shuttled from one nursing home to another, and the solution should have been better care and not helping him die. By the time the case was settled, McAfee was receiving better care, happier with his circumstances, and no longer wanted to die (Shapiro, 1993).
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Suicide and suicide prevention are important concerns for people with disabilities. For example, a recent study (Masuda, 1994) by DAWN Canada (DisAbled Women's Network Canada) indicates that 60% of women with disabilities have contemplated suicide, and 28% have attempted it; however, the report suggests that discrimination and abuse were among the reasons attempted suicide and suicide and not necessarily the result of a woman's physical condition. Canada should be able to find a better answer than assisted suicide to help ease the plight of these individuals.
The boundaries between rational and irrational suicide for people with chronic illnesses or disabilities remain illusive for the people who would volunteer for suicide and for those who would endorse and assist their decisions. This is not a case of small gray areas of uncertainty; instead, the majority of cases fall into a vast area of ambiguity.
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A NOTE ON ANIMAL EUTHANASIA
It has been argued that we "put dogs to sleep to end their suffering" and "why not show the same mercy for human beings?" The truth is that we do put some dogs are put to sleep to end their suffering. But, many more are killed because they are abandoned, because those responsible for them don't want to pay for their medical treatment, because they are sacrificed for experimentation or because we do not like the way they behave. It is intention of mercy that legitimizes all the other reasons. This kind of mercy should never be extended to human beings.
Advocates for euthanasia have suggested that suffering animals are put to death and people should be given the same dignity. If such an analogy is used to defend the mercy killing of humans, it is important to understand the reality of veterinary euthanasia, which is a much crueler truth. Very few animals are killed solely to end incurable suffering. Many are killed because they are merely unwanted, because they are no longer considered appealing, because their behavior is unacceptable, or because the people responsible for their care cannot or do not want to pay for treatment that would save their lives or ease their pain (Cohen & Sawyer, 1991; American Veterinary Medicine Panel on Euthanasia, 1993). All of these intentions are lumped together under the category of veterinary euthanasia. For example, the American Veterinary Medicine Panel on Euthanasia (1993) discusses euthanizing "healthy and unwanted animals. "
Statistics from the Edmonton Society for the Prevention of Cruelty to Animals (SPCA) for 1993 indicate something about the reasons for euthanizing animals: Of 17,147 companion animals (dogs and cats) admitted, 44% (7,559) were euthanized; and of those euthanized, 836 (11%) were young healthy animals killed simply because no one wanted them, 1437 (14%) were old healthy animals killed because they were unwanted, 2036 (27%) were killed because their behavior was unacceptable, and 3,250 (43%) were killed because of poor health or injury. According to the report, however, "many" of the 43% euthanized because of "poor health or injury" could have been cured and adopted if they had received treatment.
Common acceptable methods of animal euthanasia include microwave irradiation, decapitation, gunshot, electrocution, and penetrating captive bolt (American Veterinary Medicine Panel on Euthanasia, 1993). Other methods in use but "unacceptable" include drowning, bleeding, strychnine, cyanide, freezing, and rapid decompression. There are few legal safeguards regarding animal euthanasia: For example, Soave and Crawford (1981), in their text on veterinary law, simply recommend that veterinarians be sure to get the owner's signature on a consent form, make sure the person consenting is the real owner, and do not destroy animals at the request of minor children without parental consent. The notion of applying these practices to humans is absurd. Again, it is the rare exception (i.e., the animal with untreatable suffering) to kill an animal to release it from agony, but this rationale is used to legitimate the common practice (i.e., the healthy unwanted animal killed because it is unwanted).
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Involuntary euthanasia and nonvoluntary euthanasia, including euthanasia with substitute consent, are fundamentally unacceptable practices. Since they would not be under the control of the individual who is killed, they cannot be defended as increasing autonomy or personal choice. They would be impossible to implement in a manner that ensured that they were in the interest of the individuals whose lives were most directly affected. In short, there is tremendous potential for abuse.
Assisted-suicide or voluntary euthanasia would increase voluntary decision making and control over one's person for a small number of individuals; nevertheless, it does not constitute a civil rights issue of equal access since most people with disabilities who are able to make choices are also able to kill themselves by some means, even though these generally represent less preferred methods. Society generally attempts to discourage and prevent suicide for all its members, and it should respond in the same way when people with disabilities contemplate suicide.
The number of people with terminal illnesses and disabilities who would make truly voluntary decisions to end their lives would be extremely small. In order to extend this freedom to this small number of people, many more people would have their lives and care put in jeopardy. Based on the experiences with the Dutch and German euthanasia programs, it is likely that opening this door will permit more involuntary and nonvolunatry deaths than truly voluntary suicides. Putting so many people at risk for the possible benefit of a much smaller number is unacceptable.
If strict safeguards for physician-assisted suicide were applied and enforced (i.e., requiring a waiting period to ensure that the decision is consistent and not an impulsive reaction to a diagnosis; ruling out people with clinical depression or other confounding conditions, at least until treated; providing access to counsellors; keeping records of the information given to patients to ensure their is no undue influence; requiring consultation with a second physician prior court approval), the number of physician-assisted suicides in Canada would remain small (e.g., under 200 per year). If loose guidelines are employed, the number of euthanasia deaths will be much larger and increase over time (e.g., 2000-5000 a year within 10 years of legalization), but most will not be truly voluntary and would remain illegal under stricter regulations.
The health-care system should never be used as a substitute for the due-process protection of human life. If there are any cases that require special consideration to obtain assistance to commit suicide, these case should be heard in court, ensuring a high level of protection for the lives of all Canadian citizens.
Suicide by individuals with illnesses or disabilities is no more or less rational an act than it is for other citizens. The view that suicide is rational for people with illnesses or disabilities but irrational for other Canadians is based on a devalued and prejudicial view of people with disabilities.
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The following predictions are made about what will happen if assisted suicide is legalized for people with illnesses and disabilities in Canada:
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- A small number of people (e.g., 500 per year) will ask for and receive euthanasia. Even among this small number, questions will arise about how many were free of clinical depression, fully informed, and insulated from coercion and undue influence.
- A much larger number of people (e.g., 3000 per year) for which no voluntary consent exists will be killed.
- Law and guidelines will be routinely violated, but prosecutions of violators will be rare or nonexistent.
- Cases will arise in which the intent to murder appears apparent, but prosecutors will refuse to prosecute or defendants will be acquitted because of the assisted-suicide defense.
- People with disabilities and illnesses will report fear of involuntary euthanasia, threats of involuntary euthanasia, and pressure to end their lives.
- People with disabilities and illnesses will come to view the practice as fundamental and life-threatening discrimination.
- Physicians will report even more ethical and legal difficulty dealing with end-of-life decisions than previously existed.
- There will be increasing pressure to legalize nonvoluntary and involuntary euthanasia.
- Evidence will arise that some health care providers are attempting to encourage suicide as a cost-control measure or public health measure. For example, some health care providers will attempt to influence people with AIDS to accept suicide in order to eliminate the risk of infecting others and to save money.
- Eventually, any law that provides assistance for people with illnesses or disabilities to commit suicide while discouraging and prohibiting assisted suicide for other citizens will be found to violate Canada's Charter of Rights and Freedoms.
Involuntary and nonvolunatry euthanasia should not be legalized in Canada. Legalization of assisted suicide should be considered with great caution only if the following safeguards can be met:
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- Disability or illness should not be a consideration in legitimizing assisted suicide. If assisted suicide is legalized, it must be legal for all citizens with or without disabilities. Legal safeguards should be in place to determine that the person is fully competent, free of clinical depression and other mental disorders, has made a consistent decision over time, and is free from undue influence and pressure. Consistent with the principle of autonomy, the individual's reason for choosing to die should not be considered legitimate or illegitimate. If such safeguards are not adequate enough to protect all citizens, they are not adequate enough for people with illnesses or disabilities.
- Physicians and health care providers should not become the guardians of access to assisted suicide. If law allows assisted suicide, the courts should be the decision makers, providing safeguards against the abuse of these provisions. In any case of assisted suicide heard by the court, an advocate for prevention should be included.
- If physicians are involved in suicide decisions or acts, they should not be the same physicians that have treated the individuals whose lives they are now involved in ending.
- Suicide among people with illnesses and disabilities should be viewed as a public mental health concern like other suicides in Canada. It should be a subject of research and prevention programs.
- Physicians and other health care providers should become more involved in suicide prevention programs. Canada should work to reduce its status as having the third highest rate of suicide in the world among young people.
- More specific laws and guidelines need to be developed regarding the use of pain medication for people whose lives may be shortened by its use. It is recommended that individuals undergoing such treatment should be given a choice both at the early stages of treatment and at the time of administration of any life-threatening medication.
- More specific laws and guidelines need to be developed on withholding medical treatment. These guidelines should be developed to help define what constitutes heroic care or extraordinary efforts, which need not be used in every case. They should also be designed to identify medical discrimination and inappropriate withholding of care.
- Prosecutors should prosecute cases of illegal euthanasia whether they are committed as an act of commission or omission.
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SUGGESTED READINGS ON EUTHANASIA
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- Abrams, R. C. (1988). Dementia research in the nursing home. Hospital and Community Psychiatry, 39(3), 257-259.
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- Lecso, P. A. (1986). Euthanasia: A Buddhist perspective. Journal of Religion and Health, 25(1), 51-57.
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