The first person to choose a statutory sanctioned death with physician assistance was Bob Dent of Darwin, Northern Territory, Australia, who died September 22, 1996. This was possible under the Rights of the Terminally Ill Act which had become effective July 1, 1996 in the Northern Territory. By chance one of us was in Australia and therefore able to observe the resulting furore, which ran the gamut from approval to vociferous condemnation.
In particular, we were struck by a letter dictated by Bob Dent to his wife, outlining why he was making this choice and pleading that this “most compassionate legislation in the world be respected”.1 He described an incontinent, pain-racked, totally dependent existence exacerbated by watching the suffering of his wife as she cared for him. He stated that he was “immensely grateful” that he could end his life in a dignified and compassionate manner. In addition he asserted that “the Church and State must remain separate. What right has anyone because of their own religious faith (to which I don't subscribe) to demand that I behave according to their rules until some omniscient doctor decides that I must have had enough and increases my morphine until I die?”1
In this paper we will comment on some of the legal and ethical ramifications of this complex situation. Only physician-assisted death for competent, terminally ill persons will be discussed. Our society believes in the principles of individual autonomy, liberty, justice and democracy. We will argue that the interaction of the traditional value-of-life ethos, certain religious beliefs, and the stark realities of medicine at the end of life, has most commonly resulted in an arbitrary “line in the sand” that is inconsistent with the above principles.
The legality of active euthanasia
Thirty-four states of the United States, including Washington and Oregon, have statutes explicitly criminalising assisted suicide. One state, Oregon, as the result of a citizen initiative ballot (measure 16), has allowed a specific departure by passing a law permitting physician-assisted death under very restricted conditions. However, because of court challenges, initially no legally sanctioned physician-assisted death occurred. In May 1997, opponents of the law successfully persuaded the lower house of the Oregon legislature to return measure 16 to the voters for possible repeal. The principal opponents to measure 16 are Physicians for Compassionate Care, whose leader is a devout Catholic.
Previously (February 1997), the ninth circuit federal appeals court upheld measure 16 but allowed a stay to remain in effect until a ruling by the US Supreme Court. The Supreme Court ruled in June 1997 (considering also a similar opinion rendered by the second circuit federal appeals court), and effectively refused to grant Americans a constitutional “right to die”. “However, their ruling did not preclude states from passing laws that would establish such a right: in fact, five of the nine justices suggested they might support such a claim in the future”.2 Most recently (November 1997) 60% of Oregon voters rejected the attempt to repeal measure 16. The federal appeals court lifted the stay barring implementation of the law. Both proponents and opponents of this “only one of its kind in the world” statute predict “the adoption of similar measures in other states”.3
In Australia, the Northern Territory legislation was short-lived. In March 1997, the federal parliament effectively repealed the “state” legislation by passing in the Australian senate the Euthanasia Laws Bill, commonly known as the “Andrews Bill” after its unapologetically doctrinaire architect. A member of the Australian senate, he is also described as a “father-of-five and lawyer in bioethics”.4 However, draft legislation in the state of South Australia, if passed, will challenge this federal law. Between September 1996 and March 1997 four competent terminally ill persons were able to exercise the right to physician-assisted death. Although criticisms were made claiming the contrary to be true, both the Oregon and Northern Territory laws had exhaustive provisions designed to safeguard the integrity of the legislation and prevent abuse.5, 6
Just how did society arrive at the present impasse where we heatedly debate “right-to-die” legislation? In the past most people died relatively quickly as a result of accident or illness. Nowadays, the rapid increase in medical knowledge, technology, and intervention often allows the terminally ill to linger. Despite the advances in palliative care the death process is too often protracted, painful and undignified.
Therefore it is hardly surprising that in both the United States and Australia public opinion polls have consistently supported physician-assisted death. For instance, a 1994 Harris poll found that 73% of Americans favoured physician-assisted suicide7; 75% of Australians in a 1995 poll supported voluntary euthanasia laws.8 In Oregon in a February 1997 poll 61% answered “yes” to the question: “Shall the law allow terminally ill adult patients the voluntary informed choice to obtain a physician's prescription for drugs to end life?” An indication of social division even in Catholicism is that 50% of the Catholic voters answered “yes” to the same question.9
It is difficult to generalise about physician opinion with regard to physician-assisted death. Investigation of current attitudes reveals a complex situation. Recently the Oregon Medical Association changed its formerly neutral stance and specifically opposed measure 16, the 1994 voter referendum legalising physician-assisted death. However, this is possibly a reflection of the intense lobbying by the aforementioned Physicians for Compassionate Care, as previously two-thirds or more of Oregon physicians surveyed favoured a patient's right to obtain a doctor's help in hastening death in certain circumstances.10
In Australia (1994), of 1268 physicians on the New South Wales state register surveyed by Baume, et al, 59% answered “yes” and 3.3% “it depends” to a question favouring physician-assisted death.11 In 1995 the same researchers looked at the question of religious affiliation and the practice of euthanasia and found that attitudes varied significantly according to religious affiliation, with “non theists” most sympathetic. The “theists” who reported a Protestant affiliation were intermediate in their attitudes. Perhaps most interesting was that 18% of Catholic medical practitioners who responded recorded that they had taken active steps to bring about the death of patients when requested.12 In Michigan, the “most important personal characteristic” defining physicians' views against “assisted suicide” was a strong religious affiliation.13
Discussion of principles
Whenever these issues are debated certain terms keep appearing: “autonomy”, “liberty”, “justice”, and “best interests”. For a non-expert to have any hope of understanding these terms, it is necessary to look at current medical reality. The ninth circuit court of appeal judges observed that “today, doctors are generally permitted to administer death-inducing medication, as long as they can point to a concomitant pain-relieving purpose”.14 Physicians are aware that the medication may have a “double effect”, a term which “originates in Roman Catholic moral theology, which holds that it is sometimes morally justifiable to cause evil in the pursuit of good”.15
The American Medical Association appears, in the following statement, to subscribe to the euphemism of “double effect”: “The intent of palliative treatment is to relieve pain and suffering but the patient's death is a possible side effect of the treatment. It is ethically acceptable for a physician to gradually increase the appropriate medication for a patient, realizing that the medication may depress respiration and cause death”.16 One wonders whether “double effect” really means “double standard”. It seems that the debate is actually about who gets to have input into decisions regarding death—one is reminded of the “omniscient doctor” referred to in Bob Dent's final letter. We can only consider a sampling or snapshot of an ethically and legally complex and confused situation, but will nevertheless attempt to reach some understanding. Several ethical principles in our society bear on this discussion.
Liberty and individual autonomy
In the United States autonomy or the principle of individual decision making is highly valued. The “liberty interest”, an individual's right of choice, is guaranteed in the Fourteenth Amendment to the United States Constitution. Thus the issue of physician-assisted death is as much about control as about dying. Does a traditionally paternalistic medical profession continue to have the ability to override a competent, terminally ill patient's wishes, to insist on the right to “know best” in this crucial end-of-life decision? It appears quite contradictory that in the United States, at least, the competent terminally ill patient has the right to make a legally binding advanced directive in anticipation of inability to choose withdrawal of treatment (for example gastrostomy tubes), but is not permitted to hasten death by means of additional medication given with physician advice and/or assistance in the final stages of illness.
The ninth circuit judges were not impressed by the argument that physician-assisted suicide is different in kind, not degree. They drew an analogy between the withdrawal of a gastrostomy tube so that the patient starves to death, and prescribing analgesics to relieve pain when these also depress respiration and result in the patient's death. In the former, the cause of death is starvation, and in the latter, provision of analgesics. In neither case did the patient die of the underlying disease or injury. Addressing the issue of physician-assisted suicide, the judges stated: “We see no ethical or constitutionally recognizable difference between a doctor's pulling the plug on a respirator and his prescribing drugs which will permit a terminally ill patient to end his own life.... To the extent that a difference exists, we conclude that it is one of degree and not one of kind”.17 These judges clearly recognised that some, perhaps many, physicians do discreetly help their patients to die and acknowledge privately that this is so.
If autonomy is a highly valued principle it is logical that patients, especially, and possibly family, should have the right to participate in all end-of-life decisions. Why should the most crucial end-of-life decision be arbitrarily barred? The criminalising of physician-assisted suicide is effectively a prohibition of suicide for many terminally ill patients. The judges held that the “liberty interest” should allow competent, terminally ill patients the right to choose the time and manner of their death. They considered that adequately rigorous safeguards could be implemented in the decision process to prevent abuse. “We believe that the possibility of abuse ... does not outweigh the liberty interest at issue”.18
To most people, medical justice means the fair and equal treatment of patients. The current situation has elements of injustice. For instance, often competent, terminally ill patients are too debilitated to take active steps to end their suffering should they choose to do so. As it is an offence in most states for anyone to assist a suicide, many terminal patients are effectively denied private options available to the non-terminally ill.
There is a perception that any change in the status quo will inevitably lead to widespread abuse. This rationale is hard to follow. Why should allowing patients to determine the time and manner of their deaths necessarily lead to widespread abuse and/or injustice, as if there were some cause and effect relationship?
More than 20% of physicians in both the United States and Australia admit to taking deliberate action to end the lives of particular patients. This situation almost certainly disproportionately benefits the more privileged in society because they are much more likely to have a relationship of trust with a medical practitioner who will discreetly alleviate their suffering. A remark of the former Northern Territory chief minister is of interest. When commenting on the demise of his legislation, he observed that the senators who voted for repeal “belong to that privileged, wealthy group who have access to voluntary euthanasia themselves”.19
The church may be another contributor to injustice in this area. In Michigan approximately 30% of doctors who opposed assisted suicide did so primarily because of a strong religious identification.13 The principal opponents of both the Oregon and Northern Territory legislations were strongly Catholic. A number of other studies suggest that among the general population, fervent religious belief is an important predictor of opposition to physician-assisted death.13, 20, 23 It is almost a truism that in a free society people must have freedom of religious belief. As the ninth circuit judges state: “Those who believe strongly that death must come without physician assistance are free to follow that creed, be they doctors or patients. They are not free, however to force their views, their religious convictions, or their philosophies on all other members of a democratic society, and to compel those whose values differ from theirs to die painful, protracted, and agonizing deaths”.24
An important factor frequently overlooked is that recognising a right does not automatically require an action. As stated by the judges, patients and physicians should be free to exercise their conscience. If a choice were extended to both patients and physicians, patients would have the ability to select a physician holding views compatible with their own. A climate of secrecy fosters neither justice nor patients' best interests and society should allow choice among circumscribed options.
The plurality of communities in postmodern society results in religious people making various determinations of God's will, rather than presenting a definitive perspective on God. Although many Christians oppose physician-assisted death, a Biblical interpretation that might support this perspective is indicated below.
However, it should be first noted that in the absence of an ultimate religious morality it is dangerous to expect the state to substitute for God. The modern state should establish moral boundaries of permissible behaviour but should also recognise the limitations of secular reasoning.25 On disputed issues, it is not possible to establish simple moral guidelines acceptable or persuasive to all moral or religious communities.
It is not our intention here to develop a moral theology of physician-assisted death, rather to indicate briefly the direction one might follow by noting supportive Biblical perspectives. One example is that of religious freedom. This doctrine is well illustrated in the story of the fall of Adam and Eve. The value of their freedom to choose was deemed greater than the catastrophic loss for all humankind that followed their choice. A second example, the traditional concept of life after death would seem to question the value of ekeing out every moment of life when the whole of existence goes far beyond temporal death. The Bible portrays a God who values quality of life (both personal and communal), as seen in the story of the patriarch, Moses. In the Biblical portrayal of the conclusion of Moses's life, his health, long life and great contribution to the Hebrew people are more eulogised than his death lamented.26
Another area which appears to contradict “best interests” is the impact of terminal illness on patients' families. First, how people die irrevocably influences how we remember them. Surely few would wish to be remembered or to remember a loved one as helpless, incontinent, pain-racked or sedated, as was graphically expressed in Bob Dent's final letter. Currently it is illegal to assist suicide in two-thirds of the United States. Consequently thinking people who are in unbearable pain die alone (if they commit suicide) because they do not want to put loved ones at risk.
For instance, a leading supporter of the Oregon Death with Dignity Act is prompted in part by the fact that his wife of 49 years committed suicide alone, which resulted in his subsequent investigation by the coroner and police.27 When considering the possibility of this kind of investigation the ninth circuit judges observed that almost all who agreed to assist the dying avoided prosecution but would “likely suffer pain and guilt for the rest of their lives”.28 Likewise those who did not assist often question whether they should have tried to spare their loved ones. “This burden would be substantially alleviated if doctors were authorized to assist terminally ill persons to end their lives and to supervise and direct others in the implementation of that process”.28 Indeed physician-assisted suicide could prevent some premature suicide, in that patients would know they had control over the time and manner of their death.
However, back to the Australian scene, where fully legalised active euthanasia has been practised. When the results of the vote in the Australian senate to repeal the Rights of the Terminally Ill Act were announced at 1:00 am on March 24,1997, the sponsoring senator hugged his wife, who was cradling their three-week-old baby.4 This is a powerful image—the defeat of “death” in the presence of a new life. At such times an image like this may influence thinking more powerfully than carefully reasoned argument.
However, a close examination of the late twentieth century medical reality reveals that 80 to 85% of people in the United States die in institutions, 70% of those after a decision to withdraw or withhold treatment,29 and that the great majority of these are elderly. Some recent reports suggest that attitudes to physician-assisted death become more positive with age,21, 30 although this is not a uniform finding.13, 20 It may be for some that a closer acquaintance with the possibility of death invites further reflection on the question of autonomy. Such a change in attitude could result from the greater wisdom, maturity and tolerance that many people develop as they grow older.
Finally, autonomous individuals will not have uniform opinions. In particular, people will differ and change according to age, religion and circumstance. A democratic society that honours justice and liberty should acknowledge and permit these divergent opinions, and allow the terminally ill a degree of freedom as to when and how they die.
People die every minute in Canada, but how they die has become increasingly contentious as the demand for physician-assisted death and euthanasia has become louder and more widespread. Several events have propelled the debate around choice in end-of-life care, including the posthumous release of a video in which infectious disease expert Dr. Donald Low expressed his frustrations over his inability to control the manner of his death, the passing of Bill 52 in Quebec and the Supreme Court’s decision to hear the Carter case challenging the constitutionality of the law against assisted suicide. Baby boomers are demanding more autonomy and choice in dying. Is the medical profession listening?
One week after a CT scan revealed he had a midbrain tumour, Dr. Donald Low began talking with his wife, Maureen Taylor, about assisted dying. As an internist and microbiologist for almost 40 years, Low knew the tumour was virtually untreatable, and that the end would be messy. While he allowed his physicians to steer him towards a biopsy, a ventriculoperitoneal shunt, chemotherapy and radiation, he never let himself or his family be lulled into a sense of false hope. For seven months, Low and Taylor researched the means that would provide him with a peaceful death, in his own home, at the time of his choosing. But even with Low’s connections in the international medical community, and despite his access to potent drugs, Low died the death he feared: paralyzed, unable to communicate with his family, sedated so that he could tolerate the intolerable.
Why make people suffer for no reason, when there’s an alternative? asked Low in a video interview taped eight days before his death (Cancer View Canada 2013). A lot of clinicians have opposition to dying with dignity. I wish they could live in my body for 24 hours, and I think they would change that opinion.
While Low was dealing with his terminal brain cancer in the winter and spring of 2013, his Mount Sinai Hospital colleague, Dr. Larry Librach, was even closer to death. One of Canada’s leading palliative care specialists, Librach died of pancreatic cancer in August, peacefully and at home, according to his family. Although he advocated for improved palliative care for all patients at the end of life, and would not have chosen an assisted death for himself, Librach believed that palliative care would not suffice for a minority of dying people.
Even before his own diagnosis, Librach was an expert witness at the British Columbia Supreme Court in a legal challenge to the prohibition against medically assisted suicide. There were several plaintiffs, including Gloria Taylor, a B.C. woman suffering from amyotrophic lateral sclerosis (ALS). Librach later told CTV News (2013), “The best of palliative care will still not prevent people, like Gloria Taylor, from saying, that’s great, but I still want control over the end of my life. And I don’t see that there’s any ethical or other reason why we shouldn’t allow that when there are appropriate safeguards.”
Urgency – Why Now?
As two high-profile physicians, Librach and Low spoke eloquently, in the last months and even days of their lives, about the pressing need to improve end-of-life care in Canada. Indeed, before he died, Librach co-authored a commentary published posthumously in the Canadian Medical Association Journal, arguing that doctors need to begin planning for the likelihood that physician-assisted death (PAD) will soon be legal in Canada (Downar et al. 2014). If the Supreme Court of Canada “strikes down the laws prohibiting physician-assisted death,” the commentary suggested, “physicians may be left to operate in a legal vacuum (as they were when the provisions in the Criminal Code regarding abortion were struck down).” In other words, if doctors are content to let Parliament or the Courts make decisions on PAD, they may deny themselves a voice when it comes to articulating public policy and practice on one of the most pressing healthcare challenges of our time. That is the practical and ethical dilemma confronting doctors on the cusp of a demographic tsunami.
Aging Boomers: Dying Their Way
The baby boom demographic, which views choice and autonomy as a given in so many aspects of life, is beginning to demand choice in death. Surveys show a majority of Canadians would prefer to die at home in the presence of loved ones (Lau and Menec 2007). If not at home, then they wish to die in a hospice where specially trained nurses and physicians provide symptom relief as their families gather at the bedside. Few would choose to spend their final days in a hospital ward or in an intensive care unit, and yet this is where almost 70% of Canadians die. Less than a third receive palliative or hospice services, with significant inter-provincial disparities (Canadian Hospice Palliative Care Association 2013).
Palliative Care Overview
The emphasis on patient-centred care has revolutionized medicine today, but our healthcare system is still more comfortable over-treating patients in hospital at the end of their lives than in withdrawing treatment or intervening to end suffering. Largely that’s because universal medicare was legislated in 1966 as a hospital-based and physician-delivered pay-for-service model. That system worked when most hospitalizations were for acute episodic conditions; the earliest boomers were in their 20s and life expectancy was 75. As the baby boom matures, the average age is soaring – 15.3 per cent of Canadians were over 65 in 2010 – and so is life expectancy. It reached 83 for women in 2011 and is projected to hit 87 in 2030.
Many of those people are living with complex and chronic illnesses, a phenomenon that has created service gaps in our healthcare model. Largely because homecare was not part of the original medicare equation, it remains a healthcare orphan, consisting of a series of underfunded and patchwork operations that are not portable from one province to another. Consequently, many families turn to hospital emergency rooms rather than primary care providers when a patient is in a perceived crisis. More than 40% of cancer patients visit an emergency room in the last two weeks of their lives, an often futile and inappropriate use of these services (Picard 2014). If these patients and their doctors had honest discussions about their prognosis, if they had access to free and powerful palliative drugs at home, if their families could count on home nursing and personal support, surely emergency room visits and hospitalizations would plummet.
Not every person has the resources and support to be able to die at home, and for them, hospice facilities provide a warm and compassionate place. Usually these facilities require that patients have a prognosis of less than three months, but in reality, most don’t need that long. The average stay is less than three weeks. The economic advantages of hospice and home palliative care over hospital care are stark: less than $500 per day for the former versus $1,000–$3,000 per day for the latter (Parikh et al. 2013). That the majority of hospices rely on charitable donations to operate in the absence of more support from governments is astounding. And the waiting lists for beds in hospices means many patients never get there – the local hospital is their last and least appealing resort.
Palliative Care – The Patient’s Perspective
Several studies show that providing advanced cancer patients with palliative care improves the quality of their end-of-life experience and in fact, extends their lives. Good palliative care offers patients relief from many of the symptoms that cause them suffering and focuses on their emotional and psychological health. If the symptom is pain, this could mean strong opioid medications or even targeted radiation therapy. If the symptom is anxiety or insomnia, benzodiazepines or hypnotic agents can be used. Patients with severe shortness of breath often get relief from opioids along with oxygen. All of these medications can be administered in hospice and at home. When a patient’s illness is very advanced, some palliative specialists will offer continuous palliative sedation with intravenous midazolam and other drugs, which effectively puts the patient into a coma until death occurs naturally. Under palliative sedation, the patient presumably feels no hunger or thirst, pain or anxiety. This also means the patient can no longer move from the bed; requires toileting and frequent position changes to prevent bed sores; and, most important, can no longer speak to or hear their family and friends.
I’m not afraid of dying. I could make that decision tomorrow, said Low in his interview. I just don’t want to see a long protracted process where I’m unable to carry out my normal bodily functions and talk with my family and … enjoy the last few days of my life.
The time from initiation of continuous palliative sedation varies depending on the function of the heart, lungs, kidneys and other systems. Being otherwise fit and healthy before his diagnosis, Low died six days after sedation was initiated. He received excellent palliative care in his own home, but it was certainly not the death he would have chosen.
While there will always be patients and their families who want to prolong life for religious, cultural or psychological reasons, polls show a solid two-thirds of Canadians consistently say they’d like to have the option of a PAD at the end of life (Environics 2013). Language is important when discussing issues around hastening death, and those who advocate for this option avoid using the loaded word “suicide” for people who get medical aid to help them die.
There are almost two decades of experience with euthanasia and assisted dying in other jurisdictions: the Netherlands, Belgium and Luxembourg allow both assisted suicide and euthanasia under prescribed circumstances for adults of sound mind who are terminally ill or suffering from an incurable condition causing intractable physical or psychological suffering. The Netherlands and Belgium have amended their legislation to make euthanasia and PAD available to terminally ill children (12 and older in the Netherlands and of any age in Belgium). Switzerland allows non-residents to have PAD at a private clinic called Dignitas, but doesn’t sanction euthanasia. Other European countries including France and Great Britain are discussing policy options, as are Australia (where PAD was briefly legal in the Northern Territory) and New Zealand.
In 1994, Oregon became the first jurisdiction in North America to pass a Dying With Dignity Act (DWDA), allowing PAD (but not euthanasia) under strict conditions for terminally ill adults of sound mind. Washington State and Vermont have adopted variations of the Oregon protocol, and courts in two other states, Montana and New Mexico, have established legal defences for doctors who have helped terminally ill patients to die.
In Oregon, patients who receive prescriptions for lethal medications must be terminally ill adults with a prognosis of less than six months to live, verified by two physicians. The patient must make the request twice, at least 15 days apart. If either physician is concerned about an underlying psychiatric issue, the patient must be assessed by a qualified psychiatrist. Patients get mandatory counselling on other end-of-life options, including palliative care, and they may withdraw the request at any time. No physician or pharmacist is compelled to write or fill the prescription, but must refer the patient to other providers if they decline. No one can assist patients in taking the medication, which imposes an anxiety-inducing time constraint. If patients wait too long, they may be unable to consume the lethal potion on their own; if they plan their deaths when they are still physically capable, they may die sooner than they wish and before it is medically necessary.
Barbiturates such as secobarbital and pentobarbital are the most commonly prescribed drugs for assisted dying. According to reports over the past decade from Oregon, time of death after ingestion is usually a matter of minutes, though there have been case reports of up to four days.
The Slippery Slope
Those who oppose PAD often argue it will make disabled, elderly, poor and demented patients vulnerable to bureaucratic death squads or soft-headed healthcare workers who take it upon themselves to determine who should die and who should live. Expanding PAD and euthanasia to terminally ill children and the chronically depressed, as well as sensational examples (including a young man who requested euthanasia after a botched sex change operation and middle-aged deaf twins who feared incipient blindness would mean they could no longer communicate with each other or live independently) are cited as evidence of the slippery slope (Hamilton 2013).
We feel these rare examples disregard the clear evidence in medical literature that the slippery slope has not been realized. Studies in Oregon and the Netherlands show that legalizing assisted dying has improved palliative care options for all citizens (Rietjens et al. 2009; Steck et al. 2013). Those who pursue assisted dying are more likely to be white and of higher socioeconomic status, which should allay fears that the poor and disadvantaged will be steered towards this decision (Sandeen 2013).
For more than 14 years, both legislators and the public in Oregon have reported high levels of satisfaction with the DWDA (80% in 2012) (Oregon Public Health 2013). In 2012, Oregon doctors wrote 122 prescriptions for lethal medications, and there were 71 deaths attributed to the DWDA program. This corresponds to 21.9 DWDA deaths per 10,000 total deaths (Okie 2005). The vast majority are cancer patients, and the most cited reason for seeking assisted dying is fear of loss of autonomy and loss of dignity. Fear of pain remains a distant third reason, which reflects improvements in palliative control of pain. The number of requests for lethal medications has increased only slightly over the years, and the state has never expanded its inclusion criteria. Although the number of physicians who write prescriptions for lethal medications under the law has increased incrementally each year in Oregon, it appears the program works even with only a handful of physician participants. In 2013, 62 physicians wrote 122 prescriptions (range: 1–10 prescriptions per physician) (Okie 2005). Many patients’ families report their loved ones feel less anxiety and more contentedness just having access to the medication, but die peacefully without needing to use it (Okie 2005).
The Legal Landscape in Canada
PAD has made headlines in Canada for more than two decades, and stirred private murmurings around dinner tables ever since Sue Rodriguez, a B.C. woman suffering from ALS, unsuccessfully petitioned the Supreme Court of Canada for help in dying in 1993. “If I cannot give consent to my own death, whose body is this? Who owns my life?” Rodriguez asked rhetorically in an impassioned video plea for an end to the prohibition in the Criminal Code against assisting a suicide – a crime that carries a maximum penalty of 14 years in prison. The following year Rodriguez died with the help of an anonymous doctor. Her friend, former MP Svend Robinson, was at her side. Twenty years later he remains strongly committed to legalizing PAD. “You either have to have a death set in the shadows,” he said of the current situation in Canada, “or, if you can afford it, you go to Zurich” (Martin 2013).
A legal challenge is again before the highest court in the land. When Gloria Taylor became part of the Carter et al. lawsuit, filed in April 2011 in the British Columbia Supreme Court, the plaintiffs argued that the Criminal Code prohibition against assisting a suicide was unconstitutional. Madam Justice Lynn Smith agreed with them. That decision was successfully appealed by the federal government in October 2013, but the matter is still not settled. The Supreme Court, which narrowly ruled against Rodriguez in 1993, will revisit assisted dying in October 2014 when it hears the B.C. case on appeal. If the Court decides that the Charter of Rights and Freedoms guarantees a dying person’s right to have help ending his or her life, as seems likely, Parliament will have to drop or redraft Section 241 of the Criminal Code, a move that the current government has steadfastly resisted.
Robinson contends that ordinary people are ahead of the politicians on PAD. “People believe profoundly and strongly and overwhelmingly in what Sue was fighting for 20 years ago,” he said. “If anything, that is even stronger today” (Martin 2013).
While that appears to be true in most parts of the country, Quebec is at the forefront of change, as it was with abortion. In June 2013, the Quebec National Assembly tabled Bill 52, the most far-reaching end-of-life legislation in North America thus far. Taking a jurisdictional end run around the federal government, Quebec argued that end of life (combining PAD and euthanasia) falls under the provision of healthcare, a provincial responsibility, and has nothing to do with the Criminal Code, a federal responsibility. The Bill, which was the product of years of study and consultation on end-of-life issues, died on the order paper this spring when Parti Quebecois Premier Pauline Marois called a provincial election. Even though her party was defeated, the new Liberal government of Phillipe Couillard plans to reintroduce the Bill, which had all party support in the last session of the Assembly.
Quebec remains the only province that has conducted extensive public consultations on end-of-life care. As far back as 2009, the National Assembly created a bi-partisan Select Committee to study PAD. The Committee interviewed experts, circulated a public questionnaire, conducted public hearings in eight cities and tabled a 175 page “Dying with Dignity” report in March 2012 with two dozen recommendations for drafting a comprehensive law. With the report in hand, the Quebec Ministry of Justice struck a panel, headed by lawyer Jean-Pierre Ménard (accent), to examine the legal issues raised by the Select Committee’s recommendations, including the jurisdictional issue of circumventing the (federal) Criminal Code by treating medical help in dying under provincially regulated healthcare. The Ménard Report supported the Select Committee’s recommendations, which included the right of ordinary people to make decisions about the timing and manner of their deaths, improvements to palliative care and the provision of assisted suicide and euthanasia (under strict conditions) in end of life care – all of which became the basis for Bill 52.
If Quebec’s newly elected Liberal government reintroduces and passes Bill 52, the federal government has already signalled its intention to challenge it. “The laws that prohibit euthanasia and assisted suicide exist to protect all Canadians, including those who are potentially the most vulnerable, such as people who are sick or elderly, and people with disabilities,” said Justice Minister Rob Nicholson after the Bill was introduced in the National Assembly in 2013.
But at least one member of the Harper government has had the courage to publicly disagree with his colleagues in parliament. Indeed, the life and political career of Manitoba MP Steven Fletcher is an encouraging example of the shifting signs of progress. In late March, he introduced two private members’ bills. Bill C-581 called for amendments to the Criminal Code to allow PAD (which he defines as both assisted suicide and euthanasia), and Bill C-582 sets out criteria for establishing a Canadian Commission on PAD. The Commission would collect information, produce an annual report, commission research and make recommendations to the Attorney General. Fletcher, a quadriplegic, who survived a devastating collision with a bull moose on a remote highway in northern Manitoba, contends that life should always be the first choice, but for some it will not be the only choice. Both decisions should be respected in his view. His PAD Bill, which faces huge odds, establishes strict conditions under which adult Canadians of sound mind, who are suffering physically or psychologically from an illness, disease or disability that cannot be alleviated by any acceptable treatment, may apply for PAD.
Conclusion – How Do We Move Forward?
While the public, some lawyers and even some politicians, especially in Quebec, are actively involved in the conversation about dying, what are oncologists, primary care and palliative care physicians and other allied health workers – the professionals who are most acutely involved with end-of-life care – doing to mobilize public and private conversations with their patients about PAD and euthanasia?
Surprisingly little. And as Canadians look to health professionals for leadership on health issues, this must change. There are some positive signals. The Royal Society of Canada convened an expert panel on end-of-life decision-making and released its recommendations in November 2011, calling for the legalization of “some form of assisted suicide and voluntary euthanasia.” It also suggested that if the federal government refuses to amend the Criminal Code, provinces and territories, under whose jurisdiction the administration of justice falls, should refuse to lay charges in cases of assisted suicide and euthanasia. That’s another attempt to take an end run against federal intransigence on PAD, but it could encourage amateurs and non-medical personnel to intercede in end-of-life care – without facing legal or criminal consequences.
Last year a Canadian Medical Association (CMA) survey found that 26% of doctors in this country are already prepared to help patients die, should the laws change to allow them to do so. While that result dismayed Don Low during his illness (he would have liked broader support), many in the assisted dying movement saw it as encouraging. As the experience in Oregon shows, only a fraction of doctors are required to implement a safe and successful assisted dying program, and the counselling of patients who want to choose the time of their own death should be the purview of physicians trained and knowledgeable in end-of-life issues. We don’t need dermatologists and plastic surgeons writing prescriptions for barbiturates. We do need provincial and national medical organizations to show leadership and a willingness to hear the views of Canadians who want this option. Nevertheless, a motion at the annual meeting of the CMA in August 2013 calling for national public consultation “to regard medical aid in dying as appropriate care” was defeated. To its credit, the CMA has recently held four town-hall meetings in four regions of the country to discuss end-of-life healthcare, including palliative care, euthanasia and PAD. As well, Doctors of B.C. (formerly the B.C. Medical Association) issued a policy paper in March advocating that primary healthcare professionals should discuss end-of-life goals with patients on an ongoing basis and encourage them to complete advance care directives in consultation with their families. The report also suggests that a copy of advanced care plans, which should be updated as changes in life goals and medical conditions warrant, should be filed with other medical records so that everybody (and that includes family as well as medical personnel) involved in a patient’s care knows his or her wishes.
We agree that physicians must be consulted on any proposed legislation that sanctions PAD and euthanasia and their concerns must be addressed. But there is no time for foot-dragging. The Supreme Court will hear this issue in the fall and many experts expect it to overturn the present law, as it did with abortion back in 1988, creating the legal vacuum and the uneven access issues that exist to this day.
Canadians should raise these end-of-life issues with their political candidates in the next federal and provincial elections. We must hear them articulate how they would vote on any new legislation around improved access to palliative care and the option of medically assisted dying. We must not let politicians hide behind a 20-year-old Supreme Court Case ruling, as the Harper government has done, or avoid a public stand, as Liberal leader Justin Trudeau did when his party voted to adopt a pro-assisted dying policy last winter.
We also look forward to a policy shift among medical organizations that supports patient autonomy and choice at the end of life. We call on individual physicians and politicians to educate themselves on the wealth of literature on the experience with PAD in other countries and to advocate for the optimization of palliative care for all Canadians, and the option of a self-determined, peaceful, assisted death for the exceptional cases such as Gloria Taylor and Donald Low.
Advanced Care Directive
People who anticipate a situation in which they may not be able to make healthcare decisions for themselves, can complete an advanced care directive setting out their end of life wishes. This may include a Do Not Resuscitate Order. The directive usually includes two parts: a living will stating the patient’s wishes and a separate document naming a power of attorney for health charged with making medical decisions on the patient’s behalf. A copy of the directive, which can be modified as a person’s life goals change, is often filed with the patient’s primary health care physician.
The word palliative comes from palliare in Latin, meaning to cloak or shield. It refers to a patient-centred multi-disciplinary approach to healthcare that focuses on relieving physical and psychological suffering rather than aggressively treating the causes of a chronic or terminal disease. Unlike hospice care, which primarily occurs at end of life, palliative care is appropriate for all patients, no matter the nature or stage of their disease.
Hospice comes from hospes in Latin, a term referring to both guests and hosts. Hospices, as places to house and care for the dying, date back to the Crusades. They flourished in the Middle Ages, but began to decline with the dispersal of religious orders during the Reformation. The modern hospice movement, is either a designated place (especially as pioneered by Dame Cecily Saunders in England in the 1960s) including a special ward in a hospital, or a service, delivered to terminally ill patients in their homes. In either case, healthcare professionals, including palliative care doctors and nurses, social workers and volunteers care for the physical, emotional and psychological needs of the dying and their families.
Continuous Palliative Sedation
Doctors can try to alleviate pain, agitation or restlessness in patients who are very close to death by giving them a continuous infusion of a sedative such as midazolam, either intravenously or subcutaneously. The patient may be awakened from time to time to assess whether symptoms are being controlled. The goal is to control symptoms even if the process may shorten life, especially for patients for whom nutrition and hydration have been withdrawn.
Physician Assisted Death
There are two major forms. indirect and direct. In indirect PAD, an eligible patient requests a prescription for lethal drugs from a physician and then ingests it according to prescribed conditions. In direct PAD (euthanasia) a doctor administers a lethal injection to a qualifying patient. Both forms of PAD are regulated under legally sanctioned circumstances. The criteria for eligibility and the extent of PAD vary from one jurisdiction to another. For example: Oregon only allows indirect PAD for terminally ill patients who are of sound mind and legal age; Switzerland allows indirect PAD for foreigners; Quebec will offer indirect and direct PAD, to patients of full age and sound mind who are at the end of life and suffering from an ”incurable serious illness“ or ”constant and unbearable physical or psychological pain.” The Netherlands and Belgium primarily offer direct PAD and extend it beyond terminally ill adults and people suffering from intractable or psychological suffering to include terminally ill children under specific circumstances.
About the Author
Maureen Taylor, BA, BHSc, Sunnybrook Health Sciences Centre, Toronto ON
Sandra Martin, Former Features Writer, Globe and Mail Author, Working the Deadbeat: 50 Lives that Changed Canada, and a forthcoming book on End-of-Life issues
Canadian Hospice Palliative Care Association. 2013. Hospice Palliative Care in Canada Fact Sheet. Ottawa, ON: Canadian Hospice Palliative Care Association. Retrieved September 10, 2014. <http:// www.chpca.net/projects-and-advocacy/hpcfirst.aspx>.
Cancer View Canada. 2013. In Memory of Don Low. Retrieved September 10, 2014. <http://www.youtube. com/watch?v=q3jgSkxV1rw>.
CTV News. 2013. W5: The Final Word. Retrieved September 10, 2014. <http://www.ctvnews.ca/ video?binId=1.811589>.
Downar, J., T.M. Bailey, J. Kagan and S.L. Librach. 2014. “Physician-Assisted Death: Time to Move Beyond Yes or No.” Canadian Medical Association Journal 186(8): 567-68..
Environics. 2013. Focus Canada, 2013: Canadian Public Opinion on Assisted Suicide. Retrieved September 20, 2013. <http://www.environicsinstitute.org/institute-projects/completed-projects/focus-canada-2013>.
Hamilton, G. 2013. ”Suicide with the Approval of Society’: Belgian Activist Warns of Slippery Slope as Euthanasia Becomes ‘Normal’.” National Post. November24. Retrieved September 20, 2014. <http:// news.nationalpost.com/2013/11/24/suicide-with-the-approval-of-society-belgian-activist-warns-of-slippery-slope-as-euthanasia-becomes-normal>.
Lau, F. and V. Menec. 2007. Health Care Use at the End of Life in Western Canada. Ottawa, ON: Author. Retrieved September 10, 2014. <https://secure.cihi.ca/ estore/productSeries.htm?locale=en&pc=PCC368>.
Martin, S. 2013. “Right to Die Debate Resurfaces as Canadian Ends Her Life in Zurich.” The Globe and Mail April 25. Retrieved September 10, 2014. <http:// www.theglobeandmail.com/news/national/right-to-die-debate-resurfaces-as-canadian-ends-her-life-in-zurich/article11540799/>.
Ménard, J.P. et al. 2013. Mourir Dans la Dignité - Rapport du Comité Ménard sur la Mise en Oeuvre Juridique des Recommandations de la Commission Special. Quebec City, QB: Author. Retrieved September 10, 2013. <www.assnxat.qc.ca/Media/Process. aspx?MediaId=ANQ.Vigie>.
Okie, S. 2005. ”Physician-Assisted Suicide--Oregon and Beyond.” New England Journal of Medicine 352(16): 1627-30. doi: 10.1056/NEJMp058004
Oregon Public Health. 2013. Oregon’s Death with Dignity Act – 2013. Portland, OR: Oregon Public Health. Retrieved September 10, 2014. <public.health. oregon.gov/.../DeathwithDignityAct/Documents/ year16.pdf>.
Parikh, R.B., R.A. Kirch, T.J. Smith and J.S. Temel. 2013. ”Early Specialty Palliative Care -- Translating Data in Oncology into Practice.” New England Journal of Medicine 369(24): 2347-51. doi: 10.1056/ NEJMsb1305469.
Picard, A. 2014. “Why Palliative Care Matters.” Globe and Mail. February 23. Retrieved September 10, 2014. <http://www.theglobeandmail.com/life/health-and-fitness/health/making-the-case-for-dying-with-dignity-in-palliative-care/article17009980>.
Quill, T.E. 2007. ”Legal Regulation of Physician- Assisted Death -- The Latest Report Cards.” New England Journal of Medicine 356(19): 1911-13. doi: 10.1056/NEJMp078061.
Rietjens, J.A., P.J. van der Maas, B.D. Onwuteaka- Philipsen, J.J. van Delden and A. van der Heide. 2009. ”Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?” Journal of Bioethical Inquiry 6(3): 271-83. doi: 10.1007/s11673-009-9172-3.
Steck, N., M. Egger, M. Maessen, T. Reisch and M. Zwahlen. 2013. ”Euthanasia and Assisted Suicide in Selected European Countries and US States: Systematic Literature Review.” Medical Care 51(10): 938-44. doi: 10.1097/MLR.0b013e3182a0f427.
Sandeen, P.J.A. 2013. Public Opinion and the Oregon Death With Dignity Act. Doctoral thesis. Portland State University. Retrieved September 20, 2014. <http://pdxscholar.library.pdx.edu/open_access_ etds/1015/>.