The palliative care movement developed in response to concerns that care at the end of life had been badly done in the midst of the acute care and technologic advances of 20th-century medicine. The need for special attention to end-of-life issues emerged not because of modern medicine’s failures, but from its successes. Phenomenal advances in medical science and technology during the 20th century increased fears of dying and loss of control to a sterile and terrifying technology at the end of life. We had become not just a death-denying but a death-defying society, with an almost limitless possibility of medical benefit where something more could always be done. Those same technologies that can save life can also prolong dying.
Palliative care, with its goals of providing better medical care for pain and symptom control and attending more appropriately to the personal, emotional, and spiritual issues at the end of life, has become an important component of health care in most developed nations. Despite significant challenges to the recognition of the limits of medicine to cure and to the acknowledgment of dying, serious issues of access to high-quality palliative care, and the need for research in the difficult symptoms at the end of life, palliative care has made significant improvements in the care of the dying. Despite these advances, a renewed interest in the “right to die” through legalizing assisted death (AD)—euthanasia and physician-assisted suicide (PAS)—has emerged. In order to understand this interest and to respond appropriately, palliative care practitioners and supporters need to reflect on the context of death and dying today as well as the evolution of medical decision making.
Changes in where and how we die in developed nations have been profound. Historically, death was common, normal, and quick. The elderly died of pneumonia, “the old man’s friend,” and death occurred at home. Today, death increasingly comes in hospitals for individuals who are still undergoing aggressive treatment directed at cure. Our institutions are structured for the old way of dying, where the doctor is central, the priest and family peripheral. It has been suggested that we need a new art of dying because whereas in earlier times many worried about death coming too early, many of us now worry that death will come too late. Today, because of the almost endless possibilities of modern technology, we need to reflect carefully on how we would want to use technology at our end. We even have to think of these things in advance of our dying in case we cannot express our wishes. Dying, previously seen as a natural matter of fate or personal faith, is seen now as a matter of personal choice. Requests for assisted death can be seen as an extension of modern bioethics with its centrality of respect for patient autonomy in medical decision making. This includes the competent patient’s right to refuse care and the development of advance directives as a mechanism of promoting the patient’s autonomy when the patient is incompetent. From an ethical perspective, a major shift occurs with movement from the right to refuse treatments considered nonbeneficial or burdensome by the patient to the right to assistance in death.
There has been a long-standing prohibition in society and in Western medicine against the intentional ending of life. Legal changes in the last decades in some jurisdictions have fueled the debate. In Europe, after a long series of judicial decisions, the Netherlands formally legalized both euthanasia and PAS in 2002. Belgium has legalized PAS; Switzerland has legalized AD and so allows people other than physicians to end life; Luxembourg legalized both euthanasia and PAS in 2008. Northern Australia adopted AD legislation in the late 1990s, but it was rescinded; Southern Australia rejected narrowly AD legislation in late 2009. In North America, the state of Oregon legalized PAS by lethal prescription in 1997; Washington state approved the same in 2009, and Montana legalized AD by judicial fiat. State initiatives are constantly proposing various bills. Many other jurisdictions, including the United Kingdom and Canada, are actively debating PAS. Clearly there has been a major shift in the traditional prohibition in many jurisdictions.
Although this shifting context presents fundamental ethical and moral issues for societies and medicine, it poses some urgent and very particular questions to the palliative care communities. Changes in legal and social policy surrounding assisted death will have profound effects on the practice of palliative care and on individual palliative care practitioners. It is crucial for palliative care providers to understand the issues and to reflect on their position with regard to PAS and euthanasia. With the renewed interest in the legalization of PAS, those committed to palliative care at the end of life face some crucially important questions:
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Is the renewed interest in euthanasia and PAS a consequence of the failure of palliative care to improve end-of-life care?
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Is physician-assisted death by euthanasia or assisted suicide an essential tool of last resort in palliative care?
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Or is physician-assisted death inherently contradictory to the philosophy and goals of palliative care?
Any approach to these questions requires reflection on the goals of palliative care, an understanding of the philosophical arguments supporting and rejecting assisted death, and knowledge of the actual reasons for requests for assisted death and the experience of palliative care practitioners where such practices have been legalized. These questions will require individual responses from clinicians when requests for assistance in dying are made and communal responses from palliative care communities after careful reflection on the implications of PAS and euthanasia on their commitments to the dying. Fortunately, we now have some empirical information from palliative care experience to assist in deliberation on these crucially important questions.
Philosophy and Goals of Palliative Care
Palliative care emerged in the United Kingdom, the United States, and Canada during the 1960s. With the enormous scientific and technologic advances of the 1960s and early 1970s, critics began to warn of the medicalization of dying (e.g., use of the portable ventilator, renal dialysis, and cardiopulmonary resuscitation) and feared these interventions could lead to a loss of the capacity to accept death and dying as normal, a rejection of the importance of personal and family care at the end of life, a disregard for traditional religious and cultural rituals surrounding death and dying, and medical control of the dying person conceptualized as a patient until the end.
A concern for fostering the dignity of dying persons and a commitment to restoring care of the dying as a proper goal of medicine was the inspiration for the founders of the palliative care movement. The vision of Dame Cecily Saunders was actualized with the founding of St. Christopher’s Hospice in the United Kingdom in 1967. The term palliative care describes the parallel development of medical expertise in end-of-life care. These movements demonstrated renewed commitment to the care of the dying and to improving pain and symptom control as soon as possible in the course of any chronic, ultimately fatal illness.
These approaches stress the multifaceted, multidimensional nature of the experience of living with an acknowledged time-limiting illness and the priority of working as a team to achieve the relief of suffering and the enhancement of the last days of life. Supporting the patient, family, and loved ones as a unit became a hallmark of palliative care. The sense of medical abandonment of the dying, seen as a failure of medicine, was replaced by a return to the traditional medical goal of care for the dying. The idea of a good death has been central to palliative care. A good death has been described as one that is pain free, where dying is acknowledged and preferably occurs at home in the presence of family and friends, with the patient aware and alert as long as possible so the unresolved business of life can be accomplished.
The underlying norms and values of palliative care have been articulated by the World Health Organization (WHO) and the European Association for Palliative Care (EAPC) among others. WHO’s definition states that palliative care “affirms life and regards dying as a normal process…. Intends neither to hasten nor postpone death”. EAPC affirms the WHO definition and has concluded that “the provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care”. Generally then, the palliative care community has been opposed to practices of AD ; however, a small minority appear open to such legislation and see good palliative care as the standard, with access to physician-assisted death as a “last resort”. For palliative care this is not just another debate about differences of opinion in pluralistic societies. It represents a profoundly important set of questions regarding the philosophy, goals, and practices of palliative care.
Language, Rhetoric, and Definitions
Many different terms and concepts are used in the general societal debates about euthanasia and PAS. Much of the confusion surrounding these issues has arisen because of a lack of clarity regarding the issues and concepts. This is not surprising because each term is related to a profoundly value-laden set of concepts and practices. Public opinion polls show varying degrees of support for the right to assistance in death in the face of unrelieved pain and suffering. All these polls demonstrate confusion regarding the right to refuse interventions, the role of palliative care, and the current state of pain and symptom control.
Palliative care practitioners need to be clear in their understanding of the various important terms and concepts involved in the practice of palliative care. There is considerable confusion regarding palliative care itself. First and foremost for palliative care is the confusing use of “assistance in dying” language in the debates. Palliative care at end of life is committed to assistance in the process of dying. Euthanasia and AS are actions aimed at assistance in achieving death.
The right of a competent patient to refuse medical interventions, based on his or her judgment of the benefits and burdens, is central to modern practice. Termination of life-sustaining treatments generally refers to the withholding or withdrawing of life-sustaining treatment at the request of a competent patient or that patient’s representative, a proxy or surrogate. The broad consensus is that physicians are not only allowed to honor these requests, they are also legally and ethically bound to do so.
The two practices that are the focus of legislation are PAS and euthanasia. PAS involves the physician’s providing the means for a patient to end life, usually by prescribing a lethal dose of a medication or furnishing information to enable the patient to perform the life-ending act. It requires a suicide—that is, the patient performs the act that causes death. In contrast to the agreement regarding the termination of treatment, there is no consensus on PAS. Most health care professional organizations oppose PAS on ethical grounds, and most jurisdictions have clear legal prohibitions. The ongoing debates question whether these prohibitions should be lifted.
In contrast to PAS, euthanasia involves the physician’s performing an intervention, usually a lethal injection, which ends the patient’s life. Euthanasia is categorized as voluntary, involuntary, and nonvoluntary. Voluntary euthanasia is requested by the patient; involuntary euthanasia is performed despite the objections of the patient; and nonvoluntary euthanasia occurs when the patient’s decision has not been sought or, as in the case of infants and young children, there is a lack of decisional capacity.
Palliative care practitioners have developed intermediate practices such as aggressive pain management and terminal sedation that, for some, challenge the traditional distinction between forgoing treatment and actively assisting death.
Most observers would be able to distinguish classic cases of forgoing treatment (say, by withdrawing artificial ventilation) from assisting suicide (say, by providing a lethal prescription). The claim, however, is that it would be harder to distinguish two practices from assisted suicide or euthanasia: first, pain relief that may suppress respiration and hasten death, and second, sedation combined with withdrawal of artificial nutrition.
There have been concerns that aggressive pain relief with opioids may hasten death. Even if this were accurate, the use of aggressive pain relief has been considered ethically acceptable when there is no less dangerous way to provide pain relief, the competent patient is informed of the risks and benefits and gives consent, and the physician’s intent is therapeutic, not to hasten death. The empirical data are increasingly clear about effects. Competent palliative care practice utilizing opioids for pain control does not hasten death.
Terminal sedation raises other issues. Definitions differ, but the term usually means sedating a patient to unconsciousness while withholding artificial nutrition. If sedation to loss of consciousness is necessary to provide good pain or symptom relief and the patient agrees to it and to the withdrawal of artificial nutrition, this is considered acceptable practice. The primary goal of terminal sedation is effective relief of refractory symptoms. However, terminal sedation is used judiciously because it results in the loss of capacity for interaction, the other crucial goal of end-of-life care.
These two standard practices of palliative care have been justified by the ethical principle of double effect, meaning the following: The act must be good or morally neutral; only the good effect is intended, whereas the bad effect is merely foreseen; the bad effect must not be the means to the good effect; and the good effect must outweigh the bad. The principle is not a simple mathematical formula but rather requires judgment regarding which effects are good or bad. Here, the intention of the doctor (to relieve pain and suffering, not to end the life of the patient) is crucially important.
Arguments for and against Euthanasia and Physician-Assisted Suicide
It is important for palliative care physicians to understand, at least in a general way, the reasons put forward in support of PAS and euthanasia and the long-standing arguments against allowing physicians to end life intentionally. This is an area of deep and highly contested issues and values.
For
Arguments in favor of PAS include the principle of respect for the autonomy of competent persons, the duty of physicians to care for patients who are in pain and suffering, and rejection of the distinctions considered morally and ethically relevant in the current practice of palliative care, such as that between killing and letting someone die. Proponents believe that the practices can be regulated, and regulation is dealt with in the next section.
The central argument for PAS is based on patients’ rights and on respect for autonomy in modern society and health care in particular. This would extend the right to make decisions to include the right to determine the course of one’s own dying. Under this argument, no competent person should have to endure what they judge to be unbearable pain, suffering, loss of dignity, or loss of quality of life. The right is based on principles of dignity, respect, and autonomous choice. It is seen as a control on the unrestrained use of technology at the end of life. This reasoning rests on a conception of autonomy as “negative liberty”—that is, the right to act in accordance with one’s beliefs and choices without interference as long that behavior does not harm others. Proponents of PAS argue that this right should include an individual’s control over the timing and circumstances of death, up to and including assistance in dying. In this understanding, PAS is a personal decision, an application of the right to self-determination that should be free from paternalistic interference from any source. It is seen as a type of rational suicide.
Some arguments for PAS are based on the claim that physicians have a duty to provide assistance in dying if the patient’s suffering cannot be relieved by standard care. This argument is based on understanding PAS as a compassionate response to medical failure. Others go farther and argue that a physician’s refusal of requests for AD by competent, terminally ill patients constitutes a kind of abandonment. These proponents argue that the traditional prohibitions of the Hippocratic Oath—against abortion and surgery, for example—have been lifted in response to changing social situations. In this understanding, the Hippocratic tradition requires a physician to alleviate suffering, and this can include PAS if that is the only solution. Moreover, PAS is distinct from euthanasia in that it does not involve the ending of life by a physician; the person takes his or her own life, a suicide.
Some argue that no principled difference exists between acceptable practices such as terminating life-sustaining treatment and aggressive pain control (omission) and euthanasia and PAS (commission) and also no meaningful distinction between letting die and killing.
Against
The main arguments against PAS and euthanasia understand these life-ending procedures as contradictory to the physician’s role so rejection of such procedures is crucial to the integrity of medicine; these procedures do not promote patient autonomy but further medicalize both human suffering (in contrast to pain and other physical symptoms) and dying; the practice is not necessary for efficient and compassionate care at the end of life and allowing the procedures will lead to error and abuse that cannot be regulated.
Although there were early debates about the practice, the Hippocratic prohibition against a physician’s intentional ending of life is long standing. Today, with notable exceptions, most professional organizations (e.g., the American Medical Association and the Canadian Medical Association) hold that euthanasia and PAS are incompatible with the physician’s role as healer. Trust is central in the patient–doctor relationship, and it requires a clear commitment to restore and promote life. Violations of this trust are possible when death is a legitimate option. Some believe that the “false promise of beneficent killing” unalterably changes the patient–doctor relationship.
A physician must respect a competent patient’s right to refuse potentially lifesaving treatment. However, this does not translate into an obligation to end life, even at the patient’s request. In addition, a physician who is caring for a patient at the end of life should provide adequate and effective pain and symptom control. Opponents argue that PAS and euthanasia do not promote patient autonomy but give more power and authority to the physician and medicalize suicide.
Assisted death has also been described as “self-determination run amok”. Respect for autonomy is important, but other interests and values are at stake. Even if voluntary euthanasia and PAS were accepted as instruments of personal autonomy, limits should be set for the sake of other goods. A paradox emerges here. PAS is seen as a radically individual manifestation of autonomy, but it requires the agreement and participation of physicians and society. As long as PAS requires the assistance of others, it cannot be conceived of as solely an extension of individual autonomy. PAS is an impediment to an individual’s autonomy rather than an extension of it. It medicalizes an act, a practice, and the social ethos of death and suicide. Ideally, the patient is not abandoned, so the physician must be present. PAS becomes a medical act.
Opponents argue that euthanasia and PAS are not needed to provide good end-of-life care. Much of the public support for these practices is based on a belief that they are necessary in some circumstances of intractable pain, but advances in palliative care have made such circumstances extremely rare. Moreover, as long as doctors can provide aggressive pain relief, including terminal sedation if necessary, intractable pain is not a necessary or usual experience at the end of life.
Finally, opponents have grave concerns about error and abuse of PAS and euthanasia. Recognizing the prevalence of depression in the chronically and terminally ill and the tendency for doctors to underestimate depression, substantive concerns exist regarding the patient’s competence to request PAS and euthanasia. Depression and hopelessness are important because treatment, if provided, could alter the request for PAS or euthanasia. Opponents have significant concerns for vulnerable populations, such as the disabled and chronically ill, who already experience subtle pressures to accept limits. There are special concerns for discrimination against women and children, who can be perceived as burdensome. Because health care costs are a concern for many, especially those with no insurance coverage, these concerns about pressures and limits are real. Although proponents of PAS and euthanasia base their arguments on the free choice of competent adults to make decisions regarding their dying, there is grave concern for the “slippery slope” extension to practices involving others who have not made or who cannot make such choices.
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