Gail C Walker. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.
Each of us will eventually arrive at the end of a unique life and die an individual death. The natural boundaries of that life are marked by the events of birth and death in a most personal and private way. The symbolic significance that an individual attaches to death can affect many aspects of the way that person dies, including decisions regarding when and under what circumstances he or she dies, from what cause or reason, whether the decisions made by and for the individual are harmonious with the philosophical and ethical values that have defined important dimensions of that person’s life, and how the individual and his or her loved ones evaluate the quality of the death experience. As Feifel (1990) points out, “Recognition of personal mortality is a major entryway to self-knowledge.” Each person lives in a social context, however, and individual freedom in choices about life and death is limited by prevailing public policy, standard medical procedures and practices, and social conceptualizations about what constitutes “the common good.” Society views individual decisions about life and death as affecting the whole community, and social policies within a democratic tradition often attempt to balance considerations of individual autonomy with respect for the rights and perspectives of others. Public policy should reflect more than the findings of opinion polls, financial expediency, and assertions of individual rights, but because there is currently no consensus as to what constitutes the common good in the area of death-related issues, it is difficult to determine what courses of action are best for both individuals and the larger society.
The right to die, physician-assisted suicide, hastened death services for terminally ill and nonterminally ill patients, and medical euthanasia have all recently been topics of discussion in social, medical, and legal forums. Surely there are few questions of equal importance: Under what circumstances is it appropriate to kill a fellow human being? A teaching story in the Bible says:
Now Cain said to his brother Abel, “Let’s go out to the field.” And while they were in the field, Cain attacked his brother Abel and killed him. Then the Lord said to Cain, “Where is your brother Abel?” “I don’t know,” he replied. “Am I my brother’s keeper?” (Genesis 4:8-10)
There have been many answers to Cain’s question over the centuries. Although Cain killed Abel in anger and was punished with exile, societies have long recognized legitimate exceptions to the primary rule against killing. These have included killing in the time of war, in self-defense, and in the defense of others. Setting aside the circumstances of self-defense, war, and murder motivated by passion and opportunistic greed, the issue of medical euthanasia has focused attention on the legal, moral, and ethical considerations that derive from the essential dilemmas that accompany the technological advances made by modern medicine. The concepts of passive euthanasia, physician-assisted suicide (PAS), and active euthanasia have formed an arena in which scholars and medical professionals have examined the conflicted issues accompanying compassionate care for terminal patients, beneficence and autonomy, patients’ rights to self-determination, comprehensive palliative care, and the limits of palliative care in management of pain and chronic suffering. In the modern era, advances and limitations in life-sustaining medical technologies have fostered an examination of assisted death and killing for merciful reasons.
Discussions of medical euthanasia involve several fundamental philosophical perspectives, which sometimes results in polarized and seemingly irreconcilable points of view for patients, their family members, physicians, and health care staff as well as conflicts in public policy standards and conflicts in general public opinion. As Battin (1995) notes, the central philosophical question in the ethical debate about suicide and its extension into PAS and euthanasia is, “What role may the individual play in his or her own death?”
Issues of paramount importance that have arisen in the shifting social and legal discussions of PAS and euthanasia include concerns about individuals’ understanding of the medical management procedures that may take place during the actual process of dying, the identification and elimination of barriers to compassionate and comprehensive end-of-life care through the provision of palliative care and hospice services, and discussion of terminal patients’ constitutional rights and protections. The pivotal decision is whether a person has a right to life or a right to choose hastened death under certain circumstances.
Vitalism and Relativism
Vitalism is the term typically attached to the idea that life itself is the fundamental value and must always be preserved and protected, regardless of considerations of quality (Fulton and Metress 1995). A corollary perspective is the “sanctity of life” view, which holds that all human life is equally valuable, regardless of quality considerations. In these views, the “right to life” is the fundamental human right upon which all other rights depend.
Public debate has yet to resolve the question of whether individuals have a corresponding “right to die.” Relativism, or the “quality of life” ethic, takes into consideration an individual’s life expectancy, medical prognosis, and level of functioning in activities of daily living as well as the risk and benefit levels of treatment options (Fulton and Metress 1995). Health care professionals must make quality-of-life judgments in order to act in their patients’ interests (Kuhse and Singer 1989). The American emphasis on individualism has reinforced the perspective of relativism in U.S. public policy. Attempting to balance the benefits and burdens of quality-of-life considerations takes social policy onto a slippery slope, as reasonable choices in some circumstances might lead to unreasonable and unethical outcomes in other situations.
The slippery slope paradigm suggests that although society may condone actions that are ethically or morally appropriate in their own right, there is a risk that such actions may lead to other actions that are ethically or morally inappropriate. For instance, would policies that allow suicide under certain situations pave the way for policies that transform the option into an obligation, especially for individuals who are uninsured or underinsured, elderly, or incompetent? The movement to establish legal status for advance directives, living wills, and health care proxies was originally aimed at allowing more patient control of end-of-life decisions, because physicians were doing too much to prolong life and inadvertently also prolonging the process of dying. The possibility of a lingering death produced by high-technology medical intervention created a context in which patients became more receptive to the idea that physicians should be allowed to help them die. Although some people in intolerable health circumstances request hastened death services, others fear the implications of the legalization of medical euthanasia. Some patients now use advance directives to protect themselves from the premature withdrawal of medical treatment as a cost-saving measure by hospitals, health insurance companies, or family members. In an analysis of the coverage of the issue of euthanasia in American magazines from 1896 to 1976, Wallen (1996) clarifies the roots of the modern controversy. Apparently, Wallen notes,
the euthanasia argument shifted its emphasis at mid century from the right to choose and its attendant corollaries to the right to die with its corresponding issues. Underlying this shift is the subliminal acknowledgment that America, through an unwritten contract with techno-medicine, has exchanged its self-determination for the promises of biological restructuring and prolongation of human life. Such a contract denies individual freedom to determine the importance of one’s quality of life versus quantity of life. Americans since 1976 have been searching for ways to recapture their self-determination in the end-of-life decision making process.
Death with Dignity
What does it mean to die with dignity? Thoughtful and compassionate individuals are found on all sides of this debate. Dying with dignity can involve the terminal person’s ability to maintain some control over the manner and timing of death. If health care professionals see the death of the patient only as a medical failure, they may neglect to create the conditions necessary for a “good death.” For many people, a good death involves relief from suffering.
For some people, death with dignity comes through the endurance of suffering, even extraordinary suffering. As Humphry (1992) asks, “Does suffering ennoble? Is suffering a part of life and a preparation for death?” (p. 83). Although some view suffering as having redemptive value or other eventual benefit to the one who suffers, medical pain reduction has immediate benefit to the patient and family. Suffering can be eliminated, managed, or made tolerable through the sophisticated use of pain medications and comfort measures, although a side effect of the administration of increasing levels of pain medications is the suppression of respiration and thus the possibility or probability of ending life. Physicians and health care workers often discuss the implications of the Hippocratic Oath as it applies to their duty to carry out the basic commitment to save life and at the same time respect the moral imperative to prevent suffering, attempting to reduce a moral equation to an acceptable common denominator. A dynamic tension between conflicting understandings of human suffering and competing sources of moral authority has influenced the transformation of public opinion and public policies regarding euthanasia and assisted suicide (Turner 1997).
The essential social, moral, and ethical dilemma is how to find a balance between the advantages derived from modern knowledge and applications of technology within the context of personal autonomy and the right to selfdetermination as guided by personal values about life and death. As Jennings (1991) notes, in the euthanasia debate, the principle of autonomy has been extended into an “assertion of sovereignty over the timing and circumstances” of death and “society’s unwillingness to impose a conception of ‘good’ on individuals whose personal values and conceptions of the good may differ.” Clouser (1991) asserts that general acceptance of a patient’s right to selfdetermination and limited acceptance of the morality and rationality of assisted suicide should not blur the emphasis on palliative care.
In the United States, within the context of a pluralistic cultural environment, a social consensus has evolved that a patient (directly or through a proxy) has the right to refuse life-sustaining treatments. This consensus has promoted the provision of hospice services and palliative care programs to improve individuals’ quality of life during the dying process and has also fueled debates concerning the legalization of PAS and euthanasia. MacDonald (1994) suggests that the emphasis on euthanasia diverts attention from a more fundamental ethical concern, which is the allocation of resources to ensure the provision of excellent palliative care.
The goals of palliative care are to relieve suffering and to improve the quality of an individual’s remaining life. In the palliative medical care of terminal patients, the patients’ autonomous medical instructions and health care proxy decisions guide the process of comprehensive management of pain and determination of appropriate points in the dying process when treatments should be accelerated, withheld, or withdrawn. Palliative care includes the appropriate administration of narcotics, and, if morphine is insufficient to contain the pain, tranquilizers or anesthetics enable the patient to sleep without feeling pain. The acts of palliative care workers respect a patient’s rights to selfdetermination, autonomy, and privacy and are often consistent with the training and social perspective of the practicing physician. Although the determination of appropriate professional, ethical, and legal conduct and clarification of intent can be complex in particular cases, specialists in palliative care generally do not practice PAS or active euthanasia (Foley 1991).
Battin (1991) investigated attitudes toward end-of-life dilemmas in the United States, Holland, and Germany, which all have aging populations; the majority of deaths in all three countries are attributable to deteriorative diseases. In Holland, health care workers can provide voluntary active euthanasia; in Germany, patients have legal access to assisted suicide, often outside of medical settings; and in the United States, the withholding and withdrawing of life-sustaining treatments are legal options. As Battin notes, the AIDS epidemic has underscored the fact that members of younger as well as older generations die of terminal illnesses. As the numbers of individuals dying of AIDS increased, it became clear that existing hospice programs were ill equipped to face the challenge of coping with the increase in demand for their services and with the varieties of distressing symptoms the disease presented for management.
When patients’ pain is managed effectively and hospice services are provided, requests for assisted death are often reduced. Bernhoft (1993) suggests that requests for euthanasia services from terminally ill patients are often the result of treatable depression or the undertreatment of pain and advocates the provision of high-quality care for the terminally ill within a hospice framework, funded through hospice insurance. Byock (1993) asserts that patient requests for assisted suicide services or euthanasia often decrease when patients’ suffering is controlled and patients are reassured that they will not be abandoned in the dying process—two of the central tenets of hospice care. The World Health Organization (1989) has suggested that a physician should not be allowed to consider assisted suicide or euthanasia for a patient until palliative care and pain relief have been addressed.
Even with the provision of opioid analgesia and hospice care, the presence of intractable pain and their poor physical functioning motivate some patients to request PAS or euthanasia (Emanuel et al. 1998). In one study, approximately 33% of patients with multiple sclerosis reported that they had thought about requesting PAS under certain conditions; the factors that they said would motivate them to make such requests included unbearable pain, inability to participate in the activities of daily living that bring them pleasure, knowing that they are causing a financial burden to family members or caregivers, and pronounced emotional distress (Berkman et al. 1999). Logue (1994) notes that some competent patients, and the families of incompetent patients, have clearly rejected palliative care procedures in both hospice and nonhospice settings due to current medical limitations in pain management and symptom control. Foley (1991) acknowledges that current palliative care programs may be insufficient to meet the needs of cancer patients in advanced stages of the disease, but asserts that medical professionals should work on providing competent care for dying patients through high-quality programs for symptom control, management of pain and psychological distress, and improvement of quality of life before examining options to terminate life. Logue suggests that policy makers should consider options beyond passive euthanasia, consistent with patient autonomy and the right to die, that may be medically necessary to alleviate patient suffering.
In a survey that Arena (1999) conducted with a small sample of family members of patients whose dying was prolonged medically, the respondents expressed dissatisfaction with the norms that regulate how we die. They found these norms to be inadequate to meet the needs of the terminally ill, and they suggested that instruction regarding end-of-life care should be included in the basic educational curricula of all health care professionals, especially instruction focused on the improvement of pain management and communication with dying patients and their loved ones. Many scholars and other observers have promoted the notion that health care professionals should give careful consideration to alternative treatment possibilities rooted in palliative care and hospice care, with special emphasis on sharing control over medical decisions with patients and their family members (Task Force on Physician-Assisted Suicide 1995; Uzych 1996). In contrast, Seale and Addington-Hall (1995) examined the results of three surveys of family members and friends of hospice patients and found that, when levels of patient dependency and distress were controlled for, the majority of survivors thought it would have been a better outcome if their loved ones had died earlier. Measures of quality of care, symptom relief, and care in other institutions showed a weak association with euthanasia requests, whereas measures of unmet needs for symptom treatment and residential services were more strongly associated with such requests.
An additional aspect of palliative care is the provision of mental health services to family care providers after a patient’s death; such preventive psychological and social interventions can affect the psychological outcomes for the bereaved. Kelly et al. (1999) examined grief responses among family caregivers following patients’ deaths and found the severity of those responses to be significantly related to preexisting psychological symptoms at the time of referral to palliative home care service; relationship with the patient; reported greater numbers of adverse life events, including previous bereavements and separation experiences; pattern and effectiveness of coping responses; and severity of the patient’s illness. Billings and Kolton (1999) found that the major factors influencing family satisfaction with bereavement care following a family member’s death in a hospital were considerations about respect for the privacy, dignity, and comfort of the patient; effective communication with the family; quality of the emergency ward care; proper attention given to advance directives; and the provision of bereavement support. Of these factors, bereavement support services were most often described as inadequate, with hospital social workers and chaplains unable to contact approximately one-third of the relatives after the death. Smokowski and Wodarski (1996) suggest that medical social workers can fill a unique need by developing and implementing programs aimed at providing comprehensive care for the terminally ill.
The Wish to Die
In a study of cancer patients, Chochinov et al. (1999) found that those who were receiving palliative care reported a relatively stable will to live, although for some patients fluctuations in the will to live were substantial. These researchers note that the “main predictor variables of will to live were depression, anxiety, shortness of breath, and sense of well-being, with the prominence of these variables changing over time” (p. 3). According to Quill (1993), patients may express a wish to die when they suffer from incurable progressive medical illnesses, when they are tired of aggressive medical treatment programs, when they develop unrecognized physical symptoms (or their physical symptoms are undertreated), when they have psychosocial problems, when they experience spiritual crises, when they have clinical depression features, and especially when they have unrelenting and intolerable suffering.
In a study of patients with diagnosed HIV, Breitbart, Rosenfeld, and Passik (1996) found that 63% expressed a preference in favor of legalized PAS and 55% had considered seeking such services when their disease process had become debilitating. Predictor variables in subjects who favored legalization of PAS included high scores on measures of psychological distress, previous experience with the terminal illness of a family member, low participation in religious activities, and perceived low levels of social support. Breitbart et al. found no correlations between endorsement of assisted suicide and pain severity, functional impairment, physical symptoms, or extent of the disease process. However, Rosenfeld et al. (1999) found that attitudes toward hastened death among HIV/AIDS patients were significantly correlated with pain intensity and distress from physical symptoms.
Fins et al. (1999) investigated end-of-life decision making and found that appropriate transitions from life-sustaining treatment to comfort care and palliative services were associated with presence of a health care proxy, “do not resuscitate” orders, and comfort care plans, although 41% of the patients continued to receive antibiotics and 30% continued to have blood drawn, and only 13% of patients on ventilators and 19% on nutrition and hydration opted to request withdrawal of these procedures prior to death. Singer, Martin, and Kelner (1999) surveyed patients about end-of-life care and found that the areas of importance the patients identified were adequate pain and symptom management, the avoidance of prolongation of the dying process, the achievement of control and the balancing of burden, and the strengthening of relationships with loved ones in the available time.
The aims of palliative care are to relieve patient suffering and to improve the quality of remaining life, not to hasten death. However, the provision of pain relief through palliative analgesic administration may simultaneously hasten or cause a patient’s death, and the appropriate ethical choice may be difficult to determine. In some instances, hastened death resulting from the use of palliative analgesia for a terminally ill patient can be not only an ethical outcome but an obligatory one (Cavanaugh 1996). The clinical practice of “slow euthanasia” (Billings and Block 1996)—that is, the practice of using treatment methods that lead to pain management and an eventual comfortable death for the patient—is more acceptable than more overt forms of euthanasia to patients and their family members, to health care professionals and the medical community, and, by extension, to the general public. As Saunders (1989-90) notes:
We are not so poor a society that we cannot afford time, and trouble and money to help people live until they die. We owe it to all those for whom we can kill the pain … to make voluntary [active] euthanasia lawful would be an irresponsible act, hindering help, pressuring the vulnerable, abrogating our true respect and responsibility to the frail and the old, the disabled and the dying.
Gostin (1993) suggests that the euthanasia debate has three levels—the cessation of life-sustaining treatment, patient suicide, and physician-assisted suicide—and advocates that we maintain the ethical and legal distinction between passive and active euthanasia while allowing assisted suicide as an appropriate part of the continuum of end-of-life choices. Bachman, Alcser, Doukas, and Lichtenstein (1996) assert that also appropriate to the debate are concerns about “whether public opinion polls reflect ethical positions, the percentage of physicians who would participate in assisted suicide if it were legal, and the effects of cost-conscious managed health care plans on decisions regarding euthanasia for terminally ill patients.” Wilson and Chochinov (1996) report:
In jurisdictions in which assisted suicide has received legislative recognition, relatively more physicians express a willingness to perform it; where it is currently practiced, the rate of actual participation is very high. This suggests that legislation leads to more participation than before-the-fact surveys may indicate.
Informed Consent and the Patient Self-Determination Act
The principle of “informed consent” means that patients must have information about treatments, including possible side effects, and their own prognoses in order to make decisions concerning their health care that are appropriate to their own situations and their own values and preferences. Under the Patient Self-Determination Act of 1990, health care professionals must provide patients with information on their rights to receive or refuse medical treatments, to formulate advance directives, to appoint health care proxies, to execute living wills, and to select levels of medical intervention, especially in regard to cardiopulmonary resuscitation, mechanical breathing, artificial nutrition and hydration, major surgery, kidney dialysis, chemotherapy, minor surgery, invasive diagnostic tests, the use of blood or blood products, antibiotics, simple diagnostic tests, and pain medications.
A patient’s health care proxy is a legally designated agent who is empowered to make medical decisions on behalf of the patient if the patient should become incompetent or otherwise unable to exercise his or her rights to autonomy and self-determination and to give or refuse informed consent. The health care proxy is obligated to follow the patient’s wishes as expressed through living wills, medical directives, or other instructions; he or she must act consistently in the patient’s best interests, but may not pursue or promote any illegal course of action.
“It’s Over, Debbie”: A Case of Involuntary Euthanasia
In 1988, a brief anonymous report in the Journal of the American Medical Association focused the controversy over active euthanasia on the issue of informed consent. The journal article was written by a physician who related how he was called to the hospital room of a 20-year-old woman who was apparently dying of ovarian cancer; the patient was attached to an IV and receiving nasal oxygen. The alcohol drip sedation the woman was receiving had caused her to vomit profusely, and she reportedly said to the doctor, “Let’s get this over with.” The physician, who wrote, “I could not give her health, but I could give her rest,” instructed a nurse to prepare a syringe of morphine sulfate, which he then injected into the patient’s IV. Within 4 minutes, the patient ceased breathing (“It’s Over” 1988).
The medical community’s response to this article was immediate and varied. The controversy ranged from the nature of this particular case (in which the act was both surreptitious and involuntary, suggesting the possibility of a criminal charge of felony premeditated murder) to the larger issue of whether there is an appropriate role for physicians in direct active euthanasia. In a small follow-up study, Anderson and Caddell (1993) surveyed oncology medical professionals and found that 60% indicated they agreed with the anonymous physician’s actions and at least some supported physician-assisted euthanasia.
Jack Kevorkian: Assisted Suicide and Active Euthanasia
In January 1990, Dr. Jack Kevorkian sent a letter to the Michigan Department of Licensing and Regulation in which he stated, “I have begun a unique medical practice: to assist in the rational suicide of patients who are suffering from eminently [sic] terminal illness, severely crippling or painful disease or deformity or trauma, and who, on their own, have decided that the quality of life for them has degenerated to intolerable levels” (quoted in “The People of the State of Michigan” 1991:110). In June 1990, Kevorkian assisted in the suicide of Janet Adkins, 54, who had been diagnosed as being in the early stages of Alzheimer’s disease (Gibbs 1990). Murder charges were brought against Kevorkian for Adkins’s death, but the charges were dismissed in December 1990. By late 1998, Kevorkian admitted that he had participated in approximately 130 deaths (Goodman 1998). Many questions arose about Kevorkian’s activities. Although he was tried four times on criminal charges, he was not found guilty of criminal conduct related to his assisted suicide activities. However, Michigan authorities did revoke his medical license.
Those who criticized Kevorkian’s actions had moral and religious objections to his ending the lives of others, to his confusing the role of physician as healer with the role of agent of assisted death (Kevorkian was a pathologist), and to the manner in which he conducted his assisted death services. Many complained that he provided his services without obtaining adequate medical information on his clients, without conducting sufficient consultations with his clients, and without ensuring that sufficient safeguards were in place to protect his clients. He was criticized especially for failing to suggest to his clients alternate methods for the management of physical pain. In addition, Kevorkian’s clients were predominantly females who fit the general psychological profile of suicide attempters, and only 28.3% of them were terminally ill (Kaplan, Lachenmeier, et al. 1999-2000; Kaplan, O’Dell, et al. 1999-2000). Other criticisms of Kevorkian’s approach to assisted death included factors related to his personality, such as his delight in being the subject of publicity, his “Dr. Death” persona, and his failure to follow his own purported guidelines and standards in carrying out assisted deaths (these consisted of prior client consultations with psychiatric and pain specialists, a 24-hour waiting period, the provision of extensive patient counseling, and the immediate halt to all assisted death actions at any sign of patient ambivalence).
On September 17, 1998, Kevorkian videotaped his own actions as he provided euthanasia services by lethal injection to Thomas Youk, who suffered with advanced amyotrophic lateral sclerosis (Lou Gehrig’s disease). The tape was subsequently aired on the CBS television newsmagazine 60 Minutes, and soon after, Kevorkian was charged with first-degree murder and criminal assisted suicide. The assisted suicide charge was subsequently dropped, and the testimony of Youk’s family was irrelevant to the remaining murder charge. During the trial in March 1999, Kevorkian acted as his own lawyer and neglected to call any witnesses in his own defense. The jury found him guilty of second-degree murder and delivery of a controlled substance, and he was sentenced to a prison term of 10 to 25 years for the murder conviction and a concurrent 3 to 7 years for delivery of a controlled substance, with eligibility for parole in less than 7 years. At Kevorkian’s sentencing, Judge Jessica Cooper of Oakland County, Michigan, stated:
This trial was not about the political or moral correctness of euthanasia. It was about you, sir. It was about lawlessness. It was about disrespect for a society that exists and flourishes because of the strength of the legal system. No one, sir, is above the law. No one. You were on bond to another judge when you committed this offense; you were not licensed to practice medicine when you committed this offense, and you hadn’t been licensed for eight years. And you had the audacity to go on national television, show the world what you did and dare the legal system to stop you. Well, sir, consider yourself stopped. (Quoted in “Judge Assails ‘Lawlessness'” 1999)
Timothy Quill: Physician-Assisted Suicide
In an article published in the New England Journal of Medicine in 1991, Dr. Timothy Quill reported his participation in the assisted suicide of a 45-year-old patient, “Diane,” who suffered from acute myelomonocytic leukemia. Diane had refused traditional treatment protocols and entered a hospice program, conveying that she wanted to live fully and well in her remaining time and then end her life with dignity in the least painful way possible. After conferring with the Hemlock Society, she requested a prescription for barbiturates under the guise of complaints of insomnia. After several months had passed and her disease had progressed, she said her good-byes to family, friends, and physician. Two days later, her husband announced that Diane was dead. A Rochester, New York, grand jury reviewed the case and determined that no criminal conduct had occurred. Quill was charged with and subsequently cleared of medical misconduct by the New York State Medical Board. In his own defense, Quill (1993) has suggested that physicians should provide terminal patients more than pain management prescriptions and referrals to hospice services. In his view, physicians should accept the responsibility of providing continuing care to their terminal patients as they face the dying trajectory.
Criticisms of Quill’s actions in the case of Diane focused on several issues, including whether voluntary euthanasia is appropriate care for the terminally ill (Levy 1991), whether Diane’s statistical one-in-four chance of survival was sufficiently low for her physician to go along with her wish to forgo the uncertainties of treatment (Ross 1991), whether society has shown a predisposition to accept death as an outcome rather than develop more effective systems for end-of-life care (Lynn and Teno 1991), and whether cases such as Diane’s represent the progressive slide of social values down the slippery slope of medical expediency (O’Conner 1991).
Attitudes about the Right to Die
In 1990, the Times Mirror Center for the People and the Press published the results of a national poll regarding public attitudes about the right to die. In his review of this poll, Kastenbaum (1998) notes that a significant majority of the respondents agreed that there are circumstances in which a person should be allowed to die, that people do have the right to make their own decisions about lifesustaining treatment, and that stopping treatment is a reasonable course of action in cases where individuals are suffering great physical pain or are unable to function in activities of daily living because of an incurable disease. The Americans surveyed strongly approved of right-to-die legislation that allows patients or their proxies to make decisions about the withdrawal or withholding of medical treatment. A slight majority agreed that a person has the moral right to end his or her own life if he or she is afflicted with an incurable disease or is suffering great pain with no hope of improvement. However, a strong majority disagreed that a person has the moral right to end his or her own life if he or she has become a burden to family or if life itself has become a burden. In general, the results of this poll suggest that Americans consider the specific circumstances of each case to be of paramount importance in the determination of an individual’s right to die.
In comparing the results of a survey of health care workers concerning their attitudes about the right-to-die issue with national poll results, I found that, like the general public, the majority of health care workers endorse the concept of an individual’s right to self-determination (Walker 1997). Health care staff were significantly more likely than members of the general public to agree that there are circumstances in which a person should be allowed to die and that people should have the right to make their own decisions about receiving life-sustaining treatment; that they themselves would ask a physician to stop treatment if they were in great pain or unable to function; that they approve of right-to-die legislation that allows medical treatment to be withdrawn or withheld, with patient consent; and that a person has the moral right to end his or her own life if afflicted with an incurable disease. However, a significantly smaller proportion of health care workers, compared with the general public, agreed that an individual is sometimes justified in killing his or her spouse because that person is suffering great pain from a terminal illness or that a person has the moral right to end his or her own life if he or she has become a burden on the family or if life has become a burden.
Suicidal ideation and behavior often result from an individual’s feelings of despair, depression, and hopelessness. If a desire for suicide derives from irrational motives, intervention in the suicidal process seems morally justifiable. But the question arises: Can suicide be a rational action when the alternative is unrelenting physical pain accompanying terminal illness? If so, rational suicide in the form of euthanasia may be considered a morally appropriate and legitimate exercise of an individual’s right to self-determination.
In assisted suicide, although the individual’s immediate cause of death results from his or her own actions, the individual has obtained the means for taking those actions with the cooperation of another person. The individual acts as the agent of his or her own death, which implies that the action involves the individual’s consent, the absence of coercion, and the individual’s voluntary assumption of the moral and legal consequences. It is not illegal to commit suicide in any jurisdiction of the United States; however, assisting in the death of another person is illegal, and a person who does so may be charged with accessory to suicide, homicide, or murder.
People’s assessments of the moral appropriateness of suicide may depend on the religious and cultural context of the action. Today, most of the world’s organized religions oppose or forbid suicide based on the extension of the belief that all life comes from God. From this viewpoint, the individual has temporary custody of the “divine spark” of life and is under a moral imperative to cherish and care for the gift. The Bible says: “Don’t you know that you yourselves are God’s temple and that God’s Spirit lives in you? If anyone destroys God’s temple, God will destroy him; for God’s temple is sacred, and you are that temple” (First Corinthians 3:16-17). The Roman Catholic Church’s Declaration on Euthanasia states that “intentionally causing one’s own death, or suicide, is … equally as wrong as murder … a rejection of God’s sovereignty and loving plan” (Sacred Congregation for the Doctrine of the Faith 1982:512; quoted in Corr, Nabe, and Corr 2000:480). According to Feldman and Rosner (1984), Judaism teaches that “human life [should] be treated as an end in itself … Even individual autonomy is secondary to the sanctity of human life and therefore, a patient is not permitted to end his or her life” (p. 106; quoted in Corr et al. 2000:479). The Koran states, “Do not destroy yourselves” (4:29). In Hinduism and Buddhism, suicide is condemned because “the evil encompasses the karmic consequences of the act which impede the progress of liberation” (Crawford 1995:68; quoted in Corr et al. 2000:480).
In euthanasia, death is caused not directly by the individual but by the actions of another, an agent with beneficent intent to provide the individual with a “good death.” Euthanasia is distinguished from homicide by the intent of the agent of death. Homicide, or murder, generally results from malevolent intent, whereas the intent of euthanasia is to relieve current suffering or prevent greater suffering. Criminal charges of homicide, manslaughter, or murder are more likely to be brought against the provider agent in a case of euthanasia if the individual who died was not already near death.
Distinctions in Euthanasia
The roots of the term euthanasia are found in the Greek words eu, meaning “good” or “easy,” and thanatos, meaning “death.” Thus the term originally referred to a painless and peaceful dying. Over time, however, it has come to be applied to the act or practice of killing hopelessly sick or injured individuals or animals for reasons of mercy, in order to avert continued or increased suffering. The “good death” of euthanasia may be synonymous with “death with dignity” in individual cases. For many people, a death in which the dying process is pointlessly prolonged, causing needless pain and suffering, constitutes a “bad death.” In clinical practice, prolonging life for the net effect of prolonging suffering can be seen as a violation of a fundamental rule of medicine: Primum non nocere (“First do no harm”) (Fulton and Metress 1995).
Many observers make critical distinctions about hastened or assisted death along the dimensions of voluntary versus involuntary and active versus passive. In passive euthanasia, medical personnel withhold or withdraw treatment from a terminally ill or seriously injured patient and allow the patient to die due to the disease or injury. Some ethicists consider the withdrawal or withholding of medical treatment, especially nutrition and hydration, to be an act of omission. In contrast, active euthanasia is an act of commission, in which the intent of the course of action is the death of the patient, whether that patient dies through lethal injection or some other means or is actively assisted in the dying process. In voluntary euthanasia, a competent patient gives informed consent to withhold treatment, whether in a verbal expression of intent, through a living will, or through a statement of medical wishes made while the patient was competent and later expressed by a health care proxy. In involuntary euthanasia, others make decisions on behalf of the incompetent patient, and they may or may not have verbal or written expressions of the patient’s wishes to guide the process. Unforeseen circumstances often create uncertainties for competent patients, the proxies of incompetent patients, and attendant physicians, health care staff, and family members.
The distinctions noted above are consequential for the discussion of PAS and euthanasia. The legal system and public opinion in the United States generally have been more tolerant of passive euthanasia, the practice of allowing a person to die by withholding or withdrawing life support when further procedures will only prolong suffering in the dying trajectory or maintain the person in a persistent vegetative state, than they have been toward the practice of active euthanasia.
As Albright and Hazler (1995) point out, widely differing religious, moral, governmental, and personal views of death, especially in light of medical and technological advances in prolonging and sustaining life, have resulted in widely divergent opinions and ethical perspectives on euthanasia. People’s ethical and moral perspectives are often guided by their religious beliefs. Corr et al. (2000) summarize the perspectives on euthanasia of the major world religions as described below.
In Judaism, a central belief is that all life comes from God and is of infinite value; therefore, the duty is to preserve life, and active euthanasia is morally unacceptable. This tenet is derived from the Mishnah:
They do not close the eyes of a corpse on the Sabbath, nor on an ordinary day at the moment the soul goes forth. And he who closes the eyes of a corpse at the moment the soul goes forth, lo, this one sheds blood. (Shabbat 23:5; quoted in Corr et al. 2000:498)
Supportive text can be found in the Babylonian Talmud:
The rabbis taught: Who closes the eyes of a dying man is like a murderer, for it is the same as a candle which is about to go out. If a man lays a finger on the dying flame, it immediately becomes extinguished, but if left alone would still burn for a little time. The same can be applied to the case of an expiring man; if his eyes were not closed, he would live a little longer, and hence it is like murder. (Tract Sabbath; quoted in Corr et al. 2000:498)
In Christianity, a core belief is that all life comes from God and is therefore sacred; the duty is to be compassionate and to provide proper care to ourselves and others in a loving way. Among the many denominations that represent modern Christian belief there are various doctrinal perspectives on appropriate moral conduct in end-of-life situations, but most place an emphasis on palliative care. In the Bible, Jesus says that the first commandment is to
love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength. The second is this: “Love your neighbor as yourself.” There is no commandment greater than these. (Mark 12:30-31)
In the theological tradition of the Catholic Church, physician-assisted suicide is viewed as a variant of euthanasia, which is seen as a breach of an individual’s ethical responsibilities to self, the larger society, and God (O’Rourke 1991). In a survey of nurses, Nagy (1990) found general support for passive euthanasia and strong opposition to active euthanasia. The sample split sharply along religious lines, however, with Catholics indicating greater opposition to any form of euthanasia.
In the Islamic faith, Allah is the source of all life, and suffering reminds human beings of their misdeeds and brings them closer to God. Therefore, human interference through euthanasia thwarts the divine plan for each person. Mohammed instructs the faithful in the Koran, “Do not destroy yourselves” (4:29). The 1981 Islamic Code of Medical Ethics extends this principle:
[The] doctor is well advised to realize his limit and not transgress it. If it is scientifically certain that life cannot be restored, then it is futile to diligently [maintain] the vegetative state of the patient by heroic means … It is the process of life that the doctor aims to maintain and not the process of dying. In any case, the doctor shall not take positive measures to terminate the patient’s life. (First International Conference on Islamic Medicine  1991:10; quoted in Corr et al. 2000:500)
In Hinduism, all reality flows from Brahmin, a featureless entity that arises from all that is. The reincarnation cycle is governed by the effects of karma, the consequences of the actions that individuals perform. Ending or maintaining life through medical intervention can interfere with the workings of karma, and suffering is one way to pay karmic debt. Therefore, assisted suicide and euthanasia can be undesirable courses of action, accumulating further karmic consequences for the recipient and the agent of hastened death.
A related principle is ahimsa, or the avoidance of violence, based on the idea that life is sacred. As Mohandas Gandhi explained: “Ahimsa does not simply mean nonkilling. Himsa means causing pain to or killing any life out of anger, or from a selfish purpose, or with the intention of injuring it. Refraining from so doing is ahimsa” (quoted in Crawford 1995:115; as quoted in Corr et al. 2000:501). Gandhi (1980) also said, “Should my child be attacked with rabies and there was no helpful remedy to relieve his agony, I should consider it my duty to take his life” (p. 84; quoted in Corr et al. 2000:501).
In Buddhism, there is no God the creator. Karma drives the reincarnation cycle, and salvation lies in ending the cycle of death and rebirth. To desire an end of suffering is not unworthy, as Rinpoche ( 1993) relates:
The person who decides that they have had enough suffering and wish to be allowed to die is in a situation that we cannot call virtuous or non-virtuous. We certainly cannot blame someone for making that decision. It is not a karmically negative act. It is simply the wish to avoid suffering, which is the fundamental wish of all living beings. On the other hand, it is not a particularly virtuous act either … Rather than being a wish to end one’s life, it’s a wish to end suffering. Therefore it is a karmically neutral act. (P. 374)
However, active euthanasia can be an unacceptable course of action. In the Vinaya-Pitaka, or Book of Discipline, the Buddha says:
Whatever monk should intentionally deprive a human being of life or should look about so as to be his knife-bringer, or should praise the beauty of death, or should incite [anyone] to death, saying, “Hullo there, my man, of what use to you is this evil, difficult life? Death is better for you than life,” or who should deliberately and purposefully in various ways praise the beauty of death or incite [anyone] to death: he also is one who is defeated, he is not in communion. (Quoted in Corr et al. 2000:502)
Arguments Concerning the Practice of Euthanasia
In brief, the philosophical and moral debate about voluntary active euthanasia revolves around fundamental differences in perspectives (Parakh and Slesnick 1992; Rachels 1986). Those who support the practice of euthanasia employ three main arguments: the “mercy” argument, the “Golden Rule” argument, and the “enhancement of liberty” argument. The mercy argument extends compassion for the suffering person to include prevention of further suffering. The Golden Rule argument, as paraphrased from the Books of Matthew (7:12) and Luke (6:31) in the Bible, is that people should “do unto others” as they would have others do unto them—by implication, they should deliver others from misery. The enhancement of liberty argument, also referred to as the “autonomy,” “right to die,” or “quality of life” argument, is that a competent person should have the right to refuse medical treatment and even to request assistance in ending his or her own life. Each of these arguments is consistent with the secular philosophy of relativism.
Those who oppose the practice of euthanasia employ three main arguments also: the “Thou shalt not kill” argument, the “hope for a cure” argument, and the “slippery slope” argument. The religious prohibition “Thou shalt not kill” has been also translated as “Thou shalt not murder,” emphasizing the overriding principle of preservation of life while excluding acts of justifiable killing, such as killing in self-defense or defense of others and killing in time of war. In essence, this central argument against the practice of euthanasia is consistent with the civil and religious prohibition against killing, even of oneself, regardless of circumstances, and the secular philosophical perspective of vitalism.
Those who use the “miraculous recovery” or hope for a cure argument take the point of view that medical diagnoses and prognoses are never certain and the possibility always exists that promising lines of research may yield improved treatments that could provide reasonable hope for an individual’s recovery. However, the actual effect of adhering to this principle could be for both patient and medical personnel to become accustomed to suffering “because of moral uncertainty or unclarity” (Corr et al. 2000:497).
Those who make the slippery slope argument assert that the social acceptance of assisted or hastened death could contribute to abuses in other applications. For instance, the social legitimation of public policy and medical practice to allow euthanasia, and the availability of venues to provide euthanasia and hastened death services in appropriate situations to qualified patients, could lead to a progression from voluntary to involuntary euthanasia or to the inappropriate application of involuntary euthanasia in some cases, motivated by monetary considerations such as inheritance or the desire to avoid the emotional and financial costs of caring for terminally ill persons. The practice of involuntary euthanasia of terminally ill or critically injured patients could in turn be extended to persons in a persistent vegetative state, patients who are seriously injured and comatose, disabled and impaired persons, socially marginal individuals in custodial care situations, and, by implication, other socially marginal individuals or groups in the larger society. Indeed, Nazi doctors and health care staff participated in what was called euthanasia in following Hitler’s policy of Vernichtung lebensunwerten Lebens, or the “extermination of valueless life” (Kastenbaum 1998:238). The Nazis defended their elimination of the infirm, a large proportion of the institutionalized population, homosexuals, and criminals as “mercy killing” and as a practice promoting economic efficiency. With the participation of government agents and physicians, these “measures of expediency” derived from policies socially identified as euthanasia were extended to the genocide of Jews, Romanies (so-called Gypsies), and millions of other people (Friedlander 1995).
Medical objections to the practice of active euthanasia have included the argument that taking a patient’s life is inconsistent with the responsibilities and values of a healer. It is difficult, however, for doctors and other health care workers to witness unrelieved suffering and hear individuals’ pleas for assistance in dying and remain professionally and personally detached. Physicians who decide to relieve suffering may be mistaken about the potential for recovery in individual cases. Doctors can face serious legal consequences for participating in assisted death or “death by request” actions, and if euthanasia or hastened death services are ever to be legalized, clear procedural guidelines will be necessary to safeguard physicians providing such services from potential malpractice suits and criminal charges. Regardless of the law and public policy, however, some physicians hold religious or ethical convictions that would prevent them from taking a person’s life under any professional circumstances.
Some who argue against the practice of euthanasia have proposed that people who ask for assistance in dying are asking too much of others, and that each act of euthanasia results in the loss of the benefits to society of the exchange between the patient and others in the time of the natural life-to-death process (Travis 1991). When a person’s death is brought about before his or her illness has run its fatal course, that person may be deprived of a valuable period of good life, and his or her family and friends may be deprived of the shared intimacy of the dying process, losing an irreplaceable time in which to express reciprocal love and provide companionship. Yet some patients will prolong their time for living and renegotiate their conditions of dying once they are assured that hastened death services are a viable option.
Brescia (1991) asserts that recognizing the onset of the dying process is crucial to the physician’s ability to make further decisions about a patient’s medical care. Such recognition can prevent a patient from undergoing useless treatments or unnecessary procedures or from taking inadequate medications; it is “not an excuse to balance death with suffering or to request the frail ill to move aside.”
From a counselor’s perspective, the issues of autonomy, nonmaleficence, and beneficence are of paramount importance in discussions with patients about euthanasia decisions (Albright and Hazler 1995). Maier and Newman (1995) suggest that the factors of informed consent, competence, intent, and the physical and emotional status of the terminally ill patient are particularly relevant in euthanasia decisions. Shapiro and Miller (1994) investigated how medical students approach clinical ethical dilemmas related to euthanasia and found that the principles of patient autonomy and rights, economic constraints, and utilitarianism were issues of paramount concern. In general, they found that men were more likely than women to address utilitarian and cost-containment issues from a logical perspective and that women were more likely than men to incorporate patient and family rights from a social issues perspective.
The diagnosis and management of psychiatric disorders in medically ill patients merits serious professional, ethical, and legal consideration in any discussion of euthanasia, as such disorders can influence individuals’ ability to cope with the crises embedded in illness processes and considerations of mortality (Kelly and Varghese 1996). A patient’s decision to pursue assisted suicide options must be both rational and autonomous, and must not be motivated primarily by depression (Weir 1992). Neither physicians nor psychiatrists want to enable the mentally ill to commit assisted suicide, and one of the safeguards often recommended for any legalized form of voluntary euthanasia is mandatory psychiatric review that is especially sensitive to patient ideation and symptoms indicative of major depression and/or delirium that can interfere with rational decision-making processes (Ryan 1995).
After Oregon passed a law permitting physician-assisted suicide in 1994, about two-thirds of surveyed psychiatrists in that state agreed that a physician should be permitted to write prescriptions for lethal medications for qualified patients, whereas one-third were opposed to the practice. Only 6% of those surveyed thought they could evaluate in a single session whether a patient had a psychiatric disorder that was resulting in impaired judgment in relation to an assisted suicide request (Ganzini et al. 1996). Groenewoud et al. (1997) found in a sample of 552 Dutch psychiatrists that 64% thought PAS requests from patients with mental disorders could be acceptable; 12% had provided hastened death services in the past, and an additional 45% were willing to assist in such services. The psychiatrists who said that they refused to assist noted that the following factors affected their decisions: belief that the mental disorder was treatable, doubt that the patient’s suffering was unbearable or hopeless, and opposition to suicide in principle. Most, but not all, of the mentally disordered patients who had received PAS or euthanasia assistance from the Dutch psychiatrists were terminally or seriously physically ill as well.
As noted above, some have argued that the legalization of euthanasia could result in the failure of civil protections for vulnerable segments of the population or the actual abuse and exploitation of “marginal” individuals with limited social and practical support systems. Werth (1999) provides information on the professional standards of the American Counseling Association, the American Psychiatric Association, and the National Association of Social Workers concerning ethical conduct in assisted death services.
Active Euthanasia: The Netherlands Experience
Both opponents and proponents of physician-assisted suicide and euthanasia have referenced the model used in the Netherlands. Although Dutch law states that anyone who takes a life can be punished, a series of legal decisions made from 1970 to 1990 made it clear that physician-assisted euthanasia would not be prosecuted under certain conditions. In 1993, the Dutch legislature passed a bill under which physicians are allowed to take active steps to end the lives of patients who request a “dignified death.” The guidelines include the following requirements: The patient has a confirmed terminal diagnosis; the patient has made a written request affirming a wish to die; the patient is enduring unbearable and incurable physical suffering; and the appropriate documentation is provided to the coroner (Cox 1993; Dupuis 1993). The means of hastened death include refusal of treatment by the patient, physician decision to forgo medical intervention, indirect euthanasia through accelerated pain management procedures, assisted suicide, and active euthanasia at the request of the patient. Koenig (1993) points out that 85% of assisted suicides in the Netherlands occur among the elderly, who seek assistance primarily from general practitioners.
Proponents argue that the availability of direct lifetermination procedures allows terminally ill patients to choose more humane ways to die and may actually contribute to life extension, because patients are freed of fears about painful incapacitation and the eventual inability to commit suicide. In a study of AIDS patients in the Netherlands, Bindels et al. (1996) found that more than one-third had made a decision to utilize physician-assisted hastened death services as “an extreme form of palliation, applied in the terminal phase of the disease” (p. 499).
Hendin (1995) notes that legalization of PAS and euthanasia in the Netherlands has promoted a transformation of suicide and assisted death into a preferred mode of managing patients with serious or terminal illness. A survey commissioned by the Dutch government found that of the 130,000 deaths occurring in the Netherlands in 1990, approximately 2,300 were reported cases of active euthanasia and 400 were assisted suicides; the researchers estimate that an additional 1,000 people had hastened deaths without making formal requests for such intervention, and in nearly 1,900 deaths physicians increased dosages of pain-relieving drugs with the explicit purpose of hastening death (van der Maas, van Delden, and Pijnenborg 1992). Additional concerns arose in 1995 when a physician provided lethal medication to an infant who had been born with terrible and unrelenting pain from a spinal column defect, with authorization from the parents (Kastenbaum 1998). The controversy derived from the fact that the infant was not terminally ill and the decision involved the substituted judgment of the parents as surrogates about the quality and conditions of the newborn’s life.
Do these latter cases represent a slide of social values down the slippery slope of expediency? Relevant issues from the Dutch experience include the viability as euthanasia candidates of patients who are not physically ill, the provision of euthanasia services to competent patients without consultation or informed consent, and the possibility that the appropriate medical application of euthanasia might become inappropriately available to patients with suicidal depression, to family members with ambiguous agendas and mixed motives, to health care proxies facing unforeseen complications and decisions to be made on behalf of patients, and to the health care providers responsible for allocations of resources, involving complex decisions balancing extent and kind of medical interventions and quality-of-life assessments for individual patients.
On November 28, 2000, the lower house of the Dutch Parliament approved a bill legalizing euthanasia (Deutsch 2000), adopting the informal guidelines already in practice and clearing the way for the upper house of the Parliament to endorse the euthanasia legislation in 2002 (Visser and Meijburg 2003). Dutch officials stressed that the Netherlands is not interested in becoming the international provider of euthanasia services; indeed, foreigners would not be able to meet the criterion of a long-term doctorpatient relationship.
Does the Dutch model provide a preview of the possible progression of outcomes in the American experience?
From the physician’s perspective, assisted suicide may sometimes seem necessary and justifiable, a reasonable, compassionate, even merciful action to end a patient’s life in the face of known terminal circumstances and disease or trauma trajectory, overwhelming suffering, or the presence of an unrelenting persistent vegetative state. The patient’s pain and suffering are often the primary motives for a PAS request, but they may not be the only ones. Palermo (1995) includes among the possible motives the collaborating factor of the physician’s loss of professional authority and influence over the progression of the terminal trajectory and suggests that PAS reflects a utilitarian approach to limiting suffering by eliminating the one who suffers.
Such concerns have shaped the public examination of fundamental questions regarding assisted death and medical euthanasia. Is rational or assisted suicide legal, moral, and/or ethical? Should hastened death services be restricted to terminally ill patients, or should persons suffering from debilitating conditions or from intolerable life circumstances be considered qualified candidates? Can we be sure that a patient is making an assisted death decision that is not influenced by the pressures of family concerns or economic circumstance? Can we implement sufficient safeguards to differentiate patient psychological distress from physical suffering? How many consultations are adequate to determine the advisability or need of assisted death in a given case? What kinds of people should serve on euthanasia review boards? The public debate in the United States has generally focused on two central issues: Should physician-assisted suicide and/or euthanasia be permitted, and, if so, what kind of legal and medical regulation should be required?
Quill, Cassel, and Meier (1992) have proposed a number of clinical criteria to guide physician decision making about assisted suicide. These include the following requirements: The patient must clearly and repeatedly express a wish to die of his or her own free will and at his or her own initiative, the patient’s judgment must be undistorted; the patient must have an incurable medical condition that involves unrelenting and intolerable suffering, the physician must exhaust the known protocols of comfort care, the physician-assisted suicide must occur only within the parameters of a meaningful medical relationship, the physician must obtain due consultation with another physician who is well versed in comfort care, and the physician must maintain appropriate documentation. Klagsbrun (1991) notes that any documentation of physician-assisted suicide should include verification that the patient does not have treatable depression or symptoms of pain and discomfort that are responsive to palliative care and that the patient’s discussion with the physician should have “duration, depth, and intimacy.”
Compassion in Dying, a nonprofit organization operating in Washington State, has proposed guidelines and safeguards for physician-assisted hastened death. According to Kastenbaum’s (1998) summary of these guidelines, they limit eligibility for assisted death to competent terminally ill adult patients experiencing severe and intolerable suffering. The patient must fully understand his or her diagnosis and prognosis. The request for assisted death services must not result from economic considerations or inadequate palliative care. An independent mental health evaluation must be obtained in order to verify that the patient understands the consequences of the decision and that the request is not motivated by emotional distress or depression. The consent of the patient’s family and confirmation by an independent physician are also required. The patient must make three written and signed requests for hastened death, with at least a 48-hour interval between the second and third requests. Finally, any indication of indecision on the part of the patient or opposition from the patient’s immediate family must cancel the process.
Policy Statements Regarding Pas and Euthanasia
Cultural trends in the United States since early in the 20th century have included intervention in and medical management of the process of individual death. Increasingly, this has included the incorporation of the use of sophisticated technologies that can aid in symptom management, improve palliative care, and prolong the dying trajectory. Because of the bureaucratization necessary at this level of intervention, end-of-life decision making has become a matter not only of individuals’ rights to self-determination but of public moral deliberation and social policy. The possibility of the legalization, or at least decriminalization, of PAS and voluntary active euthanasia as a matter of public policy, in recognition of the intensely personal and painful nature of this decision at the end of life, has brought the matter to public debate. As one author has noted, “For me and many others, the right to die in a manner of one’s own choosing is the ultimate civil liberty” (Humphry 1992:75). When Elisabeth Kübler-Ross (1974) was asked about pending legislation on euthanasia, she replied:
I find it sad that we have to have laws about matters like this. I think that we should use our human judgment, and come to grips with our own fear of death. Then we could respect patients’ needs and listen to them, and would not have a problem such as this. (P. 84)
In the Netherlands, the 1984 policy statement of the General Board of the Royal Dutch Medical Association, which discusses the legalization of euthanasia and assisted suicide, notes that the physician is the appropriate agent to provide life-ending intervention within a medical context, that physicians who reject the provision of assisted death services in principle or have situational objections in specific cases must be prepared to refer patients requesting those services to other physicians, and that the acceptability of euthanasia should not be evaluated according to the cause of suffering or the phase of dying (General Board of the Royal Dutch Medical Association 1996).
There are crucial distinctions, both medically and legally, among the courses of action taken depending on whether the intent is to allow a person to die, to assist in patient suicide, or to perform active euthanasia. The National Council on Death and Dying was established “to address the dilemma of freeing people from meaningless suffering while enhancing the valuing of life” (Clouser 1991). An intense medical, social, and legal debate has questioned whether PAS represents abandonment of the patient or justified killing, breach of the commitment to “do no harm” or prevention of greater suffering, appropriate management of sophisticated technologies or a failure of those same technologies to improve care of the dying.
The ethics committee of Maison Michel Sarrazin (1994) in Quebec has considered the clinical, institutional, ethical, and legal dimensions of euthanasia policy and has recommended that prohibitions against the practice be maintained. The Committee on Bioethical Issues of the Medical Society of the State of New York also officially opposes physician participation in assisted suicide and euthanasia, noting that 57% of surveyed New York physicians endorse the legal prohibition of euthanasia (Rosner et al. 1992). After a discussion of the issues, the New York State Task Force on Life and the Law (1994) voted unanimously to oppose the legalization of physician-assisted suicide.
U.S. Constitutional Issues and Arguments
Is there a legal distinction between a patient’s refusing life-support technologies or refusing nutrition and hydration and a patient’s actively seeking physician-assisted suicide or hastened death through some form of euthanasia? The judicial assertion that the withdrawal of life-sustaining treatments or the administration of high levels of pain relief medications is equivalent to physician-assisted death services has been challenged (Orentlicher 1996).
In the United States, the courts’ consideration of the assertion of a constitutional right to die from assisted suicide or euthanasia has been restricted to the terminally ill. The federal appeals courts have essentially ruled that the constitutional “due process” and “equal protection” clauses extend the patient’s right to self-determination through refusing unwanted life-sustaining treatments to the right to seek physician-assisted suicide services (Sullivan 1997). In his ruling in a 1996 case, Judge Stephen Reinhardt of the Ninth Circuit Court of Appeals applied the “liberty interest” clause of the 14th Amendment and stated that the competent terminally ill adult may have an overriding interest in choosing a humane death instead of life in a state of helpless incompetence (Compassion in Dying v. State of Washington 1996). Judge Roger J. Miner of the Second Circuit Court of Appeals applied the “equal rights” clause of the 14th Amendment in another 1996 case, saying that the state has no interest in prolonging life for a person who is already in the process of dying (Quill v. Vacco 1996). The net effect of these rulings has been to bring legal reasoning closer to the social values attached to relief of patient suffering.
As Scofield (1991) notes, although the move toward legalizing assisted suicide appears to be supported by the constitutional “right to privacy,” it actually constitutes a more radical change in law and social practice than is immediately apparent. Scofield suggests that in light of the complexities involved, acceptance of assisted suicide represents a “dubious advance in patient rights or social justice.”
The U.S. Supreme Court Ruling
Legal challenges to state bans on physician-assisted suicide and hastened death services arose through the Ninth Circuit Court of Appeals in Compassion in Dying v. State of Washington (1996) and the Second Circuit Court of Appeals in Quill v. Vacco (1996). On April 2, 1996, the Second Circuit Court rejected New York State laws banning physician-assisted suicide. Soon after, the American Medical Association filed an amicus brief with the U.S. Supreme Court, opposing the legalization of physician-assisted suicide (Gianelli 1996).
On June 26, 1997, the U.S. Supreme Court unanimously upheld state laws that ban physician-assisted suicide (Savage 1997). In its ruling, the Court did not deny the terminally ill the option of obtaining pain medications in dosages that could hasten death, as long as the drugs are not prescribed explicitly to cause death. The Court made it clear that it would not go beyond a 1990 ruling that supported terminally ill patients’ constitutional right to reject life-support technologies and procedures, but distinguished that aspect of the patient’s right to autonomous self-determination from a constitutional “right to die” in the form of physician-assisted suicide. The Supreme Court’s ruling did not countermand the existing procedure that allows physicians to provide adequate pain relief even if the indirect effect of that action is to shorten life, a procedure known as “slow euthanasia.”
Even though terminally ill patients do not have a constitutional right to assisted death, the states retain the right to enact laws that legalize it. The Supreme Court’s ruling did not preclude states from passing legislation that would establish guidelines under which physicians may be allowed to hasten the deaths of patients in their care. Five of the nine justices suggested they might support such a claim in the future (Savage 1997). As Chief Justice William Rehnquist wrote, “Throughout the nation, Americans are engaged in an earnest and profound debate about the morality, legality, and practicality of physician-assisted suicide” (quoted in Denniston 1997:1A).
Oregon’s Death with Dignity Act
Although the U.S. Supreme Court unanimously upheld state laws that ban physician-assisted suicide on June 26, 1997, the Oregon Death With Dignity Act of 1994 was renewed by referendum on October 27, 1997 (Chin et al. 1999). Oregon is currently the only U.S. state that allows physician-assisted suicide. Under the Oregon law, physicians can prescribe lethal medication for patients who are at least 18 years of age, who have made three requests for hastened death (at least one of which has been written and signed in the presence of witnesses), and who have a life expectancy of 6 months or less, with notification of the family and after the provision of counseling, if appropriate; in addition, the drugs cannot be provided until at least 15 days after the initial request has been made (“Physician-Assisted Suicide” 1995).
Chin et al. (1999) conducted a study of the 23 people prescribed lethal medications in 1998 under the Oregon Death With Dignity Act and found that 15 died from the medications, 6 died from the disease process, and 2 were still alive at the time of their study. The researchers compared the PAS patients to patients in a matched control sample and found that the PAS patients were more likely to have never married and more likely to be concerned about loss of autonomy and loss of control about body functions, but there was no difference between the two groups of patients in regard to fear of intractable pain, concerns about financial losses, level of education, or extent of health care coverage.
In a study that compared the attitudes of medical students in Oregon with those of medical students living outside of Oregon, Mangus, Dipiero, and Hawkins (1999) found that more than 60% of both groups were in favor of legal PAS and expressed a willingness to participate in legal hastened death practices, although the Oregon medical students expressed significantly more hesitancy about actually providing patients with lethal prescriptions.
Attitudes of the General Public Toward Pas and Euthanasia
The findings of several studies indicate that approximately two-thirds of Americans currently endorse physician-assisted suicide (e.g., Blendon, Szalay, and Knox 1992; Bachman et al. 1996). In a 1990 poll conducted by the New York Times and CBS News, 53% of respondents agreed that a physician should be allowed to assist in the suicide of a terminally ill patient (Malcolm 1990). Among surveyed Canadian adults, 85% approve of withdrawing or withholding life-sustaining treatment for competent and consenting patients who are not likely to recover; in addition, 58% support PAS and 66% endorse euthanasia (Singer et al. 1995).
Using data gathered by the National Opinion Research Center’s General Social Surveys from a sample of 16,455 adults over the period from 1977 to 1994, Kearl (1996) found that support for PAS and euthanasia services for terminally ill patients decreases with age, yet there has been an increase in support over time in all age groups. He also found that respondents concerned with control issues showed stronger support for both PAS and euthanasia. According to Caddell and Newton (1995), the practices of active euthanasia and PAS are most strongly supported by highly educated, politically liberal American adults who have a relatively weak religious orientation; those in this group also prefer that a physician administer hastened death services rather than that terminally ill patients commit suicide.
Attitudes of Physicians and Health Care Workers Toward Pas and Euthanasia
It can be difficult to determine accurately the attitudes of health care professionals toward the practices of PAS and euthanasia. The inherent limitations of surveys on attitudes toward medical euthanasia include widely divergent definitions of PAS and euthanasia, selectivity of respondents and nonrespondents, sampling error, and embedded researcher points of view, which can strongly influence interpretation of findings. To date, the instruments used to assess these attitudes have employed hypothetical scenarios and anecdotes about situations that have developed in clinical practice. Respondents to questionnaires designed to assess medical professionals’ willingness to provide assisted and hastened death services if it were legal to do so and/or their actual current practice of PAS and medical euthanasia face potential legal repercussions if the confidentiality of their responses is insufficiently protected. Physicians may be more conservative toward euthanasia than are members of the general public, and their opinions often reflect the various individual medical circumstances presented and the amount and kind of psychiatric morbidity indicated in the patient who requests assisted death services (Chochinov and Wilson 1995).
Bachman et al. (1996) found that among surveyed physicians in Michigan, 40% endorsed legalization of PAS, 37% supported no government regulation, 17% favored prohibition of the practice, and 5% were uncertain. The lowest rates of support were found among strongly religious respondents. When the physicians in Bachman et al.’s sample were asked about their willingness to provide PAS if it were legal, 35% expressed a willingness to provide assisted death services if requested, 22% said they would provide voluntary euthanasia or PAS, and 13% said they would restrict hastened death services to only PAS. In a survey of Washington State physicians, Cohen et al. (1994) found that 54% favored legalizing euthanasia in some circumstances, although only 33% were willing to participate personally in these practices, and 48% thought euthanasia could not be ethically justified; 53% supported physician-assisted suicide in some situations, and 40% were willing to assist in patient suicide. In a follow-up study, Dickinson et al. (1998) compared the attitudes of physicians from South Carolina with Cohen et al.’s Washington State sample and found overall strong similarity in the profile of physicians’ attitudes in the two states. However, the researchers note that attitudes toward PAS and euthanasia were polarized.
In a survey of primary care physicians, Duberstein et al. (1995) found that 51% were opposed to PAS under any circumstances, 31% approved of legalization of PAS under certain circumstances, and 61% thought that suicide could be a rational option in certain circumstances. In addition, internists were less likely than family and general practitioners to be willing to provide euthanasia services, younger physicians were more likely to intervene to prevent a patient’s suicide, and female physicians were more likely to agree that suicide could be a rational decision on the part of a patient. According to Foley ( 1998), physicians who endorse physician-assisted suicide and direct medical euthanasia tend to view these practices as compassionate responses to a real medical need for competent but limited technological intervention in the care of terminal patients. Physicians who oppose these practices tend to view them as either morally wrong or extremely difficult to regulate.
In an investigation of Swedish physicians with specialties in the care of dying adult patients and palliative care and physicians from the Swedish Association for the Study of Pain, Valverius, Nilstun, and Nilsson (2000) found that half had discussed palliative care with dying patients, more than half had received patient requests for hastened death, approximately one-third had been asked for active euthanasia, and 10% had been asked for assisted suicide services. Although the physicians reported no cases of active euthanasia and only a few cases of assisted suicide, one-third of the physicians said that they had hastened a patient’s death through the administration of sufficient dosages of analgesic or other drugs.
Meier et al. (1998) conducted a national survey of physicians in specialties in which requests for PAS and euthanasia are likely and found that a substantial proportion had received such requests (18.3% for PAS, 11.1% for active euthanasia) and approximately 6% had complied, either through the provision of prescriptions to be used to hasten death or lethal injection. In a survey of oncologists, Emanuel et al. (1998) found that approximately 16% had participated in PAS or euthanasia; of those participating physicians, approximately 53% were comfortable with their decisions, approximately 24% regretted their actions, and approximately 40% reported fearing prosecution as a result. Additionally, only approximately 34% of the oncologists who had participated in PAS and euthanasia reported that they had adhered to proposed guidelines in having the patients make repeated requests for hastened death, establishing the presence of extreme physical pain and suffering, and consulting with colleagues regarding this action; approximately 16% of patients who had received PAS or euthanasia had not participated in the decision-making process.
In a study of patients with HIV infection, Breitbart et al. (1996) found that 63% reported support for PAS and 55% had considered PAS options for themselves. The AIDS patients’ predictor factors for interest in PAS were not related to pain severity, functional impairment, or symptom progression; rather, they were related to heightened psychological distress, previous experience with another’s terminal illness, and Caucasian ethnicity with low religious identification and perceived low levels of social support. In a study of physicians who provide medical care to patients infected with HIV, Slome et al. (1997) found that 48% were willing to provide assisted suicide services to AIDS patients (in contrast to the 28% who had said they were willing in a 1990 survey of consortium physicians) and that 53% had already done so at least once. Voigt (1995) suggests that physicians who treat HIV-infected patients should approach discussions about euthanasia with their patients by “opening the door, discussing diagnostic realities, determining patient fears, evaluating depression, determining expectations, establishing supports, discussing options, and discussing problems from the patient’s and the survivor’s perspective.”
Schwartz et al. (1999) conducted a survey of psychiatrists, internists, and family practitioners in Connecticut to investigate the influences of religious values, professional practice patterns, and ability to diagnose patient depression on attitudes toward PAS. The researchers found that although psychiatrists showed significantly more support for PAS than did internists or family practitioners, most respondents in all three groups of physicians were concerned about the effects of patient depression on requests for assistance in dying.
In a survey of registered nurses, Shuman et al. (1992) found that opposition to euthanasia was associated with strong religious beliefs, more years of experience, and the viewpoint of “death as an end”; nurses expressing support for euthanasia tended to be those who worked with dying patients, were politically liberal, and believed in a patient’s right to self-determination in health care decisions. Sorbye, Sorbye, and Sorbye (1995) conducted a survey of nursing students and found that the factors most strongly associated with restrictive attitudes about voluntary active euthanasia were religious belief, conservative political views, and the perception of life as meaningful.
Asch (1996) surveyed critical care nurses and found that 17% reported they had received euthanasia or assisted suicide requests from patients or family members, 16% had provided hastened death services, and an additional 4% had withheld ordered life-sustaining treatment. In Young et al.’s (1993) sample of oncology nurses, 47% approved of legalization of physician-assisted death services and 16% expressed a willingness to administer physician-ordered lethal injections to competent terminally ill patients who requested such services.
In a survey of hospital social workers’ attitudes, Csikai (1999) found support for both euthanasia and PAS as ethical practices that should be legal in certain situations. Many of Csikai’s respondents said that they would be willing to participate in appropriate situations, and almost 25% reported already having been asked by patients or patients’ family members for hastened death services.
In July 1, 1996, the Northern Territory of Australia passed the Rights of Terminally Ill Act, which legalized euthanasia. The law stood for 9 months, until its repeal on March 25, 1997 (Street and Kissane 1999-2000). Stevens and Hassan (1994) surveyed Australian nurses concerning the moral, ethical, and legal dimensions of euthanasia decisions and found that 60% endorsed legalization of active euthanasia under certain conditions, 19% had already acted to provide euthanasia to some patients, and 82% agreed that guidelines for medical practitioners about withholding and withdrawing medical treatment should be clarified. Kuhse and Singer (1993) also surveyed Australian nurses and found that among the nurses in their sample, 55% had been asked for active or passive euthanasia services by patients, 23% had been asked for assistance with such services by physicians, and 85% had assisted with hastened death actions. More than 75% of the surveyed nurses endorsed the euthanasia model as practiced in the Netherlands, and 67% thought euthanasia assistance to be a proper course of action for qualified patients under these guidelines.
In Hayes et al.’s (1999) survey of medical students in a third-year clinical clerkship who were enrolled in a pilot medical ethics program, respondents reported participating in end-of-life decision making, with evaluation of patient quality-of-life considerations and autonomy issues. They also reported having concerns about actual and potential legal liability and expressed polarized attitudes about PAS. These findings suggest that medical ethics programs need to prepare future physicians for clinical practice that is consistent with ethical guidelines and end-of-life legislation. This includes focusing on pain management and symptom relief, clarification of legal issues, training in how to resolve conflicts that arise from clashes between personal values/beliefs and public opinion and public policy, and encouragement of appropriate role-modeling behaviors in mentoring residents and attending physicians.
To summarize: Among practicing physicians and nurses in the United States, approximately 43% endorse legalization of PAS and 34% favor prohibition of PAS, 54% favor legalization of euthanasia in some circumstances, an additional 37% support no governmental regulation of this aspect of medical practice, and 28% would provide hastened death services or are already practicing PAS and/or euthanasia. Government regulation of PAS and medical euthanasia may be necessary, given the surreptitious practices revealed by recent surveys of physicians and health care workers.
The issues I have discussed in this chapter came into sharp focus for me recently. On Monday of my university’s fall break in 2002, I was told that I had diverticulitis, a digestive difficulty common in midlife. On Tuesday, the diagnosis was changed to “pelvic mass,” on Wednesday to “ovarian cancer,” and on Thursday to “metastasized ovarian cancer with a compromised lymph system and liver.” The physicians related survival statistics of a few weeks or at best a few months. As I sit at my kitchen table on this beautiful autumn afternoon, bathed in the toxic sweat of terminal illness and fighting down nausea, my perspective has been clarified. The patient’s right to self-determination must include the right to preauthorize or to eliminate euthanasia as an option for ethical and humane end-of-life care. No one else can determine how much pain I can stand, or for how long. Even I do not know at this moment, but I do know this: No one else should dare to stand between me and my God.