Right to Die, Policy and Law
RIGHT TO DIE, POLICY AND LAW•••
Prior to World War II, death came naturally or accidentally. There was little that doctors could do to forestall it. With the development and application of a variety of drugs and devices, this slowly began to change in the 1950s and 1960s. In addition to the improved medical capabilities, public attitudes toward the respective roles of physicians and patients in making decisions about whether to deploy medical technology also began to shift. In the 1950s and 1960s, influenced by the civil rights and the consumer rights movements, the public gradually shifted the almost sole responsibility for deciding whether and how to treat patients from physicians' hands to the hands of patients or their families.
The Development of Patient Autonomy
Autonomy—or as it is sometimes referred to, self-determination—is the core value that has driven the development of the right to die, as well as the more fundamental right to refuse medical treatment out of which the right to die has grown. Legal recognition of the right of patients to make decisions about the medical care they do and do not wish to receive has deep historical roots. However, the right to make medical decisions is itself of relatively recent vintage, perhaps because until recently there was not a great deal in the way of medical treatment to choose from and certainly not much that was efficacious. Before the last decades of the twentieth century, there was not so much a right of patients to choose but a right to veto what the doctor proposed.
As medical capability has gradually increased, so have efforts aimed at increasing the role of patients in making decisions about whether and how to employ that capability. Autonomy has had a long struggle to dislodge the longstanding dominance of medical paternalism in the doctor-patient relationship. By the last quarter of the twentieth century, patient autonomy had become the prevalent value in law, public policy, and bioethics. However, there remains a considerable gap between theory and actual clinical practice (Solomon, et al.).
Another important trend that has affected the shift in medical decision making is the role of law in society in general. Prior to the twentieth century, law played a much more limited role in resolving controversies among private citizens and lawsuits by patients against physicians were exceedingly rare. These few lawsuits fell into two groups: claims based on an allegation of negligent medical practice, and claims of nonconsensual treatment amounting to a civil battery. Ultimately, these two themes were merged in the 1950s and 1960s in the development of the concept of informed consent to medical treatment.
Originally, the law of battery played the more significant role. Although mostly thought of as a protection against conduct involving violence against another person (and in fact it does provide such protection), battery provides a legal remedy for an intentional, nonconsensual touching of another person that results in either harm or offense. Out of the law of battery developed a right to refuse medical treatment. The relationship between the two is clear: the converse of the right not to be touched—in a medical context, treated—without consent, is a right to refuse treatment. Viewed from a broader perspective, the law of battery could be seen as creating a right of individual autonomy or self-determination, and certainly there is significant judicial authority to support that view.
Prior to the 1970s, the right to refuse treatment existed more in form than in substance. In clinical medical practice, although it is unlikely that physicians frequently forced treatment on unwilling patients, the instances in which they did were of the sort—emergencies, patients lacking in decision-making capacity—that any legal challenged was unlikely to arise. In most instances, the situation was such that either the patient recovered and in retrospect no longer objected to the treatment or the patient died or was otherwise unable to pursue a legal remedy.
The Era of Passively Hastening Death
The two trends—of medicine's increasing ability to stave off death if not provide complete cure, and the increasing recognition of patient autonomy—collided in the Karen Ann Quinlan case in 1975 (In re Quinlan,). It is virtually certain that such collisions occurred before the Quinlan case, but none of these clinical cases metamorphosed into legal cases with the attendant public visibility of Quinlan (Filene).
Karen Ann Quinlan, a twenty-one-year old woman, stopped breathing and was taken to the hospital by emergency medical personnel. Doctors were able—through a variety of medical means that were not available only a decade earlier—to resuscitate her. She was then placed on a ventilator. Because of prolonged oxygen deprivation before she was resuscitated, Quinlan suffered severe brain damage and was ultimately diagnosed as being in a persistent vegetative state, a condition in which her brain stem was still alive and maintained her so-called vegetative functions (digestion, metabolism, etc.), but in which the remainder of her brain had died and along with it the higher brain functions such as awareness and cognition.
When Quinlan's prognosis became clear to her parents, they concluded that Karen would not want to be kept alive in this twilight state in which her corporeal existence was maintained but in which she could no longer, think, feel, perceive, or have any contact with other people or her environment. Therefore, after seeking additional medical consultation and religious counseling, they requested that her doctors discontinue the ventilator that was keeping her alive, and that she be allowed to die naturally.
The doctors, however, refused. They refused because they believed it was contrary to the ethics of the medical profession to do so. The treating physicians and several of the qualified experts who testified in the case asserted that removal from the respirator would not conform to medical practices, standards, and traditions. The physicians also refused because they were concerned that they could be subject to liability for criminal homicide if they did so. In effect, the doctors issued an invitation to Quinlan's parents to sue, which they accepted by filing an action for a declaratory judgment—not a case seeking monetary damages against the doctor, but a case requesting the court to declare that Karen had the right to have life-sustaining medical treatment removed, which would, it was thought, inevitably lead to her death.
The trial court refused to issue such an order, and the Quinlan family appealed to the New Jersey Supreme Court. Although the court's opinion is confused and important portions of it were superseded by later decisions, it did grapple with a number of fundamental ethical and legal issues in an unprecedented way. It prescribed procedures for making end-of-life decisions that did not routinely require judicial supervision, and it endowed physicians and patients' close family members with substantial discretion to carry out what they believed to be the patients' wishes about forgoing treatment.
The Quinlan decision, despite its shortcomings, can be said to be the foundation on which an entire body of law and public policy have been erected concerning end-of-life decision making. This case ushered in what in retrospect should be called the era of passively hastening death because, along with similar cases that followed in its wake for the next fifteen years or more, it established the right of terminally ill and permanently unconscious patients to have their deaths hastened passively, that is by having life-sustaining medical treatment withheld or withdrawn.
The Consensus about Forgoing Life-Sustaining Treatment
The Quinlan case was a catalyst to the development of law and policy about the termination of end-of-life medical treatment. It spurred state legislatures to adopt advance directive legislation intended to head off similar litigation. Federal and state commissions were appointed to study and make recommendations on these issues. Other landmark cases were litigated in other states; in the quarter century following Quinlan, courts in half the states decided more than one hundred similar cases—and within a decade, a remarkably uniform body of law and policy had emerged.
Each element of this consensus fed the others. Court cases spurred legislative action. Government commissions relied on important court cases and legislation as guidance for their deliberations and recommendations. Further court cases adopted the recommendations of the commissions. Although there are some important exceptions, taken together, these cases, statutes, and commission reports constitute a consistent consensus about how end-of-life decisions should be made.
Although Congress and the United States Supreme Court have played some role in its development, the legal components of this consensus have been almost exclusively state appellate judicial cases and state legislation. By the time the Supreme Court issued its first and only ruling in a case involving the passive hastening of death—the Cruzan case in 1990—the consensus was largely developed based on state law. The Cruzan ruling did little more than put the Supreme Court's imprimatur on a number of features of the existing consensus.
In the wake of Cruzan, Congress enacted the Patient Self-Determination Act (PSDA) in the same year. This law required institutional providers of healthcare to provide patients with information about their decision-making rights—including the right to make an advance directive. However, the Act was entirely procedural in nature; it did not establish any new rights, but only required that patients be told about their already-existing rights under state law.
COMPETENT PATIENTS. The centerpiece of the consensus on end-of-life decision making is the unanimous agreement that competent patients have a legal right to refuse treatment. So well established is this right that its existence has been largely assumed by both courts and legislatures. Although no court has ever said that this right is absolute, the manner in which courts increasingly discuss and apply it strongly suggests that they are headed toward that conclusion. In addition to the strong support in law-making institutions, the consensus of the public, of policy makers, of bioethicists, and the healthcare professions also supports a strong right to refuse medical treatment for competent patients.
LEGAL SOURCES OF THE RIGHT. Although in the Quinlan decision the New Jersey Supreme Court predicated the right to refuse treatment on a federal constitutional right of privacy, few other courts have based rulings on the right to privacy. It has become clear that this is a particularly weak basis for the right. Later courts have tended to ground the right in the common law—specifically, in the right to be free from unwanted interferences with bodily integrity protected by the law of battery. The United States Supreme Court, when addressing this issue in the Cruzan case, stated that the "logic of" a series of earlier cases decided by the Supreme Court suggests that there is a constitutional basis for such a right, but assumed this logic without actually holding that such a right exists. Presumably, this right is grounded in the protection of liberty contained in the Fourteenth Amendment to the United States Constitution, rather than the discredited right of privacy cited in Quinlan.
Regardless of the particular constitutional provision in which this right is grounded, the right is one that may only be asserted against individuals or institutions acting as agents of a state or federal governmental entity, and not against private individuals or institutions. Thus, the broadest and firmest legal basis for the right to refuse treatment is state law—state common law, state statutes, and state constitutional provisions—because it usually accords protections against actions taken by private individuals and institutions as well those taken by agents of the state.
HOW ABSOLUTE IS THE RIGHT? It can be said with absolute certainty that no legal right is absolute. In cases predating the Quinlan decision—mostly involving the refusal of blood transfusions by members of the Jehovah's Witness religion—judges readily gave lip service to the right to refuse treatment but exhibited an enormous reluctance to match words with deeds, and exhibited a high degree of creativity in evading the full implications of the right. They did so by finding patients incompetent who might not have been, declaring emergencies on flimsy evidence, and insisting that the state had a strong interest in children having two living parents.
With the passage of time, these efforts to evade the full force of a competent patient's strong right to refuse treatment have substantially dissipated if not disappeared. In a series of legal cases beginning in the late 1980s, courts—especially the Florida Supreme Court (Wons v. Public Health Trust; In re Dubreuil), but others too—began gradually to enforce a full-blown right to refuse treatment when Jehovah's Witnesses refused blood transfusions. No longer did judges find patients incompetent primarily because they refused treatment, nor find an emergency to exist simply because a physician says the patient would probably die without a blood transfusion. Courts also recognized that parents of minor children have no obligation to avoid risk-taking behavior simply because they are parents of minor children (Fosmire v Nicoleau).
This change in attitude is probably accounted for primarily by the fallout from Quinlan and cases like it. As courts increasingly strengthened the right of terminally ill or permanently unconscious incompetent patients to refuse treatment, it became increasingly difficult, if not impossible, to justify denying that right to fully competent patients. It is significant that although the objection to medical treatment in the Jehovah's Witness cases was based on religious belief, the decisions themselves were generally grounded on a common-law right to refuse treatment applicable to all, regardless of religious belief.
A parallel trend beginning in the mid 1980s involved non-religious refusers of treatment who also were not terminally ill or permanently unconscious. In a handful of cases beginning in the mid-1980s, permanently disabled, competent patients began to raise the question of whether they had a right to refuse life-sustaining medical treatment. In the landmark Bouvia case in California, the court held that a woman in her 30s, a victim of cerebral palsy, had a right not to be force fed by medical procedures even if the refusal led to her death (Bouvia v. Superior Court). In three cases in Georgia (State v. McAfee), Nevada (McKay v. Bergsted), and California (Thor v. Superior Court), the highest courts in those states held that quadriplegic accident victims who were being kept alive by ventilators had the right to refuse further treatment and thus die. In all four of these cases, if treatment were continued the individuals were likely, with adequate nursing care, to have a relatively long life expectancy and to remain mentally intact.
Thus, it was not just the patients who were as close to death as they could be while still alive who had the right to refuse treatment and allow nature to take its course, but also patients whose prospects for a meaningful existence were virtually certain.
INCOMPETENT PATIENTS' RIGHT TO REFUSE TREATMENT. A core point of the Quinlan decision, which has become a cornerstone of the consensus on end-of-life decision making, is that incompetent patients, as well as competent patients, have a right to refuse medical treatment. Quinlan and subsequent cases raised two subsidiary issues. The first was whether the termination of life support would raise the prospect of legal liability for criminal homicide on the part of those who terminated treatment. The second was whether or not there were any limits on the right to refuse treatment.
Lack of criminal liability. In the development of the consensus in the courts, in public policy—most notably by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (President's Commission)—and in bioethics, there has been a unanimous assertion that forgoing life-sustaining treatment that results in a patient's death does not constitute a crime as long as there is proper authorization for the termination of treatment, either from the patient, from someone legally authorized to speak for the patient, or from a court.
There are a number of explanations offered in support of this conclusion. One is that when treatment is withheld or withdrawn, there is no intent to kill but rather to relieve suffering. Thus there cannot be liability for homicide or aiding suicide because each of these crimes requires intent. Another is that the cause of death is not the conduct of the party who withholds or withdraws treatment (or who authorizes the termination), but the patient's underlying illness or injury. It can be asserted that the patient is not killed, but rather is allowed to die when life-sustaining treatment is forgone.
A third explanation is that when life-sustaining treatment is forgone, there is no liability for assisted suicide because the kind of act required for assisting—"affirmative, assertive, proximate, direct conduct such as furnishing a gun, poison, knife or other instrumentality" (Bouvia v Superior Court, p. 306)—does not exist. This explanation is less successful if the crime to be charged is homicide because an omission to act when there is a duty to do so, as might be the case when the actor is a physician or other healthcare professional, will support liability for homicide equally well as an act would (Barber v. Superior Court).
The fourth explanation given is that there is no criminal liability because the patient is exercising the legal right to refuse treatment. It is clear that this is not an explanation at all but a restatement of the question. Nonetheless, it is probably the best explanation. No liability, either criminal or civil, should arise as a result of a patient's death from forgoing life-sustaining treatment if this occurs in the exercise of a legal right to refuse treatment either by the patient or someone with legal authority to speak on his behalf. To conclude otherwise would be, in effect, to eliminate the right itself.
Limits on incompetents' rights: countervailing state interests. That there is a legal right of incompetent patients to forgo treatment does not mean that there are no limitations on that right. The courts have identified a number of countervailing societal interests that, in theory at least, may be invoked in opposition to the forgoing of treatment. These interests, recited in virtually every legal opinion on forgoing life-sustaining treatment, are:
- the preservation of life;
- the prevention of suicide;
- the protection of third parties;
- the ethical integrity of the medical profession.
In practice, these societal interests have not been accorded significant weight if the patient is terminally ill or permanently unconscious (or if the patient is competent). As to the preservation of life, the prevailing legal view is that of the New Jersey Supreme Court in Quinlan: "the State's interest … weakens and the individual's right to privacy grows as the degree of bodily invasion increases and the prognosis dims."
The prevention of suicide is not a significant matter because of the virtually unanimous view that the forgoing of life-sustaining treatment is not suicide. However, in instances in which a person is very seriously disabled but not terminally ill or permanently unconscious, some courts are more reluctant to permit the forgoing of life support unless there is clear and convincing evidence of the patient's refusal of treatment in circumstances such as these, prior to losing decision making capacity (Martin v. Martin; In re Edna M.F.v. Eisenberg; Wendland v. Wendland).
As previously mentioned, one of the ways that courts found to circumvent the right of Jehovah's Witnesses to refuse blood transfusions was to invoke the societal interest in the protection of the children of these patients. In the case of minor children, however, the view is beginning to prevail that even though it is desirable for them to have not just one but two living parents, many other children do not, and in any event, to impose medical treatment on an individual in furtherance of this interest is to deny that person the choice of which risks to take, a choice assigned to adults—even those with minor children—in virtually all other circumstances. The interests of other close family members are just too attenuated to prevail in the face of the strong right of individuals to make their own medical choices.
Likewise, the judicial view is virtually unanimous that the forgoing of life-sustaining treatment does not offend the ethical integrity of the healthcare professions because these professions no longer hold the belief, if they ever did, that the sole goal of treatment is cure. In cases where cure is impossible or even highly unlikely, "the prevailing ethical practice seems to be to recognize that the dying are more often in need of comfort than treatment" (Superintendent of Belchertown State School v. Saikewicz, p. 426). And, returning to basics, "if the doctrines of informed consent and right of privacy have as their foundations the right to bodily integrity … and control of one's own fate, then those rights are superior to the institutional considerations" (Superintendent of Belchertown State School v. Saikewicz, p. 427).
Decision making procedures for incompetent patients. A central issue in Quinlan was the issue of how the right to refuse treatment is to be exercised when the patient is literally incapable of doing so. The two extremes that the court had available were to require that all such decisions be reviewed by a court, or that they take place in the privacy of the doctor-patient-family relationship without any oversight. Rather than choosing either extreme, the court settled on a middle ground: decisions to forgo life-sustaining treatment were ordinarily to be made in the privacy of the clinical setting without judicial involvement. However, to provide some safeguards against inappropriate decisions, the court mandated that the decision receive approval by a multi-disciplinary ethics committee. This was a novel approach adopted from a law review article written by a physician just one year earlier (Teel).
One serious difficulty with this approach was the assumption that hospitals had ethics committees when in fact very few did. However, by mandating the use of an ethics committee, the court set in motion a movement for most healthcare institutions to create them. Another problem was the fact that, although the committee was labeled an ethics committee, the role the court assigned to it was to confirm the patient's prognosis, a medical function for which such a multi-disciplinary committee was unsuited. The more fundamental criticism, however, was that ethics committees had no clear moral authority to make or even review decisions about forgoing life-sustaining treatment.
As a consequence of these difficulties, no other court or legislature mandated the use of ethics committees in end-of-life decision making. In the Saikewicz case, decided just a year after Quinlan, the Massachusetts Supreme Judicial Court required that such decisions always be made by courts, because
questions of life and death seem to us to require the process of detached but passionate investigation and decision that forms the ideal on which the judicial branch of government was created. Achieving this ideal is our responsibility and that of the lower court, and is not to be entrusted to any other group purporting to represent the "morality and conscience of our society," no matter how highly motivated or impressively constituted. (Superintendent of Belchertown State School v. Saikewicz, p. 435)
However, practical—and some philosophical—considerations ultimately won out. No other law-making body concurred in this position and within just two years, the Massachusetts court itself backed away from it. Requiring judicial review of all decisions to forgo life-sustaining treatment is too cumbersome, slow, and time-consuming. More fundamentally, it creates a tremendous intrusion by instruments of the state into the very private process of dying.
Thus, after a very heated debate, a consensus developed that all procedural aspects of the decision making process—the determination of whether or not the patient lacks decision making capacity, the designation of a surrogate decision maker, and any review of the decision about forgoing treatment—should ordinarily be made in the clinical setting. An ethics committee may play a role if the parties choose to have it do so, but it is not legally mandated. And in situations in which there is intractable disagreement among participants in the decision-making process about administering or forgoing treatment, or if there is a serious conflict of interest, the courts are available to adjudicate the issue.
Decision making standards for incompetent patients. One of the central tenets of the consensus concerns the standard by which a surrogate may make a decision for a patient who lacks decision-making capacity. In theory, surrogates could be empowered to exercise complete discretion—to make whatever decision they wish, for whatever reason they wish. Rather than according such unfettered discretion, courts have sought guidance from the values in which medical decision making is grounded, the primary one being autonomy. When competent patients make medical decisions for themselves, they are guided by their own values and goals. On the assumption that decision making for incompetent patients should be similarly guided, the courts have invoked autonomy as the guiding principle for decision making by surrogates as well.
The difficulty, of course, is that when the patient lacks decision-making capacity—and in many instances lacks even rudimentary communication capacity—the patient's values and goals cannot be determined contemporaneously. To honor and implement autonomy, the courts have mandated that surrogates attempt to determine what the patient would have decided if the patient were capable of deciding. Some believe, however, that this is an elusive and ultimately futile search and that for individuals for whom autonomy is lost, decision making must be based on other values (Dresser; Harmon).
The predominant standard that has evolved and been adopted is referred to as the substituted judgment standard. It requires the surrogate to determine what the patient would have wanted had the patient actually given thought to the matter—in other words, the patient's probable wishes.
A small number of courts (most notably, the New York Court of Appeals) reject the substituted judgment standard altogether and insist that decision making for patients who lack decision-making capacity must be made on the basis of their actual wishes, that the evidence adduced to establish their wishes be clear and convincing, and that the statements made by the patient have been uttered under "solemn" circumstances and not merely be casual or offhand remarks, such as those made in reaction to the treatment of another (In re Westchester County Medical Ctr. [O'Connor]). Those adhering to this standard are preoccupied by the possibility of an erroneous decision to allow a patient to die—that is, a decision that does not reflect the patient's own wishes—and that in the case of uncertainty, it is better to err on the side of keeping the patient alive.
The opposing view recognizes that prolonging life can entail undesired effects as well, as expressed by U.S. Supreme Court Justice William Brennan in a dissenting opinion in the Cruzan case:
Dying is personal. And it is profound. For many, the thought of an ignoble end, steeped in decay, is abhorrent. A quiet, proud death, bodily integrity intact, is a matter of extreme consequence.… Such conditions are, for many, humiliating to contemplate, as is visiting a prolonged and anguished vigil on one's parents, spouse, and children. A long, drawn-out death can have a debilitating effect on family members.… For some, the idea of being remembered in their persistent vegetative states rather than as they were before their illness or accident may be very disturbing.
Sentiments such as these have motivated other courts and the President's Commission to permit surrogates to forgo life-sustaining treatment in the absence of any information concerning the wishes of the patient, on the basis of the best interests standard. These authorities take the position that while autonomy is the predominant value, it is not the only one, and that when autonomy cannot be effectuated because of ignorance of the patient's wishes, the patient's welfare must govern instead. In such a case, the surrogate is obligated to do what is best for the patient, which entails a weighing of the benefits of continued treatment against its burdens. If the burdens predominate, the surrogate may authorize the termination of treatment (Barber v. Superior Court; In re Conroy).
Family members as surrogates for incompetent patients. An important corollary of the views that decisions about life-sustaining treatment should ordinarily be made in the clinical setting without outside supervision, and that the patient's own views should govern decision making, is the presumption that close family members are the appropriate persons to speak for the patient. When a decision needs to be made whether to administer or forgo life-sustaining medical treatment, physicians should turn to close family members, who have moral and legal authorization to decide for the patient, even if they have not been appointed as guardians by a court or designated by the patient to be their spokesperson. This presumption is based on the belief that close family members best know the patient's actual or probable wishes (substituted judgment) and when they do not are most likely to act for the patient's welfare (best interests).
Advance directives in decision making for incompetent patients. Because of the centrality of the patient's wishes in decision making and the inability to ascertain those wishes in precisely the instances in which that information is most needed, the use of advance directives in endof-life decision making has taken on a very high degree of importance. An advance directive is a device by which competent individuals make their wishes known about treatment if, at some future time, they should lack decisionmaking capacity. This is best done through a formal written instrument which either gives instructions about future medical treatment (referred to as a living will), appoints another person (agent or proxy) to make such decisions (referred to as a health care power of attorney), or both.
In the wake of the Quinlan and similar judicial decisions, it became readily apparent that it would be useful, if not essential, for individuals to have an advance directive. In 1976, the same year that Quinlan was decided, California became the first state to enact legislation to provide a firm legal basis to assure the validity of advance directives. For many years, there was some uncertainty about the validity of an advance directive without such legislation. By the end of the twentieth century, however, every state had enacted some type of advance directive legislation.
Some uncertainty continues to surround the use of advance directives. Advance directive statutes can be very limiting. Perhaps the most restrictive requirement is that before an advance directive becomes effective, the patient must be in a terminal condition or permanently unconscious. However, some individuals may wish to engage in advance healthcare planning for other conditions that they find particularly troublesome, such as dementia. It is still open to question in law, at least in some states, as to whether such "nonconforming" advance directives are legally enforceable.
The theory of healthcare decision making, based as it is on individual autonomy, would seem to allow individuals to issue instructions—especially instructions to forgo life-sustaining treatment, such as feeding tubes—to cover such situations. However, a highly defensible position, as stated more or less explicitly in the statutes themselves, is that the statutes do not create legal rights to refuse (or consent) to healthcare, but merely provide a mechanism for doing so. The Uniform Health Care Decisions Act, a model law drafted by the National Council of Commissioners on Uniform State Laws, lacks the restrictions found in most advance directive statutes, but must be adopted in an individual state before it has the force of law, and so far it has not been.
Perhaps the largest obstacle to the efficacy of advance directives—to which the previously-mentioned PSDA was seen as a solution—is that most people do not have them, either out of ignorance of what they are or of their importance, or because of an aversion to planning for death, exhibited also by the failure of many people to buy life insurance or write wills.
Forgoing Artificial Nutrition and Hydration
In the Quinlan case, the legal question was whether Karen Quinlan could be allowed to die from the withdrawal of the ventilator that was keeping her alive. After the New Jersey Supreme Court answered this question in the affirmative, and her physicians gradually withdrew her ventilatory support, she continued breathing on her own, contrary to the medical assumption on which the case had been decided. Thereafter, she was kept alive by a feeding tube, raising the question of whether her parents could authorize the termination of the feeding tube as well.
Because they did not seek to do so, this question remained unanswered until 1983, when it arose in the California case of Barber v. Superior Court. In this case, physicians were subjected to criminal prosecution for the termination of a feeding tube from a patient diagnosed, like Quinlan, as being in a persistent vegetative state. This case, for the first time in a judicial forum, raised the question of whether it is permissible to withhold or withdraw nutrition and hydration. It is also the first of only two criminal prosecutions that have ever occurred for forgoing life-sustaining treatment with the consent of someone legally authorized to make such decisions for the patient.
Opponents of permitting the forgoing of nutrition and hydration usually raise two major objections. First, nutrition and hydration is not a medical procedure but basic sustenance, and thus should not be treated the same as, for example, a ventilator. In this view, one is no more morally entitled to remove nutrition and hydration from an incompetent patient than from a young child who cannot provide itself with nourishment. Perhaps the best legal rejoinder to this claim was issued in the Cruzan case by U.S. Supreme Court Justice Sandra Day O'Connor, who addressed the question by declining to answer it. Rather than entering into the debate about whether nutrition and hydration provided by a feeding tube was or was not a form of medical treatment, she observed that regardless of how it is characterized, when provided to an unwilling patient it constitutes a restraint on individual liberty. Since it is certainly contrary to individual autonomy to force feed a competent patient, it is contrary to the individual autonomy of an incompetent patient as well, when the patient's surrogate refuses it based on the patient's previously expressed wishes.
The second objection is that death resulting from the forgoing of nutrition and hydration amounts to killing, rather than letting nature take its course, and is therefore unlawful and immoral. The standard rejoinder to this is that there is no difference between termination of nutrition and hydration and other treatments. When a ventilator is terminated, the patient dies because his injury or illness prevents him from breathing and that is the cause of death. Similarly, feeding tubes are placed in, and only removed from, patients whose injury or illness prevents them from eating in the ordinary way, and thus it is the injury or illness, rather than the actions of the individual who removes the feeding tube, which is the cause of death.
Actively Hastening Death
The distinction between passively and actively hastening death has been central to the development of the consensus about end-of-life decision making. The former is equated with forgoing life-sustaining treatment, which includes both withholding treatment not yet begun and withdrawing treatment that is in progress. Actively hastening death consists of both active euthanasia (sometimes referred to as mercy killing) and assisted suicide. Active euthanasia is the direct ending of a human life, by a lethal injection, for example, whereas assisted suicide is defined as giving another the means by which that person ends his or her own life, such as providing a prescription for a lethal dose of medication which the person then ingests. Both legal and ethical thought have, for the most part, drawn a bright line between passively and actively hastening death, holding the former to be both morally and legally licit and condemning the latter as killing, and thus immoral and illegal.
The reasons for viewing passively hastening death as not constituting a crime were previously discussed. By contrast, when death is actively hastened—whether by the patient with assistance from another (assisted suicide) or directly by another (active euthanasia)—it is usually said that criminal liability cannot be avoided because all of the elements of a crime—act, intent, causation, consequence—are present. In the case of active euthanasia, to wit, the actor commits an act, with the intent of bringing about the patient's death, which is the cause of the patient's death.
From a legal, political, and policy perspective, this reasoning has been essential to the development of the consensus. It was simply not possible politically for legislatures or courts to have characterized forgoing life-sustaining treatment as killing and then to have attempted somehow to permit it. It was far simpler and more palatable to the public and to judges themselves to legitimate passively hastening death by denying that it was killing. Similarly, it would simply have been too great a leap from existing mores to legitimate actively hastening death, had any judge or legislator even wished to do so, because it involves practices that traditionally have been viewed as killing, even when done with merciful motives.
With the passage of time and increasing clamor for the legalization of actively hastening death—or at least for the legalization of suicide assisted by a physician—the weaknesses in the reasoning used to distinguish passively and actively hastening death have gradually become more apparent. Nonetheless, with a few exceptions both in the United States and other countries, legal barriers to actively hastening death remain.
Beyond the Consensus: The Legalization of Actively Hastening Death
Although the bright line between passively and actively hastening death is part of the bedrock on which the ethical, legal, and policy consensus about forgoing life-sustaining treatment has been grounded, it has not been immune from challenge. These challenges have come in writings by ethicists, in litigation, and in legislation.
It has occasionally been asserted that a physician is prohibited by law and ethics from undertaking an act that would end a patient's life because it constitutes killing, but is permitted to omit treating a patient because he or she is merely allowing nature to take its course and the patient to die. Both the courts and public policy makers (President's Commission) have been quick to correct this misunderstanding. Certainly taking an affirmative act to end the patient's life, such as giving the patient a lethal injection, is a legal wrong; omitting is also a legal wrong if there is a duty to act, and a physician is under a duty to treat unless excused from doing so by the patient, the patient's surrogate, or a court. Thus the categorical distinction between wrongness of acting and rightness of omitting is fallacious.
The same is true of withholding and withdrawing treatment. It has sometimes been thought that withdrawing treatment is a wrong because it involves an act, but withholding treatment is legally and ethically acceptable because it involves an omission. Again, if there is a duty to act, withholding is a legal wrong, unless properly excused. However, withdrawing treatment, even though it involves an act, is not considered killing because, unlike the administration of a lethal substance to the patient, withdrawing treatment merely allows nature to take its course. On policy grounds, the distinction between withdrawing and withholding is an especially pernicious one, because permitting treatment to be withheld but not withdrawn would discourage physicians from trying to treat some patients thought to be hopelessly ill out of fear that once started, treatment could not later be stopped, even if it were ineffective in reversing the patient's condition.
While the weaknesses in the reasoning that supports passively hastening death but rejects actively hastening death have long been apparent (Rachels), they have been papered over by the courts and justified by policy analysts when this has seemed necessary to achieve what some see as the desirable result of not legitimating actively hastening death. Some recognize the desirability of permitting actively hastening death in individual cases but oppose legalization, preferring to leave it to the private actions of doctors and patients, and to allow the legal system to exercise discretion in not prosecuting those truly merciful cases that come to its attention. The difficulty with this approach is that because the legal outcome for those who provide assistance or engage in mercy killing is so uncertain and so potentially serious, few will be willing to take the chance. Consequently, actively hastened death will not, in fact, be available to those whose conditions may warrant it, or else will be available on an arbitrary basis.
Apart from those who see actively hastening death as killing and condemn all killing as wrong, the primary concern seems to be a practical one. If actively hastening death becomes legally acceptable, there will be no way to draw lines to confine it to those for whom it might be appropriate, on both policy and ethical grounds, and it will become susceptible to widespread abuse through incremental extensions of existing accepted practices. For instance, if physician-assisted suicide becomes legal, what reasoning can confine actively hastening death to those who can self-administer the instrumentality of death? There will be individuals whose claims to actively hastening death are equally high, but who are no longer able to end their own life and thus must have someone end it for them. If actively hastening death is then extended to this group, there will be individuals who lose their decision-making capacity before being able to have their lives ended. Should not, in the name of equity, individuals be allowed to execute an advance directive requesting that their deaths be actively hastened when they are no longer able to do so themselves, and when they meet the conditions specified in the advance directive? And if this becomes permissible, then surely an activelyhastened death will be permissible for individuals whose wishes were never committed to paper but can be intuited by relatives using the substituted judgment standard. And if such evidence is lacking, then perhaps the best interests standard should be applied to permit an actively hastened death as it sometimes is to allow for passively hastened death. While this may not be the bottom of the proverbial slippery slope, it is far enough to demonstrate to many the lack of wisdom of ever stepping onto the slope by legitimating any form of actively-hastened death.
Proponents of taking the first step, however, believe first that it is merely a logical extension of the same process that recognized the legality and ethicality of passivelyhastened death. Further, they believe that taking one step, or even more than one, does not necessarily entail a commitment to taking the next step. Experience and policy considerations may suggest limitations even where logic might dictate otherwise. Finally, proponents point to the inequity of permitting the terminally ill who depend on life-sustaining medical treatment to have their lives ended, but not permitting the same merciful release from suffering to the terminally ill who may have an equal claim but who happen not to be dependent on life-sustaining medical treatment.
Legalization of Physician-Assisted Suicide
Events began to overtake logic in the 1990s in the United States. Efforts to legalize physician-assisted suicide through voter initiatives took place in five states; all but one failed to win passage. Oregon voters approved a ballot initiative in 1994, which did not go into effect until 1997 because of efforts to overturn it in the courts and through a second voter initiative. Bills have been introduced into the legislatures of many states to legalize physician-assisted suicide, but none received very much support until 2002 when the Hawaii legislature narrowly defeated such an effort.
Several lawsuits have been filed seeking to declare unconstitutional state laws making assisted suicide a crime. Lower federal courts invalidated such laws in Washington state and New York state, at least when the person seeking assistance in dying was competent and terminally ill, and when the person rendering the assistance was a licensed physician. The two cases, Washington v. Glucksberg and Vacco v. Quill, were reversed by the United States Supreme Court in 1997. The Court held that there is no federal constitutional right to physician-assisted suicide—that states are constitutionally permitted to make assisted suicide a crime, but it is also constitutionally permissible for a state to legalize physician-assisted suicide, as Oregon had done.
All of the discussion of legalizing actively hastening death in the 1990s took place against the backdrop of the activities of Dr. Jack Kevorkian, a retired physician who publicly announced that he would aid individuals in ending their lives. He publicized many of his cases—totaling well in excess of one hundred until he was imprisoned in 1999. The high visibility of his activities was taken as a defiant invitation to legal authorities to file criminal charges against him on several occasions, but none were successful until he went beyond aiding patients' deaths and administered a lethal substance to a terminally ill man and then gave a videotape of the event to a national television network, where it was publicly broadcast. He was then indicted for murder, tried, and convicted.
Another important component in discussions of legalizing actively hastening death has been the experience with the open practice of active euthanasia in the Netherlands since the early 1970s. Until 2001, voluntary active euthanasia by physicians for competent terminally ill patients has been formally illegal, but actively practiced and not prosecuted by the authorities—if the physician complied with guidelines proposed by the Minister of Justice and the Secretary of Health—and supported by the Royal Dutch Medical Association. In that year, the Netherlands formally legalized voluntary active euthanasia along lines quite similar to the informal practice that had previously prevailed.
Dr. Kevorkian's activities were widely viewed as highly irresponsible by both supporters and opponents of the legalization of actively hastening death. Nonetheless, most admit that his activities—as well as the developments in the Netherlands—did have the consequence of helping to open public debate on this issue. One of the undoubtedly salutary consequences of the public debate has been an acknowledgement and realization that the medical profession has been laggard in providing adequate palliative care—especially pain relief—to terminally ill individuals, and that there has been inadequate education of physicians about these issues. In the view of many, improvements in these areas are not only necessary to relieve the suffering of the dying, but they may also go a long way in derailing the legalization of actively hastening death. Others, however, see these two approaches as complementary, rather than working in opposition to each other.
THE OREGON EXPERIENCE WITH PHYSICIAN-ASSISTED SUICIDE. Physician-assisted suicide was legalized by a voter initiative in Oregon in 1994 and went into effect in November 1997. The law does not actually refer to physician-assisted suicide; the title of the law is the Oregon Death with Dignity Act, but in fact physician-assisted suicide—or, as some prefer to call it, physician aid-in-dying—is the practice that is made legal. The law permits a competent terminally ill patient to have a physician prescribe a lethal dose of medication for the patient to self-administer; it does not permit the physician or anyone else to administer the medication (active euthanasia).
In the first four years of its operation, 140 (2001: 44; 2000: 39; 1999: 33; 1998: 24) people obtained lethal prescriptions from their doctors and 89 (2001: 19; 2000: 27; 1999: 27; 1998: 16) used them to end their lives. The remainder died without using the prescriptions. The death rate for those using a lethal prescription varied between six and nine per ten thousand, which is in the same range as the death rate of individuals who die otherwise. Most patients suffered from cancer. The three most commonly mentioned reasons that patients wanted to end their lives were loss of autonomy, a decreasing ability to participate in activities that made life enjoyable, and losing control of bodily functions. The overwhelming proportion of patients died at home.
Fears that people who would avail themselves of physician-assisted suicide would do so because of lack of alternatives were not borne out by experience. More than three-fourths of patients were also enrolled in a hospice care program, and all had some form of health insurance. Likewise, patients who used physician-assisted suicide were similar in terms of age and race to those who died without using it. Patients who used physician-assisted suicide were also better educated. However, more women died in this manner than men with comparable disease, and those who died in this way were more likely to be divorced and possibly not have as good family support systems (Oregon Department of Human Services).
Opponents of the legalization of physician-assisted suicide in Oregon have mounted several efforts to have the law invalidated. The first was a lawsuit challenging the constitutionality of the law, which delayed its implementation for three years. While this lawsuit was pending, opponents were able to put an initiative to overturn the original legalization on the Oregon ballot in 1997. Although the original approval was by a 51 percent to 49 percent margin, Oregon voters underscored their approval of the physician-assisted suicide legalization by refusing to repeal the law by a 60 percent to 40 percent margin. However, shortly after the law went into effect, the director of the federal Drug Enforcement Administration (DEA) ruled that it was a violation of the federal controlled substances act for doctors to use controlled substances in the implementation of the Oregon law. This was quickly reversed by the U.S. Attorney General Janet Reno. Bills were then introduced in two sessions of Congress to prevent the use of controlled substances in physician-assisted suicide, but neither was enacted. With a change of administration in 2000, Attorney General John Ashcroft reversed the policy of the former Attorney General and banned the use of controlled substances in physician-assisted suicide. A lawsuit was then filed to prevent implementation of the Attorney General's order, and a federal court ruled that the order was illegal and could not be implemented.
Beyond the Consensus: Autonomy Turned Upside Down
Although patient autonomy is the foundation on which the consensus around end-of-life decision making has been built, autonomy has encountered a serious challenge in the form of so-called futility cases. These cases reverse the usual right-to-die cases. In those cases, competent patients or family members have determined that further treatment is unwarranted and challenged physicians who have wanted to continue to provide treatment. In futility cases, physicians and other healthcare professionals conclude that further treatment is unwarranted, but are met by resistance from competent patients—or, more likely, family members of incompetent patients—who insist that treatment be continued. Despite the raft of literature on this subject, there has been very little contribution to resolution of this debate by either courts or legislatures. Most likely, situations of this sort are eventually resolved in the clinical setting either by the patient's death, for the patients involved are usually very critically ill, or by a realization by family members over time that further treatment will not improve the patient's condition.
Future Challenges for Policy Makers, Legislators, and Health Professionals
The consensus about forgoing life-sustaining treatment has become well-accepted in public policy, law, and clinical practice. Despite the fact that half of the states have not yet experienced a major legal case, it does not seem likely that these states will make major changes in the consensus.
The same sort of stability is not likely to exist with respect to actively hastening death. Coming decades are likely to witness continuing challenges to the prohibition on assisted suicide in the courts, in state legislatures, and through ballot initiatives. Acceptance in law is likely to be very gradual, if it occurs at all. However, the influence of the movement to legalize actively hastening death will continue to be felt in improved efforts at providing alternatives in the form of hospice care, palliative care, and the more judicious use of pain relief medications, even if they might hasten death.
SEE ALSO: Autonomy; Christianity, Bioethics in; Competence; Conscience, Rights of; Death; Death, Definition and Determination of; Dementia; Harm; Homicide; Informed Consent; Islam, Bioethics in; Judaism, Bioethics in; Law and Bioethics; Law and Morality; Life, Quality of; Medical Ethics, History of Europe, Contemporary Period: The Benelux Countries; Medical Codes and Oaths; Pain and Suffering; Palliative Care and Hospice; Patients' Rights; Professional-Patient Relationship; Suicide; Virtue and Character
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