! SPECIALARTICLE
Securing Patients’ Right to Refuse Medical Care: In Praise of the Cruzm Decision EZEKIEL J. EMANUEL, M.D., Ph.D., BOSTON, Massachusetts
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n the months since the Cruzarz decision [l], many commentators have decried it as a “tragedy” because (1) it did not end Nancy Cruzan’s personal misfortune, (2) it permits too much state regulation of the right-to-die, and (3) it implies the Supreme Court will further restrict other constitutional rights such as abortion [2,3]. This view is incorrect. In Cruzun, the Supreme Court resolved many of the controversies surrounding the “right-to-die” that have persisted since the Quinlan decision [4] and thereby actually strengthened patient rights. To explain the importance of the Cruzan decision, this article will outline the legal history and background of the case, the Supreme Court’s ruling, and its implications for physicians in withdrawing medical care.
THE QU/NDl/V FRAMEWORK In the Quinlan case, the New Jersey Supreme Court delineated a legal and ethical framework for terminating medical care [5] that with elaboration, notably in Suikewicz [6] and Conroy [7], has remained the guiding standard for all subsequent “right-to-die” cases. It is helpful to summarize the four elements of this framework and the controversies that surround them. First, the New Jersey Supreme Court and other courts have claimed that patients have a general constitutional right to privacy that encompasses the more specific right to refuse medical care [&lo]. Other courts have sought to derive the right to refuse medical care from the common-law right of bodily integrity that permits an adult to “determine what should be done with his own body” [11,12]. Courts have recognized this right for competent as well as incompetent patients, including those who never explicitly specified preferences regarding medical care. Finally, courts have indicated that in theory this right is not absolute and might be limited by at least four countervailing interests: (1) the preservation of life, (2) the prevention of suicide, (3) the protection of third parties, and (4) the preservaFrom the Dana-Farber Cancer Institute, Boston, Massachusetts. Requests for reprints should be addressed to Ezekiel J. Emanuel, M.D., Ph.D., Dana-Farber Cancer Institute, 44 Binney Street, Boston, Massachusetts 02115. Manuscript submitted December 12. 1990, and accepted in revised form June 6. 1991.
tion of the integrity of the medical profession. In practice, however, such interests have almost never overridden this right [5]. The United States Supreme Court had refused to hear the Quinlun case on appeal. Many suspected that the Reagan-appointed conservative majority would avoid broadly interpreting the implicit constitutional right of privacy to include the right to refuse medical care [13]. Indeed, the Supreme Court suggested this in a 1986 case when it wrote: Nor are we inclined to take a more expansive view of our authority to discover new fundamental rights. . . . There should be, therefore, great resistance to expand the substantive reach of those clauses, particularly if it requires redefining the category of rights deemed to be fundamental [14]. More importantly, the ability to recognize the refusal of medical care by incompetent patients who provided no prior indication of their preferences has been questioned. How can such patients who irreversibly lack the ability to make decisions have a right of privacy [5]? As Laurence Tribe, one the nation’s most prominent and liberal constitutional lawyers, normally hostile to the Rehnquist court, put it: Given the fact that these patients are irreversibly comatose or in a chronic vegetative state, attributing “rights” to these patients at all is somewhat problematic. . . . [T]he task of giving content to the notion that they have rights, in the face of the recognition that they could make no decisions about how to exercise any such right, remains a difficult one [El. Second, the Quinlun decision stated that the right to refuse medical care extended to life-sustaining treatments such as respirators. Subsequently, courts have permitted the termination of all types of medical interventions and, in the Conroy case, the New Jersey Supreme Court first included artificial nutrition and hydration as a medical treatment that could be withheld or withdrawn [5,7]. The issue of whether artificial nutrition and hydration should be considered medical treatments that can be terminated or basic elements of care that cannot be withheld has been controversial and frequently adjudicated before state courts and the subject of legislation [16-241. The third element of the framework relates to who decides for incompetent patients. For incomMarch
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would suffer “recurring, unavoidable and severe pain” [7]. This pain standard has been severely attacked [5,7,34]. Consensus has eluded every other proposed “objective” standard.
petent patients who were once competent, clear and explicit statements about desired medical care, whether living wills or oral statements expressed in reflective conversations, have been deemed legal and binding [5,17]. Recently, states have also enacted, and courts have recognized, laws that permit the assignment of durable power of attorney for health care decision-making [25,26]. For incompetent patients who could not exercise their own “right-to-die” and who neither left explicit statements nor specified a surrogate decision-maker, most courts and legislatures have agreed with QuinZan that the family should serve as the surrogate with “full power to make decisions.” Some states have established procedures to ensure that the surrogate does not abuse his power to exercise the incompetent patient’s right [7]. The fourth aspect of the framework involves the criteria for justifying the surrogate’s decision to terminate care of incompetent patients. While the Quinlan court never delineated a standard that surrogates should utilize in deciding whether to terminate an intervention, they did view Karen Quinlan’s respirator as “extraordinary” care. Over the subsequent 15 years, however, the ordinary/extraorclinary distinction has been rejected as having “too many conflicting meanings” to be a useful guide [5,27]. Instead, many courts have followed the Saikewicz decision [6], adopting the “substituted judgment” standard that requires the surrogate decision-maker to “ascertain the incompetent person’s actual interests and preferences,” making a decision that “would be made by the incompetent person if that person were competent” [28]. The “substituted judgment” standard, however, has been criticized as “unrealistic” [29], a “fiction,” even a “cruel charade” [5,22,28]. For patients who have always been incompetent and others for whom no family member is familiar with the incompetent patient’s views, “substituted judgment” cannot be given [ 18,301. More generally, lingering doubts about the accuracy of one person’s assessment of another person’s preferences, no matter how pure the motives and intimate the relationship, always exist [31,32]. These theoretic doubts have been substantiated by empiric research suggesting that physicians and even spouses of many decades cannot accurately predict a patient’s preferences regarding life-sustaining interventions [33]. These doubts have led some to urge a more “objective” determination of when care should be terminated from incompetent patients. In the Conroy case, for instance, the New Jersey court suggested that pain serve as an “objective” criterion so that life-sustaining treatments could be terminated if the patient
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THE MISSOURISUPREMECOURT’S CRWAN DECISION The facts of the Cruzan case are straightforward and almost identical to those of Quinlan [1,4]. On January 11,1983, at 12~50 AM, Nancy Cruzan, then 26 years old, was driving home, skidded, and overturned in a field. She was thrown 20 to 35 feet from her car. About 20 minutes after the accident, paramedics arrived and began resuscitative efforts. It was suspected that she had suffered irreversible anoxic brain damage, and after a month or so it became clear that she was in a persistent vegetative state. With the consent of her (then) husband, a gastrostomy tube was placed for feeding on February 3, 1983. Three years later, in the fall of 1986, Nancy Cruzan’s parents asked a judge to permit the discontinuation of the tube feedings. This request was refused, although another judge subsequently approved the withdrawal of feedings. The Missouri Attorney General appealed the trial court judge’s decision. Like many young people, Nancy Cruzan never completed an advance care document and never designated a proxy decision-maker. A housemate and friend testified that about a year before the accident, she and Nancy had discussed the death of relatives. Nancy was reported to have said that “she would never want to live [in a vegetative state] because if she couldn’t be normal or even, you know, like half way, and do things for [herlself . . . she didn’t want to live” [l]. In its ruling, the Missouri Supreme Court first questioned whether incompetent patients who left no clear view of their preferences had the right to refuse medical care [35]. In addition, the court argued that even if incompetent patients had such a right, the countervailing interest in preserving life may prevail in the absence of a clear expression of the patient’s wishes. Second, the Missouri Supreme Court questioned whether artificial nutrition and hydration are medical interventions that could be terminated. While the Missouri justices labeled this issue a “semantic dilemma” that was “legally irrelevant,” they did note that “common sense tells us that food and water a0 not treat an illness” [7]. Consequently, many interpreted the decision as precluding their discontinuation. Third, while the Missouri Supreme Court did not challenge the appointment of the family as Nancy’s
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surrogate, it did challenge the fourth element of the Quinlalz framework by limiting the discretion of the surrogate in exercising “substituted judgment.” The justices argued that her parents could exercise her right to refuse medical care only if there existed either a formal living will or some other “clear and convincing” statement to direct their choices. The court judged her statement as insufficiently clear and convincing. Ironically, in mandating this “clear and convincing” standard, the Missouri court was not expounding its own novel standards but simply following a precedent established by the New Jersey Supreme Court in the Conroy and Jobes rulings [6,18]. In these cases, the New Jersey justices maintained that statements regarding termination of care must satisfy the “clear and convincing” standard by being carefully considered, specific positions maintained over a number of years. “Offhand remarks,” “informally expressed reactions,” or “remote, general, spontaneous [comments] made in casual circumstances” are, according to the New Jersey Supreme Court, unreliable guides to a patient’s true preference [18]. Indeed, almost anticipating the circumstances in Crumn, the New Jersey justices wrote: An offhand remark about not wanting to live under certain circumstances made by a person when young and in the peak of health would not in itself constitute clear proof twenty years later that he would want life-sustaining treatment withheld under those circumstances [6]. Following this standard in the Jobes case, the New Jersey Supreme Court dismissed comments attributed to Ms. Jobes approving of the termination of care from incompetent patients, including comments related to the case of Karen Quinlan, as “not sufficiently ‘clear and convincing’ ” to be used. The New Jersey Supreme Court nevertheless did permit the termination of Ms. Jobes’s artificial feedings by arguing that the patient’s family best understand the patient’s personal values and can exercise the incompetent patient’s rights to refuse medical care [18]. The Missouri Supreme Court departed from their New Jersey counterpart, ruling that surrogates could not exercise substituted judgment in the absence of “clear and convincing” statements because to do so would incur “arbitrary decisionmaking.”
the right-to-die that apply to all patients henceforth. First, by 8 to 1, the justices endorsed the notion that competent patients have a constitutionally protected right to refuse medical care. Chief Justice Rehnquist, writing for the majority, refused to base this right on the “penumbral” but not explicit right of privacy or on the common-law right of bodily integrity. Rather, to make this right unassailable, Justice Rehnquist found an explicit constitutional basis for it as a specific extension of the 14th Amendment’s provision that no state shall “deprive any person of life, liberty, or property without due process of law” [l]. Only Justice Scalia asserted that “the Constitution has nothing to say about the subject. To raise up a constitutional right here we would have to create out of nothing” [l]. Those who claim that the majority did not actually recognize a competent patient’s constitutional right to refuse medical care but only assumed it for the sake of argument [3] have distorted the decision. Indeed this assessment does not agree with how the justices viewed their decision. Justice O’Connor states that she believes the court endorsed this constitutional right: The liberty guaranteed by the Due Process Clause must protect, if it protects anything, an individual’s deeply personal decision to reject medical treatment,
THE U.S. SUPREMECOURT’SDECISION
Consequently, the majority recognized a difference between the right of competent patients that is constitutionally guaranteed and unassailable and the right of incompetent patients. It suggests that incompetent patients have the right to refuse medical
In its Cruzan ruling, the U.S. Supreme Court addressed and resolved most of these controversies. Indeed, the 5-4 vote disguises broad agreement among the justices on general principles regarding
including the artificial delivery of food and water [l].
Similarly, Justice Stevens in dissent believes his colleagues have recognized this right: [The majority errs] despite endorsing [the proposition] that . . . a competent individual’s decision to refuse life-sustaining medical procedures is an aspect of liberty protected by the Due Process Clause of the Fourteenth Amendment [l].
However, the about extending petent patients. ascribing rights tients expressed quist wondered cannot exercise a right:
majority was much more hesitant this constitutional right to incomIn words that echo the doubts of to permanently incompetent paby the liberal Tribe, Justice Rehnwhether incompetent patients who their right of privacy can have such
The difficulty with petitioners’ claim is that in a sense it begs the question: an incompetent person is not able to make an informed and voluntary choice to exercise a hypothetical right to refuse treatment or any other right. Such a “right” must be exercised for her, if at all, by some sort of surrogate [l].
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guards, surreptitiously
care; however, the extent of this right may be qualified by states if the wishes of the incompetent are not clearly known. Second, the Supreme Court also stated that artificial nutrition and hydration are medical treatments that can be withdrawn. It recognized, in the words of Justice O’Connor, that “artificial feedings cannot be distinguished from other forms of medical treatment” [l]. Third, the justices passed over the issue of who should serve as surrogate, since both the majority and minority implied that “loved ones” are appropriate proxies. More importantly, while the Supreme Court did not directly address the issue of whether states must respect the surrogate’s decision in exercising an incompetent patient’s right to refuse medical care, Justice O’Connor made quite clear that in her view, states probably have a constitutional obligation to enforce a formally designated proxy’s decision because only in this way can they respect the patient’s right to refuse medical care.
words, because the incompetent patient cannot exercise his own right, the Constitution “does not require a State to accept the ‘substituted judgment’ of close family members in the absence of substantial proof that their views reflect the patient’s” [l]. Implicitly, the majority maintained that the surrogate could only be viewed as exercising the incompetent patient’s right if there was some check to ensure that the decision reflected
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that all states implement
Missouri’s
“heightened
evidentiary standard.” The Supreme Court merely said that a requirement for “clear and convincing” evidence of an incompetent’s wishes did not violate the Constitution and did not pose an unreasonable burden on the exercise of a fundamental right. In her opinion concurring with the majority, Justice O’Connor emphasized this point:
If adopted, and a majority of justices seem to concur, such a view would make the appointment of a durable power of attorney for health care decisions a constitutional right, whether states have statutes explicitly authorizing proxies for health care decisions or not. Fourth, the disagreement between the majority and the minority revolved around the latitude that the incompetent’s surrogate should have in exercising the right to refuse medical care and that the state should have in restricting a surrogate in the absence of clear indication of the incompetent’s wishes. In particular, while the justices agreed that there must be some safeguards to ensure that the incompetent’s surrogate makes the correct decision, their disagreement centered on the nature and extent of the safeguards permitted by the Constitution; and this disagreement turned on the evidence states would be permitted to require in support of a surrogate’s decision. In the minority’s view, Missouri’s requirement that the surrogate justify his decision by citing either an advance care document or some other “clear and convincing” evidence of Nancy Cruzan’s view is a substantial procedural “obstacle to the exercise of a fundamental right” and is therefore unconstitutional. Indeed, the implication was that Missouri was abusing its power to define procedural safe-
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the incompetent’s
erences rather than the surrogate’s wishes, no matter how lovingly expressed. Indeed without such a check, it seemed illogical to claim that the incompetent’s right was being exercised, rather than the surrogate’s right over the incompetent. Consequently, while incompetent patients have a constitutional right to refuse medical care, in the absence of an advance care document or other “clear and convincing” evidence, states may scrutinize family decisions to ensure they do reflect the patient’s wishes. Importantly, the majority did not mandate
[T]he Court does not today decide the issue whether a State must also give effect to the decisions of a surrogate decisionmaker. . . . In my view, such a duty may well be constitutionally required to protect the patient’s liberty interest in refusing medical treatment [l].
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imposing its view on Nancy
Cruzan and overriding her constitutional right. The majority disagreed. In Justice Rehnquist’s
[Today’s decision does not] prevent States from developing other approaches for protecting an incompetent individual’s liberty interest in refusing medical treatment. . . . Today we decide only that one State’s practice does not violate the Constitution; the more challenging task of crafting appropriate procedures for safeguarding incompetents’ liberty interests is entrusted to the “laboratory” of the States [I]. Thus, it can be said that the majority and minori-
ty disagreed on a fairly small point, namely whether Missouri’s requirement that a surrogate exercise substituted judgment in refusing medical care for an incompetent patient only when supported by “clear and convincing” evidence was constitutional or not.
IMPLICATIONSOF THE SUPREMECOURT’S DECISION The Supreme Court’s ruling clearly strengthens the competent patient’s right to refuse medical care by making it a constitutionally protected right that cannot be undermined by the vagaries of state laws. Importantly, this right extends to artificial nutri-
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tion and hydration. Thus, state living-will statutes that do not permit the termination of artificial nutrition and hydration would seem to be unconstitutional. Regardless of state laws, physicians who follow the wishes of competent patients who refuse life-sustaining medical care, including artificial nutrition and hydration, are completely protected. Incompetent patients also have a right to refuse medical care, including artificial nutrition and hydration. In addition, there seems to be a majority of Supreme Court justices who believe that advance care documents, explicit verbal statements, and the appointment of a proxy decision-maker are constitutionally protected mechanisms to secure this right. The Supreme Court recognizes that incompetent patients who never were competent, never left an advance care document, or never appointed a proxy still have a right to refuse medical care. The majority permits each state to enact regulations on how surrogates will exercise this right for the incompetent patients. Unfortunately, the majority did not provide guidelines on what regulations would be deemed excessive restrictions and therefore unconstitutional. What does this mean for the physician? In some states, such as New Jersey and California, court rulings permit families to decide for incompetent patients in the absence of “clear and convincing” evidence. These rules are constitutional and mean that physicians in conjunction with the family can decide whether to terminate care to incompetent patients in these states. Many states, however, have no explicit laws or rules regulating the surrogate’s exercise of an incompetent patient’s right to refuse medical care. Until rules are explicated, physicians are probably well protected by continuing their usual practice of making terminating-care decisions in conjunction with the patient’s family. The Supreme Court’s decision does permit states to regulate terminating-care decisions for incompetents more closely. Noting the high level of state regulation of abortion after the Supreme Court’s Webster decision, many physicians and commentators have anticipated the Cruzan decision would prompt excessive state rules restricting the termination of care [3]. But this fear is unfounded. The politics of terminating care is not the politics of abortion. Many surveys have shown that 80% or more of the public is against state intrusion in terminating-care decisions and wants such decisions left to the family and physicians [36]. The months since the Cruzan decision have confirmed this view; there has been no rush to limit decisions to terminate care. Rather, the activity has been to make such decisions easier. For instance, states such as
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Massachusetts and New York, which have never adopted living-will laws, quickly passed laws empowering proxy decision-makers and providing legal protection to physicians who follow the proxy’s wishes in good faith. Similarly, in the wake of Cruzan, Congress enacted the “Patient Self-Determination Act” to encourage the use of advance care documents in hospitals. In many regards, terminating-care decisions for incompetent patients who have not left advance care documents or specified proxy decision-makers will be unaffected by the Cruzan ruling, essentially remaining decisions made between physician and family.
CONCLUSIONS By focusing on the consequences for Nancy Cruzan herself and the implications for abortion, many people condemned the Cruzan decision. But Supreme Court decisions should not be judged by their impact on any single case; their importance inheres in establishing broad principles that govern all citizens. The Cruzan decision (1) definitively recognizes the right to refuse medical care as a constitutionally guaranteed right, (2) ensures this right applies to artificial nutrition and hydration, (3) strongly implies that living wills, durable power of attorney, and other clear statements of patient preferences are protected as necessary to the exercise of a fundamental right, and (4) does not mandate extensive state regulation of surrogate decision-making for incompetent patients. When these principles are fully appreciated, it becomes clear that this case significantly advances patient rights. For these reasons, we should praise, not denounce, the Cruzan ruling.
ACKNOWLEDGMENT I would like to thank Dennis Thompson and Arthur Applbaum and Drs. David Weinberg and Michael Miller for their critical comments on the manuscript.
REFERENCES 1. Cruzan v. Director, Missouri Department of Health 110 S. Ct. 2841 (1990). 2. Society of Critical Care Medicine quoted in High Court: states can regulate food and water. American Medical News 1990 Jul 6/13: 30. 3. Annas GJ. Nancy Cruzan and the right to die. N Engl J Med 1990: 323: 670-3. 4. In re &in/an 70 N.J. 10 (1976). 5. Emanuel EJ. A review of the ethical and legal aspects of terminating medical care. Am J Med 1988; 84: 291-301. 6. Superintendent of Belchertown State School v. Saikewicz 373 Mass. 728 (1977). 7. In re Conroy 98 N.J. 321 (1985). 8. Barflingv. Superior Court 163 Cal. App. 3d 186 (1984). 9. Bouvia v. Superior Court 179 Cal. App. 3d 1127 (1986). 10. In re Co/yer 99 Wash. 2d 114 (1983). 11. Schloendorffv. Society of N.Y. Hospital 211 N.Y. 125 (1914). 12. In re Longeway 123 Ill. 2d 33 (1989). 13. Annas GJ. When procedures limit rights: from Quinlan to Conroy. Hastings Cent Rep 1985; 15: 24-6.
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14. Bowers v. Hardwick 478 U.S. 186 (1986). 15. Tribe LH. American constitutional law. 2nd ed. Mineola, New York: Foundation Press, 1988: 1368, footnote 25. 16. Corbett v. D’Alessandro 487 So. 2d 368 (1986). 17. Brophy v. New England Sinai Hospital 398 Mass. 417 (1986). 16. In re Jobes 108 N.J. 394 (1987). 19. Deli0 v. Westchester County Medical Center 516 N.Y.S. 2d 677 (1987). 20. In re Gardner 534 A. 2d 947 (Me. 1987). 21. In re Guardianship of Grant 109 Wash. 2d 545 (1988). 22. Conservatorship of Drabick 200 Cal. App. 3d 185 (1988). 23. Oklahoma Natural Death Act. Okla. Stat. Ann. tit. 63 sections 3101-3111. 24. Society for the Right to Die. Tube feeding law in the United States. New York: Society for the Right to Die, October 1989. 25. In re Peter 108 N.J. 365 (1987). 26. Society for the Right to Die. Medical durable power of attorney. New York: Society for the Right to Die, October 1989.
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27. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forego life-sustaining treatment. Washington, DC: U.S. Government Printing Office, 1983. 20. In re Mary Moe 385 Mass. 555 (1982). 29. In re Eichner (Brother Fox) 52 N.Y. 2d 363 (1981). 30. In re Longeway 123 Ill. 2d 33 (1989) (dissenting opinion by Judge Ward). 31. Gutheil TG, Appelbaum PS. Substituted judgment: best interests in disguise. Hastings Cent Rep 1983; 13: 8-11. 32. Emanuel EJ. What criteria should guide decision makers for incompetent patients? Lancet 1988; 1: 170-l. 33. Uhlmann RF, Pearlman RA, Cain KC. Physicians and spouses’ predictions of elderly patients’ resuscitation preferences. J Gerontol 1988; 43: M115-21. 34. Emanuel EJ. A communal vision of care for incompetent patients. Hastings Cent Rep 1987; 17: 15-20. 35. Cruzan v. Harmon 760 SW. 2d 408 (MO. 1988). 36. New York Times 1990 June 26: A18.
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Securing Patients’ Right to Refuse Medical Care: In Praise of the Cruzm Decision EZEKIEL J. EMANUEL, M.D., Ph.D., BOSTON, Massachusetts
I
n the months since the Cruzarz decision [l], many commentators have decried it as a “tragedy” because (1) it did not end Nancy Cruzan’s personal misfortune, (2) it permits too much state regulation of the right-to-die, and (3) it implies the Supreme Court will further restrict other constitutional rights such as abortion [2,3]. This view is incorrect. In Cruzun, the Supreme Court resolved many of the controversies surrounding the “right-to-die” that have persisted since the Quinlan decision [4] and thereby actually strengthened patient rights. To explain the importance of the Cruzan decision, this article will outline the legal history and background of the case, the Supreme Court’s ruling, and its implications for physicians in withdrawing medical care.
THE QU/NDl/V FRAMEWORK In the Quinlan case, the New Jersey Supreme Court delineated a legal and ethical framework for terminating medical care [5] that with elaboration, notably in Suikewicz [6] and Conroy [7], has remained the guiding standard for all subsequent “right-to-die” cases. It is helpful to summarize the four elements of this framework and the controversies that surround them. First, the New Jersey Supreme Court and other courts have claimed that patients have a general constitutional right to privacy that encompasses the more specific right to refuse medical care [&lo]. Other courts have sought to derive the right to refuse medical care from the common-law right of bodily integrity that permits an adult to “determine what should be done with his own body” [11,12]. Courts have recognized this right for competent as well as incompetent patients, including those who never explicitly specified preferences regarding medical care. Finally, courts have indicated that in theory this right is not absolute and might be limited by at least four countervailing interests: (1) the preservation of life, (2) the prevention of suicide, (3) the protection of third parties, and (4) the preservaFrom the Dana-Farber Cancer Institute, Boston, Massachusetts. Requests for reprints should be addressed to Ezekiel J. Emanuel, M.D., Ph.D., Dana-Farber Cancer Institute, 44 Binney Street, Boston, Massachusetts 02115. Manuscript submitted December 12. 1990, and accepted in revised form June 6. 1991.
tion of the integrity of the medical profession. In practice, however, such interests have almost never overridden this right [5]. The United States Supreme Court had refused to hear the Quinlun case on appeal. Many suspected that the Reagan-appointed conservative majority would avoid broadly interpreting the implicit constitutional right of privacy to include the right to refuse medical care [13]. Indeed, the Supreme Court suggested this in a 1986 case when it wrote: Nor are we inclined to take a more expansive view of our authority to discover new fundamental rights. . . . There should be, therefore, great resistance to expand the substantive reach of those clauses, particularly if it requires redefining the category of rights deemed to be fundamental [14]. More importantly, the ability to recognize the refusal of medical care by incompetent patients who provided no prior indication of their preferences has been questioned. How can such patients who irreversibly lack the ability to make decisions have a right of privacy [5]? As Laurence Tribe, one the nation’s most prominent and liberal constitutional lawyers, normally hostile to the Rehnquist court, put it: Given the fact that these patients are irreversibly comatose or in a chronic vegetative state, attributing “rights” to these patients at all is somewhat problematic. . . . [T]he task of giving content to the notion that they have rights, in the face of the recognition that they could make no decisions about how to exercise any such right, remains a difficult one [El. Second, the Quinlun decision stated that the right to refuse medical care extended to life-sustaining treatments such as respirators. Subsequently, courts have permitted the termination of all types of medical interventions and, in the Conroy case, the New Jersey Supreme Court first included artificial nutrition and hydration as a medical treatment that could be withheld or withdrawn [5,7]. The issue of whether artificial nutrition and hydration should be considered medical treatments that can be terminated or basic elements of care that cannot be withheld has been controversial and frequently adjudicated before state courts and the subject of legislation [16-241. The third element of the framework relates to who decides for incompetent patients. For incomMarch
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would suffer “recurring, unavoidable and severe pain” [7]. This pain standard has been severely attacked [5,7,34]. Consensus has eluded every other proposed “objective” standard.
petent patients who were once competent, clear and explicit statements about desired medical care, whether living wills or oral statements expressed in reflective conversations, have been deemed legal and binding [5,17]. Recently, states have also enacted, and courts have recognized, laws that permit the assignment of durable power of attorney for health care decision-making [25,26]. For incompetent patients who could not exercise their own “right-to-die” and who neither left explicit statements nor specified a surrogate decision-maker, most courts and legislatures have agreed with QuinZan that the family should serve as the surrogate with “full power to make decisions.” Some states have established procedures to ensure that the surrogate does not abuse his power to exercise the incompetent patient’s right [7]. The fourth aspect of the framework involves the criteria for justifying the surrogate’s decision to terminate care of incompetent patients. While the Quinlan court never delineated a standard that surrogates should utilize in deciding whether to terminate an intervention, they did view Karen Quinlan’s respirator as “extraordinary” care. Over the subsequent 15 years, however, the ordinary/extraorclinary distinction has been rejected as having “too many conflicting meanings” to be a useful guide [5,27]. Instead, many courts have followed the Saikewicz decision [6], adopting the “substituted judgment” standard that requires the surrogate decision-maker to “ascertain the incompetent person’s actual interests and preferences,” making a decision that “would be made by the incompetent person if that person were competent” [28]. The “substituted judgment” standard, however, has been criticized as “unrealistic” [29], a “fiction,” even a “cruel charade” [5,22,28]. For patients who have always been incompetent and others for whom no family member is familiar with the incompetent patient’s views, “substituted judgment” cannot be given [ 18,301. More generally, lingering doubts about the accuracy of one person’s assessment of another person’s preferences, no matter how pure the motives and intimate the relationship, always exist [31,32]. These theoretic doubts have been substantiated by empiric research suggesting that physicians and even spouses of many decades cannot accurately predict a patient’s preferences regarding life-sustaining interventions [33]. These doubts have led some to urge a more “objective” determination of when care should be terminated from incompetent patients. In the Conroy case, for instance, the New Jersey court suggested that pain serve as an “objective” criterion so that life-sustaining treatments could be terminated if the patient
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THE MISSOURISUPREMECOURT’S CRWAN DECISION The facts of the Cruzan case are straightforward and almost identical to those of Quinlan [1,4]. On January 11,1983, at 12~50 AM, Nancy Cruzan, then 26 years old, was driving home, skidded, and overturned in a field. She was thrown 20 to 35 feet from her car. About 20 minutes after the accident, paramedics arrived and began resuscitative efforts. It was suspected that she had suffered irreversible anoxic brain damage, and after a month or so it became clear that she was in a persistent vegetative state. With the consent of her (then) husband, a gastrostomy tube was placed for feeding on February 3, 1983. Three years later, in the fall of 1986, Nancy Cruzan’s parents asked a judge to permit the discontinuation of the tube feedings. This request was refused, although another judge subsequently approved the withdrawal of feedings. The Missouri Attorney General appealed the trial court judge’s decision. Like many young people, Nancy Cruzan never completed an advance care document and never designated a proxy decision-maker. A housemate and friend testified that about a year before the accident, she and Nancy had discussed the death of relatives. Nancy was reported to have said that “she would never want to live [in a vegetative state] because if she couldn’t be normal or even, you know, like half way, and do things for [herlself . . . she didn’t want to live” [l]. In its ruling, the Missouri Supreme Court first questioned whether incompetent patients who left no clear view of their preferences had the right to refuse medical care [35]. In addition, the court argued that even if incompetent patients had such a right, the countervailing interest in preserving life may prevail in the absence of a clear expression of the patient’s wishes. Second, the Missouri Supreme Court questioned whether artificial nutrition and hydration are medical interventions that could be terminated. While the Missouri justices labeled this issue a “semantic dilemma” that was “legally irrelevant,” they did note that “common sense tells us that food and water a0 not treat an illness” [7]. Consequently, many interpreted the decision as precluding their discontinuation. Third, while the Missouri Supreme Court did not challenge the appointment of the family as Nancy’s
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surrogate, it did challenge the fourth element of the Quinlalz framework by limiting the discretion of the surrogate in exercising “substituted judgment.” The justices argued that her parents could exercise her right to refuse medical care only if there existed either a formal living will or some other “clear and convincing” statement to direct their choices. The court judged her statement as insufficiently clear and convincing. Ironically, in mandating this “clear and convincing” standard, the Missouri court was not expounding its own novel standards but simply following a precedent established by the New Jersey Supreme Court in the Conroy and Jobes rulings [6,18]. In these cases, the New Jersey justices maintained that statements regarding termination of care must satisfy the “clear and convincing” standard by being carefully considered, specific positions maintained over a number of years. “Offhand remarks,” “informally expressed reactions,” or “remote, general, spontaneous [comments] made in casual circumstances” are, according to the New Jersey Supreme Court, unreliable guides to a patient’s true preference [18]. Indeed, almost anticipating the circumstances in Crumn, the New Jersey justices wrote: An offhand remark about not wanting to live under certain circumstances made by a person when young and in the peak of health would not in itself constitute clear proof twenty years later that he would want life-sustaining treatment withheld under those circumstances [6]. Following this standard in the Jobes case, the New Jersey Supreme Court dismissed comments attributed to Ms. Jobes approving of the termination of care from incompetent patients, including comments related to the case of Karen Quinlan, as “not sufficiently ‘clear and convincing’ ” to be used. The New Jersey Supreme Court nevertheless did permit the termination of Ms. Jobes’s artificial feedings by arguing that the patient’s family best understand the patient’s personal values and can exercise the incompetent patient’s rights to refuse medical care [18]. The Missouri Supreme Court departed from their New Jersey counterpart, ruling that surrogates could not exercise substituted judgment in the absence of “clear and convincing” statements because to do so would incur “arbitrary decisionmaking.”
the right-to-die that apply to all patients henceforth. First, by 8 to 1, the justices endorsed the notion that competent patients have a constitutionally protected right to refuse medical care. Chief Justice Rehnquist, writing for the majority, refused to base this right on the “penumbral” but not explicit right of privacy or on the common-law right of bodily integrity. Rather, to make this right unassailable, Justice Rehnquist found an explicit constitutional basis for it as a specific extension of the 14th Amendment’s provision that no state shall “deprive any person of life, liberty, or property without due process of law” [l]. Only Justice Scalia asserted that “the Constitution has nothing to say about the subject. To raise up a constitutional right here we would have to create out of nothing” [l]. Those who claim that the majority did not actually recognize a competent patient’s constitutional right to refuse medical care but only assumed it for the sake of argument [3] have distorted the decision. Indeed this assessment does not agree with how the justices viewed their decision. Justice O’Connor states that she believes the court endorsed this constitutional right: The liberty guaranteed by the Due Process Clause must protect, if it protects anything, an individual’s deeply personal decision to reject medical treatment,
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Consequently, the majority recognized a difference between the right of competent patients that is constitutionally guaranteed and unassailable and the right of incompetent patients. It suggests that incompetent patients have the right to refuse medical
In its Cruzan ruling, the U.S. Supreme Court addressed and resolved most of these controversies. Indeed, the 5-4 vote disguises broad agreement among the justices on general principles regarding
including the artificial delivery of food and water [l].
Similarly, Justice Stevens in dissent believes his colleagues have recognized this right: [The majority errs] despite endorsing [the proposition] that . . . a competent individual’s decision to refuse life-sustaining medical procedures is an aspect of liberty protected by the Due Process Clause of the Fourteenth Amendment [l].
However, the about extending petent patients. ascribing rights tients expressed quist wondered cannot exercise a right:
majority was much more hesitant this constitutional right to incomIn words that echo the doubts of to permanently incompetent paby the liberal Tribe, Justice Rehnwhether incompetent patients who their right of privacy can have such
The difficulty with petitioners’ claim is that in a sense it begs the question: an incompetent person is not able to make an informed and voluntary choice to exercise a hypothetical right to refuse treatment or any other right. Such a “right” must be exercised for her, if at all, by some sort of surrogate [l].
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guards, surreptitiously
care; however, the extent of this right may be qualified by states if the wishes of the incompetent are not clearly known. Second, the Supreme Court also stated that artificial nutrition and hydration are medical treatments that can be withdrawn. It recognized, in the words of Justice O’Connor, that “artificial feedings cannot be distinguished from other forms of medical treatment” [l]. Third, the justices passed over the issue of who should serve as surrogate, since both the majority and minority implied that “loved ones” are appropriate proxies. More importantly, while the Supreme Court did not directly address the issue of whether states must respect the surrogate’s decision in exercising an incompetent patient’s right to refuse medical care, Justice O’Connor made quite clear that in her view, states probably have a constitutional obligation to enforce a formally designated proxy’s decision because only in this way can they respect the patient’s right to refuse medical care.
words, because the incompetent patient cannot exercise his own right, the Constitution “does not require a State to accept the ‘substituted judgment’ of close family members in the absence of substantial proof that their views reflect the patient’s” [l]. Implicitly, the majority maintained that the surrogate could only be viewed as exercising the incompetent patient’s right if there was some check to ensure that the decision reflected
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that all states implement
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evidentiary standard.” The Supreme Court merely said that a requirement for “clear and convincing” evidence of an incompetent’s wishes did not violate the Constitution and did not pose an unreasonable burden on the exercise of a fundamental right. In her opinion concurring with the majority, Justice O’Connor emphasized this point:
If adopted, and a majority of justices seem to concur, such a view would make the appointment of a durable power of attorney for health care decisions a constitutional right, whether states have statutes explicitly authorizing proxies for health care decisions or not. Fourth, the disagreement between the majority and the minority revolved around the latitude that the incompetent’s surrogate should have in exercising the right to refuse medical care and that the state should have in restricting a surrogate in the absence of clear indication of the incompetent’s wishes. In particular, while the justices agreed that there must be some safeguards to ensure that the incompetent’s surrogate makes the correct decision, their disagreement centered on the nature and extent of the safeguards permitted by the Constitution; and this disagreement turned on the evidence states would be permitted to require in support of a surrogate’s decision. In the minority’s view, Missouri’s requirement that the surrogate justify his decision by citing either an advance care document or some other “clear and convincing” evidence of Nancy Cruzan’s view is a substantial procedural “obstacle to the exercise of a fundamental right” and is therefore unconstitutional. Indeed, the implication was that Missouri was abusing its power to define procedural safe-
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erences rather than the surrogate’s wishes, no matter how lovingly expressed. Indeed without such a check, it seemed illogical to claim that the incompetent’s right was being exercised, rather than the surrogate’s right over the incompetent. Consequently, while incompetent patients have a constitutional right to refuse medical care, in the absence of an advance care document or other “clear and convincing” evidence, states may scrutinize family decisions to ensure they do reflect the patient’s wishes. Importantly, the majority did not mandate
[T]he Court does not today decide the issue whether a State must also give effect to the decisions of a surrogate decisionmaker. . . . In my view, such a duty may well be constitutionally required to protect the patient’s liberty interest in refusing medical treatment [l].
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imposing its view on Nancy
Cruzan and overriding her constitutional right. The majority disagreed. In Justice Rehnquist’s
[Today’s decision does not] prevent States from developing other approaches for protecting an incompetent individual’s liberty interest in refusing medical treatment. . . . Today we decide only that one State’s practice does not violate the Constitution; the more challenging task of crafting appropriate procedures for safeguarding incompetents’ liberty interests is entrusted to the “laboratory” of the States [I]. Thus, it can be said that the majority and minori-
ty disagreed on a fairly small point, namely whether Missouri’s requirement that a surrogate exercise substituted judgment in refusing medical care for an incompetent patient only when supported by “clear and convincing” evidence was constitutional or not.
IMPLICATIONSOF THE SUPREMECOURT’S DECISION The Supreme Court’s ruling clearly strengthens the competent patient’s right to refuse medical care by making it a constitutionally protected right that cannot be undermined by the vagaries of state laws. Importantly, this right extends to artificial nutri-
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tion and hydration. Thus, state living-will statutes that do not permit the termination of artificial nutrition and hydration would seem to be unconstitutional. Regardless of state laws, physicians who follow the wishes of competent patients who refuse life-sustaining medical care, including artificial nutrition and hydration, are completely protected. Incompetent patients also have a right to refuse medical care, including artificial nutrition and hydration. In addition, there seems to be a majority of Supreme Court justices who believe that advance care documents, explicit verbal statements, and the appointment of a proxy decision-maker are constitutionally protected mechanisms to secure this right. The Supreme Court recognizes that incompetent patients who never were competent, never left an advance care document, or never appointed a proxy still have a right to refuse medical care. The majority permits each state to enact regulations on how surrogates will exercise this right for the incompetent patients. Unfortunately, the majority did not provide guidelines on what regulations would be deemed excessive restrictions and therefore unconstitutional. What does this mean for the physician? In some states, such as New Jersey and California, court rulings permit families to decide for incompetent patients in the absence of “clear and convincing” evidence. These rules are constitutional and mean that physicians in conjunction with the family can decide whether to terminate care to incompetent patients in these states. Many states, however, have no explicit laws or rules regulating the surrogate’s exercise of an incompetent patient’s right to refuse medical care. Until rules are explicated, physicians are probably well protected by continuing their usual practice of making terminating-care decisions in conjunction with the patient’s family. The Supreme Court’s decision does permit states to regulate terminating-care decisions for incompetents more closely. Noting the high level of state regulation of abortion after the Supreme Court’s Webster decision, many physicians and commentators have anticipated the Cruzan decision would prompt excessive state rules restricting the termination of care [3]. But this fear is unfounded. The politics of terminating care is not the politics of abortion. Many surveys have shown that 80% or more of the public is against state intrusion in terminating-care decisions and wants such decisions left to the family and physicians [36]. The months since the Cruzan decision have confirmed this view; there has been no rush to limit decisions to terminate care. Rather, the activity has been to make such decisions easier. For instance, states such as
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Massachusetts and New York, which have never adopted living-will laws, quickly passed laws empowering proxy decision-makers and providing legal protection to physicians who follow the proxy’s wishes in good faith. Similarly, in the wake of Cruzan, Congress enacted the “Patient Self-Determination Act” to encourage the use of advance care documents in hospitals. In many regards, terminating-care decisions for incompetent patients who have not left advance care documents or specified proxy decision-makers will be unaffected by the Cruzan ruling, essentially remaining decisions made between physician and family.
CONCLUSIONS By focusing on the consequences for Nancy Cruzan herself and the implications for abortion, many people condemned the Cruzan decision. But Supreme Court decisions should not be judged by their impact on any single case; their importance inheres in establishing broad principles that govern all citizens. The Cruzan decision (1) definitively recognizes the right to refuse medical care as a constitutionally guaranteed right, (2) ensures this right applies to artificial nutrition and hydration, (3) strongly implies that living wills, durable power of attorney, and other clear statements of patient preferences are protected as necessary to the exercise of a fundamental right, and (4) does not mandate extensive state regulation of surrogate decision-making for incompetent patients. When these principles are fully appreciated, it becomes clear that this case significantly advances patient rights. For these reasons, we should praise, not denounce, the Cruzan ruling.
ACKNOWLEDGMENT I would like to thank Dennis Thompson and Arthur Applbaum and Drs. David Weinberg and Michael Miller for their critical comments on the manuscript.
REFERENCES 1. Cruzan v. Director, Missouri Department of Health 110 S. Ct. 2841 (1990). 2. Society of Critical Care Medicine quoted in High Court: states can regulate food and water. American Medical News 1990 Jul 6/13: 30. 3. Annas GJ. Nancy Cruzan and the right to die. N Engl J Med 1990: 323: 670-3. 4. In re &in/an 70 N.J. 10 (1976). 5. Emanuel EJ. A review of the ethical and legal aspects of terminating medical care. Am J Med 1988; 84: 291-301. 6. Superintendent of Belchertown State School v. Saikewicz 373 Mass. 728 (1977). 7. In re Conroy 98 N.J. 321 (1985). 8. Barflingv. Superior Court 163 Cal. App. 3d 186 (1984). 9. Bouvia v. Superior Court 179 Cal. App. 3d 1127 (1986). 10. In re Co/yer 99 Wash. 2d 114 (1983). 11. Schloendorffv. Society of N.Y. Hospital 211 N.Y. 125 (1914). 12. In re Longeway 123 Ill. 2d 33 (1989). 13. Annas GJ. When procedures limit rights: from Quinlan to Conroy. Hastings Cent Rep 1985; 15: 24-6.
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14. Bowers v. Hardwick 478 U.S. 186 (1986). 15. Tribe LH. American constitutional law. 2nd ed. Mineola, New York: Foundation Press, 1988: 1368, footnote 25. 16. Corbett v. D’Alessandro 487 So. 2d 368 (1986). 17. Brophy v. New England Sinai Hospital 398 Mass. 417 (1986). 16. In re Jobes 108 N.J. 394 (1987). 19. Deli0 v. Westchester County Medical Center 516 N.Y.S. 2d 677 (1987). 20. In re Gardner 534 A. 2d 947 (Me. 1987). 21. In re Guardianship of Grant 109 Wash. 2d 545 (1988). 22. Conservatorship of Drabick 200 Cal. App. 3d 185 (1988). 23. Oklahoma Natural Death Act. Okla. Stat. Ann. tit. 63 sections 3101-3111. 24. Society for the Right to Die. Tube feeding law in the United States. New York: Society for the Right to Die, October 1989. 25. In re Peter 108 N.J. 365 (1987). 26. Society for the Right to Die. Medical durable power of attorney. New York: Society for the Right to Die, October 1989.
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27. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forego life-sustaining treatment. Washington, DC: U.S. Government Printing Office, 1983. 20. In re Mary Moe 385 Mass. 555 (1982). 29. In re Eichner (Brother Fox) 52 N.Y. 2d 363 (1981). 30. In re Longeway 123 Ill. 2d 33 (1989) (dissenting opinion by Judge Ward). 31. Gutheil TG, Appelbaum PS. Substituted judgment: best interests in disguise. Hastings Cent Rep 1983; 13: 8-11. 32. Emanuel EJ. What criteria should guide decision makers for incompetent patients? Lancet 1988; 1: 170-l. 33. Uhlmann RF, Pearlman RA, Cain KC. Physicians and spouses’ predictions of elderly patients’ resuscitation preferences. J Gerontol 1988; 43: M115-21. 34. Emanuel EJ. A communal vision of care for incompetent patients. Hastings Cent Rep 1987; 17: 15-20. 35. Cruzan v. Harmon 760 SW. 2d 408 (MO. 1988). 36. New York Times 1990 June 26: A18.
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