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The Right to Die:

The Broken Road from Quinlan to Schiavo

Annette E. Clark*

I. INTRODUCTION

On the thirtieth anniversary of the Quinlan case,1 it seems appropriate to go back in time and revisit the decision that started us down the road to developing what is now a large and complex body of right-to-die jurisprudence in this country. As a longtime bioethics professor, this opportunity to reacquaint myself with one of the seminal cases, to read it in something other than the edited and abbreviated form in which it appears in casebooks, has been an education in and of itself. It is a reminder that we should not lose sight of our beginnings when we try to understand where the path of right-to-die law has taken us and to anticipate where it will lead us next.

The life and death of Karen Ann Quinlan and the Chancery Court and New Jersey Supreme Court decisions that flowed from her sad story provide a remarkable introduction to the right-to-die issues that have developed over the ensuing thirty years.2 Quinlan also provides a useful measure of the law’s progress over the last thirty years.3 The United States Supreme Court’s decision in the Cruzan case, which occurred approximately midway through this thirty-year period, and the

1. In re Quinlan, 348 A.2d 801, 806 (N.J. Super. Ct. Ch. Div. 1975), modified and remanded, 355 A.2d 647 (N.J. 1976).

2. Those issues include: Whether the law should distinguish between the withdrawal of ordinary and extraordinary medical treatment? What is the proper role of religion and religious beliefs in the withdrawal of life-sustaining treatment? What is the best method to determine the wishes of an incompetent individual regarding medical treatment? Should the courts, the medical profession, or loved ones and family members be empowered to make life-and-death decisions for incompetent individuals? Should the law err on the side of sustaining life if we cannot discern what the now-incompetent individual would have chosen, or should courts turn to a best interests analysis? Is the right to refuse treatment a fundamental right protected by the federal Constitution, and if so, does that right continue after an individual becomes incompetent?

3. Evaluating the developments since Quinlan helps to determine whether the law and society have continued down the road established in Quinlan, found a better path, or become lost somewhere along the way.

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very recent developments in the Schiavo case provide some enlightening, and perhaps distressing, insights into the question of whether the law and society have moved forward in our right-to-die jurisprudence.4 This article consequently reviews the Quinlan decisions and issues raised in those cases.5 It also discusses the seminal developments in right-to-die law following Quinlan.6

II. THE CASE OF KAREN ANN QUINLAN

On April 15, 1975, Karen Ann Quinlan, for reasons still unknown, stopped breathing for two fifteen-minute periods.7 The lack of oxygen (anoxia) produced significant brain damage, leaving the twenty-one- year-old first in a coma and then in a persistent vegetative state, dependent upon a respirator to breathe.8 The Quinlan family first authorized the treating neurologist, Dr. Morse, to do everything he could to keep Karen alive.9 After three months without improvement in her neurological condition and with little hope that she would ever regain any level of cognitive function, however, Karen’s parents consulted their local parish priest, who advised them that the Roman Catholic Church’s teachings would permit withdrawal of extraordinary medical treatment under these circumstances.10 Mr. and Mrs. Quinlan then approached hospital officials and sought to have the respirator removed, knowing that doing so would likely result in their daughter’s death.11 To effectuate their decision, Karen’s parents signed the following statement:

4. Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261 (1990); In re Schiavo, 780 So. 2d 176 (Fla. Dist. Ct. App.), reh’g denied (Feb. 22, 2001), review denied, 789 So. 2d 348 (Fla. 2001).

5. See infra Part II (discussing the issues and opinions of the Quinlan case). 6. See infra Parts III, IV (analyzing two seminal right-to-die cases post-Quinlan: Cruzan and

Schiavo). 7. In re Quinlan, 348 A.2d 801, 806 (N.J. Super. Ct. Ch. Div. 1975), modified and remanded,

355 A.2d 647 (N.J. 1976). Some commentators, however, have expressed the belief that Ms. Quinlan had been overcome by an ingestion of a combination of alcohol and tranquilizer pills. Robert D. McFadden, Karen Ann Quinlan, 31 Dies: Focus of the ‘76 Right to Die Case, N.Y. TIMES, June 12, 1985, at A1.

8. Quinlan, 348 A.2d at 809–12. Karen’s physicians described this as a neurological condition consisting of irreversible brain damage with a total lack of any cognitive or cerebral functioning, but with a partially functioning lower brain (brainstem). Id. at 811–12. The brainstem continued to regulate such “vegetative” functions as Karen’s body temperature, blood pressure, heart rate, and sleep-wake cycles. Id. at 812.

9. Id. 10. Id. at 813. The family consulted with Monsignor Trapasso, who explained to the family

that a declaration by Pope Pius XII clarified that the family had no obligation to sustain life when there is no realistic hope of recovery. McFadden, supra note 7, at A1.

11. Quinlan, 348 A.2d at 813. Efforts had been made to wean Karen from the respirator, but these attempts to have her breathe on her own were unsuccessful, leading her physicians to

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We authorize and direct Doctor Morse to discontinue all extraordinary measures, including the use of a respirator for our daughter Karen Quinlan. We acknowledge that the above named physician has thoroughly discussed the above with us and that the consequences have been fully explained to us. Therefore, we hereby RELEASE from any and all liability the above named physician, associates and assistants of his choice, Saint Clare’s Hospital and its agents and employees.12

Even with this authorization and release from liability, Dr. Morse expressly declined to withdraw the respirator, asserting that to do so would deviate from standard medical practice and would require making a “quality of life” determination, which he would not do.13

A. The Chancery Court Decision

In response to the doctor’s refusal to withdraw Karen’s respirator, Mr. Quinlan sought judicial assistance. He petitioned the chancery court to appoint him legal guardian of Karen’s person and property because of her incompetency, and asked that the court grant “the express power of authorizing the discontinuance of all extraordinary means of sustaining the vital processes of his daughter.”14

The chancery court judge placed this case within the framework of equity,15 with Mr. Quinlan’s petition invoking the parens patriae power of the court to aid and protect the incompetent Karen Ann Quinlan, and to act in her best interests.16 In Judge Muir’s view, the power of equity called upon the court to do justice in the particulars of this case according to the dictates of societal morality and judicial conscience.17 Interestingly, he directly equated this judicial conscience and morality, which would ultimately determine whether it was appropriate to authorize the removal of the respirator, with the role of the physician in society and the duty owed by physicians to their patients.18 In rather noble terms, he anointed the medical profession as the guardian of morality in life-and-death decision making, charged by society to “do all within [its] human power to favor life against death.”19 Furthermore,

conclude that she would likely be unable to sustain her breathing without the mechanical assistance provided by the respirator. Id. at 809.

12. Id. at 813–14. 13. Id. at 814. 14. Id. at 806. 15. Id. at 816 (stating that morality and conscience dictates the framework of the case). 16. Id. 17. Id. at 816–17. 18. Id. at 818. 19. Id.

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the court held Dr. Morse up as a shining example of the profession, attaching great significance to the fact that this “man who demonstrated strong empathy and compassion, a man who has directed care that impressed all the experts” had concluded that medical tradition would not justify the withdrawal of the respirator. 20

Judge Muir then took up the question of whether or how Karen’s own views on the subject of withdrawal of life-sustaining treatment, expressed prior to her incompetency, should factor into the court’s determination.21 If Dr. Morse’s views were entitled to instant respect and deference, Karen’s prior statements were not. As to testimony that Karen had said at the age of twenty in various conversations with friends and family that she would not want to be kept alive through artificial means, Judge Muir concluded that her statements were merely theoretical, not the expression of a personal choice made under circumstances where her death was a distinct choice (such as would be the case with a living will). Thus, her statements were not sufficiently probative to persuade the court that Karen would elect, if competent, to terminate the respirator.22

In the end, Judge Muir concluded that the decision whether Karen should be removed from the respirator was a medical decision, not a judicial one, and that parents, whose own best interests might conflict with the best interests of the incompetent, could concur in the medical treatment decision but could not control it.23 Furthermore, he held that to the extent that the court played any role as parens patriae, protecting Karen’s best interests could not include permitting her to die, since life in the sense of biological existence was all that she had remaining to her.24 Finally, the court concluded that the constitutional right to privacy claimed by Karen’s parent on her behalf was weaker than, and trumped by, both the medical profession’s duty to provide life-giving care and the judicial obligation to act in Karen’s best interests by choosing her life over her death.25 The court ultimately denied Mr. and Mrs. Quinlan any role in medical decision making for their daughter on the grounds that their anguish and inner conflicts would be magnified by having to be involved in the day-by-day medical decisions necessary for her care.26 Thus, rather than appointing either of the parents, the

20. Id. at 819. 21. Id. 22. Id. 23. Id. 24. Id. at 819–20. 25. Id. at 821–22. 26. Id. at 824.

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court chose a virtual stranger as guardian to protect the interests of the person of Karen Ann Quinlan.27

B. The New Jersey Supreme Court Decision

The chancery court’s decision was obviously the product of a time when the medical profession held great sway. The court’s view of physicians as god-like figures who controlled and protected society’s morality and conscience through their life-and-death decision-making for their patients is a rather remarkable example of the strength and reach of medical paternalism only three decades ago.28

Nevertheless, if the chancery court’s opinion was tradition-bound and backward looking, the New Jersey Supreme Court decision only one year later was strikingly prescient and forward-looking. This difference in approach is immediately apparent in the way the state’s highest court framed the issue before it:

The matter is of transcendent importance, involving questions related to the definition and existence of death, the prolongation of life through artificial means developed by medical technology undreamed of in past generations of the practice of the healing arts; the impact of such durationally indeterminate and artificial life prolongation on the rights of the incompetent, her family and society in general; the bearing of constitutional right and the scope of judicial responsibility, as to the appropriate response of an equity court of justice to the extraordinary prayer for relief of the plaintiff. Involved as well is the right of the plaintiff, Joseph Quinlan, to guardianship of the person of his daughter.29

Before turning to the transcendent questions and constitutional and legal issues alluded to above, Justice Hughes extensively reviewed the evidence of Karen’s medical condition and prognosis, and, unlike the chancery court, emphasized the fact that, within the bounds of medical certainty, Karen would never regain cognitive or sapient life.30 The

27. Id. The court appointed Daniel Coburn, Esq., who had acted on Karen’s behalf during the guardianship hearing. Id. As is typical with guardians ad litem, Mr. Coburn likely had no knowledge of Karen Quinlan prior to this proceeding. Id.

28. See S. Elizabeth Wilborn Malloy, Beyond Misguided Paternalism: Resuscitating the Right to Refuse Medical Treatment, 33 WAKE FOREST L. REV. 1035, 1067–68 (1998) (arguing that the court’s deference to physicians stems from a misplaced appreciation of medical professionals and their ability to save lives); Alicia R. Ouellette, When Vitalism is Dead Wrong: The Discrimination Against and Torture of Incompetent Patients By Compulsory Life-Sustaining Treatment, 79 IND. L.J. 1, 3 (2004) (noting the shift in the past thirty years from medical paternalism to patient autonomy).

29. In re Quinlan, 355 A.2d 647, 652 (N.J.), cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976).

30. Id. at 655.

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court also explored the factual foundation regarding Mr. Quinlan’s suitability as a guardian for his daughter, finding that he was a loving father, a deeply religious man, and a person of unquestioned moral character.31

Turning next to the legal questions before it, the court dispensed quickly with Mr. Quinlan’s constitutional claims of free exercise of religion and cruel and unusual punishment, finding neither to be applicable in this case.32 The New Jersey Supreme Court gave careful and prolonged consideration to the constitutional right of privacy the Quinlans claimed. The court imagined a scenario where Karen Ann Quinlan miraculously regained competence for a time, but with the same grim prognosis of irreversible and permanent brain damage without hope of a cognitive existence. The court had no difficulty reaching the conclusion that, under these hypothetical circumstances, Karen, if competent, would have the right to decide to discontinue the respirator even if the decision resulted in her death, and that no State interest could compel her continued vegetative existence against her will.33

It is perhaps not surprising that the court centered this legal right in the developing federal constitutional right to privacy. Citing Eisenstadt v. Baird,34 Griswold v. Connecticut,35 and Roe v. Wade,36 the latter of which had been decided just three years earlier, the New Jersey

31. Id. at 657. The court described in some detail the Roman Catholic Church’s position on the question of withdrawal of life-sustaining treatment, as reflected in a position statement by Bishop Lawrence B. Casey, spokesperson for the New Jersey Catholic Conference, which was contained within the Conference’s amicus brief. Id. at 658–60. Justice Hughes emphasized that the purpose of this exposition of the Catholic Church’s position was only to explore the impact it had on Joseph Quinlan’s motivation and purpose in seeking guardianship of his daughter rather than to establish precedent for the court’s decision. Id. at 660.

32. Id. at 661–62. As to the free exercise of religion claim, the court stated that the right to act in accordance with religious beliefs is not free from governmental restraint, that the State’s interest in the preservation of human life would outweigh any constitutional right claimed here, and that there existed no independent parental right of religious freedom to support the relief Mr. Quinlan was requesting. Id. The court also concluded that the Eighth Amendment protection against cruel and unusual punishment was relevant only to penal sanctions and had never been extended to the correction of societal ills or injustices. Id. at 662.

33. Id. at 663. Justice Hughes analogized this scenario to that of a competent, terminally ill patient suffering from cancer and in great pain, whose right to refuse resuscitation or a respirator was unquestioned. Id.

34. 405 U.S. 438 (1972) (holding that the right to privacy gives an individual the right to be free from unwarranted governmental intrusion into the decision whether to bear a child).

35. 381 U.S. 479 (1965) (holding that the penumbra of the Bill of Rights protects an individual’s privacy interests from governmental intrusion).

36. 410 U.S. 113 (1973) (holding that the constitutional right of privacy is broad enough to include a woman’s right to terminate her pregnancy).

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Supreme Court stated that the constitutional right of privacy existing in the penumbra of the Bill of Rights was surely broad enough to encompass an individual’s decision to decline medical treatment under certain conditions.37 The court buttressed this conclusion by articulating that the State’s legitimate interest in the preservation of human life necessarily weakens and the individual’s right to privacy grows as the extent of bodily invasion occasioned by the medical treatment increases and the patient’s prognosis dims.38 Given Karen Quinlan’s extremely poor prognosis, at least in terms of cognitive functioning, the high degree of bodily invasion involved in twenty-four hour nursing care, and the use of the respirator and feeding tube, the court asserted that the federal right to privacy would vindicate her choice, were she competent to make it, to choose not to have her life prolonged by extraordinary medical treatment.39

The extension of the right to privacy to the realm of refusing life- sustaining medical treatment was an important development in the law, but the New Jersey Supreme Court went one critical step further. It is a step that still reverberates today. The court acknowledged the difficulty of effectuating Karen’s right to choose in circumstances where she had been rendered incompetent and where her choice could not be adequately discerned from prior conversations with friends and family.40 The justices might have concluded that Karen’s privacy right could be honored only under circumstances where there was some degree of legal certainty regarding the choice she would have made were she competent, a path that many courts have taken in the intervening years.41 Instead, the court held that:

The only practical way to prevent destruction of the right is to permit the guardian and family of Karen to render their best judgment . . . as to whether she would exercise it in these circumstances. If their conclusion is in the affirmative this decision should be accepted by a society the overwhelming majority of whose members would, we

37. Quinlan, 355 A.2d at 663. The court also referenced but did not discuss the right of privacy that is contained within Art. I, paragraph 1, of the New Jersey Constitution. Id.

38. Id. at 664. 39. Id. 40. The N.J. Supreme Court concurred in the chancery court’s conclusion that Karen’s prior

statements regarding withdrawal of extraordinary treatment were too remote and impersonal and thus lacked sufficient probative weight to be given legal effect. Id. at 653, 664.

41. See, e.g., Matter of Visbeck, 510 A.2d 125, 131 (N.J. Super. Ct. Ch. Div. 1986) (holding that unless the patient, while competent, clearly indicates a personal desire to do so, treatment may not be withheld); In re A.C., 573 A.2d 1235, 1247 (D.C. 1980) (holding that whenever possible, the judge should attempt to speak to the patient and ascertain her wishes).

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think, in similar circumstances, exercise such a choice in the same way for themselves or for those closest to them.42

Thus, lacking a sufficient factual basis to make the legal determination of what choice Karen would have made regarding the withdrawal of the respirator, the court ceded its parens patriae power to Karen Ann Quinlan’s family, and more specifically to Joseph Quinlan, her father and now legal guardian.43 This decision is exactly one hundred eighty degrees from that of the chancery court, which ceded decision-making power entirely to the medical profession.44

In reaching this very different outcome, the New Jersey Supreme Court adopted a contrary view of the medical profession, one somewhat less deferential and slightly more realistic. In addressing the “medical factor,” the court ultimately rejected the chancery court judge’s proposition that societal morality rests in the hands of physicians, finding instead that the courts have a “nondelegable judicial responsibility” to decide matters before them and to reexamine underlying human rights and values when faced with new questions wrought by advances in medical technology.45 Furthermore, the court stated that judicial decisions must pay attention not only to current medical standards and practices but also to the common moral judgment of the community.46 Thus, the court accepted that then-existing medical standards supported Dr. Morse’s decision to refuse to withdraw Karen’s respirator, but questioned whether physicians sometimes failed to achieve a proper balance between curing the sick and prolonging the dying process for their patients who were being kept alive indefinitely by advances in life-sustaining technology.47

Justice Hughes postulated that physicians continued to provide medical treatment to those patients with irreversible conditions and poor prognoses both because of the enormity of the ethical decisions they were called upon to make and also out of concern for potential civil or criminal liability should withdrawal of treatment lead to a patient’s death.48 The New Jersey Supreme Court sought to assist the medical profession with these concerns, by first proposing that hospital ethics

42. Quinlan, 355 A.2d at 664. 43. See id. at 669 (holding that Quinlan’s right to privacy would be vindicated by her

guardian, her father). 44. In re Quinlan, 348 A.2d 801, 819 (N.J. Super. Ct. Ch. Div. 1975), modified and remanded,

355 A.2d 647 (N.J. 1976). 45. In re Quinlan, 355 A.2d 647, 665 (N.J. 1976). 46. Id. 47. Id. at 667. 48. Id. at 668.

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committees could share the responsibility in an advisory capacity for difficult ethical decisions.49 Second, the court reassured physicians that withdrawal of life-sustaining treatment in aid of an individual’s privacy right was lawful and could not, therefore, subject the physician to criminal prosecution or liability.50

Having completed its constitutional and philosophical exegesis, the court finally took up the question of whether the chancery court had erred in refusing to appoint Mr. Quinlan to be the legal guardian of his daughter’s person.51 Noting that the guardianship statute created an initial presumption in favor of next of kin, Justice Hughes swiftly concluded that Joseph Quinlan’s strength of character and purpose made him eminently suited for the position.52 Rather than directly authorizing the withdrawal of life support, however, the court expressly reserved that power to Mr. Quinlan, as guardian, and Karen’s family, as long as the attending physicians and hospital ethics committee agreed that there was no reasonable probability that Karen would ever return to a cognitive, sapient state.53 In a strange and sad twist of fate, when the respirator was withdrawn at Mr. Quinlan’s request following the court’s decision, Karen Ann Quinlan survived for an additional nine years, remaining throughout that time in a persistent vegetative state without self-awareness or awareness of her surroundings.54

The New Jersey Supreme Court’s decision in Quinlan was remarkably forward-looking on four grounds. First, it acknowledged that families and health-care providers had regularly been withholding or withdrawing life-sustaining treatment in accord with the express or implied wishes of patients without the sanction of civil law.55

49. Id. at 668–69. Justice Hughes articulated several grounds upon which Ethics Committee consultation would be useful in cases such as Quinlan: (1) shared and diffused responsibility with regard to difficult ethical decisions; (2) the addition of diverse views of other professionals such as social workers, theologians, and attorneys to those of physicians; and (3) the likelihood that new courses of action in aid of dying patients could be undertaken with less concern about liability and societal censure if the Ethics Committee stood behind the decision. Id.

50. Id. at 669–70. 51. Id. at 670. The court also held that termination of treatment would not be a criminal act

because “the ensuing death would not be homicide but rather expiration from existing natural causes.” Id.

52. Id. at 670–71 (“[W]hile Mr. Quinlan feels a natural grief, and understandably sorrows because of the tragedy which has befallen his daughter, his strength of purpose and character far outweighs these sentiments and qualifies him eminently for guardianship of the person as well as the property of his daughter.”).

53. Id. at 671–72. 54. McFadden, supra note 7, at A1. 55. Quinlan, 355 A.2d at 659–60 (citing with approval from Bishop Casey’s statement

regarding the gap in the law regarding cases such as Karen Quinlan’s).

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Second, it recognized that the federal constitutional right to privacy was broad enough to encompass an individual’s decision to decline medical treatment, even if that decision would lead to the individual’s death.56

Third, it refused to rest the decision whether to withdraw life- sustaining treatment exclusively in the hands of the medical profession, holding rather that an incompetent individual’s right of privacy could be asserted on her behalf by a guardian, even under circumstances where the court could not discern her wishes based on prior statements while competent.57

Finally, it emphasized that in making the decision whether to withdraw treatment in circumstances such as these, the critical inquiry turned not on an individual’s chance for mere biological existence but rather on whether there existed a reasonable medical probability that the person could return to a cognitive and sapient life.58

III. THE CASE OF NANCY BETH CRUZAN

Had courts followed the path laid down in 1976 by the New Jersey Supreme Court in Quinlan, the road over the ensuing three decades might have been a bit smoother. Instead, the United States Supreme Court took up the Cruzan case59 in 1990 and took us down a different and even more difficult path to life-and-death decision making for incompetent individuals.

Nancy Beth Cruzan was a young adult in 1983 when she lost control of her car and was thrown into a ditch, where she lay without respiratory or cardiac function for some twelve to fourteen minutes.60 Paramedics were able to restore her breathing and heartbeat at the accident site and transported her to the hospital, where she remained in a coma for three weeks, “progressed to an unconscious state in which she was able to orally ingest some nutrition,” and then regressed into a persistent vegetative state in which she would remain for the rest of her life.61 Nancy was able to breathe on her own62 but required the surgical

56. Id. at 663; see, e.g., Griswold v. Connecticut, 381 U.S. 479 (1965) (finding an constitutional right to privacy exists in the penumbra of the specific guarantees of the Bill of Rights); Roe v. Wade, 410 U.S. 113 (1993) (holding the right of privacy to be broad enough to include a woman’s decision to terminate a pregnancy in some circumstances).

57. Quinlan, 355 A.2d at 664. 58. Id. at 669. 59. Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261 (1990). 60. Id. at 266; see also William H. Colby, LONG GOODBYE: THE DEATHS OF NANCY CRUZAN

7–9 (2002) (summarizing the events leading to Nancy Cruzan’s vegetative state). 61. Cruzan, 497 U.S. at 266.

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insertion of a gastrostomy tube to receive adequate nutrition an