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The Right to Privacy and the Right to Die

  • Tom L. Beauchamp (a1)

Western ethics and law have been slow to come to conclusions about the right to choose the time and manner of one's death. However, policies, practices, and legal precedents have evolved quickly in the last quarter of the twentieth century, from the forgoing of respirators to the use of Do Not Resuscitate (DNR) orders, to the forgoing of all medical technologies (including hydration and nutrition), and now, in one U.S. state, to legalized physician-assisted suicide. The sweep of history—from the Quinlan case in New Jersey to legislation in Oregon that allows physician-assisted suicide—has been as rapid as it has been revolutionary.

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1 In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976). This case involved a brain-damaged patient in a coma. In the face of active opposition from the hospital, the physicians, state and local authorities, and a lower-court guardian ad litem, the New Jersey Supreme Court held that it is permissible for a person's guardian to direct a physician and hospital to discontinue all extraordinary measures in order to allow a person to die. After a lengthy legal battle, the parents of Karen Ann Quinlan obtained a court order allowing them to remove the respirator that was keeping their daughter alive. The court ruled that the Quinlans could disconnect the mechanical ventilator so that the patient could “die with dignity.” Unable to communicate with anyone, she lay comatose in a fetal position for ten years, with increasing respiratory problems and bedsores; her weight dropped from 115 to 70 pounds. Several Catholic moral theologians advised the parents that they were not morally required to continue the medical nutrition and hydration used to keep their daughter alive or the antibiotics used to fight her infections. However, the Quinlans believed that the feeding tube did not cause pain and that the respirator did.

2 Oregon , The Oregon Death with Dignity Act, Or. Rev. Stat. secs. 127.800–897 (1994). Measure 16 was first approved by Oregon voters in a November 8, 1994 referendum. Under its provisions, a terminally ill patient who wants to utilize physician-assisted suicide must wish to escape unbearable suffering and must request a physician's prescription for lethal drugs three times. The doctor then must wait fifteen days after the first request before writing a prescription for the requested lethal drugs. In late December 1994, a federal judge in Eugene, Oregon, issued a preliminary injunction that prevented the implementation of the new law indefinitely. Three years later, on November 4, 1997, voters rejected Measure 51, which would have repealed Measure 16, by a 60–40 margin. This reaffirmed the voters' previous support for legally allowing physicians to provide lethal medication. The 9th U.S. Circuit Court of Appeals had, one week previously, lifted an injunction that had kept Measure 16 from going into effect. A few weeks after its decisions in Vacco v. Quill, 117 S.Ct. 2293 (1997), and Washington v. Glucksberg, 117 S.Ct. 2258 (1977) (see below), the U.S. Supreme Court refused to hear an appeal involving the injunction in Quinlan, and Measure 16 was shortly thereafter reaffirmed by the voters of Oregon and became the law of their state. (Note: The 9th Circuit case mentioned above was from the state of Washington, not Oregon.)

3 In Griswold v. Connecticut, 381 U.S. 479,486 (1965), and various subsequent U.S. Supreme Court decisions, the right of privacy is held to arise from the “penumbra” of several amendments to the U.S. Constitution. The thesis is that a personal right to privacy exists because these amendments imply it.

4 These problems are examined in Schneider Carl E., “Cruzan and the Constitutionalization of American Life,” Journal of Medicine and Philosophy 17, no. 6 (1992): 589604.

5 In re Quinlan.

6 Ibid., 70 N.J. at 38–42, 355 A.2d at 662–64.

7 Ibid., 70 N.J. at 41, 355 A.2d at 664.

8 Ibid., 70 N.J. at 22–29, 35–42, 355 A.2d 653–57, 661–64.

9 See the string of cases from Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 737–40, 370 N.E.2d 417, 424–25 (1977) through Bouvia v. Superior Court, 179 Cal. App. 3d 1127, 1144, 225 Cal. Rptr. 297, 306 (1986).

10 Cruzan v. Director, Missouri Dept. of Health, 110 S.Ct. 2841 (1990).

11 Ibid. Twenty-five-year-old Nancy Cruzan had been in a persistent vegetative state for over three years. Her parents petitioned for permission to remove her feeding tube, knowing that if this were done, their daughter would die. The Missouri Supreme Court ruled that no one may order an end to life-sustaining treatment for an incompetent person in the absence of clear and convincing evidence of the patient's wishes, and the U.S. Supreme Court upheld this decision. The Supreme Court decision was followed by a hearing before a county probate judge at which three friends of Nancy Cruzan provided sufficient additional evidence that she had expressed a clear and convincing preference not to live “like a vegetable” connected to machines. This new evidence led the judge to accept the parents' request to remove the feeding tube, and thirteen days after it was removed, Nancy Cruzan died. Yet, the U.S. Supreme Court had not granted the Cruzan family precisely the relief that it had sought; the Court had declined to find a constitutional right to die, only a right of competent persons to decline life-sustaining treatments. The Court also held that it is constitutionally permissible for states to impose procedural precautions when third parties make decisions for incompetent patients. See Cruzan, 110 S.Ct., esp. at 2852.

12 Cruzan, 110 S.Ct. at 2851. The Court noted that a constitutionally protected liberty interest in such matters could be inferred from its previous decisions that reached back as far as 1905. “Freedom,” “liberty,” and “self-determination” are the terms used to ground the argument in Cruzan. The Court also noted that the Supreme Court of Missouri had recognized a right to refuse treatment that was embodied in the common law doctrine of informed consent, but had declined to read a right of privacy into the state constitution and had expressed doubt as to whether such a right existed under the U.S. Constitution. Cruzan v. Harmon, 760 S.W.2d 408, 416–18 (Mo. 1988) (en banc), cert. granted, 109 S.Ct. 3240 (1989).

13 See the Court's own explicit statement on the limits of privacy claims in the subsequent case of Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833 (1992).

14 In re Storar, 52 N.Y.2d 363, 376–77, 420 N.E.2d 64, 70 (1981).

15 Informed consent is not an ancient concept with a rich medical tradition. The term “informed consent” first appeared in a public case in Salgo v. Leland Stanford, Jr., University Board of Trustees, 317 P.2d 170 (1957). The Salgo court suggested that there is a duty to disclose the risks and alternatives of a proposed treatment, which is a logical extension of the well-established duty to disclose the treatment's nature and consequences. Serious discussion of the doctrine of informed consent began only around 1972 in Canterbury v. Spence, 464 F.2d 772 (D.C. Cir. 1972), and Cobbs v. Grant, 104 Cal. Rptr. 505, 502 P.2d 1 (1972). These courts moved in the direction of a more patient-oriented standard of disclosure in which the patient's right of self-decision requires that the patient be given sufficient information to make an intelligent choice. As the idea of informed consent evolved, discussion of appropriate guidelines moved increasingly from a narrow focus on the physician's or researcher's obligation to disclose information, to the quality of a patient's or subject's understanding of information and right to authorize or refuse a biomedical intervention.

16 In re Conroy, 98 NJ. 321, 486 A.2d 1209 (1985).

17 Compassion in Dying v. State of Washington, 79 F.3d 790 (9th Cir. 1996); Vacco v. Quill, 80 F.3d 716 (2d Cir. 1996). In the latter, at 723–24, see the court's conclusion that a right to physician-assisted suicide could not be included within the scope of the right of privacy.

18 Vacco, 117 S.Ct. at 2300–2301; Glucksberg, 117 S.Ct. at 2269–70.

19 Many believe that Dr. Jack Kevorkian has been the most significant figure in bringing these issues to public attention, though his influence is highly controversial. His acts of assisted suicide eventuated in several court decisions as well. In the same month as the Glucksberg ruling, a court in Michigan acquitted Kevorkian of charges that he violated the state's newly enacted law on physician-assisted suicide by administering carbon monoxide to a patient. A jury decision in this case found that Kevorkian did not have the relevant intention to be in violation of the Michigan law, which exempted physicians whose intent is to relieve pain or discomfort rather than to cause death. The jury found that Kevorkian had only intended to relieve the suffering of his patients. Only after he performed a direct mercy killing was Kevorkian found guilty of a crime (second-degree murder).

20 See Steinbeck Bonnie and Norcross Alastair, eds., Killing and Letting Die, 2d ed. (New York: Fordham University Press, 1994); Beauchamp Tom L., ed., Intending Death (Upper Saddle River, NJ: Prentice Hall, 1996); Malm H. M., “Killing, Letting Die, and Simple Conflicts,” Philosophy and Public Affairs 18, no. 3 (Summer 1989): 238–58; McMahan Jeff, “Killing, Letting Die, and Withdrawing Aid,” Ethics 103, no. 2 (01 1993): 250–79; and Gostin Lawrence O., “Drawing a Line Between Killing and Letting Die: The Law, and Law Reform, on Medically Assisted Dying,” Journal of Law, Medicine, and Ethics 21, no. 1 (Spring 1993): 94101.

21 Cf. Rachels James, “Active and Passive Euthanasia,” New England Journal of Medicine 292, no. 2 (01 9, 1975): 7880. See also his The End of Life: Euthanasia and Morality (Oxford: Oxford University Press, 1986); and Brock Dan W., “Voluntary Active Euthanasia,” Hastings Center Report 22, no. 2 (03/04 1992): 1022.

22 See Callahan Daniel, “Vital Distinctions, Mortal Questions: Debating Euthanasia and Health Care Costs,” Commonweal 115, no. 13 (07 15, 1988): 397404; Callahan Daniel, The Troubled Dream of Life (New York: Simon and Schuster, 1993), chap. 2; and several articles in Lynn Joanne, ed., By No Extraordinary Means (Bloomington, IN: Indiana University Press, 1986), 227–66.

23 It is not absurd to say that a physician's actions physically cause death even when he or she forbears from treatment as a result of a patient's refusal. The actions of physicians are commonly necessary parts of sufficient conditions of a death as it occurs. For example, to withhold nutrition and hydration so that a patient dies of malnutrition is a necessary part of a sufficient condition of death at the time and in the way the death occurs. The doctor is not a sufficient cause of death but is a necessary part of a sufficient set of conditions of death. If the patient is suffering from conditions such as severe brain damage or cancer, these conditions are neither necessary nor sufficient conditions of death in the way it comes about. In many cases, both a physician's intervention and a disease, system failure, or injury are joint causal conditions of death. In a few more uncommon cases, multiple causal conditions may be relevant, each forming an independent causal sequence that is sufficient to cause death. That is, any one of several distinct sequences of causally linked events may be sufficient to cause death.

24 On the importance of the refusal/request distinction, see Bernat James L., Gert Bernard, and Mogielnicki R. Peter, “Patient Refusal of Hydration and Nutrition,” Archives of Internal Medicine 153, no. 24 (12 27, 1993): 2723–28; Gert , Bernat , and Mogielnicki , “Distinguishing between Patients' Refusals and Requests,” Hastings Center Report 24, no. 4 (07/08 1994): 1315; and Gert et al. , “The Distinction between Active and Passive Euthanasia,” Archives of Internal Medicine 155, no. 12 (06 26, 1995): 1329.

25 A physician who in principle accepts the permissibility of active aid-in-dying may legitimately refuse to honor any particular request for aid-in-dying for various reasons. For example, a sympathetic physician willing to assist a patient at a crisis point may refuse a patient's request for lethal medication if that request is premature.

26 Cf. Buchanan Allen, “Intending Death: The Structure of the Problem and Proposed Solutions,” in Beauchamp , ed., Intending Death, 3438; Nagel Thomas, “Death,” in Nagel, Mortal Questions (Cambridge: Cambridge University Press, 1979); and Kamm F. M., Morality, Mortality, vol. 1 (New York: Oxford University Press, 1993), chap. 1.

27 Several years after Nancy Cruzan died, Joseph Cruzan killed himself. He had suffered a long period of depression.

28 Some definitions of privacy center on a narrow range of conditions under which intrusions constitute losses of privacy, whereas other definitions center on a broader range of conditions. Some definitions view privacy as a condition of the person, others as a condition of control by the person over access to information, Some definitions place a value on privacy, others do not. See Powers Madison's survey of several definitions of privacy in “A Cognitive Access Definition of Privacy,” Law and Philosophy 15, no. 4 (11 1996): 369–86; and Allen Anita L.'s examination of restricted-access definitions in Uneasy Access: Privacy for Women in a Free Society (Totowa, NJ: Rowman and Littlefield, 1988). See also Westin Alan F., Privacy and Freedom (New York: Athenaeum, 1967); and the critique by Schoeman Ferdinand David, “Privacy: Philosophical Dimensions of the Literature,” in Schoeman , ed., Philosophical Dimensions of Privacy: An Anthology (New York: Cambridge University Press, 1984), 34.

29 Cf. Gavison Ruth, “Privacy and the Limits of Law,” Yale Law Journal 89, no. 3 (01 1980): 428. (Gavison's article is reprinted in Schoeman , ed., Philosophical Dimensions of Privacy, 346402.)

30 Suffice it to say, here, that personal autonomy carries over the ideas of a region of sovereignty for the self and a right to protect it by restricting access, ideas that are closely linked to the concepts of privacy and the right to privacy. Cf. Feinberg Joel, Harm to Self, vol. 3 of The Moral Limits of the Criminal Law (New York: Oxford University Press, 1986), chap. 19. The idea that certain forms of self-determination are immune from social control has made the legal right of privacy controversial throughout its history. The U.S. Supreme Court has sometimes hinted that the right to privacy is primarily a right of self-determination in decision-making, a right on which clear boundaries must be placed. See Whalen v. Roe, 429 U.S. 589, 599–600 (1977).

31 Kass Leon, “Is There a Right to Die?Hastings Center Report 23, no. 1 (01/02 1993), reprinted in Beauchamp Tom L. and Walters LeRoy, eds., Contemporary Issues in Bioethics, 5th ed. (Belmont, CA: Wadsworth, 1999), 352 n. 10.

32 Cf. Rachels James, The End of Life, chap. 10; Arras John, “The Right to Die on the Slippery Slope,” Social Theory and Practice 8, no. 3 (Fall 1982): 285328; van der Burg Wibren, “The Slippery Slope Argument,” Ethics 102, no. 1 (10 1991): 4265; Macklin Ruth, “Which Way Down the Slippery Slope? Nazi Medical Killing and Euthanasia Today,” in Caplan Arthur L., ed., When Medicine Went Mad: Bioethics and the Holocaust (Totowa, NJ: Humana Press, 1992), 173200; Burgess J. A., “The Great Slippery-Slope Argument,” Journal of Medical Ethics 19, no. 3 (09 1993): 169–74; and Walton Douglas, Slippery Slope Arguments (Oxford: Clarendon Press, 1992).

33 See Singer Peter A. and Siegler Mark, “Euthanasia—A Critique,” New England Journal of Medicine 322 (06 28, 1990): 1881–83; Lynn Joanne, “The Health Care Professional's Role When Active Euthanasia Is Sought,” Journal of Palliative Care 4, nos. 1 and 2 (05 1988): 100102; Wolf Susan, “Holding the Line on Euthanasia,” Hastings Center Report 19, no. 1 (01/02 1989): S13S15; Kass Leon R., “Neither for Love Nor Money: Why Doctors Must Not Kill,” Public Interest 94 (1989): 2546; Hendin H. and Klerman Gerald, “Physician-Assisted Suicide: The Dangers of Legalization,” American Journal of Psychiatry 150, no. 1 (01 1993): 143–45; Ogilvie Alan D. and Potts S. G., “Assisted Suicide for Depression: The Slippery Slope in Action?: Learning from the Dutch Experience,” British Medical Journal 309, no. 6953 (08 20–21, 1994): 492–93; Devettere Raymond J., “Slippery Slopes and Moral Reasoning,” Journal of Clinical Ethics 3, no. 4 (Winter 1992): 298; Orentlicher David, “Physician Participation in Assisted Suicide,” Journal of the American Medical Association 262, no. 13 (10 6, 1989): 1844–45; and Koop C. Everett and Grant Edward R., “The ‘Small Beginnings’ of Euthanasia: Examining the Erosion in Legal Prohibitions against Mercy-Killing,” Notre Dame Journal of Law, Ethics, and Public Policy 2, no. 3 (Spring 1986): 585634.

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