WITHHOLDING LIFE-PROLONGING MEDICAL TREATMENT FROM THE INSTITUTIONALIZED PERSON - WHO DECIDES? f

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1 WITHHOLDING LIFE-PROLONGING MEDICAL TREATMENT FROM THE INSTITUTIONALIZED PERSON - WHO DECIDES? f Kathleen A. Corbett Robert M. Raciti *** I. INTRODUCTION People suffering from a terminal illness rarely die at home. The success of modern medicine has shifted the locus of dying to hospitals and other similar public or private facilities. Thus, control of treatment has shifted away from the patient and his family to the hospital and the state. 1 "This has been a tacit accommodation to the way health sciences treat the dying, rather than an explicit legal choice." 2 As medical technology has developed sophisticated life support systems capable of sustaining physical life indefinitely, *EDITORS' NolE: Although this article does not deal with the subject of the right to refuse treatment in a prison context, the editors believe that the article addresses issues equally applicable to the prison setting. Prison inmates are in many ways anilagous to incompetent patients in state institutions. As wards of the state, they must look to the state for medical decisions regarding the right to refuse treatment. The same due process considerations and right to privacy exist for the inearcerated inmate as for other members of society. f We wish to express our deep appreciation to Mr. William 3. O'Neil, Esq., Executive Director of the Mental Health Legal Advisors Committee. His thoughtful analysis of the many difficult issues in mental health law, especially those presented in the Baihewicz case, has been our model. We would also like to acknowledge Mr. Harold Robertson, whose analysis of that case was a valuable contribution to this article. ** Staff worker for the Mental Health Legal Advisors Committee, Boston, Massachusetts; candidate for J.D., New England School of Law, June 1977; M.A., San Francisco State College, 1970; B.A., University of New Hampshire, *** Staff worker for the Mental Health Legal Advisors Committee; candidate for J.D., New England School of Law, June 1977; M.A., Hofstra University, 1974; B.A., State University of New York at Stony Brook, The authors participated in the preparation of the amicus brief submitted by the Mental Health Legal Advisors Committee in Jones v. Saikewicz, discussed infra. 1 E. K ubler-oss, Ox DEATH AxD DYiNG, 5-7 (1969). 2 C. Montange, Informed Consent and the Dying Patient, 83 YAz. L. J (1974).

2 48 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 the questions regarding who has the right to refuse or to discontinue extraordinary treatment have demanded definitive answers. Does the hospitalized patient have the right to refuse life saving or life prolonging medical treatment? 3 More difficult, perhaps, is the, question concerning who, if anyone, has the legal authority to refuse treatment for the incompetent or unconscious patient. To date, the procedures which have evolved through several landmark cases have failed to adequately safeguard the constitutional rights to life and to privacy of the incompetent, terminally ill patient. This article will attempt to explore these inadequacies and to suggest some alternatives more likely to protect these basic constitutional rights. II. Tns PHYsiciA's CIVIL AND Cm IIxAL LiAsn= rr WIMHOLDING TREATMENT: PASSIVE EUTHANASIA oi A patient's assertion of the right to refuse life saving or life prolonging treatment is a situation which has become increasingly more common in the hospital setting. It is becoming increasingly more common for the terminally ill patient to either refuse life prolonging treatment or request that treatment be discontinued. When the terminally ill patient is unconscious, or otherwise incompetent, family members may request that life prolonging treatment be terminated. Compliance with the wishes of the patient or family, however, presents vast legal complications for both the physician and the hospital. Failure to administer treatment may leave the medical staff liable for malpractice. When the failure to render treatment results in the patient's death, despite the fact that it may have been the express wish of the patient, the medical staff faces the possibility of civil liability under wrongful death statutes, and criminal liability under homicide statutes. Euthanasia, a broad term which encom- 3 Id. at 1632.

3 1976] WITHHOLDING MTEDICAL TREATMENT passes any killing done with the motive of relieving the patient of a painful existence 4 is generally associated with an affirmative act. However, the term is also used to describe mercy killings which are achieved by omission to act. Failure to continue necessary medical treatment is generally defined as passive euthanasia. 5 The problem of euthanasia can be viewed as a spectrum of situations, each reffuiring implementation of the patient's right to be the decisionmaker concerning his own future. First is the non-terminal patient confronted with the alternatives in seeking treatment. Second is the terminal patient deciding whether to submit to life sustaining therapy. Third is the terminal patient who requests the discontinuance of lifesustaining treatment. Last is the terminal patient -equesting that his life be shortened by the administration of a death inducing agent.' Every civilized legal system considers euthanasia a crime, although most legal systems make it a less serious offense than the Anglo-American. 7 The reason for this is that the common law regards life as sacred and inalienable 8 and the criminal law reflects this basic philosophy. 9 The common law defines murder as the killing of another with malice aforethought. Because of the state's deep concern in the preservation of life at all costs, any unjustified taking of life is regarded as murder "no matter how kindly the motive." 10 As long as the killing is done with malice, a term merely meaning the intent to take life, the crime is murder. In a recent 4W.JH. Boughman, T. Bruha & P. Gould, Euthanasia: Criminal, Tort, Constitutional, antd Legislative con siderations, 48 NOTE D,'A LAwYER 1202, 1203 (1973). 5 Id. at Moutange, supra note 4, at Boughman, Bruba & Gould, supra note 4, at State v. Moore, 25 Iowa 128 (1868). 9 Boughman, Bruba & Gould, supra note 4, at State v. Ehlers, 119 A. 15, 17 (N.J. 1922); Boughman, Bruha & Gould, supra note 4, at 1204.

4 50 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 American case concerning euthanasia People v. Conley" the court addressed itself to the common law tradition and stated: [O]ne who commits euthanasia bears no ill will toward his victim and believes his act is morally justified, but he nonetheless acts with malice if he is able to comprehend that society prohibits his act regardless of his personal belief. 1 2 Furthermore, the common law philosophy that life is inalienable precludes any individual from giving consent to the taking of his life. Kindliness of motive, consent, or request of the patient in no way mitigates the crime or is a valid defense. Thus, special factors which diminish euthanasia from more reprehensible forms of killing such as the humanitarian motive, consent of the patient, or the patient's hopeless and painful condition are irrelevant extenuating factors in the eyes of the law. This common law belief in the sacredness of life is so absolute and pervasive that it protects those whose death is imminent even if they request death. The life of those to whom life has become a burden-of those who are hopelessly diseased or fatally wounded... are under the protection of the law equally as the lives of those who are in the full tide of life's enjoyment. 13 The Anglo-American tradition is clear. As long as the least spark of life remains, any positive act to extinguish it is criminal. 14 One who acts to shorten the life of a hopelessly ill patient is guilty of murder in the first degree. 5 However, there is great disparity between the theory and practice of euthanasia in the criminal law.'" Prosecutions for euthanasia are rare; despite evidence that euthanasia by omission is widely practiced.' 7 Those cases which do arise seldom P. 2d 911 (Cal. 1966). 12 Id. 13 Blackburn v. State, 23 Ohio St. 146, 163 (1872). 1 4 D. Horan, Euthanasia, Medical Treatment, and the Mongoloid Child: Death as a Treatment of Choice, 27 BAYLOR L. REV. 76, 79 (1975). 15 Boughman, Bruha & Gould, supra note 4 at Id. at 1228.

5 1976] WITHHOLDING MEDICAL TREATMENT result in convictions. Persons who assist terminally ill patients to end their own lives come under the scrutiny of the criminal law only if their actions are detected. However, even if detected, the state seldom prosecutes such individuals to the fullest extent under law. Either the grand jury refuses to indict, the case is acquitted upon an insanity defense, the jury refuses to bring in a guilty verdict or the defendant is convicted upon a lesser charge. 18 Consequently, few appeals are taken and the courts are seldom afforded the opportunity to discuss the issue. 9 The dichotomy between the theoretical approach to euthanasia and the actual approach of the states presents several problem areas regarding constitutional safeguards to individual rights. From the point of view of the terminally ill suffering patient who desires a premature death, the practice of euthanasia by omission may be just 0 However, from the perspective of patients who are unwilling or unable to give consent to premature termination of their lives, the practice of not dealing with the perpetrators as the law provides might be viewed as removal of standards which adequately protect life by state action-a violation of both due process and equal protection. 21 From the point of view of the medical staff, however, punishment to the fullest extent provided by lawgiven the nature of the offense and less severe penalties exacted in most American jurisdictions and other civilized societies-might very well constitute unconstitutional cruel and unusual punishment. 2 Recent proposals before state legislatures to legalize euthanasia indicate an interest in resolving the conflict between the 17 P. Foreman, Physicians' Crimnal Lability for the Practice of Euthanasia, 27 BAYIOr L. Ruv. 54, 61 (1975). 1 8 Boughman, Bruha & Gould, supra note 4, at Ia. 20 Foreman, supra note 17, at Boughman, Bruha & Gould, supra note 4, at Kutner, Due Process of Euthanasia: The Living Will, A Proposal, 99 IND. L. J. 539, 549 (1969).

6 52 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 theoretical and practical treatments by state law. 2 8 Legislatures may well redefine the rights of terminally ill patients to afford them more control over their own existence. However, if that legislation includes provisions for terminating the lives of those unable to give consent, lawmakers must consider the mandate of the Fourteenth Amendment regarding the taking of life without due process of law. Recently the New Jersey Supreme Court and the Supreme Judicial Court of Massachusetts have been directly presented with cases which concern the rights of the terminally ill incompetent patient. Both courts have had the opportunity to define the rights of these patients and the procedural safeguards necessary to protect those rights. III. Two CONTEMPORARY CASES: QuINLAN 24 AND SAIKVIOZ 25 A. Matter of Quinlan Karen Ann Quinlan, a twenty-two year old hospitalized patient, was in a comatose state and receiving life support treatment on a mechanical respirator. The medical diagnosis indicated that Ms. Quinlan was functioning in a vegetative state. There was no evidence of any sapient brain activity and the likelihood of recovery was minute, at best. The patient's father petitioned the court to be appointed guardian over his daughter. His petition expressly requested the court to grant him-as the legal guardian-the power to discontinue the extraordinary medical treatment being administered to his incompetent daughter. The New Jersey Supreme Court held that the legal guardian of the incompetent patient can authorize the discontinu- 23 Boughman, Bruha & Gould, supra note 4, at 1228, n See, e.g., HXB Fla. Legislation (1971); S.B. 670, S.B. 715 Wis. Legislation (1971); and 1976 Calif. Legislation based on Kutner's The Living Will, supra note Matter of Quinlan, 70 N.J. 10, 355 A. 2d 647 (1976). 25 Jones v. Saikewiez, - Mass. -, Civil No , (Hampshire County Probate Court, No , filed May, 1976).

7 1976] WITHHOLDING MEDICAL TREATMENT ance of extraordinary medical treatment. 2 6 The court set forth certain objective criteria with which the legal guardian must comply before the action can be taken. 27 The court directed that the guardian must apply the doctrine of substituted judgment. 2 The application of this doctrine was to be considered in conjunction with the wishes of the patient's family, the medical recommendations and the advice of the hospital ethics committee. 29 In granting the guardian the authority to refuse continuation of extraordinary treatment, the court by declaratory judgment, released the hospital and medical staff from any civil or criminal liability which might arise from their failure to treat. 0 In Quinlan the basic issues which had to be faced concerned the individual's right to privacy and self-determination balanced with the right to life as defined in the Fourteenth Amendment and the state of New Jersey's criminal homicide code. B. Jones v. Baikewicz 31 Recently the Supreme Judicial Court of Massachusetts had the opportunity to decide a similar case. However, the factual circumstances surrounding the case put vastly different issues before the court. Mr. Saikewicz, a sixty-seven year old profoundly retarded man, had been a resident of Belchertown State School, a public facility for retarded persons, for fifty years. He was functioning on a developmental level of less than three years and had an I.Q. of 10. Mr. Saikewicz had a sister, who, although she wanted her brother to be well taken care of, refused to accept legal responsibility for him. Therefore, this individual had lived his entire adult life in a state 26 Matter of Quinlan, 70 N.J. 10, at 55 (1976). 2 7 Id. 2 8 Id. at I7. 80 Id. BlJones v. Saikewiez, - Mass. -, Civil No , (Hampshire County Probate Court, No , filed May, 1976).

8 54 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 institution dependent upon the state for food, shelter, education, and general welfare. Although never adjudicated incompetent, he was, nonetheless, functioning at the lowest level of adaptive behavior and was incapable of making a reasoned decision concerning his own welfare. In the spring of 1976 it was discovered that Mr. Saikewicz was suffering from acute leukemia. Belchertown State School petitioned the probate court pursuant to Massachusetts law, seeking the appointment of a guardian. The petition alleged that the degree of retardation at which Mr. Saikewicz was functioning rendered him incompetent to give informed consent to the medical treatment for leukemia- in this case chemotherapy. Although the petitioners doubted the patient's ability to provide legally competent consent to the chemotherapy treatment, it is interesting to note that in his fifty years at Belchertown, the patient presumably received treatment for other physical problems, yet he never had a legal guardian to give informed consent to those treatments. The legality of such action is highly questionable. 2 The probate court appointed a guardian ad litem, rather than a general guardian, who was to have the authority to consent to the chemotherapy treatment. The guardian ad litem undertook his responsibility with great seriousness, sincerity and humanity. He visited with the patient and assessed the patient's inability to cooperate with the medical staff. The guardian ad litem interviewed medical personnel and discovered the following facts which are part of the record. The chemotherapy treatment is painful, often has severe side effects, and administration of the treatment requires cooperation from the patient. If Mr. Saikewicz did not receive the treatment, the medical prognosis was that he would suffer a painless death in two or three months. If he did receive the treatment, the chances of 82 Amicus Curie Brief of Mental Health Legal Advisors Committee at 1, Tones v. Saikewiez, - Mass. -, Civil No , (Hampshire County Probate Court, No , filed May, 1976); Note, Developments in Law, Civil Commitment of the Mentally Ill, 87 HARv. L. RBV (1974).

9 1976] WITHHOLDING MEDICAL TREATMENT survival would be increased from about thirteen months to a period of between two to six years. The court record indicated that one doctor stated that the side effects of the treatment were so drastic that if his own father were in the position of Mr. Saikewicz, he (the doctor) would not consent to treatment but would prefer to have him die painlessly. However, the court record also indicated that most competent patients in Mr. Saikewicz's position elect to receive treatment and prolong life. The guardian ad litem followed the medical advice and refused to give consent for the necessary treatment. The probate court accepted the guardian ad litem's refusal of consent and appealed directly to the Supreme Judicial Court of Massachusetts for review. The issues on appeal were whether or not such action was within the scope of authority of the probate court and whether or not the procedures followed were legally sufficient. The Supreme Judicial Court unanimously upheld the lower court's authority to allow non-treatment for the retarded terminally ill individual but the opinion regarding the procedural aspects has yet to be released. Mr. Saikewicz died, apparently painlessly, on September 4, The issues presented in this case are significantly different from those faced in New Jersey in Quinlan. Mr. Saikewicz was incompetent to make a decision because of profound retardation. Unlike Quinlan, he never had been, and never would be able to make a reasoned or abstract decision concerning his own welfare. The Massachusetts court had no factual basis to make a determination as to what Mr. Saikewicz's wishes or desires would be. Second, and again unlike Quinlan, Mr. Saikewicz was not living in a vegetative state, rather he was functioning in a sapient state. His cognitive capacity and level of adaptive behavior, although seriously diminished, were nonetheless normal for him. Third, the proposed chemotherapy treatment is ordinary, standard medical care for leukemia, whereas in Quinlan, the patient was being kept alive by extraordinary measures.

10 56 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 Medical technology has advanced to keep patients like Quinlan alive indefinitely. Also, medicine can now treat and cure the numerous physical disabilities that usually accompany mental retardation. The result of this is that retarded persons - who generally used to suffer early deaths- are now enjoying lengthened life spans. Thus, the elderly retarded person is now entering the public health system with serious diseases which require competent, informed consent for the administration of the appropriate treatment. Currently there are no legal safeguards to insure that treatment which is available and chosen by competent people is not categorically denied to retarded persons because of their retardation or their supposed inability to cooperate.8 3 Nor should any incompetent patient be subjected to painful, life-prolonging treatments which he or she may not wish to endure, and if competent, would refuse. Consistent legal guidelines are necessary because not only are the patient's constitutional rights to life and to privacy at stake, but also the hospital and medical staff desperately need to know the limits of their legal duty to the patient and their civil or criminal liability for non-treatment. IV. THE INDIVIDUAL PATIENT'S RIGHT TO REFUSE TREATMENT MAY BE CONSTITUTIONALLY BASED ON THE RIGHT TO PRIVACY Before undertaking a discussion of whether or not a third person can refuse treatment for the incompetent patient, the following discussion will focus on the constitutional basis of the competent patient's right to refuse treatment. A. Right to Refuse Treatment: The Competent Person Analysis of the case law regarding the patient's right to refuse life-saving or life-prolonging treatment appears conflicting. For example, in a New York case, Petition of Nemser, 3" the judge refused to intervene in a dispute over the treatment 33 R. Knox, Medical Reporter, Boston Globe, July 12, 1976, at Misc. 2d 616, 273 N.Y.S. 2d 624 (Sup. Ct. 1966).

11 1976] WITHHOLDING MEDICAL TREATMENT 57 of an eighty year old patient suffering from gangrene; the patient's refusal of the operation prevailed. In Long Island Jewish Hillside Medical Center v. Levitt,r another New York case, the judge appointed a guardian to consent to an operation on an eighty-four year old suffering from gangrene although the operation was against the wishes of the patient." 6 However, despite these inconsistencies, analysis of the cases with respect to the right to refuse treatment has led these authors to believe that the right to refuse life-saving or life-prolonging treatment may be based on the constitutional right to privacy" and self-determination. 8 Recent cases utilizing the right to privacy to uphold personal liberties indicate the recognition of the right to control one's body. 9 In Erickson v. Dilgard' 0 the court upheld the patient's right to refuse life-saving treatment. The court asserted that the individual must be free to make a medical decision, as long as he is competent tb do so. 41 Also in Palm Springs General Hospital Inc. v. Martinez, 42 the court refused the hospital a petition for a court order requiring an elderly woman to have a minor operation to prepare her for a life prolonging blood transfusion. The court stated that a competent adult could not be forced to endure unwanted treatment even if the best medical advice considered the recommended treatment necessary to prevent death. In In re Osborne, 48 the court upheld the patient's right to refuse a lifesaving blood transfusion on religious grounds. However, a strong concurring opinion emphasized that the court's decision Misc. 2d 395, 342 N.Y.S. 2d 356 (Sup. Ct. 1973). 3 6Boughman, Bruha and Gould, supra note 4; T. H. Sharp Jr. & T. H. Crofts Jr., Death with Dignity, The Physiins Civil Liability, 27 BAmY-oR L. REv. 86 (1975).. 37 Griswald v. Conn., 381 U.S. 479 (1965). 88 Nathanson v. Kline, 350 P.2d 1093, rehearing denied, 354 P.2d 670 (Kan. 1960); Roe v. Wade, 410 U.S. 113 (1973). 9 Id Misc. 2d 27, 252 N.Y.S.2d 705 (1962). 41 I. 42 Case # , Cir. Ct. of Dade County Fla. (July 2, 1971) A.2d 372 (D.C. App. 1972).

12 58 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 could be justified on "the broader based freedom of choice." " These decisions express the belief that the patient should be able to make decisions refusing treatment without interference from the government. 45 The constitutional right to privacy -which gives rise to any rights to control over one's body-may be limited upon a showing of a compelling state interest by the state as to why refusal of treatment should be denied and treatment administered." Furthermore, it should be noted that the court in Roe v. Wade 47 expressly refused to hold that the right to privacy includes the unlimited right of self-determination to do with one's body as one chooses. The question remains, however, as to what interests can be considered compelling. The right to privacy established in Griswold as a fundamental constitutional right, enjoys equal constitutional status with First Amendment rights. The right to free exercise of religion has been judicially recognized as a constitutional source of the right to reject medical treatment -even when death is the inevitable result. 48 Therefore, any state interest compelling enough to overcome the constitutional right of free religious exercise would also be sufficient to outweigh liberties asserted under the right to privacy. In the Georgetown College case 49 the Court of Appeals for the District of Columbia Circuit upheld a court order requiring a woman to submit to a blood transfusion. The proposed treatment was standard medical practice in treating her illness and was necessary as a life-saving measure. The patient had refused the treatment on religious beliefs which forbade such treatment. In upholding the order compelling treatment, the 4 4 Id. at 376; see also, Boughman, Bruha & Gould, supra note 4, at Boughman, Bruha & Gould, supra note 4, at Poe v. Menghini, 339 F. Supp. 986, 993 (D. Kan. 1972) U.S. 113 (1973) A.2d 372 (D.C. App. 1972). 49 Application of President and Directors of Georgetown College, Inc., 118 U.S. App. D.C. 80, 331 F.2d 1000, reh. den., 118 U.S. App. D.C. 90, 331 F.2d 1010, cert. denied, 337 U.S. 978 (1964).

13 1976] WITHHOLDING MEDICAL TREATMIENT court set forth its reasons which served as a compelling state interest sufficient to overcome fundamental rights. The court stated that the patient was "in extremis" and hardly "compos mentis" when refusing treatment, thus raising doubts as to her competency to refuse the treatment. The court also noted that the patient was the mother of minor children who might become wards of the state if rejection of treatment resulted in the patient's death. The third major concern of the court was that the hospital and medical staff had to be protected from potential criminal liability for letting a patient die without rendering treatment. Similarly, in United States v. George, 50 on facts similar to Georgetown College the court upheld the government's motion to authorize a blood transfusion for a father of four children who had refused the treatment on religious grounds. Again, the proposed treatment was standard medical practice and necessary to save the patient's life. The court held that the individual's right to refuse treatment on religious beliefs was not absolute."' The state's overriding compelling interest was respect for the doctor's professional oath and respect for the physician's professional judgment to do that which his responsibility requires. 52 In John F. Kennedy Memorial Hospital v. Heston, 53 it was determined that the patient-who suffered from a ruptured spleen- would die unless a blood transfusion was administered. The treatment is standard medical practice for the illness and a life saving procedure. Because the patient r~fused the treatment on religious grounds, the court appointed a guardian who consented to the treatment. On appeal, the Supreme Court of New Jersey upheld the lower court's order. As in George, the court was concerned with respect for the physician's judgment. The court noted also that failure to use a simple, F. Supp. 752 (D. Coun. 1965). 51 Ad. at Il., see also Boughman, Bruha & Gould, supra note 4, at N.J. 576, 279 A.2d 670 (1971).

14 60 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 common, and established medical procedure would be malpractice. The hospital and staff should not be required to make a decision as to whether the patient is competent to make a judgment or whether the release offered by the patient will protect the physicians from liability. In upholding the order of the lower court, the New Jersey court stated, "The solution sides with life, the conservation of which is, we think, a matter of state interest." 54 The courts, as illustrated in the above cases, have recognized and defined certain compelling state interests which override the individual patient's right to control his or her own body. As the cases involving blood transfusions and religious beliefs demonstrate, the most compelling state interest where patients refuse lifesaving standard medical treatment, i.e. ordinary treatment, is preserving the sanctity of human life. Recent case law has provided some rationales for permitting the refusal of ordinary medical treatment without which the patient would die. In Erickson 5 the court refused to equate the patient's decision to refuse treatment with suicide. The New York Court emphasized that whether or not a medical decision is correct is always a question of judgment. Refusal of treatment by the patient was not a showing of disregard for the sanctity of life but rather entrusting his life to the forces of nature. 55 The opinion supported the right of the patient to make the decision whether or not to accept the recommended treatment as essential to the protection of individual rights. Two cases, In re Estate of Brooks, 5 7 and Martinez," present a direct challenge to the state's compelling interest to preserve 54 Id. at 675. It should also be noted that the patient in Heston was pregnant and the court felt that the life of the fetus was a state interest compelling enough to override the fundamental religious beliefs of the mother. This may be overruled, at least in part, by Roe v. Wade, 410 U.S. 113 (1973) Misc.2d 27, 252 N.Y.S.2d 705 (1962). 56 Boughman, Bruha & Gould, supra note 4, at Ill.2d 361, 205 N.E.2d 435 (1965). 58 Case # , Cir. Ct. of Dade County Fla., (July 2, 1971).

15 1976] WITHHOLDING MEDICAL TREATMENT the sanctity of life. Both decisions - involving elderly persons who had refused ordinary treatment - essentially held that the sanctity of life is not endangered when dying patients choose a peaceful death over a prolonged painful life. 9 In the Osborne case, 60 a thirty-four year old patient refused to give consent to a transfusion on religious grounds. In reversing the lower court's granting of the hospital's petition, the court stated that judicial intervention with respect to the wishes and religious beliefs of the competent patient was unwarranted. The court expressly refused to follow the view of the court in ffeston 61 that the state has a compelling interest in sustaining life. Rather, the court in Osborne stated that: [t]he notion that the individual exists or the good of the state is, of course, quite antithetical to our fundamental thesis that the role of the state is to insure a maximum of individual choice and conduct. 62 The right of control over one's own body seems to enjoy some constitutional protection under the right of privacy. The state may limit this right, however, upon showing of a compelling state interest. This interest, however, may not be so substantial when examined in light of those who are suffering from an incurable disease or terminal illness. American society strongly affirms the sanctity of human life. Therefore, the assertion of a fundamental right probably would not keep the state from prohibiting terminal patients from actively employing measures to prematurely terminate life. 64 These patients may, however, enjoy the right to refuse both ordinary and extraordinary medical treatments designed only to prolonging life. As Martinez and Estate of Brooks demonstrate, the dying person's refusal of ordinary (standard-medical) treatment pre- 5 9 Boughman, Bruha & Gould, supra note 4, at A.2d 372 (D.C. App. 1972) N.J. 576, 279 A.2a 670 (1971). 62 Ia. at Furman v. Georgia, 408 U.S. 238, 286 (1972) (Brennan, J., concurring). 64 Boughman, Bruha & Gould, supra note 4, at 1242.

16 62 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 sents no threat to the sanctity of life significant enough to warrant state intervention." That the terminally ill or incurable patient may refuse extraordinary treatment is established. 6 In Matter of Quinlan, the evidentiary factor which was significant to the Supreme Court of New Jersey was that refusal of such treatment was the desire of the patient, expressed when she was competent. That refusal of extraordinary medical treatment does not endanger the sanctity of life can also be shown by looking at the pronouncements of the Roman Catholic Church, one of the most vigorous advocates of "right to life" in the United States. Pope Pius XII, in 1957, addressing a group of physicians, stated that Christian ethics do not demand the administration of extraordinary treatment to dying patients. This statement ineludes the termination of extraordinary procedures already begun as well as refusing those not yet undertaken.1 7 B. Right to Refuse Treatment: The Incompetent Person The above cases all assume that the individual is competent to refuse treatment. When the individual is incompetent a serious difficulty arises. "Who besides the individual who is dying should be allowed to decide whether or not the individual should submit to medical treatment at all, or to withdraw from treatment that can only prolong and cannot preserve life?" 6 In Matter of Quinlan, 69 the court held that the guardian, by applying the doctrine of substituted judgment, could authorize the termination of extraordinary treatment. The guardian's decision would have to be made in accordance with the mutual agreement of the patient's family, physicians and the hospital 65 Id. at Matter of Quinlan, 70 N.J. 10, 355 A.2d 647 (1976). 67 Boughman, Bruha & Gould, supra note 4, at 1248; Matter of Quinlan, 70 N.J. 10 (1976), 355 A.2d 647; New York Times, Nov. 25, 1957, at 1, col S.M. Stewart, The Problem of Prolonged Death: Who Should Dec de, 27 BAY- LOR L. REv. 169, 171 (1975) N.J. 10, 355 A.2d 647 (1976).

17 1976] WITHHOLDING MEDICAL TREATMENT ethics committee. The court expressly stated that if these guidelines were followed there was no need for further judicial involvement. If death resulted from the authorized discontinuance of treatment, the hospital and medical staff would be free from either civil or criminal liability. In the Saikewicz case, the Massachusetts court appointed a guardian ad litem who was to give the necessary consent to treatment, but who instead withheld treatment. The balance of this article will be directed to why the legal procedures in Quinlan and in Saikewicz are insufficient to adequately protect the constitutional rights of the incompetent patient. The underlying principal is the appointment of a general guardian and the application of the doctrine of substituted judgment. The ultimate failing in both Quinlan and Saikewicz is that both courts failed to adequately supervise the process through which life extending treatment would be denied to an incompetent patient. Such an abdication of supervision raises some fundamental questions regarding the patients' right to due process protection from decisions which hasten his or her death. V. THE CASE FOB COVT INVOLVEMENT A. History of Substituted Judgment The concept of substituted judgment can be traced to roots in early nineteenth century estate law. The doctrine was developed in response to a need to ascertain the wishes of decedents whose intentions as to the disposition of certain property could not be determined from the available evidence. Substituted judgment became a convenient process whereby a court could: [d]on the mental mantle of the incompetent and to substitute itself as nearly as may be for the incompetent, and to act

18 64 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 upon the same motives and considerations as would have moved her. 70 The gradual extension of the doctrine to other areas of law occasioned the recognition of its usefulness in the realm of medical treatment for incompetent patients. For example, a minor often becomes the only feasible donor for an organ transplant to his ill sibling. In such a situation, the removal of an organ from the healthy donor to the ailing sibling requires more than the mere consent of their parents or guardians. A court can avail itself of the concept of substituted judgment in order to determine what the incompetent donor would choose if he or her were competent. Thus, in Strunk v. Strunk, 7 1 the decision to transplant a kidney from a retarded adult to his ailing brother turned on whether such a decision would be in the best interests of the incompetent person. The court, in substituting judgment for the incompetent individual expressed its belief that he valued the companionship of his brother to such an extent that the loss of a kidney and the risk of surgical complications were overshadowed by the benefit he would derive through extending his brother's life. The court, in fact, placed much weight on the fact that the incompetent individual was emotionally dependent upon his brother and as such would clearly undertake this particular risk if he were competent to so decide. The instructive element in the Strunk case, for the purposes of the present discussion, is that sufficient attention was paid to the individual situation and value system of the incompetent person in order to make an assessment of his probable consent under the particular facts. This is consistent with the notion that maximum attention and respect must be accorded an incompetent person faced with a medical choice in which he or 70 J. Robertson, Organ Donations by Incompetents and the Substituted Judgment Doctrine, 76 CoLu-M. L. BEv. 58 (1976) S.W.2d 145 (Ky. 1969).

19 19761 WITHHOLDING MEDICAL TREATMENT she cannot actively participate. As Professor Robertson has pointed out: If respect for persons means that we accede to a persons choice of ends and means, respect for incompetent persons requires that they be similarly treated. It must be determined what choices a competent person with the characteristics, tastes, preferences, history, and prospects of the incompetent would make to maximize his interests or wants - both those he presently has and those he is likely to have in the future. 72 But in a case such as Saikewicz, where the patient never was and never would become competent, such a determination of how a hypothetically competent person faced with Mr. Saikewicz's past experiences and future prospects would choose, becomes a most difficult and delicate process. This is compounded by the fact that most competent persons with average background and prospects would actually choose chemotherapeutic treatment despite its adverse effects. B. Proper Guardian and His or Her Role in Substituting Judgment As might be deduced from the preceding discussion, the process of substituted judgment poses at least two questions: 1) Who will perform the substitution; and 2) What values will be ascribed to the incompetent person. While the resolution of both questions requires concern with a number of due process considerations that will be discussed later, there are some important policy and procedural issues raised as well. A possibility which tends to undermine the substituted judgment process in the field of medical decision making for incompetent patients is that the court may appoint an inappropriate party to participate in that process. For example, Saikewicz raises the question of whether a court need concern itself with what type of guardian is appointed. In Saikewicz, the probate 72 J. Robertson, supra note 70, at 65.

20 66 NEW ENGLAND JOURNAL ON PRISON LAW [VoL 3:1 court responded to a petition requesting the appointment of a guardian and a guardian ad litem for the patient by the appointment of a guardian ad litem. While it may be true that in this particular case the guardian ad litem discharged his duties in a diligent and conscientious fashion, it is highly questionable whether a guardian ad litem by himself was the proper party to initiate inquiry into the factual setting upon which recommendations regarding treatment, vel non, would later be used. What the probate court apparently failed to consider was the basic distinction between a guardian and a guardian ad litem. A general guardian is a person who is charged with the care and custody of the person and estate of the ward. As such, he is traditionally selected for his ability to provide personal care for the particular ward. A guardian ad litem on the other hand, is a special guardian whose limited and specialized function is to represent the ward in litigation. 7 8 The powers of the guardian ad litem specifically do not include the authority or control over the person of the ward. 74 A guardian ad litem is appointed with an eye toward a person best suited to represent the legal interests of the ward in those particular legal issues before the court. 75 In Noe v. True, the court noted: An appointed guardian ad litem does not replace the general guardian for all purposes but is appointed as a representative of the court to act for the minor... in litigation. 76 The proper role of the guardian ad litem is to function as the legal representative of the ward after a guardian has been appointed. Thus, in cases like Saikewicz, where the incompetent has had no person as his guardian, the action of the court in appointing a guardian ad litem but failing to appoint a general guardian presumes an equivalence that does not exist. 73 Young v. Tudor, 323 Mass. 508, 83 N.E.2d 1 (1948) C.J.S., Infants, Shuck v. Shuck, 44 N.W.2d 767 (N.D. 1950). 76 Noe v. True, 507 F.2d 9 (6th Cir. 1974).

21 1976] WITHHOLDING MEDICAL TREATMENT It would appear that a general guardian rather than a guardian ad litem is the proper person to participate in the substituted judgment process. Admittedly in the Saikewicz case the court was faced with the problem that no relatives of the patient would agree to participate as guardian. But there are persons and organizations whose expertise and training in the field of mental retardation would suggest their qualification to abt as general guardian. Such persons would more likely have the understanding and insight into the problems of severely retarded patients and ought to be better equipped to evaluate the best interest of these incompetent patients. A guardian ad litem, on the other hand, who is traditionally chosen for his or her ability to represent the ward in litigation and whose duties ordinarily exclude control over the person of the ward is a less likely candidate to ascertain those best interests. When the awesome question arises regarding whether life extending treatment should be administered to an incompetent patient, the basic rights of the patient must be protected. The first obligation of the court to the patient is the careful appointment of a general guardian who will make that choice. Substantive rights can be lost in a procedure which fails to find the best person to substitute judgment. C. Determining the Source of the Incompetent Patient's Values Assuming, however, that the selection of persons best suited to suibstitute judgment is attended to with great care, there still remains the problem of distinguishing their values from those of the incompetent patient. A general guardian may have control and custody of the person of the ward. But to what extent should the guardian's values influence his or her decision regarding life extending medical treatment for the ward? It should be strongly argued that with a factual situation such as in Saikewicz, the values of the guardian deserve no part in the considerations of substituted judgment.

22 68 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 In determining the "best interest," or that which the ward should have chosen for himself, the inquiry must encompass all the considerations germane to the individual incompetent's particular situation. The frame of reference and system of values must be his or hers and not that of the guardian. 77 The guardian's task should be the ascertainment of what the patient would want. He must be able to place himself in the position of the incompetent patient for the purpose of determining that choice. He must: [M]ake him or herself aware of the way the ward's disabilities alter and affect his (the ward's) perceptions, priorities, and values. Upon accomplishing this, the decisionmaker may then take into consideration the various factors which will influence his decision. 78 Such a framework tends to minimize the danger that the guardian will simply substitute his own values or those of the family, physician or society for those of the patient. Finally, it should also be noted that the problem of "whose values" will be chosen is especially difficult in situations like that in Saikewicz where a state institution acts as the petitioner for medical treatment. For many reasons the institution may not be disposed to carefully ascertain the probable preferences of the patient. The institution may see its role only in terms of carrying out its mandate to treat regardless of the wishes of the patient or prisoner. Being charged with the care and custody of a "mentally ill" person or with "criminals," the institution may have already discounted the need to discover the inmate's values. In the realm of coerced medication it has been said that: State institutions seem to impute an automatic legal and constitutional disability to prisoners and mental patients which simply is not to be found in statutes or regulations Amicus Curiae brief of the Mental Health Legal Advisor's Committee supra note 32, Jones v. Saikewicz, - Mass. -, Civil No , (Hampshire County Probate Court, No , filed May, 1976) M. Bomstein, The Forcible Administration of Drugs to Prisoners and Mental Patients, 1975 CLEARixnHOUSE REviEw 386.

23 1976] WITHHOLDING MEDICAL TREATMENT So too could such a mentality pervade a legal procedure that attempts to substitute judgment for an obviously mentally incompetent patient. Thus a pressure which must be resisted in the difficult task of extrapolating the probable values of the incompetent patient is that of the institution which sees its role as the advocate of treatment at any cost. It is a pressure which may be born of a general attitude which has routinely substituted accepted social values for those of a patient or it may be the motivation to avoid legal liability; the reflex to retain maximum control over its patients; or a fear of adverse precedent. In any event, the process of substituted judgment should involve a determination of the individual's probable preference. In a process which requires such delicate balancing one must be mindful of the impact that the institutional pressures may have on the ultimate decision. D. Matter of Quinlan - Inadequate Procedure, Unsatisfactory Precedent The use of the concept of substituted judgment in deciding treatment vel non for the terminally ill incompetent patient has received much attention in the recent Karen Ann Quinlan case. In Quinlan, a twenty-two year old woman had suffered irreversible brain damage to the extent that all sapient brain functioning had ceased. The Quinlan court was faced with the question of whether to remove a respirator which was providing sustenance for Quinlan's vegetative existence. Having found that the right to refuse such extraordinary medical treatment was grounded in the right of privacy, the court was next faced with a most difficult dilemma: We have no doubt, in these unhappy circumstances, that if Karen were herself miraculously lucid for an interval (not altering the existing prognosis of the condition to which she would soon return) and perceptive of her irreversible condition, she could effectively decide upon discontinuance of the

24 70 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 life-support apparatus, even if it meant the prospect of natural death. 80 In order to ascertain Karen's probable preference a method incorporating the principles of substituted judgment was sanctioned. The court said: The only practical way to prevent destruction of the right (of privacy) is to permit the guardian and family of Karen to render their best judgment, subject to the qualifications hereinafter stated, as to whether she would exercise it in these circumstances. 81 It is here that we must contrast the policies and procedures opted for by the Quinlan court with what we consider to be the minimum consideration which should be given to the patients probable preferences in such cases. Simply stated the Quinlan court upheld the guardian's power to authorize withholding of treatment in conjunction with the authorization of attending physicians, the family and an ethics committee of the hospital where the individual is a patient. But does such a procedure fairly and competently safeguard the best interest (and wishes) of the patient, or does it tend to substitute the judgment of others and neglect consideration of what the patient would have wanted? Unfortunately, as we have seen, the choices of who will represent the patient in the decision-making process may also influence the source from which the values governing that decision will be drawn. We would suggest, therefore, that at least with respect to its precedential value for the Saikewicz case, the procedure adopted by the Quinlan court is insufficient for several reasons. While the Quinlan court initially expressed the belief that Karen's probable preferences should be entered into the equation, there is no indication that the ethics committee-guardian-family panel actually need make such a determination. The only necessary finding would seem to be that there is: 80 Matter of Quinlan, 70 N.J. 10, 355 A.2d 647 (1976). SlId at 41.

25 1976] WITHHOLDING MEDICAL TREATMENT [N]o reasonable possibility of Karen's ever emerging from her present comatose condition to a cognitive, sapient state...82 Upon such a finding the panel could discontinue the life support equipment. Nowhere in the opinion, however, is there any further mention of the need to determine what Karen would have wanted or the process whereby such a determination would be made. In fact, if the license to withhold treatment turns only upon a prognosis of no reasonable possibility of recovery, there seems to be little room for the principle of substituted judgment. It might be argued however, that in Quinlan the court could readily and probably accurately speculate that most people would choose withdrawal of life support where there was no chance of recovery. The obviousness of such a decision may have relegated the process by which it was to be reached to an exercise of that choice by Karen's family subject only to approval by the ethics committee. There is little supervision of the substituted judgment process here -perhaps because the court felt that the decision was a foregone conclusion contingent only upon the medical findings of fact which justified it. But other courts faced with similar problems in the area of medical treatment for incompetent patients have seen fit not to leave such a determination in the hands of family members alone. In Hart v. Brown, 8 3 a decision to transplant a kidney from a healthy minor to an ailing sibling was found to be outside of the power of the guardian and required the involvement of the court. In that case only the parent as natural guardian could derive the power to make such a substitution of judgment after, "a review by a community representation which includes a court of equity." 84 It should also be remembered that in Quinlan, the legal foundation for the termination of life sustaining measures could be 82 Id. at Conn. Super. 268, 289 A.2d 387 (1972). 84 Id.

26 72 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 derived only from Karen's right to privacy. It was this right which the court set out to uphold and which, "should not be discarded solely on the basis that her condition prevents her conscious exercise of that choice." 8 Thus, Karen's right to privacy was to be asserted on her behalf by her parents. We can only surmise the reasons for the apparent neglect of the substituted judgment aspect in the actual holding. The Quinlan court, after analyzing the proper role of the medical profession in these matters, seems to have construed that role not as one of determining the degree of possibility for a return to sapient function (a condition precedent to ascertaining what Karen would now want given this information) but as the quintessence of the decision of whether to withdraw treatment. The interplay of Karen's individual judgment somehow seems lost in such a process. Indeed, in order to insure the proper measure of what should be the most important consideration, namely the patient's preference, should not a court of equity remain closely involved in all such decisions? The abdication of such judicial supervision was justified in Quinlan on the grounds that: [A] practice of applying to a court to confirm such decisions would generally be inappropriate, not only because that would be a gratuitous encroachment upon the medical profession's field of competence, but because it would be impossibly cumbersome. s6 Absent from this, however, is the realization that even though the determination of Karen's physical state and medical prognosis was certainly a medical process, the decision of whether to withdraw treatment was still to be based on her right to privacy. It was not a decision to be made because she had no reasonable possibility of returning to normal, but rather it was a decision which could be asserted for Karen if such a condition was found to exist. Only a court through exercise of its inherent equity N.J. at Id. at 50.

27 1976] WITHHOLDING MEDICAL TREATMENT powers and through its historical use of the substituted judgment process can properly oversee all parties and properly determine whether Karen would in fact have made such a decision under the existing circumstances. The procedure sanctioned by the Quinlan court is thoroughly unsuited for utilization in a case such as S'akewicz for additional reasons as well. The probable preferences of a severely retarded lifelong inmate of a state facility are infinitely more difficult to approximate than those in Quinlan. The tendency is probably even greater to substitute not the best estimate of what the patient would want but a medical decision based only upon what "most patients" usually choose. The problem, however, is that Saikewicz was far from a typical patient. His values might well center not on the prospects of longer life, but on the continued enjoyment of a painless present. In Saikewicz there was no family present to aid in approximating these values. The process will therefore necessarily take place through input from the medical profession, a court appointed guardian and the patient's institutional "parent". Without the close supervision of a Court, the legal basis of any decision, i.e. Mr. Saikewicz's right to privacy, may quickly become forgotten. As in Quinlan, there can develop a clouding of the difference between a process which determines the present medical state and prognosis of the patient and the determination of what he would probably choose for himself in the way of treatment. It is much easier to determine what medical scientists would probably choose to do under the circumstances than it is to probe the probable values of a severely retarded adult in hopes of determining what he might want. To the extent that this is done, and a purely medical decision in favor of treatment is reached, Mr. :Saikewicz's right to privacy is lost. Even more chilling, however, is the prospect that if a purely medical decision favoring non-treatment is reached, Mr. Saikewicz;'s right to life is lost without the protection of proper judicial supervision.

28 74 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 E. Due Process RequireMe&ts 8 7 The threshold question in any due process consideration is whether or not state action is involved. The state court does the appointing of a guardian. If necessary it may remove a guardian, and it is involved in supervising and limiting the exercise of his authority. State action includes actions of state courts and state judicial officials. 88 It is clear that but for the active intervention of the state court in appointing a guardian the ward would have remained free to manage his own person and affairs. With the appointment of a guardian the individual loses his right to self control and certain other legal rights. It is evident then, that the appointing of a guardian is definitely within the ambit of state action. The controversy that is inherent in any discussion of issues regarding the right to refuse life-prolonging treatment is not difficult to understand. Any consideration of facilitating death calls into question the basic values and mores of our society. The decision of when and how to allow someone to die is made every day, governed only by the dictates of conscience and social pressure on one hand and the law of homicide and suicide on the other. 89 The decision not to treat a terminally ill incompetent patient, made without the approval of the court after a full examination of what would be in the patient's best interest, is a violation of the individual's right to due process guaranteed by the Fourteenth Amendment. There is a presumption for life, and for administering life preserving treatment to the incompetent patient. This is evidenced in the emergency medical situation in which the patient's consent to life preserving treatment is presumed, and no liabili- 87 The following section is based primarily upon the Amicus Curiae Brief of the Mental Health Legal Advisorsy Committee, supra note 32, and the arguments presented to the Supreme Judicial Court in that brief. 88 Shelley v. Kraemer, 334 U.S. 1 (1948). 89 Douglas v. Southwestern Life Ins. Co., 374 S.W. 2d 788, 793 (Tex. 1964); see also Foreman, supra note 17, at 169.

29 1976) WITHHOLDING MEDICAL TREATMENT ty arises from the bodily invasion of treatment per se, despite the absence of express consent. 0 It has been said that "[T]his principal is founded on the traditional concept of medicine's goal to preserve life. It follows that conduct contrary to the presumption of consent to treat would be a violation of the patient's right to life and thus, could be wrongful." 1 The presumption of consent is given more weight when consideration is given to the fact that many terminal (competent) patients choose to undergo treatment and prolong their lives even in the face of little or no hope of cure. 92 Furthermore, the Saikewicz record indicates that most terminally ill patients do choose treatment. If the patient were competent, case law based on the constitutional right to privacy and the right to self-determination 94 has established the patient's right to refuse extraordinary means of treatmentf 5 Furthermore, if the patient were competent, there is ample authority to indicate that his or her constitutional rights to privacy and self-determination include the right to refuse ordinary treatment."' The right to control of one's body which exists in the right to refuse ordinary medical treatment may be limited by the state upon showing a compelling state interest for requiring that the individual receive the unwanted treatment. 7 However, a determination by a guardian which would deny an individual the right to treatment and, thus, the right to life, is violative of the Fourteenth Amendment. In both the Saikewicz 90 Gravis v. Physicians and Surgeons Hospital, 415 S.W. 2d 674, rev 'd. on other grouds, 427 S.W.2d 310 (Tex. 1967). 91 Amicus Curiae Brief, supra note 32, at 11. T.H. Sharp Jr., supra note 36, at Boughman, Bruha and Gould, supra note 4, at Griswold v. Conn., 381 U.S. 479 (1972) ; Roe v. Wade, 410 U.S. 113 (1973). 94 Nathanson v. Kline, 250 P.2d 1093, rehearing den., 354 P.2d 670 (Kan. 1960). 95 Schoendoreff v. Society of New York Hospitals, 105 N.E. 92, 93 (N.Y., 1914). 06 Erickson v. Dilgard, 44 Misc. 2d 27, 252 N.Y.S. 2d 705 (1962). 97 Application of President and Director of Georgetown College, Inc., 118 U.S. App. D.C. 80, 331 F.2d 1000, rehearing den., 118 U.S. App. D.C. 90, 331 F.2d 1010, cert. den., 337 U.S. 978 (1964).

30 76 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 and the Quinlan cases there was sound medical advice and concerned persons advising the decision. There were, nonetheless, insufficient legal safeguards upon the decision-makers to insure that the best interest of the patient was, in fact, to forego treatment and probably hasten death. A determination that the best interest of the patient is refusal of treatment requires a balancing of the individual's constitutional right to privacy and self-determination with his or her right to life. Constitutional issues and personal legal rights are within the exclusive province and authority of the court to determine. 98 The Fourteenth Amendment articulates the right to life and safeguards it against taking by the state without due process of law. This safeguard protects the individual from more than affirmative legislative or judicially originating assault upon the sanctity of human existence. In Vanderbilt v. Hageman, 9 the court stated: [T]he right to life... included more than mere freedom from personal harm... by direct operation of enactment of the legislature. A person may be deprived of life... by the removal of those safeguards which restrain one individual from violating the personal rights of others. 0 0 One of the most glaring violations of due process rights occurs when the life of an incompetent patient is prematurely terminated because treatment was denied. 101 The terminally ill patient may wish to forego the offered treatment for a number of reasons: religious beliefs, pain and suffering, or exhaustion of financial resources. The patient's wish may conflict with the interests of the health care providers who are committed to the prolongation of life through medical technology or with what 98 S. Stewart, supra note 68, at N.Y.S. 586 (1935). 100 Ia. at o Boughman, Bruha and Gould, supra note 4, at 1230.

31 1976] WITHHOLDING MEDICAL TREATMENT seems to be the interests of the state, asserted through laws against suicide and homicide. 0 2 However, some terminal patients choose to live in the face of little or no hope of cure. Whether because of religious belief, hope for a miraculous recovery, or fear of death, it is not uncommon for the terminally ill patient to choose treatment and prolonged life. Also, unconsciousness, mental derangement brought on by extreme pain or drugs, mental illness or mental retardation render some patients incapable of intelligently choosing to have their existence terminated. Those closely involved with the patient, such as a relative or physician may favor nontreatment and an early death, but perhaps only for reasons personal to them and not relevant to the life of the disabled person. Their motives may be commendable, such as preventing needless pain. Or their motives may not be so laudable, such as hastening an inheritance. Therefore, as the patient's life may be terminated without his or her consent or awareness, and since there are no legal safeguards to insure that it is the wish of the patient and in his best interest to die, the unwilling or unconsenting patient has no safeguard for his existence Where the patient cannot participate in the process of deciding whether or not to withhold treatment, the decision is most often made by the attending physician and family. Looking first to the viewpoint of the physician, a problem with the law as it now stands is that it offers no assurance that later liability in civil or criminal actions will not result from failure to treat Even without the element of legal liability of the physician another problem exists. A doctor is constantly involved in life or death decisions. While the burden or responsibility which these decisions create is no doubt very great, the decision of whether to recommend that a patient not be treated and allowed to die must be far greater. Indeed, the very manner in 1o2 Montange, supra note 2, at o3 Boughman, Bruha and Gould, supra note 4, at S. Stewart, supra note 68, at 171.

32 78 NEW ENGLAND JOURNAL ON PRISON LAW [VoL 3:1 which the alternatives of treatment are presented to a family or patient can have a great deal to do with what decision regarding treatment will be made. Thus, another argument for the case that society should formally come to grips with the problem of prolonged dying is that men and women should not be saddled with the decision-making burden merely by virtue of their profession as doctors. Society must provide assistance beyond the instilling of moral standards with regard to the value of human life. 105 The use of an ethics committee in deciding who should be allowed to die is an alternative already being employed in some hospitals. Such a committee was considered an appropriate authority to share the decision-making process in deciding whether or not to treat by the New Jersey court in Matter of Quinlan. While such a committee can serve to partially relieve a physician's responsibility, it cannot resolve the ultimate dilemmas which are present. The problems of legal liability and moral responsibility continue to exist. Those who attend to the medical needs of the dying are probably not as closely touched by the crisis of prolonged death as the family of the patient. Usually family members are concerned with the well-being of the patient and their participation in the decision-making process provides some safeguards to the full representation of the patient's interest. However, the possibility exists that one's family, or some members thereof, will not have the patient's best interest at heart, because, for example, of personal ill will or individual stakes in an inheritance. Therefore, more safeguards than just family relationship must be built into the system, although the family is one segment which must be actively involved in the decision. Each group- the physicians, the ethics committee and the family - has some drawback in making the decision of whether or not treatment should be discontinued and a patient allowed to 1o514.

33 1976] WITHHOLDING MEDICAL TREATMENT die who cannot make that decision for himself. Their participation with the court is, however, encouraged. The awesome responsibility should be shared, while the court must remain the final arbiter. F. Policy Reasons for Court Involvement Several additional reasons have been advanced for the proper involvement of the courts in such medical decisions. In one article 0 " the authors state five of these policy considerations. In the interests of fully developing what we think is the proper policy background for an adequate procedure in the Saikewicz case, we would like to restate those policies as they relate to the facts in Saikewicz. First, "Society already looks to the courts as the arbitrators of questions of fact, even those with great moral ramifications." ' 0 7 The question of what Joseph Saikewicz would have wanted if he could have communicated his desires is necessarily a question of fact. While the court must rely on expert medical opinion on such technical questions as his medical prognosis, the fact finding process as it concerns the incompetent patient has historically been a court function. As in considering the testamentary intent and values of a decedent, a court of law should not delegate such a delicate fact finding process to lay persons. Second, "[P]rotecting the rights of individuals is a prime directive in our courts. Specifically, American courts are well versed in the nuances of our Constitutional standards of due process as it applies to the right to life." 0 8 The Quinlan court felt justified in leaving the decision process in the hands of a medical-ethics committee-family panel. The basis for this delegation was rooted as much in their belief that they would be encroaching upon the field of medical competence as it was in the practical limitations on the ability of the courts to handle 108 Id. at Id. at Id. at 173.

34 80 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 the burdens of such a cumbersome procedure. But the judiciary must not point to the slowness of the legal system to justify such abdication of responsibility. The safeguards provided by the courts can perhaps be assured with some type of administrative procedure in which the delay incurred in the traditional legal process could be avoided. 109 Third, "The courts would provide a forum in which all previously discussed groups could coordinate their input of information and concern." 110 In the Saikewicz situation a policy of carefully balancing, insuring and encouraging the input of all concerned groups must be extended. The courts have always provided such a forum whereby interested parties can provide input such as through amicus briefs. Absent such a forum, interested and informed participants such as the Massachusetts Association for Retarded Citizens might not be heard. A panel of ethical, medical and family members alone have no legal duty to concern themselves with the input of outsiders. In addition, the court forum is a fair forum in which all members of any panel have equal access to the balancing process. To what extent, for instance, can the overreaching of one member of the Quinlan-like panel induce the acquiescence of the others? We have already pointed out the possible disparity between the institution's concerns and the rights of the patient in such cases as Saikewicz. It would seem that only a court can provide the proper environment for insuring that the values of the patient remain the focal point in determining whether the right to privacy or the right to life shall prevail. Fourth, "The courts could provide the ultimate safeguard against those who might not have the patient's best interest at heart." " In Saikewicz, the absence of family concern over the final disposition of the treatment issue masks the dangers often 109 Id. at Id. at T Id.

35 1976] WITHHOLDING MEDICAL TREATMENT present in such situations. Even disregarding such obvious examples as those family members who in some situations merely seek to hasten an inheritance, there still exist even more subtle forms of adverse influence. Those closely involved with the patient, such as a relative or physician may favor non-treatment and an early death, but perhaps only for reasons personal to them and not relevant to life of the disabled person. 12 And indeed, the extent to which the decision to opt for treatment may advance institutional norms or avoid legal liability where immunity is not provided by the court (e.g. Quinlan) becomes a concern in this regard. The court, however, will be quick to ferret out the irrelevant desires and motivations of those who participate or influence a decision-making panel. Finally, "The courts could provide the focal point for society's participation in this most crucial decision. Through the courts, society could share in the legal and moral responsibility of this decision which bears so heavily on individuals." ' I There is a definite attractiveness to a process by which all members of society, through its courts, can participate. The alternative would seem to be the development of an autonomous, elitist panel of medical and ethical experts upon whose shoulders alone the decision to treat would rest. From purely a policy point of view, there are individual rights at stake which are too important to be ultimately left to extra-judicial decision-makers. And since each of us is a potential victim in such a medical-legal dilemma, each of us should be involved at least through the public administration of judicial process. VI. CONCLUSION The right to privacy of the incompetent patient is no less than the right to privacy constitutionally accorded all persons. It goes without saying that the incompetent patient's right to life 11 Amicus Cariae Brief of Mental Health Legal Advisors, supra note 32, at S. Stewart, supra note 68, at 173.

36 82 NEW ENGLAND JOURNAL ON PRISON LAW [Vol. 3:1 deserves at least the same protection that the law affords competent people. When the question of whether or not life extending treatment should be administered to a person who is incapable of deciding, society should require more, not less, due process protection. For this as well as the policy considerations previously discussed, we have said that the procedures adopted by the Quinlan court are inadequate and especially unsuited for utilization in a case such as Saikewicz. Any procedure which seeks to arrive at a medical decision regarding life extending treatment for an incompetent patient must embrace certain minimum safeguards. The patient must be protected by the appointment of a general guardian who is chosen as the person best able to carry out his special role in the decision-making process. When the recommendation of the guardian infringes upon the fundamental constitutional rights of the incompetent patient, a guardian ad litem should be appointed to take a position contrary to that of the general guardian. This assures that the benefits of our adversarial system will accrue not only to the patient, but also to the involved physicians and hospital, in that their freedom from legal liability arising from failure to treat, can be clearly established. Finally, due process requires that a court must remain involved in the ultimate decision to extend or withhold the life extending treatment. Such involvement should take place within the familiar arena of a court hearing. We recognize that such a procedure could be a burdensome and impractical imposition upon the courts if applied to every minor decision made by a guardian which was ostensibly contrary to the medical best interests of the patient. However, where non-treatment of a terminally ill incompetent patient will hasten his or her death, the constitutional requirements of due process mandate close court involvement in such a decision. Delegation of that court function to those outside the judicial process seriously compromises the constitutional rights of the patient. As more and more people fall victim to this dilemma of modern science, there will be an increased outcry for proper