Hostname: page-component-cd9895bd7-8ctnn Total loading time: 0 Render date: 2024-12-26T05:48:53.068Z Has data issue: false hasContentIssue false
  • English
  • Français

Foregoing Life-Sustaining Treatment for Adult, Developmentally Disabled, Public Wards: A Proposed Statute

Published online by Cambridge University Press:  24 February 2021

Deborah K. McKnight  and
Maureen Bellis
Deborah K. McKnight
Affiliation:
Northwestern University Law School; Grinnell College
Maureen Bellis
Affiliation:
University of Minnesota Law School; College of New Rochelle
Get access Rights & Permissions [Opens in a new window]

Abstract

This Article proposes a procedure for making decisions to forego life-sustaining treatment for adult, developmentally disabled, public wards who are not competent to make health care decisions. Few commentators or cases address the special considerations involved in making life-sustaining treatment decisions for this patient population. The proposal attempts to fill this gap with a patient-centered process that allows decisionmakers, without prior judicial approval, to forego lifesustaining treatment for adult, developmentally disabled, public wards who have been reliably diagnosed with specific medical conditions.

Type
Articles
Information
American Journal of Law & Medicine , Volume 18 , Issue 3 , 1992 , pp. 203 - 232
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1992

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1 See, e.g., COORDINATING COUNCIL ON LIFE-SUSTAINING MEDICAL TREATMENT DECISION MAKING BY THE COURTS, NATIONAL CENTER FOR STATE COURTS, GUIDELINES FOR STATE COURT DECISION MAKING IN AUTHORIZING OR WITHHOLDING LIFE-SUSTAINING MEDICAL TREATMENT 24 (1991) [hereinafter STATE COURT GUIDELINES].

2 See In re Grant, 747 P.2d 445 (1987) (en banc), modified 757 P.2d 534 (Wash. 1988) (describing procedure for foregoing life-sustaining treatment for developmentally disabled minor substantially similar to the one suggested here).

3 42 U.S.C. § 6001(5) (Supp. 1992).

4 THE HASTINGS CENTER, GUIDELINES ON THE TERMINATION OF LIFE-SUSTAINING TREATMENT AND THE CARE OF THE DYING 7 n.* (1987) [hereinafter HASTINGS CENTER GUIDELINES].

5 Commission on the Mentally Disabled & Commission on Legal Problems of the Elderly, Guardianship: An Agenda for Reform, 13 MENTAL & PHYSICAL DISABILITY REP. 271, 274 (May-June, 1989).Google Scholar

6 Id.

7 See DANIEL CALLAHAN, SETTING LIMITS 227 (1987).

8 See Tamar Lewin, As the Retarded Live Longer, Anxiety Grips Aging Patients, N.Y. TIMES, Oct. 28, 1990, sec. 1, at 1 (noting that lifespan for persons with Down's syndrome has increased from 12 years in the 1940s to over 50 at present).

9 See SALLY BALCH HURME, STEPS TO ENHANCE GUARDIANSHIP MONITORING, Chart IV (1991).

10 Lewin, supra note 8 (citing study of 450 families that found siblings would care for retarded adults when parents no longer can in 60 percent of cases).

11 See, e.g., GA. CODE ANN. § 29-5-1 (1991); MINN. STAT., ch. 252A (1991).

12 See, e.g., MINN. STAT. § 252A.01 (1991). The advent of the Medical Assistance program in 1965 (42 U.S.C.A. § 1396) (West 1983 and 1991 Supp.) and the Supplemental Security Income program in 1972 (42 U.S.C.A. §§ 1381-1383) (West 1983 and 1991 Supp.), released federal funds for medical care and income assistance to developmentally disabled clients, which mooted the financial rationale for relying on a public guardianship.

13 See, e.g., STATE COURT GUIDELINES, supra note 1, at app. D.

14 See, e.g., MARY C. HOWELL ET AL., SERVING THE UNDERSERVED: CARING FOR PEOPLE WHO ARE BOTH OLD AND MENTALLY RETARDED (1989); Krais, William A., The Incompetent Developmentally Disabled Person's Right of Self-Determination: Right-to-Die, Sterilization and Institutionalization, 15 AM. J.L. & MED. 333 (1989).Google Scholar

For discussion of the developmentally disabled as well as the previously competent, see NORMAN L. CANTOR, LEGAL FRONTIERS OF DEATH AND DYING 91-96 (1987). See also PRESIDENT's COMMISSION FOR THE STUDY OF ETHICAL PROBLEMS IN BIOMEDICAL AND BEHAVIORAL RESEARCH, DECIDING TO FOREGO LIFE-SUSTAINING TREATMENT 123 (1983) [hereinafter PRESIDENT's COMMISSION REPORT]; Veatch, Robert M., Limits of Guardian Treatment Refusal: A Reasonableness Standard, 9 AM. J.L. & MED. 427 (1984)Google Scholar; Rhoden, Nancy K., Litigating Life and Death, 102 HARV. L. REV. 375 (1988).CrossRefGoogle Scholar

15 New York law mandates a procedure for entering “do not resuscitate” orders (DNR orders) for developmentally disabled patients. See N.Y. PUB. HEALTH LAW Art. 29-B §§ 2960-78. This law does not apply to orders to withhold other forms of life-sustaining treatment. Id.

California authorizes a public guardian to petition the court for authority to consent to medical treatment. CAL PROB. CODE § 3200 et seq. The statute does not explicitly extend this authority to the withholding of life-sustaining treatment from public wards.

16 See Superintendent of Belchertown v. Saikewicz, 370 N.E.2d 417, 432-34 (Mass. 1977) (state ward); In re Moorhouse, 593 A.2d 1256, 1258-60 (N.J. 1991); In re Grant, 747 P.2d at 456; In re Hamlin, 689 P.2d 1372, 1378 (Wash. 1984) (en banc).

In New York, life-sustaining treatment of a terminally ill, developmentally disabled patient cannot be foregone. In re Storar, 420 N.E.2d 64, 72-73 (N.Y.), cert, denied, 454 U.S. 858 (1981).

17 See Bradley, Gerald V., Does Autonomy Require Informed and Specific Refusal of Life-Sustaining Medical Treatment?, 5 ISSUES L. & MED. 301, 305 (1989)Google Scholar; Dresser, Rebecca, Life, Death and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law, 28 ARIZ. L. REV. 373, 384 (1986).Google Scholar

18 HASTINGS CENTER GUIDELINES, supra note 4, at 4; see also THE COUNCIL ON ETHICAL & JUDICIAL AFFAIRS, AM. MED. ASS'N., CURRENT OPINIONS 2.20 (1989) [hereinafter AMERICAN MEDICAL ASSOCIATION OPINIONS]; PRESIDENT's COMMISSION REPORT, supra note 14, at 3.

19 The medical profession generally equates artificial nutrition and hydration with other forms of medical treatment. See Executive Board, American Academy of Neurology, Position of the American Academy of Neurology on Certain Aspects of the Care and Management of the Persistent Vegetative State Patient, 39 NEUROLOGY 125, 125-26 (1989)CrossRefGoogle Scholar [hereinafter AMERICAN NEUROLOGY GUIDELINES]. But see Barry, Fr. Robert, Facing Hard Cases: The Ethics of Assisted Feeding, 2 ISSUES L. & MED. 99, 100 (1986).Google Scholar The majority case rule follows the medical profession in treating artificial sustenance the same as other medical interventions. See In re Gardner, 534 A.2d 947, 954 (Me. 1987) (listing cases following majority view).

Some living will statutes prohibit withholding nutrition and hydration. Lobe, Shari, The Will to Die: Survey of State Living Will Legislation and Case Law, 9 PROB. L.J. 47, 65 n.103 (1989).Google Scholar

20 E.g., In re Conroy, 486 A.2d 1209, 1234 (N.J. 1985); In re Grant, 747 P.2d at 452.

21 See CANTOR, supra note 14, at 32-35. See also PRESIDENT's COMMISSION REPORT, supra note 14, at 73-77.

22 Some health care commentators believe that withholding treatment is morally permissible, whereas withdrawing it is wrong. HASTINGS CENTER GUIDELINES, supra note 4, at 5-6. One court characterized this distinction as “more psychologically compelling than logically sound.” In re Conroy, 486 A.2d at 1234. Nevertheless, the ability to withdraw treatment enables caregivers and decisionmakers to try new therapies and discard those not useful to the patient. HASTINGS CENTER GUIDELINES, supra note 4, at 130. See also George Annas, Do Feeding Tubes Have More Rights Than Patients?, HASTINGS CENTER REP., Feb. 1986, at 27.

23 The persistent vegetative state is a form of permanent unconsciousness that current medical and legal sources treat as a terminal illness. See PRESIDENT's COMMISSION REPORT, supra note 14, at 176-81, 459-60. Bui see In re Quinlan, 355 A.2d 647 (N.J.), cert, denied, 429 U.S. 922 (1976) (patient in a persistent vegetative state was not a terminal patient); Hafemeister, Thomas L., Guidelines for State Court Decision Making In Life-Sustaining Medical Treatment Cases, 7 ISSUES L. & MED. 443, 445 (1992).Google Scholar

24 STATE COURT GUIDELINES, supra note 1, at app. C.

25 HASTINGS CENTER GUIDELINES, supra note 4, at iii.

26 STATE COURT GUIDELINES, supra note 1, at 119. Critics maintain that the use of the word “terminal” overemphasizes proximity of death in evaluating the advisability of life-sustaining treatment. Id. at 119 n.184. To address that concern, the proposal adopts the one-year time period recommended in the Hastings Center Guidelines. HASTINGS CENTER GUIDELINES, supra note 4, at 141.

27 For example, some courts have held that artificial nutrition in the form of a gastrostomy tube could not be withheld from persons with severe forms of cerebral palsy because cerebral palsy is not a terminal illness. See Bouvia v. Riverside General Hospital, No. 159780 (Cal. Dec. 19, 1983). But see Bouvia v. Superior Court, 225 Cal. Rptr. 297, 302 (Cal. Ct. App. 1986).

28 Cruzan v. Director, Missouri Dept. of Health, 110 S.Ct. 2841, 2851 (1990).

29 Id. at 2852.

30 See Young v. Oakland Gen. Hosp., 437 N.W. 2d 321, 324 (Mich. 1989); Schloendorff v. Society of N.Y. Hosp., 105 N.E. 92, 93 (N.Y. 1914); Estate of Leach v. Shapiro, 469 N.E.2d 1047, 1052 (Ohio 1984).

31 See Areen, Judith, The Legal Status of Consent Obtained from Families of Adult Patients to Withhold or Withdraw Treatment, 258 JAMA 229 (1987).CrossRefGoogle ScholarPubMed

32 See Cohen, Todd J. et al., Active Compression-Decompression: A New Method of Cardiopulmonary Resuscitation, 267 JAMA 2916(8) (1992)CrossRefGoogle Scholar; Cranford, Ronald, The Persistent Vegetative State: The Medical Reality (Getting the Facts Straight), 18 HASTINGS CENTER REP. 27, 30-31 (Feb./Mar. 1988).CrossRefGoogle ScholarPubMed

33 In 1949, half of all deaths in the United States occurred in health care facilities. By 1983, this proportion had risen to 80%. PRESIDENT's COMMISSION REPORT, supra note 14, at 17-18. Approximately 70% of hospital deaths involve a decision to forego life-sustaining treatment. Cruzan, 110 S.Ct. at 2864 (Brennan.J., dissenting).

34 See, e.g., Cruzan, 110 S.Ct. at 2859 (Scalia, J., concurring) (noting “the constantly increasing power of science to keep the human body alive for longer than any reasonable person would want to inhabit it”).

35 For example, on average, 10 life support systems are disconnected weekly in Minnesota, without judicial authorization. In re Torres, 357 N.W.2d 332, 341 n.4 (Minn. 1984).

36 Weir, Robert & Gostin, Larry, Decisions to Abate Life-Sustaining Treatment for Nonautonomous Patients, 264 JAMA 1846, 1846 (1990).CrossRefGoogle Scholar

37 See STATE COURT GUIDELINES, supra note 1, at app. A (“State and Federal Cases Addressing the Initiation, Maintenance, or Removal of Life-Sustaining Treatment 1976-1991”).

38 Schloendorff v. Society of N.Y. Hosp., 105 N.E. at 93 (Cardozo.J.) (“Every human being of adult years and sound mind has a right to determine what shall be done with his own body … . ”).

39 See, e.g., Mitchell ex rel. Rasmussen v. Fleming, 741 P.2d 674, 683 (Ariz. 1987) (en banc); In re Estate of Longeway, 549 N.E.2d 292, 297 (Ill. 1989); In re Gardner, 534 A.2d 947, 951 (Me. 1987); In re Storar, 420 N.E.2d at 71; In re Colyer, 660 P.2d 738, 743 (Wash. 1983) (en banc).

40 In re Quinlan, 355 A.2d 647, 663 (N.J.), cert, denied sub. nom. Garger v. New Jersey, 429 U.S. 922 (1976).

41 E.g., Mitchell ex. rel. Rasmussen v. Fleming, 741 P.2d at 682; In re Grant, 747 P.2d at 449 n.1.

42 See In re Gardner, 534 A.2d at 952; In re Quinlan, 355 A.2d at 664; In re Colyer, 660 P.2d at 744.

43 See Saikewicz, 370 N.E.2d at 427 (retarded resident of state school); In re Hamlin, 689 P.2d at 1374 (severely retarded man); see also In re Lawrence, 579 N.E.2d 32 (Ind. 1991) (woman suffering brain damage since minority); In re Grant, 747 P.2d at 449 (minor with degenerative neurological disease that destroys cognitive functions); In re L.W., 482 N.W.2d 60, 62 (Wis. 1992) (never-competent schizophrenic).

44 Saikewicz, 370 N.E.2d at 427.

45 See, e.g.. In re Hamlin, 689 P.2d at 1377-78; In re Browning, 543 So. 2d 258, 267 (Fla. Ct. App. 1989).

46 See In re Storar, 420 N.E.2d at 72; see also Cruzan ex rel. Cruzan v. Harmon, 760 S.W.2d 408, 424 (Mo. 1988) (en banc) (holding patient's informal statement that she would not want to exist in a vegetative state without hope for improvement does not amount to clear and convincing evidence that, if competent, she would forego life-sustaining treatment).

47 See In re Storar, 420 N.E.2d 64.

48 See In re O'Connor, 531 N.E.2d 607 (N.Y. 1988).

49 E.g., Rasmussen, 741 P.2d 674; Severns v. Wilmington Medical Center, Inc., 421 A.2d 1334 (Del. 1980); In re Estate of Longeway, 549 N.E.2d 292; In re Spring, 405 N.E.2d 115 (Mass. 1980); Saikewicz, 370 N.E.2d 417 (patient never competent); In re Jobes, 529 A.2d 434 (N.J.), reconsid. den. 531 A.2d 1360, stay den. by Lincoln Park Nursing and Convalescent Home v. Kahn, 483 U.S. 1036 (1987); Gray ex rel. Gray v. Romeo, 697 F. Supp. 580 (D.R.I. 1988); In re Colyer, 660 P.2d 738.

50 Saikewicz, 370 N.E.2d at 431.

51 Some courts have upheld surrogates’ treatment decisions under a substituted judgment standard where those decisions were based in part on a general knowledge of a patient's values and lifestyle. See e.g., Rasmussen, 741 P.2d at 688 n.21; John F. Kennedy Hosp. v. Bludworth, 452 So. 2d at 926.

52 Saikewicz, 370 N.E.2d 417; In re Hier, 464 N.E.2d 959 (Mass. App. Ct.), appeal denied, 465 N.E.2d 261 (1984).

53 In re Ingram, 689 P.2d 1363, 1369-70 (Wash. 1984).

54 Rasmussen, 741 P.2d 674; In re Drabick, 245 Cal. Rptr. 840 (Cal. Ct. App. 1988), cert, denied, 488 U.S. 958, reh'g denied, 488 U.S. 1024 (1988); In re Conroy, 486 A.2d 1209.

55 PRESIDENT's COMMISSION REPORT, supra note 14, at 132-36.

56 Id. at 134-35.

57 Id.. at 135.

58 Id. at 135 n.43 (defining quality of life as “the value of the patient's life for the patient”).

59 Id. at 135. See In re Grant, 747 P.2d at 457 (quoting In re Conroy, 486 A.2d at 1249).

60 E.g., Estate of Leach v. Shapiro, 469 N.E.2d 1047, 1052-53 (Ohio 1984).

61 In re Torres, 357 N.W.2d 332 (Minn. 1984).

62 E.g., In re Jobes, 529 A.2d 434.

63 E.g., Barber v. Superior Court, 195 Cal. Rptr. 484 (1983); John F. Kennedy Hosp. v. Bludworth, 452 So. 2d 921.

64 Saikeuiicz, 370 N.E.2d at 433; see also In re Spring, 405 N.E.2d at 120-21 (requiring prior judicial authorization only for developmentally disabled patients in state custody).

65 In re Lawrence, 579 N.E.2d at 44; In re Grant, 747 P.2d at 456.

66 In re L.W., 482 N.W.2d at 62.

67 Although state laws that pertain to end-of-life treatment decisions for the developmentally disabled may raise due process concerns, they will not present equal protection problems under the Equal Protection Clause of the Fourteenth Amendment. See LAURENCE H. TRIBE, AMERICAN CONSTITUTIONAL LAW § 16-7 at 1454 (2d ed. 1988). Mentally retarded persons are not a suspect class for equal protection purposes. City of Cleburne v. Cleburne Living Center, 473 U.S. 432, 441-42 (1985). Furthermore, decisions about the continuation or termination of life will not pose equal protection challenges under a fundamental rights theory. See TRIBE, supra, at 1454 n.6.

68 A number of federal court decisions in the 1960s and 1970s began to lay the basis for a constitutional right to treatment for persons institutionalized for mental disabilities. See Welsch v. Likins, 373 F. Supp. 487 (D. Minn. 1974), aff'd., 525 F.2d 987 (8th Cir. 1975); Wyatt v. Stickney, 325 F. Supp. 781 (M.D. Ala. 1971), aff'd. sub. nom. Wyatt v. Aderholt, 503 F.2d 1305 (5th Cir. 1974); Rouse v. Cameron, 373 F.2d 451 (D.C. Cir. 1966).

The Supreme Court has not recognized a per se constitutional right to treatment for the developmentally disabled, however, beyond the right to safe conditions of confinement, freedom from unreasonable bodily restraint, and the right to training and rehabilitation. See Youngberg v. Romeo, 457 U.S. 307, 322-23 (1982) (holding that a determination of the appropriateness of an institution's treatment should be based on whether the staff exercised acceptable professional judgment).

69 110 S.Ct. 2841 (1990).

70 See Mills v. Rogers, 457 U.S. 291 (1982). The Supreme Court accepted the proposition that, under the Due Process Clause of the Fourteenth Amendment, a person has a liberty interest in avoiding unwanted medication, though only state law could determine the full extent of a patient's rights. Id. at 299-300. In response to certified questions, the Massachusetts Supreme Judicial Court determined that competent patients have a right to refuse treatment, except in emergencies, and required a court hearing to make treatment decisions for incompetent patients. Rogers v. Commissioner of the Department of Mental Health, 458 N.E.2d 308, 320-22 (Mass. 1983).

71 See Rennie v. Klein, 458 U.S. 1119 (1982), remanded, 720 F.2d 266, 270 (1983); Youngberg v. Romeo, 457 U.S. 307, 321 (1982).

72 See Washington v. Harper, 494 U.S. 210 (1990) (upholding the state of Washington's administrative procedures for overriding a mentally ill prisoner's refusal of antipsychotic medication).

73 The proposal adheres to these constitutional standards. First, the proposal assumes that developmentally disabled state wards have treatment refusal rights. Second, it provides specific standards under state law for making decisions to forego life-sustaining treatment that are more explicit than those articulated in federal case law. Third, it relies on administrative proceedings and the professional judgment of treating physicians in making treatment decisions.

74 See Destro, Robert A., Quality-of-Life, Ethics, and Constitutional Jurisprudence: The Demise of Natural Rights and Equal Protection for the Disabled and Incompetent, 2 J. CONTEMP. HEALTH L. & POL'V 71, 126 (1986)Google Scholar; Brief of the Association for Retarded Citizens of the United States and the Ethics and Advocacy Task Force of the Nursing Home Action Group as Amici Curiae at 23, 25, 28, Cruzan ex rel. Cruzan v. Harmon, 760 S.W.2d 408 (Mo. 1988), aff'd 110 S.Ct. 2841 (1990) (No. 70813) [hereinafter ARC Amicus Brief].

75 One court has held that life-sustaining treatment cannot be foregone on the patient's behalf when that patient is unable to develop treatment preferences. In re Storar, 420 N.E.2d 64.

76 PRESIDENT's COMMISSION REPORT, supra note 14, at 132-33.

77 See Bradley, supra note 17, at 301; Rhoden, supra note 14, at 387-88.

78 For example, human dignity may not have the same meaning for developmentally disabled patients as it does for other patients. See CANTOR, supra note 14, at 91.

79 Cf. id. at 72-73.

80 E.g., Beschle, Donald L., Autonomous Decisionmaking and Social Choice: Examining the “Right to Die”, 77 KY. L.J. 319, 360 (1989).Google Scholar

81 See Rhoden, Nancy K., How Should We View the Incompetent?, 17 LAW MED. & HEALTH CARE 264, 267 (1989).CrossRefGoogle Scholar

82 Rhoden, supra note 14, at 445.

83 In re Drabick, 245 Cal. Rptr. 840, 852 (Cal. App. 6 Dist. 1988) (authorizing previously competent patient's conservator to decide, based on medical advice and conservatee's best interests, to withdraw artificial life support without judicial approval).

84 See Peters, Philip J., The State's Interest in the Preservation of Life: From Quinlan to Cruzan, 50 OHIO ST. LJ. 891, 943 (1989).Google ScholarPubMed

85 See Rhoden, supra note 14, at 445; Weinberg, Joanne K., Whose Right Is It Anyway? Individualism, Community, and the Right to Die: A Commentary on the New Jersey Experience, 40 HASTINGS L.J. 119, 152-53 (1988).Google Scholar

86 Mary C. Howell, Medical Orders for the Dying Patient: Do Not Attempt Resuscitation, Limits of Treatment, and Recommendation to Remain in Residence, in SERVING THE UNDERSERVED, supra note 14, at 369.

87 Kenney, Stephen C., Death and Life Decisions: Who Is in Control?, 23 LOY. L.A. L. REV. 791, 815 (1990).Google Scholar

88 See Roach, Cathleen A., Paradox and Pandora's Box: The Tragedy of Current Right-to-Die Jurisprudence, 25 MICH. J. L. REFORM 133, 161 (1991)Google Scholar; Lobe, supra note 19, at 227.

89 Roach, supra note 88, at 172.

90 See, e.g., Americans with Disabilities Act, 42 U.S.C.A. §§ 12101-12213 (West Supp. 1991); Medical Assistance Act, 42 U.S.C.A. § 1396a (West 1985 & Supp. 1991); Rehabilitation Act of 1973, Section 504, 29 U.S.C.A. § 794 (West 1985 & Supp. 1991); The Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C.A. §§ 6000-6083 (West 1983 & Supp. 1991).

91 See Roach, supra note 88, at 173; Areen, supra note 31, at 231. See also Lobe, supra note 19, at 66. One such statute has been applied to a developmentally disabled adult who was not a public ward. See In re Lawrence, 579 N.E.2d 32.

92 See HURME, supra note 9, at Chart IV.

93 Id. Some states authorize guardian participation in end-of-life treatment decisions. E.g., N.C. GEN. STAT. § 90-322(b) (1990); TEX. HEALTH & SAFETY CODE ANN. § 672.003 (Vernon 1991).

94 Parry, John W. & Hurme, Sally Balch, Guardianship Monitoring and Enforcement Nationwide, 15 MENTAL & PHYSICAL DISABILITY L. REP. 304, 306 (1991).Google Scholar See, e.g., ARIZ. REV. STAT. ANN. § 36-564 (1986); CAL. PROB. CODE §§ 2900-2944 (West 1992); HAW. REV. STAT. § 551-2 (1985); MINN. STAT. § 525.539-.6198 (1990).

95 HURME, supra note 9, at Chart IV.

96 TONY APOLLONI & THOMAS P. COOKE, A NEW LOOK AT GUARDIANSHIP 150-52 (1984).

97 See, e.g., KAN. STAT. ANN. § 59-3006 (1990); NEB. REV. STAT. § 30-2627 (1989); N.C. GEN. STAT. §§ 35A-1270—1273 (1987); N.D. CENT. CODE § 30.1-28-1 l(3g) (1991); S.D. CODIFIED LAWS ANN. § 30-27-13 (1984); W. VA. CODE § 44-10A-6 (1982); Wis. STAT. ANN. § 880.35 (West 1991).

98 But see ILL. ANN. STAT. ch. 110.5, §§ 851(l)-(55) (1992).

99 N.Y. PUB. HEALTH LAW §§ 2960-2978 (McKinney Supp. 1992).

100 CAL. PROB. CODE §§ 3200-3211 (West 1991). The authority to consent to treatment does not explicitly include the authority to withhold treatment. Id. at § 3208. Cf. ALASKA STAT. § 13.26.150(e)(3) (1985) (prohibiting the guardian from consenting to the withholding of lifesustaining treatment).

101 Forty-nine states responded to a 1990-91 telephone survey of state agencies responsible for programs and services for developmentally disabled persons. This survey sought to ascertain state decisionmaking practices for terminally ill, developmentally disabled persons. Minn. House Research Dep't, Mentally Retarded or Developmentally Disabled Wards Under State Guardianship, 1990-91 (results on file with authors). In many states, decisionmakers generally obtain a court order before providing medical care for or withholding life-sustaining treatment from these patients. Id. See Howell, supra note 14, at 365 (describing practice at Fernhold School in Massachusetts); COUNCIL OF STATE GOVERNMENTS, SURROGATE DECISION MAKING FOR THE MENTALLY INCAPACITATED: THE NEW YORK APPROACH 2 (1991). In some states, the public guardian seeks a court order before withholding or discontinuing treatment. Minn. House Research Dep't, supra. Similarly, in states without formal public guardianship programs, decisionmakers often seek a court order before foregoing life-sustaining treatment for developmentally disabled clients. Id.

102 See In re Grant, 747 P.2d at 456; In re Hamlin, 689 P.2d at 1377-78.

103 An institutional ethics committee evaluates the ethics of a treatment decision rather than the attending physician's diagnosis and treatment plan. See Judicial Council of the Am. Medical Ass'n, Guidelines for Ethics Committees in Health Care Institutions, JAMA, May 10, 1985, at 2698; Norman Fost & Ronald E. Cranford, Hospital Ethics Committees, JAMA, May 10, 1985, at 2687, 2689. Some courts have expressly declined to require ethics committee involvement in end-of-life treatment decisions. See In re L.H.R., 321 S.E.2d 723 (Ga. 1984); Saikewicz, 370 N.E.2d at 434. But see In re Quinlan, 355 A.2d at 671-72.

104 Cf. John F. Kennedy Hosp. v. Bludworth, 452 So.2d at 926; In re Quinlan, 355 A.2d at 671; In re Colyer, 660 P.2d at 751.

105 All states that receive funds under the Developmental Disabilities Act must have a protection and advocacy office to ensure that developmentally disabled clients receive the treatment to which they are legally entitled. 42 U.S.C. § 6042(a)(1) (1988).

106 Some states, including Nebraska, New Jersey, Michigan, Minnesota, and New York, also have an ombudsman's office that works on behalf of developmentally disabled clients. See, e.g., MINN. STAT. § 245.94(2) (1992); N.Y. MENTAL HYG. LAW § 13.34 (Consol. 1992). The New York State Commission on Quality Care for the Mentally Disabled operates as both the protection and advocacy office under the federal Developmental Disabilities Act and as an ombudsman for the mentally retarded. N.Y. MENTAL HYG. LAW § 80.05 (Consol. 1992). The Minnesota Ombudsman's Office works on behalf of all clients with mental disabilities, including the mentally ill, and operates independently of the protection and advocacy office. MINN. STAT. § 245.94(2) (1992). Incidents of death and serious injury in institutional settings are a particular focus for the Minnesota Ombudsman. Id.

107 See Cruzan, 110 S.Ct. at 2877 (Brennan, J., dissenting) (quoting In re jobes, 529 A.2d at 445); Rhoden, supra note 14, at 437-39; PRESIDENT's COMMISSION REPORT, supra note 14, at 127-28.

108 See In re Hamlin, 689 P.2d 1372, 1381 (Rosellini, J., dissenting) (acknowledging that financial relationships may play a role in a family member's decision). Unless the developmentally disabled state ward has assets that family members stand to inherit, financial motives will not play a role in family members’ life-sustaining treatment decisions for these patients.

109 Dresser, supra note 17, at 395-96; Rhoden, supra note 14, at 440 (discussing relatives of Alzheimer's patients).

110 Dresser, supra note 17, at 396.

111 PRESIDENT's COMMISSION REPORT, supra note 14, at 129-30.

112 See In re Drabick, 245 Cal. Rptr. at 848; In re Browning, 543 So. 2d at 270 (Fla.App. 2 Dist. 1989); PRESIDENT's COMMISSION REPORT, supra note 14, at 131.

113 In states with very explicit public guardianship laws, family members may have been legally excluded from making many decisions regarding the ward's care. See, e.g., CONN. GEN. STAT. § 19a-571 (1991); N.C GEN. STAT. § 90-322(b) (1990); OKLA. STAT. ANN. tit. 63, § 3080.5(C) (West 1991); TEX. HEALTH & SAFETY CODE ANN. § 672.003 (West 1991).

114 See Lewin, supra note 8, at 32.

115 In re jobes, 529 A.2d at 447.

116 See, e.g., Lobe, supra note 19, at 66 (listing state statutes that allow family members or guardians to authorize the foregoing of life-sustaining treatment for certain incompetent patients, without judicial approval). One such statute has been applied in the case of a developmentally disabled adult. See In re Lawrence, 579 N.E.2d 32.

117 E.g., Barber v. Superior Court, 195 Cal. Rptr. 484 (Cal. App. 2d Dist. 1983); John F. Kennedy Hosp. v. Bludworth, 452 So. 2d 921; Foody v. Manchester Memorial Hosp., 482 A.2d 713 (Conn. 1984); In re Grant, 747 P.2d 445; In re Colyer, 660 P.2d 738.

118 Cf. Veatch, supra note 14, at 428 (advocating appointing someone already connected to the ward as guardian and giving her greater discretion in life-sustaining treatment decisions).

119 But see In re Moorhouse, 593 A.2d 1252, 1262 (N.J. 1991) (holding that a public advocate must always participate in the case of a never-competent ward of a state hospital).

120 CANTOR, supra note 14, at 120; Annas, George S. & Glantz, Leonard H., The Right of Elderly Patients to Refuse Life-Sustaining Treatment, 64 MILBANK Q. 95, 136 (Supp. 2 1986).CrossRefGoogle Scholar

121 Prognosis committees review treating physicians’ medical decisions. STATE COURT GUIDELINES, supra note 1, at 87 n.138.

122 See John F. Kennedy Hosp. v. Bludworth, 452 So. 2d at 926; In re Jobes, 529 A.2d at 448; In re Grant, 747 P.2d at 456. But see Annas & Glantz, supra note 120, at 129 (criticizing requirement that two independent physicians concur in attending physician's treatment decision in the case of nursing home residents on the grounds that it is sufficiently difficult to find one physician to visit a nursing home, let alone a total of three).

123 See In re Colyer, 660 P.2d at 749.

124 In re Grant, 747 P.2d at 456.

125 Coma, a form of short-term unconsciousness caused by extensive damage to the brain stem, may result in varying degrees of cognitive and physical recovery or severe, chronic, neurological impairment. Council on Scientific Affairs and Council on Ethical and Judicial Affairs, American Medical Association, Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support, 263 JAMA 426, 427 (1990)CrossRefGoogle Scholar [hereinafter JAMA PVS Piece].

126 See id. at 428.

127 Cranford, supra note 32, at 28.

128 See Ronald E. Cranford, A Hostage to Technology, 20 HASTINGS CENTER REP., Sept./Oct. 1990, at 9-10.

129 STATE COURT GUIDELINES, supra note 1, at app. B n. 11.

130 JAMA PVS Piece, supra note 125, at 428.

131 Cruzan, 110 S.Ct. at 2868 n.8 (Brennan.J., dissenting) (quoting amicus curiae brief of the American Medical Association).

132 PRESIDENT's COMMISSION REPORT, supra note 14, at 182.

133 See id. at 183; AMERICAN NEUROLOGY GUIDELINES, supra note 19, at 126. See also Cranford, Ronald E. & Smith, David R., Consciousness: The Most Critical Moral (Constitutional) Standard for Human Personhood, 13 AM. J.L. & MED. 233, 241-42 (1987)Google Scholar (arguing that the goals of medicine are inapplicable to patients in a persistent vegetative state). But see Grisez, Germain, Should Nutrition and Hydration Be Provided to Permanently Unconscious and Other Mentally Disabled Persons?, 5 ISSUES L. & MED. 165, 175-79 (1989)Google Scholar (advocating life-sustaining treatment for patients in a persistent vegetative state).

134 See Quinn, Kevin P., Best Interests of Incompetent Patients: The Capacity for Interpersonal Relationships as a Standard for Decisionmaking, 76 CAL. L. REV. 897, 901, 931 (1988)CrossRefGoogle Scholar; Rhoden, supra note 14, at 442.

135 See Cruzan at 2886-87 (Stevens, J. dissenting); Cantor, Norman L., The Permanently Unconscious Patient, Nonfeeding and Euthanasia, 15 AM. J.L. & MED. 381, 411 & nn. 99-101 (1989).Google Scholar

136 The Cruzan case is the exception. See Cruzan ex rel. Cruzan v. Harmon, 760 S.W. 2d 408 (Mo. 1988) aff'd sub nom. Cruzan v. Director, Missouri Dept. of Health, 110 S.Ct. 2841 (1990).

137 See, e.g. ARK. CODE ANN. § 20-17-202 (Michie 1987); N.M. STAT. ANN. § 24-7-3 (1978); Cruzan 110 S.Ct. at 2888 n.21 (Stevens, J., dissenting) (citing state court decisions that authorize foregoing life-sustaining treatment for patients in a persistent vegetative state).

138 HASTINGS CENTER GUIDELINES, supra note 4, at 94-97.

139 See Shapiro, Robyn S., The Case of L. W.: An Argument for a Permanent Vegetative State Treatment Statute, 51 OHIO ST. L.J. 439, 439 (1990).Google Scholar

Positron emission topography (PET) is a promising tool for distinguishing the persistent vegetative state from other conditions. See JAMA PVS Piece, supra note 125, at 427-28.

140 STATE COURT GUIDELINES, supra note 1, at app. B. The question of permanence of the condition depends upon the patient's age, the type of injury, and the duration of unconsciousness thus far. JAMA PVS Piece, supra note 125, at 427-28.

141 Id. at 428.

142 Wanzer, Sidney H. et al., The Physician's Responsibility Toward Hopelessly Ill Patients, 310 NEW ENG. J. MED. 955, 958-59 (1984).CrossRefGoogle Scholar

143 See In re Conroy, 486 A.2d 1232; EDWARD W. KEYSERLINK, SANCTITY OF LIFE OR QUALITY OF LIFE (1979).

144 See In re Grant, 747 P.2d at 451.

145 See Rhoden, supra note 14, at 442.

146 HASTINGS CENTER GUIDELINES, supra note 4, at 28.

147 ALS is a motor neuron disease characterized by muscle weakness and atrophy that usually causes death within two to five years. THE MERCK MANUAL 1438 (15th ed. 1987). Competent patients have sought to discontinue life-sustaining treatment when they reach the final stages of ALS. See In re Farrell, 429 A.2d 404 (N.J. 1987).

148 See Neu, Steven & Kjellstrand, Carl M., Stopping Long Term Dialysis, 314 NEW ENG. J. MED. 14 (1986).CrossRefGoogle Scholar

149 Batten's disease (cerebral sphingolipidosis) is a degenerative disease of the central nervous system that causes death when brain control of the heart and lungs deteriorates and cardiac or respiratory arrest results. STEDMAN's MEDICAL DICTIONARY 1448. See In re Grant, 747 P.2d at 446.

150 See In re Storar, 420 N.E.2d at 69.

151 Some suggested tests for foregoing treatment recommend an evaluation of the patient's ability to engage in interpersonal relations (Quinn, supra note 134, at 901; CALLAHAN, supra note 7, at 179-80) or to live a “cognitive and sapient life.” In re Peter, 529 A.3d 419, 424 (N.J. 1987). These tests are at best irrelevant, and at worst harmful, however, in evaluating a patient who perhaps has never functioned at more than a minimal cognitive level and may have had very limited interpersonal relations.

152 370 N.E.2d at 431.

153 But see Peters, supra note 84, at 947 (defending Saikewicz court's evaluation of benefits and burdens involved with treating that particular patient).

154 See Neu & Kjellstrand, supra note 148.

155 See In re Conroy, 486 A.2d at 1242; In re Grant, 747 P.2d at 457.

156 See In re Hamlin, 689 P.2d at 1375 (defining “best interests” as “particularized consideration of the best interests and rights of the specific individual”).

157 See In re Storar, 420 N.E.2d at 72-73; John A. Robertson, Cruzan: No Rights Violated, 20 HASTINGS CENTER REP. Sept./Oct. 1990, at 8-9.

158 Bopp, James M., Reconciling Autonomy and the Value of Life, 38 J. AM. GERIATRIC SOC'Y 600, 602 (1990).CrossRefGoogle Scholar See also George Annas, The Case of Mary Hier: When Substituted Judgment Becomes Sleight of Hand, HASTINGS CENTER REP., Aug. 1984, at 23.

159 In re Estate of Longeway, 549 N.E.2d at 299; HASTINGS CENTER GUIDELINES, supra note 4, at 134.

160 Liacos, Paul J., Is Substituted Judgment a Valid Legal Concept?, 5 ISSUES L. & MED. 215, 221 (1989).Google Scholar

161 See, e.g., Mitchell ex rel. Rasmussen v. Fleming, 741 P.2d at 689; PRESIDENT's COMMISSION REPORT, supra note 14, at 135 n.43 (defining quality of life as value of patient's life to the patient).

162 PRESIDENT's COMMISSION REPORT, supra note 14, at 135; Rhoden, supra note 14, at 437.

163 In one Washington state case, an incompetent patient who suffered from cancer of the larynx strongly objected to the loss of speech that would result from surgery. The patient already had a limited life expectancy due to a pre-existing lung disease. The trial court held that surgery was required because it was the most effective course of treatment. That decision was reversed on appeal in order to honor the patient's wish that his voice be preserved. In re Ingram, 689 P.2d 1363, 1370 (Wash. 1984). For a discussion of the danger of giving too much weight to the apparent wishes of an incompetent patient, see Annas, supra note 158.

164 where a patient suffers from a developmental disability due to a terminal illness, (e.g., Batten's Disease), the developmental disability may be considered to the extent it genuinely relates to the medical treatment decision. See Peters, supra note 84, at 947.

165 See HASTINGS CENTER GUIDELINES, supra note 4, at 135-37.

166 See In re Grant, 747 P.2d at 455; PRESIDENT's COMMISSION REPORT, supra note 14, at 135-36 (advising caution in consideration of family interests).

167 See In re Drabick, 245 Cal. Rptr. 840.

168 In re Jobes, 529 A.2d at 445.

169 For one approach to prioritizing health care in general now under debate, see Klevit, Harvey D. et al., Prioritization of Health Care Services: A Progress Report by the Oregon Health Services Commission, 151 ARCHIVES OF INTERNAL MED. 912 (1991).CrossRefGoogle Scholar

170 See PRESIDENT's COMMISSION REPORT, supra note 14, at 99 (indicating the United States can afford life support). Cf. KEYSERLINGK, supra note 143, at 104 (advocating that where pain can be controlled so that a patient could function at a minimal level, “society should be willing to bear the considerable expense and burden to provide the necessary care and other aids”). But see CANTOR, supra note 14, at 86-87; Cranford & Smith, supra note 133, at 246; Maxwell J. Mehlman, Rationing Expensive Lifesaving Medical Treatments, 1985 Wis. L. REV. 239, 300 (arguing against expenditures to maintain anyone on the verge of death—especially anyone in a persistent vegetative state).

171 CALLAHAN, supra note 7, at 127; Dresser, supra note 17, at 403.

172 Under the Medical Assistance program, the state is responsible for paying a portion of the cost of care for developmentally disabled patients and the federal government pays the rest. 42 U.S.C.A. § 1396 et seq. (West 1992). The state's financial incentive would be reduced by having an ombudsman oversee the public guardian, who is usually employed by the state agency financially responsible for the patient's care.

173 E.g., Uniform Rights of the Terminally Ill Act, ME. REV. STAT. ANN. tit. 18-A, § 5-706(b) (West 1981 and 1991 Supp.) (omitting discussion of health care provider's responsibility to provide palliative care); In re Gardner, 534 A.2d at 956; KEYSERLINGK, supra note 143, at 72, 111, 189.

174 See McKay v. Bergstedt, 801 P.2d 617, 631 (Nev. 1990) (quoting State v. McAfee, 385 S.E.2d 651, 652 (Ga. 1989)); see also In re Swan, 569 A.2d 1202, 1206 (Me. 1990).

175 Id. See Joanne Lynn, Supportive Care for Dying Patients: An Introduction for Health Care Professionals, in PRESIDENT's COMMISSION REPORT, supra note 14, at 275, 277-78.

176 HASTINGS CENTER GUIDELINES, supra note 4, at 71.

177 See Annas & Glantz, supra note 120, at 110 (arguing that judges, rather than families and physicians, have “a social mandate to distill the values” on which decisions to withdraw lifesustaining treatment should be based); Baron, Charles H., Medical Paternalism and the Rule of Law: A Reply to Dr. Relman, 4 AM. J.L. & MED. 337, 347 (1979)Google Scholar (advocating accountability of judicial decisions, as compared to the private choices of doctors and surrogates); Liacos, supra note 160, at 221-22 (advocating judicial decisions as free of the family's emotional ties to the patient and the physician's mixed professional motives about allocating care).

178 Cf. Farnsworth, Richard, The Impact of Judicial Review of Patients Refusal to Accept Antipsychotic Medications at the Minnesota Security Hospital, 19 BULL. AM. ACAD. PSYCHIATRIC L. 33, 40 (1991).Google Scholar Courts approved nearly 100 percent of antipsychotic medication treatments proposed by the state hospital medical staff. Id.

179 Id. Dr. Farnsworth found that, in non-emergency situations, committed mentally ill patients whose drug therapies were subject to judicial review waited 80 days longer for treatment than patients not subject to judicial review. See also Howell, supra note 86, at 367 (elderly retarded patients); Rhoden, supra note 14, at 445 (mentally impaired patients in state institutions); STATE COURT GUIDELINES, supra note 1, at 102 n.149.

180 E.g., Mitchell ex rel. Rasmussen v. Fleming, 741 P.2d at 681 n.4 (listing cases where patient died pending appeal).

181 See Rhoden, supra note 14, at 434.

182 See, e.g., John F. Kennedy Hosp. v. Bludworth, 452 So.2d at 926; In re Hamlin, 689 P.2d at 1378.

183 For a discussion of the possible responsibilities of a guardian ad litem, see Gottlich, Vicki, The Effects of the Cruzan Case on the Rights of Elderly Clients, 24 CLEARINGHOUSE REV. 663, 667 (1990)Google Scholar; Baron, Charles H., Assuring ‘Detached But Passionate’ Investigation and Decision Making, 4 AM. J.L. & MED. 111, 129-30 (1978).Google Scholar

184 For an overview of the case law on the-role of institutional ethics committees in lifesustaining treatment cases, see Susan M. Wolf, Ethics Committees in the Courts, 16 HASTINGS CENTER REP., June 1986, at 12.

185 Mitchell ex rel. Rasmussen v. Fleming, 741 P.2d at 691.

186 See Cruzan, 110 S.Ct. at 2853-55; In re Colyer, 660 P.2d 738. Cf. Addington v. Texas, 441 U.S. 418, 423 (1979) (holding that the Due Process Clause of the Fourteenth Amendment requires the use of the clear and convincing standard of proof in state civil commitment hearings).

187 E.g., THE COUNCIL ON ETHICAL & JUDICIAL AFFAIRS, AMERICAN MEDICAL ASSOCIATION, CURRENT OPINIONS 2.21 (1989); HASTINGS CENTER GUIDELINES, supra note 4, at 19.

188 See STATE COURT GUIDELINES, supra note 1, at 92-93; Gray ex rel. Gray v. Romeo, 697 F. Supp. 580, 591 (D.R.I. 1988).

189 No reported appellate opinions decide whether a court may require an individual physician to act contrary to the physician's personal ethical views. Cf. In re Morrison, 253 Cal. Rptr. 530 (1988) (recognizing such a requirement would pose a dilemma). Courts have generally ruled against an objecting facility where surrogates sought a requirement to carry out a decision to forego life-sustaining treatment. See Gray 697 F. Supp. at 591 (holding facility responsible for a patient's care unless prompt transfer to another willing facility possible); In re Jobes, 529 A.2d 434, 450 (mandating nursing home compliance where it had not advised the patient's family of possible objections at the time of admission, and it appeared no other facility would accept the patient); Elbaum ex rel. Elbaum v. Grace Plaza of Great Neck, 544 N.Y.S.2d 840, 847-48 (1989). But see Brophy v. New England Sinai Hosp., 497 N.E.2d 626, 638-39 (Mass. 1986) (facility could not be required to participate in treatment withdrawal; patient must be transferred home or to a willing facility).

190 Loftus, Irene Prior, I Have a Conscience Too: The Plight of Medical Personnel Confronting the Right to Die, 65 NOTRE DAME L. REV. 699, 729-30 (1990).Google Scholar

191 Ibanez, Rose Marie, Dignified Death: The Right to Refuse Life-Sustaining Treatment and Demand Continuing Care at a Private Institution, 32 ARIZ. L. REV. 717, 734 n.175 (1990).Google Scholar

192 See, e.g., In re L.H.R., 321 S.E.2d 723 (1984) (extending rule in case involving infant patient to cover permanently unconscious adults in future cases).

193 E.g., Mitchell ex rel. Rasmussen v. Fleming, 741 P.2d at 692; In re Conroy, 486 A.2d at 1220-21; In re Hamlin, 689 P.2d at 1379; Satz v. Perlmutter, 379 So. 2d 359, 360 (Fla. 1980).