A critique of family members as proxy decisionmakers without legal limits

Issues in Law and Medicine

Volumn 12, Issue 2, 1996, Pages 133-165

  Bopp Jr , James ^a,b,c   Coleson, Richard E ^a,b,d  

^a Bopp Coleson and Bostrom   (United States)

^b National Legal Center for the Medically Dependent and Disabled Inc (NLCMDD)

^c National Right to Life Committee

^d Indiana Citizens for Life ^*

Author keywords

[No Author keywords available]

Indexed keywords

ADULT CHILD; ARTICLE; DEATH AND EUTHANASIA; DECISION MAKING; DISABLED PERSON; FAMILY; HUMAN; IN RE LAWRANCE; INFORMED CONSENT; JUVENILE; LEGAL APPROACH; LEGAL ASPECT; PARENTAL CONSENT; PATIENT ADVOCACY; PERSONAL AUTONOMY; PROFESSIONAL PATIENT RELATIONSHIP; SOCIOECONOMICS; TREATMENT WITHDRAWAL; UNITED STATES;

DEATH AND EUTHANASIA; IN RE LAWRANCE; LEGAL APPROACH; PROFESSIONAL PATIENT RELATIONSHIP;

ADULT CHILDREN; DECISION MAKING; DISABLED PERSONS; FAMILY; HUMANS; INFORMED CONSENT; MINORS; PARENTAL CONSENT; PATIENT ADVOCACY; PERSONAL AUTONOMY; UNITED STATES; VALUE OF LIFE; WITHHOLDING TREATMENT;

EID: 0030226253     PISSN: 87568160     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (240)

1. ARC Resolution on Cessation of Nutrition and/or Hydration, 3 ISSUES IN LAW & MED. 313 (1987);
2. TASH Resolution on Nutrition and Hydration, 3 ISSUES IN LAW & MED. 315 (1987);
3. United Handicapped Federation Resolution, 3 ISSUES IN LAW & MED. 317 (1987).
4. TOM L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 59-61 (2d ed. 1983).
5. Id. at 60.
6. JOHN S. MILL, On Liberty, in UTILITARIANISM, LIBERTY, AND REPRESENTATIVE GOVERNMENT 95-96 (1951).
7. Schloendorff v. Society of New York Hospitals, 105 N.E. 92, 93 (N.Y. 1914).
8. Union Pacific Railway Co. v. Botsford, 141 U.S. 250, 251 (1891).
9. See, e.g., Canterbury v. Spence, 464 F.2d 772 (D.C. Cir. 1972), cert. denied, 409 U.S. 1064.
10. Cf. Mill, supra note 4. Notably, in the cited passage Mill declares: It is, perhaps, hardly necessary to say that this doctrine [of individual sovereignty over one's own self] is meant to apply only to human beings in the maturity of their faculties. We are not speaking of children or of young persons below the age which the law may fix as that of manhood or womanhood. Those who are still in a state to require being taken care of by others must be protected against their own actions as well as against external injury. Id. at 95-96.
11. See James Bopp, Jr. & Daniel Avila, Perspectives on Cruzan: The Siren's Lure of Invented Consent: A Critique of Autonomy-Based Surrogate Decisionmaking for Legally Incapacitated Older Persons, 42 HASTINGS L.J. 779, 780 (1991)[hereinafter Bopp & Avila, Invented Consent].
12. In re Lawrance, 579 N.E.2d 32 (Ind. 1991).
13. Slip opinion of trial court, Record at 137, In re Lawrance, 579 N.E.2d 32 (Ind. 1991) (No. 29DO2-9103-GU-00041).
14. See P.H. Partridge, Freedom, in 3 ENCYCLOPEDIA OF PHILOSOPHY 221, 224 (Paul Edwards ed., 1967).
15. U.S. Const. amend. XIV, § 1.
16. Cruzan v. Director, Mo. Dep't of Health, 110 S. Ct. 2841, 2853 (1990).
17. David F. Forte, The Role of the Clear and Convincing Standard of Proof in Right to Die Cases, 8 ISSUES IN LAW & MED. 183, 197 (1992).
18. 5ee id., citing inter alia Furman v. Georgia, 408 U.S. 238, 359 n.141 (1972) (Marshall, J., concurring); Ford v. Wainright, 477 U.S. 399, 409 (1986).
19. Furman v. Georgia, 408 U.S. at 286 (Brennan, J., concurring).
20. Cruzan, 110 S. Ct. at 2852.
21. Id.
22. James Bopp, Jr. & Daniel Avila, The Due Process "Right to Life" in Cruzan and Its Impact on "Right-to-Die" Law, 53 U. PITT. L. REV. 193, 211 (1991)
23. [hereinafter Bopp & Avila, "Right to Life" in Cruzan].
24. Id. at 211-12.
25. In re Westchester County Medical Center, 531 N.E.2d 607, 613 (N.Y. 1988) ("Every person has a right to life . . . .").
26. Robert A. Destro, 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'Y 71, 100 (1986)
27. (citing The Declaration of Independence ¶ 2 and CONG. GLOBE, 40th Cong., 1st Sess. 542 (1867)).
28. Id.
29. Id. at n.122 (citing Loan Association v. Topela, 87 U.S. (20 Wall) 655, 662 (1875)). See also In re Westchester County Medical Center, 531 N.E.2d 607, 613 (N.Y. 1988) ("Every person has a right to life."); Hon. Edward D. Robertson, Jr., Is "Substituted Judgment" a Valid Legal Concept? 5 ISSUES IN LAW & MED. 197, 213 (1989).
30. See Bopp & Avila, "Right to Life" in Cruzan, supra note 20, at 212-19.
31. See Bopp & Avila, Invented Consent, supra note 9, at 779.
32. D.G. McLone, The Handicapped Newborn: Diagnosis, Prognosis, and Outcome: The Neonatal View, Presentation at the Conference on the Handicapped Newborn in American Society, Fordham University 11 (Mar. 28, 1985)(unpublished paper on file with the National Legal Center for the Medically Dependent and Disabled, Inc.).
33. Id.
34. Id. at 8-12.
35. Id. at 8-10.
36. Id. at 10-12.
37. Nancy K. Rhoden, Litigating Life and Death, 102 HARV. L. REV. 375, 439 (1988).
38. Id.
39. Paul Bridge & Mariys Bridge, The Brief Life and Death of Christopher Bridge, HASTINGS CENTER REP., Dec. 1981, at 17, 19.
40. "'A physician's ability to preserve his power over the doctor-patient relationship depends largely on his ability to control the patient's uncertainty.'" Thus, a doctor may withhold information at the patient's expense. Lyn Quine & Jan Pahl, First Diagnosis of Severe Handicap: A Study of Parental Reactions, 29 DEVELOPMENTAL MED. & CHILD NEUROLOGY 232, 237 (1987).
41. Id.
42. J.H. Walker et al., Spina Bifida - and the Parents, 13 DEVELOPMENTAL MED. & CHILD NEUROLOGY 462, 466 (1971).
43. Raymond S. Duff & A.G.M. Campbell, Moral and Ethical Dilemmas in the Special-Care Nursery, 289 NEW ENG. J. MED. 890, 893 (1973).
44. Walker et al., supra note 38, at 466.
45. Id.
46. Bridge & Bridge, supra note 35, at 19.
47. Norman Fost, Counseling Families Who Hove a Child with a Severe Congenital Anomaly, 67 PEDIATRICS 321, 322 (1981).
48. One woman in the Walker study admitted, "[T]He first time I saw 'Spina Bifida' on the medical card . . . I had to ask what it meant . . . ." Walker et al., supra note 38, at 466.
49. Id.
50. Id.
51. Bridge & Bridge, supra note 35, at 19.
52. Id.
53. Id.
54. See, e.g., Dallas M. High, A New Myth About Families of Older People? 31 GERONTOLOGIST 611 (1991); Rhoden, supra note 33;
55. Robert M. Veatch, Limits of Guardian Treatment Refusal: A Reasonableness Standard, 9 AM. J.L. & MED. 427 (1984).
56. See, e.g., Bridge & Bridge, supra note 35; Edward B. Charney, Parental Attitudes Toward Management of Newborns with Myelomeningocele, 32 DEVELOPMENTAL MED. & CHILD NEUROLOGY 14 (1990);
57. Dennis Drotar et al., The Adaptation of Parents to the Birth of an Infant with a Congenital Malformation: A Hypothetical Model, 56 PEDIATRICS 710 (1975); Fost, supra note 43; Quine & Pahl, supra note 36; Walker et al., supra note 38, at 466.
58. Drotar et al., supra note 51; T.S. Ellis III, Letting Defective Babies Die: Who Decides? 7 Am. J.L. & Med. 393, 411 (1981); Fost, supra note 43; Walker et al., supra note 38, at 466.
59. Duff & Campbell, supra note 39, at 893.
60. Quine & Pahl, supra note 36, at 233; Ellis, supra note 52, writes: In most instances, parents must make treatment decisions in the first few hours after birth, a period during which, typically, they are still reeling from shock, fear, and disappointment of learning that their child has a disability. Parents during this period are usually vulnerable to the suggestions of physicians, friends, and family and make decisions they later regret. Id. at 414 (citations omitted).
61. Bridge & Bridge, supra note 35, at 18.
62. Drotar et al., supra note 51, at 714.
63. Fost, supra note 43, at 321.
64. Walker et al., supra note 38, at 466.
65. Ellis, supra note 52, at 414.
66. Walker et al., supra note 38, at 466.
67. Fost, supra note 43, at 321.
68. Id.
69. Id.
70. Id.
71. Drotar et al., supra note 51, at 712.
72. Id.
73. Walker et al., supra note 38, at 466-67.
74. Duff & Campbell, supra note 39, at 893.
75. Drotar et al., supra note 51, at 712.
76. Id.
77. Walker et al., supra note 38, at 467.
78. Id. at 473.
79. Drotar et al., supra note 51, at 713.
80. Rhoden, supra note 33, at 439.
81. Ezekiel J. Emanuel & Linda L. Emanuel, Proxy Decision Making for Incompetent Patients: An Ethical and Empirical Analysis, 267 JAMA 2067, 2068 (1992).
82. Steven R. Steiber, Right to Die: Public Balks at Deciding for Others, HOSPITALS, Mar. 5, 1987, at 72, 72.
83. Rhoden, supra note 33, at 440.
84. Emanuel & Emanuel, supra note 75, at 2068 (citation omitted).
85. Rhoden, supra note 33, at 440.
86. Id.
87. Veatch, supra note 50, at 440.
88. Id.
89. J.A. Robertson & Norman Fost, Passive Euthanasia of Defective Newborn Infants: Legal Considerations, 88 PEDIATRICS 887 (1976).
90. Fost, supra note 43, at 323.
91. Rebecca Dresser, Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law, 28 ARIZ. L. Rev. 373, 395 (1986).
92. Bridge & Bridge, supra note 35, at 19.
93. Id. at 18-19.
94. Id. at 19.
95. Diane E. Meier & Christine K. Cassel, Nursing Home Placement and the Demented Patient, 104 ANNALS INTERNAL MED. 98, 102 (1986).
96. Dresser, supra note 85, at 396.
97. Linda C. Fentiman, Privacy and Personhood Revisited: A New Framework for Substitute Decisionmaking for the Incompetent, Incurably Ill Adult, 57 GEO. WASH. L. REV. 801, 811 (1989).
98. Id.
99. Id.
100. Rhoden, supra note 33, at 440.
101. Developmenis in the Law: Medical Technology and the Law, 103 HARV. L. REV. 1519, 1651 (1990)(citations omitted).
102. Rhoden, supra note 33, at 440; Nancy S. Jecker, The Role of Intimate Others in Medical Decision Making, 30 GERONTOLOGIST 65, 69 (1990).
103. Duff & Campbell, supra note 39, at 893.
104. Ellis, supra note 52, at 414.
105. Id.
106. Fentiman, supra note 91, at 810 (citation omitted).
107. Bridge & Bridge, supra note 35, at 19.
108. THe Rev. Harry Cole, a Presbyterian minister whose wife entered a comatose condition after a massive brain hemorrhage, admits of the enormous pressure. "If she were to go on that way, our family faced not only the incredible pain of watching her vegetate, but we also faced hard practical realities . . . . How could I send three kids to college with the additional financial strain?" N. Gibbs, Love and Let Die, TIME, Mar. 19, 1990, at 70.
109. Emanuel & Emanuel, supra note 75.
110. Id. at 2068.
111. Id. at 2069.
112. Id.
113. Id.
114. High, supra note 50, at 613.
115. Id.
116. Id.
117. See Dresser, supra note 85, at 379-81.
118. Id. at 379.
119. Id. at 376-79.
120. Id. at 379-81.
121. Id.
122. Id.
123. Duff & Campbell, supra note 39, at 893.
124. James L. Nelson, Taking Families Seriously, HASTINGS CENTER REP., July-Aug. 1992, at 6, 11.
125. Jecker, supra note 96, at 66.
126. Id.
127. Id. at 68.
128. Meier & Cassel, supra note 89, at 101.
129. Id.
130. Id.
131. Id.
132. Ellis, supra note 52, at 414.
133. Drotar et al., supra note 51, at 713.
134. Id. at 712.
135. Walker et al., supra note 38, at 466.
136. Id.
137. Id.
138. Id.
139. Drotar et al., supra note 51, at 713.
140. Id.
141. Id.
142. Walker et al., supra note 38, at 473.
143. Id.
144. Id. at 467.
145. Id.
146. Id.
147. Id.
148. Id.
149. Id.
150. Drotar et al., supra note 51, at 712.
151. Walker et al., supra note 38, at 466.
152. Id. at 467.
153. Duff & Campbell, supra note 39, at 892.
154. Id.
155. See, e.g., Rhoden, supra note 33; Veatch, supra note 50; High, supra note 50.
156. Veatch, supra note 50, at 446.
157. Id. at 445-46.
158. Id. at 446.
159. Id.
160. Id.
161. Id.
162. Id.
163. Planned Parenthood of Southeast Pa. v. Casey, 121 S. Ct. 2791 (1992).
164. Rhoden, supra note 33, at 437.
165. High, supra note 50, at 613.
166. In re Wanglie, No. PX-91-283, slip op. (D. Minn. May 14, 1991). In this case, a county hospital petitioned to have an independent conservator appointed for an incompetent patient in an attempt to remove the patient's ventilator against the patient's own previously expressed wishes and the wishes of her family.
167. Jecker, supra note 96, at 69.
168. Nelson, supra note 118, at 7.
169. Id.
170. Id. at 9.
171. Id.
172. Id.
173. Id.
174. In re Lawrance, 579 N.E.2d 32 (Ind. 1991).
175. Id. at 43.
176. Id. Indiana statutory law requires that "[a]n individual authorized to consent for another [in health care decisions for incompetent persons] shall act in good faith and in the best interest of the individual incapable of consenting." Ind. Code Ann. § 16-8-12-4(d) (West 1992).
177. Recent Cases, 105 HARV. L. REV. 1414, 1426 (1992).
178. Id. at 1429.
179. Id.
180. Id.
181. Id.
182. Id.
183. Id.
184. Id. at 1429-30.
185. Id. at 1430.
186. Id.
187. Id.
188. Id.
189. Id. at 1431 (emphasis added).
190. Id.
191. Id.
192. Id. (citations omitted).
193. Id.
194. Id.
195. Id.
196. See Bopp & Avila, "Right to Life" in Cruzan, supra note 20, at 212.
197. Id. The following discussion on the three areas where limitations are needed relies largely on the work cited, although primary references will be cited.
198. Cruzan v. Director, Mo. Dep't of Health, 110 S. Ct. 2841 (1990).
199. Nancy Cruzan was an incompetent Missouri woman allegedly in a so-called persistent vegetative state. Her guardians, her parents, sought to have her food and water withdrawn.
200. Cruzan, 110 S. Ct. at 2855.
201. Id. at 2852, 2856.
202. In re Westchester, 531 N.E.2d 607, 614 n.4 (N.Y. 1988); Fuentes v. Shevin, 407 U.S. 67, 94 n.31 (1971).
203. Cf. R.I. Simon, Silent Suicide in the Elderly, 17 BULL. AM. ACAD. PSYCHIATRY L. 83-89 (1989);
204. see also Peter Applebome, An Angry Man Fights to Die, Then Tests Life, N.Y. TIMES, Feb. 7, 1990, at A1 (Larry McAfee fought a court battle to be able to implement his decision to remove his respirator but upon winning decided to accept the respirator because disability rights advocates advised him of employment and housing opportunities open to him).
205. See also Robert O. Boorstin, When Suicide Is Not a Choice, N.Y. TIMES, Aug. 22, 1991, at A27.
206. Cruzan, 110 S. Ct. at 2855-56.
207. Id. at 2856.
208. Id. at 2853.
209. Id. at 2855.
210. Id. at 2852.
211. Id. at 2853.
212. McKay v. Bergstedt, 801 P.2d 617, 624 (Nev. 1990).
213. Id. at 622.
214. Id. at 623.
215. Bopp & Avila, "Right to Life" in Cruzan, supra note 20, at 215.
216. David C. Hadorn, The Oregon Priority-Setting Exercise: Quality of Life and Public Policy, HASTINGS CENTER REP., May-June 1991, supp. at 11, 13 (emphasis in original).
217. Bopp & Avila, "Right to Life" in Cruzan, supra note 20, at 206-08.
218. Id. at 202-06.
219. Id. at 219-21.
220. Id. at 221-22.
221. Id. at 222.
222. Id. at 222-23.
223. Id. at 223-24.
224. Id. at 224.
225. Id. at 224-25.
226. Id. at 225 (emphasis in original).
227. Id. at 225.
228. Late Corporation of the Church of Jesus Christ of Latter-day Saints v. United States, 136 U.S. 1, 57 (1890).
229. See, e.g., MO. ANN. STAT. §§ 475.010 to .480 (Vernon 1956 & Supp. 1991).
230. Cruzan v. Harmon, 760 S.W.2d 408, 425 (Mo. 1988) (en banc), aff'd sub nom. Cruzan v. Director, Mo. Dep't of Health, 110 S. Ct. 2841 (1990).
231. See, e.g., Santosky v. Kramer, 455 U.S. 745, 753 (1982); Pierce v. Society of Sisters, 268 U.S. 510, 535 (1925) (indicating that parents do not exercise control over their children as mere trustees of the state).
232. Prince v. Massachusetts, 321 U.S. 158, 166 (1944).
233. Parham v. J.R., 442 U.S. 584, 602-03 (1979).
234. Id.
235. Wisconsin v. Yoder, 406 U.S. 205, 234 (1972).
236. See, e.g., Commonwealth v. Addicks, 5 Binn 520 (Pa. 1813).
237. Daniel B. Griffith, The Best Interests Standard: A Comparison of the State's Parens Patriae Authority and Judicial Oversight in Best Interests Determinations for Children and Incompetent Patients, 7 ISSUES IN LAW & MED. 283, 300 (1991).
238. 420 N.E.2d 64, 73 (N.Y. 1981).
239. Thomas J. Marzen et al., Suicide: A Constitutional Right? 24 DUQ. L. REV. 1 (1985).
240. In re Lawrence, 579 N.E.2d 32 (Ind. 1991).