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Baby Doe, Congress and the States: Challenging the Federal Treatment Standard for Impaired Infants

Published online by Cambridge University Press:  24 February 2021

Stephen A. Newman
Stephen A. Newman*
Affiliation:
New York Law School
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Abstract

In its amendments to the Child Abuse Prevention and Treatment Act, Congress set forth a strict standard for treatment of impaired infants. The statute, shaped by right-to-life groups and certain medical organizations, calls for aggressive treatment in virtually all cases, regardless of the degree of suffering imposed and the burdens and risks involved. The federal rule evidences deep distrust of parental decisionmaking, relegating most parents to a nonparticipatory bystander role.

Congress did not make its rule binding on the states. Rather, it conditioned the receipt of federal funds upon incorporation of the rule into each state's law. Most states have accepted the condition, largely through rulemaking by state child abuse agencies.

This article challenges the authority of state administrators to promulgate these rules, and argues that state constitutions, little mentioned in the Baby Doe debate thus far, may prohibit many states from adopting the federal standard. Ordering medical interventions that perpetuate extreme conditions of physical and mental devastation, subjecting infants to grave suffering for uncertain benefits, and depriving parents of virtually all decisionmaking power violates the norm of governments constitutionally committed to individual liberty, human dignity and family autonomy. A constitutionally sound approach to this issue would permit careful, ethical deliberation, attention to the individual circumstances of each infant Doe and a reasonable degree of parental control.

Type
Articles
Information
American Journal of Law & Medicine , Volume 15 , Issue 1 , 1989 , pp. 1 - 60
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1989

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References

1 CBS Evening News With Dan Rather 13 (CBS television broadcast, Nov. 10, 1983)(editorial commentary by Bill Moyers)(transcript on file at CBS, Inc.).

2 42 U.S.C. §§5101-05 (1984).

3 Right to life groups played a major role in negotiations leading to the enactment of the statute. For an account of the negotiations from the right to life perspective, see Gerry, & Nimz, , The Federal Role in Protecting Babies Doe, 2 Issues L. & Med. 339 (1987).Google Scholar

4 Id. at 349.

5 Id. at 354.

6 Id.

7 See, e.g., 17 Minn. Stat. Ann. § 260.015 (10)(e) (Supp. 1988); Mont. Code Ann. § 41-3-102 (Supp. 1987); Okla. Stat. Ann. tit. 10, § 1101 (West 1987).

8 See, e.g., Neglect and Dependency, Minn. Stat. Ann. § 260.015 § 2(a)(5) (West 1989); Reporting of Maltreatment of Minors, Minn. Stat. Ann. § 626.556 § 2(c) and 10(c) (West 1989); Definitions for Alleged Withholding of Appropriate Nutrition, Hydration, Medication, or Medically Indicated Treatment from Disabled Infants with Life-Threatening Conditions, Ohio. Admin. Code §§ 5101:2-35-76, 5101:2-35-77 (1985). Investigation of Reports of Suspected Medical Neglect of Handicapped Infants Including Instances of Withholding of Medically Indicated Treatment for Disabled Infants with Life-Threatening Conditions, Circular Letter No. SSA 86-3 (1985)(issued by the Md. Dep't of Human Resources); Wyo. Dep't of Health & Social Services, Procedures for Rfsponimnc to Reports of Withholding Medically Indicated Treatment From Disabled Infants with Life-Threatening Conditions, 6 Children & Family Services Manual (1987).

9 See infra text accompanying note 26.

10 42 U.S.C. §5102 (1984).

11 42 U.S.C. §5103 (1984).

12 49 Fed. Reg. 48,164 (1984)(to be codified at 45 C.F.R. § 1340)(proposed Dec. 10, 1984). Although the HHS did not include this and other examples in its final rules, it did not disavow its extreme views. Rather, it explained that its examples of specific diagnoses were deleted to “avoid the essential thrust of the interpretive guidelines being lost amidst uncertainty regarding how the addition or subtraction of particular complications or medical nuances might affect the examples.” 50 Fed. Reg. 14,880 (1985)(to be codified at 45 C.F.R. pt. 1340).

13 Yale Univ. School of Medicine, Comments on Department of Health and Human Services Proposed Regulations on the Care of Handicapped Infants 4 (Jan. 25, 1985)(available at Yale Univ. School of Medicine, Dep't of Pediatrics).

Professor Nancy Rhoden describes Tay Sachs disease as follows:

Tay-Sachs is an inherited metabolic disorder found predominantly in persons of Ashkenazic Jewish descent. A Tay-Sachs baby may appear normal at birth, but within a few months develop some degree of motor weakness. As muscle tone deteriorates, Tay-Sachs infants will develop difficulty in swallowing, followed by increasing paralysis, spasticity, deafness, blindness, and convulsions. By age two or three, they become virtually vegetative, and they die by age four or five. Because these infants will get recurrent infections, treatment decisions may involve artificial respiration, resuscitation, or aggressive use of antibiotics.

Rhoden, , Treatment Dilemmas for Imperiled Newborns: Why Quality of Life Counts, 58 S. CAL. L. REV. 1283, 1292 (1985).Google Scholar

14 Id. at 1297.

15 See generally id. at 1283.

16 S. Rep. No. 246, 98th Cong., 2d Sess. 4 (1983), reprinted in 1984 U.S. Code Cong. & Admin. News 2918, 2922. The Secretary of the HHS promptly notified hospitals not to withhold medical or surgical treatment or nutrition from handicapped newborns, and suggested that if parents refused to consent to any treatments the hospital should evict the newborn from its facilities. 47 Fed. Reg. 26,027 (1982).

17 48 Fed. Reg. 9631 (1983); 45 C.F.R. § 84.61 (1985). The key provisions of the regulations were invalidated by the Supreme Court in Bowen v. American Hosp. Ass'n, 476 U.S. 610 (1986). A valuable account of the medical, social and political developments surrounding the infant Doe rules is found in Reiser, , Survival At What Cost? Origins and Effects of the Modem Controversy on Treating Severely Handicapped Newborns, 11 J. Health Pol. Pol'y & L. 199, 199-212 (1986).CrossRefGoogle Scholar

18 Strain, , The American Academy of Pediatrics Comments on the “Baby Doe II” Regulations, 309 New Eng. J. Med. 443 (1983).CrossRefGoogle Scholar One of the six Senate sponsors of the statute said she was deeply troubled by the aggressive actions of the HHS. 130 CONG. REC. S9321 (daily ed. July 26, 1984)(statement of Sen. Kassebaum).

19 The HHS, limited to promulgating rules concerning state grant qualifications under the funding program of which the infant Doe rule is a part, took advantage of the opportunity left to it to issue its own “interpretations” of the law, attempting to narrow the treatment exceptions even further. Adverse criticism, including some from the Congressional sponsors of the law, caused the HHS to retreat from some but by no means all of its interpretive positions. See 50 Fed. Reg. 14,878, 14,879-80, 14,889 (to be codified at 45 C.F.R. § 1340)(appendix of non-binding “interpretative guidelines”).

20 See House Select Comm. on Children, Youth and Families, Abused Children in America: Victims of Official Neglect, H.R. Doc. No. 260, 100th Cong., 1st Sess. 43 (1987)[hereinafter Abused Children in America].

21 Other federal grant programs, such as Title XX of the Social Services Block Grants and Titles IVB and IVE of the Social Security Act, may distribute considerably greater sums. Abused Children In America, supra note 20, at 43-44. None of these other federal grant programs requires states to adopt the federal Baby Doe rule.

22 State by state allocations for F.Y. 1987 are available from the National Center on Child Abuse and Neglect in Washington, D.C. The House Select Committee Report noted that in F.Y. 1985, a number of states, including California, Florida, Illinois, Michigan. New Jersey, Pennsylvania and Texas, spent over $100 million on child abuse programs. Abused Children in America, supra note 20, at 64-65. Figures for the three states not participating in the CAPTA grant program: Pennsylvania spent $245,431,035 in F.Y. 1985 (measured in constant 1982 dollars); California spent $480,603,448; and Indiana spent $46,288,642. Id.

23 See infra note 201.

24 See American Med. Ass'n, Statement to the Dep't of Health and Human Services 7 (Feb. 8, 1985)(“In summary, the AMA objects to the approach taken by the Child Abuse Amendments of 1984 because they interfere with familial autonomy; they impose inferior governmental judgments regarding the degree of discretionary treatment for seriously ill newborns; and they rely on imprecise and ambiguous language.” The AMA also found the HHS proposed regulations improperly incorporated “a bias toward reducing parental autonomy to the greatest degree possible”).

25 In a letter to the HHS Secretary Margaret Heckler, the AAMC explained its opposition to the legislation:

The chief reason the AAMC and others refused to sign onto this compromise agreement was its failure to recognize that many severely ill newborns cannot be classified into the categories of those who will live or those who will die. These infants often have devastating neurological conditions which are so grave that they will preclude the infant from ever functioning as an independent human being; they may not be able to experience even the most fundamental human functions, such as recognizing their parents. Commonly, they have other medical conditions that require treatment if they are to survive. In making decisions about these infants, it is necessary to take into account the extent of neurological damage and the severity of the other diagnoses, the full range of treatment possibilities, and the risks associated with each. There are no quick or easy answers; there is no formula applicable to every infant with the same general diagnoses. A decision about each child must be made by the concerned parents and family and the physicians who have first hand knowledge about the condition of the child in question… . The difficult decisions occur when medical care is not clearly beneficial because it can reverse only certain aspects of the infant's condition, but cannot correct or reverse the underlying disease or the permanent brain damage. Resolving this dilemma is even more difficult when the treatment carries with it the significant possibility of terrible complications.

Letter from Dr. John A. D. Cooper, President of the Association of American Medical Colleges to the Hon. Margaret Heckler (Feb. 7, 1985) (available from the Association of American Medical Colleges, Washington, D.C.).

26 Polling data available from The Roper Center for Public Opinion Research in Storrs, Connecticut. For additional data on the public's views concerning medical life support, see discussion and citations in In re Jobes, 529 A.2d 434, 446 n.11 (N.J. 1987).

27 Kopelman, , Irons, & Kopelman, , Neonatologists Judge the “Baby Doe” Regulations, 318 New Eng.J. Med. 677, 679 (1988).CrossRefGoogle Scholar

28 Id.

29 President's Comm'n for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (1983)[Hereinafter President's Comm'n].

30 Id. at 214-18.

31 S. 1596, Cal. Leg. (1987)(available from the office of California Sen. Joseph B. Montoya).

32 Office of Inspector General, U.S. Dep't of Health and Human Services, Survey of State Baby Doe Programs 11 (1987).

33 Id. at 13.

34 New York's Family Court Act speaks of the failure to provide “adequate” medical care. N.Y. FAM. CT. ACT § 1012(f) (Consol. 1987).

35 See, e.g., 12A Mo. Ann. Stat. § 199-210.110(5) (Vernon 1987)(discusses tuberculosis sanatoriums); N.Y. Soc. Serv. Law § 34, 424 (Consol. 1987).

36 71 N.Y.2d 1, 517 N.E.2d 1350, 523 N.Y.S.2d 464 (1987).

37 Id. at 9, 517 N.E.2d at 1353, 523 N.Y.S.2d at 468.

38 Id. at 11, 517 N.E.2d at 1355, 523 N.Y.S.2d at 469.

39 N.Y. Pub. Health Law § 225(5)(2) (Consol. 1987).

40 Boreali, 71 N.Y.2d at 12, 517 N.E.2d at 1355, 523 N.Y.S.2d at 470.

41 Id.

42 Kirkley, , Fetal Survival—What Price?, 137 AM. J. OBST. & GYN. 873 (1980).CrossRefGoogle Scholar

43 See, e.g., Young, Caring for Disabled Infants, Hastings Center Rep., Aug. 1983, at 15; Lantos, , Baby Doe Five Years Later, 317 New Eng. J. Med. 444 (1987)CrossRefGoogle Scholar; Stevenson, Ariagno, , Kutner, , Raffin, & Young, , The ‘Baby Doe’ Rule, 255 J. A.M.A. 1909, 1911 (1986).Google Scholar Other programs, like universal prenatal care, compete for limited funding and may be more effective than after-the-fact intensive care in reducing the number and severity of birth defects. Lantos, supra, at 446-47. Such programs are also cost-effective. $400 Births That Cost S400,000, N.Y. Times, Aug. 22, 1988, (Editorial), at A18, col. 1. Furthermore, strong moral arguments have been made that government must first provide better care and facilities for children who survive with severe mental and physical incapacities; to compel treatment without providing for basic post-treatment needs is “patently hypocritical.” J. Lyons, Playing God in the Nursery 263 (1985); see also President's Comm'n, supra note 29, at 228-29. For further discussion of this point, see infra notes 212-19 and accompanying text.

44 See statutes cited supra note 7.

45 See, e.g., N.Y. Task Force on Life and the Law; N.J. Comm'n on Legal and Ethical Problems in the Delivery of Health Care. A former Solicitor General of New York writes that “legislative inaction on issues of consequence and controversy must be considered, in a very meaningful sense, to be governmental action. And if it is to provide a rationale for any posture by an administrative agency, that posture, the courts are saying, should be a respectful repose.” Hermann, What Is Going On Here?, N.Y.L.J., Apr. 18, 1988, at 2, col. 4.

46 United States v. University Hosp., State Univ. N.Y. at Stonybrook, 729 F.2d 144, 161 (2d Cir. 1984).

47 Cf. Society for Good Will to Retarded Children, Inc. v. Carey, 572 F. Supp. 1298, 1299 (E.D.N.Y. 1983)(distorting effect of budgetary pressures on sound professional judgment).

48 Rasmussen v. Fleming, 154 Ariz. 207, 225, 741 P.2d 674, 692 (1987) (opinion by Gordon, Chief J.) [hereinafter Rasmussen II]; see Rasmussen v. Fleming, 154 Ariz. 200, 741 P.2d 667 (1987)(opinion by Howard, J.)[hereinafter Rasmussen I].

49 See supra note 34.

50 See, e.g., In re Ray, 95 Misc. 2d 1026, 408 N.Y.S.2d 737 (Fam. Ct. 1978). Parents may not use their own religious beliefs to deny needed medical care for their child. See, e.g., In re Hamilton, 657 S.W.2d 425 (Tenn. App. 1983); In re Gregory S., 85 Misc. 2d 846, 380 N.Y.S.2d 620 (Fam. Ct. 1976).

51 “Neglect” hardly describes the behavior of parents or doctors. As an editorial in the New England Journal of Medicine observed, “most parents would give their lives for their children,” and doctors “are often accused of many wrongs in our society, but lack of therapeutic aggressiveness is not one of them.” Angell, , Handicapped Children: Baby Doe and Uncle Sam, 309 NEW ENG. J. MED. 659, 660 (1983)CrossRefGoogle Scholar; see also Nolan, , Imperiled Newborns, 17 Hastings Center Rep. 5 (1987)Google Scholar(new definitions “could include as abusers clinicians struggling to provide sensitive and humane care for infants”).

52 Cal. Penal Code § 1165.2 (West Supp. 1988).

53 47 N.Y.2d 648, 393 N.E.2d 1009, 419 N.Y.S.2d 936 (1979).

54 Id. at 655, 393 N.E.2d at 1013, 419 N.Y.S.2d at 940. Parents may rely upon the advice of a duly licensed physician, the court continued, even if the advice is not “widely embraced by the medical community.” Id. at 652, 393 N.E.2d at 1011, 419 N.Y.S.2d at 938. In a statement with significant implications for typical infant Doe situations, the court wrote:

[U]ltimately, however, the most significant factor in determining whether a child is being deprived of adequate medical care, and, thus, a neglected child within the meaning of the statute, is whether the parents have provided an acceptable course of medical treatment for their child in light of all the surrounding circumstances. This inquiry cannot be posed in terms of whether the parent has made a ‘right’ or ‘wrong’ decision, for the present state of the practice of medicine, despite its vast advances, very seldom permits such definitive conclusions. Nor can a court assume the role of a surrogate parent and establish as the objective criteria with which to evalutate a parent's decision its own judgment as to the exact method or degree of medical treatment which should be provided, for such standard is fraught with subjectivity. Rather, in our view, the court's inquiry should be whether the parents, once having been made aware of the seriousness of their child's affliction and the possibility of cure if a certain mode of treatment is undertaken, have provided for their child a treatment which is recommended by their physician and which has not been totally rejected by all responsible medical authority.

Id. at 656, 393 N.E.2d at 1014, 419 N.Y.S.2d at 940-41.

55 Two leading articles are: Wald, , State Intervention on Behalf of “Neglected” Children: Standards for Removal of Children From Their Homes, Monitoring the Status of Children in Foster Care and Termination of Parental Rights, 28 Stan. L. Rev. 623 (1976)CrossRefGoogle Scholar; Areen, , Intervention Between Parent and Child: A Reappraisal of the State's Role in Child Neglect and Abuse Cases, 63 Geo. L.J. 887 (1975).Google Scholar

56 As for any claim that the federal law, by placing its infant Doe choices in a definition of medical “neglect,” adequately has defined neglect for the states, consider an instructive riddle traditionally attributed to Abraham Lincoln: “If you call a tail a leg, how many legs has a dog? Five? No; calling a tail a leg don't make it a leg.” J. Bartlett, the Shorter Bartlett's Familiar Quotations 218(d) (1961). Similarly, calling nonaggressive care for infants suffering terribly from incurable conditions “neglect” doesn't make it neglect as that term has long been used and understood. Lawyers and lawmakers above all must be aware of the difference between semantic labelling and the reality those labels purport to describe. See supra note 51.

57 298 Or. 471, 695 P.2d 25 (1985).

58 Id. at 484, 695 P.2d at 34.

59 Id. at 477, 695 P.2d at 30.

60 Id. at 477, 695 P.2d at 29.

61 Id. at 484-92, 695 P.2d at 34-39.

62 42 U.S.C. § 5101-5 (1984).

63 Ariz. Const, art. II, § 8; Wash. Const, art. I, § 7.

64 Alaska Const, art I, § 22.

65 Cal. Const, art I, § 1.

66 Mont. Const, art II, § 10.

67 See, e.g., Colo. Const, art. II, § 25; Mich. Const, art. I, § 23.

68 See, e.g. Ariz. Const, art. II, § 4; Ill. Const, art. I, § 24; Iowa Const, art. I, § 25; Mich. Const, art. II, § 17.

69 Writing of the importance of tradition, history and values in federal due process analysis, Justice Harlan once wrote of the crucial

balance struck by this country, having regard to what history teaches are the traditions from which it developed as well as the traditions from which it broke. That tradition is a living thing. A decision of this Court which radically departs from it could not long survive, while a decision which builds on what has survived is likely to be sound… . The decision of an apparently novel claim must depend on grounds which follow closely on well accepted principles and criteria. The new decision must take its place in relation to what went before and further [cut] a channel for what is to come.

Poe v. Ullman, 367 U.S. 497, 542-44 (1961)(Harlan, J., dissenting)(citation omitted).

70 381 U.S. 479 (1965).

71 Prince v. Massachusetts, 321 U.S. 158, 166 (1944).

72 Thornburgh v. American College of Obstetricians & Gynecologists, 476 U.S. 747, 772 (1986).

73 “This right of personal privacy includes ‘the interest in independence in making certain kinds of important decisions’.” Carey v. Population Serv. Int'l, 431 U.S. 678, 684 (1977)(quoting Whalen v. Roe, 429 U.S. 589, 599-600 (1977)).

74 Id. at 684-85 (quoting Roe v. Wade, 410 U.S. 113, 152-53 (1973)).

75 Thornburgh, 476 U.S. at 772. A new majority of the Court apparently has retreated from such phrasing, speaking more narrowly of interests which are “implicit in the concept of ordered liberty … or deeply rooted in our Nation's history and tradition.” Bowers v. Hardwick, 478 U.S. 186, 191-92 (1986). Yet even under this standard, parental autonomy still should be protected. See infra text accompanying notes 78-80.

76 405 U.S. 645 (1972).

77 Id. at 651 (citation omitted).

78 442 U.S. 584 (1979)(upholding Georgia's informal, non-adversarial procedures permitting parents to commit child to a state mental institution).

79 Id. at 602.

80 Id. at 602-03.

81 See supra text accompanying notes 50-55.

82 Compare Bowers v. Hardwick, 478 U.S. 186, 187 (1986) (majority opinion by White, J.) with Bowers, 478 U.S. at 199, 214 (dissenting opinions by Blackmun, Stevens, JJ.), and Thornburgh v. American College of Obstetricians & Gynecologists, 476 U.S. 747, 785 (1986) (dissenting opinion by White, J.) with Thornburgh, 476 U.S. at 772 (concurring opinion by Stevens, J.); see also supra note 58.

83 Right to Choose v. Byrne, 91 N.J. 287, 300, 450 A.2d 925, 931 (1982).

84 Collins, Looking to the States, Nat'l L.J., Sept. 29, 1986, at S-1 (quoting justice William J. Brennan, Jr.).

85 Schloendorffv. Society of N.Y. Hosp., 211 N.Y. 125, 105 N.E. 92 (1914)(majority opinion by Cardozo, J.).

86 In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976), cert, denied, 429 U.S. 922 (1976).

87 See, e.g., Rasmussen II, 154 Ariz. 207, 741 P.2d 674 (1987); Bouvia v. Superior Court, 179 Cal. App. 3d 1127, 225 Cal. Rptr. 297 (1986); In re Guardianship of Barry, 445 So. 2d 365 (Fla. Dist. Ct. App. 1984); In re Colyer, 99 Wash. 2d 114, 660 P.2d 738 (1983).

88 40 Cal. 3d 143, 219 Cal. Rptr. 387, 707 P.2d 760 (1985).

89 40 Cal. 3d at 160, 219 Cal. Rptr. at 393, 707 P.2d at 771.

90 40 Cal. 3d at 162, 219 Cal. Rptr. at 399, 707 P.2d at 772.

91 In re C.D.M., 627 P.2d 607 (Alaska 1981); In re Moe, 386 Mass. App. Ct. 555, 432 N.E.2d 712 (1982); In re Grady, 85 N.J. 235, 426 A.2d 467 (1981); Rivers v. Katz, 67 N.Y.2d 485, 495 N.E.2d 337, 504 N.Y.S.2d 74 (1986); In re Guardianship of Hayes, 93 Wash. 2d. 228, 608 P.2d 635 (1980).

92 Rasmussen II, 154 Ariz. 207, 741 P.2d 674 (1987).

93 Id. at 212, 741 P.2d at 679.

94 Rasmussen I, 154 Ariz. 200, 205-06, 741 P.2d 667, 668 (1987). The dignity value is recognized in other cases. See, e.g., Rivers v. Katz, 67 N.Y.2d 485, 495 N.E.2d 337, 504 N.Y.S.2d 74 (1986); Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977).

95 Rasmussen II, 154 Ariz, at 221, 741 P.2d at 688.

96 In re Quinlan, 70 N.J. 10, 53, 335 A.2d 647, 670 (1976), cert, denied, 429 U.S. 922 (1976); In re jobes, 108 N.J. 394, 416, 529 A.2d 434, 445 (1987); Barber v. Superior Court, 147 Cal. App. 3d 1006, 1021, 195 Cal. Rptr. 484, 493; see also Newman, , Treatment Refusals for the Critically and Terminally Ill: Proposed Rules for the Family, the Physician, and the State, 3 N.Y.L. Sch. Hum. Rts. Ann. 35 (1985).Google Scholar

97 In re Quinlan, 70 N.J. at 53, 355 A.2d at 670; In re jobes 108 N.J. at 416, 529 A.2d at 445; Barber, 147 Cal. App. 3d at 1021, 195 Cal. Rptr. at 493.

98 Rasmussen II, 154 Ariz, at 221, 741 P.2d at 688; see also In re Conservatorship of Torres, 357 N.W.2d 332 (Minn. 1984).

99 Thornburgh v. American College of Obstetricians & Gynecologists, 476 U.S. 747, 788- 89 (1986)(White,J., dissenting).

100 Rasmussen I, 154 Ariz, at 205-06, 741 P.2d at 668; see also Rivers v. Katz, 67 N.Y.2d 485, 495 N.E.2d 337, 504 N.Y.S.2d 74 (1986); Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977).

101 As I have written previously:

family privacy doctrines reflect the fact that we view family self-governance as a highly prized value in American life. Its protected status under the Due Process Clause evidences concern that majorities not regulate family decisionmaking in its most intimate and sensitive functions. Responding to a severely incapacitating, irreversible illness of a member of the family unit is one of these functions. The impending death, permanent loss of consciousness, or near-complete mental and physical incapacitation of a parent, spouse, or child is one of the most emotionally intense experiences of family life. Dealing with such events requires family members to gather their emotional strength, to seek solace from trusted intimates, and to bring their personal moral, philosophical or religious convictions to bear for guidance and comfort. By necessity, the experience must be shared with the strangers who render care for the ill, but it is one that is otherwise entitled to a respectful and decent privacy.

Newman, supra note 96, at 49-50 (citations omitted).

102 Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 213, 456 N.E.2d 1186, 1188, 469 N.Y.S.2d 63, 65, cert, denied, 464 U.S. 1026 (1983).

103 As Professor Clark has written, “[N]o court or state official and certainly no legislature is able to experience the moral dilemma the parents face in these cases with the profound concern which informs the parents’ decision.” 1 H. Clark, Law of Domestic Relations in the United States 589 (2d. ed. 1987).

104 Rasmussen II, 154 Ariz, at 225, 741 P.2d at 692 (emphasis added). Of course, the roles of legislatures and administrative agencies would, if the constitutional protections apply, be severely circumscribed, since, as Justice Jackson once eloquently wrote:

The very purpose of a Bill of Rights was to withdraw certain subjects from the vicissitudes of political controversy, to place them beyond the reach of majorities and officials and to establish them as legal principles to be applied by the courts … . [F]undamental rights may not be submitted to vote; they depend on the outcome of no elections.

West Virginia State Bd. of Educ. v. Barnette, 319 U.S. 624, 638 (1943).

105 42 U.S.C. § 5102(3)(A) (1984).

106 Cranford, , The Persistent Vegetative State: The Medical Reality (Getting the Facts Straight), 18 Hastings Center Rep. 27, 28 (1988).CrossRefGoogle ScholarPubMed

107 Rasmussen II, 154 Ariz, at 211, 741 P.2d at 678.

108 In re Steinhaus, No.J-86-92 (Minn. Fam. Ct. Sept. 11, 1986)(order denying motions to dissolve a temporary restraining order preventing antibiotics treatment and to order that aggressive-treatment not be required). The court held that the exception for treatment that merely prolonged dying, for example, did not apply since a person may continue in a persistent vegetative state for an indefinite time extending over many years. Neurologist Ronald E. Cranford calls the statutory terminology “misleading” and a “medical oxymoron.” He adds: “I doubt that the various parties responsible for the language of the Amendments had a clear idea of what they intended to mean and which specific neurologic conditions fell under the designation ‘chronically and irreversibly comatose.’ ” Cranford, supra note 106, at 28-29.

109 In the report of the Inspector General of the HHS, six incidents of non-compliance with the statute were cited, anonymously. One involved an infant in the persistent vegetative state; another involved an infant described only as having a brain stem, a condition that excludes the possibility of cognitive existence. Office of Inspector General, supra note 32, app. D, at 3.

110 See Rasmussen II, 154 Ariz. 207, 741 P.2d 674; In re Guardianship of Barry, 445 So. 2d 365 (Fla. Dist. Ct. App. 1984); In re Colyer, 99 Wash. 2d 114, 660 P.2d 738 (1983).

111 President's Comm'n, supra note 29, at 189-92.

112 In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976), cert, denied, 429 U.S. 922 (1976).

113 Id. at 39, 355 A.2d at 663.

114 253 Ga. 439, 321 S.E.2d 716 (1984).

115 Id. at 439, 321 S.E.2d at 718.

116 445 So. 2d 365 (Fla. Dist. Ct. App. 1984).

117 Id. at 376.

118 Id. at 368.

119 Rasmussen II, 154 Ariz. 207, 218, 714 P.2d 674, 685 (1987).

120 42 U.S.C. § 5102(3)(C) (1984).

121 See supra text accompanying notes 12-13.

122 Paris, , Terminating Treatment for Newborns: A Theological Perspective, 10 Law Med. & Health Care 120 (1982).CrossRefGoogle Scholar

123 For a recent case considering these and other factors, see In re Beth Israel Med. Center, 136 Misc. 2d 931, 519 N.Y.S.2d 511 (Sup. Ct. 1987). For a discussion of factors relevant to infant Doe decisions, see infra text accompanying notes 204-19.

124 Barber v. Superior Court, 147 Cal. App. 3d 1006, 1019, 195 Cal. Rptr. 484, 491 (1983); see also Rasmussen II, 154 Ariz, at 222, 741 P.2d at 689 (for patient in vegetative state “any medical treatment… would have provided minimal, if any, benefits;” no medications or even hospitalization required).

125 Paris, When Burdens of Feeding Outweigh Benefits, Hastings Center Rep., Feb. 1986, at 30, 32.

126 42 U.S.C. §5102(3) (1984).

127 For discussion of all factors, see infra text accompanying notes 204-19.

128 For a discussion of treatment problems associated with artificial feeding, see In re Hier, 18 Mass. App. Ct. 200, 201-06, 464 N.E.2d 959, 961-62 (1984).

129 See Rasmussen II, 154 Ariz. 207, 741 P.2d 674 (1987); In re Hamlin, 102 Wash. 2d 810, 689 P.2d 1372 (1984); Severns v. Wilmington Med. Center, 421 A.2d 1134 (Del. 1980). For further compelling examples, see , Paris & Fletcher, , Infant Doe Regulations and the Absolute Requirement to Use Nourishment and Fluids for the Dying Infant, 11 Law Med. & Health Care 210 (1983).CrossRefGoogle Scholar

130 See, e.g., Bouvia v. Superior Court, 179 Cal. App. 3d 1127, 225 Cal. Rptr. 297 (1986); Corbett v. D'Alessandro, 487 So. 2d 368 (Fla. Dist. Ct. App. 1986); Brophy v. New Eng. Sinai Hosp., 398 Mass. 417, 527 N.E.2d 626 (1986); see also In re Caulk, 125 N.H. 226, 480 A.2d 93 (1984)(constitutional right to die recognized, but state interest in preventing prisoner hunger strike overrides).

131 In re Conroy, 98 N.J. 321, 372-74, 486 A.2d 1209, 1236 (1985)(citing Barber v. Superior Court, 147 Cal. App. 3d 1006, 1016, 195 Cal. Rptr. 484, 490 (1983)).

132 See, e.g., In re Peter, 108 N.J. 365, 381-82, 529 A.2d 419, 427-28 (1987); Brophy, 398 Mass. at 439-40, 497 N.E.2d at 68.

133 Supra note 29, at 90, 201.

134 See, e.g., Rhoden, supra note 13, at 1283; Paris & Fletcher, supra note 129, at 210.

135 See, e.g., Lo, & Dornbrand, , Sounding Board: Guiding the Hand that Feeds — Caring for the Demented Elderly, 311 New Eng.J. Med. 402, 403-04 (1984)CrossRefGoogle Scholar; Cranford, supra note 106, at 31.

136 Rasmussen II, 154 Ariz. 207, 741 P.2d 674 (1987).

137 Id. at 212, 741 P.2d at 679.

138 Id. at 217, 741 P.2d at 684; accord In re Hamlin, 102 Wash. 2d 810, 689 P.2d 1372 (1984); Severns v. Wilmington Med. Center, 421 A.2d 1334 (Del. 1980).

139 Battin, The Least Worst Death, Hastings Center Rep., Apr. 1983, at 13, 15.

140 Hack, & Fanaroff, , Changes in the Delivery Room Care of the Extremely Small Infant (<750 g); Effects on Morbidity and Outcome, 314 New Eng. J . Med. 660, 662 (1986)CrossRefGoogle Scholar; Sinclair, , Torrance, , Boyle, , Horwood, , Saigal, & Sackett, , Evaluation of Neonatal Intensive-Care Programs, 305 New Eng. J. Med. 489, 489 (1981)CrossRefGoogle Scholar; Lyons, Physical and Mental Disabilities In Newborns Doubled In 25 Years, N.Y. Times, July 18, 1983, at Al, col. 3.

141 Hack & Fanaroff, supra note 140, at 660.

142 Id. at 662.

143 The researchers reported:

[T]hree mothers of the II survivors born during the period July 1982 to June 1984 did not assume full care of their children. One infant was placed for adoption, one was placed in a long-term care facility, and the third was placed in foster care because of suspected abuse five months after discharge. Seven children (64 percent) were rehospitalized during the first year of life, including one child with chronic lung disease who required a tracheostomy and assisted ventilation for nine months and then multiple hospitalizations until death at two years of age. Neurologic and developmental assessments were performed at a mean corrected age of 8 and 20 months, respectively. [Footnotes omitted.] Four infants had transient hypotonia during their first year. None have cerebral palsy or hydrocephalus. One child is blind.

Id. at 663.

144 Id. at 664.

145 Id. at 663.

146 Committee on the Legal and Ethical Aspects of Health Care for Children, Comments and Recommendations on the “Infant Doe” Proposed Regulations, 11 Law Med. & Health Care 203 (1983).CrossRefGoogle Scholar

147 E. Shelp, Born to Die? Deciding the Fate of Critically Ill Newborns 99 (1986).

148 Jonsen, & Lister, , Newborn Intensive Care: The Ethical Problems, 8 Hastings Center Rep. 15, 16 (1978).CrossRefGoogle Scholar

149 R. Weir, Selective Nontreatment of Handicapped Newborns 149 (1984).

150 45 C.F.R. § 84, app. § 84 C(a)(5)(iv), 48 Fed. Reg. 30,846, 30,852 (1983); see also 49 Fed. Reg. 1654 (daily ed. Jan. 12, 1984). The HHS did not reiterate this suggestion in its interpretive rules for the infant Doe statute. It did acknowledge the general proposition that experimental procedures cannot be compelled by law. 50 Fed. Reg. 14,886 (1985).

151 See Annas, , Death and the Magic Machine: Informed Consent to the Artificial Heart, 9 W. New Eng. L. Rev. 89, 91 (1987).Google Scholar For a classical article on the ethical blindness of enthused medical experimenters, see Beecher, , Ethics and Clinical Research, 274 New Eng. J. Med. 1354 (1966)CrossRefGoogle Scholar; see also Rothman, , Ethics and Human Experimentation: Henry Beecher Revisited, 317 New Eng. J. Med. 1195 (1987)CrossRefGoogle Scholar(review of Beecher article on the twenty-first anniversary of its publication).

152 Nat'l Comm'n For the Protection of Human Subjects of Biomedical and Behavioral Research, Report and Recommendations: Research Involving Children 12-19 (1977)[Hereinafter Research Involving Children].

153 See generally Capron, , Regan, , Reemtsma, , Sheldon, , McCormick, & Gore, , The Subject is Baby Fae, 14 Hastings Center Rep. 8 (1985)CrossRefGoogle Scholar(collection of articles).

154 Bailar, Introduction to Clinical Trials: Issues and Approaches 11 (1983)(“practical constraints ensure that most treatments escape … vigorous evaluation”).

155 This is evident when reading accounts of everyday experiences in neonatal intensive care units. See, e.g., F. Frohock, Special Care (1986); J. Guillemin & L. Holmstrom, Mixed Blessings: Intensive Care For Newborns (1986). The authors of Mixed Blessings suggest that very low birthweight and other newborns whose conditions involve poor chances of clinical success be “clearly designated as experimental patients,” in order “to foster an overt acknowledgment that latent experiments are talcing place, sometimes as erratic forays in clinical problem solving.” J. Guillemin & L. Holstrom, supra, at 274.

156 Jonsen & Lister, supra note 148, at 16.

157 Research Involving Children, supra note 152, at 23-26. The report said further that:

Even such a seemingly simple matter as feeding and hydrating a newborn infant has, without proper research, been subject to faddism and untested innovation. Because premature infants tend to look edematous, for years it was routine practice to give them no food or water for 48 to 72 hours after birth, with a high incidence of brain damage ensuing from an excessive amount of sodium in the blood of the few who survived the drying out procedure. Despite abandonment of such practices and conduct of much research, there still exists no general agreement on when to begin feedings for premature infants and how much of what to give.

Another standard treatment, whose adverse effects continue to be manifested 20 to 30 years later in the form of radiation-induced thyroid cancer, was prophylactic radiation to the neck and chest, used in the 1940's to shrink an infant's thymus. This treatment was administered on the hypothesis that it would prevent the sudden infant death syndrome, with no basis in fact other than the observation that many victims of the syndrome had an enlarged thymus at autopsy… . There are other standard practices whose effects remain matters of speculation. For example, concern is currently being expressed over the practice of isolating premature infants from their parents in intensive care nurseries, based on evidence from research that shows the importance of very early physical contact between the mother and infant for the establishment of parental bonding, and the significantly higher incidence of child abuse of premature infants.

Id. at 24-25.

158 See, e.g., J. Guillemin & L. Holmstrom, supra note 155, at 282 (“[A] major problem in the high-level nursery is the automatic, even routine nature of aggressive intervention.” It is overtreating newborns, rather than failing to treat, that is the “more common jeopardy.”); Duff, , Counseling Families and Deciding Care of Severely Defective Children: A Way of Coping with ‘Medical Vietnam’, 67 Pediatrics 315, 316 (1981).Google Scholar

159 Professor Joseph Goldstein begins an article with this quotation: “Of all tyrannies a tyranny sincerely exercised for the good of its victims may be the most oppressive … . [T]hose who torment us for our own good will torment us without end for they do so with the approval of their own conscience.” Goldstein, , Medical Care For The Child At Risk: On State Supervention Of Parental Autonomy, 86 Yale L.J. 645, 645 (1977CrossRefGoogle Scholar)(quoting Lewis, , The Humanitarian Theory of Punishment, 6 Res Judicatae 224, 228 (1952)).Google Scholar

160 See supra notes 86-104 and accompanying text.

161 R. WEIR, supra note 149, at 237 (citations omitted). For a description of a number of other devastating birth defects, see Rhoden, supra note 13, at 1287-94.

162 Engelhart, , Euthanasia and Children: The Injury of Continued Existence, 83 J. Pediatrics 170 (1973).CrossRefGoogle Scholar

163 Two Harvard researchers report that “[n]ewborns are frequently not given analgesic or anesthetic agents during invasive procedures, including surgery. Despite recommendations to the contrary in textbooks on pediatric anesthesiology, the clinical practice of inducing minimal or no anesthesia in newborns, particularly if they are premature, is widespread.” Anand, & Hickey, , Pain and Its Effects in the Human Neonate and Fetus, 317 New Eng. J . Med. 1321 (1987).CrossRefGoogle Scholar Other procedures are performed routinely without consideration of pain. Fletcher, , Pain in the Neonate, 317 New Eng. J. Med. 1347 (1987).CrossRefGoogle Scholar

164 President's Comm'n, supra note 29, at 200 (emphasis added).

165 Id. at 200 n. 17.

166 Jonsen & Lister, supra note 148, at 16 (Iatrogenicity is an abnormal condition induced in a patient by the effects of treatment by a doctor).

167 Loewy, , Treatment Decisions in the Mentally Impaired, 317 New Eng. J. Med. 1465, 1468 (1987).CrossRefGoogle Scholar

168 See F. Frohock, supra note 155 (describing cases of long term treatment in neonatal intensive care units); J. Guillemin & L. Holmstrom, supra note 155, at 241-42; see also Fisher, & Stevenson, , The Consequences of Uncertainty: An Empirical Approach to Medical Decision Making in Neonatal Intensive Care, 258 J. A.M.A. 1929 (1987)Google Scholar(“In any setting other than an intensive care unit, a daily routine that involved restraining neonates in bed, placing plastic tubes … into various body orifices, and pricking the feet with needles … would be considered torture.”).

169 Stinson & Stinson, On the Death of a Baby, Atlantic, July 1979, at 64, 65; see R. Stinson & P. Stinson, the Long Dying of Baby Andrew (1983).

170 See, e.g., Rasmussen II, 154 Ariz. 207, 741 P.2d 674 (1987); John F. Kennedy Memorial Hosp., Inc. v. Bludworth, 452 So. 2d 921 (Fla. 1984); Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977). The New Jersey Supreme Court observed that a balancing of factors reflects “a basic aspect of right-to-die cases.” In re jobes, 108 N.J. 394, 436 n.7, 529 A.2d 434, 455 n.7 (1987).

171 The dearth of cases concerning newborns is itself significant. As Professor Clark observes:

[N]otwithstanding the extensive publicity given to some of the cases in which treatment for newborns has been withheld, the existing legal sanctions are seldom invoked. When the cases do come to court, it is usually in the context of a proceeding to seek court approval for the action or nonaction which the parents and perhaps the physicians wish to adopt. One must conclude from this that the state officials responsible for civil or criminal proceedings recognize that the parents’ decision to withhold treatment is morally justified in some circumstances, a recognition which is shared by at least some commentators. If the treatment involves intrusive, painful or very uncomfortable procedures for the child without countervailing benefits, or substantial risk of death or a further impairment of physical or mental capacity, the parental refusal to authorize it seems justified.

H. Clark, supra note 103, at 588 (citations omitted).

172 In re Guardianship of Barry, 445 So. 2d 365 (Fla. Dist. Ct. App. 1984); In re L.H.R., 253 Ga. 439, 321 S.E.2d 716 (1984); In re P.V.W., 424 So. 2d 1015 (La. 1982).

173 Weber v. Stony Brook Hosp., 95 A.D.2d 587, 467 N.Y.S.2d 685, aff'd on other grounds 60 N.Y.2d 208 (1983). The Court of Appeals, in affirming on other grounds, did term the treatment course “responsibly decided upon “ by the parents. Weber, 60 N.Y.2d at 210.

174 67 N.Y.2d 485, 495 N.E.2d 337, 504 N.Y.S.2d 74 (1986).

175 Id. at 497, 495 N.E.2d at 344, 504 N.Y.S.2d at 81.

176 Feldman, & Murray, , State Legislation and the Handicapped Newborn: A Moral and Political Dilemma, 12 Law Med. & Health Care 156, 162 (1984)CrossRefGoogle Scholar; accord Jonsen, , Phibbs, , Tooley, & Garland, , Critical Issues in Newborn Intensive Care: A Conference Report and Proposal, 55 Pediatrics 756 (1975).Google Scholar

177 American Med. Ass'n, Current Opinions of the Judicial Council § 2.14 (1984). Dr. A. G. M. Campbell, writing of the burdens justifying nonaggressive care, has observed:

[M]any pediatricians would probably agree that the most important medical criterion is severe abnormality, disease, or damage to the central nervous system, especially the brain, which will have devastating consequences for development… . Specific examples include infants with hydranencephaly, severe neural tube defects, gross hydrocephalus if complicated by infection, and chromosomal disorders such as trisomy 13 and 18. Infants with extensive and fully documented … brain damage after asphyxia and hemorrhage might also be included.

Campbell, , Which Infants Should Not Receive Intensive Care?, 57 Arch, of Dis. in Childhood 569-71 (1982)CrossRefGoogle ScholarPubMed, quoted in Young, , Caring for Disabled Infants, 13 Hastings Center Rep. 15 (1983).CrossRefGoogle Scholar Young notes that there is “substantial agreement with Campbell's position on this issue, not only in Britain and in Sweden, but here in the United States as well.” Young, supra, at 16.

178 Research Involving Children, supra note 152, at 135.

179 Id. at 123.

180 March of Dimes Birth Defects Found., Annual Report 4 (1986).

181 See, e.g., President's Comm'n, supra note 29, at 202 (spina bifida “causes physical and/or mental impairments that range widely in severity and frequently involve many organ systems.”) Doctors at the Stanford University School of Medicine argue that the complexity and uncertainty of diagnosis and prognosis for the premature infant makes the federal standard an unworkable one for all infants whose conditions are not easily categorized. Stevenson, Ariagno, Kutner, Raffin & Young, supra note 43, at 1909.

182 See, e.g., F. Frohock, supra note 155 (discussing accounts of infant care).

183 The Parents Doe, Nation, Feb. 25, 1984, at 213 (emphasis added)(parent author requested anonymity).

184 Weiner v. United States, 357 U.S. 349, 352 (1958).

185 Kopelman, Irons & Kopelman, supra note 27, at 682-83; Stevenson, Ariagno, Kutner, Raffin & Young, supra note 43, at 1911.

186 50 Fed. Reg. 14,880 (daily ed. Apr. 15, 1985).

187 President's Comm'N, supra note 29, at 181.

188 Id. at 218-19.

189 H. Clark, supra note 103, at 588 (citations omitted).

190 United States v. University Hosp., 729 F.2d 144, 149 (2d Cir. 1984)(quoting district court opinion).

191 American Med. Ass'n, supra note 177, at § 2.14.

192 Statement of Council on Ethical and Judicial Affairs of the A.M.A., Withholding or Withdrawing Life Prolonging Medical Treatment (1986).

193 Paris, supra note 122, at 124 (describing the Vatican's 1980 Declaration on Euthanasia).

194 Shatten, & Chabon, , Decision Making and the Right to Refuse Lifesaving Treatment for Defective Newborns, 3 J. Legal Med. 59, 74 (1982).CrossRefGoogle Scholar

195 Veatch, , Limits of Guardian Treatment Refusal: A Reasonableness Standard, 9 Am. J.L. & Med. 427, 435-36.Google Scholar

196 Id. at 442, 466.

197 See infra text accompanying notes 204-19.

198 President's Comm'n, supra note 29, at 218-19.

199 See McNeil, , Weichselbaum, & Paulker, , Speech and Survival: Tradeoffs Between Quality and Quantity of Life in Laryngeal Cancer, 305 New Eng. J. Med. 982 (1981)CrossRefGoogle Scholar; Lane v. Candura, 6 Mass. App. Ct. 377, 376 N.E.2d 1232 (1978).

200 The official records in this case, universally acknowledged as a focal point in the legislative debate on the federal statute, are sealed. In re Infant Doe, No. GU 8204-004A (Ind. Ct. App. Apr. 12, 1982), writ of mandamus dismissed sub nom. State ex rel. Infant Doe v. Baker, No. 482 § 140 (Ind. Sup. Ct. May 27, 1982), cert, denied, 464 U.S. 961 (1983). Various informal accounts of it appear in articles and books. See, e.g., J. Lyons, supra note 43, at 21-39 (“[N]o single event in years had so galvanized … reformers as the death of Baby Doe.”).

As Professor Jay Katz has pointed out, legislative proposals spurred by one tragic event “are often insufficiently considered,” creating more problems than they solve. J. Katz & A. Capron, Catastrophic Diseases: Who Decides what? 130, 159 (1982).

201 The bargaining was among disability groups, right-to-life advocates, and medical groups. Kerr, Negotiating the Compromises, Hastings Center Rep., June 1985, at 6. For an excellent recap of the gains and losses of the organized groups and the unorganized parents, see Lantos, , Baby Doe Five Years Later: Implications for Child Health, 317 New Eng. J. Med. 444 (1987)CrossRefGoogle Scholar(unorganized parents “were not a great source of concern among politicans”).

202 See R. Stinson & P. Stinson, supra note 169; The Parents Doe, supra note 183, at 213.

News articles and editorials also reported parental views and concerns: Cruelty and Baby Jane, N.Y. Times, Nov. 1, 1983, (Editorial), at 26; Chambers, Advocates for the Right to Life, N.Y. Times, Dec. 16, 1984, (Magazine), at 94; Big Brothers and Baby Doe, N.Y. Times, July 28, 1984, (Editorial), at 22, col. 1.; CBS Evening News with Dan Rather, supra note 1.

203 See infra text accompanying notes 204-14. A statutory model from another child-protective context is the Michigan child custody law. It sets forth the basic principle that custody shall be determined according to the “best interests” of the child and lists nine particular factors important to the ultimate judgment on best interest. The factors listed are not exhaustive; decisionmakers are free to consider matters not listed if they bear on the child's interest. 18 Mich. Stat. Ann. § 25.312(3) (1984).

204 President's Comm'N, supra note 29, at 218.

205 See, e.g., Silverman, , Mismatched Attitudes about Neonatal Death, 11 Hastings Center Rep. 12 (1981)CrossRefGoogle Scholar; Keyserlingk, , Non-Treatment in the Best Interests of the Child: A Case Commentary of Couture-Jacquet v. Montreal Children's Hospital, 32 Mcgill L.J. 413, 422 (1987)Google Scholar; Frader, , Difficulties in Providing Intensive Care, 64 Pediatrics 10 (1979).Google Scholar

As theologian John J. Paris has written:

[I]t is the evolution of technology to the ultimate value that has created the problems we see today and that has distanced us so far from the kind of wisdom every caring grandmother in this country would know how to apply to these questions.

Paris, supra note 122, at 122.

206 Neonatal intensive care units (NICU) rely heavily on young physicians who must be trained; training needs are “potentially at odds with the well-being of patients.” J. Guillemin & L. Holmstrom, supra note 155, at 278. Research, status, hospital reputation and financial returns are all concerns of NICU life likely to increase resistance to needed improvements. Id. at 185-87. Physicians “have a long history of using the sick to learn about diseases, to transmit knowledge and to make a living … .” Duff, supra note 158, at 318 (emphasis in orignial). “The need for observation and data may push a clinician, even unconsciously, to extend a course of care beyond reasonable limits of benefit to the patient.” Jonsen, Phibbs, Tooley & Garland, supra note 176, at 763.

207 Although doctors ordinarily can reject patients who ask them to act contrary to their own morality, letting such patients seek out another doctor, this is not possible in the typical infant Doe situation, where the infant is in the effective custody of the hospital nursery. Parents can not move very sick infants or go “doctor shopping” when infants are in intensive care units.

208 See President's Comm'n, supra note 29, at 211; H. Clark, supra note 103, at 588.

209 Veatch, supra note 195, at 436-37. An example given by Veatch illustrates the point:

(Justification for guardian treatment refusal on behalf of an incompetent patient should focus almost exclusively on the burden to the patient; however, there are exceptional situations where the door must be opened to consider the burdens to others. It would be unrealistic not to recognize such exceptions.

Consider the situation of a family with moderate means consisting of husband, wife, and three children including an infant with a severe immune deficiency. The infant is not expected to live, but the physician advises that if the infant were flown immediately across the country to an East Coast research facility, there would be about one chance in one thousand that the baby would survive. The treatment would not be painful to the child. The cost of the transportation and care would be approximately $100,000. The family has net worth including equity in their house of $60,000, but they could borrow the remainder. Most reasonable people would say that the parents are under no moral obligation to borrow the money to provide the infant this slim chance of survival; yet, if only benefit to the patient were considered, they ought to be required to do so.

Id. at 436.

210 Egan, Rebuffed by Oregon, Patients Take Their Life-or-Death Cases to Public, N.Y. Times, May 1, 1988, at 26, col. 1 (state legislature reallocates public funds from transplant operations to prenatal care).

211 Rhoden, supra note 13, at 1322.

212 See Glick, , Guyer, , Burr, & Gorbach, , Pediatric Nursing Homes: Implications of the Massachusetts Experience for Residential Care of Multiply Handicapped Children, 309 New Eng. J. Med. 640, 643 (1983)CrossRefGoogle Scholar; see also Society for Good Will v. Cuomo, 572 F. Supp. 1300, 1337 (E.D.N.Y. 1983); Mincer, Day Care for Sick Children, N.Y. Times, July 2, 1987, at C9, col. 1 (reporting opening of nation's only nonprofit day care center for children with special needs).

213 The court's findings were sobering:

[J]udge Sanders said today that the state had violated the constitutional rights of the mentally retarded youths sent to state schools “by failing to provide constitutionally adequate medical care, constitutionally adequate safety, constitutionally adequate freedom from undue restraint, and constitutionally adequate habilitation.” Judge Sanders spelled out in harrowing detail some cases of inadequate care and neglect. He described residents lying in their own feces and urine, cases of sexual abuse of residents and residents being beaten by staff members.

Appelborne, Texas Held in Contempt Over Treatment of Mentally Retarded, N.Y. Times, Aug. 14, 1987, at A10, col. 1.

214 Glick, Guyer, Burr & Gorbach, supra note 212, at 642.

215 Id. This is one of the criteria for placement in the system.

216 Id. at 643.

217 Id. at 644.

218 Id.

219 In the Massachusetts children's nursing homes, many children had no or few visits from their families. Id. See Gross, , Cox, , Tatgrek, , Pollay, & Barnes, , Early Management and Decision Making for the Treatment of Myelomeningocele, 72 PEDIATRICS 450 (1983)Google Scholar; Shaw, , QL Revisited, 18 Hastings Center Rep. 10 (1988)CrossRefGoogle Scholar(societal resources affect medical outcomes). For cases in which parents challenged conditions in institutions, see Society for Good Will v. Cuomo, 572 F. Supp. 1300 (E.D.N.Y. 1983), and cases cited in Note, Parental Rights and the Habilitation Decision for Mentally Retarded Children, 94 Yale L.J. 1715, 1737 n.120 (1985).CrossRefGoogle Scholar The nation's poor standard of care for the mentally retarded is recounted in City of Cleburne v. Cleburne Living Center, 473 U.S. 432 (1985).

220 The abortion context offers many examples of non-neutral conditions and burdensome procedures. See, e.g., Akron v. Akron Center for Reproductive Health, 462 U.S. 416 (1983)(ordinance struck down). For a discussion of the chilling effect of procedures in the area of treatment refusals, see In re Colyer, 99 Wash. 2d 114, 660 P.2d 738 (1983); In re jobes, 108 N.J. 394, 423, 529 A.2d 434, 449 (1987).

221 See HHS, Model Guidelines for Health Care Providers to Establish Infant Care Review Committees, 50 Fed. Reg. 14,893 (daily ed. Apr. 15, 1985).

222 Id. at 14,894, 14,897.

223 For more detailed discussion, see Levine, Questions and (Some Very Tentative) Answers About Hospital Ethics Committees, Hastings Center Rep., June 1984, at 9; Veatch, The Ethics of Institutional Ethics Committees, in Institutional Ethics Committees and Health Care Decisionmaking (1984); McCormack, , Ethics Committees: Promise or Peril?, 12 Law Med. & Health Care 150 (1984).CrossRefGoogle Scholar

224 See, e.g., Fost, , Baby Doe: Problems and Solutions, 1984 ARIZ. ST. L.J. 637.Google Scholar

225 For further discussion of ethics committees, see Newman, supra note 96, at 80-81; R. Weir, supra note 149, at 263-66.

226 70 N.J. 10, 355 A.2d 647 (1976), cert, denied, 429 U.S. 922 (1976).

227 Id. at 50, 355 A.2d at 669.

228 60 N.Y.2d 208, 456 N.E.2d 1186, 469 N.Y.S.2d 63 (1983).

229 Id. at 213, 456 N.E.2d at 1188, 469 N.Y.S.2d at 65.

230 See In re Colyer, 99 Wash. 2d 114, 660 P.2d 738 (1983); John F. Kennedy Memorial Hosp., Inc. v. Bludworth, 452 So. 2d 921 (Fla. 1984).

231 45 So. 2d 365 (Fla. Dist. Ct. App. 1984).

232 Id. at 371.

233 Id.

234 253 Ga. 439, 446, 321 S.E.2d 716, 723 (1984).

235 Newman, supra note 96, at 76.

236 Stone, , Judges as Medical Decision Makers: Is the Cure Worse Than the Disease?, 33 CLEV. ST. L. REV. 579 (1984-85).Google Scholar

237 Dr. Stone writes:

When doctors see the threatening shadows of the law, they forget that they are doctors with personal responsibility; they act to minimize their own risks; they often call in their lawyers and do what they are told; they often behave very much like bureaucrats. Indeed there is a high correlation between the increasing judicial and legislative intervention in medicine and the increasing bureaucratization of medical care. For every legal intervention another committee is created. Thus, by casting what seem like threatening shadows, the courts have influence far beyond their actual decisions on medical practice. Juridicogenic cures contribute to the bureaucratization of medical care.

Id. at 583.

238 See supra note 158.

239 On physician dominance of parents, see Malone, , Medical Authority and Infanticide, 1 J. Law & Health 77, 96-100 (1985-86)Google Scholar; see generally J. Katz, the Silent World of Doctor and Patient (1984).