1 A fetus in a human being refers to the products of conception from the beginning of the third month of pregnancy until birth. The term viability is medically applied to the human fetus from about the 28th week of gestation at which stage it may be capable of survival. Concise Oxford Medical Dictionary 235 (Corgi ed. 1982).

2 The constitutional underpinning of Roe v. Wade, 410 U.S. 113 (1973), was that the right to privacy includes freedom of personal choice in certain matters of marriage and family. See also Harris v. McRae, 448 U.S. 297 (1980). Familial or parental choice in effectuating the constitutional right to privacy is, however, only one interest to be balanced among others; from the moment of viability, the principal interest is that of the infant. It is the thesis of this essay that this balancing of interests is not fundamentally altered by either the fact of the birth of a severely handicapped infant or the long-term worth of the life to be protected. Although the Supreme Court in Roe v. Wade, 410 U.S. at 156-58, held that a fetus was not a person under the Fourteenth Amendment, it indicated that a newborn, and by implication a handicapped newborn, is a person deserving of constitutional protection. See Commonwealth v. Edelin, 371 Mass. 497, 359 N.E.2d 4 (1976) (conviction of a physician for manslaughter of an aborted but arguably “live” fetus reversed because only a fetus “born alive outside its mother“ can be a “person“). For a discussion of the Edelin case see P. Ramsey, Ethics at the Edge of Life: Medical and Legal Intersections 94-141 (1978).

3 See infra notes 49-53 and accompanying text.

4 See British Medical Association, The Handbook of Medical Ethics 29 (1980) (amended by the BMA in 1983, 286 British Medical Journal 593, (1983); H. Kuhse P. Singer, Should the Baby Live? The Problem of Handicapped Infants (1985); Davis,Ethical Issues in Neonatal Care, in Parent and Infant Attachment in Premature Babies (J. Davis, M. Richard C. Robertson, eds. 1984); Englehardt, Ethical Issues in Aiding the Death of Young Children, in Killing and Letting Die (B. Steinbeck, ed. 1980); T. Baldwin, Life and Death in Newborn Special Care Units (March 1982) (available at Connecticut State Dept. of Health Services); Campbell, Duff, , Deciding the Care of Severely Malformed or Dying Infants, 5 J. Med. Ethics 65 (1979);Google ScholarPubMed Duff, Campbell, , Moral and Ethical Dilemmas in the Special-Care Nursery, 289 New Eng. J. Med. 890 (1973);Google Scholar Englehardt, , Euthanasia and Children; The Injury of Continued Existence, 83 J. Pediatrics, 170 (1973);Google Scholar Fletcher, , Abortion, Euthanasia and Care of Defective Newborns, 292 New Eng. J. Medicine 75 (1975);Google Scholar Goldstein, , Medical Care for the Child at Risk: On State Supervention of Parental Autonomy, 86 Yale L.J. 645, 651-61 (1977);Google Scholar Goldstein, , Not for the Law to Approve or Disapprove—A Comment on Professor Mnookin's Paper, 1984 Ariz. Stat. L.J. 685;Google Scholar Harris, , Ethical Problems in the Management of Some Severely Handicapped Children, 7 J. Med. Ethics 117 (1981);Google Scholar Kuhse, , A Modern Myth that Letting Die is Not the Intentional Carnation of Death: Some Reflections on the Trial and Acquittal of Dr. Leonard Arthur, 1 J. of Applied Philosophy 21 (1984);Google ScholarPubMed Lorber, , Ethical Problems in the Management of Myelomeningocele and Hydrocephalus, 10 J. Roy'l College of Physicians of London 47 (1975);Google Scholar McCormick, , To Save or Let Die—The Dilemma of Modern Medicine, 229 J.A.M.A. 172 (1974);Google ScholarPubMed Myer, , Protecting the Best Interests of the Child: Is the State a Necessary Blunt Instrument, 1984 Arizona Stat. L.J. 627;Google Scholar Smith, , Quality of Life, Sanctity of Creation: Palliative or Apotheosis, 63 Neb. L. Rev. 709(1984);Google ScholarPubMed Tooley, , Abortion and Infanticide, 2 Philosophy Pub. Aff. 37 (1972);Google Scholar Williams, , Down's Syndrome and the Duty to Preserve Life, 131 New L.J. 1020(1981);Google Scholar Williams, , Down's Syndrome and the Doctor's Responsibility, 133 New L.J. 1040 (1981);Google Scholar Comment, , Baby Doe Decisions: Modern Society's Sins of Omission, 63 Neb. L. Rev. 888 (1984).Google Scholar Other commentators have argued for careful control over nontreatment decisions. See Burt, Authorizing Death for Anomalous Newhorns, in Gentics and the Law 435 (A., Milunsky G., Annas, eds. 1976);Google Scholar Freund, , Mongoloids and “Mercy Killing,” in Ethics in Medicine: Historical Perspectives and Contemporary Concerns 536 (S.J., Raiser, A.J., Dyck J., Curran, eds. 1977);Google Scholar P. Ramsey, supra note 2, at 189-227; A. Shearer, Everybody's Ethics: What Future for Handicapped Babies? (1984); Annas, , “A Wonderful Case and an Irrational Tragedy“: The Phillip Becker Case Continues, 12 Hast. Cen. Rpt. 25 (Feb. 1982);Google Scholar Brant, McNulty, , Treating Defective Newborns: The Ethical Dilemma, 10 Hum. Rts. 34 (1982);Google Scholar Bridge, Bridge, , The Brief Life and Death of Christopher Bridge, 11 Hast. Cen. Rpt. 17 (Dec. 1981);Google Scholar Coburn, , Morality and the Defective Newborn, 5 J. Med. and Philosophy 340 (1980);Google Scholar Ellis, , Letting Defective Babies Die: Who Decides? 7 Am. J.L. Med. 393 (1982);Google ScholarPubMed Fost, , Baby Doe: Problems and Solutions, 1984 Ariz. Stat. L.J. 637;Google Scholar Gostin, , Court of Appeal's Authorization of Operation on Infant with Down Syndrome, The Lancet 467 (August 29, 1981);Google Scholar Heymann, Holtz, , The Severely Defective Newborn: The Dilemma and Decision Process, 23 Pub. Policy 381 (1975);Google Scholar Johnson, , Selective Non-Treatment and Spina Biflda: A Case Study in Ethical Theory and Application, 3 Bioethics Quart. 91 (1981);Google Scholar Johnson, , Selective Non-Treatment oj Defective Newborns; An Ethical Analysis, 47 Linacre Quart. 39 (1980);Google Scholar Longio, , Withholding Treatment from Defective Newborns: Who Decides and on What Criteria1? 31 U. Kan. L. Rev. 377 (1983);Google Scholar Morgan, , Quality of Life and the Malformed Child, 27 Oxford Medical School Gazette 77 (1975);Google Scholar Robertson, , Involuntary Euthanasia of Defective Newborns: A Legal Analysis, 27 Stan. L. Rev. 213, 263-68 (1975),Google Scholar Robertson, Fost, , Passive Euthanasia of Defective Newborn Infants: Legal Considerations, 88 J. Pediatrics 883 (1976);Google Scholar Shapiro, , Medical Treatment of Defective Newborns: An Answer to the “Baby Doe” Dilemma, 20 Harv. J. Legis. 137 (1983);Google Scholar Note, Birth Defective Infants: A Standard for Non-Treatment Decisions, 30 Stan. L. Rev. 599 (1978).

5 In re the Treatment and Care of Infant Doe, No. GU8204-004A (Ind. Cir. Ct., Apr. 12, 1982), cert, denied sub nom., Infant Doe v. Bloomington Hospital, 464 U.S. 961, (1983) [hereinafter cited as Infant Doe.﹜ See infra text accompanying notes 78-79.

6 A tracheo-oesophageol fistula is a congenital abnormality involving an abnormal communication between the windpipe and the gullet which prevents normal digestion of food. Concise Oxford Medical Dictionary 239 (Corgi ed. 1982).

7 The Child Abuse Prevention and Treatment Act Amendments of 1984, Pub. L. No. 98-457, 98 Stat. 1749 (codified as amended at 42 U.S.C. §§ 5101-05 (1985)). [hereinafter cited as Child Abuse Amendments of 1984]; The Department of Health and Human Services Final Rule, 50 Fed. Reg. 14,878 (1985) (to be codified at 45 C.F.R. Part 1340) [hereinafter cited as the Child Abuse Rules].

8 See infra notes 100-129 and accompanying text.

9 As to the full reasons, see Legislative History, Child Abuse Amendments of 1984, P.L. 98-457,4 U.S. Code Cong. Ad. News 2918, 2925-27 (1985) [hereinafter cited as “Legislative History.“].

10 The frequency of decisions to selectively withhold treatment from handicapped or malformed neonates has never been accurately discovered, probably because of the private way in which such decisions are often made. Dr. Robert E. Cooke estimated that thousands of decisions of this kind are taken each year in the United States. Medical Ethics: The Right to Survival 1974: Hearing on the Examination of the Moral and Ethical Problems Faced with the Agonizing Decision of Life and Death Before the Subcommittee on Health of the Senate Committee on Labor and Public Welfare, 93d Cong., 2d Sess. 26 (1974). It has also been reported that from January 1, 1970 to June 30, 1972, 14% of the deaths in the intensive care nursery of the Yale New Haven Hospital resulted from non-treatment decisions. Duff Campbell, supra note 4. Professor John Lorber has reported the widespread use of non-treatment for over a decade. He has presented a breakdown of 848 infants born with a meningomyelocoele during 1958- 68. These infants were treated with the best methods available at the time of their birth and 50% were still alive in 1972, 81.4% of which were severely handicapped. Because of what Professor Lorber considered a poor prognosis, he developed a set of criteria for nontreatment, with selected patients receiving only normal nursing care and sedation from birth onwards. Lorber, supra note 4; Lorber, , Early Results of Selective Treatment of Myelomeningocele: To Treat or Not to Treat, 53 Pediatrics 307 (1974).Google Scholar

For critical discussions of criteria for treatment selection see Black, , Selective Treatment of Infants with Myelomeningocele, 5 Neurosurgery 334 (1979);Google Scholar Reid, , Spina Bifida: The Fate of the Untreated—The Logical Outcome of Guidelines, 7 Hast. Cen. Rpt. 16 (1977);Google Scholar Veatch, , The Technical Criteria Fallacy, 7 Hast. Cen. Rpt. 15 (1977).Google Scholar

Individual instances of selective non-treatment of handicapped neonates have also been reported in the medical literature and have sometimes been the subject of judicial decisions. Freund, , supra note 4Google Scholar (Down's Syndrome with duodenal atresia); Gustafson, , Mongolism, Parental Desires and the Right to Life, 16 Perspect. Biol. Med. 529 (1973)Google Scholar (Johns Hopkin's case—Down's Syndrome with duodenal atresia), Maine Medical Center v. Houle, No. 74-145 (Super. Ct. Cumberland Co., Me., Feb. 14, 1974) (multiple malformities, brain damage and tracheo-oesophageal fistula); In re Obernauer (Juv. Dom. Rel. Ct. Morris County, N.J., Dec. 22, 1970) (Down's syndrome with duodenal atresia); Infant Doe, supra note 5; In re Phillip B., 92 Cal. App. 3,796, 156 Cal. Rptr. 48 (1979), cert, denied sub nom. 445 U.S. 949 (1980). Three cases of a similar kind have recently been reported in Europe. In re B. (A Minor) 1 WLR 1421 (1981) (Down's Syndrome with duodenal atresia); R. v. Arthur (Leicester Crown Ct., Nov. 5, 1981) (physician acquitted of attempted murder of Down's Syndrome infant born with duodenal atresia where sedation was administered and no nourishment given); Dr. Willi Appel and Dr. Eva Maria Klotz (Crim. Ct., Munich, Landesgericht I. Schwargericht, ks 122 Js 4226/81, 24 March 1982) (physician convicted of second degree manslaughter and sentenced to 2-1/2 years imprisonment for giving lethal injection to infant born with massively deformed head and who was not expected to live). See Kaufman, , Assessment of Euthanasia with Regard to Babies under Ethics and Criminal Law, 14 Jurestenzeitung 481 (July 16, 1982).Google Scholar For further discussions of frequency and visability of decisions not to treat see Ellis, supra note 4, at 398-401; Brown, and Truitt, , Euthanasia and the Right to Die, 3 Ohio N.U.L. Rev. 615, 634 (1976).Google Scholar

11 D. Crane, The Sanctity of Social Life: Physicians’ Treatment of Critically Iii Patients 35-87 (1975) (among the most important influences in non-treatment decisions were impact on family, potential usefulness to society or family and mother's attitudes). Todres, , Krane, , Howell, Shannon, , Pediatricians’ Attitudes Affecting Decision-Making in Defective Newborns, 60 Pediatrics 197 (1977)Google Scholar (46% felt Down's Syndrome infant with duodenal atresia should be operated upon); McKilligan Diller, Severe Congenital Abnormality in the Fetus and Newborn: Physician Attitude to Management (1975) (paper presented at the Annual Meeting of the Canadian Pediatric Association), reported in Affleck, , Physicians’ Attitudes Toward Discretionary Medical Treatment of Down's Syndrome Infants, 18 Mental Retardation 79 (April 1980)Google Scholar (in an otherwise normal Down's infant, 17% would want parents to do “everything humanly possible” to preserve life); Shaw, , Randolph, Manard, , Ethical Issues in Pediatric Surgery: A National Survey of Pediatricians and Pediatric Surgeons, 60 Pediatrics 588 (1977)Google Scholar (one third of sample would not “acquiesce” in parental decision not to surgically correct duodenal atresia); Treating the Defective Newborn: A Survey of Physician's Attitudes, 6 Hast. Cen. Rpt. 2 (Apr. 1976) (more than half sampled would not treat trisomy 18 newborns). See ato Silverman, , The Child as a Social Object: Down's Syndrome Children in a Paedriatric Cardiology Clinic, 3 Sociology of Health and Illness 254 (1981)Google Scholar (excellent paper showing the ways in which physicians treat children with Down's Syndrome differently from other children with heart problems); Pilkington, , Teaching Medical Students about Mental Handicap, 19 Devel. Med. Child Neurol. 652-58 (1977)Google Scholar (medical school teaching was not thought to facilitate appropriate knowledge of mental retardation).

12 See generally, D., Crane, supra note 11.Google Scholar

13 See, e.g., Duff, , Counselling Families and Deciding Care of Severely Defective Children: A Way of Coping with ‘Medical Vietnam,’ 67 Pediatrics 315, 318 (1981);Google Scholar Williams, , Down's Syndrome and the Duty to Preserve Life, 131 New L.J. 1020 (1981).Google Scholar

14 For discussions on the hardships parents face following the birth of a severely handicapped neonate see R. Darling, Families Against Society: A Study of Reactions to Children with Birth Defects 45-79(1979); Duff, Campbell, , On Deciding the Care of Severely Handicapped or Dying Persons: With Particular Reference to Infants, 57 Pediatrics 487, 488 (1976);Google ScholarPubMed Fletcher, , Attitudes Toward Defective Newborns, 2 Hast. Cen. Studs. 21 (1974);Google Scholar Kennell, Klaus, , Parental Reactions to the Birth of a Malformed Infant, 27 Oxford Med. School Gazette, 80 (1975);Google Scholar Shaw, , Dilemmas of “Informed Consent” in Children, 289 New Eng. J. Med. 885, 886-87 (1973).Google Scholar For discussions of the effects on other children in the family see Bentovim, , Emotional Disturbances of Handicapped Pre-School Children and Their Families—Attitudes to the Child, 3 Brit. Med. J. 579 (1972);Google Scholar Cohen, , The Impact of the Handicapped Child on the Family, 43 Social Casework 137 (1962);Google Scholar Gath, , The Effect of a Malformed Child Upon Other Children, 27 Oxford Med. School Gazette 81 (1975).Google Scholar

15 There are arguments, both moral and legal, that human life must attain characteristics more complex and meaningful than simple existence before it should attract the attribute of “personhood.” See Kuhse, , supra note 4;Google Scholar Singer, , supra note 4.Google Scholar Fletcher's indicators of personhood include cortical functioning and minimal intelligence, a sense of time, concern for others, and idiosyncracy. Fletcher, , Indicators of Humanhood: A Tentative Profile of Man, 2 Hast. Cen. Rpt. 1 (Nov. 1972);Google Scholar Fletcher, , Four Indicators of Humanhood—The Enquiry Matures, 4 Hast. Cen. Rpt. 4 (Dec. 1974).Google Scholar Nelson refers to socialness, capacity to experience limitation and freedom, and religiousity or intentionality. J. Nelson, Human Medicine 19-24(1973). Tooley focuses on self-consciousness, Tooley, , Abortion and Infanticide, in Moral Problems in Medicine 297–317Google Scholar (S. Gorovitz ed. 1976); Tooley, , Abortion and Infanticide, 2 Phil. Pub. Affirs 37, 51 (1972).Google Scholar

The diversity in the factors which are presented as indicators of personhood suggests caution. See Johnson, , Selective Non-Treatment of Defective Newborns: An Ethical Analysis, 47 Ljnacre Quart. 39, 45–47 (1980).Google Scholar For a jurisprudential view that a monster is not a human being see G. Williams, The Sanctity of Life and the Criminal Law, 20-21, 31-35 (1957); Williams, , supra note 13Google Scholar at 1021. Fora medical view positing that where the prospects for “life“ are minimal, infants should not be treated as persons see Lachs, , Humane Treatment and the Treatment of Humans, 294 New Eng. J. Med. 838 (1976).Google Scholar This essay does not rely upon “definitional perceptions” of humanhood because of the dangers inherent in removing the concept of humanity from individuals or groups of individuals. Id. See also Ramsey, , supra note 2, at 189–227;Google Scholar Bok, , Ethical Problems of Abortion, 2 Hast. Cen. Studs. 33, 41 (1974);Google Scholar Robertson, , supra note 4, at 246-51.Google Scholar

Definitional exemptions from personhood are sought to avoid an explicit breach of the core societal value that intentional taking of life is never justified. Havighurst, Blumstein, Bovberg, , Strategies in Underwriting the Costs of Catastrophic Disease, 40 Law Contemp. Prob. 122, 160 (1976).Google Scholar This removes the necessity of offering clear justifications for non-treatment decisions relating to “non-persons.” See, e.g., Fletcher, Bard, , The Right to Die, Atlantic Monthly 39, 64 (Apr. 1968)Google Scholar (a father should feel no guilt over the death of a Down's Syndrome infant for guilt is only relevant to a person, and “a Down's is not a person.“).

16 While the various ideas that life is sacrosant are often vague and misleading, see, e.g. Frankena, , The Ethics of Respect for Life, in Respect for Life in Medicine, Philosophy, and the Law 24 (S.F., Barker ed. 1977),Google Scholar they are nonetheless deeply ingrained in Judeo-Christian society. Roman Catholic Bishops’ Conference for England and Wales, The Times (London) Nov. 7, 1981, at 3, col. 1 (The right to life for all “innocent people” is totally independent of the wishes of others or the judgment of society. There is no difference whether the person is “in full vigour” or handicapped, whether their life is beginning or ending. But there is no moral obligation to undertake “major and dangerous” treatment when it will only briefly interrupt the onset of death); Moshe Tendler, a Professor of Talmudic Law, has stated that “a person who has but a few minutes to live is no less of value than a person who has 60 years to live … a handicapped individual is a perfect specimen when viewed in an ethical context. The value is an absolute value. It is not relative to life expectancy, to state or health or to usefulness to society.” H. Brody, Ethical Decisions in Medicine 75 (1981).

17 There has been much discussion between “ordinary” and “extraordinary,” between “feasible” and “non-feasible,” and between “conventional” and “unorthodox” medical treatment. See, e.g., In re Conroy, 98 N.J. 321, 486 A.2d 1209, 1234-35; Honey, , Acts and Omissions, 5 J. Med. Ethics 143 (1979);Google Scholar Robertson, , supra note 4, at 235-37.Google Scholar Some have argued that these traditional distinctions provide fruitful guidelines in determining the treatment of handicapped infants. Josen, , Traditional Distinctions for Making Ethical Judgments, 1984 Ariz. Stat. L.J., 661 (1984);Google Scholar Comment, Baby Doe Decisions: Modern Society Sins of Omission, 63 Neb. L. Rev. 888 (1984). Others cogently suggest that these distinctions are unclear in their application. Capron, , Borrowed Lessons: The Role of Ethical Distinctions in Framing Law on Life-Sustaining Treatment, 1984 Ariz. Stat. L.J. 647 (1984).Google Scholar For the purpose of this essay, treatment decisions for handicapped infants are measured against those for “normal” infants with similar medical needs. A conventional or feasible treatment is one which, given the potential efficacy and risks, would be administered to a non-handicapped infant.

18 See Havighurst, , Blumstein, Bovberg, , supra note 15, at 140-45.Google Scholar

19 American Academy of Pediatrics, Joint Policy Statement Principles of Treatment of Disabled Infants, 73 Pediatrics 559, 561 (1984).

20 Child Abuse and Neglect Prevention and Treatment Program: Notice of Proposed Rule Making, 49 Fed. Reg. 48161, 48161-62 (1984) [hereinafter cited as “Child Abuse Proposed Rules“].

21 The courts have already recognized that in certain circumstances, a decision may be made on behalf of an incompetent adult to withhold life-sustaining treatment. See infra notes 66-70 and accompanying text.

22 As to the case law regarding the medical treatment of children in the absence of parental consent, see infra notes 49-77 and accompanying text.

23 For a comprehensive assessment of utilitarianism in the context of treatment decisions for the newborn see Robertson, , supra note 4, at 252-62.Google Scholar

24 Courts have been reluctant expressly to adopt a “quality of life” criterion and have been careful not to demarcate a class of individuals, such as the mentally retarded or senile, as deserving a lower standard of legal protection. Yet several courts have made implicit assessments of personal quality of life and normalcy in coming to their decisions. It is helpful to distinguish between two groupings of cases to determine whether a court is actually employing a “quality of life” standard. The first are cases which are decided principally by an assessment I of the medical benefits, risks and adverse effects of the treatment in question. (Is there a “substantial chance for cure?” Are there “medically effective alternative treatments?“) Here, the court's decision follows directly from the medical assessment. The principal finding is factual, i.e., whether a medical consensus exists that the treatment is indicated and that there are no medically recognized alternatives. Given this finding of fact courts will usually come to the same decision, irrespective of the legal standard applied. See, e.g., Custody of a Minor, 375 Mass. 733, 379 N.E.2d 1053 (1978), aff'd, 378 Mass. 732, 393 N.E.2d 836 (1979) (order permitting chemotherapy for minor patient suffering from acute lymphocytic leukemia over parental objection; court found chemotherapy offered a “substantial chance for cure” and the alternative treatment of metabolic therapy was medically ineffective and poisonous); In re Hofbauer, 65 A.D.2d 108, 411 N.Y.S.2d 416 (1978), aff'd, 47 N.Y.2d 648, 393 N.E.2d 1009, 419 N.Y.S.2d 936 (1979) (a child suffering from Hodgkins Disease whose parents failed to follow attending physician's recommendation for treatment by radiation and chemotherapy, but rather placed child under care of licensed physician advocating nutritional or metabolic therapy, was not a neglected child; court found parents had justifiable concerns about deleterious effects of radiation and chemotherapy, that alternative treatments were controlling child's condition, and that conventional treatments would be administered if child's condition so warranted); Ex rel Cicero, 101 Misc. 2d 699, 421 N.Y.S.2d 965 (Sup. Ct. 1979) (guardian appointed to consent to corrective surgery for infant born with meningomyelocele. The court found child unlikely to live beyond 24 months without surgery and that surgery would permit child to walk with leg braces and to have “normal intellectual development” with little future risk of mental retardation.).

The cases cited above should be distinguished from those where the court is influenced not only by its findings of fact as to the choices of treatment, but also by the person's wider characteristics, including his or her potential for intellectual and social functioning. See, e.g., In re Phillip B., 92 Cal. App. 3d 796, 156 Cal. Rptr. 48 (1979), cert, denied sub. nom, 445 U.S. 949 (1980) (court declined to order life-prolonging heart surgery for minor suffering from congenital ventricular septal heart defect. The trial court found corrective surgery to be medically indicated with 5 to 10 per cent mortality rate but noted that the child had Down's Syndrome; the judge commented that he personally could not handle it “if it happened to me.“); Infant Doe, supra note 5 (court order barring doctors from providing nourishment or treatment for Downs Syndrome infant born with a deformity in the stomach wall which prevented food being digested; the condition could have been corrected by surgery which was serious but considered within the range of standard medical practice); In re Spring, 380 Mass. 629, 405 N.E.2d 115 (1980) (court approval for removal of 78 year old patient from kidney dialysis, probate court found patient to be senile and incapable of restoration to a “normal, cognitive, integrated functioning existence“); Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977) (authorization for non-treatment of 67 year old mentally retarded ward suffering from acute myeloblastic monocytic leukemia; probate court found chemotherapy was life-prolonging and was treatment of choice, but patient's profound retardation was a significant issue in the case); In re Conroy, 98 NJ. 321, 486 A.2d 1209 (1985) (nursing home resident with severe and permanent mental and physical defects and limited life expectancy could have life-sustaining treatment withdrawn in certain circumstances).

If one were to remove the wider “quality of life” element from the facts of these cases the results would appear anomalous and, in some instances, clearly erroneous. It is highly probable that the court in each of these cases would have opted to prolong a life it considered worth living. See Annas, , Quality of Life in the Courts: Early Spring in Fantasyland, 10 Hast. Cen. Rpt. 9 (Aug. 1980).Google Scholar A further, albeit less apparent, instance of a quality of life assessment occurred in In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert, denied, 429 U.S. 922 (1976) and its progeny. See infra note 66. See also, Annas, , Reconciling Quinlan and Saikewicz: Decision-Making for the Terminally III Incompetent, 4 Am. J.L. Med. 367 (1979).Google Scholar

25 See, e.g., Goldstein, , supra note 4, at 651-61;Google Scholar Williams, , supra note 13, at 1020-21.Google Scholar

26 In re Quinlan, 70 N.J. 10, 355 A.2d 657, cert, denied, 429 U.S. 922 (1976).

27 See infra note 66.

28 It has been suggested that the Quinlan criteria would not apply in the case of severely defective newborns because the infant's quality of life seems more hopeful. Ellis, supra note 4, at 405-07. It is difficult to see what hope the life of a permanently comatose infant possibly promises to offer. Courts could not reasonably apply special protective standards for the newborn who has no reasonable potential for attaining a cognitive sapient existence. In one case, for example, the Massachusetts Supreme Court ordered that no extraordinary resuscitative measures should be taken in the case of a conscious and cognitive infant who did not have a life expectancy beyond one year. Custody of a Minor, 385 Mass. 697, 434 N.E.2d 601 (1982).

29 Anencephaly is a partial or total absence of the brain. See Hamilton, Hutchison, Fraser, Kooh Farquhar, Disorders of the Endocrine Glands, in Textbook of Paediatrics 1128-29 (J. Forfar G. Arneil 3d ed. 1984). One distinguished pediatrician refers to anencephaly as “a lethal malfunction in which the vault of the skull is absent and the exposed brain is amorphous. Between 75 and 80 percent of these infants are stillborn and the remainder succumb within hours or a few days after birth.” Bell, Abnormalities in Size and Shape of the Head, in Diseases of the Newborn 716-17 (A. Schaffer M. Avery 4th ed. 1977).

30 In hydranencephaly the bulk of the cerebral cortex is replaced by fluid. See Brown, , Stark, , Minns, , Aicardi, , Shaw, , Steer, , Townsend, , Macdonald, , Forfar, and Fulford, , Disorders of the Central Nervous System, in Textbook of Paediatrics 704 (J., Forfar G., Arneil 3d ed. 1984)Google Scholar [hereinafter cited as Disorders of the CNS]; Bell, supra note 29, at 733-35;Google Scholar L. Holmes, H. Moser, S. Haldorsson, C. Mack, S. Plant, B. Matzilevich, Mental Retardation: An Atlas of Diseases with Associated Abnormalities, 204 (1972) [hereinafter cited as Mental Retardation].

31 The term hydrocephalus encompasses a group of conditions associated with ventricular enlargement. Hydrocephalus implies the presence of an increased quantity of cerebrospinal fluid under increased pressure. Abnormal enlargement of the head often occurs when hydrocephalus begins prenatally (as with babies born with myelomeningocele) or in the newborn period. Newborns with very extreme forms of hydrocephalus, especially if complicated by other abnormalities or by CNS infection may not have the potential to lead a conscious sapient existence. See Bell, , supra note 29, at 725-33;Google Scholar Disorders of the CNS, supra note 30, at 700-04.

32 There are cases where the medical response at birth often is not to take special resuscitation measures. More difficult issues arise after extrauterine life has been established but where there may be little potential for a fully cognitive sapient existence.

33 Leucodystrophies and leucoencephalopathies are disorders of myelination in a developing young brain. In Krabbe's Leucodystrophy, for example, at about three months babies become fretful, vomit a n d lose weight. The r e is optic atrophy and eventual blindness. Fits and spasms occur, accompanied by the inability to swallow, and finally a generalized flaccid paralysis. Death occurs within two years and frequently before one year of age. See Disorders of the CNS, supra note 30, at 781-82; Mental Retardation, supra note 30, at 18.

34 Trisomy 13 is a chromosome defect. The baby is low birth weight, microcephalic, and commonly has abnormalities of the ears, eyes, limbs and heart. All a re severely mentally retarded, with marked hypertonia and myoclonic spasms. Half of these infants live beyond one month, more than half the remainder die before three months, and only five per cent survive beyond three years. See Bell, , supra note 29, at 917-18;Google Scholar Bain Ellis, Chromosomal Disorders in Textbook of Paediatrics 912-13 (J. Forfar G. Arneil 3d ed. 1984); Mental Retardation, supra note 30, at 164.

35 Such an infant would rapidly die without dialysis or kidney transplant, neither of which are done for neonates. While the brain may be normal, the metabolic abnormalities would soon produce coma and death.

36 Infants, for various reasons, may suffer from hemorrage, asphyxia, or infection at birth, generally resulting in grievous life long injuries. See Bell, Perinatal Insults to the Brain and Spinal Cord in Diseases of the Newborn 703-15 (A. Schaffer M. Avery 4th ed. 1977).

37 For a discussion of persistent states of minimum cognition in incompetent adult patients, see Jennett, Plum, , Persistent Vegetative State After Brain Damage: A Syndrome in Search of a Name, 1 Lancet 734 (1972).Google Scholar

38 It is often difficult to detect, only hours or days following birth, what the neonate (particularly if severely defective) is experiencing of the outside world or what he is likely to experience in the future. It seems imperative for the medical profession to arrive at a code to guide attending pediatricians’ prognoses under these circumstances. Certain forms of objective evidence should be required before an infant may be declared to have severely impaired response potential. For example, the code might refer to the absence of active response to food, noise, sight, rocking and cuddling or other human stimulation; the prognosis, however, would have to refer to maximum future potential, as opposed to existing capabilities.

The use of statutory or judicial standards in conjunction with medical guidelines has an analogy with brain death. See generally Lovato v. District Court, 198 Colo. 419, 601 P.2d 1072, 1076 n. 6 (1979); Schneck, , Brain Death and Prolonged States of Impaired Responsiveness, 58 Den. L. J. 609, 618-25 (1981).Google Scholar A similar code of guidance is needed to assist in the reliable identification of severely impaired response potential in neonates. For a discussion of the state of consciousness of a newborn and his predictable directed responsiveness when in a social interaction with a nurturing adult or when receiving attractive auditory, tactile or visual stimuli, see Brazelton, Neonatal Behavior and its Significance in Diseases of the Newborn, 37-56 (A. Schaffer M. Avery 4th ed. 1977).

39 See supra notes 10-11 and accompanying text.

40 A feature of the case law relating to selective non-treatment decisions is the very short life expectancy of the incompetent patient, together with the minimal potential for learning and development. See, e.g., Custody of a Minor, 385 Mass. 697, 434 N.E.2d 601 (1982); In re Spring, 380 Mass. 629, 405 N.E.2d 115 (1980); Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977). Severely limited life expectancy is taken to mean that the neonate would not be expected to live beyond infancy, usually under 24 months

41 In this condition there is a storage of ganglioside GM on the brain and in the viscera. As a result, the brain may be very large (megalencephaly) but if the infant lives longer than 18 months, secondary degeneration in white matter, and extensive cell loss, may result in cerebral atrophy and a small brain. The disease occurs primarily in Ashkenazi Jews. The clinical picture is described infra in the text accompanying notes 60-61. See also Disorders of the CNS, supra note 30, at 775; Birth Defects Compendium 486-87 (D. Bergsma ed. 1979); Mental Retardation, supra note 30, at 62. A similar disease is infantile GM1 Gangliosidoses where there is a generalized storage of GM1 ganglioside. The end result is blindness, deafness and decerebrate rigidity with death from 2 months to 3 years. See Disorders of the CNS, supra note 30, at 775-76; Mental Retardation, supra note 30, at 22.

42 Menkes Syndrome, also known as steely-hair or kinky hair disease, is inherited in an X-linked recessive fashion. Within a few weeks drowsiness, lethargy, hypotonia, and feeding difficulties appear; hypothermia is common, as are progressive developmental retardation, spasticity, seizures, variable muscle tone and immobility. The infant develops a decerebrate posture and appears unaware of his surroundings. Death usually occurs in the first or second year. Buist, Kennaway, Kelly, Lloyd, Fernandes, Hume Forfar, Metabolic Disorders, in Textbook of Paediatrics 1235-36 (J. Forfar G. Arneil 3d ed. 1984); Mental Retardation, supra note 30, at 100; Birth Defects Compendium, 694-95 (D. Bergsma ed. 1979).

43 Apart from Trisomy 21 (Down's Syndrome), trisomy of chromosome 18, also called Edward's Syndrome is probably the most commonly encountered autosomal trisomy. Many affected babies are of low birthweight, with a small elongated head and a flattening of the forehead down to the nose. Cardiac and renal anomalies are invariably present. Thirty percent die by 1 month, 50 percent by 2 months, 70 percent by 3 months, 90 percent by 1 year and 99 percent before age 10. Survivors are profoundly retarded in motor and intellectual development. None have been able to walk or talk. Bain Ellis, Chromosomal Disorders in Textbook of Paediatrics 910-12 (J. Forfar G. Arneil 3d ed. 1984); Mental Retardation, supra note 30, at 160; Birth Defects Compendium 201-202 (D. Bergsma ed. 1979).

44 Down's Syndrome is a chromosomal defect which usually results in mental retardation. Because there are three number 21 chromosomes instead of the usual two, this condition has been given the medical classification of Trisomy 21. See generally Craft, Chromosomal Abnormalities, in Tredgold's Mental Retardation 52-54 (M. Craft 12th ed. 1979). The cumulative results of scientific, psychological and educational research in the last decade have demonstrated that the potential of infants born with a recognized primary syndrome or condition such as Down's Syndrome has been seriously underestimated. With systematic training, education, and stimulation during the early years of development, the majority of Down's Syndrome children without any accompanying irremediable disability can expect to develop basic social and motor skills, including language, mobility, and, often, literacy. These children possess the potential for social interaction, family integration and the formation of peer relationships. The increased knowledge of early development and a heightened awareness of the importance of education and normal emotional interchange has considerably altered the conception of a Down's Syndrome child from that of a passive and unresponsive recipient of information to a person capable of active learning and progressive human development. Down's Syndrome children are as diverse in their desire and ability to participate in social activity and in the enjoyment of life as other children. See Rynders, , Spiker, Horobin, , Underestimating the Educability of Down's Syndrome Children: Examination of Methodology Problems in Recent Literature, 82 Am. J. Ment. Def. 440 (1978);Google Scholar Clarke, Clarke, , Mental Retardation and Behavioral Change, 30 Brit. Med. Bull. 179 (1974);Google Scholar Drash, , Increasing Intelligence and Speech in Down's Syndrome Infants: A Three to Five Year Follow-up, 5 Down's Syndrome: Papers and Abstracts for Professionals 2 (1982);Google Scholar See Cunningham, , Early Stimulation of the Severely Handicapped Child in Tredgold's Mental Retardation 82 (M., Craft 12th ed. 1979);Google Scholar Kirman, , Growing up with Down's Syndrome, Brit. J. Hosp. Med. 385 (April 1980);Google Scholar Cooke, , Heron, , Heward, Test, , Integrating a Down's Syndrome Child in a Classroom Peer Tutoring System: A Case Report, 20 Mental Retardation 22 (1982);Google Scholar Sinson, Wetherwick, , 77*e Behavior of Children with Down's Syndrome in Normal Playgroups, 25 J. Ment. Def. 113 (1981);Google Scholar Harris,Physical Therapy and Infants with Down's Syndrome: The Effects of Early Intervention, 42 Rehabilitation Literature 339 (1981). For a review of the literature on the capacity for growth and development of Down's Syndrome children and adults see S. Pueschel L. Steinberg, Down Syndrome: A Comprehensive Bibliography 349-59 (1980).

45 Spina bifida is a developmental defect in which the newborn baby has part of the spinal cord and its coverings exposed through a gap in the backbone. The symptoms may include paralysis of the legs, incontinence, and mental retardation from the commonly associated brain defect, hydrocephalus. Spina bifida is associated with abnormally high levels of alphafetoprotein in the amniotic fluid surrounding the embryo. The condition can be diagnosed at about the 16th week of pregnancy by a test on the amniotic fluid (amniocentesis). See Disorders of the CNS, supra note 30; Sylvester, Craft, , Acquired Conditions, in Tredgold's Mental Retardation 115, 118-19 (M. Craft 12th ed. 1979);Google Scholar Ellis, , supra note 4, at 395-96.Google Scholar Professor Lorber reports that of the first 41 spina bifida infants selected for non-treatment (food, water and nursing care only) none survived beyond eight months and 60% were dead before they reached one month of age. Lorber, , supra note 4, at 55.Google Scholar Elsewhere he reports that of his selective non-treatment cases, 80% die within three months and only four percent are still alive before one year. Lorber, , The Management of Spina Bifida, 27 Oxford Medical School Gazette 76 (1975).Google Scholar

46 One of the most difficult cases is illustrated by Pelizaeus-Merzbacher disease which is a more chronically slow progressive disorder. The speech is at best limited to a few words; usually only grunting sounds are made. By three to six years of age many patients are immobile with scissoring of their legs and flexed arms. Optic pallor and loss of vision develops late in the course of the disease. Dementia, a masklike facial expression, and seizures usually occur. Terminally, the patients have difficulty in swallowing, vomit frequently, and are incontinent. Mental Retardation, supra note 30, at 75.

47 See infra note 68.

48 See, e.g., In re Quinlan, 70 N. J. 10, 355 A.2d 647, cert, denied, 429 U.S. 922 (1976); In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985).

49 Compare Goldstein, , Medical Care for the Child at Risk: On State Supervention of Parental Autonomy, 86 YALE L.J. 645 (1977)Google Scholar (strong presumption in favor of parental autonomy) with Dickens, , The Modern Function and Limits of Parental Rights, 97 L.Q.R. 462 (1981)Google Scholar (parental function is limited to protection of children against physical, psychological, social and moral harm). See also Horvvitz, , Of Love and Laetrile: Medical Decision-Making in a Child's Best Interests, 5 Am. J.L. Med. 271 (1979);Google Scholar Note, Judicial Limitations on Parental Autonomy in the Medical Treatment of Minors, 59 Neb. L. Rev. 1093 (1980).

50 See Poe v. Gerstein, 517 F.2d 787, 789 (5th Cir. 1975). The concept of “child as chattel“ is a frequently overstated common law principle. Even at common law it was a misdemeanor “to neglect to supply necessaries to a child, being of tender years and unable to provide for itself, and whom the defendant was bound either by duty or contract to support.” R. v. Friend, 168 Eng. Rep. 662 (1802). However, it was not sufficient to support an indictment for neglect, abandonment, or exposure to prove “that the children did suffer in some degree … but not to any serious extent.” R. v. Phillpot, 169 Eng. Rep. 686, 687 (1853). The common law established boundaries to parental decision-making. Clearly outside of the scope of parental choice are decisions which adversely affect the child's opportunity to live. Blackstone commented on the obligations of parents at common law: “By begetting them … they have entered into a voluntary obligation to endeavor, as far as in them lies, that the life which they have bestowed shall be supported and preserved.” 1 W. Blackstone, Commentaries 447.

51 See, e.g., Custody of a Minor, 374 Mass. 733, 379 N.E.2d 1053 (1978), aff'd 378 Mass. 732, 393 N.E.2d 836 (1979); In re Cicero, 101 Misc. 2d 699, 421 N.Y.S.2d 965 (Sup. Ct. 1979); In re Rockowitz, 175 Misc. 948, 25 N.Y.S.2d 624 (Dom. Rel. Ct. 1941) (leg deformity would deteriorate without treatment); In re Sampson, 65 Misc. 2d 658, 317 N.Y.S.2d 641 (Fam. Ct. 1970), affd, 37 A.D.2d 668, 323 N.Y.S.2d 253 (1971), affd, 29 N.Y.2d 900, 278 N.E.2d 918, 328 N.Y.S.2d 686 (1972) (court ordered corrective surgery for severe, but not lifethreatening, facial deformity). But see, e.g.,-In re Green, 448 Pa. 338, 292 A.2d 387 (1972) (remanding to trial court), affd on remand, 452 Pa. 373, 307 A.2d 279 (1973) (juvenile who did not desire surgery to correct spinal curvature was not a neglected child); In re Seiforth, 309 N.Y. 80, 127 N.E.2d 820 (1955) (court would not interfere with parental decision refusing surgery to correct child's harelip and cleft palate).

52 People v. Labrenz,411 111.618, 104 N.E.2d 769, cert, denied, 344 U.S. 824(1952); Luka v. Lowrie, 171 Mich. 122, 136 N.W. 1106(1912); Raleigh Fitkin-Paul Morgan Mem. Hospital v. Anderson, 42 N.J. 421, 201 A.2d 537, cert. denied, 377 U.S. 985 (1964); State v. Perricone, 37 N.J. 463, 181 A.2d 151,cert, denied, 371 U.S. 890(1962); Hoener v. Bertinate, 67 N.J. Super. 517, 171 A.2d 140 (1961); In re Vasko, 328 A.D.128, 263 N.Y.S. 552 (1933); In re Brooklyn Hosp., 45 Misc. 2d 914, 258 N.Y.S.2d 621 (Sup. Ct. 1965).

53 See generally Dickens, , infra note 49, at 463;Google Scholar Horwitz, , infra note 49;Google Scholar Note, Judicial Limitations on Parental Autonomy in the Medical Treatment of Minors, 59 Neb. L. Rev. 1093, 1094 (1980); Note, Birth Defective Infants: A Standard for Non-Treatment Decisions, 30 Stan. L. Rev. 599, 609, 613 (1978).

54 In re Cicero, 101 Misc. 2d 699, 421 N.Y.S.2d 965 (Bronx County Sup. Ct. 1979) (appointed guardian to consent to treatment of a myelomeningocele); In re Jeff and Scott Mueller, Nos. 81J3000 and 81J301, slip op. (5th Cir. May 15, 1981) (custody awarded to authorize surgery and medical treatment for separation of Siamese twins jointed at the waist); In re Elin Daniels, No. 81-15577FJ01, slip. op. (Fla. Cir. Ct. June 23, 1981) (court overrode parental refusal to treatment with spina bifida infant); In re B [1981] 1 W.L.R. 1421 (wardship granted in order to treat blocked intestine in Down's Syndrome infant); Superintendent of Family and Child Service and Dawson, 145 D.L.R. (3d) 610 (1983) (interim custody order granted to treat blockage in shunt for six year old boy with severe multiple mental and physical handicaps). See also, Portels, , The Elin Daniels Case: An Examination of the Legal and Ethical Considerations Posed when Parents and Doctors Disagree Whether to Treat a Defective Newborn, 18 Forum 709 (1983).Google Scholar

55 In Weber v. Stony Brook Hospital, 95 A.D.2d 587, 467 N.Y.S.2d 685 (N.Y. App. Div. 1983), off∼'d on procedural grounds, 60 N.Y.2d 208, 456 N.E.2d 1186 (N.Y. Ct. App. 1983) the parents chose a conservative course of treatment with antibiotics instead of surgery for their spina bifida infant. The court held that this was in the child's “best interests,” as conservative treatment was “well within accepted medical standards” and the infant's life was not in “imminent danger.“

56 Infant Doe, supra note 5. The court's reasoning in this case cannot be analysed because the judicial record is sealed. See also, Note, Withholding Treatment from Defective Infants: “Infant Doe” Postmortem, 59 Notre Dam. L. Rev. 224 (1983).

57 In re Phillip B., 92 Cal. App. 3d 796, 156 Cal. Rptr. 48 (1979), cert, denied, 445 U.S. 949 (1980).

58 Despite the risk of mortality, which one cardiologist placed at 3-5 percent and another at 5-10 percent in Philip B., mental retardation texts recommend surgery. Craft, Chromosomal Abnormalities, in Tredgold's Mental Retardation 52-53 (M. Craft 12th ed. 1979). The two cardiologists who gave testimony in the Philip B. case both said that the condition was surgically correctable. In this context the risk of mortality due to surgery must be balanced against the certainty of a shortened life if surgery is not performed. See Annas, , Denying the Rights of the Retarded: The Phillip Becker Case, 9 Hast. Cen. Rpt. 18 (Dec. 1979).Google Scholar

59 In the President's Commission for the Study of Ethical Problems in Medicine and Blomedicai. and Behavioral Research, Deciding to Forego Llfe-Sustaining Treatment (1983) a “higher value than life is proposed namely personal autonomy. Prolongation of a terminal patient's life imposed over autonomous preference is presented as diminished life, denied dignity.” Dickens, , The Final Freedom: Deciding to Forgo Life-Sustaining Treatment, 1984 Pub. L. 34, 35.Google Scholar

60 Under common law, the right of a competent patient to refuse beneficial medical treatment has been judicially stated on many occasions. See, e.g., Justice Cardozo's oft repeated principle in Schloendorffv. Society of the New York Hospital, 211 N.Y. 125, 129-30, 105 N.E. 92, 93 (1914) (“Every human being of adult years and sound mind has the right to determine what shall be done to his own body ….“). For a review of the decisions upholding a common law right to self-determination, see Eichner v. Dillon, 73 A.D.2d 431, 455-56, 426 N.Y.S.2d 517, 536-37(1980). See also In re Conroy, 98 N.J. 321,486 A.2d, 1209, 1221-23(1985); Perna v. Pirozzi, 92 N.J. 446, 459-65, 457 A.2d 431 (1983); Barber v. Superior Court of State of California, 147 Cal. App. 3d 1006, 195 Cal. Rptr. 484, 489 (1983). The right of selfdetermination which the common law “undoubtedly recognises” is “no more and no less than the right of a patient to determine himself whether he will or will not accept the doctor's medical advice.” Sidaway v. Bethlem Royal Hospital Governors [1985] 1 All E.R. 643, 649 H.L., per Lord Scarman.

61 One line of cases suggests that where there is no substantial countervailing interest such as an unborn child or a dependent, an adult patient can refuse a life-saving blood transfusion provided he or she is conscious and understands the implications of the decision. In re Melideo, 88 Misc. 2d 974, 390 N.Y.S.2d 523 (Sup. Ct. 1976); Erickson v. Dilgard, 44 Misc. 2d 27, 252 N.Y.S.2d 705 (Sup. Ct. 1962); Annot. 93 A.L.R. 3d 67, 72 (1979).

Specifically, if the refusal of a blood transfusion was based upon religious beliefs, the court would uphold the patient's decision, e.g., In re Osborne, 294 A.2d 372 (D.C. Cir., 1972); In re Estate of Brooks, 32 I11.2d 361, 205 N.E.2d 435 (1965), but not if the patient was incompetent and emergency treatment was needed to save his or her life, see, e.g., Application of President Directors of Georgetown College, Inc., 331 F.2d 1000 (D.C. Cir.), reh'g den., 331 F.2d 1010 (D.C. Cir.), cert, denied, 377 U.S. 978 (1964); John F. Kennedy Memorial Hospital v. Heston, 58 N.J. 576, 279 A.2d 670 (1971), or if the patient were a minor or had a dependent, see, e.g., Application of President and Directors of Georgetown College, Inc., 331 F.2d at 1007-08, or pregnant, Raleigh Fitkin-Paul Morgan Memorial Hospital v. Anderson, 42 N.J. 421, 201 A.2d 537, cert, denied, 377 U.S. 985 (1964

Competency of the patient to refuse life-saving treatment has also been the major factor influencing courts in other contexts. In Lane v. Candura, 6 Mass. App. Ct. 377, 376 N.E.2d 1232 (1978), in In re Quackenbush, 156 N.J. Super. 282, 383 A.2d 785 (1978) and Petition of Nemser, 51 Misc. 2d 616, 273 N.Y.S.2d 624 (1966), courts would not allow applications to override the refusal of a patient to consent to the amputation of a gangrenous leg because of insufficient evidence of their incompetence. Similar facts were present in State Dep't of Human Service v. Northern, 563 S.W.2d 197 (Tenn. Ct. App. 1978), appeal dismissed as moot, 436 U.S. 923 (1978), but in that case the court held the patient was competent and the refusal of an amputation could be overridden. In re Yetter, 62 Pa. D. C.2d 619 (1973), the court refused to appoint a guardian for the purpose of consenting to medical treatment for breast cancer on evidence that the patient was competent and had no children. There are a large number of cases where courts have supported substitute decisions to remove life support systems from dying patients; all save two, Satz v. Perlmutter, 362 So. 2d 160 (Fla. Dist. Ct. App. 1978), aff'd, 379 So. 2d 357 (Fla. 1980), and Bartling Bartling v. Superior Court, 85 Daily J. D.A.R. 83 (Cal. 1985), involved comatose or other clearly incompetent patients and are not dealt with in note 66, infra. Similarly, courts have been prepared to honor the rational decision of a competent patient not to undergo life-prolonging treatment such as renal dialysis even though he has since become comatose. In re Lydia E. Hall, Hosp., 116 Misc. 2d 477, 455 N.Y.S.2d 706 (Sup. Ct. 1982). See generally Annot., 93 A.L.R. 3d 67 (1979); Byrn, , Compulsory Lifesaving Treatment for the Competent Adult, 44 Fordham L. Rev. 1 (1975);Google Scholar Cantor, , A Patient's Decision to Decline Life Saving Medical Treatment: Bodily Integrity Versus the Preservation of Life, 26 RUTGERS L. Rev. 228 (1973);Google Scholar Kennedy, , The Legal Effect of Requests by the Terminally III and Aged Not to Receive Further Treatment From Doctors, 1976 Crim. L. Rev. 217;Google Scholar Montange, , Informed Consent and the Dying Patient, 83 Yale L J. 1632(1974);Google Scholar Note, Voluntary Active Euthanasia for the Terminally III and the Constitutional Right to Privacy, 69 Cornell L. Rev. 363, 369-79.

62 Doev. Bolton410 U.S. 179, 213 (1973) (Douglas, J., concurring). See also, Roe v. Wade, 410 U.S. 113 (1973) (a woman's right to decide whether to terminate her pregnancy was conditionally protected under the rubric of privacy); see supra note 2.

63 Severns v. Wilmington Med. Center, Inc., 421 A.2d 1334 (Del. 1980); Satz v. Perlmutter, 362 So. 2d 160 (Fla. Dist. Ct. A p p. 1978), aff'd, 379 So. 2d 359 (Fla. 1980); Lane v. Candura, 6 Mass. App. Ct. 377, 376 N.E.2d 1232 (1978); In re Quackenbush, 156 N.J. Super. 282, 383 A.2d 785 (1978); Belchertown v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977); Suenram v. Society of Valley Hospital, 155 N.J. Super. 593, 383 A.2d 143 (1977); In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976); In re Yetter, 62 Pa. D. C.2d 619 (1973). Other courts have taken the view that, while a right of privacy may apply to cases where patients refuse life-sustaining treatment, it is not necessary so to decide since the right is embraced within the common law principle of self-determination. See, e.g., In re Conroy, 98 N.J. 321, 348, 486 A.2d 1209, 1223 (Sup. Ct. 1985), In re Storar, 52 N.Y.2d 363, 376-77, 420 N.E.2d 64, 78, 438 N.Y.S.2d 266, 272-73, cert, denied, 454 U.S. 58 (1981).

64 Several courts have identified various state interests in requiring life-sustaining treatment to be given against the wishes of dying patients. In re Conroy, 98 N.J. 321, 348-55, 486 A.2d 1209, 1223-26 (1985); In re Colyer, 99 Wash.2d 114, 122, 660 P.2d 738, 743(1983); Saltz v. Perlmutter, 362 So. 2d 160, 162 (Fla. Dist. App. 1978); In re Spring, 380 Mass. 629, 640, 405 N.E.2d 115, 123 (1980); Commissioner of Correction v. Myers, 379 Mass. 255, 261, 399 N.E.2d 452, 456 (1970); Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (Sup. Ct. 1977); In re Torres, 357 N.W.2d 332, 339 (Minn. 1984); Bartling v. Superior Court, 163 Cal. App. 3d 186, 209 Cal. Rptr. 220 (1984). These state interests include:

(i) The preservation of life, which is generally considered the most important of the state interests. This interest is weakest where a competent patient refuses life-sustaining treatment and where prolongation of life is temporary and artificial. Therefore, it will “usually not foreclose a competent person from declining life-sustaining medical treatment for himself.” In re Conroy, 98 N.J. at 349, 486 A.2d at 1223. It would be a different matter if some other actual or potential life were at stake which could not adequately protect itself. See, e.g., State v. Pericone, 37 N.J. 463, 181 A.2d 751,cert denied, 371 U.S. 890(1962); Muhlenberg Hospital v. Patterson, 128 N.J. Super. 498, 320 A.2d 518 (Law. Div. 1974) (both, in effect, requiring blood transfusion to save infant's life over parents’ refusal to consent).

(ii) The prevention of suicide. See Application of the President Directors of Georgetown College, Inc., 331 F.2d 1000, reh'g denied, 331 F.2d 1010, cert. denied, 377 U.S. 978 (1964); John F. Kennedy Memorial Hospital v. Heston, 58 N.J. 576, 279 A.2d 670 (1971); State v. Perricone, 37 N.J. 463, 181 A.2d 751, cert, denied, 371 U.S. 890 (1962). The state interest in the prevention of suicide is least significant where the patient retains a basic wish to live and where the affliction is not self-induced. See Erickson v. Dilgard, 44 Misc. 2d 27, 252 N.Y.S. 705 (Sup. Ct. 1962).

(iii) The maintenance of the ethical integrity of the medical profession. See Application of the President Directors of Georgetown College, Inc., 331 F.2d 1010, reh. denied, 331 F.2d 1010, cert, denied, 377 U.S. 978 (1964); 58 N.J. 576, 279 A.2d 670 (1971). The force of this interest is lessened by the prevailing medical ethical standards, which do not invariably demand that all efforts toward life prolongation be made. See Bryn, , Compulsory Lifesaving Treatment for the Competent Adult, 44 Fordham L. Rev. 1 (1975).Google Scholar Further the individual right to self-determination usually outweighs institutional considerations.

65 A state interest of some potential magnitude is the protection of third parties, particularly minor children, from harm resulting from the decision of a competent adult to refuse life saving or life-prolonging treatment. See, e.g., Application of the President Directors of Georgetown College, Inc., 331 F.2d 1000, reh. denied, 331 F.2d 1010,mt. denied, 377 U.S. 978 (1964); Holmes v. Silver Cross Hosp. of Joliet, 111., 340 F.Supp. 125 (D. 111. 1972); Hamilton v. McAuliffe, 277 Md. 336, 353 A.2d 634 (1976); United States v. George, 239 F. Supp. 752 (D.C. Conn. 1965). This interest is insignificant where the patient's family are all adults and are all in agreement with his wishes. See, e.g., Saltz v. Perlmutter, 362 So. 2d 160 (Fla. Dist. Ct. App. 1978), aff'd, 379 So. 2d 359 (Fla. 1980); Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977). See also, Annot. 93 A.L.R. 3d 67, 82-83 (1979). The interest of minors has often been overstated, for in cases of life-prolonging rather than life-saving treatment, the minor would not benefit from the slow anguished death of a parent as opposed to a quicker natural death. Other “third party” interests which have been upheld include compulsory treatment for the protection of public health, see, e.g., Jacobson v. Mass., 197 U.S. 11 (1905) (compulsory smallpox vaccination) and to prevent serious risk to prison security, see, e.g., Commissioner of Correction v. Myers, 379 Mass. 255, 263, 265, 399 N.E.2d 452, 457, 458 (prisoner must submit to kidney dialysis rather than be transferred to a lower security prison). Accord, In re Caulk, 125 N.H. 226, 480 A.2d 93 (1984).

66 There is now substantial judicial support for the proposition that the rights to selfdetermination and/or to privacy, sometimes resulting in the withholding of life-sustaining treatment, extends to incompetent patients. The main areas of support can be found in two lines of cases. The first flows from Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977). The Saikewicz court asked whether there should beany social and judicial choice not to administer life-prolonging treatment to an incompetent person. The court answered in the affirmative based upon the “principles of equality and respect for all individuals.” Recognition of the right to refuse treatment “must extend to the case of an incompetent, as well as a competent, patient because the value of human dignity extends to both. The court concluded that the interests of an incompetent person are “not necessarily served by imposing on such persons results not mandated as to competent persons similarly situated,” because it would treat the ward as a person of “lesser status or dignity.” 373 Mass, at 746, 370 N.E.2d at 427-28. Courts have consistently followed this part of the reasoning in Saikewkz. See, e.g., In re Conroy, 98 N.J. 321, 486 A.2d 1209, 1229 (1985); In re Spring, 380 Mass. 629, 405 N.E.2d 115 (1980).

The second line of cases are those following the decision of the New Jersey Supreme Court in In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert, denied, 429 U.S. 922 (1976). Karen Quinlan was in an irreversible coma and was being kept alive through the use of life support systems. She had virtually no choice of returning to a “cognitive sapient life.” 70 N.J. at 26, 355 A.2d at 655. All the courts which have followed Quinlan have agreed that the extremely poor prognosis and the high degree of bodily invasion involved in sustaining the life of a permanently comatose patient meant her right of privacy outweighed the state's interest in preserving her life. Courts have, however, insisted on varying procedures to effectuate the right to privacy. See, e.g., In re Hamlin, 102 Wash.2d 810, 689 P.2d 738 (1983); Barber v. Superior Court, 147 Cal. App. 3d 1006, 1022, 195 Cal. Rptr. 484, 493 (1983); John F. Kennedy Memorial Hospital, Inc. v. Bludworth, 452 So. 2d 921 (Fla. 1984); In re Torres, 357 N.W.2d 332 (Minn. 1984); Leach v. Akron Gen. Med. Center, 68 Ohio Misc. 1, 426 N.E.2d 809 (1980); Severns v. Wilmington Med. Center, 421 A.2d 1334 (Del. 1980); Eichner v. Dillon, 73 A.D.2d 431, 426 N.Y.S.2d 517 (1980), ajj'dsub nom., In re Storar, 52 N.Y.2d 363, 420 N.E.2d 64 (1981).In re Lydia E. Hall Hosp., 116 Misc. 2d 477, 455 N.Y.S.2d 706 (Sup. Ct. 1982), was not wholly on point because the patient herself, while still competent, expressly stated her wish to be removed from kidney dialysis when she slipped into a coma. Courts have even been prepared to rule that treatment of a terminally ill incompetent patient is not necessary before the fact. A “no code” or “do not resuscitate” (DNR) order, entered in the medical record of a terminally ill incompetent patient, directs the hospital staff not to apply intrusive resuscitative measures in the event of cardiac or respiratory failure. Such orders have been upheld by the courts. See, e.g., Custody of a Minor, 385 Mass. 697, 434 N.E.2d 601 (1982); In re Dinnerstein, 6 Mass. App. 466, 380 N.E.2d 134 (1978).

67 Compare In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985) (laying down three separate standards: Subjective (“substitute judgment“) test—where it is clear the particular patient would have refused the treatment in the circumstances; limited objective test—treatment can be terminated for a nursing home resident with severe and permanent mental impairments and limited life expectancy where patient has not unequivocally expressed his desires before becoming incompetent and it is clear treatment would merely prolong suffering; pure objective (“best interests“) test—in the absence oi any trustworthy evidence of patient's views, treatment can be withheld from nursing home resident of above description when burdens of life markedly outweigh benefits so that recurring, unavoidable, and severe pain of life with the treatment would be inhumane) with Barber v. Superior Court, 147 Cal. App. 3d 1006, 1021, 195 Cal. Rptr. 484, 493 (1983) (adopting relevant factors set out by President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment 134-35 (1983): relief of suffering, the preservation or restoration of functioning, the quality as well as the extent of the life sustained, and the impact on those closest to the patient). See In re Conroy, 98 N.J. 321, 396-98, 486 A.2d 1244, 1248-50 (1985) (Handler, J., dissenting in part).

68 Courts considered the issue of withdrawal of life-sustaining treatment have used different procedures to exercise the incompetent's right to privacy. The New Jersey Supreme Court, for example, has allowed the patient's guardian to make the decision in certain circumstances. In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert, denied, 429 U.S. 922 (1976) (guardian can make decision when patient is irreversibly comatose and family, attending physician and hospital prognosis committee concur); In re Conroy, 98 N.J. at 375, 383-85, 486 A.2d at 1237, 1241-42 (1985) (concurrence of above parties not entirely appropriate in cases of incompetent nursing home resident who is not permanently comatose; interested person such as guardian, close family member, attending physician of nursing home to notify Office of Ombudsman; evidence of patient's condition to be furnished by attending physician and nurses, and two independent physicians to confirm medical condition and prognosis; if the two physicians supply necessary medical foundation, guardian, with concurrence of attending physician, may withhold treatment if he believes in good faith that one of the appropriate tests is satisfied; ombudsman must concur in decision; if limited or pure objective test used, family or next of kin must also concur).

The Massachusetts Supreme Court, on the whole, has preferred prior judicial review of cases where life sustaining treatment is to be withdrawn from an incompetent patient. Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E. 2d 417 (1977). That court had to make clear mln re Dinnerstein, 6 Mass. App. Ct. 466, 380 N.E.2d 134 (1978) that a court order was not required before a physician could insert a “do not resuscitate“ order into a patient's record. But where there were no family members willing to make a decision in concurrence with medical staff for a “DNR” order, judicial review was held to be appropriate. Custody of a Minor, 385 Mass. 697, 434 N.E.2d 601 (1982).

The Washington Supreme Court instituted the following procedure for determining whether to terminate life-sustaining treatment for an incompetent patient who has no available family: general guardian must be appointed; if treating physicians and prognosis committee are unanimous and guardian concurs, medical approval is not required; conflicts within or between the hospital, prognosis committee, attending physicians, or guardian should be determined by trial court. In re Hamlin, 102 Wash.2d 810, 689 P.2d 1372 (1984), modifying In re Colyer, 99 Wash.2d 114, 660 P.2d 738 (1983). The different procedures in Quinlan, Saikewicz, and Colyer are discussed in Note, The Incompetent's Right to Refuse Treatment, 51 Tenn. L. Rev. 145 (1983).

69 A number of legislatures have recognized the validity of “living wills.” See, e.g., Cal. Health Safety Code 887185-95 (West Supp. 1985). The National Conference of Commissioners on Uniform State Laws has submitted a proposal for a uniform act recognizing the enforceability of “living wills” in certain circumstances. Whether or not they are legally binding, such wills are relevant evidence of a patient's intent. John F. Kennedy Memorial Hospital, Inc. v. Bludworth, 452 So. 2d 921, 926 (Fla. 1984).

70 See, e.g., In re Guardianship of Barry, 445 So. 2d 365 (Fla. Dist. Ct. App. 1984) (constitutional right to privacy of a ten-month-old terminally ill child wholly lacking in cognitive brain functioning and completely unaware of his surroundings could be exercised by his legal guardians by discontinuing life support system). The Florida Supreme Court specifically supported this analysis in John F. Kennedy Memorial Hospital, Inc. v. Bludworth, 452 So. 2d 921, 926 (1984).

71 See supra, note 51-53.

72 In re B. [1981] 1 W.L.R. 1421, 1424. This passage was quoted with approval in the Canadian case of Superintendent of Family and Child Services v. R.D., supra note 53, at 623. The Canadian case involved a six year old severely mentally retarded boy with no control over his faculties, limbs or bodily functions. His parents refused consent to surgery necessary to correct a blockage in a shunt. The court said “[t]here looms the awful possibility that without the shunt the child will endure in a state of progressing disability and pain. It is too simplistic to say that the child should be allowed to die in peace.” The court granted an interim custody order to ensure treatment, but left open the possibility of a different conclusion in cases of terminally ill children whose lives are “imponderable.” See Sneideman, , The Stephen Dawson Case: Whose Decision is it Anyway? 14 Man. L.J. 165 (1984).Google Scholar

73 In re B. [1981], 1 W.L.R. 1421, 1424.

74 101 Misc. 2d 699, 421 N.Y.S.2d 965, 968 (Bronx County Sup. Ct. 1979).

75 385 Mass. 697, 434 N.E.2d 601 (1982).

76 Id. at 712, 434 N.E.2d at 609.

77 Id. at 708, 434 N.E.2d at 607.

78 Infant Doe, supra note 5.

79 See supra note 6.

80 Section 504 provides that “[n]o otherwise qualified handicapped individual in the United States … shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance ….” 29 U.S.C. § 794 (1982).

81 The legislative history of the Child Abuse Amendments of 1984 cites the Infant Doe case as giving rise to the President's memorandum to the Attorney General (who was ordered to report on the constitutional and statutory remedies available to prevent withholding of medical treatment from handicapped persons). It also cites the decision to withhold treatment from Siamese twins who were born handicapped in Danville, Illinois which resulted in a custody battle and filing of criminal charges against the parents and attending physicians. Legislative History, supra note 9, at 2922-23.

82 Discrimination Against the Handicapped by Withholding Treatment or Nourishment: Notice of Health Care Providers, 47 Fed. Reg. 26,027 (1982) (applying 45 C.F.R. § 84 to health services for handicapped children). The notice states that:

The notice also recognized that Federal fund recipients did not have total control over treatment, but suggested parental withholding of consent for treatment should not be aided by allowing the infant to remain in the institution; failure to comply with § 504 subjected recipients “to possible termination of federal assistance.“

43 ‘Non-Discrimination on the Basis of Handicaps, 48 Fed. Reg. 9630 (1983) (modifying 45 C.F.R. § 84.61). The notice advised any person having knowledge of proscribed discrimination to contact a toll free HHS “hotline” or the child protection agency. The regulation also authorized HHS to conduct immediate investigation to protect the health or life or handicapped infants.

84 561 F. Supp. 395 (D.D.C. 1983).

85 See Administrative Procedure Act, 5 U.S.C. § 706 (2)(A); which extends the scope of judicial review to holding unlawful and setting aside agency action which is “arbitrary or capricious.” Judge Gesell said the record reflected no consideration of: the disruptive effects a 24 hour “hotline” upon the treatment of newborns; the effects of forced removal of an infant from hospital if the parent refuses to consent to treatment; whether termination of painful intrusive treatment might be appropriate where the infant's clear prognosis is death within a few days or months. Academy of Pediatrics, 561 F. Supp. at 399-400.

86 The court found that the rule was not issued in accordance with either the public notice or 30 day delay-of-effective date requirements of the Administrative Procedure Act, 5 U.S.C. § 553 (b) (d); the Secretary also failed to demonstrate good cause why the Administrative Procedure Act notice procedures should be waived. Academy of Pediatrics, 561 F. Supp. at 400-01.

87 Non-discrimination on the Basis of Handicap Relation to Health Care for Handicapped Infants, Proposed Rule, 48 Fed. Reg. 30,846 (July 5, 1983) (proposed rules modifying 45 C.F.R. 84.61).

88 Non-Discrimination on the Basis of Handicap in Programs and Activities Receiving or Benefitting from Federal Financial Assistance: Procedures and Guidelines Relating to Health Care for Handicapped Infants, Final Rule, 49 Fed. Reg. 1622, 45 C.F.R. 84.55 (1984). These provided, inter alia, as follows: (a) Infant Care Review Committee (ICRC) in recipient health care institutions were encouraged but not mandated; (b) Posting of informational notice where health care professionals, but not necessarily parents, could see it. The notice drew attention to proscribed discrimination under Section 504 whereby nourishment and medically beneficial treatment are withheld solely on grounds of infant's present or anticipated impairments, and gave telephone numbers of hospital contact (where there was one), appropriate child protection agency and a 24 hour “hotline” at HHS; (c) Responsibilities of Recipient State Child Protection Agency to use full authority to prevent instances of unlawful neglect including, where appropriate, on-site investigation of such reports and timely applications for court orders for lifesustaining treatment; (d) Expedited Access to Records which was not limited to business hours when necessary to protect life or heath of a handicapped individual.

89 No. 84-6211 (2d Cir. Dec. 27, 1984) cert, granted, 105 S.Ct. 3475 (1985).

90 U.S.C. § 706 (2)(C) (1971) (which extends scope of judicial review to set aside agency action which is in excess of statutory authority).

91 729 F.2d 144 (2d Cir. 1984).

92 See supra note 45.

93 Microcephaly is an abnormal smallness of the head in relation to the rest of the body: a congenital condition in which the brain is not fully developed. Concise Oxford Medical Dictionary 392-93 (Corgi ed. 1982).

94 Hydrocephalus is an abnormal increase in the amount of cerebrospinal fluid within the ventricles of the brain causing an enlarged head in infants. Id. at 298. Spina bifida is commonly associated with hydrocephalus.

95 United States v. University Hospital, State University of New York, 729 F.2d at 157.

96 See supra note 80 for the text of Section 504.

97 “Where the handicapping condition is related to the condition(s) to be treated, it will rarely, if ever, be possible to say with certainty that a particular decision was ‘discriminatory,’ “ United States v. University Hospital, State University of New York, 729 F.2d at 157.

98 Doe v. New York University, 666 F.2d 761 (2d Cir. 1981), establishes that § 504 prohibits discrimination only where the handicap is unrelated to the services in question. “[W]here medical treatment is at issue, it is typically the handicap itself that gives rise to, or at least contributes to, the need for services.” United States v. University Hospital, State University of New York, 729 F.2d at 156.

99 HHS has consistently defended its right to promulgate regulations pursuant to Section 504 and will, if the prior final regulation is reinstated in subsequent stages of ongoing litigation, consider any revisions necessary to facilitate coordinated action with the regulations recently promulgated under the 1984 Amendments to the Child Abuse and Neglect Prevention and Treatment Act of 1974. See Child Abuse Rules, supra note 7. See also infra notes 101-129 and accompanying text. Section 127(a) of the Child Abuse Amendments of 1984, Pub.L. 98 Stat. 1749, 1754, (1984) states that no provision of the 1984 Act is intended to effect any right or protection under Section 504 of the Rehabilitation Act of 1973 and Congress has established a “policy of neutrality” on this legal controversy concerning the applicability of Section 504 to health care for handicapped infants. See 130 Cong. Rf.C. S-12392, daily ed. (Sept. 28, 1984) (Letter from Senators Hatch, Denton, Nickles, Kassebaum, Dodd and Cranston).

100 Pub. L. No. 93-247, 88 Stat. 4 (1974) (codified or amended at 42 U.S.C. § 5101) (1983 Supp. 1985) [hereinafter cited as the Child Abuse Prevention and Treatment Act of 1974].

101 Child Abuse Amendments of 1984, supra note 7.

102 Child Abuse Proposed Rules, supra note 20, at 2.

103 Id. at 48,160.

104 Child Abuse Rules, supra note 7.

105 Id. at 14,879.

106 The two definitions are of the terms “infant” and “reasonable medical judgment.” See infra notes 117 120.

107 The effective date of this section is October 9, 1985; funds have been appropriated under Section 4(C) so the waiver provision is not in effect. Child Abuse and Prevention Act of 1974,42 U.S.C. § 5103 (b)(2)(K), amended by the Child Abuse Amendments of 1984, Pub. L. No. 98-457, 98 Stat. 1749 § 128 (b)(l)(2).

108 The programs and/or procedures must specify that the child protective services will promptly contact each health care facility to obtain the name, title and telephone number of individuals designated by such facilities for the purposes of coordination, consultation and notification activities, and will at least annually recontact each facility to obtain any changes in the designations. Child Abuse Rules,supra note 7, (to be codified at 45 C.F.R. § 1340.15 (c)(3)).

109 In every case which results in a judicial proceeding, the state must ensure the appointment of a guardian ad litem to represent and protect the rights and best interests of the infant. Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340.14(g)).

110 Child Abuse Rules,supra note 7 (to be codified at 45 C.F.R. § 1340.15(c)(l)(2)). Specific statutory reference to the authority to institute legal proceedings is made in the Act only because of the uncertainties of particular child protective agencies to take such action in cases involving withholding of medically indicated treatment from disabled infants. Legislative History, supra note 9, at 2971.

111 Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340.15(c)(4)). The provision for reporting and investigating child abuse are set out in the Child Abuse Rules supra note 7 (to be codified at 45 C.F.R. § 1340.14 (c) and (d)), and are applicable to withholding of medically indicated treatment from disabled infants. The ‘reporting’ provisions require only that states must provide by statute that specified persons must report cases of child abuse and neglect to the child protective agency, and that any other person is permitted to report. The provision for “prompt investigation” may include reporting hotlines, field investigations and interviews, home visits, and medical, psychological and social assessments. HHS surveys the various state requirements for reporting and investigating in the Child Abuse Proposed Rules, supra note 20, 49 Fed. Reg. at 48,161-63.

112 Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340.15(c)(4)).

113 See supra notes 78-99 and accompanying text

114 The concept of “medical neglect” should be understood within the wider context of the definition of “child abuse and neglect” in section 3 of the Child Abuse Prevention and Treatment Act of 1974, 42 U.S.C. § 5102, and in the Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340.2 (d)): “The physical or mental injury, sexual abuse, sexual exploitation, negligent treatment, or maltreatment of a child by a person responsible for the child's welfare under circumstances indicating harm or threatened harm to the child's health or welfare …. “

115 Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340.15 (b)(l)).

116 Child Abuse Prevention and Treatment Act of 1974, 42 U.S.C. § 5102, as amended by the Child Abuse Amendments of 1984, § 121, supra note 7.

117 The term “infant” means: “an infant less than one year of age.” The reference to less than one year of age should not be construed to imply that treatment should be changed or discontinued when an infant reaches one year of age, or to affect or limit any existing protections against medical neglect under state law. Thus, the principal focus of the new Child Abuse provisions are for infants under one year old. In such cases the precisely defined standards in the 1984 Amendment and accompanying regulations must be used. For infants over this age, the more general standard of “medical neglect” is to be used. But the more precise standards should be consulted thoroughly in the evaluation of any issue of medical neglect involving an infant over the age of one year who has been continuously hospitalized since birth, who was born prematurely or who has a long term disability. Congressional intent is to recognize that these categories of infant share important characteristics with infants under one year of age. The Child Abuse Rules supra note 7 (to be codified at 45 C.F.R. § 1340.15 (b)(3)(i)); Legislative History,supra note 9, 4 U.S. Code Cong. Ad. News at 2970. Note that the Child Abuse Proposed Rules stated that the term “infant” always included these three categories of infants over one year of age. The change reflects the intent of the Joint Sponsors that such infants “may” be included. HHS believes that a thorough consideration of the more precise standards should permit an informed judgment on whether they are the most appropriate bases for evaluation of the medical neglect issue. Chile Abuse Rules, supra note 7, 50 Fed. Reg. at 14,882. It remains unclear, however, in what circumstances the more precise standards apply to infants who fall within one of the three categories. A “thorough evaluation” of the standards doesn't give any comprehensive indication of whether those standards are to apply in the case in question. Finally, HHS resisted calls for specific inclusion of infants born alive after attempted abortion; but it made clear that infancy begins at the point of live births, regardless of the circumstances of the live birth.

118 HHS interprets “life threatening condition” to include a condition that, in the treating physician's reasonable medical judgment significantly increases the risk of the onset of complications that may threaten the life of the infant. Thus the Child Abuse provisions would apply in cases where the condition itself was not life threatening (e.g. the risk of serious infection in an open myelomeningocele which is not operated upon). Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340, Appendix, H 2).

119 HHS interprets the term “treatment” in two contexts: (i) in the context of adequate evaluation—“treatment” includes (but is not limited to) “any further evaluation at a facility with specialized capabilities regarding the condition(s) involved that, in the treating physician's reasonable medicaljudgment, is needed to assure that decisions regarding medical intervention are based on adequate knowledge about the case and the treatment possibilities with respect to the medical conditions involved.” This reflects HHS’ interpretation that failure to respond to an infant's life threatening conditions by obtaining further or more specialized evaluation which in the physician's opinion is needed could amount to medical neglect, (ii) In the context of multiple treatments—“treatment includes (but is not limited to) multiple medical treatments and/or surgical procedures over a period of time that are designed to ameliorate or correct a life threatening condition or conditions.” In evaluating whether treatment is “effective,“ “futile” or “inhumane,” the benefits and adverse effects not merely of one medical procedure, but of an entire plan of treatment, should be considered. Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340, Appendix, Till 3-4

120 The term “reasonable medicaljudgment” means one “made by a reasonably prudent physician, knowledgeable about the case and the treatment possibilities with respect to the medical conditions involved.” Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340.15 (b)(3)(ii)).

121 Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340, Appendix, 1! 1).

122 HHS interprets the term “merely prolong dying” as “referring to situations where the prognosis is for death and, in the treating physician's reasonable medicaljudgment, further or alternative treatment would not alter the prognosis in an extension of time that would render the treatment futile.” Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340, Appendix, U 5). The phrase “death is imminent and treatment will do no more than postpone the act of dying” in the Child Abuse Proposed Rules, supra note 20, is deleted in the final rules.

123 The term “not to be effective in ameliorating or correcting all the infant's life-threatening conditions” means that, if the disabled infant suffers from more than one life-threatening condition and, in the physician's reasonable medicaljudgment, there is no effective treatment for one of those conditions, then the infant is not covered by the Amendment except with respect to nutrition, hydration and medication. Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2970. HHS’ interpretation is that the term “not be effective in ameliorating or correcting all the infant's life-threatening conditions” does not permit the withholding of treatment in the following two circumstances: (i) in the context of a future life-threatening condition—where one or more of the infant's life-threatening conditions, although not life threatening in the near future, will become so in the more distant future. An example given in the Proposed Rules, supra note 20, 49 Fed. Reg. at 48,164, was an infant with a duodenal atresia (a lack of opening in the duodenum) and a second condition such as Down's Syndrome or Tay Sach's disease, in which case surgery to unblock the duodenum should be performed, (ii) In the context of palliative treatment—where ameliorative treatment, in the treating physician's reasonable medical judgment, will make a condition more tolerable, such as relieving severe pain, even if the overall prognosis is that the infant will not survive. Thus, if the infant has one life-threatening condition that will cause death in the near future, humane treatment, for example, to relieve severe pain, should be administered. Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340, Appendix, U 6-7).

124 The term “otherwise futile in terms of survival of the infant” is not discussed in the interpretive guidelines. Its clear meaning is that, even with the treatment, the infant would die. But the issue is when the infant is expected to die. See infra text accompanying notes 150-61. To examine whether treatment is “futile” an entire plan of treatment should be considered. See supra note 119.

125 HHS's interpretation of the term “virtually futile” is that treatment is highly unlikely to prevent death in the near future.” Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340, Appendix, 11 8).

126 HHS's interpretation of the term “the treatment itself under such circumstances would be inhumane” is that the “treatment itself involves significant medical contraindications and/or significant pain and suffering for an infant highly unlikely to survive.” Child Abuse Rules, supra note 7 (to be codified at 45 C.F.R. § 1340, Appendix, H 8). The use of the term “inhumane” in the Act “is not intended to suggest that consideration of the humaneness of a particular treatment is not legitimate in any other context; rather it is recognized that it is appropriate for a physician, in the course of reasonable medical judgment, to consider that factor in selecting among effective treatments.” Legislative History, supra note 9, U.S. Code Cong. Ad. News at 2970.

127 The Child Abuse Prevention and Treatment Act of 1974, 42 U.S.C. § 5103 (1984 Supp. 1985), as amended by § 123 of the Child Abuse Amendments of 1984, supra note 7.

128 For the provisions of § 4(b)(2)(k) of the Child Abuse Prevention and Treatment Act, see supra notes 107-113 and accompanying text. Section 4(c)(2) of the Act mandates the Secretary to provide, either directly or through grants or contracts with public or non-profit organizations, for training and technical assistance programs to assist States with meeting the program and procedure requirements of § 4(b)(2)(k).

129 The Child Abuse Prevention and Treatment Act of 1974, 42 U.S.C. § 5102 (1984), as amended by § 123 of the Child Abuse Amendments of 1984, supra note 7. Not more than $1 million of the funds appropriated for any fiscal year under § 5 may be used to carry out § 4 (c)(2). Fora further discussion of clearinghouse activities, see Child Abuse Rules, supra note 7, 50 Fed. Reg. 14,884.

130 interim Model Guidelines for Health Care Providers to Establish Infant Care Review Committee; Notice, 49 Fed. Reg. 48,170 (1984); Model Guidelines for Health Care Providers to Establish Infant Care Review Committee, Notice, 50 Fed. Reg. 14,893 (1985) [hereinafter cited as Model Guidelines].

131 The Model guidelines recommend a core multi-disciplinary membership including a physician, a nurse, administrator, social worker, representative of a disability group, lay member and a member of the facility's medical staff to serve as chairperson; the core membership could be supplemented with, for example, a lawyer or a representative of the clergy.

132 The Model Guidelines recommend that hospitals should provide the ICRC with staff support including legal counsel; the ICRC should recommend procedures to ensure that hospital personnel and patient families are informed of its functions and 24 hour availability; the ICRC should inform itself of all pertinent legal requirements and procedures in state law regarding medical neglect; and the ICRC should maintain confidential records of its deliberations and summaries of specific cases.

133 The Model Guidelines recommend that ICRCs should provide full and current information to hospital personnel and families concerning medical treatment and resources including information about clearinghouses, community and rehabilitation services and counselling, supportive services, and adoption placement counselling.

134 The definitions in the Child Abuse Act and Rules are applicable to the Model Guidelines, and constitute the substance of the basic policy of ICRCs. HHS also recommends careful review of its “interpretive guidelines.” See supra notes 114-126 and accompanying text.

135 That is, when there is a disagreement between the infant's family and physician or between members of the hospital's medical and/or nursing staff; when a preliminary decision to withhold treatment is made in certain categories of cases pre-determined by the ICRC: or when an emergency meeting is requested by a member of the ICRC, hospital staff or parent of the infant. The confidentiality of persons making a request should be preserved. Emergency meetings should be open to affected parties and their interests must be fully considered.

136 See Model Guidelines, supra note 130, 50 Fed. Reg. at 14,895-96.

137 President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forgo Life-Sustaining Treatment (1983).

138 Model Guidelines, supra note 130, 50 Fed. Reg. at 14,893; See, e.g., American Hospital Association, Guidelines: Hospital Committees on Biomedical Ethics (1984); American Hospital Association, Office of Legal and Regulatory Affirs, Legal Issues and Guidance for Hospital Biomedical Ethics Committees: Report of the Adjunct Legal Task Force in Biomedical Ethics (1985) [hereinafter cited as Biomedical Ethics].

139 In re Torres, 357 N.W.2d 2332, 2335-36 (Sup. Ct. Minn. 1984); In re L.H.R., slip o p. No. 41,065 (Ga. Sup. Ct. Oct. 16, 1984).

140 Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417, 434 (1977) (“We take a dim view of any attempt to shift the ultimate decision-making responsibility away from the duly established courts of proper jurisdiction to any committee, panel or group, ad hoc or permanent.“).

141 But the court in In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert, denied 429 U.S. 922 (1976), held that an “ethics committee” comprised of physicians to confirm the medical prognosis was mandated. Accord In re Hamlin, 102 Wash.2d 810, 689 P.2d 1372, 1378 (1984). This is different from a multidisciplinary committee which examines more diverse medical/ legal/ethical issues.

142 The Model Guidelines did not deal with a number of difficult questions which must be faced by any institutional review committee—e.g., the problems of keeping committee records and of committee access to patient records including record confidentiality, length and method of retention of records, parent's access to infant's records; problems of “extended“ confidentiality to include all members of the committee in abiding by hospital rules and state law; inserting an ethics committee recommendation in the patient's record; discoverability of committee minutes and whether they should be open to the public or held in confidence; immunity from liability of members of the committee; boundaries of the subject matter jurisdiction of the committee; and the role of the attorney who may have a conflict of interest if he also represents the hospital. See generally Biomedical Ethics, supra note 138.

143 See supra notes 16-22 and accompanying text.

144 See supra notes 122-126 and accompanying text.

145 Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2928.

146 See supra notes 59-77 and accompanying text.

147 See supra notes 24-25 and accompanying text.

148 See supra notes 33-38 and accompanying text.

149 Id.

150 See supra note 122 and accompanying text. The phrase is gramatically awkward for it suggests an extension in duration of dying. More accurately, it would read “prolong the process of dying.“

151 Child Abuse Proposed Rules, supra note 20, at 48,164, 48,167.

152 The letter from the six principal sponsers cited in the Child Abuse Rules, supra note 7, at 14,879 stated:

153 Child Abuse Rules, supra note 7, at 14,890-91.

154 Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2925.

155 Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2926.

156 Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2924.

157 Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2928 (“Where death is imminent and inevitable, and where medical intervention merely forestalls the inevitable, this committee acknowledges that refraining from medical intervention may be an ethically and legally acceptable course.“).

158 Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2924 (quoting Duff Campbell, Moral and Ethical Dilemmas in the Special Care Nursery, 289 New Eng. J. Med. 890 (1973)).

159 See supra text accompanying notes 39-46.

160 Child Abuse Proposed Rules, supra note 20, at 48,164. The Department specifically avoided using examples of specific diagnoses to elaborate on meaning in the Final Rules because the addition or subtraction of particular complications would change the clinical picture; the medical illustrations given in this essay should also be read with this understanding.

161 See supra note 41. Perhaps a clearer illustration is Menkes, or Kinky Hair Syndrome described in supra note 42. In either case, even when the child reaches coma and, as often occurs, develops pneumonia, he or she would have to be treated with antibiotic medication according to the Child Abuse Rules. See infra notes 163-174 and accompanying text.

162 See supra notes 125-126.

163 See supra note 19 and accompanying text.

164 See supra text accompanying note 121.

165 Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2927.

166 Id.

167 Barber v. Superior Court, 147 Cal. App.3d 1006, 1016, 195 Cal. Rptr. 484, 490 (1983).

168 In re Conroy, 98 N.J. 321, 372, 4 8 6 A.2d 1209, 1236 (1985).

169 Id. See also Lo Dorntrand, Sounding Board: Guiding the Hand that Feeds: Caring for the Demented Elderly, 311 New Eng. J. Med. 402(1984); Paris Fletcher, Infant Doe Regulations and the Absolute Requirement to Use Nourishment and Fluids for the Dying Infant, 11 L. Med. Health Care 210 (1983); Steinbock, Lynn, Children, and Callahan, Must Patients Always be Given Food and Water?, 13 Hastings Cen. Rpt. 17 (Oct. 1983).

170 In re Conroy, 98 N.J. at 372, 486 A.2d at 1236 (1985).

171 See Barber v. Superior Court, 1437 Cal. App. 3d 1006, 195 Cal. Rptr. 484 (1983).

172 Legislative History, supra note 9, 4 U.S. Code Cong. Ad. News at 2927.

173 See R. v. Arthur, unpublished transcript from official court reporters Marten, Meredith Co., Leicester Crown Court, Nov. 3-5, 1981 (an otherwise healthy Down's Syndrome infant was prescribed a narcotic analgesic, dihydrocodeine (DF118), at a dosage of 5 mg, to be administered not less than every 4 hours “as required.” The infant was given water, but no nourishment, and antibiotics were withheld when broncho-pneumonia developed. Dr. Arthur's notes read, “Parents do not wish baby to survive. Nursing care only.” The doctor was charged and acquitted of attempted murder after a long string of eminent doctors stated that what was done was in accordance with general physician practices).

174 In re Quinlan, 70 N J. 10, 4 1, 355 A.2d 647, 6 6 4 (1976), cert, denied, 429 U.S. 922 (1976).

175 HHS is required to undertake an “impact analysis” of the Rules as provided in Exec. Order No. 12,291, 3 C.F.R. 127 (1981), and the Regulatory Flexibility Act, 5 U.S.C. § 601-12 (1985). In addition to aggregate and personal health care costs, there are the procedural, training, and administrative costs to state agencies and health care facilities discussed in the Child Abuse Rules, supra note 7, at 14,887.

176 The great majority of cases (80%) at a tertiary case center are relatively expensive (costing an average of $8,000) but most of the rest cost $20,000 or more and some involve hundreds of thousands of dollars. The average cost is over $20,000. Child Abuse Rules,.supra note 7, 50 Fed. Reg. at 14,886.

177 Child Abuse Rules, supra note 7, at 14,885-87.

178 Child Abuse Rules, supra note 7, at 14,886.

179 HHS states frankly: “We do not have statutory authority and decline to require States to assume full financial responsibility in the maintenance and medical costs of all such disabled children.” Child Abuse Rules, supra note 7, at 14,884.

180 See Stone, Sounding Board: Law's Influence on Medicine and Medical Ethics, 312 New Eng. J. Med. 309, 310 (1985) (“Baby Doe” regulations impel the physician to ignore cost and effectiveness considerations, while other recent federal and state regulations have been aimed at creating incentives to lower health care costs).