Beckman, Sharon L.

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Review of Selective Nontreatment of Handicapped Newborns by Robert Weir

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Boston College Law SchoolDigital Commons @ Boston College Law SchoolBoston College Law School Faculty PapersFebruary 1985Review of Selective Nontreatment of HandicappedNewborns by Robert WeirSharon BeckmanBoston College Law School, sharon.beckman@bc.eduFollow this and additional works at: http://lawdigitalcommons.bc.edu/lsfpPart of the Criminal Law Commons, Criminal Procedure Commons, and the Legal ProfessionCommonsThis Article is brought to you for free and open access by Digital Commons @ Boston College Law School. It has been accepted for inclusion in BostonCollege Law School Faculty Papers by an authorized administrator of Digital Commons @ Boston College Law School. For more information, pleasecontact nick.szydlowski@bc.edu.Recommended CitationSharon Beckman. "Review of Selective Nontreatment of Handicapped Newborns by Robert Weir." Michigan Law Review 83, no.4(1985): 894-899.SELECTIVE NONTREATMENT OF HANDICAPPED NEWBORNS. ByRobert Weir. New York: Oxford University Press. 1984. Pp. viii,292. $27.95.In April 1982, a Down's syndrome baby starved to death in aBloomington, Indiana hospital when his parents refused consent to op-erate on his blocked esophagus.1 Court battles and publicity focusednationwide attention on Bloomington's "Infant Doe," but his fate isnot unique. Each year thousands of newborns are denied life-sus-taining treatment - even food and water - because they are mentallyor physically handicapped. Doctors today can save children who oncewould have died naturally at birth, but when life-saving treatment sus-tains a child with severe mental or physical burdens, doctors and par-ents wonder whether to let nature take its course. The nontreatmentdilemma is one of a society whose scientific development has outgrownthe boundaries of moral consensus. Recently it has become the subjectof ethical, religious, medical, legal, and legislative debate.Theologian Robert Weir's 2 Selective Nontreatment of HandicappedNewborns is a significant contribution to this debate. Weir surveys theviews of pediatricians, lawyers, and ethicists on selective nontreatmentand then proposes his own model for decisionmaking. The book'sunique strength is its interdisciplinary approach - an approach whichlays bare the complexities professionals and scholars must face whenthey peer outside their own disciplines at the broader social context.Ironically, Weir's proposed model ignores or evades many of thesecomplexities, and that is the book's major flaw.Selective Nontreatment of Handicapped Newborns surveys medical,legal, and ethical opinions in the nontreatment debate. In the medicalarea, Weir begins by describing the dynamics of the typical NICU(Newborn Intensive Care Unit) and explaining common birth defectsin lay terms. By informing his readers from the outset of the gravity ofnewborn handicaps and the uncertainties of prognosis, Weir equipsthem to evaluate scholarly debate with common sense.Weir goes on to compare the views of seven pediatricians who havewritten extensively on the question of selective nontreatment. Thoughthe physicians surveyed all agree in principle to "do no harm," theydisagree on the meaning of "harm." Physicians Raymond Duff,1. In re Infant Doe, No. 608204-004A (Monroe County Cir., Apr. 12, 1982) (declaratoryjudgment), affd., Ind. Sup. CL No. 4821540 (sealed), cert. denied sub nom. Infant Doe v. Bloom-ington Hosp., 104 S. Ct. 394 (1983); see generally Note, Withholding Treatment from DefectiveInfants" "Infant Doe" Postmortem, 59 NOTRE DAME L. REv. 224 (1983).2. Robert F. Weir is Professor of Religious Studies at Oklahoma State University, where heteaches courses on biomedical ethics. He is the editor of ETHICAL IssuEs IN DEATH AND DYINO(1977) and DEATH IN LrERATURE (1980).Law and SocietyAnthony Shaw, and John Lorber believe that "do no harm" impliesnontreatment for newborns who lack the prospect of a "minimally ac-ceptable quality of life." Doctors R.B. Zachary and Norman Frostthink that doing no harm involves a detriment-benefit calculus: do nottreat neonates for whom life's detriments outweigh its benefits. Incontrast, Surgeon General C. Everett Koop maintains that doing noharm means treating all nondying infants, since death is the ultimateharm. Weir shows that even within the medical profession there issignificant disagreement concerning who should make nontreatmentdecisions (physicians or parents) and what criteria they should use.Weir does a superficial job of pointing out the ambiguities and in-consistencies in the legal response to the selective nontreatment prob-lem. He briefly explores different views on the legal status of neonates,the distinction between ordinary and extraordinary means of main-taining life, and the significance of direct killing versus letting die. Herecognizes the gap between the criminal law on the books and in prac-tice: though those withholding treatment may be violating state homi-cide or neglect laws, no parent or physician has been successfullyprosecuted for withholding medical treatment from a handicappednewborn. 3 Weir presents the wide-ranging views of legal commenta-tors advocating vigorous prosecution of nontreaters as murderers;4 re-tention of the current system of nonenforcement, with the law on thebooks as deterrent;5 interpretation of the current law to allow circum-scribed areas of legal nontreatment;6 and legalization of nonvoluntaryactive euthanasia in certain cases. 7Weir also presents a scathing criticism of the Reagan administra-tion's recent attempts to resolve the legal dispute. Though the bookwas written before the most recent Department of Health and HumanServices regulations were released, Weir's criticism of the first set of"Baby Doe Regs" still applies: even if the new rules are less vaguethan the old ones, federal executive intervention and surveillance is3. Weir points to the 1981 Mueller case (parents and attending physician were charged withconspiring to commit murder for withholding food from Siamese twin boys, but the charges weredropped for lack of evidence) and the 1975 Edelin case (Massachusetts obstetrician's murderconviction for failing to ventilate an aborted but possibly viable fetus overturned on appeal) assituations where the gap between legal theory and practice occasionally narrows (p. 101).4. Horan, Euthanasia as a Form of Medical Management, in DEATH, DY'NG, AND EUTHA-NASIA 219 (D. Horan & D. Mall eds. 1977).5. Burt, Authorizing Death for Anomalous Newborns, in GENETICS AND THE LAW 435, 447(A. Milunsky & G. Annas eds. 1976).6. A. HOLDER, LEGAL ISSUES IN PEDIATRICS AND ADOLESCENT MEDICINE 114 (1977);Grad, Legal Aspects of Informed Consent, in DECISION MAKING AND THE DEFECTIVE NEW-BORN 443 (C. Swinyard ed. 1978); MacMillan, Birth-Defective Infants: A Standard for Nontreat-ment Decisions, 30 STAN. L. REV. 620 (1978).7. Morris, Proposed Legislation, in INFANTICIDE AND THE VALUE OF LIFE 221-27 (M. Kohled. 1978).February 1985]Michigan Law Reviewnot the best way to handle medical care decisions for handicappednewborns.Weir's legal analysis is limited, though, by his complete reliance onsecondary sources. Unlike his medical survey, which is grounded inreality, Weir's legal discussion lacks any reference to the distinctionscourts are actually making and applying. As a result, his characteriza-tions of court decisions are often inaccurate, superficial, or unrealistic.His suggestion that most courts faced with nontreatment cases haveordered treatment (p. 266) is misleading - the majority of reportedopinions uphold parental refusal of treatment for handicappednewborns.8 His statement that courts have so far protected the bestinterests of handicapped children (p. 140) does not explain how judgesknow what is best. Weir assumes that courts reach objective best in-terest determinations without making comparative quality of life pro-jections: an examination of recent court opinions suggests not onlythat this characterization is untrue, but also that it may be impossible. 9Weir is at his best when surveying the attempts of ethicists andtheologians to put together well-reasoned and consistent positions onselective nontreatment. In an effort to get beyond emotionalism, Weirpresents the advantages and disadvantages of five ethical options:(1) treat all nondying neonates, 10 (2) terminate the lives of selected"nonpersons," 11 (3) defer to parental discretion,12 (4) withhold treat-ment according to quality of life projections, 13 and (5) withhold treat-ment not in the child's best interests.14 While recognizing the intuitiveor practical appeal of these approaches, Weir also points out their va-garies, limitations and inherent subjectivities. Unfortunately, his pref-erence for the "best interests" test leads him to overstate itsadvantages and to overlook its inherent problems: Whose objectivity?How is harm assessed if not relatively? When does the harm outweighthe benefits?8. See In re Infant Doe, Ind. Sup. Ct. No. 4821540 (sealed), cert. denied, 104 S. Ct. 394(1983) (upholding decision to withhold treatment, food, and water from Down's syndrome in-fant); Weber v. Stony Brook Hosp., 467 N.Y.S.2d 685, affd., 60 N.Y.2d 208, 469 N.Y.S.2d 63,456 N.E.2d 1186, cert. denied, 104 S. Ct. 560 (1983) (upholding decision not to treat infant bornwith spina bifida and other complications); In re Phillip B., 92 Cal. App. 3d 796, 156 Cal. Rptr.48 (Cal. Ct. App. 1979) (upholding nontreatment of eleven-year-old Down's Syndrome boy witha correctible heart defect); see also In re P.V.W., 424 So. 2d 1015 (La. 1982); In re Custody of aMinor, 385 Mass. 697 (1982).9. See cases cited at note 8 supra.10. P. RAMSEY, ETHICS AT THE EDGES OF LIFE 192 (1978).11. Tooley, A Defense of Abortion and Infanticide, in THE PROBLEM OF ABORTION 51-91 (J.Feinberg ed. 1973).12. Fletcher, Choices of Life or Death in the Care of Defective Newborns, in SOCIAL RESPON-SIBILITY: JOURNALISM, LAW, AND MEDICINE 77 (L. Hodges ed. 1975).13. McCormick, To Save or Let Die: The Dilemma of Modern Medicine, 229 J. A.M.A. 174(1974).14. Engelhardt, Ethical Issues in Aiding the Death of Young Children, in BENEFICENT EU-THANASIA 185 (M. Kohl ed. 1975).[Vol. 83:894Law and SocietyIn short, Weir recognizes that physicians, lawyers, and ethicistshave been talking past each other on the issue of selective nontreat-ment. His multidisciplinary approach challenges participants in thenontreatment debate to develop standards and procedures that aresensitive to the complexities of individual cases but can be clearly andconsistently applied. Theories must be evaluated in terms of their ap-plicability to actual nontreatment dilemmas. Weir recognizes thisneed, and concludes his book with a proposed model for further dis-cussion. But Weir's model suffers from the same problems of vague-ness, oversimplification, and rigidity which he warns against in thepreceding chapters of the book.Weir proposes that the standard for nontreatment decisions be"best interests of the child." He describes this standard as an objectivebalancing test which allows nontreatment only when the harm oftreatment would outweigh the benefits to the child. His analysis isshallow, though, for in practice, the "best interests" test is as subjec-tive as the "quality of life" projection he condemns. Harm can only bedefined subjectively. The extent of harm is determined by comparingthe handicapped child with a normal child - the quality of life com-parison Weir himself criticizes. The harm/benefit balancing is also in-herently subjective: to say that at a certain point the harm ofcontinued existence outweighs the benefit is the same as saying thatthe life is not worth living.Weir first argues that unlike the "quality of life" test, the "bestinterests" test focuses solely on the interests of the child. However,actual applications of this test in court have included considerations ofthe family's capabilities and interests15 - considerations which Weirhimself recognizes as "tragically necessary" in some cases (p. 215).Weir also argues that the "best interests" test focuses on the infant'smedical prognosis. In reality an infant's handicap may affect his orher strictly medical prognosis, and, as Weir demonstrates in his medi-cal survey, physicians often incorporate quality of life judgments intheir medical recommendations. Weir's "best interests" test, whichallows but does not admit subjective quality of life comparisons, di-verts debate from the fundamental questions of whether or how soci-ety should make such comparisons.Second, Weir labels newborns as "potential persons" with lesserclaims to life than adults. His use of this label to rationalize what thelegal status of fetuses and newborns has been, however, does not an-swer the question of what their status should be. The concept of15. See, eg., Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 469 N.Y.S.2d 63, 456 N.E.2d1186, cert. denied, 104 S. Ct. 560 (1983) (dismissing challenge to nontreatment decision to avoidsubjecting parents to the invasion of privacy and expense of litigation brought by a third party);In re Guardianship of Phillip B., 139 Cal. App. 3d 407, 188 Cal. Rptr. 781, 792 (Cal. Ct. App.1983) (earlier decision to withhold treatment from eleven-year-old Down's Syndrome boy mayhave been in the family's "combined best interests," but was not in the child's best interest).February 1985]Michigan Law Reviewnonpersonhood is no more than post hoc justification of nontreatment(They don't kill persons, do they?). The real question is not what tocall neonates, but whether to treat them. A more helpful way to ap-proach this question might be to think of a continuum of human lifefrom fertilization to brain death and to ask where on that continuumnontreatment is justified.Third, Weir makes a compelling argument that when treatment isnot in the child's best interests there may be no moral difference be-tween actively killing the child (i.e., by injection) and passively lettingthe child die. Where nontreatment would result in prolonged suffering(Le., starvation) a lethal injection is more humane. Weir's argument isweakened by his suggestion that there is a causational difference be-tween killing and letting die. Not all patients allowed to die do so, 16but not all attempts to kill are successful either. When death occurs,the responsibility for it is the same in either case. The fact that deathis marginally more certain from active killing than from passive non-treatment should not be allowed to obscure the similar moral contentof the choices. In addition, Weir suggests that death is only intendedwhen life-prolonging treatment is withheld against the child's best in-terests. This analysis confuses intent with justification. Withholdinglife-prolonging treatment in the child's best interests intentionallycauses death to mitigate harm. The appropriate argument is not thatthe killing is unintentional, but rather, that it is justified.Fourth, Weir proposes that neonatal treatment decisions be madeon the basis of diagnostic categories of diseases. Weir claims that con-genital anomalies can be divided into three groups: (1) untreatablediseases (treatment is futile), (2) treatable diseases which should notbe treated (treatment is not in the infant's best interests), and (3) treat-able diseases which should be treated (treatment is in the infant's bestinterests). Weir concludes that this system can be objectively and con-sistently applied to nontreatment choices. He should know better.Medical diagnoses and prognoses, as Weir warns in previous chap-ters, are tentative and complex. A disease like spina bifida spans thetreatability range. Infants suffering from multiple anomalies may falloutside Weir's black and white categories. To answer, as he does, thattreatment in "gray areas" is optional is to permit subjectivity and in-consistency, to risk maleficence in individual cases, and to leave themost interesting questions unanswered.Weir lists examples of diseases which fall within each category, yethis alignment must change with technological advances. Ironically, he16. In 1976 the New Jersey Supreme Court authorized doctors to remove Karen Ann Quin-Ian from a respirator despite medical predictions that she could not live without it. In re Quin-lan, 70 N.J. 10, 355 A.2d 647 (1976). The comatose woman survived for nine years without therespirator. Karen Ann Quinlan, 31, Dies 9 Years After Coma Decision, N.Y. Times, June 12,1985, at 1, col. 2.[Vol. 83:894Law and Societylists "hypoplastic left ventricle" as an untreatable disease. In 1984doctors in Loma Linda, California kept an infant born with that con-dition alive for a month by replacing her heart with that of a babybaboon. 17 Rigid adherence to Weir's categorical rules would have de-nied the infant, known as Baby Fae, even a chance for life. It wouldalso have frozen medical science, by preventing physicians from everlearning how to treat what was considered to be an untreatabledisease.In addition to being overly rigid, Weir's categories are also subjec-tive. Most writers agree that the agony of children suffering fromLesch Nyhan syndrome (a process of neurological and physiologicaldeterioration characterized by severe mental deficiency and self-muti-lation) should not be prolonged. There is wide disagreement, how-ever, on the treatment of diseases like Down's syndrome and spinabifida. Weir admits that one basis for distinguishing between catego-ries is the degree of mental ("neurological") deficiency - a subjectiveassessment of the projected quality of life.Finally, Weir does a thorough job of discussing the strengths andweaknesses of doctors, parents, committees, and courts as nontreat-ment decisionmakers. Still, his proposed procedure ignores somepractical problems. In Weir's model, parents are the primary deci-sionmakers. Considering that the parents' choice is heavily influencedby the physician's prognosis and recommendation, the independenceof their decision is questionable. Furthermore, though Weir advocatesthe use of hospital committees, under his proposed procedure, com-mittees will rarely review nontreatment decisions on which doctorsand parents agree. Social workers and nurses rarely raise official ap-peals, and it is unlikely that people outside the hospitals will know toobject. Weir's decisionmaking process could be alienating, time-con-suming, and cumbersome (parents to doctors to committees to courts),and therefore inappropriate for NICU cases.Despite the shortcomings of Weir's proposed model and standards,Selective Nontreatment of Handicapped Newborns is recommendedreading for anyone concerned with the nationwide dilemma in theNICUs. Its pages are rich with medical, legal, ethical, and emotionalcomplexity. And its very failings challenge readers to suggest a betterway.17. Baby Girl 'Stable' With Baboon Heart, Chicago Tribune, Oct. 28, 1984, § 1, at 14, col. 1;Doctors Defend Baboon Heart For Baby, Chicago Tribune, Oct. 29, 1984, § 1, at 1, col. 3.February 1985]

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