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May 1, 1989Page 2The Commission advocates an extreme view of the Child AbuseAmendments and related regulations, one that would requiremaintenance of biologic existence in virtually all infantsother than the comatose and the dying. It fails toacknowledge the carefully crafted language which reflected arejection of that view by many groups and individuals whocare for and about infants. It resurrects a position whichwould not take into account an infant's interests, nor allowany person or group or court to make any judgements about thecare of a sick or suffering infant. This view is not onlycontrary to the spirit and language of the law andregulations, but contrary to a clear trend in American lawand opinion which demands that handicapped and critically illinfants, like all patients, be entitled to have decisionsregarding life-sustaining treatment made in their bestinterest.The Commission advocates a renewal of intrusion of federalauthority into complex decision making at the bedside. Thisview is contrary to federal appellate and US Supreme Courtopinion, as well as public opinion. It resurrects anapproach which was implemented in the infamous "Baby Doehotline" and "Baby Doe squads" that failed to achieve itsobjective. It was an approach which failed to identifyserious errors at a time when they were common, and whichfalsely labelled excellent clinical care as neglect, drivinginfants and parents fearfully out of intensive care units toavoid onrushing and intrusive federal authorities.Furthermore, the most recent Inspector General's survey ofBaby Doe programs release just last year showed that theproblem of undertreatment is being appropriately addressed.In commenting on that report, Surgeon General Koop said that,"It is reassuring to learn...that each state has accepted itsresponsibility and fully implemented the 1984 amendments tothe Child Abuse Prevention and Treatment Act." Dr. Koop wenton to say that the report indicates that the "guidelines andprocedures are working appropriately."All evidence points to the fact that the law is working.The Academy continues to support the use of infant carereview committees as an important mechanism to assistphysicians and parent in making these difficult decisions.The Academy also continues to educate and train ourpediatrician members about the use of committees and othermethods of aiding children with disabilities and theirparents.Sincerely,Donald W. Schiff,President206
Statement of Commissioner Robert A.DestroIt should not have been this difficult. The point,after all, is a fairly simple one: that it is both illegaland immoral to deny necessary medical care to anychild, especially one with a disability. That it hastaken the Commission nearly 5 years to complete itsreport and recommendations bears witness to theformidable political and practical hurdles which hadto be overcome. But overcome they were, and as theChairman of the subcommittee responsible for producingand editing the several drafts of the reportand recommendations, I am both pleased and gratefulto the Commission and its staff for the hard work,late nights, and commitment to seeing this projectthrough to completion.* I write separately tosummarize some of the practical and political issuesthe Commission had to overcome in the course of itsdeliberations, and to suggest a wider context inwhich this report and its recommendations should beviewed.Defining the Problem: Discrimination,Medical Ethics and Family PrivacyThe primary conceptual and political problemfaced by the Commission has been to distinguishamong those issues which are correctly within therealm of antidiscrimination and child neglect laws,those which are properly matters of medical judgmentor ethics, and those which are matters ofparental choice. Though the dividing line which* Special thanks go to my friend and colleague CommissionerEsther Gonzales-Arroyo Buckley, for her work as the othermember of the subcommittee, and to my former confidentialassistant, Deborah Lawrence (now of Fort Wayne, Indiana),whose hard work and persistence were largely responsible for thecompletion of the hearing record. It is also appropriate torecognize the contribution to the finished product made by theseparates these spheres is far from clear, it is quitereal; and the need to make careful distinctions iscritical.It goes without saying, for example, that neitherchild abuse and neglect nor discrimination on thebasis of disability are "private" matters. That aparent's decision to neglect a child's medical needs iseither influenced by or acquiesced in by a physicianlikewise does not transmute the issue of neglect intoone of medical judgment, ethics, or confidentiality.The proper (and limited) concern of law is theprevention and punishment of antisocial activity.Medical neglect (that is, the denial of medicallyindicated treatment) of the physically or mentallydisabled is, by definition, antisocial, and the properconcern of the law.The question addressed in this report is simplystated: is it permissible under either State or Federallaw to deny necessary medical care to any person onthe grounds that a disability or other immutablecharacteristic such as race, sex or ethnicity makesthat person an unfit subject for treatment? Phrasedanother way, the question is: whether medicallyindicated (i.e. necessary) treatment for a givencondition becomes any less "necessary" when thepatient has a disability?That this is the issue cannot be doubted. Thephysician who treated Bloomington Indiana's BabyCommission's late Chairman, and the original chair of thesubcommittee, Clarence M. Pendleton, Jr. Though Penny and Ihad many a late-night disagreement over the what we might findin the course of additional hearings, he supported additionalfactfinding. In addition, he also resisted internal and externalpolitical attempts to kill the project outright.207
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MedicalDiscriminationAgainstChildre
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idments • Section 504 • Medical
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LETTER OF TRANSMITTALThe PresidentT
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CONTENTSExecutive Summary 11. Funda
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12. The Performance of the Federal
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• The role of economic considerat
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disabilities at the time that the c
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generated by health care personnel
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ing how they would obtain medical r
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The Commission sees several advanta
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acquiescence in the death or elimin
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Services of the Department of Healt
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Chapter 1Fundamental Rights: An Int
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Carlton Johnson was evaluated by a
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"that Mr. and Mrs. Doe, after havin
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American Coalition of Citizens with
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Chapter 2The Physician-Parent Relat
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In all but a few cases, the parents
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the family, and the family went alo
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Chapter 3The Role of Quality of Lif
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transition from education to employ
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tion programs can become productive
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unsuccessful efforts of a private a
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[S]ince I have been at Children's M
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Another survey by Siperstein, Wolra
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of life with a child who is disable
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Chapter 4The Role of Economic Consi
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©TABLE 4.1Pediatricians' Responses
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• The differences in average cost
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FIGURE 4.1Comparative Costs of Inst
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Chapter 5State LawWhat is the law g
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Like all authority. . .parental aut
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This decision, however, was promptl
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No otherwise qualified handicapped
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Bloomington's Infant Doe in April 1
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ONONTABLE 6.1Physician's assessment
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Essentially, HHS interpreted the su
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Final 504 RuleHHS received nearly 1
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lifesaving operations to close her
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any further implementation of the F
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handicapped infants might violate S
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the provision does cover discrimina
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of the infants. The review mechanis
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Under the law, the Department of He
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that "the phrase 'or holds the reas
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allows an infant to be denied nutri
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avoid the explicit standards set fo
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(as opposed to the far) future, the
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It was recognized, therefore, that
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als with the particular disability
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cared for. They are thus different,
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medical advice. Given the magnitude
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tions at all regarding the subject
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strates that there is a grave dange
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Disincentives to Whistle BlowingDen
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Using a cumulative scaling procedur
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Of that 300 we targeted, approximat
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Conclusionphysicians set forth in t
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taking place when a report of suspe
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where the parents say "the child fe
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Nevertheless, the organization oppo
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Chapter 11The Role and Performance
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a member of the American Academy of
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possibilities that "will be most li
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clearly indicate that the committee
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Reviewing the first 30 months of th
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Webster's defines "suspected" as "t
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Chapter 12The Performance of the Fe
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The baby's doctor, E. Laurence Hode
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to achieve a reasonable life". . .w
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an unmarried mother receiving welfa
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can be sure all appropriate actions
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inquiries to determine whether they
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Chapter 13The Protection and Advoca
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authority to conduct retrospective
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facility that uses such a committee
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Chapter 14Findings and Recommendati
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as the coordination and development
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in the advisory process who is conc
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A Dissenting View on the Report Med
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Page 170 and 171: Attachments to Statement of William
Page 172 and 173: medical facility. Considerations su
Page 174 and 175: Fund for the Improvement of Postsec
Page 176 and 177: eports such as Kopelman et al. demo
Page 178 and 179: Appendix 1EXPOSING OUR CHILDREN, EX
Page 180 and 181: abilities or functions, they are de
Page 182 and 183: My principal reason for objecting t
Page 184 and 185: I derive this hint from the many co
Page 186 and 187: moral distinction. A girl is a huma
Page 188 and 189: Appendix 2SURVEY OFSTATE BABY DOE P
Page 190 and 191: insure the immediate referral of po
Page 192 and 193: Hospital Liaisons Designated in Mos
Page 194 and 195: BABY DOE COMPARED WITH REGULAR CPS
Page 196 and 197: We also asked state CPS offices wha
Page 198 and 199: Limited information was available o
Page 200 and 201: one-quarter felt that baby doe case
Page 202 and 203: Appendix 3INFANT CARE REVIEW COMMIT
Page 204 and 205: and guidelines concerning the withh
Page 206 and 207: treated to assure the prompt ^repor
Page 208 and 209: 3. Educating Staff and FamiliesThre
Page 210 and 211: One of the 10 ethics committees vis
Page 212 and 213: asphyxiation during the birth proce
Page 214 and 215: Prospective Review -- Each committe
Page 216 and 217: OBSERVATIONSThe inspection found th
Page 220 and 221: Doe 1 admitted on the record of the
Page 222 and 223: tion is the basis for failure to tr
Page 224: her (much appreciated) vote for thi
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