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One of the 10 ethics committees visited reviews casesretrospectively on a selective basis. The hospital itselfconducts monthly mortality conferences to review everypatient death from a medical point of view. If the death isbased on withholding or withdrawal of medical treatment, itis referred to the ethics committee for further review.Review results are sometimes used for educational purposeswithin the hospital*A second ethics committee indicated that it plans to beginretrospective case review in the near future. Severalcommittees mentioned that some cases are reviewedretrospectively by other committees as part of ongoingquality assurance activities within their respectivehospitals.• 8 -198
COMMITTEE CASE REVIEW EXPERIENCEAmong them, the hospital committees visited estimate theyhave reviewed between 20 and 36 potential baby doe casessince the Federal regulations went into effect in October1985. post committees do not keep individual case recordsand were unable to provide precise information on the numbersof cases reviewed.Advising physicians and families on the most appropriatecourse of treatment for severely disabled infants with lifethreateningconditions is a responsibility which is takenseriously by hospital ethics committees. Members are mindfulof their responsibilities and strive to apply the baby doelegal requirements while considering the medical, ethical andmoral issues associated with each individual situation.Parental consent is required in order for a hospital toperform surgery or withhold or withdraw treatment.Committees Indicated that parents of some severely disabledinfants initially refuse consent for surgery or lifesustainingtreatment, while others demand that treatment becontinued even when the treating physicians and ethicscommittees agree that continued treatment would be futile andpainful, and would merely prolong the infant's dyingCommittee recommendations are advisory only rather thanbinding on the affected parties. Committee members noted,however, that most situations involving initial differencesof opinion have been resolved in accordance with baby doerequirements, and few cases have been reported to CPS.Eight hospitals have not reported any cases to CPS* Theyindicated that all cases reviewed have been resolvedinformally. If a case could not be resolved within thehospital setting, they indicated that they would seek CPSintervention.Two hospitals have made three reports. In these three cases,parents refused consent for life-saving treatment or surgeryrecommended by the hospital. CPS Intervention led tocontinuation of treatment. Two of the affected infants wereliving at the time or our fieldwork.While hospital committees declined to discuss the details ofindividual cases reviewed, several respondents commentedgenerally on the types of cases most often referred forreview:oThe types of cases most frequently reviewed by committeesinvolve low birthweight (less than 2 pounds), extensiveinternal bleeding associated with premature birth, and- 9 -199
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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
Page 160 and 161: Chapter 14Findings and Recommendati
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Page 166 and 167: A Dissenting View on the Report Med
Page 168 and 169: arts) to depend upon knowledge of h
Page 170 and 171: Attachments to Statement of William
Page 172 and 173: medical facility. Considerations su
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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 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 218 and 219: May 1, 1989Page 2The Commission adv
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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