(as opposed to the far) future, then treatment need not beprovided for the other life-threatening conditions whichtheoretically could be treated. In other words, if the childis going to die shortly anyway from ailment A, it makes nosense (and is not required) to treat ailments B, C, or D. If,on the other hand, the child is terminally ill from ailmentA, but will not die from it for some time, this exceptionprovides no excuse for failing to treat the immediatethreats to life from ailments B, C, or D. 95HHS also interpreted the law to require thatpalliative care, including treatment that goes beyondmedication, 96 must be provided even when lifesavingtreatment would not be effective:If. . .palliative treatment will ameliorate the infant's overallcondition, taking all individual conditions into account,even though it would not ameliorate or correct eachcondition, then this palliative treatment is medicallyindicated. 97The third category in the second exception appliesif treatment would "otherwise be futile in terms <strong>of</strong>the survival <strong>of</strong> the infant." This category is simply a"cover all bases" logical extension <strong>of</strong> the other twocategories, each <strong>of</strong> which describes circumstances inwhich treatment would be futile. The language,however, carefully ties futility to the "survival" <strong>of</strong>the infant, emphasizing that only the inevitability <strong>of</strong>death despite treatment, and not the persistence <strong>of</strong>disability despite treatment, renders the treatmentlegally futile. 98The Virtually Futile and Inhumane ExceptionThe third exception reads:[T]he provision <strong>of</strong> such treatment would be virtually futilein terms <strong>of</strong> the survival <strong>of</strong> the infant and the treatmentitself under such circumstances would be inhumane. 99The exception is phrased in the conjunctive: toremove the maximal treatment mandate, both <strong>of</strong> tworequirements must be met.The first <strong>of</strong> the requirements is that the treatmentbe "virtually futile." The distinction between "futile"as used in the second exception and "virtuallyfutile" as used in the third exception lies in thedegree <strong>of</strong> probability or uncertainty in determiningthe futility <strong>of</strong> the treatment. Under the InterpretativeGuidelines, the term "virtually futile" is understoodto mean that treatment is "highly unlikely toprevent death in the near future." 100The second requirement <strong>of</strong> this third exception isthat the treatment itself be inhumane. The InterpretativeGuidelines state that this is true only in thepresence <strong>of</strong> "significant medical contraindicationsand/or significant pain and suffering for the infantthat clearly outweigh the very slight potentialbenefit <strong>of</strong> the treatment for an infant highly unlikelyto survive." 101The Interpretative Guidelines note that althoughthe initial two exceptions concerned themselveswith the expected results <strong>of</strong> treatment, the thirdexception focused on the process <strong>of</strong> possible treatment:It recognizes that in the exercise <strong>of</strong> reasonable medicaljudgment, there are situations where, although there issome slight chance that the treatment will be beneficial tothe patient (the potential treatment is considered virtuallyfutile, rather than futile), the potential benefit is sooutweighed by negative factors relating to the process <strong>of</strong>the treatment itself that, under the circumstances, it wouldbe inhumane to subject the patient to the treatment. 10295Bopp & Balch, supra note 41, at 112-13. See 45 C.F.R. pt. 1340App. Interpretative Guideline 6 (1987).96At the time it published the Proposed Rule, HHS gave theexample <strong>of</strong> a child with an uncorrectable and life-threateningheart problem who also had an imperforate anus; in such asituation, the absence <strong>of</strong> effective treatment for the heart problemwould not relieve physicians <strong>of</strong> the responsibility <strong>of</strong> providing acolostomy to relieve "the severe pain associated with theintestinal obstruction caused by the imperforate anus." ProposedRule (CAA), supra note 30, at 48164. However, when HHS issuedthe Final Rule, it noted that commenters had "stated that,depending on medical complications, exact prognosis, relationshipsto other conditions, and other factors, the treatmentEnforcement <strong>of</strong> the Child AbuseAmendmentsWhile the 1984 amendments were in the process<strong>of</strong> negotiation under the auspices <strong>of</strong> Senate staff,Senator Kennedy's <strong>of</strong>fice suggested an approach toenforcement that would have "required states, as acondition <strong>of</strong> continued receipt <strong>of</strong> federal child abusefunds, to create an ombudsman program for thepurpose <strong>of</strong> protecting and advocating for the interests<strong>of</strong> newborn infants with life-threatening congensuggested.. .might not necessarily be the treatment that reasonablemedical judgment would decide would be most likely to beeffective. In response to these comments, specific diagnosticexamples have not been included in this discussion. . . ." 45C.F.R. pt. 1340 App. Interpretative Guideline 7 (1987).9745 C.F.R. pt. 1340 App. Interpretative Guideline 7 (1987)(emphasis in original).98See Gerry and Nimz, supra note 66, at 349.9910010110242 U.S.C.A. 5102(3)(C) (West Supp. 1988).45 C.F.R. pt. 1340 App. Interpretative Guideline 8 (1987).45 C.F.R. pt. 1340 App. Interpretative Guideline 9 (1987).Id. (emphasis in original).90
ital impairments and infants or children with specialneeds." 103 This was rejected by the medical groupson the ground that it would lead to undue intrusion.Instead, the American Academy <strong>of</strong> Pediatrics madea counterproposal giving enforcement authority toState child protective services agencies, the frameworkthat was eventually adopted. 104 Under thestatute as enacted, within 1 year after the act becamelaw, such agencies desiring to receive Federal fundswould have to:have in place for the purpose <strong>of</strong> responding to thereporting <strong>of</strong> medical neglect (including instances <strong>of</strong> withholding<strong>of</strong> medically indicated treatment from disabledinfants with life-threatening conditions), procedures orprograms, or both (within the State child protectiveservices system), to provide for (i) coordination andconsultation with individuals designated by and withinappropriate health-care facilities, (ii) prompt notificationby individuals designated by and within appropriatehealth-care facilities <strong>of</strong> cases <strong>of</strong> suspected medical neglect(including instances <strong>of</strong> withholding <strong>of</strong> medically indicatedtreatment from disabled infants with life-threatening conditions),and (iii) authority, under State law, for the Statechild protective service system to pursue any legalremedies, including the authority to initiate legal proceedingsin a court <strong>of</strong> competent jurisdiction, as may benecessary to prevent the withholding <strong>of</strong> medically indicatedtreatment from disabled infants with life-threateningconditions. 105The Principal Sponsors' Statement <strong>of</strong> the Senatesponsors adopted by the conference committeenoted that preexisting law required recipient Stateagencies "to provide certain mechanisms for thereporting <strong>of</strong> abuse or neglect cases. The samereporting mechanisms and standards set forth in theAct and existing regulations would be applicable tothe reporting <strong>of</strong> cases <strong>of</strong> medical neglect. . . ." 106Those preexisting regulations establish a Stateduty to create classes <strong>of</strong> individuals legally requiredto report both known and suspected cases <strong>of</strong> childabuse and neglect, a State duty to permit all otherpersons to submit such reports, 107 and a State dutyto investigate promptly to substantiate the accuracy<strong>of</strong> all such reports. 108The HHS Final Rule implementing the ChildAbuse Amendments is largely built on these require-103Gerry & Nimz, supra note 66, at 344.104Id.10542 U.S.C.A. §51O3(b)(2)(K) (West Supp. 1988).1M H.R. Conf. Rep. No. 1038, 98th Cong., 2d Sess. 41, reprintedin 1984 U.S. Code Cong. & Admin. News 2947, 2970. It madespecial mention <strong>of</strong> the requirement that a guardian ad litem beappointed for children in the course <strong>of</strong> all judicial proceedingsrelating to abuse or neglect. Id.ments. To ensure that health care facilities takeseriously their obligation to designate individualswith the specific responsibility to report known orsuspected withholding <strong>of</strong> medically indicated treatmentand to serve as a point <strong>of</strong> contact andcoordination during investigations, it mandates thatState agencies contact each health care facilityannually to identify the names, titles, and telephonenumbers <strong>of</strong> the designated individuals. 109 It requiresthat States demonstrate, through statute, regulation,or the opinion <strong>of</strong> the State attorney general, thattheir State laws give adequate authority to enablethem to prevent violations <strong>of</strong> the federally definedstandard <strong>of</strong> care. 110Perhaps the most important feature <strong>of</strong> the FinalRule pertaining to enforcement was its emphasis onproviding the mechanisms necessary to ensure anindependent medical evaluation <strong>of</strong> circumstancesthat give rise to a report <strong>of</strong> suspected medicalneglect. As the American Bar Association's ModelProcedures point out: "The judgment <strong>of</strong> physician(s)who specialize in the medical problems and disablingconditions <strong>of</strong> newborn infants is necessary to assesswhether reasonable medical judgment was employedin a decision to withhold medical treatmentor care from a disabled infant." 111 A social workeror other child protective services specialist is rarelyequipped to make an accurate judgment aboutwhether legally required treatment is being withheld.Short <strong>of</strong> outright admissions by medical staff,detection <strong>of</strong> such withholding normally requires aspecialist's knowledge <strong>of</strong> the appropriate level <strong>of</strong>care for the life-threatening condition, so as to judgewhether the treatment being accorded by the healthcare facility falls short <strong>of</strong> it. Furthermore, a judgmentabout what care is appropriate necessarilydepends on an accurate diagnosis <strong>of</strong> the child'scondition. Without the assistance <strong>of</strong> a consultantqualified to make an independent evaluation <strong>of</strong> thatcondition, a child protective services worker wouldin most cases be reduced to relying solely upon theunconfirmed representations <strong>of</strong> the very physicianswhose conduct is the subject <strong>of</strong> investigation. 1120745 C.F.R. §1340.14(c) (1987).08Id. §1340.14(d).45 C.F.R. §1340.15(c)(3) (1987).Id. §1340.15(d)(2)(ii) (1987).Model Procedures, supra note 46, at 229.The analogy in a more "traditional" child abuse case, one inwhich someone reports that a neighboring child has been severelybeaten by her parents, would be a child protective services91
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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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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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arts) to depend upon knowledge of h
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Attachments to Statement of William
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medical facility. Considerations su
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Fund for the Improvement of Postsec
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eports such as Kopelman et al. demo
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Appendix 1EXPOSING OUR CHILDREN, EX
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abilities or functions, they are de
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My principal reason for objecting t
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I derive this hint from the many co
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moral distinction. A girl is a huma
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Appendix 2SURVEY OFSTATE BABY DOE P
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insure the immediate referral of po
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Hospital Liaisons Designated in Mos
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BABY DOE COMPARED WITH REGULAR CPS
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We also asked state CPS offices wha
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Limited information was available o
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one-quarter felt that baby doe case
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Appendix 3INFANT CARE REVIEW COMMIT
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and guidelines concerning the withh
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treated to assure the prompt ^repor
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3. Educating Staff and FamiliesThre
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One of the 10 ethics committees vis
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asphyxiation during the birth proce
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Prospective Review -- Each committe
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OBSERVATIONSThe inspection found th
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May 1, 1989Page 2The Commission adv
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Doe 1 admitted on the record of the
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tion is the basis for failure to tr
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her (much appreciated) vote for thi