PDF1 - University of Maryland School of Law

Chapter 9The Incidence of Discriminatory Denial ofMedical TreatmentHow frequently in contemporary America arepeople denied medical treatment for treatable lifethreateningconditions, or life-preserving food andfluids, because they have disabilities? The answer tothis question is of great importance. If discriminatorydenials of treatment in general occur only inisolated and unusual instances, the need for anygovernment intervention in treatment decisionsmight be questioned, especially the need for aFederal role. If it were the case that there was asignificant incidence of such discrimination beforethe effective date of the Child Abuse Amendmeu*'-of 1984, 1 but that since then the incidence hadgreatly shrunk, that might imply that the amenoments themselves are adequate to address the sitition and that they are being effectively enforce'Such conclusions would suggest that there is lit sneed for a change in the status quo.Suppose, on the other hand, the evidence sb'" vsthat there has been a significantly high incidenc ofmedical discrimination against children with disabilitiesthat is part of a much larger pattern of medicalcare discrimination against people with disabilitiesgenerally, and that this incidence largely persistsdespite 3 years of experience under the Child Abuse142 U.S.C.A. §§5101-5103 (West Supp. 1988). The 1984 law,discussed in detail in chap. 7, established standards of treatmentfor children with disabilities in all States that receive Federalfunds for their child abuse and neglect programs.3Nor is it usually reported to others within the hospital, such asmembers of an infant care review committee. A study of suchcommittees in 10 hospitals in eight cities found that only one"requires [committee] review of any case where withdrawal oflife support is proposed." Office of Inspector General, Departmentof Health and Human Services, Infant Care ReviewCommittees Under the Baby Doe Program ii (1987). The othernine review such cases only when there is disagreement betweenthe treating physician and parents or "the treating physicianAmendments. Such a conclusion would suggest aneed to examine critically the current approach toimplementing the amendments with a view to seeinghow it might be improved and whether otherinstruments are needed to protect the medicaltreatment rights of children with disabilities.Difficulties of EstimationAny attempt to quantify denial of treatment, nowor in the recent past, is subject to inherent limitations.When health care personnel and parents agreeto reject a course of lifesaving medical treatment fora child with a disability, they typically do notannounce it to the world at large or report it in thoseterms to statisticians or public officials. 2 There havebeen isolated instances of treatment denials beingpublicly announced in medical journal articles,including one article that reported decisions towithhold lifesaving treatment from a number ofnewborn children with disabilities at Yale-NewHaven Hospital in the early 1970s 3 and anotherdescribing similar decisions at Children's Hospital ofOklahoma in the 1980s. 4 The physicians whoauthored these articles were crusading for openacceptance of denial of treatment practices by theirfellow professionals. 5requests advice." Id. Nor may incidence easily be estimated basedon records from retrospective reviews of such instances. Onlytwo of the committees studied have or are planning to haveretrospective review of "selected" cases, although patient deathsmay be reviewed by other quality assurance committees. Id. at 5.3Duff & Campbell, Moral and Ethical Dilemmas in the Special-Care Nursery, 289 New Eng. J. Med. 890 (1973).4Gross, Cox, Tatyrek, Pollay & Barnes, Early Management andDecision Making for the Treatment of Myelomeningocele, 72Pediatrics 450 (1983).5For example, the Oklahoma health care personnel stated:"[D]ocumented suffering. . .is not only reduced but prevented, ifone is persuaded that death is preferable to life under certain103