Baby Doe and the Search for a Quality Life

Powell, Thomas H.; Hecimovic, Anton

doi:10.1177/001440298405100407

Cited by 12 publications

(4 citation statements)

References 23 publications

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“…The concept that quality of life is the product of natural endowment (NE) and the sum of contributions of home and society (H + S) was proposed to assist medical personnel in determining whether to provide lifesaving medical intervention to infants born with myelomeningocele. This proposed quantification of quality of life has triggered strong debate (Miller, 1984;Orelove & Sobsey, 1991;Powell & Hecimovic, 1985). Coulter's (1990) caution regarding this attempt to formulate a quality-of-life construct applies to other constructs of quality of life: "Even if this formula were conceptually sound, there is no evidence that we have methodologically valid means for measuring its components" (p. 62).…”

Section: Quantitative Versus Qualitativementioning

confidence: 99%

Quality of Life as Context for Planning and Evaluation of Services for People with Disabilities

Dennis

Giangreco

Cloninger

1993

Exceptional Children

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Quality of life has become a dominant theme in planning and evaluating services for people with disabilities. This article reviews definitions of quality of life, explores the concept from the perspective of the optimal theory of personal well-being, and surveys the research on the concept and its implications for planning and evaluating services. This article explores the subjective nature of life quality, particularly for people with disabilities, and relates the concept to both cultural norms and universal human values and needs. Each person experiences life, and disability, in unique ways. Practitioners need to consider quality-of-life issues as a context in planning and evaluating quality services.

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Section: Quantitative Versus Qualitativementioning

confidence: 99%

Quality of Life as Context for Planning and Evaluation of Services for People with Disabilities

Dennis

Giangreco

Cloninger

1993

Exceptional Children

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“…The improvement in the quality of life for persons with severe handicaps has been discussed by Powell and Hecimovic (1985). These improvements should be shared with parents and professionals in medicine, law, social welfare, and education so that these individuals realize that persons who are disabled can have a quality of life.…”

Section: Discussionmentioning

confidence: 99%

“…Some parents who consider the welfare of other individuals in the family and the pressures of having a child with disabil ities in the family may conclude that the sacrifices required of themselves and other family members are not worth making when compared with the benefits of raising a child who is handicapped (Duff & Campbell, 1979). Powell and Hecimovic (1985) presented evidence that the quality of life for persons with severe disabilities has advanced in the areas of education, social relationships, residential living, access, and tech nology. These advances, although probably not widely understood or accepted by others, have greatly im proved the lives of infants who are born with disabilities today compared with handicapped children born 10 years ago.…”

Section: Selective Abortionmentioning

confidence: 99%

Selective Abortion and the Diagnosis of Fetal Damage: Issues and Concerns

Cohen

1986

Journal of the Association for Persons with Severe Handicaps

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This article discusses some of the issues involved in selective abortion of fetuses that may be handicapped or that have the potential of being handicapped. Computer searches of the Educational Resources Information Cen ter (ERIC) and West's Law data bases yielded the sources for this article. A review of the legal issues relating to selective abortion is presented and, in order to place selective abortion in context, issues relating to abortion are reviewed. Next, issues relating to selective abortion are examined and suggestions for further dis cussion are made.With rapid advances in medical technology, the num ber of chromosomal and metabolic disorders that can be identified before birth with minimal risk to the mother and fetus has increased. The use of techniques which assist in the early identification of birth disorders, such as amniocentesis, ultrasonography, amniography, fetoscopy, and the screening of maternal a-fetoprotein levels in order to determine the presence of neural tube defects, is common (J. G. .This article attempts to bring together the available literature and discuss some of the critical issues involved in selective abortion. Few writers have examined the issue of selective abortion, that is, abortion following the diagnosis of fetal damage. Computer searches of the ERIC and West's Law data bases, followed by manual searches, identified articles on this topic. The purpose of this article is to focus attention on this issue and to provide a basis for future discussion and deliberation by persons interested in this issue. Definition of "Viability"The point at which viability is determined is one of the central issues in a discussion of abortion and selec tive abortion. Therefore, this article will begin with an overview of the issue of viability.With advances in medicine, fetuses that were once

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“…Asserting that the quality of life &dquo;cannot bye < viewed solely from a medical perspective Powell and Hecimovic (1985) have analyzed the concept and redefined it in terms of six distinct dimensions: educability, relationships, residence, access, technology, and medicine, noting that only the last can be considered to be within a medical authority's domain. As reported in the Federal Register in April, 1985, the Office of Human Development Services received more than 116,000 letters from the general public in response to the proposed Baby Doe Rule and the Child Abuse Amendments of 1984.…”

Section: Quality Of Lifementioning

confidence: 99%

Child Abuse Amendments of 1984: What Are the Issues?

Black

1987

Journal of the Division for Early Childhood

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With the passing of the Child Abuse Amendments of 1984, the United States government has created a framework for legal intervention into controversial Baby Doe cases where handicapped newborns are denied medical treatment, including hydration and nutrition. Both sides of four issues in this controversy are discussed: (a) the parents' right, after consulting with their physicians, to make the final decision to treat or to forego treatment for their disabled infants; (b) the omission of the notion of "quality of life" from the law; (c) the excessive financial burdens imposed as a result of decisions to treat; and (d) the role of the Infant Care Review Committees. In view of the evidence, the author supports the move toward federal intervention.The recently well-publicized cases of Baby Doe and Baby Jane Doe represent a relatively small group of disabled American newborns with serious but surgically correctable life-threatening conditions whose parents, usually with physicians' counsel and support, refuse permission for the treatment necessary to sustain their lives.Public attention has centered on a special group of cases, infants who have both a correctable life-threatening defect and a permanent, irremediable handicap that is not life-threatening, such as exists in Down's syndrome and Spina bifida cases. As public awareness has grown, so has the controversy. On one side, grassroot medical, legal, and political conservatives have argued for the sanctity of the family and the parents' right to make life or death decisions for their disabled infants. On the other, diverse child advocate groups (e.g., special educators) have championed the cause of these seriously ill newborns. Within the last few years, the federal executive and legislative branches have become involved. Executive rules and directives based on the Child Abuse Amendments of 1984 now make the withholding of treatment from some disabled newborns illegal (Federal Register, 1985). These amendments, which include specific guidelines as to what constitutes medical neglect of disabled newborns, also provide a model for the creation of infant care review committees (ICRC).The new amendments, in conjunction with the nationwide trend toward lowering the legal entrance age of handicapped children into the public schools, may have farreaching effects on the thrust of special education programs. Special educators at all levels of instruction need to be informed of the recently published facts and opinions germane to the issues that preceded the passing of these statutes. Early childhood special educators will be affected by the increased number of those handicapped neonates who may, as a result of the statute's implementation, live beyond projected life spans to enroll in educational programs. The purpose of

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Baby Doe and the Search for a Quality Life

Cited by 12 publications

References 23 publications

Quality of Life as Context for Planning and Evaluation of Services for People with Disabilities

Quality of Life as Context for Planning and Evaluation of Services for People with Disabilities

Selective Abortion and the Diagnosis of Fetal Damage: Issues and Concerns

Child Abuse Amendments of 1984: What Are the Issues?

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