more than a matter of parent's versus children's rights: response to crutchfield

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More than a Matter of Parent's versus Children's Rights: Response to Crutchfield Author(s): Shirley L. Zimmerman Source: Family Relations, Vol. 30, No. 2 (Apr., 1981), pp. 179-181 Published by: National Council on Family Relations Stable URL: http://www.jstor.org/stable/584126 . Accessed: 18/06/2014 22:25 Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at . http://www.jstor.org/page/info/about/policies/terms.jsp . JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new forms of scholarship. For more information about JSTOR, please contact [email protected]. . National Council on Family Relations is collaborating with JSTOR to digitize, preserve and extend access to Family Relations. http://www.jstor.org This content downloaded from 194.29.185.145 on Wed, 18 Jun 2014 22:25:46 PM All use subject to JSTOR Terms and Conditions

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Page 1: More than a Matter of Parent's versus Children's Rights: Response to Crutchfield

More than a Matter of Parent's versus Children's Rights: Response to CrutchfieldAuthor(s): Shirley L. ZimmermanSource: Family Relations, Vol. 30, No. 2 (Apr., 1981), pp. 179-181Published by: National Council on Family RelationsStable URL: http://www.jstor.org/stable/584126 .

Accessed: 18/06/2014 22:25

Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at .http://www.jstor.org/page/info/about/policies/terms.jsp

.JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range ofcontent in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new formsof scholarship. For more information about JSTOR, please contact [email protected].

.

National Council on Family Relations is collaborating with JSTOR to digitize, preserve and extend access toFamily Relations.

http://www.jstor.org

This content downloaded from 194.29.185.145 on Wed, 18 Jun 2014 22:25:46 PMAll use subject to JSTOR Terms and Conditions

Page 2: More than a Matter of Parent's versus Children's Rights: Response to Crutchfield

More Than a Matter of Parent's Versus Children's Rights: Response to Crutchf ield

SHIRLEY L. ZIMMERMAN*

If Mr. Crutchfield's point is that the courts have been contradictory in their decisions with regard to parents' and children's rights in cases involving the medical treatment of minors, he is obviously correct according to his presentation of the cases he has cited. Criteria for arriving at decisions with regard to the medical treatment of minors apparently have not been applied consistently or uniformly, although Mr. Crutchfield does not provide enough information about the cases for the reader to be able to judge if this in fact is so, or the extent to which the cases are similar. Certainly it would seem that the cases he has cited involve issues consider- ably more complex than those he has polarized as parents' versus children's rights. If the courts have been contradictory in their rulings, it may be that the rulings are reflective of the contradictions inherent in the cases themselves and the absence of satisfactory choices.

To conclude, however, that such contradic- tions have had adverse effects on the "traditional family structure and the relation- ship between parents and children" not only goes beyond the data that Mr. Crutchfield presents, but also begs the question as to what he means by the use of such terms and the historical context in which he uses them.

*Shirley L. Zimmerman is Assistant Professor and Assistant Director, Continuing Education in Social Work, 338 Nolte Center, 315 Pillsbury Drive, S.E., University of Minnesota, Minneapolis, MN 55455.

Key Concepts: Children's rights, costs/benefits of treatment, medical treatment, parental consent, parents rights, parent-child relationships, newborns, spina bifida cystica, birth defects.

(Family Relations, 1981, 30, 179-181.)

In truth, court decisions are not likely to be matters about which most parents and children are preoccupied in their daily interactions with one another. Therefore, it is doubtful that the issue of parents' and children's rights in relation to the medical treatment of minors greatly affects on-going parent/child relationships in most families. If anything, the equality of rights for parents and children may provide the impetus for family members of different ages to learn to accord one another the respect of equals, and thus be better able to arrive at mutually agreed upon decisions, thereby improving the quality of family relationships rather than jeopardizing it. Indeed, it is Mr. Crutchfield's own "obsession" with abortion and steriliza- tion that causes the reader to wonder if these in fact are the issues about which Mr. Crutchfield is exercised rather than the issue of parents' versus children's rights in relation to the medical treatment of minors.

However, the question Mr. Crutchfield raises as to whether the state may interfere with parental control of children insofar as medical treatment is concerned, and if so, under what conditions, requires closer scrutiny. Because of present day preoccupa- tion with abortion and the emotion surround- ing it, I should like to direct my comments instead to some of the considerations involved in decisions regarding the medical treatment of severely defective newborns, such as those born with spina bifida cystica (Heymann & Holtz, 1975). Spina bifida cystica is caused by a failure of the vertabrae-the bony part of the spine-to fully develop when the fetus is in the mother's womb. As a result of this spinal malformation, parts of the spinal cord and the membranes that enclose it

April 1981 FAMILY RELATIONS 179

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Page 3: More than a Matter of Parent's versus Children's Rights: Response to Crutchfield

protrude from the surface of the body without the protective covering of the vertabrae.

The disabilities that infants born with spina bifida cystica are likely to suffer vary widely. All are likely to suffer from varying degrees of paralysis of the lower extremities, making walking without assistance impossible in most cases. Children born with this affliction also are likely to suffer from bladder and bowel incontinence throughout their lives. Often, afflicted children may suffer from mental retardation as well, although the severity of the retardation varies from case to case. In the most severe cases, the structure of the body is so badly deformed that it may be described as pretzel-like.

The prognosis for these infants varies according to the extent of their disabilities and the intensity of the medical treatment and the quality of the therapy they receive. At the present time, doctors are in substantial disagreement about the ability to predict at the time of birth the extent of the disability such children will suffer, and therefore, to determine the course of treatment that should be followed for them. There does appear to be some consensus, however, that the higher the lesion on the back, the more severe the disability. If left untreated, most of the infants born with spina bifida cystica would die within the first year of life. In the past, nearly all infants born with this affliction did, in fact, die, but recent advances in medical technology and consequent interest in their care have improved their chances for survival dramatically. Improved survival rates, how- ever, do not necessarily translate themselves into vast improvements in the quality of their lives because even with treatment, survivors still are likely to suffer from considerable physical impairment, and in some cases, from mental retardation also (Darling, 1979).

The treatment accorded spina bifida cystica infants is determined by decision makers at three levels: (a) by legislators who decide on resource allocations for medical care in general; (b) by the medical community which establishes the criteria for determining what constitutes "reasonable and ordinary care" for any given condition; and (c) by individual parents and doctors who together determine the course of treatment for a specific child

(Heymann & Holtz, 1975). Involved in such decisions are three sets of interests: (a) the interests of the infant in terms of its well-being; (b) the interests of society in terms of available resources and values and beliefs that are commonly shared and deeply held; and (c) the interests of the family in terms of the social, psychological, and economic costs of the infant's aftercare (Boggs, 1979), as well as its wishes and desires with respect to the infant's treatment. An overarching consideration is the infant's age because she or he obviously can neither give nor withhold consent for treatment (Heymann & Holtz, 1975).

In terms of the infant's interests and well- being, factors that can be expected to be considered in decisions pertaining to the course of treatment for the child include: (a) the likely success of treatment in extending life or reducing pain; (b) the risk of death or pain associated with the treatment; and (c) the likely effects of the treatment or its absence on other aspects of the infant's quality of life. Guiding such decisions are medical judgments with regard to what constitutes reasonable and sensible treat- ment and medical priorities regarding the preservation of life.

In most cases, the assumption is that life is better than death. However, the lifetime costs for the aftercare of infants born with spina bifida cystica are likely to be substantial. For society, revenues raised from taxes not only place a limit on the amount of money that can be allocated and expended for medical purposes in general, but because such funds are limited, money spent on the treatment of defective newborns means that it is diverted from other needed programs, thus represent- ing foregone opportunities (Heymann & Holtz, 1975). Furthermore, the benefits to society for such expenditures are not entirely clear because returns on the investment are likely to be poor. Such expenditures also have implications for expenditures in other areas, such as income maintenance and a range of social and other services in the community.

For families, the lifetime costs of the aftercare of severely defective infants are likely to be particularly heavy (Boggs, 1979). Such costs may include expenditures for

180 FAMILY RELATIONS April 1981

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Page 4: More than a Matter of Parent's versus Children's Rights: Response to Crutchfield

medical care, special equipment, home remodeling, respite care, special transporta- tion services, and special training; the disrup- tion of employment, foregone job opportuni- ties and the relinquishment of career aspira- tions; the disruption of family life and the personal lives of individual family members; and the psychological costs of guilt, anxiety, shame, and despair, depending on the family's perceptions and definition of its situation. Complicating factors may include the parents' ages and marital status; the family's health and socio-economic status, and ethnic and religious background; the number of other children in the family; the number of other children born with defects; the kind of community in which the family lives in terms of the supports it provides (Zimmerman, 1979) as well as the nature of the family's network of relatives and friends (Darling, 1979), to name a few. Some doctors in weighing the benefits of life to afflicted infants, who in most cases will never be cured of their disabilities, against the burdens their survival will likely create for them, their families, and society, feel justified in withholding treatment from the infant (Hey- mann & Holtz, 1975). The courts in ruling on such cases, however, have tended to disregard these burdens, largely because of values concerning personhood, community, affiliation, and altruism. Thus, it is legislators and families who are left to grapple with the social, psychological, and economic implica- tions of the medical treatment of severely defective newborns.

Clearly, the issue of parents' versus children's rights in relation to the medical treatment of minors is complicated by numerous ambiguities and contradictions

(Farber, 1979) that cannot be examined adequately within the confines of this response, but that cannot be wished away by a simple declaration asserting the superiority of parental rights in relation to those of their children (Mencher, 1967). Rather, it is reflective and illustrative of the complexities of the age in which we live, one in which parents and children are required to be respectful of the rights of each other as people, and out of such respect, fashion relationships that are conducive to individual and family growth.

REFERENCES

Boggs, E. M. Economic factors in family care. In R. H. Bruininks & G. Krantz (Eds.), Family care of develop- mentally disabled members: Conference proceedings. Minneapolis: University of Minnesota, 1979.

Darling, R. B. Families against society: A study of reactions to children with birth defects. Beverly Hills: Sage Publications, 1979.

Farber, B. Sociological ambivalence and family care: The individual proposes and society disposes. In R. H. Bruininks & G. Krantz (Eds.), Family care of develop- mentally disabled members: Conference proceedings. Minneapolis: University of Minnesota, 1979.

Heymann, P. & Holtz, S. The severely defective newborn: The dilemma and the decision process. Public Policy, 1975, 23, 381-417.

Mencher, S. Social authority and the family. Journal of Marriage and the Family, 1967, 29, 164-192.

Zimmerman, S. L. Families of the developmentally disabled: Implications for research and the planning and provision of services. In R. H. Bruininks & G. Krantz (Eds.), Family care of developmentally disabled members: Conference proceedings. Minneapolis: Uni- versity of Minnesota, 1979.

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