Academic journal article The Hastings Center Report

Health Care Decisionmaking by Children - Is It in Their Best Interest?

Academic journal article The Hastings Center Report

Health Care Decisionmaking by Children - Is It in Their Best Interest?

Article excerpt

Some bioethicists have argued for a role for the family in the patient's health care decisionmaking, even when that patient is a competent adult.[1] Such a move challenges most of American bioethics, which holds patient autonomy as the primary ethical principle in health care decisionmaking. Ironically, there is an opposite movement in pediatrics, where ethicists and policymakers are seeking to exclude parents from many of their children's health care decisions.[2]

In pediatrics"the doctor-patient relationship traditionally has included three parties: the physician, the child, and his or her parents. Parents were not merely surrogate decisionmakers on the grounds of child incompetence, but rather, parents were believed to have both a right and a responsibility to partake in their child's medical decisions.[3] In this paper I will examine the evolving position regarding the role of the child in the decisionmaking process as advocated by the American Academy of Pediatrics (AAP). I will offer both moral and pragmatic arguments why I believe this position is misguided.

Recommendations of the American Academy of Pediatrics

In 1995, the AAP published its recommendations for the role of children in health care decisionmaking. The AAP recommended that the child's voice be given greater weight as the child matured. The AAP categorized children as (1) those who lack decisionmaking capacity; (2) those with a developing capacity; and (3) those who have decisionmaking capacity for health care decisions.[4]

For children who lack decisionmaking capacity, the AAP recommended that their parents should make decisions unless their decisions are abusive or neglectful. When children have developing decisionmaking capacity, the physician should seek parental permission and the child's assent. In many cases, the child's dissent should be binding, or at minimum, the physician should seek third-party mediation for parent-child disagreement. Although the child who dissents to life-saving care can be overruled, attempts should be made to persuade the child to assent for "coercion in diagnosis or treatment is a last resort" (p. 316). When children have decisionmaking capacity, the AAP concluded that the children should give informed consent for themselves and their parents should be viewed as consultants.

A major problem with the AAP recommendations is that it assumes decisionmaking capacity can be defined and measured, although the AAP offers no guidance as to what this definition is or how to test for it. Instead, the AAP recommend individual assessment of decisionmaking capacity in each case. However, since there are no criteria on which to base maturity or decisionmaking capacity, the decision of whether to respect a child's decision is dependent upon the judgment of the particular pediatrician--a judgment he or she has no training to make.

My main concern with the AAP recommendations, however, is what should be done when parents and children disagree on health care decisions: according to the AAP, if there is parental-child disagreement and the child is judged to have decisionmaking authority, the child's decision should be binding. If the child has developing capacity, various mechanisms to resolve the conflict should be attempted. They propose:

short term counseling or psychiatric

consultation for patient

and/or family, "case management"

or similar multidisciplinary conference(s),

and/or consultation

with individuals trained in clinical

ethics or a hospital based ethics

committee. In rare cases of refractory

disagreement, formal legal

adjudication may be necessary. (p.

316

I will ignore the difficulties in determining whether a minor has decisionmaking capacity and assume that some minors are competent to make at least some health care decisions. If autonomy is based solely on competency, then competent children should have decisionmaking autonomy in the health care setting. …

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