Standards for Family Decisions: Replacing Best Interests with Harm Prevention

Michael Benatar and David Benatar (2003) make a persuasive case for allowing parents to decide whether boy babies should be circumcised. Based on the available data, it is hard to argue that circumcision is clearly in a child's best interests. At the same time, it is hard to argue that the procedure is so detrimental to the child's welfare that medical ethics and law should deem it unacceptable. The Benatars argue that even though circumcision cannot be justified under a strict interpretation of the best-interests standard, the intervention falls within the scope of permissible parental choices.

This analysis is relevant not only to parents' decisions about medical interventions for children, it is also relevant to family decisions about life-sustaining treatment for decisionally incapacitated adults. The best-interests standard should give way to an approach that gives families greater discretion to decide about such treatment. The scope of this discretion should be similar to the discretion the Benatars defend for parents in the context of male circumcision.

According to the formal rules now governing decisions for incapable patients, forgoing life-sustaining treatment is permissible when this would promote the patient's previous treatment preferences (the "subjective" approach) or his or her current best interests (the "objective" approach). In fact, however, courts and clinicians permit treatment withholding and withdrawal in a wider range of circumstances. Legal and health decision makers sometimes permit forgoing treatment based on vague and unexamined assertions that this is "what the patient would want." At other times they admit that evidence of the patient's previously expressed wishes is weak or inconclusive, but they invoke the best-interests standard to justify nontreatment when strict application of that standard fails to support such a judgment. Examples of the latter involve patients in the persistent vegetative state (Shapiro et al. 2003).

The formal legal standards governing end-of-life decisions for incapable patients should be revised to allow an expanded range of permissible choices. A family's choice to forgo treatment should be acceptable if it fails to impose clear harm on such patients.

Courts and legislatures have generally been unwilling to adopt explicit language that would take a more permissive approach to nontreatment, partly because they are worried that such an approach would open the door to decisions to forgo care based on unjustified quality-of-life and financial considerations. Yet the current lack of rigor in applying the formal legal standards allows such considerations to influence treatment decisions. At times, this occurs when nontreatment would be questionable under a "clear harm" standard (Dresser 1994).

It would be better to address these problems directly, in a manner similar to the way the Benatars address the problems associated with circumcision. They carefully examine the empirical data and conclude that though a strict best-interests approach does not necessarily support male circumcision, an approach recognizing reasonable parental discretion permits it. They argue that parents should be allowed to make decisions incorporating their cultural and religious values, even when such values promote interests other than those of the individual child. The Benatars also defend limits on parental discretion, however. In their view, performing circumcision on boys without adequate pain relief falls outside the range of acceptable parental choices. So does removal of a girl baby's clitoris and labia. In these fact situations, the parents' values fail to justify the burdens on the child that their decisions would impose.

In decisions about life-sustaining treatment for incompetent patients, legal and clinical authorities should make similar judgments. The challenge is to define which family decisions are permissible and which are "beyond the pale." Many would probably agree that certain decisions fall outside the limits of acceptable family choice. One example would be refusal of oral antibiotics for a patient with mild dementia who retains the ability to enjoy numerous activities and relationships. A closer case would involve...