Death Panels, of a Different Sort

I just came across some cases that I think our readers might find interesting (though tragic). Here’s the common fact pattern (with some minor variations among the cases): A small child is suffering from extreme medical problems, and doctors believe there is no hope for improvement. The parents have lost their parental rights, because they were found to be abusive or neglectful; the state has custody.

A decision needs to be made about whether the child should be removed from life support, or have a “do not resuscitate” order entered. Unlike with adults or even older children, where one might ask what they want, or what they would have wanted before they became unable or incompetent to answer (a judgment that might be made based on the patient’s expressed or inferred preferences and values), the child has never been able to form such preferences and values.

Who decides whether to let the child die, and how is the decision to be made? In particular, should the state, as custodian, decide based on state officials’ judgment about the child’s “best interests” — and what sort of objective governmental judgment of best interests can there be in such a case?

The particular cases I came across are In re K.I., 735 A.2d 448 (D.C. 1999), In re Christopher I., 131 Cal. Rptr. 2d 122 (Cal. App. 2003), In re Truselo, 846 A. 2d 256 (Del. Fam. Ct. 2000), and In re AMB, 640 NW 2d 262 (Mich. Ct. App. 2001). K.I, Christopher I., and Truselo, rule in favor of decisions to end life support or enter do-not-resuscitate orders, if a court finds by clear and convincing evidence that such decisions are in the child’s best interests. In re AMB holds that a decision to withdraw life support, which led to the child’s death, was not properly made (though it suggests that in general the best interests standard might be permissible, while “acknowledg[ing] that linking the removal of life support to the child’s best interests is, on the surface, enormously jarring”). In any case, if you’re interested in such matters, you might want to have a look at these opinions.

I should note, by the way, that a similar problem might well arise when the parents are quite fit, and the child is in the parents’ joint custody — either because the parents are married, or because they are divorced or otherwise unmarried but have joint custody for medical decisionmaking purposes — but the parents disagree on the proper course of action; I don’t know what is done about that, or whether such cases have indeed reached the courts.