Ethics in the Pediatric Intensive Care Unit

death within minutes to years. In fact, most children who die in the PICU do so after a decision has been made to either limit or withdraw (i.e., forgo) some form of LSMT [1]. The use of LSMT assumes that the burden of treatment is justifi ed by the anticipated outcome of an acceptable quality of life. As the anticipated quality of life deteriorates or becomes increasingly unlikely, or as the burden of treatment becomes intolerable, continued LSMT may not make sense. Decisions to limit LSMT may include not attempting resuscitation, not escalating inotropic or ventilator support, or not starting new treatments (such as endotracheal intubation or new modes of ventilation). Decisions to withdraw LSMT may include stopping inotropic support, decreasing or stopping ventilator support, stopping endotracheal intubation, or stopping artifi cially provided hydration and nutrition. The reasons for forgoing LSMT can be grouped into two broad categories: the intervention either (1) does not or will not work (i.e., futility) or (2) is not worth doing as the burden of treatment outweighs any expected or actual benefi t (i.e., disproportionate burden) [2]. For example, performing a tracheotomy and instituting long-term ventilation for a child in a persistent vegetative state who aspirates and develops respiratory failure may be disproportionately burdensome, but it is not futile. The majority of decisions to forgo LSMT in the PICU are based on the judgment of disproportionate burden rather than on the more limited concept of futility. The judgment that continued LSMT presents a disproportionate burden involves a complex and value-laden balancing between the burden of intervention and the benefi t of the anticipated outcome for the child. In striking this balance, the focus should be on the quality of the child’s experience and not on the worth of that child’s life to others. Although pain and agitation can be minimized through medication, caregivers and parents may perceive differently the degree to which a child is suffering and to what purpose. The loss of interaction with a child who is on extracorporeal membrane oxygenation (ECMO) or nonconventional forms of mechanical ventilation because of the need for sedating medication may be especially diffi cult for parents. In conversation, clinicians should seek to understand the parents’ perspective and the role of factors such as tolerance for disability, hope for recovery, religious faith, views of other family members, and so forth. Clinicians often use the term futility broadly and thus obscure the fact that the assessment of disproportionate burden rests on a value judgment about the anticipated outcome that the family may not share. As futility may be used to justify a decision to forgo Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Setting Limits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 The Process of Delivering Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 Declaring Death and Organ Transplantation. . . . . . . . . . . . . . . . . 39 Research with Critically Ill Children in the Pediatric Intensive Care Unit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40