Ethical Issues Surrounding Limitation and Withdrawal of Support in the Pediatric Intensive Care Unit

Abstract

Death in the pediatric intensive care unit (PICU) is most frequently associated with limiting or withdrawal of life-sustaining medical treatment (LSMT). The transition from cure to care occurs in stages with all parties needing to consider several ethical issues. This article reviews these issues, including the concept of futility, disproportionate burden, assent, and best interest while taking the reader through the shift in emphasis from cure to care. Physicians may also be concerned with issues such as active and passive euthanasia, the “Baby Doe” regulations, and the question of prognostic certainty. Communication can be maximized to facilitate decisions regarding LSMT. If conflicts arise there should be an established mechanism for conflict resolution that may include involving an ethics committee or, rarely, the judicial system. Once the decision has been made to remove LSMT the emphasis becomes comfort care. Palliative care and bereavement specialists can provide an invaluable service. Many families will inquire about organ donation at the time limitation or withdrawal of LSMT. In order to increase organ availability trained counselors need to talk to families, and institutions are evaluating non-heart-beating donor policies. Autopsies should be discussed with the family in order to inform them of the potential benefits and address any concerns. Two special topics regarding withdrawal of LSMT are child abuse and brain death. In the case of abuse, the discussion of limiting or withdrawing LSMT can be complicated by two factors: the apparent conflict of interest of the accused or convicted parent retaining guardianship, and the possibility of the defense lawyer arguing that the removal of LSMT was the cause of death. When a child is brain dead careful attention must be paid to language, for example, that “machines” are stopped rather than “life support.”