13 The Interface of Ethics and Palliative Care

Ethics committees and consultation in pediatrics are both relatively recent phenomena. In the 1970s, only a few hospitals had ethics committees.¹ By the end of the 1980s, most hospitals did. The stimulus for the development of ethics committees was the Baby Doe controversy of the early 1980s in which a baby with Down syndrome and esophageal atresia was allowed to die without routine surgery. This led the federal government to promulgate controversial guidelines for end-of-life decisions, guidelines that were challenged and eventually struck down by the U.S. Supreme Court.² In the aftermath of that controversy, the American Academy of Pediatrics (AAP) formed a task force to define the role of ethics committees.³ The early committees focused almost exclusively on newborns and the controversies surrounding decisions to withhold or withdraw life-sustaining treatment. Later, ethics committees broadened the scope of their concerns.

According to the AAP, ethics committees (or “infant care review committees”) were to have three purposes. First, they were to provide an educational resource to hospital personnel and families of seriously ill infants. Second, they were to recommend institutional policies and guidelines. Finally, they could offer ethics consultation and review treatment decisions regarding critically ill infants. This original guiding document suggested that the term “infant” refer to any person less than 2 years old.

Over the years, ethics committees and consultants have taken on more diverse roles. They broadened their mandates to include children of any age.⁴ Some even began considering cases involving fetuses and perinatal decisions.⁵ They also broadened the scope of their concern from clinical decisions to cases involving organizational ethics.⁶ Organizational issues of concern include matters of informal organizational culture, especially when that informal culture leads to practices that conflict with organizational policy, communication problems, and issues of resource allocation that are built into but not explicitly addressed by organizational policy.⁷

Pediatric palliative care programs developed over the same time period as pediatric bioethics committees. Their development was not fueled by a political controversy so they had a somewhat slower start.⁸ The field of palliative care gained legitimacy with the creation of a national board of hospice and palliative care medicine in 1995.⁹ In 2003, the Institute of Medicine report “When Children Die,” helped define the field of pediatric palliative care.¹⁰ The first freestanding pediatric hospice and respite care facility, the George Mark Children’s House, opened in California in 2003.

Most tertiary care children’s hospitals now have both ethics committees and palliative care services. There are many ways in which these two entities can and should work together. There are also ways in which they might come into conflict. This chapter will outline some of the domains of overlap and discuss the implications of the different goals and missions of bioethics and palliative care.