Moving the typical experience of children and families toward the best care and entirely eliminating the worst care is an achievable goal. It is a goal that will depend on shifts in attitudes, policies, and practices involving not only health care professionals but also those who manage, finance, and regulate health care. That is, it will require system changes not just individual changes.
Child- and family-centered palliative and end-of-life care has many dimensions. One way to understand these dimensions is to view them, in a sense, as responses to families’ fundamental questions and concerns following the diagnosis of child’s life-threatening medical condition.
“What is happening to me?” “What is happening with my child?” Good palliative, end-of-life, and bereavement care supports children and families with accurate, clear, and timely information about the child’s condition and prognosis from the time of diagnosis through death and into bereavement—if death is the outcome.
“What are our choices? How can we be good parents?” Following diagnosis, child- and family-centered care provides full, understandable, and timely information about curative, life-prolonging, and palliative treatment options that includes descriptions of potential harms or burdens as well as potential benefits of treatments. A central goal is to help the child and family to develop and adjust medical and personal goals based on their values and preferences as well as on medical and other circumstances.
“How will you help us?” Appropriate palliative and end-of-life care offers a plan of physical, psychological, spiritual, and practical support that is adapted to the goals, values, and circumstances of each child and family. It is always appropriate for a child’s plan of care to include such support while curative or life-prolonging therapies are pursued.
The rest of this chapter is organized primarily around these questions. The chapter tends to emphasize the role of the physician as diagnostician and communicator and as the ultimate locus of professional accountability for a child’s care, particularly in the hospital. The discussion in Chapters 5 and 6 should, however, make clear that all members of the health care team—nurses, social workers, psychologists, child-life specialists, hospice personnel, and others—have specialized skills that are essential to comprehensive palliative, end-of-life, and bereavement care, including effective communication.
Such communication is especially important because parents may simultaneously hold multiple, possibly conflicting, goals that complicate decisionmaking. On the one hand, they may be profoundly reluctant to accept that their child will die, may need to feel that they have tried every option that might save their child, and may resist or resent certain offers of