The death of a child is a special sorrow, a lifelong loss for surviving mothers, fathers, brothers, sisters, grandparents, and other family members. Some children die after an extended illness; others die suddenly with no forewarning. No matter the circumstances, a child’s death is a life-altering experience.
At best, the physicians, nurses, and others who care for a child who dies and for the surviving family will help all involved feel that they did everything they could, that the parents were good parents, that the child and family spent their time together—however limited—forging or reinforcing bonds of love. At worst, families live with memories of possibly needless suffering and with enduring regrets or doubts about their own choices. In between are experiences like that of Abby’s family—experiences of good care alternating with unwittingly inflicted pain, of compassion mixed with insensitivity, of choices made and then doubted. Health care professionals may also feel anguished and unsure that they did what was best.
The goal of palliative, end-of-life, and bereavement care for children and their families is to provide them with the best care and support possible and to do so reliably and consistently, no matter how or where a child is cared for. Despite good intentions, that goal is too often not met. Omissions and missteps in care may not be recognized. If they are, health care professionals and organizations may not systematically learn from experience as Abby’s and Jonathan’s parents did.
Because children are resilient, because they are so cherished, and because advances in medicine and public health have greatly reduced child mortality in the United States, those caring for children with life-threatening medical problems are usually committed to pursuing all curative and life-prolonging options until death is at hand. This intensive but limited focus can expose children and families to unnecessary suffering, particularly if inadequate attention is paid to the potential burdens as well as benefits of these options and to children’s physical and emotional distress.
A more comprehensive approach to care is needed. Regardless of the decisions made about curative or life-prolonging treatments, children with life-threatening medical problems and their families should have access to accurate information and excellent supportive care that offers physical, emotional, and spiritual comfort from the time of diagnosis through death and into bereavement—if death is the outcome. Good palliative care should benefit children who survive a life-threatening medical problem as well as those who do not—and should support the families of children in both groups. When they look back, families should feel that everyone did their best to help their child and family.
In recent years, health care professionals, policymakers, researchers, faith communities, and others have paid increasing attention to the needs of people approaching death and those close to them. Because approximately