"You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die."
— Dame Cicely Saunders
The death of a child is a special, deep, and profound sorrow. “When a child dies, dreams die and we are all diminished by the loss of human potential” (Field & Behrman, 2003, p. xv).
Death is a relatively rare occurrence among children but it can have a devastating and enduring impact on surviving mothers, fathers, brothers, sisters, other family members, and close friends. “No matter the circumstances, a child’s death is a life-altering experience” (Field & Behrman, 2003, p. 1). In modern society, children are expected to outlive their parents. Yet, in the United States, of the approximately 2.5 million deaths that occur annually, about 43,000 deaths are attributed to infants and children (Friebert & Williams, 2015). Most of these deaths are due to trauma, lethal congenital disorders, or acquired illness (American Academy of Pediatrics [AAP], 2000; U.S. Department of Health and Human Services [USDHHS], 2011).
Children (ages 0–19 years) account for approximately 2% of all deaths in the United States—a stark difference from the year 1900 when children under 5 years of age accounted for 30% of all deaths (Friebert & Williams, 2015). While the pediatric death rate has declined in the United States due to socioeconomic, public health, and medical advances, the death of a child “violates the natural order and is always ‘out of season’” (Meyer, Ritholz, Burns, & Truog, 2006, p. 650).
Questions about what constitutes quality end-of-life care for children remain inadequately answered (Meyer et al., 2006). Children with fatal or potentially fatal conditions and their families often fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs. Although it is a rare occurrence, it is important to acknowledge that death does occur in pediatrics and it is important to provide these children and their families with compassionate end-of-life care within a family-centered and developmentally appropriate environment. Because of this need, there has been an increasing emergence of pediatric palliative and end-of-life care services throughout the United States (Crozier & Hancock, 2012; Field & Behrman, 2003; Meyer et al., 2006).
Ideally, when a death is expected, do-not-resuscitate (DNR) orders are in place and a planned withdrawal of support can occur, facilitating a more peaceful death for the patient and family. Other times, death is unexpected, occurring because of an accident or unsuccessful resuscitation (Roberts & Boyle, 2005). Because the causes of death for children are substantially different than the causes of death for adults (cancer, cardiovascular disease, diabetes, homicide, stroke, and respiratory disease), end-of-life guidelines that are appropriate for adults are often not appropriate for children (Centers for Disease Control and Prevention, 2010).
The American Academy of Pediatrics (2000) suggests:
For children living with life-threatening or terminal conditions, medical professionals are obligated to ensure that medical technology is used only when the benefits for the child outweigh the burdens (such as extremely high costs, undue pain and suffering, and no assurance of a cure). An infant or child will benefit from palliative care when no treatment has been shown to alter substantially the expected progression toward death. (p. 351)
An integrated model of palliative care provides support from the moment of diagnosis and continues throughout the course of the illness. It is often difficult to determine which children will benefit from palliative care because time of death is challenging to predict. If palliative care is only reserved for children who are dying or have a terminal condition, other patients who may benefit from the services may not receive them. The trend is for a broader definition of care that includes children living with life-threatening conditions so all children who need palliative care will benefit. The assumption that there is no place for palliative care until all curative options have been exhausted can interfere with an early discussion of palliative issues and may place an undue burden on the child and family (AAP, 2000).