Pediatric Palliative Care

Michelle R. Brown, Ph.D. Barbara Sourkes, Ph.D.

The goal is to add life to the child's years, not simply years to the child's life.

American Academy of Pediatrics 2000, p. 353

Pediatric palliative care is a new interdisciplinary frontier in the comprehensive care of children. Although children with life-threatening and life-limiting conditions have always been part of the health care system, only recently has an integrated vision toward their care begun to emerge. This momentum is reflected in the policy statement issued by the American Academy of Pediatrics (2000) calling for equitable support for curative, life-prolonging, and palliative care. Broadly defined, "Palliative care for [children and] young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social, and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision for respite, and care through death and bereavement" (Joint Working Party on Palliative Care for Adolescents and Young Adults 2001, p. 8).

In the pediatric model, as in the adult model of palliative care, quality of life is emphasized and comfort is a primary goal. Although transition to palliative care often occurs very close to the time of death in the adult model, in the pediatric model, efforts to initiate palliative care for children earlier in the ill ness trajectory—in a proactive manner—enable effective care planning for the entire family. Approximately 55,000 children die each year in the United States. Of those, over half are under age 1 year (Institute of Medicine 2003). (The percentages of deaths by age group and cause are presented in Figures 16-1 and 16-2, respectively.) Thus, pediatric palliative care encompasses a broad age range and may be initiated even before a child's birth. Pediatric palliative care also encompasses a broad spectrum of conditions that fall within one of four categories (see Table 16-1) (Joint Working Party on Palliative Care for Adolescents and Young Adults 2001).

Prognosis is often far less predictable among children than adults. As a result, much debate is occurring about the terms life limiting and life threatening as this new field develops (Abrahm and Sourkes 2004; Joint Working Party on Palliative Care for Adolescents and Young Adults 2001; Association for Children with Life-Threatening or Terminal Conditions and Their Families and Royal College of Paediatrics and Child Health 2003). Life threatening is a broader concept, in that it includes illnesses for which cure is possible, although the threat of a fatal outcome exists, as in the case of childhood malignancies. Of

Homicide and suicide 9%

Other 30%

Cancer 4%

Respiratory distress 2%

SIDS 4%

Homicide and suicide 9%

Other 30%

Unintentional injuries 23%

Heart disease 1% Placental cord membrane 2%

Congenital anomalies 13%

Complications of

Unintentional injuries 23%

Heart disease 1% Placental cord membrane 2%

Congenital anomalies 13%

Complications of pregnancy 3%

Figure 16-1. Percentage of total childhood deaths by major causes (2004).

Source. Data from Heron 2007.

course, an illness may begin as life threatening and convert into a life-limiting condition, as when a child relapses and curative options no longer exist. Life-limiting conditions are those that have no reasonable chance of cure from the outset; even if children survive for years and decades, they will not have a normal life expectancy. Thus, the necessity for palliative care may emerge at different points in the illness trajectory, depending on the prognosis for the child, the decisions made in choosing between treatment options, and the management of pain and suffering. Distinct models, such as those shown in Figure 16-3, are therefore necessary to depict the heterogeneous approaches to the provision of palliative care (Joint Working Party on Palliative Care for Adolescents and Young Adults 2001).

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