Pediatric Palliative Care and the Medical Home

Abstract

An estimated 7 million children globally would benefit from pediatric palliative care services. Pediatric palliative care is both a philosophy and a model of care where the fundamental concepts are to provide whole-person care, meaning physical, psychosocial, and spiritual care, to the child, parent, and siblings. While there is no standardized list of diagnoses appropriate for pediatric palliative care currently available, many advocates and health care workers promote and utilize categories established for use by Together for Short Lives in the United Kingdom (formerly ACT, the Association for Children’s Palliative Care) to describe the types of illnesses that could benefit from pediatric palliative care. Today, programs throughout the globe provide services in a variety of settings including academic, tertiary care hospitals, homes, and hospices. The pediatric palliative care movement began to expand rapidly in the 1980s and since then many changes have occurred. Programs across the globe continue to be developed, most impressively in countries with limited development and resources, such as Uganda and Costa Rica. Educational programs are key to the success of pediatric palliative care programs and over the last decade there has been significant growth in this area globally. A significant change in the evolution of pediatric palliative care over the past 30 years is the modification to the definition of pediatric palliative care by the World Health Organization in the late 1990s. The definition was changed to state that pediatric palliative care should be delivered alongside, and not in place of, curative care. This change reinforced the fact that palliative care is complementary to curative treatments and not an intervention delivered only as death becomes inevitable. Thus, pediatric palliative care services should be made available and delivered from the point of diagnosis onward. This integrative approach to pediatric palliative care continues to be misunderstood, denying children and their families the right to these specialized services. This confusion is also seen between primary and palliative care for children.