Barriers to integrating palliative care and potential solutions

Patrick M. Jones, Sally Sehring, Dianne Gray, David M. Steinhorn

Research output: Chapter in Book/Report/Conference proceedingChapter


Aaron, a 3-month-old boy who has Krabbe disease, is referred to the palliative care team. He has undergone a bone marrow transplantation, which unfortunately failed to reverse the symptoms of the underlying disease. The disease has progressed, and he now depends on a ventilator, is unresponsive, and is not expected to survive more than a few months. His mother, Alicia, a single parent, would like to spend time with him at home, where his 2-year-old sister, Abby, is waiting for him. Alicia would like Aaron to be able to die at home, but they live in a small, rural community, served only by an adult hospice in a nearby town. Alicia has begun to process the paperwork for a Medicaid waiver for medically fragile, ventilator-dependent children but has not yet received approval. The pediatrician practicing in the family's community is uncomfortable with technology-dependent and terminally ill children. Aaron seems destined to spend his remaining days in the acute care hospital because of the lack of suitable community resources, associated medical oversight, and systems to honor his family's wishes. Recognition of the need for hospital- and community-based pediatric palliative care is growing. The public is increasingly aware of the presence of children who will not reach adulthood; however, relatively few children and their families are able to access high-quality, family-centered pediatric palliative and hospice care when needed. Wolfe and colleagues' documentation of unmitigated suffering experienced by children dying of cancer in one of the most forward-thinking medical settings in the United States is a call to action for individuals and organizations concerned about the well-being of children living with complex medical conditions. These data should serve as a potent stimulus to all health care providers, administrators, and public policy makers to evaluate why it is so difficult to meet the needs of children living with life-threatening conditions (Wolfe et al., 2000; Field and Behrman, 2003). While advocating for the uniform and consistent integration of palliative care into health care for children, the reader needs to appreciate the diffi- culties that families face in obtaining optimal care for children living with life-threatening conditions. In the last decade, numerous authors have chronicled the obstacles (AAP COB, 2000; Meisel et al., 2000; Wolfe et al., 2000; Hilden et al., 2001; Himelstein, 2006; Löfmark, Nilstun, and Bolmsjö, 2007; Davies et al., 2008; Johnston et al., 2008; Steele, Bosma, and Johnston, 2008; Schickedanz et al., 2009). This chapter addresses the major barriers to pediatric palliative care as experienced throughout North America and in many other parts of the world: • Lack of clarity regarding the nature of palliative care • Poor communication • Racial, social, and ethnic barriers • Unrealistic expectations • Reimbursement and financing • Organizational obstacles.

Original languageEnglish (US)
Title of host publicationPalliative Care for Infants, Children, and Adolescents : A Practical Handbook
PublisherThe Johns Hopkins University Press
Number of pages29
ISBN (Print)1421401487, 9781421401492
StatePublished - 2011
Externally publishedYes

ASJC Scopus subject areas

  • Social Sciences(all)


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