Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature

Abstract

Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018;124:2278-88. © 2018 American Cancer Society.

Palliative care initiation in pediatric oncology patients: A systematic review

“…Another proposed explanation in literature for the lack of timely PC provision is the shortage of clinicians capable to deliver PC to children with cancer. 40 In a survey of PC providers-physicians, nurses, and other staff members-one-third of respondents cited insufficient training in PC as a barrier to earlier PC integration. 41 The limited exposure to targeted PC education in residency and fellowship means hospitals do not have staff with the training to meet the palliative needs of pediatric oncology patients.…”

Palliative care utilization in hospitalized children with cancer

“…Most PC services for children with cancer are rendered in the inpatient setting . The American Academy of Pediatrics recommends consideration of PC from diagnosis in children with cancer .…”

“…[4][5][6] Most PC services for children with cancer are rendered in the inpatient setting. 7 The American Academy of Pediatrics recommends consideration of PC from diagnosis in children with cancer. 5 In particular, cancer patients near the end of life and their families would benefit from PC given the high mortality risk and degree of suffering.…”

Cancer survivorship and palliative care: Shared progress, challenges, and opportunities

“…66 Although well developed in survivorship care, pediatric palliative care still is very much a growing field, and opportunities to further emphasize research in this area remain. [67][68][69] International studies have shown various benefits of the earlier integration of palliative care in terms of QOL, health care use, levels of patient and caregiver distress, and even survival. 9,24,70,71 As a result, models to introduce earlier palliative care concurrent with standard oncology treatment have received increased recognition.…”

“…Conversely, palliative care research has been growing, and many of the most recent clinically influential studies in the field have been centered around oncological diseases . Although well developed in survivorship care, pediatric palliative care still is very much a growing field, and opportunities to further emphasize research in this area remain . International studies have shown various benefits of the earlier integration of palliative care in terms of QOL, health care use, levels of patient and caregiver distress, and even survival .…”