Palliative care referral criteria and application in pediatric illness care: A scoping review

Abstract

Background: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how these guidelines or other clinical characteristics influence pediatric palliative care referral in research and practice.

Aim: To evaluate the identification and application of palliative care referral criteria in pediatric illness care and research.

Design: A scoping review with a content analysis approach to summarize results.

Data sources: Five electronic databases (PubMed, CINAHL, PsycINFO, SCOPUS, and Academic Search Premier) were used to identify peer-reviewed literature published in English between January 2010 and September 2021.

Results: We included 37 articles focused on the referral of pediatric patients to palliative care teams. The identified categories of referral criteria were: disease-related; symptom-related; treatment communication; psychosocial, emotional, and spiritual support; acute care needs; end-of-life care needs; care management needs; and self-referrals for pediatric palliative care services. We identified two validated instruments to facilitate palliative care referral and seven articles which described population-specific interventions to improve palliative care access. Nineteen articles implemented a retrospective health record review approach that consistently identified palliative care needs with varying rates of service use.

Conclusions: The literature demonstrates inconsistent methods for identifying and referring children and adolescents with unmet palliative care needs. Prospective cohort studies and clinical trials would inform more consistent pediatric palliative care referral practices. More research is needed on palliative care referral and outcomes in community-focused pediatrics.

Keywords: Pediatrics; chronic disease; palliative care; palliative medicine; referral and consultation; systematic review.