Pediatricians' Perceptions of and Preferred Timing for Pediatric Palliative Care

Abstract

OBJECTIVES. This study investigates how pediatricians define palliative care and their preferences regarding the timing of referrals for children with life-limiting diseases. METHODS. A random sample of 800 pediatricians in Florida and California received mail and online surveys. Analyses included descriptive and multivariate regression analyses. RESULTS. Of all respondents (N = 303), 49.1% were female, 34.0% had been practicing for ≥20 years, 44.2% were members of a racial/ethnic minority, and 76.2% were in private practice. Pediatricians were divided in their definitions of palliative care; 41.9% defined it as hospice care, 31.9% offered alternative definitions, and 26.2% did not know. Although pediatricians overwhelmingly cited the need for many types of palliative care services, only 49.3% had ever referred patients to palliative care and 29.4% did not know whether local services existed. For 13 diseases that vary in life limitation, there was no consensus regarding the timing of referrals. Diversity across diseases predicted the most variation in referrals, whereas pediatrician characteristics did not. CONCLUSIONS. Despite recommendations to refer children to palliative care early in the course of illness, most pediatricians define palliative care as similar to hospice care and refer patients once curative therapy is no longer an option. Creating a more-practical definition of care, one that emphasizes an array of services throughout the course of an illness, as opposed to hospice care, may increase earlier palliative care referrals for children with life-limiting illnesses.