Physician Perspectives on Palliative Care for Children with Advanced Heart Disease: A Comparison between Pediatric Cardiology and Palliative Care Physicians

Physician Perspectives on Palliative Care for Children with Advanced Heart Disease: A Comparison between Pediatric Cardiology and Palliative Care Physicians

Balkin EM; Sleeper LA; Kirkpatrick JN; Swetz KM; Coggins MK; Wolfe J; Blume ED

Journal of Palliative Medicine

2018

pediatric end-of-life care; Child; Only Child; Palliative Care; Physicians; Referral and Consultation; pediatric palliative care; child; advanced heart disease; pediatric heart failure; physician perspectives

BACKGROUND: While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease. OBJECTIVE: To compare the perspectives of PPC physicians and pediatric cardiologists regarding palliative care in pediatric heart disease. DESIGN: Cross-sectional web-based surveys. RESULTS: Responses from 183 pediatric cardiologists were compared to those of 49 PPC physicians (response rates 31% [183/589] and 28% [49/175], respectively). Forty-eight percent of PPC physicians and 63% of pediatric cardiologists agreed that availability of PPC is adequate (p = 0.028). The majority of both groups indicated that PPC consultation occurs "too late." Compared with pediatric cardiologists, PPC physicians reported greater competence in all areas of advance care planning, communication, and symptom management. PPC physicians more often described obstacles to PPC consultation as "many" or "numerous" (42% vs. 7%, p < 0.001). PPC physicians overestimated how much pediatric cardiologists worry about PPC introducing inconsistency in approach (60% vs. 11%, p < 0.001), perceive lack of added value from PPC (30% vs. 7%, p < 0.001), believe that PPC involvement will undermine parental hope (65% vs. 44%, p = 0.003), and perceive that PPC is poorly accepted by parents (53% vs. 27%, p < 0.001). CONCLUSIONS: There are significant differences between pediatric cardiologists and PPC physicians in perception of palliative care involvement and perceived barriers to PPC consultation. An intervention that targets communication and exchange of expertise between PPC and pediatric cardiology could improve care for children with heart disease.

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April 2018 List