Patterns and Outcomes of Care in Children with Advanced Heart Disease Receiving Palliative Care Consultation

Patterns and Outcomes of Care in Children with Advanced Heart Disease Receiving Palliative Care Consultation

Marcus KL; Balkin E M; Al-Sayegh H; Guslits E; Blume E D; Ma C; Wolfe J

10.1016/j.jpainsymman.2017.08.033

Journal Of Pain And Symptom Management

2017

Advanced Heart Disease; Goals Of Care; Pediatric End-of-life Care; Pediatric Palliative Care

CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children with AHD. METHODS: Retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016. RESULTS: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/non-structural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year prior. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n=109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (p=0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (p=0.008). CONCLUSION: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.

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November 2017 List