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Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations

Chris Feudtner, Sarah E. Friebert, Jennifer Jewell, Sarah E. Friebert, Brian Scott Carter, Chris Feudtner, Margaret R. Hood, Sonia O. Imaizumi, Kelly Komatz

📄 Abstract

Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital- and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases.

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