Quality Measure Considerations for Pediatric Palliative and End-of-Life Care

There is an emerging need to provide high-quality pediatric palliative care and end-of-life care to children, adolescents, and young adults with life-limiting illnesses. Currently, there are no standardized quality measures supporting pediatric palliative care and end-of-life care patient outcomes. The aim of this literature review was to explore current quality measures utilized in pediatric palliative care and end-of-life care among pediatric patients with life-limiting illnesses within the conceptual framework of Comfort Theory. A comprehensive review of relevant articles resulted in 15 articles that met criteria and were evaluated. Included studies focused on pediatric patients with life-limiting illnesses receiving palliative care or end-of-life care. Articles related to children with acute illness, trauma, or accidental death were excluded. Emergent themes among quality measures were categorized into 7 domains: (a) Alleviation of distressing symptoms, (b) Structures and processes of care, (c) Health care utilization, (d) Location of death and bereavement care, (e) Patient and family experiences, (f) Psychological and spiritual care, and (g) Cultural, ethical, and legal considerations. These domains support the physical, psychospiritual, sociocultural, and environmental contexts of Comfort Theory. Quality measure research, development, and standardization should focus within the 7 domains identified for the promotion of comfort, equity, and accessible care.