Sandra Aziz, Joshua Roy, Elise Whalen, Hidhy Paulose Varghese, Jill Ann Jarrel
Baylor College of Medicine and Texas Children’s Hospital.
United States
Journal of Palliative Care
J Palliat Care 2026;
DOI: 10.1177/10966218261494685
Abstract
Comprehensive care of pediatric Pulmonary Hypertension (PH) patients may include multiple subspecialty and supportive services, including specialized pediatric palliative care (PPC). PPC is interdisciplinary, patient- and family-centered care that supports the physical, emotional, and spiritual well-being of children with serious illnesses to promote quality of life. We present a case series of three patients that highlight several of the unique approaches used by specialized PPC in pain and symptom management, assessing patient and caregiver coping, advance care planning, care coordination, complex medical decision-making, end-of-life care, and grief and bereavement support. Our aim is to define the role of PPC in the longitudinal care of PH patients and to initiate discussions on best practices and optimal outcomes in this population.
Category
Quality of Life Associated with Pulmonary Vascular Disease
Age Focus: Pediatric Pulmonary Vascular Disease
Fresh or Filed Publication: Fresh (PHresh). Less than 1-2 years since publication
Article Access
Free PDF File or Full Text Article Available Through PubMed or DOI: No