• Jori F Bogetz, Anne Anderson, Monica Holland, and Robert Macauley.
• Division of Bioethics and Palliative Care, Department of Pediatrics, Palliative Care and Resilience Lab, Center for Clinical and Translational Research, University of Washington School of Medicine, Seattle Children's Hospital and Research Institute, Seattle, Washington, USA. Electronic address: jori.bogetz@seattlechildrens.org.
• J Pain Symptom Manage. 2022 Jul 1; 64 (1): e7-e14.

ContextGiven workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas.ObjectivesTo describe the services, training, and education needs of pediatric hospice and palliative care programs across the Northwest United States as part of the formation of a new regional coalition.MethodsElectronic surveys were sent to pediatric hospice and palliative care clinicians through state organizations as part of an email invitation to join the Northwest Pediatric Palliative Care Coalition. Data were analyzed descriptively using univariate analysis.ResultsSixty-four participants representing 37 unique programs responded from seven states, including Washington (41%, n=27), Oregon (38%, n=25), Idaho (11%, n=7), Alaska (5%, n=3), Montana (3%, n=2), Colorado (2%, n=1), and Nevada (2%, n=1). Programs provided pediatric hospice care (42%, n=33/78) and palliative care services (30%, n=26/86). Although 26% (n=15/58) had been providing pediatric hospice and palliative care for >20 years, 40% (n=21/53) reported only serving <5 pediatric patients per year. Specific services provided included pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231). Barriers occurring always, often, or sometimes included lack of trained staff (84%), financial support (59%), and access to home infusions (48%). From the coalition, participants prioritized education on parent/caregiver psychosocial support (40%, n=19/48), goals of care communication (44%, n=21/48), and symptom management (45%, n=21/47).ConclusionsPediatric hospice and palliative care clinicians face numerous barriers and may benefit from a coalition that provides networking and tailored education.Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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