Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic

Michael J. McNeil, St. Jude Children's Research Hospital, Department of Global Pediatric Medicine, Memphis, Tennesse, USA; St. Jude Children's Research Hospital, Division of Quality and Life and Palliative Care, Department of Oncology, Memphis, Tennesse, USA. Electronic address: michael.mcneil@stjude.org.
Erica C. Kaye, St. Jude Children's Research Hospital, Division of Quality and Life and Palliative Care, Department of Oncology, Memphis, Tennesse, USA.
Yuvanesh Vedaraju, St. Jude Children's Research Hospital, Department of Global Pediatric Medicine, Memphis, Tennesse, USA.
Justin N. Baker, St. Jude Children's Research Hospital, Division of Quality and Life and Palliative Care, Department of Oncology, Memphis, Tennesse, USA.Follow
Meenakshi Devidas, St. Jude Children's Research Hospital, Department of Global Pediatric Medicine, Memphis, Tennesse, USA.
Julia Downing, International Children's Palliative Care Network, Assagay, South Africa.
Dylan Graetz, St. Jude Children's Research Hospital, Department of Global Pediatric Medicine, Memphis, Tennesse, USA.Follow
Radhikesh Ranadive, St. Jude Children's Research Hospital, Department of Global Pediatric Medicine, Memphis, Tennesse, USA.
Abby R. Rosenberg, Division of Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA; Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington, USA.
Lori Wiener, National Institutes of Health, National Cancer Institute, Center for Cancer Research, Bethesda, Maryland, USA.
Meaghann S. Weaver, National Center for Ethics in Healthcare, Washington, District of Columbia, USA; Division of Pediatric Palliative Care, Children's Hospital and Medical Center, Omaha, Nebraska, USA.

Abstract

CONTEXT: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care. OBJECTIVE: Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic. METHODS: The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey. RESULTS: One hundred and fifty-six providers were included in the final analysis with 59 countries and six continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients' pain, fear, and isolation. CONCLUSIONS: PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams. ARTICLE SUMMARY: This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents' distress in provision of comfort at the end of life.

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Journal of pain and symptom management

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