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Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19

Published online by Cambridge University Press:  02 March 2021

Lori Wiener*
Affiliation:
Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, MD
Abby R. Rosenberg
Affiliation:
Division of Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA
Brian Pennarola
Affiliation:
Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, MD
Abigail Fry
Affiliation:
Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, MD
Meaghann Weaver
Affiliation:
Division of Pediatric Palliative Care, Children's Hospital and Medical Center, Omaha, NE
*
Author for correspondence: Lori Wiener, Behavioral Health Core, Director, Psychosocial Support and Research Program, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, 10 Center Drive, Room 1C247B-4, Bethesda, MD 20892, USA. E-mail: wienerl@mail.nih.gov

Abstract

Objective

Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).

Method

The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.

Results

A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.

Significance of results

The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

Type
Original Article
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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