Pediatric End of Life Care and Bereavement During COVID- 19: The Experiences of Moral Distress

Abstract

From the onset of the COVID-19 pandemic, psychosocial oncology providers have experienced various types of moral distress. Challenges include difficulty building rapport with telephone/computer replacing face-to-face connections, lack of clarity around who is designated as essential, and the witnessing of inadequately addressed distress and isolation, especially at the end-of-life. This study aimed to define the ways that the pandemic has impacted endof- life care and the approaches to bereavement care in pediatric palliative care (PPC). 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 national Listservs. 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. Respondents expressed a significant impact on care due to changes in hospital visitation policies, bereavement care, and funeral practices. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with some exceptions at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents depicted moral distress, often focused on bearing witness to patient and family suffering enhanced by the pandemic and an inability to provide a desired level of care due to restrictive policies. The COVID-19 pandemic has highlighted the existing inequities in access to critical resources and emotional support causing a profound impact on the provision of end-of-life care and bereavement care for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted physical contact and the pain of watching families stumble through a impeded grieving process. Findings underscore the need to address moral distress associated with delivering psychosocial care that does not feel optimal or even acceptable.