Rosenberg, Abby R.

Importance: Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values. 

Objective: The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support.

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.