Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

Am J Hosp Palliat Care. 2020 Dec;37(12):1009-1015. doi: 10.1177/1049909120922973. Epub 2020 May 6.


Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking.

Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017.

Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful.

Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.

Keywords: bereaved parents; end of life; palliative care; pediatric oncology; quality of life; survey.

MeSH terms

  • Child
  • Death
  • Humans
  • Parents*
  • Professional-Family Relations
  • Terminal Care* / psychology
  • Terminal Care* / standards
  • Terminal Care* / statistics & numerical data