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

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

Sedig LK; Spruit JL; Paul TK; Cousino MK; McCaffery H; Pituch K; Hutchinson R

American Journal of Hospice & Palliative Medicine

2020

Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Funding Source; Health Resource Utilization; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood

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.

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