RPD316 - End of life decision making experiences among bereaved caregivers of children with advanced heart disease

Key Message : Interviews with bereaved parents of children with advanced heart disease highlighted not only the many medical decisions they face at end-of-life but also facilitators (e.g., clinician continuity) of decision-making. These findings can help clinicians caring for these children and inform decision support interventions.

Abstract: Background
Families of children with advanced heart disease (AHD) face many decisions at end-of-life. However, little is known regarding the types of decisions nor how to support families.(1–3)

Objectives
We explored decision-making experiences at end-of-life among bereaved parents of children with AHD.

Methods
We describe a secondary analysis of semi-structured interviews of parents of children who died of AHD at two centers regarding perspectives on quality end-of-life care. This analysis focuses on end-of-life decision-making. Interviews were recorded and transcribed. Two coders identified comments related to decision-making and then met iteratively to inductively identify themes using content analysis.

Results
Fifty-seven parents were interviewed, representing 46 children and producing 52 hours of data. The most common diagnosis was single ventricle heart disease 19 (41%); median age of death was 4 months [IQR: 4-46.5 months]; 35 (76%) died in-hospital. Parents discussed the types of decisions encountered, including surgical interventions, initiation or cessation of technology, and resuscitation status. There were many decision-making facilitators, including (1) having sufficient information (“you have to have all the knowledge that you need before you can make that decision”), (2) clinician continuity (“but if it comes from the right person, I think parents are more receptive of that”), (3) presence of family/partner, and (4) time for decision-making. However, facilitators were intermittently absent and were barriers to optimal decision-making: ”[It] was very poorly timed to have that conversation of such magnitude when it was me alone.” Some parents identified a lack of options (e.g., location of death) or desire to distribute the decision-making burden: “You have to tell us. Because I don’t want a decision to be left to me.”

Conclusions
These findings highlight the many decisions parents of children with AHD make at end-of-life and factors that can support their decision-making process. These findings may inform decision support interventions.

References: 1. Ting J, Songer K, Bailey V, Rotman C et al. Impact of Subspecialty Pediatric Palliative Care on Children with Heart Disease; A Systematic Review and Meta-analysis. Pediatr Cardiol [Internet]. 2024 Jun 22 [cited 2025 Feb 2];1–15. Available from: https://link.springer.com/article/10.1007/s00246-024-03535-4
2. Vazquez Colon Z, Robinson L, Lopez-Colon D, et al. End-of-Life Course and Subspecialty Palliative Care Involvement for Children on Mechanical Circulatory Support: Five-Center Retrospective Cohort Study from the United States, 2015-2020. Pediatric Critical Care Medicine [Internet]. 2025 Sep 1 [cited 2025 Sep 24]; Available from: https://journals-lww-com.ezproxy.galter.northwestern.edu/pccmjournal/fulltext/2025/09000/end_of_life_course_and_subspecialty_palliative.4.aspx
3. Blume ED, Balkin EM, Aiyagari R et al. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: An exploratory study. Pediatric Critical Care Medicine. 2014.