What Families Wish They Had Known: Research on Immediate End-of-Life Care Needs in Cancer Patients

Key Message : Families often face unrecognized challenges in their child's final days. This multi-state qualitative study identified five key domains of immediate end-of-life care needs of bereaved parents of children with cancer and advanced heart disease. Findings revealed key deficiencies in communication, environment, and family-centered support, driving quality improvements and clinical education.

Abstract:

Objective: We aimed to explore families’ of children dying of cancer and advanced heart disease’s immediate end-of-life needs


Methods: A secondary qualitative analysis was conducted of 110 interviews (n = 55 Oncology;
n = 55 Advanced Heart Disease) with bereaved parents whose children died of cancer or cardiovascular disease in Alabama (n = 57), Massachusetts (n = 24), and California (n = 29). The cohort was racially diverse (45 White [41%], 43 Black [39%], and 15 Hispanic [14%]); the interviews were initially conducted to evaluate families’ perspectives on quality of end-of-life care; they were recorded and transcribed. In this analysis, quotes related to immediate end-of-life needs were identified inductively by AM with regular review for face validity by LH. Then AM inductively developed an initial codebook that was iteratively refined by the whole research team.


Results: Immediate end-of-life needs fall into five domains: 1) Last minute medical decisions: at end-of-life parents regularly had to make final decisions regarding resuscitation, withdrawal of treatment, and hospice transition. This was challenging due to limited guidance, and inconsistent communication. 2) Critical importance of the environment. Families valued private, quiet spaces, familiar staff, and opportunities for physical contact. 3 & 4) Psychosocial and financial resources. Counseling, sibling involvement, and memory making were inconsistently available, while logistical and financial burdens added stress. 5) Clear and compassionate communication: Across domains, clear and compassionate communication from healthcare providers was most influential as transparency and empathy eased decision-making, while inconsistency deepened distress.


Conclusion: This study identified critical end-of-life needs of families whose child was dying of cancer and AHD, which can inform end-of-life education and supportive services.

References: (I) Johnston, E., Martinez, I., & Bhatia, S. (2020). Expert Panel Endorsed Quality Metrics for End-of-Life Care for Children with Cancer: Results of a Modified Delphi Panel (CS203A). Journal of Pain and Symptom Management, 60(1), 197–198. https://doi.org/10.1016/j.jpainsymman.2020.04.042

(II) Linebarger, J. S., Johnson, V., & Boss, R. D. (2022). Guidance for Pediatric End-of-Life Care. Pediatrics, 149(5). https://doi.org/10.1542/peds.2022-057011