Using Family Narrative Reports to Identify Practices for Improving End-of-Life Care Quality

Abstract

Context: Patient experiences should be considered by healthcare systems when implementing care practices to improve quality of end-of-life care. Families and caregivers of recent in-patient decedents may be best positioned to recommend practices for quality improvement.

Objectives: To identify actionable practices that bereaved families highlight as contributing to high quality end-of-life care.

Methods: We conducted qualitative content analysis of narrative responses to the Bereaved Family Surveys Veterans Health Administration inpatient decedents. Out of 5964 completed surveys in 2017, 4604 (77%) contained at least one word in response to the open-ended questions. For feasibility, 1500/4604 responses were randomly selected for analysis. An additional 300 randomly selected responses were analyzed to confirm saturation.

Results: Over 23% percent (355/1500) of the initially analyzed narrative responses contained actionable practices. By synthesizing narrative responses to the BFS in a national healthcare system, we identified 98 actionable practices reported by the bereaved families that have potential for implementation in QI efforts. Specifically, we identified 67 end-of-life practices and 31 practices in patient-centered care domains of physical environment, food, staffing, coordination, technology and transportation. The 67 cluster into domains including respectful care and communication, emotional and spiritual support, death benefits, symptom management. Sorting these practices by target levels for organizational change illuminated opportunities for implementation.

Conclusion: Narrative responses from bereaved family members can yield approaches for systematic quality improvement. These approaches can serve as a menu in diverse contexts looking for approaches to improve patient quality of death in in-patient settings.

Keywords: Palliative care; bereaved family survey; qualitative research; quality improvement; veterans affairs.