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

  • Karleen F. Giannitrapani
    Correspondence
    Address correspondence to: Karleen Giannitrapani, PHD, MPH, VA Palo Alto Health Care System, Menlo Park Division (152-MP) Building 324, 795 Willow Road, Menlo Park, CA 94025, USA.
    Affiliations
    Center for Innovation to Implementation (K.F.G., M.Y., M.D.M., J.R.G., C.G., K.A.L.), VA Palo Alto Health Care System, Menlo Park, CA, USA

    Division of Primary Care and Population Health (K.F.G., K.A.L.), Stanford University School of Medicine, Stanford, CA, USA
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  • Maria Yefimova
    Affiliations
    Center for Innovation to Implementation (K.F.G., M.Y., M.D.M., J.R.G., C.G., K.A.L.), VA Palo Alto Health Care System, Menlo Park, CA, USA

    Office of Research (M.Y.), Patient Care Services, Stanford Healthcare, Stanford, CA, USA
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  • Matthew D. McCaa
    Affiliations
    Center for Innovation to Implementation (K.F.G., M.Y., M.D.M., J.R.G., C.G., K.A.L.), VA Palo Alto Health Care System, Menlo Park, CA, USA
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  • Joy R. Goebel
    Affiliations
    Center for Innovation to Implementation (K.F.G., M.Y., M.D.M., J.R.G., C.G., K.A.L.), VA Palo Alto Health Care System, Menlo Park, CA, USA

    School of Nursing California State University Long Beach (J.R.G.), Long Beach CA, USA
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  • Ann Kutney-Lee
    Affiliations
    Veteran Experience Center (A.K.L.), Corporal Michael J. Crescenz VA Medical Center, Philadelphia, PA, USA

    University of Pennsylvania School of Nursing (A.K.L.), Philadelphia, PA, USA
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  • Caroline Gray
    Affiliations
    Center for Innovation to Implementation (K.F.G., M.Y., M.D.M., J.R.G., C.G., K.A.L.), VA Palo Alto Health Care System, Menlo Park, CA, USA
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  • Scott T. Shreve
    Affiliations
    Hospice and Palliative Care Program (S.T.S.), US Department of Veteran Affairs, Hospice and Palliative Care Unit, Lebanon VA Medical Center, Lebanon, PA, USA
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  • Karl A. Lorenz
    Affiliations
    Center for Innovation to Implementation (K.F.G., M.Y., M.D.M., J.R.G., C.G., K.A.L.), VA Palo Alto Health Care System, Menlo Park, CA, USA

    Division of Primary Care and Population Health (K.F.G., K.A.L.), Stanford University School of Medicine, Stanford, CA, USA
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      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.

      Key Words

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