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    Original Investigation
    October 11, 2019

    Association of Family Ratings of Quality of End-of-Life Care With Stopping Dialysis Treatment and Receipt of Hospice Services

    Author Affiliations
    • 1Health Services Research and Development, Seattle-Denver Center of Innovation for Veteran-Centered and Value-Driven Care, US Department of Veterans Affairs, Seattle, Washington
    • 2Department of Health Services, School of Public Health, University of Washington, Seattle
    • 3Corporal Michael J. Crescenz VA Medical Center–Philadelphia, Philadelphia, Pennsylvania
    • 4School of Nursing, Perelman School of Medicine, University of Pennsylvania, Philadelphia
    • 5Veterans Affairs Boston Healthcare System, Boston, Massachusetts
    • 6Dana-Farber Cancer Institute, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts
    • 7School of Nursing, Department of Biobehavioral Nursing and Health Informatics, University of Washington, Seattle
    • 8University of Washington School of Medicine, Seattle
    JAMA Netw Open. 2019;2(10):e1913115. doi:10.1001/jamanetworkopen.2019.13115
    Key Points español 中文 (chinese)

    Question  What is the association of family-rated quality of end-of life care with stopping maintenance dialysis treatments and receipt of hospice services before death?

    Findings  In this survey study of family members of patients with end-stage renal disease who were undergoing maintenance dialysis, the adjusted predicted probability of family rating the quality of end-of-life care as excellent was higher for patients who stopped dialysis before death than for patients who did not stop dialysis (54.9% vs 45.9%). Among patients who did not stop dialysis, receipt of hospice services was associated with a higher probability of the patient’s family rating the quality of end-of-life care as excellent (60.5% vs 40.0%).

    Meaning  Preparing patients for end-of-life decision-making and improving access to concurrent receipt of dialysis and hospice services may help to improve the quality of end-of-life care for patients undergoing dialysis for end-stage renal disease.


    Importance  Approximately 1 in 4 patients receiving maintenance dialysis for end-stage renal disease eventually stop treatment before death. Little is known about the association of stopping dialysis and quality of end-of-life care.

    Objectives  To evaluate the association of stopping dialysis before death with family-rated quality of end-of-life care and whether this association differed according to receipt of hospice services at the time of death.

    Design, Setting, and Participants  This survey study included data from 3369 patients who were treated with maintenance dialysis at 111 Department of Veterans Affairs medical centers and died between October 1, 2009, to September 30, 2015. Data set construction and analyses were conducted from September 2017 to July 2019.

    Exposure  Cessation of dialysis treatment before death.

    Main Outcomes and Measures  Bereaved Family Survey ratings.

    Results  Among 3369 patients included, the mean (SD) age at death was 70.6 (10.2) years, and 3320 (98.5%) were male. Overall, 937 patients (27.8%) stopped dialysis before death and 2432 patients (72.2%) continued dialysis treatment until death. Patients who stopped dialysis were more likely to have been receiving hospice services at the time of death than patients who continued dialysis (544 patients [58.1%] vs 430 patients [17.7%]). Overall, 1701 patients (50.5%) had a family member who responded to the Bereaved Family Survey. In adjusted analyses, families were more likely to rate overall quality of end-of-life care as excellent if the patient had stopped dialysis (54.9% vs 45.9%; risk difference, 9.0% [95% CI, 3.3%-14.8%]; P = .002) or continued to receive dialysis but also received hospice services (60.5% vs 40.0%; risk difference, 20.5% [95% CI, 12.2%-28.9%]; P < .001).

    Conclusions and Relevance  This survey study found that families rated overall quality of end-of-life care higher for patients who stopped dialysis before death or continued dialysis but received concurrent hospice services. More work to prepare patients for end-of-life decision-making and to expand access to hospice services may help to improve the quality of end-of-life care for patients with end-stage renal disease.