Assessment of Self-reported Prognostic Expectations of People Undergoing Dialysis: United States Renal Data System Study of Treatment Preferences (USTATE)

Abstract

Importance: Prognostic understanding can shape patients' treatment goals and preferences. Patients undergoing dialysis in the United States have limited life expectancy and may receive end-of-life care directed at life extension. Little is known about their prognostic expectations.

Objective: To understand the prognostic expectations of patients undergoing dialysis and how these relate to care planning, goals, and preferences.

Design, setting, and participants: Cross-sectional survey study of 996 eligible patients treated with regular dialysis at 31 nonprofit dialysis facilities in 2 metropolitan areas (Seattle, Washington, and Nashville, Tennessee) between April 2015 and October 2018. After a pilot phase, 1434 eligible patients were invited to participate (response rate, 69.5%). To provide a context for interpreting survey participants' prognostic estimates, United States Renal Data System standard analysis files were used to construct a comparison cohort of 307 602 patients undergoing in-center hemodialysis on January 1, 2006, and followed for death through July 31, 2017. Final analyses for this study were conducted between November 2018 and March 2019.

Exposures: Responses to the question "How long would you guess people your age with similar health conditions usually live?" (<5 years, 5-10 years, >10 years, or not sure).

Main outcomes and measures: Self-reported (1) documentation of a surrogate decision-maker, (2) documentation of treatment preferences, (3) values around life prolongation, (4) preferences for receipt of cardiopulmonary resuscitation and mechanical ventilation, and (5) desired place of death.

Results: Of the 996 survey respondents, the mean (SD) age was 62.7 (13.9) years, and 438 (44.0%) were women. Overall, 112 (11.2%) survey respondents selected a prognosis of fewer than 5 years, 150 (15.1%) respondents selected 5 to 10 years, 330 (33.1%) respondents selected more than 10 years, and 404 (40.6%) were not sure. By comparison, 185 427 (60.3%) prevalent US in-center patients undergoing hemodialysis died within 5 years, 58 437 (19.0%) died within 5 to 10 years, and 63 738 (20.7%) lived more than 10 years. In analyses adjusted for participant characteristics, survey respondents with a prognostic expectation of more than 10 years (vs <5 years) were less likely to report documentation of a surrogate decision-maker (adjusted odds ratio [aOR], 0.6; 95% CI, 0.4-0.9) and treatment preferences (aOR, 0.4; 95% CI, 0.2-0.6) and to value comfort over life extension (aOR, 0.1; 95% CI, 0.04-0.3), and were more likely to want cardiopulmonary resuscitation (aOR, 5.3; 95% CI, 3.2-8.7) and mechanical ventilation (aOR, 2.2; 95% CI, 1.2-3.7). The respondents who reported that they were not sure about prognosis had similar associations.

Conclusions and relevance: Uncertain and overly optimistic prognostic expectations may limit the benefit of advance care planning and contribute to high-intensity end-of-life care in patients undergoing dialysis.

Conflict of interest statement

Conflict of Interest Disclosures: Dr O’Hare reports receiving grants from the National Institute of Diabetes and Digestive and Kidney Diseases during the conduct of the study; grants from the VA Health Services Research and Development Service and Centers for Disease Control and Prevention outside of the submitted work; and personal fees from Dialysis Clinic, Inc; Fresenius Medical Care; the University of Pennsylvania; the University of Alabama at Birmingham; Hammersmith Hospital, London, United Kingdom; UpToDate; and the American Society of Nephrology for her role as an associate editor of the Clinical Journal of the American Society of Nephrology. Dr Kurella Tamura reports receiving personal fees from Alkahest outside of the submitted work. Dr Taylor reports receiving grants from the National Institute of Diabetes and Digestive and Kidney Diseases during the conduct of the study. Dr Hall reports receiving grants from the National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Diseases during the conduct of the study. Dr Katz reports receiving grants from the National Institutes of Health during the conduct of the study. No other disclosures are reported.

Figures

Figure 1.. Prognostic Expectations of Survey Participants Overall and Stratified by Age and Self-reported Health Status

Figure 2.. Prognostic Expectations of Survey Participants and Actuarial Survival Among Prevalent US In-Center Patients Undergoing Hemodialysis

To facilitate comparisons across groups, survey participants who were not sure of their prognosis are excluded.

Figure 3.. Adjusted Association of Prognostic Expectations With Engagement in Advance Care Planning, Values Around Life Prolongation, Treatment Preferences, and Preferred Place of Death

For responses to the question on values, those valuing comfort and those who were uncertain were compared with the reference group of those valuing life prolongation. Analyses are adjusted for self-reported age, sex, race and ethnicity, health status, time undergoing dialysis, highest educational level, and spirituality. CPR indicates cardiopulmonary resuscitation.