Send to

Choose Destination
JAMA Intern Med. 2019 Jul 8. doi: 10.1001/jamainternmed.2019.2879. [Epub ahead of print]

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

Author information

Department of Medicine, University of Washington, Seattle.
Kidney Research Institute, University of Washington, Seattle.
VA Puget Sound Health Care System, Seattle, Washington.
Stanford University Medical Center, Palo Alto, California.
Division of Nephrology, Geriatric Research, Education and Clinical Center, VA Palo Alto Health Care System, Palo Alto, California.
Department of Surgery, University of Washington, Seattle.
Department of Anthropology, University of Washington, Seattle.
Cambia Palliative Care Center of Excellence, University of Washington, Seattle.



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.


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.


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.


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.

Supplemental Content

Full text links

Icon for Silverchair Information Systems Icon for PubMed Central
Loading ...
Support Center