Assessment of Self-reported Prognostic Expectations of People Undergoing Dialysis

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.

Perceptions of Illness Severity, Treatment Goals, and Life Expectancy: The ePISTLE Study

“…As with existing studies, 2 , 7 , 15 , 28 , 29 , 30 , 31 we found that recruited patients were significantly more optimistic of their PLE than their clinicians. Unlike in previous studies, we found no relationship between gender and increasing age in predicting a lower PLE.…”

“…Previous studies exploring perceived prognosis in patients on hemodialysis have all been based in North America, 2 , 7 , 29 , 30 , 31 where palliative care and nephrology are often viewed as distinct and opposing care options. 35 Practice in the United Kingdom has changed significantly over the last 2 decades, with a greater acceptance and desire for symptom control and palliative care input in patients with advanced kidney disease.…”

“…Previous studies have shown that patients who overestimate their long-term prognosis tend to opt for more aggressive treatment measures and life-extending therapy. 2 , 5 , 6 , 7 Effects of this on an individual can include higher morbidity, increased hospital stays, and a reduction in general well being. Alongside this, there are consequences of individual treatment choices on the wider health care system: a better understanding of factors influencing PLE and the interactions between patient prognostic beliefs, experiences of illness, and treatment behavior is urgently needed.…”

Nutrition-Based Management of Inflammaging in CKD and Renal Replacement Therapies

“…Also, clinical depression is characterized by increased systemic inflammation, suggesting a possible influence on mental health and wellbeing [14]. These associations with poor outcomes have also been reported in other studies, suggesting the pattern of a multisystemic frailty condition [15,16].…”

Capsule Commentary on Butler et al., “Ethical concerns in the care of patients with advanced kidney disease: a national retrospective study, 2000-2011”

“…Recently, O'Hare et al reported that only 11% of people receiving dialysis thought their prognosis could be less than 5 years when data demonstrates that 60% of patients on dialysis who don't get a renal transplant die within 5 years. 3 These kinds of mismatch in prognostic understanding and benefit and dangers of dialysis, particularly in those with complex illness, are a likely nidus for ethical conflict. An additional issue that must be considered and studied is that of implicit bias as a source of conflict when providers and patients and families have vastly different backgrounds.…”