**Background:** Patients receiving maintenance dialysis experience intensive end-of-life care, including high rates of hospitalization, ICU admission, CPR, mechanical ventilation, and in-hospital death, with lower rates of hospice use compared to other seriously ill populations. Prior evidence suggests this pattern may be incongruent with patient values, but little is known about how patients' prioritization of comfort vs longevity relates to advance care planning or actual end-of-life care.
**Methods:** The authors conducted a survey study of a pragmatic consecutive sample of adults receiving maintenance dialysis at 31 nonprofit and not-for-profit dialysis units in the Seattle, WA and Nashville, TN metropolitan areas between 2015 and 2018. Surveys were administered in person during dialysis sessions. Patients were asked: "If you were to become very sick in the future and were unable to speak for yourself, would you prefer a plan of medical care that focuses on extending life as much as possible, even if it means having more pain and discomfort, or would you want medical care that focuses on relieving pain and discomfort as much as possible, even if that means not living as long?" Patients could also indicate they were unsure. Survey data were linked to the United States Renal Data System (USRDS) for demographic/clinical characteristics and end-of-life outcomes. Of 1431 eligible patients invited, 1006 completed the survey; after exclusions (6 missing values question, 9 missing name/DOB, 58 unable to link to USRDS), the final analytical cohort comprised 933 patients (65.2% of those invited). The mean (SD) age was 62.6 (14.0) years; 56.3% were male; 27.2% identified as Black. Statistical analyses used logistic regression models adjusted for age, race, and gender, with 95% CIs calculated using quantile-based bootstrapped samples with 10,000 iterations.
**Key Results:** Of 933 patients, 452 (48.4%) indicated they would value comfort-focused care, 179 (19.2%) valued longevity-focused care, and 302 (32.4%) were unsure. Patients valuing comfort-focused care were older (mean age 66 vs 59 years; P<.001), less likely to identify as Black (estimated probability 41.6% vs 58.4%; P=.002), more likely to have some college education (51.5% vs 48.5%; P=.045), and more likely to have vascular disease (54.2% vs 45.8%; P=.02). Regarding advance care planning: 52.3% of comfort-focused vs 45.4% of longevity-focused/unsure patients had documented a surrogate decision-maker (P=.03); 47.5% vs 28.1% had signed documents indicating treatment preferences (P<.001); 33.3% vs 21.9% had discussed stopping dialysis (P=.001); 28.6% vs 18.2% had discussed hospice (P<.001). However, most patients in both groups wanted CPR (78.0% comfort-focused vs 93.9% longevity-focused/unsure; P<.001) and mechanical ventilation (52.0% vs 77.9%; P<.001). Most preferred to die at home (63.5% vs 55.5%; P=.02). During follow-up through September 2020, 377 participants (40.4%) died. Among decedents, there were no statistically significant differences in dialysis discontinuation (38.3% vs 30.2%; P=.09), hospice receipt (32.2% vs 23.3%; P=.07), or in-hospital death (55.7% vs 52.0%; P=.48). Among 239 decedents with Medicare coverage in the final month, there were no significant differences in hospitalization (71.8% vs 76.2%; P=.45), CPR (9.9% vs 15.5%; P=.18), mechanical ventilation (19.4% vs 19.0%; P=.94), or receipt of any intensive procedure (23.5% vs 26.1%; P=.64).
**Clinical Implications:** This study demonstrates a substantial disconnect between patient values and both advance care planning engagement and actual end-of-life care among patients receiving maintenance dialysis. Despite nearly half of patients expressing a preference for comfort-focused care, most had not documented treatment preferences, discussed hospice or dialysis discontinuation, and most received intensive, life-prolonging care at the end of life regardless of their stated values. The findings suggest that current health system defaults favoring aggressive care may override patient preferences, and that advance care planning alone may be insufficient to ensure goal-concordant care. The authors highlight the need for interventions to improve the quality and timing of goals-of-care discussions and to address system-level factors that default toward life-prolonging treatments.