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. 2023 May 1;183(5):462-469.
doi: 10.1001/jamainternmed.2023.0265.

Value Placed on Comfort vs Life Prolongation Among Patients Treated With Maintenance Dialysis

Susan P Y Wong  1 , David K Prince  1 , Manjula Kurella Tamura  2 , Yoshio N Hall  1 , Catherine R Butler  1 , Ruth A Engelberg  1 , Elizabeth K Vig  1 , J Randall Curtis  2   3 , Ann M O'Hare  1
Affiliations

Value Placed on Comfort vs Life Prolongation Among Patients Treated With Maintenance Dialysis

Susan P Y Wong et al. JAMA Intern Med. .

Abstract

Importance: Patients receiving maintenance dialysis experience intensive patterns of end-of-life care that might not be consistent with their values.

Objective: To evaluate the association of patients' health care values with engagement in advance care planning and end-of-life care.

Design, setting, and participants: Survey study of patients who received maintenance dialysis between 2015 and 2018 at dialysis centers in the greater metropolitan areas of Seattle, Washington, and Nashville, Tennessee, with longitudinal follow-up of decedents. Logistic regression models were used to estimate probabilities. Data analysis was conducted between May and October 2022.

Exposures: A survey question about the value that the participant would place on longevity-focused vs comfort-focused care if they were to become seriously ill.

Main outcomes and measures: Self-reported engagement in advance care planning and care received near the end of life through 2020 using linked kidney registry data and Medicare claims.

Results: Of 933 patients (mean [SD] age, 62.6 [14.0] years; 525 male patients [56.3%]; 254 [27.2%] identified as Black) who responded to the question about values and could be linked to registry data (65.2% response rate [933 of 1431 eligible patients]), 452 (48.4%) indicated that they would value comfort-focused care, 179 (19.2%) that they would value longevity-focused care, and 302 (32.4%) that they were unsure about the intensity of care they would value. Many had not completed an advance directive (estimated probability, 47.5% [95% CI, 42.9%-52.1%] of those who would value comfort-focused care vs 28.1% [95% CI, 24.0%-32.3%] of those who would value longevity-focused care or were unsure; P < .001), had not discussed hospice (estimated probability, 28.6% [95% CI, 24.6%-32.9%] comfort focused vs 18.2% [95% CI, 14.7%-21.7%] longevity focused or unsure; P < .001), or had not discussed stopping dialysis (estimated probability, 33.3% [95% CI, 29.0%-37.7%] comfort focused vs 21.9% [95% CI, 18.2%-25.8%] longevity focused or unsure; P < .001). Most respondents wanted to receive cardiopulmonary resuscitation (estimated probability, 78.0% [95% CI, 74.2%-81.7%] comfort focused vs 93.9% [95% CI, 91.4%-96.1%] longevity focused or unsure; P < .001) and mechanical ventilation (estimated probability, 52.0% [95% CI, 47.4%-56.6%] comfort focused vs 77.9% [95% CI, 74.0%-81.7%] longevity focused or unsure; P < .001). Among decedents, the percentages of participants who received an intensive procedure during the final month of life (estimated probability, 23.5% [95% CI, 16.5%-31.0%] comfort focused vs 26.1% [95% CI, 18.0%-34.5%] longevity focused or unsure; P = .64), discontinued dialysis (estimated probability, 38.3% [95% CI, 32.0%-44.8%] comfort focused vs 30.2% [95% CI, 23.0%-37.8%] longevity focused or unsure; P = .09), and enrolled in hospice (estimated probability, 32.2% [95% CI, 25.7%-38.7%] comfort focused vs 23.3% [95% CI, 16.4%-30.5%] longevity focused or unsure; P = .07) were not statistically different.

Conclusions and relevance: This survey study found that there appeared to be a disconnect between patients' expressed values, which were largely comfort focused, and their engagement in advance care planning and end-of-life care, which reflected a focus on longevity. These findings suggest important opportunities to improve the quality of care for patients receiving dialysis.

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Conflict of interest statement

Conflict of Interest Disclosures: Dr Wong reported receiving grants from the National Institutes of Health, the National Palliative Care Research Center, and the Doris Duke Charitable Foundation during the conduct of the study. Dr Engelberg reported receiving grants from the National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Diseases during the conduct of the study. Dr Curtis reported receiving grants from the National Institutes of Health and the Cambia Health Foundation during the conduct of the study. Dr O’Hare reported receiving grants from the National Institutes of Diabetes and Digestive and Kidney Disease during the conduct of the study and from Veterans Affairs Health Services Research and Development Service outside the submitted work; travel fees from JAMA Internal Medicine to editorial board meeting; and personal and travel fees from University of California, San Francisco to deliver a lecture. No other disclosures were reported.

Figures

Figure 1.
Figure 1.. Cohort Derivation
USRDS indicates United States Renal Data System.
Figure 2.
Figure 2.. Estimated Probabilities of Advance Care Planning Engagement Among Maintenance Dialysis Patients
Error bars indicate 95% CIs. CPR indicates cardiopulmonary resuscitation.
Figure 3.
Figure 3.. Estimated Probabilities of End-of-Life Care Among Maintenance Dialysis Patients
Error bars indicate 95% CIs. CPR indicates cardiopulmonary resuscitation. aValues based on decedents with continuous Medicare Parts A and B during final month of life.
See this image and copyright information in PMC

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