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

Abstract

ImportancePatients receiving maintenance dialysis experience intensive patterns of end-of-life care that might not be consistent with their values.ObjectiveTo evaluate the association of patients’ health care values with engagement in advance care planning and end-of-life care.Design, Setting, and ParticipantsSurvey 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.ExposuresA 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 MeasuresSelf-reported engagement in advance care planning and care received near the end of life through 2020 using linked kidney registry data and Medicare claims.ResultsOf 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 RelevanceThis 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.

Older people’s goals of care in relation to frailty status—the COOP-study

“…When diving into which goals of care matter to older people when being ill, we replicate findings on the paramount importance of ageing in place [ 22 , 32 ], independence [ 11–14 , 32 , 33 ] and QoL [ 14 , 33 ], as well as the relative unimportance of life extension [ 14 , 15 , 32 ], and extend them to the general older population. In contrast, the utmost prioritisation of preserving QoL seems more unified in our community-based sample (51%) than in frail older people following recent acute illness (15%), who most frequently considered preventing hospital admission as their single most important goal (20%) [ 14 ].…”

“…Previous studies on goals of care among the older population focused on specific subsets of older people: those living with frailty [ 14 ] or multimorbidity [ 13 , 32 , 33 ] or patients facing severe disease [ 11 , 12 , 15 , 33 ]. We primarily add to this body of literature by including the general older population and by comparing large subgroups along the wide spectrum of frailty ranging from fit to severely frail.…”

A National Survey of Conservative Kidney Management Practices for Patients Who Forgo RRT

“…Complementary efforts to educate patients about CKM as a viable alternative to RRT can also help to facilitate patient-provider conversations and encourage a collaborative approach to considering CKM. 32,39,40 Collectively, our findings highlight the effect of ongoing efforts to shift the tide in provider attitudes and experiences with caring for patients who forgo RRT.…”

Association Between Person-Centered Care Quality and Advance Care Planning Participation in Patients Undergoing Hemodialysis: A Multicenter Cross-Sectional Study

“…First, we did not inquire about detailed life-extending treatments such as discontinuation of dialysis therapy or other invasive treatments. 2,36 Indeed, previous studies pointed out that patients with kidney failure who completed advance directives typically do not mention discontinuation of dialysis therapy within them. 20 Second, it might be obvious that person-centered care, as measured by the JPCAT-SF, and ACP participation has an association because the item about the availability of counseling on one’s end of life is included in the JPCAT-SF subdomain of comprehensiveness (service available).…”