Patients receiving maintenance dialysis have high rates of hospitalization and admission to nursing homes. Patients in that population also spend more time in intensive care unit and are more likely to receive intensive procedures such as cardiopulmonary resuscitation (CPR), mechanical ventilation, and artificial enteral nutrition during the final months of life compared with other groups of seriously ill patients. Patients treated with dialysis are also more likely to die in the hospital and less likely to receive hospice care.
According to Susan P. Y. Wong, MD, MS, and colleagues, there are few data available how the value placed on longevity versus comfort affects ways patients treated with dialysis view and prepare for serious illness or care they receive near the end of life. The researchers conducted a survey designed to examine the association between patients’ health care values and engagement in advance care planning and end-of-life care. Analyses of survey responses were reported in JAMA Internal Medicine.
The survey study included patients receiving 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. Probabilities were estimated using logistic regression models. Data analysis was conducted between May and October 2022.
The study exposure was a survey question regarding the value the participant would place on longevity-focused care versus comfort care if they were to become seriously ill. Survey participants were asked whether they had ever signed official documents such as an advance directive or a living will stating their preferences regarding treatment and surrogate decision-making in the event of serious illness. Specific questions included whether they had discussed stopping dialysis and hospice if they became sicker or if their goals changed.
The study cohort included 933 patients. Mean age was 62.6 years, 56.3% (n=525) were male, and 27.2% (n=254) identified as Black. Overall, 48.4% of the cohort (n=452) indicated they would value comfort-focused care, 19.2% (n=179) said they would value longevity-focused care, and 32.4% (n=302) said they were unsure which option they would prefer.
Compared with participants in the group that would value life prolongation and those who were unsure about what they would value, the group that would value comfort-focused care tended to be older (mean age, 66 years vs 59 years; P<.001) and included a lower proportion who identified as Black (estimated probability, 41.6% [95% CI, 35.8%-47.6%] comfort focused vs 58.4% [95% CI, 52.4%-64.2%] longevity focused; P=.002). The comfort-focused group also had a greater proportion of participants with at least some college education or more (estimated probability, 51.5% [95% CI, 47.1%-55.9%] comfort-focused vs 48.5% [95% CI, 44.1%-52.9%] longevity focused; P=.045) and vascular disease (estimated probability, 54.2% [95% CI, 48.3%-60.0%] comfort focused vs 45.8% [95% CI, 40.0%-52.7%] longevity focused; P=.02).
A higher proportion of participants in the group valuing comfort-focused care indicated they had a documented decision-maker compared with those in the group valuing longevity-focused care and those in the uncertain group (estimated probability, 52.3% [95% CI, 47.9%-56.8%] comfort focused vs 45.4% [95% CI, 41.0%-50.0%] longevity focused; P=.03).
Sixty-two percent of the overall cohort said they had not signed documents regarding their treatment preferences. Rates were significantly higher in the group that valued comfort-focused care (estimated probability, 47.5% [95% CI, 42.9%-52.1%] comfort focused vs 28.1% [95% CI, 24.0%-32.3%] longevity focused or unsure; P<.001). Most also indicated they had not discussed stopping dialysis or hospice (72.5%; n=676). Rates were higher for the group valuing comfort-based care for discussion of dialysis discontinuation (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).
End-of-Life Care
Follow-up continued through September 2020. During that time, 377 participants died. Of those, 57.3% (n=216) had indicated at the time of the survey they would value comfort-focused care, and 42.7% (n=161) that they would value longevity-focused care or were unsure of what kind of care they would value. There were no statistically significant differences among the three groups (comfort-focused care, longevity-focused care, or unsure) in the proportion who discontinued dialysis prior to death, received hospice services, or died in the hospital setting.
A total of 239 participants who died during follow-up through December 2019 had continuous Medicare Parts A and B coverage during the final month of life. Of those, 56.9% (n=136) had indicated they would value comfort-focused care, and 43.1% (n=103) had indicated they would value longevity-focused care or were unsure.
Rates of hospitalization were similar in those who valued comfort-focused care and those who valued longevity-focused care (estimated probability, 71.8% [64.0%-79.1%] comfort focused vs 76.2% [95% CI, 67.4%-84.1%] longevity focused or unsure; P=.45). Results were also similar among the groups for receipt of CPR, mechanical ventilation, or an intensive procedure during the final months of life as a function of how patients had responded to the questions about values. Point estimates were generally lower for participants in the group that valued comfort0focused care.
The researchers cited some limitations to the study findings, including using a single question that was based on a discrete choice model to elicit patients’ values regarding advance care planning and end-of-life care. In addition, treatments focused on comfort and those based on longevity are not mutually exclusive and some may be used to support both goals. It is also possible that the values expressed at the time of the survey may have changed at end of life. The study was conducted among English-speaking patients receiving hemodialysis primarily in dialysis centers from nonprofit and not-for-profit dialysis organizations in two metropolitan areas, possibly limiting the generalizability of the findings to the overall dialysis population. The small study sample size in the analyses of end-of-life care was also cited as a possible limitation.
In conclusion, the authors said, “In the large survey study of patients undergoing maintenance dialysis, most indicated that they would value a comfort-focused rather than longevity-focused approach to care if they were seriously ill. However, differences in how patients responded to the question about values did not translate into substantial differences in their engagement in advance care planning or the care they received at the end of life. These findings likely reflect the challenges to effective advance care planning and the presence of strong health system defaults favoring longevity-focused over comfort-focused care among members of this population. These findings also suggest important opportunities to better align the care that patients undergoing dialysis receive with their underlying values.”
Takeaway Points
- Researchers reported results of a survey study conducted among patients receiving maintenance dialysis examining the value the participants placed on longevity versus comfort in advance care planning and end-of-life care.
- The study included 933 patients receiving maintenance dialysis. Of those, 48.4% (n=452) indicated they would value comfort-based care, 19.2% (n=179) indicated they would value longevity-based care, and 32.4% (n=302) were unsure which they would prefer.
- Among participants who died during follow-up through September 2020, there were no statistically significant differences among the three groups in the proportion who discontinued dialysis prior to death, received hospice services, or died in the hospital setting.
Source: JAMA Internal Medicine
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