More patients undergoing maintenance haemodialysis for kidney disease have expressed a preference for a comfort-focused treatment over one that lengthens their life as much as possible in a new study published in JAMA Internal Medicine. The findings suggest “important opportunities to improve the quality of care” of dialysis patients, say lead author Susan P Y Wong (University of Washington, Seattle, USA) and colleagues.
The style of care given to maintenance dialysis patients, Wong et al argue, can be particularly intensive compared even with patients suffering from other serious diseases. They are more likely to spend time in intensive care units, more likely to die in hospital and less likely to receive hospice care. There is evidence, however, that this is not in step with patient preferences, with a previous JAMA Internal Medicine-published study, also led by Wong, among several suggesting that treatment choices for end-of-life dialysis patients “are more strongly and consistently associated with system-level and healthcare professional–level factors than with individual patient characteristics”.
In this study, Wong et al took particular interest not only in whether patients preferred intensive or comfort-focused care, but also whether such a preference showed in how they perceived or prepared for end-of-life care. To that end, they designed a survey study that included questions on both “a range of aspects of end-of-life care” and “level of engagement in advance planning” among haemodialysis patients. The survey was completed in the period 2015–2018 by 1,006 patients from 31 non-profit and not-for-profit dialysis centres in the greater metropolitan areas of Seattle and Nashville, USA. The patients’ survey responses were then linked to their data in the United States Renal Data System (USRDS), with a final analytical cohort of 933.
Participating patients had a mean age of 62.6 years, while 525 (56.3%) were male and 254 (27.2%) were Black. In total, 452 (48.4%) stated they would prefer comfort-focused care, 179 (19.2%) that they would value longevity-focused care, and 302 (32.4%) that they were “unsure which of these they would prefer”.
However, these differences “did not translate into substantial differences in either engagement in advance care planning or end-of-life care.” A large proportion did not have a designated surrogate decision-maker (estimated probability, 47.5%; 95% confidence interval [CI] 42.9%-52.1%). There was not a significant difference in rates of discussion of hospice care or in discussion of stopping dialysis.
Reviewing the findings, the authors note the higher likelihood set out the challenge suggested by the results: “Advance care planning is a proactive process that aims to clarify patients’ values, goals, and preferences for future medical care to ensure that each individual receives care that is aligned with what is most important to them. Our findings speak to the obstacles to achieving this ideal and important targets for intervention to improve advance care planning in this population.”