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Patients on dialysis believe they will live longer than real-world data suggest
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Surveyed patients undergoing dialysis were either uncertain or overly optimistic about their prognosis, frequently estimating life expectancy to be longer than is likely, according to a recently published study.
“People with advanced kidney disease who undergo maintenance dialysis have limited life expectancy,” Ann M. O’Hare, MD, of the University of Washington and the VA Puget Sound Health Care System in Seattle, and colleagues wrote. “Compared with other seriously ill populations, rates of advance care planning among members of this population are lower and patterns of end-of-life care are more focused on life prolongation. Prior studies suggest that people with advanced kidney disease tend to have overly optimistic expectations about the future. However, these earlier studies were limited because they did not frame prognosis in terms of life expectancy, offer patients an opportunity to indicate if they were uncertain about their prognosis, or provide a detailed characterization of how prognostic expectations relate to other domains of end-of-life care.”
Researchers surveyed 996 patients who were treated with regular dialysis at 31 nonprofit facilities in Seattle and Nashville between April 2015 and October 2018 (mean age, 62.7 years; 44% women).
Participants were asked how long they thought patients of a similar age and a similar health condition typically lived. Options ranged from less than 5 years to greater than 10 years or unsure.
Also considered were self-reported documentation of a surrogate decision-maker, documentation of treatment preferences, values around life prolongation, preferences for receipt of cardiopulmonary resuscitation and mechanical ventilation and desired place of death.
According to researchers, 60.3% of patients undergoing in-center dialysis in the U.S. died within 5 years, 19% died within 5 to 10 years and 20.7% lived more than 10 years.
In contrast to these statistics, 11.2% of participants surveyed selected a prognosis of less than 5 years, 15.1% selected 5 to 10 years and 33.1% selected more than 10 years. Of all respondents, 40.6% were unsure.
Researchers also found that survey respondents with a prognostic expectation of more than 10 years were less likely to report documentation of a surrogate decision-maker and treatment preferences than were those who had a prognostic expectation of less than 5 years.
Further, those who believed patients on dialysis live more than 10 years were more likely to value comfort over life extension and more likely to want cardiopulmonary resuscitation and mechanical ventilation. These responses were similar for those who were uncertain about prognostic expectation.
“In our survey of patients receiving dialysis, most respondents were either uncertain about prognosis or had highly optimistic prognostic expectations when viewed in the context of actuarial survival in the U.S. hemodialysis population,” the researchers concluded. “More optimistic and uncertain prognostic expectations were significantly associated with less engagement in advance care planning and preferences for life-extending treatment choices, which suggests that these expectations may limit the benefit of advance care planning and contribute to intensive and costly patterns of end-of-life care in this population. These findings highlight the need for a deeper understanding of what drives the prognostic expectations of patients undergoing dialysis and call for efforts to raise prognostic awareness and manage prognostic uncertainty.” – by Melissa J. Webb
Disclosures: O’Hare reports receiving grants from the National Institute of Diabetes and Digestive and Kidney Diseases and grants from the VA Health Services Research and Development Service and Centers for Disease Control and Prevention. Please see the study for all other authors’ relevant financial disclosures.
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