Study identifies factors linked to dialysis regret, highlights need for care discussions
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Patients who reported feelings of regret regarding their decision to initiate dialysis were more likely to have chosen the treatment to “please” others, highlighting the need for robust patient involvement in care discussions.
Fahad Saeed, MD, of the University of Rochester, and colleagues, wrote that the few studies examining regret after dialysis initiation have taken place outside of the United States. As such, they suggested, the results are not generalizable to U.S. patients due to differing chronic kidney disease education programs and a lack of racially diverse cohorts (for instance, 80% of participants in a Canadian study were white).
“Racial differences exist in patient–physician communication and level of engagement in decision-making; these differences potentially predispose black patients to higher regret with dialysis decision-making,” the researchers argued. “Therefore, it is critical to study this issue in a racially diverse cohort of patients.”
For the study, a questionnaire was administered to 397 patients undergoing maintenance dialysis in Cleveland, Ohio (289 patients identified as non-white). Survey items explored patient demographics (eg, age, sex, race and education level), as well as patient attitudes toward medical decision-making, future care and modifiable care process. More specifically, the researchers assessed patient knowledge of kidney disease and its future trajectory, the importance of quality of life in determining future care, thoughts about the importance of knowing prognosis, previous prognostic discussions and previous advance care planning.
Dialysis regret was measured by one question: “Do you regret your decision to start dialysis?”
Results showed 21% of total respondents regretted their decision to initiate dialysis. While age, sex, dialysis modality and length of time on dialysis were not significantly associated with regret, the researchers found that race was, with 18% of white patients regretting the decision vs. 82% of non-white patients.
Regarding reasons for regret, survey results indicated patients were more likely to regret choosing dialysis over conservative management if they did so to please doctors or family members (odds ratio = 2.34).
According to the researchers, this finding suggests patients may have simply been acquiescing to “polite suggestions,” or they may have felt pressured to begin treatment. “In either scenario,” the researchers wrote, “it is unlikely that patients genuinely wanted the treatment or understood its full effect on their lives.”
On the other hand, the survey revealed patients who had prognostic discussions with their doctors about how long they would live or who had completed a living will were less likely to report regretting dialysis (OR = 0.42 and OR = 0.48, respectively).
The differences in attitudes between patients who regretted their decision to initiate dialysis and those who did not led the researchers to emphasize the importance of patient autonomy in medical decision-making.
“Although a patient’s sense of autonomy in decision-making is associated with good quality of life after dialysis initiation, few kidney failure patients report a high sense of autonomy during the decision-making process,” they noted. “Most report that ‘it just happened,’ without them feeling like they made a proactive, considered and self-directed choice.”
Further, the researchers contended nephrologists could minimize decisional regret by having more discussions about prognosis and end-of-life planning with both patients and their families.
“Communication interventions to train nephrologists in dialysis decision-making are urgently needed,” they concluded.
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