Many older dialysis patients involved in a qualitative study said they felt voiceless in the decision-making process and were unaware of more conservative management approaches that could help them avoid initiating dialysis.

The qualitative study, led by Tufts University researchers, involved interviewing 31 dialysis patients in the greater Boston area. The researchers interviewed 23 in-center hemodialysis patients, one home hemodialysis patient and seven peritoneal dialysis patients, with a mean age of 76.

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The study, published online in Nephrology Dialysis Transplantation in advance of print, also found that patients who perceived they did not have a choice in starting dialysis reported low satisfaction with the treatment, despite acknowledging its life-extending benefits.

“For some patients, dialysis may be the best treatment that aligns with their preferences and goals. But our study found that many of our respondents did not know that starting dialysis was voluntary and that they had a different option,” said Keren Ladin, PhD, first author on the paper. Ladin is an assistant professor in the Department of Occupational Therapy at the Graduate School of Arts and Sciences and the Department of Public Health and Community Medicine at Tufts University School of Medicine. “Patient-centered care requires better communication between patients and providers, including better understanding how potential treatments may affect patients’ goals of care and lifestyle preferences.”

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The study found that key decision-making factors for patients include: independence, ability to travel, social participation, not burdening loved ones, continuing meaningful activities, and avoiding pain and fatigue.

The researchers found multiple barriers to shared decision-making, including:

  • A perception among patients that dialysis was necessary to prevent imminent death;
  • A perception among patients that the decision to begin dialysis was solely up to their physicians;
  • A lack of communication of important prognostic information for the patient from a doctor; and
  • A patient’s deference to the views of clinicians and family members who often override a patient’s expressed preferences, fueled by a desire to be a “good patient.”

Most patients who said they felt less engaged in the decision-making process reported feeling dissatisfied with their treatment outcomes. Many focused on unexpected setbacks from dialysis and expressed feelings of distress about the impact of the treatment on their independence and overall energy.

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By contrast, the research found that patients reported actively making choices between peritoneal dialysis and hemodialysis. In this process, most patients reported their choice involved careful research and conversations with clinicians and family members.

“While we cannot cure ESRD at this point, we can help patients achieve their goals and live out their last state of life according to their wishes,” said Ladin.