Sixty percent of nephrologists don't feel well prepared to make the decision to stop dialysis in kidney disease patients nearing the end of life , reports a study in the November Clinical Journal of the American Society of Nephrology.
Nephrologists who are more experienced and more familiar with the formal guidelines for end-of-life decision making—developed by the Renal Physicians Association and the American Society of Nephrology (RPA/ASN)—are better prepared, concludes the study, led by Dr. Sara N. Davison of University of Alberta, Edmonton, Canada.
The researchers analyzed responses to a questionnaire regarding end-of-life decision-making by 360 American and Canadian nephrologists. Just 39 percent said they felt "very well prepared" to make the decision to withhold or withdraw dialysis in patients with kidney disease nearing the end of life.
Another key factor was awareness of the RPA/ASN guidelines for end-of-life care. Seventy percent of nephrologists who were comfortable with end-of-life decision making were familiar with the guidelines, compared with 52 percent of those who were less comfortable.
One important difference was in preparation to stop dialysis in a patient who had developed permanent and severe dementia—a common situation in patients with kidney disease nearing the end of life. Two-thirds of well-prepared physicians said they were likely to stop dialysis in this situation, compared with just half of nephrologists who rated themselves less well prepared. Handling of other situations covered by the guidelines—eg, a permanently unconscious patient or a request by a patient who was competent to make such a request—was similar between groups.
Despite continuing technological improvements in care, more than 80,000 chronic dialysis patients die each year in the United States, with an annual mortality rate of up to 25 percent per year. Increasingly, kidney specialists play a central role in making decisions, along with patients and/or families, about withholding or withdrawing dialysis. "Unfortunately, these discussions often occur late in illness, when patients are suffering and are often too ill to make decisions for themselves," says Dr. Davison. "In fact, patients often do not know that they have the option to withdraw from dialysis, while others erroneously believe that their physician would not support such an option."
The results show that clinical experience is more important than education in preparing nephrologists to deal with these complex decisions. "This is not surprising, given that end-of-life care is not well addressed in nephrology specialty training programs," Dr. Davison adds.
Many health professionals believe that end-of-life discussions may destroy hope for dialysis patients. "In contrast, our recent research suggests that end-of-life discussions through the provision of timely, appropriate information can positively enhance rather than diminish patients' hope," says Dr. Davison. "Dialysis patients prefer that these conversations happen early in the illness and expect their physicians to initiate and guide the discussion—even if for some patients, much of the discussion occurs with family members, outside the patient-physician relationship."