Family involvement in making decisions about whether patients with ESRD should forego or withdraw dialysis is a challenge for practicing nephrologists, according to a published study.
“Shared decision-making may be particularly complex for the older patient with ESRD, in part because of family involvement,” Vanessa Grubbs, MD, of the department of medicine at the University of California, San Francisco, and colleagues wrote. “This study focuses on the perspectives of nephrologists in England and the United States regarding the ways in which family members facilitate or impede decisions to appropriately forego or withdraw dialysis therapy. Understanding these influences could help nephrologists engage in more effective shared decision-making.”
Researchers conducted interviews with 59 nephrologists (57.6% were aged 45 years or younger; 76.3% were men; 59.3% were white; 41 were from the United States; 18 were from England) between June 2013 and June 2014. The interviews focused on nephrologists’ experiences with treatment decisions for patients with ESRD, primarily considering situations that involved foregoing dialysis or dialysis therapy withdrawal.
Researchers first separated the comments based on whether they described the family’s role as “impeding” or “facilitating” the decision to forego or withdraw dialysis. The comments were then categorized into one of four themes including emotional responses in decision-making, involvement in and awareness of patient’s illness status, trust in physicians and acceptance of patient wishes.
When reviewing comments related to family impeding decisions, researchers found nephrologists in both countries felt that decisions to pursue dialysis were based on complex emotions that often did not appropriately weigh the benefits and harms of continuing dialysis and that family members sometimes lacked knowledge about the realities of dialysis. In addition, nephrologists noted that families’ lack of trust in the physician contributed to their unwillingness to forego or withdraw dialysis therapy and that families were sometimes also not willing to accept patient decisions despite patient suffering.
In terms of families facilitating the decision to forego or withdraw dialysis, researchers found nephrologists in both countries described that family members who were highly involved in the patient’s care and had witnessed the patient’s illness trajectory were more likely to facilitate the decision to forego or withdraw dialysis. In addition, families who had trust in the nephrologist’s recommendations and those who focused on patient wishes rather than their own were more likely to facilitate this decision.
Family involvement in making decisions about whether patients with ESRD should forego or withdraw dialysis is a challenge for practicing nephrologists.
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Finally, researchers found only nephrologists in the United States mentioned families’ financial dependence on patients as an impediment to foregoing or withdrawing dialysis therapy.
“This study demonstrates that while much emphasis is placed on the need for more patient-centered communication skills training in nephrology fellowship programs, practicing nephrologists struggle with negotiating decision-making with patients’ families as well,” the researchers wrote. “Training in family-centered relationship building, communication, and skills to navigate conflictual decision-making within families is essential for the current nephrology work force and for the next generation of nephrologists.” – by Melissa J. Webb
Disclosures: The authors report no relevant financial disclosures.