Nephrologists' emotional burden regarding decision-making about dialysis initiation in older adults: a qualitative study

Background Conservative management, an approach to treating end-stage kidney disease without dialysis, while generally associated with shorter life expectancy than treatment with dialysis, is associated with fewer hospitalizations, better functional status and, potentially, better quality of life. Conservative management is a well-established treatment approach in a number of Western countries, including the United Kingdom (U.K.). In contrast, despite clinical practice guidelines in the United States (U.S.) recommending that nephrologists discuss all treatment options, including conservative management, with stage 4 and 5 chronic kidney disease patients, studies suggest that this rarely occurs. Therefore, we explored U.S. nephrologists' approaches to decision-making about dialysis and perspectives on conservative management among older adults. Methods We conducted a qualitative research study. We interviewed 20 nephrologists - 15 from academic centers and 5 from community practices - utilizing a semi-structured interview guide containing open-ended questions. Interview transcripts were analyzed using grounded thematic analysis in which codes were generated inductively and iteratively modified, and themes were identified. Transcripts were coded independently by two investigators, and interviews were conducted until thematic saturation. Results Twenty nephrologists (85% white, 75% male, mean age 50) participated in interviews. We found that decision-making about dialysis initiation in older adults can create emotional burden for nephrologists. We identified four themes that reflected factors that contribute to this emotional burden including nephrologists' perspectives that: 1) uncertainty exists about how a patient will do on dialysis, 2) the alternative to dialysis is death, 3) confronting death is difficult, and 4) patients do not regret initiating dialysis. Three themes revealed different decision-making strategies that nephrologists use to reduce this emotional burden: 1) convincing patients to "just do it" (i.e. dialysis), 2) shifting the decision-making responsibility to patients, and 3) utilizing time-limited trials of dialysis. Conclusions A decision not to start dialysis and instead pursue conservative management can be emotionally burdensome for nephrologists for a number of reasons including clinical uncertainty about prognosis on dialysis and discomfort with death. Nephrologists' attempts to reduce this burden may be reflected in different decision-making styles - paternalistic, informed, and shared decision-making. Shared decision-making may relieve some of the emotional burden while preserving patient-centered care.