System-Level Barriers and Facilitators for Foregoing or Withdrawing Dialysis: A Qualitative Study of Nephrologists in the United States and England

Abstract

Background: Despite a growing body of literature suggesting that dialysis does not confer morbidity or mortality benefits for all patients with chronic kidney failure, the initiation and continuation of dialysis therapy in patients with poor prognosis is commonplace. Our goal was to elicit nephrologists' perspectives on factors that affect decision making regarding end-stage renal disease.

Study design: Semistructured, individual, qualitative interviews.

Methodology: Participants were purposively sampled based on age, race, sex, geographic location, and practice type. Each was asked about his or her perspectives and experiences related to foregoing and withdrawing dialysis therapy.

Analytical approach: Interviews were audiotaped, transcribed, and analyzed using narrative and thematic analysis.

Results: We conducted 59 semistructured interviews with nephrologists from the United States (n=41) and England (n=18). Most participants were 45 years or younger, men, and white. Average time since completing nephrology training was 14.2±11.6 (SD) years. Identified system-level facilitators and barriers for foregoing and withdrawing dialysis therapy stemmed from national and institutional policies and structural factors, how providers practice medicine (the culture of medicine), and beliefs and behaviors of the public (societal culture). In both countries, the predominant barriers described included lack of training in end-of-life conversations and expectations for aggressive care among non-nephrologists and the general public. Primary differences included financial incentives to dialyze in the United States and widespread outpatient conservative management programs in England.

Limitations: Participants' views may not fully capture those of all American or English nephrologists.

Conclusions: Nephrologists in the United States and England identified several system-level factors that both facilitated and interfered with decision making around foregoing and withdrawing dialysis therapy. Efforts to expand facilitators while reducing barriers could lead to care practices more in keeping with patient prognosis.

Keywords: Dialysis withdrawal; ESRD decision-making; chronic kidney failure; conservative care; conservative management; culture of medicine; end-of-life care; end-of-life issues; end-stage renal disease (ESRD); financial disincentives; foregoing dialysis; nephrology practice; palliative care; purposive sampling; qualitative methodology; quality of life (QoL); semi-structured interview; survival benefit; systemic barriers.