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

https://doi.org/10.1053/j.ajkd.2016.12.015Get rights and content

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.

Section snippets

Study Design and Conduct

We used a comparative narrative design of nephrologists’ beliefs and practices in the United States and England as related to dialysis decision making.15, 16, 17 We developed an interview guide using practical knowledge of the clinical arena and existing literature, with the intention of capturing the factors influencing nephrologists’ beliefs and practices (Box 1). The University of California, San Francisco Institutional Review Board approved the study (#13-11184).

Participant Selection

One investigator from

Participant Characteristics

A total of 59 interviews were completed among 18 English nephrologists and 41 American nephrologists. The average duration of interviews was 34 (range, 13.5-60) minutes. All interviews with English nephrologists were in person. Ten interviews with American nephrologists were in person, 10 were by videoconference (eg, Skype or FaceTime), and 21 were by speakerphone.

Most participants were 45 years or younger, men, and white (Table 1). Average number of years since completing nephrology training

Discussion

In this study, we found that nephrologists in the United States and England identified several system-level factors that both facilitated and interfered with making decisions around foregoing or withdrawing dialysis therapy. System-level factors emanated from national and institutional policies and structural factors, from how providers practice medicine (the culture of medicine), and from beliefs and behaviors of the lay public. By virtue of its qualitative design, this study extends knowledge

Acknowledgements

We thank the participants of this study.

Support: Dr Grubbs was supported by grant 1K23DK093710-01A1 from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and by the Harold Amos Medical Faculty Development Program of the Robert Wood Johnson Foundation. Dr Tuot was supported by grant K23DK094850 from the NIDDK. Funders of this study had no role in study design; collection, analysis, and interpretation of data; writing the report; and the decision to submit the report

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