Experiences of US Nephrologists in the Delivery of Conservative Care to Patients With Advanced Kidney Disease: A National Qualitative Study

Susan P.Y. Wong, Saritha Boyapati, Ruth A. Engelberg, Bjorg Thorsteinsdottir, Janelle S. Taylor, Ann M. O'Hare

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Abstract

Rationale & Objective: It is relatively unusual for US patients with advanced chronic kidney disease (CKD) to forgo initiation of maintenance dialysis. Our objective was to describe practice approaches of US nephrologists who have provided conservative care for members of this population. Study Design: Qualitative study using semi-structured interviews. Setting & Participants: A national sample of 21 nephrologists experienced in caring for patients with advanced CKD who decided not to start dialysis. Analytical Approach: Grounded theory methods to identify dominant themes reflecting nephrologists’ experiences with and approaches to conservative care for patients with advanced CKD. Results: Nephrologists who participated in this study were primarily from academic practices (n = 14) and urban areas (n = 15). Two prominent themes emerged from qualitative analysis reflecting nephrologists’ experiences with and approaches to conservative care: (1) person-centered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients, framing dialysis as an explicit choice, being mindful of sources of bias in medical decision making, and being flexible to the changing needs, values, and preferences of patients; and (2) improvising a care infrastructure, which described the challenges of managing patients conservatively within health systems that are not optimally configured to support their needs. Participating nephrologists described cobbling together resources, assuming a range of different health care roles, preparing patients to navigate health systems in which initiation of dialysis served as a powerful default, and championing the principles of conservative care among their colleagues. Limitations: The themes identified likely are not generalizable to most US nephrologists. Conclusions: Insights from a select group of US nephrologists who are early adopters of conservative care signal the need for a stronger cultural and health system commitment to building care models capable of supporting patients who choose to forgo dialysis.

Original languageEnglish (US)
JournalAmerican Journal of Kidney Diseases
DOIs
StateAccepted/In press - Jan 1 2019

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Keywords

  • advance care planning (ACP)
  • advanced CKD
  • chronic kidney disease (CKD)
  • Conservative care
  • dialysis initiation
  • elderly
  • end-of-life care
  • geriatrics
  • goals of care
  • hospice
  • kidney failure
  • medical decision-making
  • nephrologist attitudes
  • nondialytic care
  • palliative care
  • patient autonomy
  • patient choice
  • qualitative research
  • quality of life (QoL)
  • renal supportive care

ASJC Scopus subject areas

  • Nephrology

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