@article{38458a644ca447ee98873e2111fc735c,
title = "Experiences of US Nephrologists in the Delivery of Conservative Care to Patients With Advanced Kidney Disease: A National Qualitative Study",
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{\textquoteright} 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{\textquoteright} 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.",
keywords = "Conservative care, advance care planning (ACP), advanced CKD, chronic kidney disease (CKD), 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",
author = "Wong, {Susan P.Y.} and Saritha Boyapati and Engelberg, {Ruth A.} and Bjorg Thorsteinsdottir and Taylor, {Janelle S.} and O'Hare, {Ann M.}",
note = "Funding Information: This work was supported by a grant from the National Institutes of Health ( 1K23DK107799-01A1 , PI Wong), which had no role in the study design; collection, analysis, and interpretation of data; writing the report; or the decision to submit the report for publication. Funding Information: Susan P.Y. Wong, MD, MS, Saritha Boyapati, MD, Ruth A. Engelberg, PhD, Bjorg Thorsteindottir, MD, Janelle S. Taylor, PhD, and Ann M. O'Hare, MD, MA. Research idea and study design: SPYW, RAE, AMO; data acquisition: SPYW; data analysis/interpretation: SPYW, SB, RAE, JST, BT, AMO; mentorship: SPYW. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy of integrity of any portion of the work are appropriately investigated and resolved. This work was supported by a grant from the National Institutes of Health (1K23DK107799-01A1, PI Wong), which had no role in the study design; collection, analysis, and interpretation of data; writing the report; or the decision to submit the report for publication. In the past 3 years, Dr Wong has received teaching honoraria from VitalTalk and receives funding from the National Palliative Care Research Center and the VA National Center for Ethics in Health Care. Dr Thorsteinsdottir is supported by a grant from the National Institute on Aging (K23AG051679). Dr O'Hare reports personal fees from University of Pennsylvania, University of Alabama, Hammersmith Hospital, the Society of Dialysis Therapy, Chugai Pharmaceutical Co Ltd, Kaiser Permanente of Southern California, UpToDate, Fresenius Medical Care, and Dialysis Clinic, Inc and grant support from VA Health Services Research and Development, the National Institute of Diabetes and Digestive and Kidney Disorders, and Centers for Disease Control and Prevention outside the submitted work. The remaining authors declare that they have no relevant financial interests. Received March 13, 2019. Evaluated by 3 external peer reviewers, with direct editorial input from an Associate Editor and the Editor-in-Chief. Accepted in revised form July 5, 2019. Funding Information: In the past 3 years, Dr Wong has received teaching honoraria from VitalTalk and receives funding from the National Palliative Care Research Center and the VA National Center for Ethics in Health Care. Dr Thorsteinsdottir is supported by a grant from the National Institute on Aging ( K23AG051679 ). Dr O{\textquoteright}Hare reports personal fees from University of Pennsylvania, University of Alabama, Hammersmith Hospital, the Society of Dialysis Therapy, Chugai Pharmaceutical Co Ltd, Kaiser Permanente of Southern California, UpToDate, Fresenius Medical Care, and Dialysis Clinic, Inc and grant support from VA Health Services Research and Development, the National Institute of Diabetes and Digestive and Kidney Disorders , and Centers for Disease Control and Prevention outside the submitted work. The remaining authors declare that they have no relevant financial interests. Publisher Copyright: {\textcopyright} 2019 The Authors",
year = "2020",
month = feb,
doi = "10.1053/j.ajkd.2019.07.006",
language = "English (US)",
volume = "75",
pages = "167--176",
journal = "American Journal of Kidney Diseases",
issn = "0272-6386",
publisher = "W.B. Saunders Ltd",
number = "2",
}