Marcus Sellars1, Allison Tong2, Tim Luckett3, Rachael L Morton4, Carol A Pollock5, Lucy Spencer4, William Silvester1, Josephine M Clayton6. 1. Sydney Medical School, The University of Sydney, Sydney, Australia. 2. Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Australia. 3. Improving Palliative Care through Clinical Trials (ImPaCCT) New South Wales, Australia; Faculty of Health, University of Technology Sydney (UTS), Australia. 4. NHMRC Clinical Trials Centre, The University of Sydney, Australia. 5. Sydney Medical School, The University of Sydney, Sydney, Australia; Department of Renal Medicine, Royal North Shore Hospital, Australia. 6. Sydney Medical School, The University of Sydney, Sydney, Australia; Improving Palliative Care through Clinical Trials (ImPaCCT) New South Wales, Australia; HammondCare Palliative & Supportive Care Service, Greenwich Hospital, Sydney, Australia. Electronic address: josephine.clayton@sydney.edu.au.
Abstract
BACKGROUND: Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, ACP is not widely implemented in chronic kidney disease (CKD) care settings. This study aims to describe clinicians' beliefs, challenges, and perspectives of ACP in patients with CKD. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Nephrologists (n=20), nurses (n=7), and social workers (n=4) with a range of experience in facilitating ACP for patients with CKD across Australia. METHODOLOGY: Semistructured interviews were digitally recorded and transcribed verbatim. ANALYTICAL APPROACH: Transcripts were analyzed using thematic analysis. RESULTS: 5 major themes were identified: facilitating informed decision making (avoiding preconceptions, conveying complete truths, focusing on supportive care, and synchronizing with evolving priorities), negotiating moral boundaries (contending with medical futility and respecting patient vs family autonomy), navigating vulnerable conversations (jeopardizing the therapeutic relationship, compromising professional confidence, emotionally invested, and enriching experiences), professional disempowerment (unsupportive culture, doubting logistical feasibility, and making uncertain judgments), and clarifying responsibilities (governing facilitation, managing tensions, and transforming multidisciplinary relationships). LIMITATIONS: Some findings may be specific to the Australian context. CONCLUSIONS: The tensions among themes reflect that ACP is paradoxically rewarding for clinicians because ACP empowers patients yet can expose personal and professional vulnerabilities. Clinicians believe that a more collaborative approach is needed, with increased efforts to identify the evolving and individualized needs and goals of patients with CKD. Models of ACP that address clinicians' personal and professional vulnerabilities when initiating ACP may foster greater confidence and cultural acceptance of ACP in the CKD setting.
BACKGROUND: Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, ACP is not widely implemented in chronic kidney disease (CKD) care settings. This study aims to describe clinicians' beliefs, challenges, and perspectives of ACP in patients with CKD. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Nephrologists (n=20), nurses (n=7), and social workers (n=4) with a range of experience in facilitating ACP for patients with CKD across Australia. METHODOLOGY: Semistructured interviews were digitally recorded and transcribed verbatim. ANALYTICAL APPROACH: Transcripts were analyzed using thematic analysis. RESULTS: 5 major themes were identified: facilitating informed decision making (avoiding preconceptions, conveying complete truths, focusing on supportive care, and synchronizing with evolving priorities), negotiating moral boundaries (contending with medical futility and respecting patient vs family autonomy), navigating vulnerable conversations (jeopardizing the therapeutic relationship, compromising professional confidence, emotionally invested, and enriching experiences), professional disempowerment (unsupportive culture, doubting logistical feasibility, and making uncertain judgments), and clarifying responsibilities (governing facilitation, managing tensions, and transforming multidisciplinary relationships). LIMITATIONS: Some findings may be specific to the Australian context. CONCLUSIONS: The tensions among themes reflect that ACP is paradoxically rewarding for clinicians because ACP empowers patients yet can expose personal and professional vulnerabilities. Clinicians believe that a more collaborative approach is needed, with increased efforts to identify the evolving and individualized needs and goals of patients with CKD. Models of ACP that address clinicians' personal and professional vulnerabilities when initiating ACP may foster greater confidence and cultural acceptance of ACP in the CKD setting.
Authors: Daniel Y Lam; Jennifer S Scherer; Mark Brown; Vanessa Grubbs; Jane O Schell Journal: Clin J Am Soc Nephrol Date: 2019-02-06 Impact factor: 8.237
Authors: Devika Nair; Maie El-Sourady; Kemberlee Bonnet; David G Schlundt; Joseph B Fanning; Mohana B Karlekar Journal: J Palliat Med Date: 2020-02-11 Impact factor: 2.947