Objective Advanced kidney disease is associated with a high risk of morbidity and mortality. Consequently, invasive treatments such as dialysis may not yield survival benefits. Advance care planning has been encouraged. However, whether such discussions are acceptable when done earlier, before end-stage kidney treatment decision-making occurs, is unclear. This pilot study aimed to explore whether use of the Serious Illness Conversation Guide to aid early advance care planning is acceptable, and to evaluate the information gained from these conversations.
Methods Patients with advanced kidney disease (stage 3B and above) and high mortality risk at 2 years were enrolled in this mixed-methods study from an academic nephrology clinic. Semi-structured interviews were conducted using the adapted Serious Illness Conversation Guide. Thematic analysis was used to assess patients’ perceptions of the conversation. Participants completed a questionnaire assessing conversation acceptability.
Results Twenty-six patients participated, 50% were female. Participants felt that the conversation guide helped them reflect on their prognosis, goals of care and treatment preferences. Most did not feel that the conversation provoked anxiety (23/26, 88%) nor that it decreased hopefulness (24/26, 92%). Some challenges were elicited; patients expressed cognitive dissonance with the kidney disease severity due to lack of symptoms; had difficulty conceptualising their goals of care; and vocalised fear of personal failure without attempting dialysis.
Conclusions Patients in this pilot study found the adapted Serious Illness Conversation Guide acceptable. This guide may be used with patients early in the course of advanced kidney disease to gather information for future advanced care planning.
- chronic conditions
- renal failure
- clinical decisions
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RAC and MAS are joint senior authors.
Contributors Research idea and study design: RAC, NT. Data acquisition: NT, PN. Data analysis/interpretation: NT, PN, RAC, MAS. Statistical analysis: NT: Supervision or mentorship: RAC, MAS. RAC and MAS are holding equal co-senior authorship. Each author contributed important intellectual content during manuscript drafting or revision, accepts personal accountability for the author’s own contributions, and agrees to ensure that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The Beth Israel Deaconess Medical Center Institutional Review Board approved this study.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available on reasonable request.