A Pilot Study of the Serious Illness Conversation Guide in a Dialysis Clinic
Ernest I. Mandel, Francine L. Maloney, Nathan J. Pertsch, Jonathon D Gass, Justin J. Sanders, Rachelle Bernacki, Susan D. Block
Abstract
Clinician-led conversations about future care priorities occur infrequently with end-stage renal disease (ESRD) patients on dialysis. This was a pilot study of structured serious illness conversations using the Serious Illness Conversation Guide (SICG) in a single dialysis clinic to assess acceptability of the approach and explore conversation themes and potential outcomes among patients with ESRD. Twelve individuals with ESRD on dialysis from a single outpatient dialysis clinic participated in this study. Participants completed a baseline demographics survey, engaged in a clinician-led structured serious illness conversation, and completed an acceptability questionnaire. Conversations were recorded, transcribed and thematically analyzed. The average age of participants was 68.8 years. The conversations averaged 20:53 in length. Ten participants (83%) felt that the conversation was held at the right time in their clinical course and eleven participants (91%) felt that it was worthwhile. Most participants (73%) reported neutral feelings about clinician use of a printed guide. Eleven participants (91%) reported no change in anxiety about their illness following the conversation, and five participants (42%) reported that the conversation increased their hopefulness about future quality of life. Thematic analysis revealed common perspectives on dialysis including that participants view in-center hemodialysis as temporary, compartmentalize their kidney disease, perceive narrowed life experiences and opportunities, and believe dialysis is their only option. This pilot study suggests that clinician-led structured serious illness conversations may be acceptable to patients with ESRD on dialysis. The themes identified can inform future serious illness conversations with dialysis patients.