Abstract We report the challenges of the Working to Improve Discussions About Defibrillator Management trial, our novel, multicenter trial aimed at improving communication between cardiology ...clinicians and their patients with advanced heart failure (HF) who have implantable cardioverter defibrillators (ICDs). The study objectives are (1) to increase ICD deactivation conversations, (2) to increase the number of ICDs deactivated, and (3) to improve psychological outcomes in bereaved caregivers. The unit of randomization is the hospital, the intervention is aimed at HF clinicians, and the patient and caregiver are the units of analysis. Three hospitals were randomized to usual care and three to intervention. The intervention consists of an interactive educational session, clinician reminders, and individualized feedback. We enroll patients with advanced HF and their caregivers, and then we regularly survey them to evaluate whether the intervention has improved communication between them and their HF providers. We encountered three implementation barriers. First, there were institutional review board concerns at two sites because of the palliative nature of the study. Second, we had difficulty in creating entry criteria that accurately identified an HF population at high risk of dying. Third, we had to adapt our entry criteria to the changing landscape of ventricular assist devices and cardiac transplant eligibility. Here we present our novel solutions to the difficulties we encountered. Our work has the ability to enhance conduct of future studies focusing on improving care for patients with advanced illness.
The prevalence of heart failure (HF) is increasing and morbidity and mortality remain high. There is a clear need for palliative care for the growing population of chronically ill patients with HF. ...Because HF-specific therapy modifies disease and palliates symptoms, recommended treatments for chronic and acute decompensated HF are reviewed. This article discusses symptom burden in advanced HF and specific considerations for patients with HF regarding advance care planning and symptom-directed therapy. Options for care at the end of life, including hospice, chronic inotropic support, and deactivation of an internal cardiac defibrillator, are also discussed.
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