Management of implantable cardioverter defibrillators in advanced heart failure : an exploratory study of heart failure patients', carers' and healthcare professionals' perspectives

Background: The ICD is cornerstone in the treatment of life-threatening arrhythmias, although there is growing concern that dying patients are receiving multiple futile shocks. Expert guideline recommendations regarding ICD deactivation are not implemented in practise and ICD deactivation is rarely discussed. This limits patients' and carers' knowledge and choice at end-of-life. Aim: To explore perspectives of patients, carers and professionals regarding ICD deactivation and to examine the impact these have on clinical judgements about end-of-life management. Methods: Sequential exploratory mixed methods design incorporating two phases. • Phase One: Data from a systematic review of literature, case studies and retrospective case note review were synthesised and used to generate nine independent variables. • Phase Two: Variables were randomly manipulated and embedded within vignettes of a factorial survey disseminated to UK and Irish professionals. Results: Phase One data confirmed pre-implantation information on ICD's functionality and possible deactivation was inadequate. Patients' and professionals' held a positive perception of the ICD and were reluctant to discuss deactivation until death was imminent. Most patients wanted involvement in critical discussions, although agreed the decision concerning deactivation should be made by their cardiologist, without burdening family. Carers' were kept uninformed unless the patient became cognitively impaired. Phase Two: 534 vignettes were completed by 89 professionals (22 Cardiologists, 57 Nurses, 10 Clinical Physiologists). Nurses were more likely to favour a pre-implantation discussion than cardiologists, although all groups agreed the subject of deactivation should be broached when death was imminent. Clinical indicators of heart failure severity (NYHA IV) and diagnosis of bowel cancer increased the likelihood of this discussion. All groups felt deactivation was warranted when the patient experienced multiple shocks, however data from Phase One found no evidence of this occurring. Professionals in post for at least six years were most confident in clinical decision-making. Conclusions: These data highlight missed opportunities to involve patients in shared decision-making, with the majority of professionals reluctant to discuss deactivation. Lack of pre-implantation information compromised patients' knowledge and restricted informed decision-making to last days of life. Professionals' relied on their intuitive judgement rather than evidence-based guidance. Data extends the factorial survey methodology and provides direction to improve end-of-life care for patients with an ICD.