Implantable cardioverter defibrillators (ICDs) reduce mortality in selected patients with chronic heart failure but prognostic benefit is likely to attenuate with progression to end-stage heart failure. The incidence of multiple futile ICD shocks before death is uncertain. Only individual patients, supported by their healthcare professionals, can decide when ICD therapy becomes futile in end-stage heart failure. Despite consensus that ICD deactivation should be routinely discussed, this rarely occurs in clinical practice for many reasons including uncertainty about when to initiate these discussions and reluctance to confront death and dying. Patient and carer opinions about end-stage heart failure and ICD deactivation may not meet professional expectations. Future research should focus on these opinions and examine interventions that bridge the gap between best practice and the reality of current clinical practice.
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Funding KH, FM, SB, UM and CRM have received funding from the Caring Together programme which is jointly funded by British Heart Foundation Scotland, Marie Curie Cancer Care and NHS Greater Glasgow and Clyde. SP is currently funded by an unrestricted educational grant from St Jude Medical.
Competing interests None.
Ethics approval Approval provided by the West of Scotland Research Ethics Service (10/S0701/20).
Provenance and peer review Not commissioned; externally peer reviewed.