- Project Dates: From May 2013 to April 2015
- Project Leader: Richard Thomson & Catherine Exley
- Staff: Kerry Joyce
- Sponsors: NIHR Health Services and Delivery Research Programme
- Partners: Julian Hughes, Northumbria Healthcare NHS Foundation Trust;
Implantable cardioverter defibrillators (ICDs) prevent sudden cardiac death in patients at high risk (primary prevention) and in survivors of cardiac arrest (secondary prevention). ICDs are effective at improving overall survival but have a range of adverse effects including inappropriate shocks, increased hospitalisations and psychological sequelae. ICDs can also prolong the dying process, and cause unnecessary pain and distress to the patient towards the end of their life. The idea of device deactivation raises complex ethical, moral and emotional dilemmas for the patient, their family members and the clinician. Yet it is unclear if, how and when the issue of deactivation is communicated to ICD recipients. We also do not know what types of information or support patients and their family members need in order to make implantation and deactivation decisions. To date, much of the evidence base is concerned with what happens in specialist centres with little consideration of earlier stages of decision making in secondary care. We are using non-participant observation and semi-structured interviews to understand current decision making practices, and to establish the information and support needs of patients, family members and clinicians involved in making decisions about both implantation and deactivation of ICDs. These data will be used to develop initial, brief decision support for ICD implantation, as well as informing advance care planning for ICD recipients.