As the number of implantable cardioverter defibrillators (ICDs) implanted continues to rise, there is a growing challenge to ensure patients and family members are adequately equipped for involvement in future end-of-life decisions concerning their device.
Objective To explore patients’, family members’ and professionals’ attitudes and understanding towards discussing ICD deactivation.
Methods Case study approach using qualitative interviews and framework analysis. A total of 29 qualitative interviews were undertaken, involving patients with a device, family members and healthcare professionals. Interviews were audio-recorded, transcribed verbatim and analysed using framework analysis. Data were triangulated with information obtained from the patients’ medical records (n=10).
Results Three main themes: (1) Professionals were reluctant to engage in conversations concerning deactivation, particularly prior to implantation, believing this was in the patient’s best interest. (2) Patients and family members had limited understanding of the implanted device and its functions. It was frequently perceived as ‘life-saving’ with any negativity of the shock experience seen as acceptable. (3) All patients wanted the opportunity to discuss deactivation when death was imminent, but were indecisive whether family members should be involved. Similarly, some patients felt the decision to deactivate rested solely with the medical profession while others felt it should be a joint decision between patient, family and clinical team.
Conclusions Patients and family members require improved communication and information concerning their future treatment plan and functionality of an ICD. A proactive approach to discuss deactivation would enable shared clinical decision-making in the advanced stages of illness.
- chronic conditions
- clinical decisions
- quality of life
- supportive care
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Funding The first author was supported by the Health and Social Care R&D Division of the Public Health Agency for Northern Ireland through a doctoral training fellowship. The first author had attended one week course on Qualitative research methods, through a Doctoral Fellowship award by the Department of Health, Social Services and Public Safety, R&D division, Northern Ireland.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval This study conformed to the principles outlined in the Declaration of Helsinki and was approved by Office for Research Ethics Committee Northern Ireland (ORECNI) (REC Reference: 13/NI/0008). Governance approval was granted by the Belfast Health and Social Care Trust: Trust R&D Ref 12092DF-AS.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available on reasonable request.
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