Who decides what and when: a holistic understanding of decision-making in implantable cardioverter defibrillator deactivation.

Loreena Hill, Sonja McIlfatrick, Brian Taylor, Donna Fitzsimons

Research output: Contribution to conferencePosterpeer-review


Background: Implantable Cardioverter Defibrillators (ICDs) are cornerstone in the treatment of sudden cardiac death. Empirical studies have found many patients with an ICD are unaware of the potential for device deactivation, limiting shared decision-making. Dying patients with an active ICD have an increased risk of experiencing painful futile shocks.

Purpose: Case study approach to explore patients', carers' and professionals' perspectives of ICD deactivation

Methods: A purposive sample of ten case studies was selected that fulfilled the eligibility criteria defined by the research team. A “case” referred to a patient, their carer and two clinical team members. Suitable patients were identified by their clinician with carers nominated by respective patients. Informed consent was obtained before data was collected sequentially through semi-structured interviews with patients and carers, focus groups with clinical team members and patients' medical records. Interviews and focus groups were digitally recorded and transcribed verbatim. Framework analysis was used.

Results: Data from in-depth interviews (n=20), focus groups (n=9) and medical records (n=10). Four key themes developed which included-

Limited communication pre-implantation: Patients were uninformed about deactivation before device implantation. Professionals in Focus Group 6 believed they acted “in the patients' best interests”, unaware their omission of information was contrary to recommended guidelines.
Restricted Knowledge: Patients' and carers lacked knowledge on the device and severity of illness. Patient 2 said “I don't think it had to be turned off, no one ever said to me”. In a number of the cases, this led to a breakdown in their therapeutic relationship.
ICD perceived as a life saver: Despite dire heart failure symptoms, patients maintained an idealistic attitude towards the future role of the ICD. Terms included “peace of mind” (patient 2), “protected” (patient 3) and “an insurance if I need it” (patient 5). Professionals were reluctant to dispel optimism, underestimating the impact patients' and carers' misunderstandings had on shared decision-making.
Patients' choices and decisions limited: Patients believed the decision to deactivate their ICD resided with their clinician. Patient 3 noted “no-one has the right to make that decision unless medically trained”. Professionals believed that unless the patient was incapable, the decision of deactivation was the patient's. Advanced planning was absent in all of ten case studies.
Conclusion: Patient and carer involvement in end-of-life decision-making is hampered by a lack of knowledge on the ICD and prognosis. Professionals' decision to embark on a discussion concerning deactivation was idiosyncratic and often based on experiential knowledge rather than guideline recommendations. Frequently these discussions occurred when death was imminent, leaving minimal time for the patient and carer to make preparations.
Original languageEnglish
Publication statusPublished - Aug 2017
EventEuropean Society of Cardiology Congress 2017 - Barcelona , Spain
Duration: 26 Aug 201730 Aug 2017


ConferenceEuropean Society of Cardiology Congress 2017


Dive into the research topics of 'Who decides what and when: a holistic understanding of decision-making in implantable cardioverter defibrillator deactivation.'. Together they form a unique fingerprint.

Cite this