Implantable cardioverter defibrillator (ICD) functionality: patient and family information for advanced decision-making

Abstract

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.ObjectiveTo explore patients’, family members’ and professionals’ attitudes and understanding towards discussing ICD deactivation.MethodsCase 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).ResultsThree 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.ConclusionsPatients 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.

Implantable cardioverter defibrillator devices: when, how and who should discuss deactivation with patients: a systematic literature review

“…Further literature also supported this approach stating the choice to deactivate was best left to the patient because 'no time is really the right time'. 11…”

Figures of the Heart Failure Association: Loreena Hill (HFA Board Member and Nurse Representative 2016–2020, and HFA Secretary 2020–2022)

“…She completed her PhD in 2015 with a thesis entitled 'Management of Implantable Cardioverter Defibrillators in Advanced Heart Failure'. 2,3 Her research interests remain on symptom and device management for patients in the advanced stages of heart failure. 4,5 Patients can experience multiple dire symptoms with poor quality of life.…”

“…In 2012, Loreena's love for research led to the successful acquisition of a doctoral fellowship from the Public Health Authority (Research and Development office NI) in 2012. She completed her PhD in 2015 with a thesis entitled ‘Management of Implantable Cardioverter Defibrillators in Advanced Heart Failure’ 2,3 . Her research interests remain on symptom and device management for patients in the advanced stages of heart failure 4,5 .…”

What is what? From a palliative care approach to specialized palliative care in heart failure management

“…This is particularly apparent in those patients who receive an implantable cardioverter‐defibrillator. Often the subject of deactivation is introduced to the patient and family members ‘too little, too late’ 10 . Many health care professionals rationalise their actions from the belief that it is in their patients ‘best interests’, as patients will become anxious if the term palliative care is used or might feel deserted and left without hope 8 .…”

“…Often the subject of deactivation is introduced to the patient and family members 'too little, too late'. 10 Many health care professionals rationalise their actions from the belief that it is in their patients 'best interests', as patients will become anxious if the term palliative care is used or might feel deserted and left without hope. 8 Others are of the opinion that palliative care is equivalent to terminal or hospice care, when there is an agreement that curative treatment is futile.…”