My guardian angel: patients’ fears and desires related to discussing implantable cardioverter-defibrillator deactivation

Steiner, Jill M.; Bernacki, Gwen M.; Kirkpatrick, James N.

doi:10.1136/heartjnl-2019-315935

Heart

2019

DOI: 10.1136/heartjnl-2019-315935

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My guardian angel: patients’ fears and desires related to discussing implantable cardioverter-defibrillator deactivation

Jill M. Steiner

Gwen M. Bernacki

James N. Kirkpatrick

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“…In the accompanying editorial, Steiner2, Bernacki and Kirkpatrick suggest a tiered approach to discussing the patient’s experience with their ICD, their understanding of the options for advance care planning and the possibility of ICD deactivation (figure 1). They conclude: ‘The heterogeneity of patients’ views on ICD therapy at the end of life presented in this manuscript supports the need for more open communication and ongoing education on this topic for both patients and providers.…”

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Heartbeat: When should patients consider implantable cardiac defibrillator deactivation?

Otto

2020

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Heartbeat: When should patients consider implantable cardiac defibrillator deactivation?

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2020

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‘You can’t start a car when there’s no petrol left’: a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation

et al. 2021

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ObjectiveTo explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians.DesignA multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach.SettingOne tertiary and two district general hospitals in England.ParticipantsWe completed 38 observations of hospital consultations prior to ICD implantation, and 80 interviews with patients, family members and clinicians between 2013 and 2015. Patients were recruited from preimplantation to postdeactivation. Clinicians included cardiologists, cardiac physiologists, heart failure nurses and palliative care professionals.ResultsFour key themes were identified from the data: the current status of deactivation discussions; patients’ perceptions of deactivation; who should take responsibility for deactivation discussions and decisions; and timing of deactivation discussions. We found that although patients and doctors recognised the importance of advance care planning, including ICD deactivation at an early stage in the patient journey, this was often not reflected in practice. The most appropriate clinician to take the lead was thought to be dependent on the context, but could include any appropriately trained member of the healthcare team. It was suggested that deactivation should be raised preimplantation and regularly reviewed. Identification of trigger points postimplantation for deactivation discussions may help ensure that these are timely and inappropriate shocks are avoided.ConclusionsThere is a need for early, ongoing and evolving discussion between ICD recipients and clinicians regarding the eventual need for ICD deactivation. The most appropriate clinician to instigate deactivation discussions is likely to vary between patients and models of care. Reminders at key trigger points, and routine discussion of deactivation at implantation and during advance care planning could prevent distressing experiences for both the patient and their family at the end of life.

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My guardian angel: patients’ fears and desires related to discussing implantable cardioverter-defibrillator deactivation

Cited by 2 publications

References 9 publications

Heartbeat: When should patients consider implantable cardiac defibrillator deactivation?

Heartbeat: When should patients consider implantable cardiac defibrillator deactivation?

‘You can’t start a car when there’s no petrol left’: a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation

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