Implantable cardioverter defibrillator (ICD) deactivation discussions: Reality versus recommendations

Hill, Loreena; McIlfatrick, Sonja; Taylor, Brian J.; Dixon, Lana; Cole, Ben; Moser, Debra K.; Fitzsimons, Donna

doi:10.1177/1474515115584248

Cited by 41 publications

(36 citation statements)

References 53 publications

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“…Some patients were hesitant to discuss deactivation before implantation, although this would make it easier to start conversations when deactivation becomes more directly relevant 19. Previous research showed that conversations about ICD deactivation often only occurred when indicated during follow-up or at the end-of-life 11 20. Postponing the discussion until the end-of-life is not recommended, since patients might have too little time to reflect on their decision, and the last phase of life is hard to identify in patients with heart failure,21 as shown in a previous study, in which only 15.7% of included healthcare professionals were confident in predicting death, which might impair the timing of ACP conversations 22…”

Section: Discussionmentioning

confidence: 99%

“…ACP enables individuals to define and discuss goals and preferences for future medical treatment and care, and to record and review these if appropriate 9. Previous studies have shown that only a minority of patients (27% in a study from 2004,10 up to 35% in a study from 20182) had discussed ICD deactivation with their healthcare professional and had their ICD deactivated prior to death 2 11. It is unknown why ICD deactivation is infrequently discussed, and what patients would want with their device when approaching the end-of-life.…”

Section: Introductionmentioning

confidence: 99%

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Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study

Stoevelaar

Brinkman-Stoppelenburg

Driel

et al. 2019

Heart

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ObjectiveImplantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.MethodsIn this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.ResultsMost patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.ConclusionsAlthough patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study

Stoevelaar

Brinkman-Stoppelenburg

Driel

et al. 2019

Heart

View full text Add to dashboard Cite

show abstract

“…Clinical guidelines and expert position papers (6-9) recommend healthcare professionals discuss deactivation of the device, however empirical studies report many are reluctant to engage in these conversations (1,10,11). Possible explanations include the maintenance of patients' hope (11), decline in patient's cognitive ability (12) or simply a lack of time (11).…”

Section: Introductionmentioning

confidence: 99%

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

Hill

McIlfatrick

Taylor

et al. 2019

BMJ Support Palliat Care

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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.

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“…In the trajectory of heart failure, goals for treatment may change, treatment needs to be adapted regularly and decisions need to be taken, requiring a good communication between patients, family members and health care professionals. Unfortunately, an open and clear communication about the heart failure trajectory is often lacking and not always performed as recommended . Although patients with chronic disease often wish to discuss changed treatment goals, patients with heart failure, compared to patients with cancer, receive less information about the imminence of death and available support, and family members less often receive bereavement support …”

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confidence: 99%

Talking about palliative care in heart failure

Jaarsma

Wal

Hjelmfors

et al. 2018

European J of Heart Fail

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Implantable cardioverter defibrillator (ICD) deactivation discussions: Reality versus recommendations

Abstract: Patients were not adequately informed regarding device deactivation prior to implantation, nor when their health deteriorated. The experience of a shock potentially affects professional decision making regarding device deactivation.

Cited by 41 publications

References 53 publications

Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study

Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study

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

Talking about palliative care in heart failure

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