Spouses’ reflections on Implantable Cardioverter Defibrillator treatment with focus on the future and the end-of-life: a qualitative content analysis

Authors

  • Christina Fluur MD,

    Physician
    1. Department of Cardiology UHL, County Council of Östergötland, Linköping, Sweden
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  • Kärstin Bolse PhD RN,

    Senior Lecturer
    1. School of Social and Health Sciences, Halmstad University, Sweden
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  • Anna Strömberg PhD RN,

    Professor
    1. Department of Cardiology UHL, County Council of Östergötland, Linköping, Sweden
    2. Division of Nursing Sciences, Department of Medicine and Health Sciences, Faculty of Health Sciences, Linköping University, Sweden
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  • Ingela Thylén PhD RN

    Senior Lecturer, Corresponding author
    1. Department of Cardiology UHL, County Council of Östergötland, Linköping, Sweden
    2. Division of Nursing Sciences, Department of Medicine and Health Sciences, Faculty of Health Sciences, Linköping University, Sweden
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Abstract

Aim

To explore future reflections of spouses living with an implantable cardioverter defibrillator recipient with focus on the end-of-life phase in an anticipated palliative phase.

Background

A history of or risk for life-threatening arrhythmias may require an implantable cardioverter defibrillator. Despite the life-saving capacity of the device, eventually life will come to an end. As discussion about preferences of shock therapy at end-of-life phase seldom takes place in advance, the implantable cardioverter defibrillator recipients may face defibrillating shocks in the final weeks of their lives, adding to stress and anxiety in patients and their families.

Design

Qualitative study with in-depth interviews analysed with a content analysis.

Methods

Interviews were performed with 18 spouses of medically stable implantable cardioverter defibrillator recipients during 2011–2012.

Results

The spouses described how they dealt with changes in life and an uncertain future following the implantable cardioverter defibrillator implantation. Six subcategories conceptualized the spouses’ concerns: Aspiring for involvement; Managing an altered relationship; Being attentive to warning signs; Worries for deterioration in the partner's health; Waiting for the defibrillating shock; and Death is veiled in silence.

Conclusion

Despite the partner's serious state of health; terminal illness or death and the role of the device was seldom discussed with healthcare professionals or the implantable cardioverter defibrillator recipient. Open and honest communication was requested as important to support coping with an unpredictable life situation and to reduce worries and uncertainty about the future and end-of-life.

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