• Christina Fluur, Kärstin Bolse, Anna Strömberg, and Ingela Thylén.
• Department of Cardiology UHL, County Council of Östergötland, Linköping, Sweden.
• J Adv Nurs. 2014 Aug 1;70(8):1758-69.

AimTo 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.BackgroundA 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.DesignQualitative study with in-depth interviews analysed with a content analysis.MethodsInterviews were performed with 18 spouses of medically stable implantable cardioverter defibrillator recipients during 2011-2012.ResultsThe 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.ConclusionDespite 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.© 2013 John Wiley & Sons Ltd.

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