Family involvement in decisions concerning implantable cardioverter defibrillators: results from an international survey

Loreena Hill, Sonja McIlfatrick, Brian Taylor, Tiny Jaarsma, Anna Stromberg, Donna Fitzsimons

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Background: European and International expert guidelines recommend patients' with an Implantable Cardioverter Defibrillator (ICD) and their families are informed about deactivation. Recent empirical studies demonstrate diverse professional opinion regarding the involvement of family in the discussion about deactivation to dying patients.Purpose: To determine the impact of family involvement on healthcare professionals' decision to discuss ICD deactivation.Methods: Data from a systematic review, retrospective case note review and ten case studies identified social support as an important factor or Independent Variable (IV). The IV was classified into three levels, before being randomly assigned within vignettes of a factorial survey. The anonymised survey consisted of six vignettes, a demographic questionnaire and an opportunity for participants to record their most “recent case”. The survey was distributed electronically through a secure IT platform to healthcare professionals across Europe and America. Analysis included descriptive statistics, in addition to Multiple Regression and ANOVA to identify correlations between social support as an IV and two dependent variables. Thematic analysis was conducted on the qualitative data obtained from “recent cases”.Results: A total of 1614 vignettes were completed by 269 professionals (168 nurses, 64 clinicians, 37 allied health professionals), mean age 46 years (range 26–65 years) with majority from Europe (n=217, 81%). Social support did not impact the likelihood of professionals' to discuss ICD deactivation (p=0.740). However, professionals who managed patients living with a family member who shared healthcare decisions with them, were significantly more confident (p=0.014) in discussing deactivation, compared to professionals caring for patients with no family support. Almost half of participants (N=35; 44%) who provided a recent case documented family involvement. This ranged from a supportive shared role “wife was terrified of seeing her husband shocked on his deathbed, contributing to a decision” (Healthcare Professional 1) to that of a surrogate decision-maker “family made the decision to deactivate the ICD as death was clos” (Healthcare Professional 2).Conclusions: Family members can play an important role in the decision whether to deactivate an ICD, however this is contingent on their knowledge and previous involvement. Professionals should ensure families are involved in discussions and encourage shared decision-making. Further research is needed into the interventions required to support family members, ultimately improving end-of- life care for patients with an ICD.Acknowledgement/Funding: Work Supported by Public Health Agency, HSC Research and Development division. Awarded HFA Nurse Fellowship grant 2014
Original languageEnglish
JournalEuropean Heart Journal
Issue numbersuppl1
Publication statusPublished (in print/issue) - 29 Aug 2017


  • implantable defibrillators

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