Missed opportunities! End of life decision making and discussions in implantable cardioverter defibrillator recipients.

BACKGROUND: Recent guidelines highlight the need for clinician-patient discussions regarding end-of-life (EOL) choices prior to implantable cardioverter defibrillator (ICD) implantation. Health literacy could affect the quality and quantity of such discussions. OBJECTIVE: Our objective was to determine the association of health literacy with experiences, attitudes, and knowledge of the ICD at EOL. METHODS: In this cross-sectional study, we used validated instruments to measure health literacy and patient experiences, attitudes, and knowledge of the ICD at EOL. RESULTS: Of the 240 ICD recipients, 76% of participants reported never having discussed the implications of a future withdrawal of defibrillation therapy with their healthcare provider. Increased odds of choosing to maintain defibrillation therapy were associated with female gender and lower ICD knowledge. CONCLUSIONS: From patients' perspectives, EOL discussions with providers were minimal. Most patients hold misperceptions about ICD function that could interfere with optimal EOL care, particularly for those with inadequate health literacy.

Multi-morbidity burden, psychological distress, and quality of life in implantable cardioverter defibrillator recipients: Results from a nationwide study.

BACKGROUND: The prevalence of multi-morbidity in implantable cardioverter defibrillator (ICD) recipients is approximately 25%. Multi-morbidity is associated with poor health and psychological outcomes in this population and may affect ICD recipients' quality-of-life (QOL). The purpose of this study was to determine the prevalence of psychological distress (anxiety, depressive symptoms, and Type-D personality) in ICD recipients with varying levels of comorbidities, and to examine the association between multi-morbidity burden and QOL in this population. METHODS: All adults listed in the Swedish ICD and Pacemaker Registry in 2012 with an ICD implanted for at least one year were invited to participate in this study. Binary logistic regression was used to predict QOL using the EQ-5D mean index dichotomized based on median QOL scores. Multi-morbidity burden scores were based on quartile groupings. RESULTS: A total of 2658 ICD recipients participated in the study (with a mean age of 65, 20.6% female, mean implant duration of 4.7 years, with 35.4% implanted for primary prevention of sudden cardiac arrest). Greater multi-morbidity burden, female sex, not working outside the home, history of ICD shock, negative ICD experience, higher levels of ICD-related concerns, and the presence of anxiety, depression, or Type D personality were associated with worse QOL in ICD recipients. Predictors differed by multi-morbidity burden level. CONCLUSIONS: Multi-morbidity burden and psychological distress is an essential factor related to QOL. This issue should be discussed with potential ICD recipients prior to implant. Further exploration of increased recognition and treatment of psychological distress in ICD recipients is warranted.