Advance care planning and end-of-life care in patients with an implantable cardioverter defibrillator: The perspective of relatives.

BACKGROUND: Little is known about the last phase of life of patients with implantable cardioverter defibrillators and the practice of advance care planning in this population. AIM: To describe the last phase of life and advance care planning process of patients with an implantable cardioverter defibrillator, and to assess relatives' satisfaction with treatment and care. DESIGN: Mixed-methods study, including a survey and focus group study. SETTING/PARTICIPANTS: A survey among 170 relatives (response rate 59%) reporting about 154 deceased patients, and 5 subsequent focus groups with 23 relatives. RESULTS: Relatives reported that 38% of patients had a conversation with a healthcare professional about implantable cardioverter defibrillator deactivation. Patients' and relatives' lack of knowledge about device functioning and the perceived lack of time of healthcare professionals were frequently mentioned barriers to advance care planning. Twenty-four percent of patients experienced a shock in the last month of life, which were, according to relatives, distressing for 74% of patients and 73% of relatives. Forty-two to sixty-one percent of relatives reported to be satisfied with different aspects of end-of-life care, such as the way in which wishes of the patient were respected. Quality of death was scored higher for patients with a deactivated device than those with an active device (6.74 vs 5.67 on a 10-point scale, p = 0.012). CONCLUSIONS: Implantable cardioverter defibrillator deactivation was discussed with a minority of patients. Device shocks were reported to be distressing to patients and relatives. Relatives of patients with a deactivated device reported a higher quality of death compared to relatives of patients with an active device.

Usefulness of insertable cardiac monitors for risk stratification: current indications and clinical evidence.

INTRODUCTION: The 2018 ESC Syncope guidelines expanded the indications for an insertable cardiac monitor (ICM) to patients with unexplained syncope and primary cardiomyopathy or inheritable arrhythmogenic disorders. AREAS COVERED: This review article discusses the clinical evidence for using an ICM for risk stratification in different patient populations including Brugada syndrome, long QT syndrome, hypertrophic cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy, cardiac sarcoidosis, and congenital heart disease. EXPERT OPINION: Clinical data on the usefulness of ICMs in different patient populations is limited but most studies demonstrate early detection of clinically relevant arrhythmias, such as nonsustained ventricular tachycardia or atrial fibrillation. It is important to emphasize that the study populations usually comprise selected populations where conventional diagnostic methods fail to clarify the mechanism of symptoms. The effect of an ICM on prognosis by earlier detection of arrhythmias is difficult to demonstrate in populations with rare disease. Risk stratification in patients with cardiomyopathy or inheritable arrhythmogenic disorders remains a niche indication for ICMs. The most important indication for an ICM remains unexplained syncope in patients at low risk of SCD. Given the device costs and uncertain clinical value of device-detected arrhythmias, it is unclear whether it is also useful in non-syncopal patients.

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

OBJECTIVE: Implantable 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. METHODS: In 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. RESULTS: Most 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. CONCLUSIONS: Although 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.

Patient-Reported Quality of Life as a Predictor of Mortality and Ventricular Tachyarrhythmia's During 7 Years' Follow-Up in Patients With an Implantable Cardioverter Defibrillator (from the MIDAS Study).

Preliminary evidence suggests that poor patient-reported quality of life (QoL) predicts mortality on the short term in patients with an implantable cardioverter defibrillator (ICD). It is unclear if this association persists on the long term. We evaluated whether patient-reported QoL at the time of implantation predicts mortality and ventricular tachyarrhythmias (VTa's) during 7 years' follow-up in patients with an ICD. A consecutive cohort of patients (80% men; mean [SD] age = 58 [12]) implanted with an ICD completed the Short Form Health Survey (SF-36). The 8 SF-36 subscales and the 2 component summary scores were used as predictors of VTa's and mortality at 7 years' follow-up. At 7 years' follow-up, 34% (132/392) of patients had died. Baseline physical functioning (hazard ratio [HR]: 1.59; 95% confidence interval [CI]: 1.11 to 2.29), role physical functioning (HR: 1.59; 95% CI: 1.09 to 2.31), vitality (HR: 1.53; 95% CI: 1.05 to 2.22), and general health (HR: 1.57; 95% CI: 1.09 to 2.27) were associated with 7-year mortality in adjusted analyses. There was a trend for low mental health being associated with an increased risk of mortality (HR: 1.38; 95% CI: 0.98 to 1.96). The other SF-36 dimensions were not significantly associated with mortality. Only baseline social functioning was associated with risk of VTa's during follow-up. In conclusion, patients with lower levels of physical functioning, role physical functioning, vitality, or general health had a greater risk of mortality, whereas only poor social functioning was associated with VTa's during 7 years' follow-up. Patient-reported QoL at the time of implant could be used to identify patients at risk for long-term mortality.

Trends in time in the management of the implantable cardioverter defibrillator in the last phase of life: a retrospective study of medical records.

BACKGROUND: The implantable cardioverter defibrillator (ICD) might give unwanted shocks in the last month of life. Guidelines recommend deactivation of the ICD prior to death. AIMS: The aims of this study were to examine trends in time (2007-2016) in how and when decisions are made about ICD deactivation, and to examine patient- and disease-related factors which may have influenced these decisions. In addition, care and ICD shock frequency in the last month of life of ICD patients are described. METHODS: Medical records of a sample of deceased patients who had their ICD implanted in 1999-2015 in a Dutch university (n = 308) or general (n = 72) hospital were examined. RESULTS: Median age at death was 71 years, and 88% were male. ICD deactivation discussions increased from 6% for patients who had died between 2007 and 2009 to 35% for patients who had died between 2013 and 2016. ICD deactivation rates increased in these periods from 16% to 42%. Presence of do-not-resuscitate (DNR) orders increased from 9% to 46%. Palliative care consultations increased from 0% to 9%. When the ICD remained active, shocks were reported for 7% of patients in the last month of life. Predictors of ICD deactivation were the occurrence of ICD deactivation discussions after implantation (OR 69.30, CI 26.45-181.59), DNR order (OR 6.83, CI 4.19-11.12), do-not-intubate order (OR 6.41, CI 3.75-10.96), and palliative care consultations (OR 8.67, CI 2.76-27.21). CONCLUSION: ICD deactivation discussions and deactivation rates have increased since 2007. Nevertheless, ICDs remain active in the majority of patients at the end of life, some of whom experience shocks.

The incidence and impact of implantable cardioverter defibrillator shocks in the last phase of life: An integrated review.

BACKGROUND: Although the implantable cardioverter defibrillator is successful in terminating life threatening arrhythmias, it might give unwanted shocks in the last phase of life if not deactivated in a timely manner. AIMS: This integrated review aimed to provide an overview of studies reporting on implantable cardioverter defibrillator shock incidence and impact in the last phase of life. METHODS AND RESULTS: We systematically searched five electronic databases. Studies reporting on the incidence and/or impact of implantable cardioverter defibrillator shocks in the last month of life were included. Fifteen studies were included. Two American studies published in 1996 and 1998 reported on the incidence of shocks in patients who died non-suddenly: incidences were 24% and 33%, respectively, in the last 24 hours, and 7% and 14%, respectively, in the last hour of life. Six American studies and one Danish study published between 1991-1999 reported on patients dying suddenly: incidences were 41% and 68% in the last 24 hours and 22-66% in the last hour. Four American studies and two Swedish studies published between 2004-2015 did not distinguish the cause of death: incidences were 17-32% in the last month, 3-32% in the last 24 hours, and 8% and 31% in the last hour of life. Three American studies published between 2004-2011 reported that shocks in dying patients are painful and distressing for patients, and distressing for relatives and professional caregivers. CONCLUSION: If the implantable cardioverter defibrillator is not deactivated in a timely manner, a potentially significant proportion of implantable cardioverter defibrillator patients experience painful and distressing shocks in their last phase of life.

Ventricular tachycardia in ischemic cardiomyopathy; a combined endo-epicardial ablation as the first procedure versus a stepwise approach (EPILOGUE) - study protocol for a randomized controlled trial.

BACKGROUND: The role of epicardial substrate ablation of ventricular tachycardia (VT) as a first-line approach in patients with ischemic heart disease is not clearly defined. Epicardial ablation as a first-line option is standard for patients with nonischemic dilated cardiomyopathy and arrhythmogenic right ventricular cardiomyopathy. Several nonrandomized studies, including studies on patients with ischemic heart disease, have shown that epicardial VT ablation improves outcome but this approach was often used after a failed endocardial approach. The aim of this study is to determine whether a combined endo-epicardial scar homogenization as a first-line approach will improve the outcome of VT ablation. METHODS/DESIGN: The EPILOGUE study is a multicenter, two-armed, nonblinded, randomized controlled trial. Patients with ischemic heart disease who are referred for VT ablation will be randomly assigned to combined endo-epicardial scar homogenization or endocardial scar homogenization only (control group). The primary outcome is recurrence of sustained VT during a 2-year follow-up. Secondary outcomes include procedural success and safety. DISCUSSION: This study is the first randomized trial that evaluates the role of a combined endo-epicardial scar homogenization versus endocardial scar homogenization for the treatment of ischemic scar-related VT. TRIAL REGISTRATION: NL4816807814v02.