No abstract

The questionnaires were easy to complete and changes in sexuality and information needs were identified. The NSCS-CHF needs further validation as a research instrument. Healthcare professionals can use both questionnaires to bring up the topic of sexuality and to identify topics that require further discussion or counselling with patients and partners.

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.

ObjectiveImplantable 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.MethodsIn 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.ResultsMost 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.ConclusionsAlthough 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.