Background: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. Aim: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. Design: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. Data sources: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). Results: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient–professional partnerships (three articles). Conclusion: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

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.

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.

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.

Objective: To obtain insight in self-management challenges of persons with advanced cancer and factors that influence their self-management.Methods: Exploratory study among persons with advanced cancer. We conducted in-depth interviews and performed an inductive thematic analysis, using open, axial and selective coding.Results: We interviewed 33 persons with advanced cancer. Four self-management challenges were identified: (1) Dealing with physical and psychological symptoms and problems. (2) Navigating the illness trajectory, including management of clinical appointments and treatment regimens, end-of-life planning life and 'maintaining normality'. (3) Managing relations with healthcare professionals, including contributing experiential knowledge to medical decision-making. (4) Navigating changes in the social environment. Some participants responded proactively to these challenges, for example, by actively searching for information to obtain an extensive understanding of their illness and (re)scheduling medical appointments for a better fit in their agenda. Self-management strategies seemed to be influenced by patients' personality, life history, moment in the illness trajectory and the social environment. Conclusion:Self-management challenges of persons with advanced cancer are based largely outside the professional care setting. Self-management strategies in response to these challenges are typically aimed at maintaining a normal life. Self-management support should be tailored to patients' needs and part of trustful partnerships with patients and relatives.