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Objectives: Self-management of patients with advanced cancer is challenging. Although healthcare professionals may play a crucial role in supporting these patients, scant scientific attention has been paid to their perspectives. Therefore, we examined healthcare professionals' views on self-management and self-management support in this population.Methods: We conducted qualitative interviews with 27 purposively sampled medical specialists (n = 6), nurse specialists (n = 6), general practitioners (n = 8) and homecare/ hospice nurses (n = 7) in the Netherlands. Transcripts were analysed using thematic analysis.Results: Healthcare professionals experienced self-management of patients with advanced cancer to be diverse, dynamic and challenging. They adopted instructive, collaborative and advisory roles in self-management support for this population. Whereas some professionals preferred or inclined towards one role, others indicated to switch roles, depending on the situation.Conclusions: Just like patients with advanced cancer, healthcare professionals differ in their views and approaches regarding self-management and self-management support in this population. Therefore, instructive, collaborative and advisory self-management support roles will all be useful under certain circumstances.Practice Implications: Healthcare professionals can support self-management by being aware of their own views and communicating these clearly to their patients and colleagues. Education in self-management support should include self-reflection skills and discuss the relation between self-management and professional care. [ABSTRACT FROM AUTHOR]

Abstract: The landscape of central Amazonia is composed of plateaus and valleys. Previous observations have shown preferential pooling of CO2 in the valleys, suggesting that the change in CO2 storage in the canopy air space (S) will be spatially variable at the scale of the topography. This may affect the interpretation of the net ecosystem CO2 exchange (NEE) rates measured on the plateaus if they have used one single atmospheric CO2 concentration ([CO2]) vertical profile measurement system. We have measured the diel, spatial and seasonal variation of S along the topography by using a set of automated [CO2] vertical profile measurement systems. In addition, NEE, the above-canopy turbulent exchange of CO2 (F c ) and meteorological variables were also measured on a micrometeorological tower located on the plateau. The nocturnal accumulation of CO2 was larger on the slopes and in the valleys than on the plateau and was larger in the dry period than in the wet period. In addition, the release of this CO2 occurred later in the day on the slopes and in the valleys than on the plateau. Differences in the flow regime above the canopy along the topographical gradient, lateral drainage of respired CO2 downslope, and temporal, spatial, and seasonal variation of soil CO2 efflux (R soil) are thought to have contributed to this. These conditions cause S to be higher in magnitude on the slopes and in the valleys than on the plateau during midmorning hours. We demonstrate that there is a larger underestimation of R eco by nighttime eddy covariance (EC) measurements in the dry period than in the wet period. In addition, R eco – as derived from measurements only on the plateau (F c + S P) – does not agree with that derived by an independent method. Yet S fluxes peaked at about 18:00–20:00 on the slopes and in the valleys, following a continuous decrease after this period until reaching a minimum just after dawn. NEE derived from F c measured on the plateau and S measured on the plateau, slope and valley increased the estimates of R eco on the plateau by about 30% and 70% in the wet and dry periods, respectively. Particularly for flux-tower sites over complex terrain, we recommend measuring the spatial variability of CO2 at, at least two, more points along the topography to determine to what extent horizontal gradients and storage changes may contribute to tower fluxes. Finally, for sites that present topographical characteristics similar to that described in this study, care must be taken with the use of single in-canopy profiles of [CO2] to correct EC fluxes. [Copyright &y& Elsevier]

Objectives: To explore the common ground of what family caregivers need in their various roles (caregiver, care recipient and patient's partner, child or friend) from healthcare professionals across healthcare settings and disease trajectories., Design: Interviews were conducted with family caregivers of patients with life-threatening diseases who were treated at home, in hospitals, nursing homes or hospices between 2017 and 2022. Reflexive thematic analysis was performed., Setting/participants: 63 family caregivers of 65 patients were interviewed. Of the patients, 36 (55%) had COVID-19 and 29 (45%) had other life-threatening diseases (eg, advanced cancer, dementia). The majority of family caregivers were women (83%) and children of the patient (56%)., Results: Three themes were developed regarding family caregivers' core needs across their different roles: (1) 'feeling seen and valued', (2) 'experiencing trust in the provided care' and (3) 'experiencing guidance and security'. Actions of healthcare professionals that meet those needs relate to their contact and relationship with family caregivers, information provision, practical and emotional support, the care for the patient and facilitating the connection between family caregivers and patients., Discussion: Healthcare professionals should be trained in meeting family caregivers' core needs, in which their (collaborative) relationship with them plays an important role. Efforts to meet the core needs should be incorporated into healthcare organisations' workflows, and future research should investigate related barriers and facilitators., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: This study aimed to examine whether the 10-item Risk Score List (RSL) accurately predicts delirium in patients admitted to inpatient hospice care and whether this instrument can be simplified. Determining the risk for developing delirium can help to treat these patients in a timely manner., Methods: This was a retrospective medical record study in patients who died in 2019 or 2020 in three hospices. Predictive values were examined using Cox regression analysis, crosstabs, and C-statistic., Results: In total, 240 patients were included. Median age at admission was 78 (IQR 70-84) years. Primary diagnosis most often was cancer (n = 186, 78%); 173 (72%) patients had an increased risk of delirium according to RSL, of whom 120 (69%) developed delirium. Overall, 147 (61%) patients developed delirium. The RSL significantly predicted future delirium (HR 3.25, CI 1.87-5.65, p < 0.01) and had a sensitivity of 85%, a specificity of 43%, positive predictive value of 62%, negative predictive value of 73%, and a C-statistic of 0.64. Simplifying the RSL to four items still significantly predicted future delirium, with similar predictive values., Conclusion: Delirium occurs in more than half of patients admitted to hospice care. The RSL can be simplified to four items, without compromising on predictive accuracy., (© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

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., (© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

This study aimed at investigating nurse practitioners' self-efficacy and behavior in supporting self-management of patients with a progressive, life-threatening illness and their relatives. We adapted an existing validated instrument for this purpose, amongst other things by adding a seventh subscale "attention for relatives," and administered it in a nationwide, cross-sectional online survey among Dutch nurse practitioners. We analyzed associations between self-reported self-efficacy and behavior using Pearson correlations and paired sample t tests. Associations between self-efficacy and behavior with nurse practitioners' characteristics were examined using linear regression models. Most nurse practitioners (n = 327; 26% complete responses) were women (93%). Subscale and total scores for nurse practitioners' self-efficacy were moderately positively correlated with those for their behavior in self-management support. Subscale and total scores were statistically significantly higher for their self-efficacy than for their behavior. Increased work experience with patients with a progressive, life-threatening illness was associated with higher scores on self-efficacy and behavior in self-management support. We conclude that nurse practitioners are confident in their ability to support self-management; yet, they do not always use these competencies in practice., Competing Interests: The author have no conflicts of interest to disclose., (Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.)

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.

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.

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

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.