BackgroundNursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and... Show moreBackgroundNursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff.ObjectiveThis review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver.DesignScoping review.MethodsA literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review.ResultsNine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills.ConclusionsThis review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people’s readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other. Show less
Smaling, H.J.A.; Xu, J.Y.; Nakanishi, M.; Shinan-Altman, S.; Mehr, D.R.; Radbruch, L.; ... ; Steen, J.T. van der 2023
Background Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss... Show moreBackground Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner.Methods Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technologyuse at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction.Discussion In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONTEND acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. Show less
Background: Timely initiation of advance care planning (ACP) in general practice is challenging, especially in patients with non-malignant conditions. Our aim was to investigate how perceived... Show moreBackground: Timely initiation of advance care planning (ACP) in general practice is challenging, especially in patients with non-malignant conditions. Our aim was to investigate how perceived optimal timing of ACP initiation and its triggers relate to recorded actual timing in patients with cancer, organ failure, or multimorbidity. Methods: In this mixed-methods study in the Netherlands, we analysed health records selected from a database with primary care routine data and with a recorded ACP conversation in the last two years before death of patients who died with cancer, organ failure, or multimorbidity. We compared actual timing of ACP initiation as recorded in health records of 51 patients with the perceived optimal timing as determined by 83 independent GPs who studied these records. Further, to identify and compare triggers for GPs to initiate ACP, we analysed the health record documentation around the moments of the recorded actual timing of ACP initiation and the perceived optimal timing of ACP initiation. We combined quantitative descriptive statistics with qualitative content analysis. Results: The recorded actual timing of ACP initiation was significantly closer to death than the perceived optimal timing in patients with cancer (median 88 vs. 111 days before death (p = 0.049)), organ failure (227 vs. 306 days before death (p = 0.02)) and multimorbidity (113 vs. 338 days before death (p = 0.006)). Triggers for recorded actual versus perceived optimal timing were similar across the three groups, the most frequent being 'expressions of patients' reflections or wishes' (14% and 14% respectively) and 'appropriate setting' (10% and 13% respectively). Conclusion: ACP in general practice was initiated and recorded later in the illness trajectory than considered optimal, especially in patients with organ failure or multimorbidity. As triggers were similar for recorded actual and perceived optimal timing, we recommend that GPs initiate ACP shortly after a trigger is noticed the first time, rather than wait for additional or more evident triggers when the illness is in an advanced stage. Show less
Glioma, a malignant brain tumor, is a serious condition with a large impact on patients’ life expectancy and Health-Related Quality of Life (HRQoL). This thesis aimed to improve knowledge on the... Show moreGlioma, a malignant brain tumor, is a serious condition with a large impact on patients’ life expectancy and Health-Related Quality of Life (HRQoL). This thesis aimed to improve knowledge on the prediagnostic symptoms, tmeasurement of HRQoL and care in the end-of-life phase of glioma patients.Regarding prediagnostic symptoms in glioma patients, it was found that several symptoms such as fatigue or headache were relatively common before diagnosis, but not more common than in patients with other conditions. Therefore, identification of patients with glioma in general practice based on their symptomatology seems extremely difficult.For the measurement of HRQoL in glioma it was demonstrated that patients, proxies and healthcare neuro-oncology professionals were overall positive about their routine implementation of its assessment in clinical practice. Regarding the timing of the measurements, the scores were not influenced by assessment either before or after the consultation with the physician.With respect to the optimization of care in the end-of-life phase, a feasibility study on the disease-specific Advanced Care Program was conducted among patients with glioblastoma, the most malignant type of glioma and their nearest. The relatively positive results of that study in terms of satisfaction warrant the need for a larger, controlled study. Show less
Harding, A.J.E.; Doherty, J.; Bavelaar, L.; Walshe, C.; Preston, N.; Kaasalainen, S.; ... ; MySupport Study Group 2022
Background: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best... Show moreBackground: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. Methods: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. Discussion: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia. Show less
Bavelaar, L.; Visser, M.; Schlicksupp, P.; Tilburgs, B.; Maaden, T. van der; Achterberg, W.P.; Steen, J.T. van der 2022
Objectives: To explore changes in advance care plans of nursing home residents with dementia following pneumonia, and factors associated with changes. Second, to explore factors associated with the... Show moreObjectives: To explore changes in advance care plans of nursing home residents with dementia following pneumonia, and factors associated with changes. Second, to explore factors associated with the person perceived by elderly care physicians as most influential in advance treatment decision making.Design: Secondary analysis of physician-reported PneuMonitor trial data.Setting and Participants: The PneuMonitor trial took place between January 2012 and May 2015 in 32 nursing homes across the Netherlands; it involved 429 residents with dementia who developed pneumonia.Methods: We compared advance care plans before and after the first pneumonia episode. Generalized logistic linear mixed models were used to explore associations of advance care plan changes with the person most influential in decision making, with demographics and indicators of disease progression. Exploratory analyses assessed associations with the person most influential in decision making.Results: For >90% of the residents, advance care plans had been established before the pneumonia. After pneumonia, treatment goals were revised in 15.9% of residents; 72% of all changes entailed refinements of goals. Significant associations with treatment goal changes were not found. Treatment plans changed in 20.0% of residents. Changes in treatment decisions were more likely for residents who were more severely ill (odds ratio 1.5, 95% CI 1.2-1.9) and those estimated to live <3 months (odds ratio 3.3, 95% CI 1.9-5.8). Physicians reported that a family member was often (47.4%) most influential in decision making. Who is most influential was associated with the resident's dementia severity.Conclusions and Implications: Overall, changes in advance care plans after pneumonia diagnosis were small, suggesting stability of most preferences or limited dynamics in the advance care planning process. Advance care planning involving family is common for nursing home residents with dementia, but advance care planning with persons with dementia themselves is rare and requires more attention. (C) 2022 The Authors. Published by Elsevier Inc. on behalf of AMDA e The Society for Post-Acute and Long-Term Care Medicine. Show less
Background: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. Aim: To identify the optimal moment for,... Show moreBackground: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. Aim: To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories. Design and methods: A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses. Setting and patients: We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands. Results: The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) (p < 0.001). The most frequently mentioned reason for cancer was "receiving a diagnosis" (21.5%), for organ failure it was "after a period of illness" (14.7%), and for multimorbidity it was "age" and "patients" expressed wishes or reflections' (both 12.0%). Conclusion: The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that "the" optimal timing for ACP should be seen as a "window of opportunity" for the different disease trajectories. Show less
Background: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the... Show moreBackground: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers.Methods: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research.Discussion: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care. Show less
Background It is unknown if the implementation of an advance care planning (ACP) program is feasible in daily clinical practice for glioblastoma patients. We aimed to develop an ACP program and... Show moreBackground It is unknown if the implementation of an advance care planning (ACP) program is feasible in daily clinical practice for glioblastoma patients. We aimed to develop an ACP program and assess the preferred content, the best time to introduce such a program in the disease trajectory, and possible barriers and facilitators for participation and implementation. Methods A focus group with health care professionals (HCPs) and individual semi-structured interviews with patients and proxies (of both living and deceased patients) were conducted. Results All predefined topics were considered relevant by participants, including the current situation, worries/fears, (supportive) treatment options, and preferred place of care/death. Although HCPs and proxies of deceased patients indicated that the program should be implemented relatively early in the disease trajectory, patient-proxy dyads were more ambiguous. Several patient-proxy dyads indicated that the program should be initiated later in the disease trajectory. If introduced early, topics about the end of life should be postponed. A frequently mentioned barrier for participation was that the program would be too confronting, while a facilitator was adequate access to information. Conclusion This study resulted in an ACP program specifically for glioblastoma patients. Although participants agreed on the program content, the optimal timing of introducing such a program was a matter of debate. Our solution is to offer the program shortly after diagnosis but let patients and proxies decide which topics they want to discuss and when. The impact of the program on several patient- and care-related outcomes will be evaluated in the next step. Show less
Rickstal, R. van; Vleminck, A. de; Aldridge, M.D.; Morrison, S.R.; Koopmans, R.T.; Steen, J.T. van der; ... ; Block, L. van den 2019
Objective To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and... Show moreObjective To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes. Method Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches. Result Eighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes.Significance of results. Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps. Show less
Background. Advance care planning (ACP) involves important decision making about future medical needs. The high-volume and disparate nature of ACP research makes it difficult to grasp the evidence... Show moreBackground. Advance care planning (ACP) involves important decision making about future medical needs. The high-volume and disparate nature of ACP research makes it difficult to grasp the evidence and derive clear policy lessons for policymakers and clinicians.Aim. The aim of this study was to synthesize ACP research evidence and identify relevant contextual elements, program features, implementation principles, and impacted outcomes to inform policy and practice.Design. An overview of systematic reviews using the Cochrane Handbook of Systematic Reviews of Interventions was performed. Study quality was assessed using a modified version of the AMSTAR (A MeaSurement Tool to Assess Reviews) tool.Data Sources. MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE were searched for ACP-related research from inception of each database to April 2017. Searches were supplemented with gray literature and manual searches. Eighty systematic reviews, covering over 1660 original articles, were included in the analysis.Results. Legislations, institutional policies, and cultural factors influence ACP development. Positive perceptions toward ACP do not necessarily translate into more end-of-life conversations. Many factors related to patients' and providers' attitudes, and perceptions toward life and mortality influence ACP implementation, decision making, and completion. Limited, low-quality evidence points to several ACP benefits, such as improved end-of-life communication, documentation of care preferences, dying in preferred place, and health care savings. Recurring features that make ACP programs effective include repeated and interactive discussion sessions, decision aids, and interventions targeting multiple stakeholders.Conclusions. Preliminary evidence highlights several elements that influence the ACP process and provides a variety of features that could support successful, effective, and sustainable ACP implementation. However, this evidence is compartmentalized and limited. Further studies evaluating ACP as a unified program and assessing the impact of ACP for different populations, settings, and contexts are needed to develop programs that are able to unleash ACP's full potential. (C) 2018 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/bync-nd/4.0/). Show less
Steen, J.T. van der; Galway, K.; Carter, G.; Brazil, K. 2016
