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
BackgroundNon-communicable diseases are currently the leading cause of death in the Netherlands. Meeting the increasingly complex care needs of patients with these diseases is demanding for society... Show moreBackgroundNon-communicable diseases are currently the leading cause of death in the Netherlands. Meeting the increasingly complex care needs of patients with these diseases is demanding for society and our healthcare services.Specialist palliative care diminishes inappropriate end-of-life care and improves quality of life for patients with advanced cancer and other life-limiting diseases.Aims & MethodsUsing 2 national cross-sectional surveys and 2 population-based observational studies, we assessed the value, availability and accessibility of palliative care in the Dutch healthcare system. Using a modified Delphi technique, we developed a national quality framework for palliative care with key elements for integration with regular care.ResultsTimely provision of generalist and specialist palliative care is associated with significantly less potentially inappropriate end-of-life care for patients with advanced cancer.The majority of patients with cancer received no palliative care or only in their last weeks or days of life. Specialist palliative care teams were found to be available in almost all hospitals, but referrals to these teams were consistently low. Our findings implicate a limited availability and accessibility of palliative care.Eight key elements of the Netherlands Quality Framework for Palliative Care were prioritised to improve availability and accessibility to quality palliative care. Show less
Dementia is a progressive, life-limiting disease. A palliative approach to care, that focuses on the quality of life of people with dementia and their relatives, is therefore indicated. Advance... Show moreDementia is a progressive, life-limiting disease. A palliative approach to care, that focuses on the quality of life of people with dementia and their relatives, is therefore indicated. Advance care planning is core to palliative care. Relatives play a major role in this, because people with dementia often become unable to indicate their preferences for future care. Palliative dementia care is still sub optimally implemented, however. Nursing home staff and relatives of people with dementia need information about dementia and palliative care to ensure it is optimally implemented. Also, ongoing communication between everyone involved in the care of a person with dementia is required, including discussions about future care needs. This facilitates a palliative care approach in dementia. These conclusions result from a survey among elderly care physicians, a systematic review, care plan data in nursing homes and an intervention study in two nursing homes: the mySupport study. It appears that relatives want timely information about the end of life with dementia. That way they can prepare. Although physicians are usually the ones who educate relatives, nursing staff often have a stronger relationship with relatives. After training, they can play an important role in providing information. Show less
Objectives: Little direction exists on how to effectively implement palliative care for patients with COPD. In the COMPASSION study, we developed, executed, and evaluated a multifaceted... Show moreObjectives: Little direction exists on how to effectively implement palliative care for patients with COPD. In the COMPASSION study, we developed, executed, and evaluated a multifaceted implementation strategy to improve the uptake of region-tailored palliative care intervention components into routine COPD care. We evaluated the implementation strategy and assessed the implementation process, barriers, and facilitators. Methods: A mixed methods process evaluation was performed. Primary and secondary healthcare providers in four hospital regions in the Netherlands were trained. Patients identified during hospitalisation for an acute exacerbation received palliative care and were followed for a year. Various sources were used: process data, questionnaires including the End-of-life Professional Caregiver Survey (EPCS), medical records, monitoring meetings, and interviews. The Consolidated Framework of Implementation Research (CFIR) was used to categorize implementation determinants. Results: The training sessions with roleplay were positively evaluated and increased professionals' self-efficacy in providing palliative care statistically significantly. Of 98 patients identified, 44 (44.9%) received one or more palliative care conversations at the outpatient clinic. Having those conversations was highly valued by healthcare providers because it led to clarity and peace of mind for the patient and higher job satisfaction. Coordination and continuity remained suboptimal. Most important barriers to implementation were time constraints, the COVID-19 pandemic, and barriers related to transmural and interdisciplinary collaboration. Facilitators were the systematic screening of patients for palliative care needs, adapting to the patient's readiness, conducting palliative care conversations with a pulmonologist and a COPD nurse together, and meeting regularly with a small team led by a dedicated implementation leader. Conclusions: Providing integrated palliative care for patients with COPD is highly valued by healthcare providers but remains challenging. Our findings will guide future implementation efforts. Future research should focus on how to optimize transmural and interdisciplinary collaboration. Show less
This thesis aimed to find opportunities to improve proactivity and patient-centredness in palliative care, focussing on education and care outcomes. The 2009 national blueprint on medical education... Show moreThis thesis aimed to find opportunities to improve proactivity and patient-centredness in palliative care, focussing on education and care outcomes. The 2009 national blueprint on medical education and the Dutch medical curricula did not comprise all essential elements about end-of-life care. Factors associated with approaching death in patients with advanced cancer visiting the LUMC’s Emergency Department (ED) in the last three months of life were lung cancer, neurologic deterioration, dyspnoea, hypercalcemia and jaundice. Patients with haematological malignancies received more potentially inappropriate care than advanced cancer patients. They rarely had limitations on life-sustaining treatments, although they often died of disease progression or treatment toxicity. The surprise question (SQ) is a simple tool to identify patients with palliative care needs . Adding poor performance status to the SQ improved the predictive value for one-year mortality in advanced cancer patients visiting the LUMC’s ED. The Leiden Guide on Palliative Care (LGP) was developed by the Centre of Expertise in Palliative Care to assess symptom burden and information needs. Patients and family wanted information about current problems and about their worries. Patients, family and clinicians found the LGP helpful. Using their input, the LGP was improved for use by generalist palliative care clinicians. 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
Dijxhoorn, A.F.; Raijmakers, N.; Linden, Y. van der; Leget, C.; Brom, L. 2022
Objectives. Many aspects of palliative care, such as managing (complicated) symptoms, conductinggoals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians.Previous... Show moreObjectives. Many aspects of palliative care, such as managing (complicated) symptoms, conductinggoals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians.Previous research on the emotional impact of providing palliative care was mainlydone in specialist settings. However, the majority of palliative care is provided by clinicianswho are not specialized in palliative care, and can be supported by palliative care specialistsonly when needed. Therefore, this study aimed to gain insight into the emotional impactof providing palliative care on clinicians, both palliative care generalists and specialists.Methods. A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) workingin hospitals, home care, or nursing homes in the Netherlands was conducted. BetweenFebruary and June 2019, 13 palliative care generalists and 8 specialists were interviewed.Interviews were thematically analyzed by two researchers.Results. All clinicians considered the emotional impact of providing palliative care to be substantialand experienced both positive and negative aspects of providing palliative care. Severalaspects of providing palliative care can support or undermine emotional stability. These socalledfacilitators and barriers, such as practicing self-care and complexity of palliative care,were found at three different levels: individual, team, and organization.Significance of results. Although clinicians experience providing palliative care as meaningfuland valuable, the emotional impact is considerable. Negative and positive aspects often coexist.Further insight into the dynamics and magnitude of the emotional impact of providingpalliative care is needed in order to create a healthy working environment and develop adequateinterventions. Show less
Boddaert, M.S.; Stoppelenburg, A.; Hasselaar, J.; Linden, Y.M. van der; Vissers, K.C.P.; Raijmakers, N.J.H.; Brom, L. 2021
Background Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited... Show moreBackground Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited. To identify areas for improvement of SPCTs' service penetration, we explored the characteristics and level of integration of palliative care programmes and SPCTs in Dutch hospitals and we assessed the relation between these characteristics and specialist palliative care referral rates. Methods We performed a secondary analysis of a national cross-sectional survey conducted among hospitals in the Netherlands from March through May 2018. For this survey, a previously developed online questionnaire, containing 6 consensus-based integration indicators, was sent to palliative care programme leaders in all 78 hospitals. For referral rate we calculated the number of annual inpatient referrals to the SPCT as a percentage of the number of total annual hospital admissions. Referral rate was dichotomized into high (>= third quartile) and low (< third quartile). Characteristics of SPCTs with high and low referral rate were compared using univariate analyses. P-values < 0.05 were considered significant. Results In total, 63 hospitals (81%) participated in the survey, of which 62 had an operational SPCT. The palliative care programmes of these hospitals consisted of inpatient consultation services (94%), interdisciplinary staffing (61%), outpatient clinics (45%), dedicated acute care beds (21%) and community-based palliative care (27%). The median referral rate was 0.56% (IQR 0.23-1.0%), ranging from 0 to 3.7%. Comparing SPCTs with high referral rate (>= 1%, n = 17) and low referral rate (< 1%, n = 45) showed significant differences for SPCTs' years of existence, staffing, their level of education, participation in other departments' team meetings, provision of education and conducting research. With regard to integration, significant differences were found for the presence of outpatient clinics and timing of referrals. Conclusion In the Netherlands, palliative care programmes and specialist palliative care teams in hospitals vary in their level of integration and development, with more mature teams showing higher referral rates. Appropriate staffing, dedicated outpatient clinics, education and research appear means to improve service penetration and timing of referral for patients with advanced diseases. Show less
Engel, M.; Stoppelenburg, A.; Ark, A. van der; Bols, F.M.; Bruggeman, J.; Janssens-van Vliet, E.C.J.; ... ; Heide, A. van der 2021
BackgroundIn the Netherlands, healthcare professionals attending patients in the last phase of life, can consult an expert palliative care team (PCT) in case of complex problems. There are two... Show moreBackgroundIn the Netherlands, healthcare professionals attending patients in the last phase of life, can consult an expert palliative care team (PCT) in case of complex problems. There are two types of PCTs: regional PCTs, which are mainly consulted by general practitioners, and hospital PCTs, which are mainly consulted by healthcare professionals in the hospital. Integration of these PCTs is expected to facilitate continuity of care for patients receiving care in different settings. We studied facilitators and barriers in the process of developing and implementing an integrated transmural palliative care consultation service.MethodsA multiple case study was performed in four palliative care networks in the southwest Netherlands. We aimed to develop an integrated transmural palliative care consultation service. Researchers were closely observing the process and participated in project team meetings. A within-case analysis was conducted for each network, using the Consolidated Framework for Implementation Research (CFIR). Subsequently, all findings were pooled.ResultsIn each network, project team members thought that the core goal of a transmural consultation service is improvement of continuity of palliative care for patients throughout their illness trajectory. It was nevertheless a challenge for hospital and non-hospital healthcare professionals to arrive at a shared view on goals, activities and working procedures of the transmural consultation service. All project teams experienced the lack of evidence-based guidance on how to organise the service as a barrier. The role of the management of the involved care organisations was sometimes perceived as unsupportive, and different financial reimbursement systems for hospital and out-of-hospital care made implementation of a transmural consultation service complex. Three networks managed to develop and implement a transmural service at some level, one network did not manage to do so.ConclusionsHealthcare professionals are motivated to collaborate in a transmural palliative care consultation service, because they believe it can contribute to high-quality palliative care. However, they need more shared views on goals and activities of a transmural consultation service, more guidance on organisational issues and appropriate financing. Further research is needed to provide evidence on benefits and costs of different models of integrated transmural palliative care consultation services. Show less
Klapwijk, M.S.; Dekker, N.L.; Caljouw, M.A.A.; Achterberg, W.P.; Steen, J.T. van der 2020
BackgroundThe Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent... Show moreBackgroundThe Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent experiences with its application in a nursing home setting related to its implementation and staff competencies. The aim of this study is to understand how the LCP is being used in the context of the nursing home, including for residents with dementia, and experienced from the perspectives of those responsible for medical treatment in nursing homes.MethodsA mixed-methods approach was used, consisting of a survey followed by interviews. A link to a 9-item online survey with closed and open-ended questions was emailed to all physicians and nurse practitioners of 33 care organisations with nursing homes in three regions of the Netherlands (North, West and South). In addition, 10 respondents with particularly positive or negative experiences were selected for semi-structured interviews.ResultsThe survey was completed by 159 physicians and nurse practitioners. The respondents were very positive on the content and less positive on the use of the LCP, although they reported difficulties identifying the right time to start the LCP, especially in case of dementia. Also using the LCP was more complicated after the implementation of the electronic health record. The LCP was judged to be a marker of quality for the assessment of symptoms in the dying phase and communication with relatives.ConclusionAn instrument that prompts regular assessment of a dying person was perceived by those responsible for (medical) care to contribute to good care. As such, the LCP was valued, but there was a clear need to start it earlier than in the last days or hours of life, a need for a shorter version, and for integration of the LCP in the electronic health record. Regular assessments with an instrument that focusses on quality of care and good symptom control can improve palliative care for nursing home residents with and without dementia. Show less
Alili, M. el; Smaling, H.J.A.; Joling, K.J.; Achterberg, W.P.; Francke, A.L.; Bosmans, J.E.; Steen, J.T. van der 2020
Background: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also... Show moreBackground: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia.Methods: Nursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated.Results: The Namaste Care Family program was more effective than usual care in terms of QUALID (- 0.062, 95%CI: - 0.40 to 0.28), QALY (0.0017, 95%CI: - 0.059 to 0.063) and GAIN (0.075, 95%CI: - 0.20 to 0.35). Total societal costs were lower for the Namaste Care Family program as compared to usual care (- 552 euro, 95%CI: - 2920 to 1903). However, these differences were not statistically significant. The probability of cost-effectiveness at a ceiling ratio of 0 euro/unit of effect extra was 0.70 for the QUALID, QALY and GAIN.Conclusions: The Namaste Care Family program is dominant over usual care and, thus, cost-effective, although statistical uncertainty was considerable. Show less
Verhoef, M.J.; Nijs, E. de; Horeweg, N.; Fogteloo, J.; Heringhaus, C.; Jochems, A.; ... ; Linden, Y. van der 2020
Purpose Patients with advanced cancer commonly visit the emergency department (ED) during the last 3 months of life. Identification of these patients and their palliative care needs help initiating... Show morePurpose Patients with advanced cancer commonly visit the emergency department (ED) during the last 3 months of life. Identification of these patients and their palliative care needs help initiating appropriate care according to patients' wishes. Our objective was to provide insight into ED visits of advanced cancer patients at the end of life. Methods Adult palliative patients with solid tumours who died < 3 months after their ED visit were included (2011-2014). Patients, ED visits, and follow-up were described. Factors associated with approaching death were assessed using Cox proportional hazards models. Results Four hundred twenty patients were included, 54.5% was male, median age 63 years. A total of 54.6% was on systemic anti-cancer treatments and 10.5% received home care >= 1 per day. ED visits were initiated by patients and family in 34.0% and 51.9% occurred during out-of-office hours. Dyspnoea (21.0%) or pain (18.6%) were most reported symptoms. Before the ED visit, limitations on life-sustaining treatments were discussed in 33.8%, during or after the ED visit in 70.7%. Median stay at the ED was 3:29 h (range 00:12-18:01 h), and 319 (76.0%) were hospitalized. Median survival was 18 days (IQ range 7-41). One hundred four (24.8%) died within 7 days after the ED visit, of which 71.2% in-hospital. Factors associated with approaching death were lung cancer, neurologic deterioration, dyspnoea, hypercalcemia, and jaundice. Conclusion ED visits of advanced cancer patients often lead to hospitalization and in-hospital deaths. Timely recognition of patients with limited life expectancies and urgent palliative care needs, and awareness among ED staff of the potential of ED-initiated palliative care may improve the end-of-life trajectory of these patients. Show less
Objective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about... Show moreObjective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about SDM, a question prompt list, and values clarification methods. Study 1. A first veersion was presented to 13 patients, 8 relatives and 14 bereaved relatives in interviews. Study 2. A second version was used by 18 patients in a pilot study. Patients and oncologists were interviewed, patients were surveyed, and consultations were audio-recorded.Results: Respondents reported that the aid facilitated patient control over information, raised choice awareness and promoted elaboration. Risks were identified, most importantly that the aid might upset patients. Also, some respondents reported that the PCA did not, or would not support decision making because they felt sufficiently competent, did not perceive a role for themselves, or did not perceive that the decision required elaboration.Conclusions: Opinions on the usefulness of the PCA varied. It was challenging to raise awareness about the presence of a choice, and to find a balance between comprehensive information and sensitivity.Practice implications: A future study should demonstrate whether the PCA can improve SDM, and whether this effect is stronger when oncologists receive training. (C) 2018 Elsevier B.V. All rights reserved. Show less
Boogaard, J.A.; Vet, H.C.W. de; Soest-Poortvliet, M.C. van; Anema, J.R.; Achterberg, W.P.; Steen, J.T. van der 2018
