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The surprise question screening tool ("Would I be surprised if this person died within the next 12 months?") was initially developed to identify possible palliative care needs. One controversial topic regarding the surprise question is whether it should be used as a prognostic tool (predicting survival) for patients with life-limiting illnesses. In this "Controversies in Palliative Care" article, three groups of expert clinicians independently answered this question. All experts provide an overview of current literature, practical advice, and opportunities for future research. All experts reported on the inconsistency of the prognostic capabilities of the surprise question. Two of the three expert groups felt that the surprise question should not be used as a prognostic tool due to these inconsistencies. The third expert group felt that the surprise question should be used as a prognostic tool, particularly for shorter time frames. The experts all highlighted that the original rationale for the surprise question was to trigger a further conversation about future treatment and a potential shift in the focus of the care, identifying patients who many benefit from specialist palliative care or advance care planning; however, many clinicians find this discussion a difficult one to initiate. The experts agreed that the benefit of the surprise question comes from its simplicity: a one-question tool that requires no specific information about the patient's condition. More research is needed to better support the application of this tool in routine practice, particularly in noncancer populations. [ABSTRACT FROM AUTHOR]

Background: The clinical outcomes of Spinal Cord Stimulation (SCS) therapy in patients with a Failed Back Surgery Syndrome (FBSS) is mostly done by standardized pain and quality of life measurements instruments and hardly account for personal feelings and needs as a basis for a patient-centred approach and shared decision making. Objectives: The objective of this study is to explore perspectives on personal health and quality of life (QoL) in FBSS patients concerning their physical-, psychological and spiritual well-being prior to receiving an SCS system. Methods: We performed face-to-face, semi-structured, in-depth interviews to obtain descriptive and detailed data on personal health, guided by the Web diagram of Positive Health (Huber et al.) and a topic list. The following main topics were assessed qualitatively: 1) Bodily functioning, 2) Mental function and perception 3) Spiritual dimension, 4) Quality of life, 5) Social and societal participation and 6) Daily functioning. Results: Seventeen FBSS patients (eight male, nine female) were included from April–November 2019 at the department of pain medicine in the Albert Schweitzer Hospital in the Netherlands. Median age 49 years; range 28 to 67 years, and patients underwent between one and five lumbar surgical operations. The duration of their chronic pain was between four and 22 years. After analyzing the interviews, three themes emerged: 1) dealing with chronic pain, 2) the current situation regarding aspects of positive health, and 3) future perspectives on health and quality of life. These themes arose from eleven categories and a hundred ninety codes. Conclusion: This qualitative study explored FBSS patients 'views on their health and the ability to adapt to daily life having complex chronic pain, and showed that patients experienced shortcomings in daily life within the six dimensions of the Web diagram of Positive Health before the SCS implant. [ABSTRACT FROM AUTHOR]

Background There is a wide gap between knowledge about palliative care and its application in everyday clinical practice, affecting many patients in our ageing population. However, changing health care practice is a complex and challenging process. Therefore, the EU funded IMplementation of quality indicators in PAlliative Care sTudy (IMPACT) project aims to develop optimal implementation strategies to improve the organization of palliative care for people with cancer or with dementia in Europe. Methods and design The organization of palliative care in Europe will be mapped to develop and prepare strategies to improve it, and an overview of barriers and incentives regarding successful organizational changes in palliative care will be undertaken. A pre-test with a set of quality indicators (QIs), developed within the project, will be used to identify aspects of the organization of palliative care requiring change in hospitals, nursing homes, hospices, and primary care in five European countries. Based on the results of the pre-test, each setting will be invited to prioritise and improve aspects of their organization that appeared weak. The improvement objective they choose will be tailored to national and setting-specific barriers. Finally, a post-test with the same QIs will determine the effectiveness of the strategies used. An extensive process analysis will be conducted throughout the entire study. Discussion It is expected that the IMPACT project will provide professionals and policy makers useful tools to facilitate effective implementation of high-quality palliative cancer and dementia care in different settings in Europe. [ABSTRACT FROM AUTHOR]

To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries. A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire. 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland. The Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types. The FPPFC score was the lowest in Finland (1.4 ± 0.8) and the highest in Italy (2.2 ± 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with on-site physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%). The relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life. Training in end-of-life communication to physicians providing care for LTCF residents is recommended. [ABSTRACT FROM AUTHOR]

Background: COPD causes high morbidity and mortality, emphasizing the need for palliative care. Aim: To assess the effectiveness of palliative care in patients with COPD. Design: Cluster randomized controlled trial (COMPASSION study; Netherlands Trial Register (NTR): NL7644, 07-04-2019). Healthcare providers within the intervention group were trained to implement palliative care components into routine COPD care. Patients completed questionnaires at baseline, after 3 and 6 months; medical records were assessed after 12 months. The primary outcome was quality of life (FACIT-Pal). Secondary outcomes were anxiety, depression, spiritual well-being, satisfaction with care, acute healthcare use, documentation of life-sustaining treatment preferences and place of death. Generalized linear mixed modelling was used for analyses. Setting: Eight hospital regions in the Netherlands. Participants: Patients hospitalized for an acute exacerbation of COPD and positive ProPal-COPD score. Results: Of 222 patients included, 106 responded to the questionnaire at 6 months. Thirty-six of 98 intervention patients (36.7%) received the intervention. Intention-to-treat-analysis showed no effect on the primary outcome (adjusted difference: 1.09; 95% confidence interval: −5.44 to 7.60). In the intervention group, fewer intensive care admissions for COPD took place (adjusted odds ratio: 0.21; 95% confidence interval: 0.03–0.81) and strong indications were found for fewer hospitalizations (adjusted incidence rate ratio: 0.69; 95% confidence interval: 0.46–1.03). Conclusions: We found no evidence that palliative care improves quality of life in patients with COPD. However, it can potentially reduce acute healthcare use. The consequences of the COVID-19 pandemic led to suboptimal implementation and insufficient power, and may have affected some of our findings. [ABSTRACT FROM AUTHOR]

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 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. Trial registration The COMPASSION study is registered in the Netherlands Trial Register (NTR): NL7644. Registration date: 07/04/2019. [ABSTRACT FROM AUTHOR]

Background: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans. Aim: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients' care plans. Design: A mixed methods pre-post study, including self-assessment questionnaires, evaluation of videos with simulated consultations (applied competence) and medical record review (implementation). Setting/participants: Three palliative care teams including nurses (N = 21), physicians (N = 14) and spiritual caregivers (N = 3). Results: The questionnaires showed an improvement on 'Patient and family-centred communication' of the End-of-life professional caregiver survey (+0.37, p < 0.01; the 8-item S-EOLC (+0.54, p < 0.01) and regarding the Spiritual Care Competence Scale, on the three subscales used (+0.27, p < 0.01, +0.29, p < 0.01 and +0.32, p < 0.01). Video evaluations showed increased attention being paid to patient's aims and needs. The medical record review showed an increase in anticipation on the non-somatic dimension (OR: 2.2, 95% CI: 1.2–4.3, p < 0.05) and, using the Mount Vernon Cancer Network assessment tool, addressing spiritual issues (OR: 10.9, 95% CI: 3.7–39.5, p < 0.001). Conclusions: Our training intervention resulted in increased palliative care professionals' competence in identifying and exploring patients' spiritual issues, and their integration in multidimensional proactive palliative care plans. The intervention directly addresses patients' spiritual concerns and adds value to their palliative care plans. [ABSTRACT FROM AUTHOR]

Background: A high percentage of people dying at home, and a low percentage of people being admitted to hospital and dying there are regarded as indicators of appropriate care at the end of life. However, performance standards for these quality indicators are often lacking, which makes it difficult to state whether an indicator score falls between the ranges of good or poor quality care. The aim of this study was to assess quality indicators concerning place of death and hospital care utilization in people with diseases relevant for palliative care, and to establish best practice performance standards based on indicator scores in 31 regions in the Netherlands. Methods: A retrospective nationwide population-based observational study was conducted, using routinely collected administrative data concerning persons who died in 2017 in the Netherlands with underlying causes relevant for palliative care (N = 109,707). Data from four registries were linked for analysis. Scores on eight quality indicators concerning place of death and hospital care utilization were calculated, and compared across 31 healthcare insurance regions to establish relative benchmarks. Results: On average, 36.4% of the study population died at home (range between regions 30.5%-42.6%) and 20.4% in hospital (range 16.6%-25.5%). Roughly half of the population who received hospital care at any time in the last year of life were found to (also) receive hospital care in the last month of life. In the last month, 32.0% of the study population were admitted to hospital (range 29.4-36.4%), 5.3% to an Intensive Care Unit (range 3.2-6.9%) and 23.9% visited an Emergency Department (range 21.0-27.4%). In the same time period, less than 1% of the study population was resuscitated in hospital or received tube or intravenous feeding in hospital. Conclusions: The variation between regions points towards opportunities for practice improvement. The best practice performance standards as set in this study serve as ambitious but attainable targets for those regions that currently do not meet the standards. Policymakers, healthcare providers and researchers can use the suggested performance standards to further analyze causes of variance between regions and develop and test interventions that can improve practice. [ABSTRACT FROM AUTHOR]

Background: Palliative patients have to cope with their disease and impending death. Knowing what this means for a patient is crucial for person-centred care. Although guidelines state it is a GP core task to explore existential issues of palliative patients, this is not standard practice. Aim: Exploring Dutch GPs' perceived role regarding addressing the existential dimension of palliative patients, and which vocabulary GPs use when doing this. Design and setting: Qualitative study amongst Dutch GPs. Participants were recruited by purposive sampling and snowballing, considering gender, working experience and ideological personal beliefs. Method: Semi-structured in-depth interviews were performed, transcribed and analysed using content analysis. Results: Seventeen GPs participated. Three themes were identified: Language, Perceived role and Practice. Interviewees generally saw it as their role to pay attention to the existential dimension of palliative patients. However, not all knew how to define this role, or how to refer patients with existential struggles to a spiritual counsellor. The multidisciplinary Dutch guideline 'Existential and Spiritual Aspects of Palliative Care' seemed largely unknown. Interviewees mostly fulfilled their role in an intuitive, pragmatic way. Questions such as "What does it mean for you to be seriously ill?" or "Do you have support from someone or something?" fitted daily practice. Conclusion: This study emphasizes the importance of basic GP education in exploring existential issues. The coexistence of a professionally obliged attention and an intuitive approach seems to be in conflict. We recommend appropriate training for GPs, research on the potential enhancement of collaboration between GPs and spiritual counsellors and implementation of the relevant guideline on well-known platforms. [ABSTRACT FROM AUTHOR]

Background: A high percentage of people dying at home, and a low percentage of people being admitted to hospital and dying there are regarded as indicators of appropriate care at the end of life. However, performance standards for these quality indicators are often lacking, which makes it difficult to state whether an indicator score falls between the ranges of good or poor quality care. The aim of this study was to assess quality indicators concerning place of death and hospital care utilization in people with diseases relevant for palliative care, and to establish best practice performance standards based on indicator scores in 31 regions in the Netherlands. Methods: A retrospective nationwide population-based observational study was conducted, using routinely collected administrative data concerning persons who died in 2017 in the Netherlands with underlying causes relevant for palliative care (N = 109,707). Data from four registries were linked for analysis. Scores on eight quality indicators concerning place of death and hospital care utilization were calculated, and compared across 31 healthcare insurance regions to establish relative benchmarks. Results: On average, 36.4% of the study population died at home (range between regions 30.5%-42.6%) and 20.4% in hospital (range 16.6%-25.5%). Roughly half of the population who received hospital care at any time in the last year of life were found to (also) receive hospital care in the last month of life. In the last month, 32.0% of the study population were admitted to hospital (range 29.4-36.4%), 5.3% to an Intensive Care Unit (range 3.2-6.9%) and 23.9% visited an Emergency Department (range 21.0-27.4%). In the same time period, less than 1% of the study population was resuscitated in hospital or received tube or intravenous feeding in hospital. Conclusions: The variation between regions points towards opportunities for practice improvement. The best practice performance standards as set in this study serve as ambitious but attainable targets for those regions that currently do not meet the standards. Policymakers, healthcare providers and researchers can use the suggested performance standards to further analyze causes of variance between regions and develop and test interventions that can improve practice. [ABSTRACT FROM AUTHOR]

Background: An advanced cancer patient's life is often disturbed by fear of cancer recurrence, cancer progress, approaching suffering, and fear of dying. Consequently, the role of the medical oncologist is not only to provide best quality anti-cancer treatment, but also to address the impact of disease and treatment on a patient's life, the lived illness experience. We aimed to gain insights into whether and how medical oncologists working at an outpatient clinic identify and explore lived illness experiences raised by patients with advanced cancer, and how this influences patients' responses. Methods: Conversation Analysis was applied to analyse 16 verbatim transcribed audio-recorded consultations. Results: We identified 37 fragments in which patients expressed a lived experience from 11 of the 16 consultations. We found differing responses from different oncologists. Patients continued talking about their lived experiences if the listener produced a continuer such as humming or tried to capture the experience in their own words. In contrast, a response with optimistic talking or the presentation of medical evidence prevented patients from further unfolding the experience. In consultations in which the lived illness experience was most extensively unfolded, medical oncologists and patients could constantly see each other's facial expressions. Conclusions: When a patient with advanced cancer spontaneously introduces a lived illness experience, it helps to identify and explore it when the medical oncologist produces a continuer or tries to capture this experience in their own words. Our findings can be implemented in training sessions, followed by frequent reinforcement in daily care. [ABSTRACT FROM AUTHOR]

Background: Needs assessment tools can facilitate healthcare professionals in timely recognition of palliative care needs. Despite the increased attention for implementation of such tools, most studies provide little or no attention to the context of implementation. The aim of this study was to explore factors that contribute positively and negatively to timely screening of palliative care needs in advanced chronic heart failure. Methods: Qualitative study using individual interviews and focus groups with healthcare professionals. The data were analysed using a deductive approach. The Consolidated Framework for Implementation Research was used to conceptualise the contextual factors. Results: Twenty nine healthcare professionals with different backgrounds and working in heart failure care in the Southern and Eastern parts of the Netherlands participated. Several factors were perceived to play a role, such as perception and knowledge about palliative care, awareness of palliative care needs in advanced chronic heart failure, perceived difficulty when and how to start palliative care, limited acceptance to treatment boundaries in cardiology, limited communication and collaboration between healthcare professionals, and need for education and increased attention for palliative care in advanced chronic heart failure guidelines. Conclusions: This study clarified critical factors targeting patients, healthcare professionals, organisations to implement a needs assessment tool for timely recognition of palliative care needs in the context of advanced chronic heart failure. A multifaceted implementation strategy is needed which has attention for education, patient empowerment, interdisciplinary collaboration, identification of local champions, chronic heart failure specific guidelines and culture. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted. [ABSTRACT FROM AUTHOR]

Refractory breathlessness is a devastating symptom in chronic obstructive pulmonary disease (COPD). Symptom-focused breathlessness services, involving palliative care teams, offer individualized support but are not yet widely available for people with nonmalignant disease among which COPD. Our primary aim was to demonstrate the feasibility of setting up a breathlessness service specifically for COPD patients within a respiratory outpatient clinic. Our secondary aims were to assess how many sessions patients need to complete the intervention; to obtain an indication of effect size (on the Chronic Respiratory Questionnaire (CRQ), subset mastery domain); and to evaluate patient and professional satisfaction. We conducted a non-randomized single-center feasibility study. Participants had COPD and refractory breathlessness. During at least one session with a respiratory nurse and a pulmonologist, and one session with a physiotherapist, patients learned non-pharmacological interventions to manage breathlessness. Of 34 screened patients, 19 were included. All completed the intervention. A median of two clinical visits and two telephone calls were needed to complete the intervention. The mean improvement of 1.55 in CRQ, mastery domain, significantly exceeded the clinically important difference of 0.5. The service was rated as excellent by the eight patients who completed the survey. The health professional team gave positive feedback on the experience of delivering the intervention. Delivery of a breathlessness service for COPD outpatients with refractory breathlessness appears feasible, easy to implement in a respiratory outpatient clinic, and has the potential to be effective. A randomized controlled clinical trial is needed to test effectiveness and cost-effectiveness in this context. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, euthanasia has been regulated by law since 2002. In the past decade, a growing number of persons with dementia requested for euthanasia, and more requests were granted. A euthanasia request from a patient with advanced dementia (PWAD) can have a major impact on a general practitioner (GP). We aimed to get insights in the views of Dutch GPs on euthanasia concerning this patient group. Methods: A postal survey was sent to 894 Dutch GPs. Questions were asked about a case vignette about a PWAD who was not able to confirm previous wishes anymore. Quantitative data were analyzed with descriptive statistics. Results: Of the 894 GPs approached, 422 (47.3%) completed the survey. One hundred seventy-eight GPs (42.2%) did not agree with the statement that an Advance Euthanasia Directive (AED) can replace an oral request if communication with the patient concerned has become impossible. About half of the respondents (209; 49.5%) did not agree that the family can initiate a euthanasia trajectory, 95 GPs (22.5%) would accept such a family initiative and 110 GPs (26.1%) would under certain conditions. Discussion: In case of a PWAD, when confirming previous wishes is not possible anymore, about half of the Dutch GPs would not accept an AED to replace verbal or non-verbal conformation nor consider performing euthanasia; a minority would. Our study shows that, probably due to the public debate and changed professional guidelines, conflicting views have arisen among Dutch GPs about interpretation of moral, ethical values considering AED and PWADs. [ABSTRACT FROM AUTHOR]

Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations. [ABSTRACT FROM AUTHOR]

Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations. [ABSTRACT FROM AUTHOR]

Background: In 2020, the COVID-19 pandemic caused an acute risk of deterioration and dying for many, and an urgent need to start advance care planning. Aim: To explore how general practitioners (GPs) experienced discussing values, goals and preferences with patients during COVID-19. Design and setting: Qualitative research in general practice. Methods: Semi-structured interviews for which Dutch GPs were recruited via purposive sampling. Content analysis was used. Results: Fifteen GPs were interviewed. Six themes were identified: (i) urge of advance care planning, (ii) the GP's perceived role in it, (iii) preparations for it, (iv) (proactively) discussing it, (v) essentials for good communication and (vi) advance care planning in the (near) future. Calls for proactively discussing advance care planning in the media and in COVID-guidelines caused awareness of it's importance. GPs envisaged an important role for themselves in initiating it, especially with patients at risk to deteriorate or die from COVID-19. Timing advance care planning appeared difficult but crucial. The recommended digital way of communication was considered problematic due to missing nonverbal communication and difficulties in involving relatives. It was noted that admission to the ICU, which was hardly discussed before the COVID-19 pandemic, should remain a topic during advance care planning. Conclusion: The COVID-19 pandemic brought advance care planning into a new light, GPs were more experienced with discussing it and patients were more aware of their frailty. Because of the nearing 'grey wave', advance care planning should remain top priority. Therefore, it should be central in GP and post-academic training. [ABSTRACT FROM AUTHOR]

Introduction/Aims: Oxaliplatin often causes acute or chronic peripheral neuropathy in patients with an intestinal or pancreatic tumor, but in‐depth insights in its influence on quality of life (QoL) are lacking. We explored the influence of acute oxaliplatin‐induced peripheral neuropathy (OIPN) on daily QoL in these patients. Methods: We performed semistructured interviews with a purposive sample of patients receiving oxaliplatin and possibly experiencing acute OIPN. Interviews were audio‐recorded, transcribed verbatim, and coded by two researchers. Data were analyzed by using the constant comparative method for content analysis with ATLAS.ti software. Results: After nine patients, saturation took place. In total, 11 patients were interviewed. Four themes were extracted from the data: (1) adverse effects, (2) physical (un)well‐being, (3) emotional aspects, and (4) treatment aspects. All participants were suffering from acute OIPN to a certain extent, leading to restrictions in daily activities such as household chores, but also to a decrease in mobility and independency. Other adverse effects such as general malaise and gastrointestinal side effects also influenced the participants' well‐being, as did the diagnosis and prognosis of their disease. Conclusion: Acute OIPN, together with other side effects of chemotherapeutic treatment and the difficulties that come with the diagnosis of cancer and its prognosis, largely influences patients' daily QoL. Managing expectations (by patient education) seems important. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question (" Would I be surprised if this patient were to die within the next 12 months?") is widely used to identify palliative patients, though with low predictive value. To improve timely identification of palliative care needs, we propose an additional Surprise Question (" Would I be surprised if this patient is still alive after 12 months?") if the original Surprise Question is answered with "no." The combination of the two questions is called the Double Surprise Question. Aim: To examine the prognostic accuracy of the Double Surprise Question in outpatients with cancer. Design: A prospective study. Participants: Twelve medical oncologists completed the Double Surprise Question for 379 patients. Results: In group 1 (original Surprise Question "yes": surprised if dead) 92.1% (176/191) of the patients were still alive after 1 year, in group 2a (original and additional Surprise Question "no": not surprised if dead and not surprised if alive) 60.0% (63/105), and in group 2b (original Surprise Question "no," additional Surprise Question "yes": surprised if alive) 26.5% (22/83) (p < 0.0001). The positive predictive value increased by using the Double Surprise Question; 74% (61/83) vs 55% (103/188). Anticipatory palliative care provision and Advance Care Planning items were most often documented in group 2b. Conclusions: The Double Surprise Question is a promising tool to more accurately identify outpatients with cancer at risk of dying within 1 year, and therefore, those in need of palliative care. Studies should reveal whether the implementation of the Double Surprise Question leads to more timely palliative care. [ABSTRACT FROM AUTHOR]

Background: Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for this patient group specifically. Aim: To describe the characteristics of palliative care interventions for patients with COPD and their informal caregivers and review the available evidence on effectiveness and implementation outcomes. Design: Systematic review and narrative synthesis (PROSPERO CRD42017079962). Data sources: Seven databases were searched for articles reporting on multi-component palliative care interventions for study populations containing ⩾30% patients with COPD. Quantitative as well as qualitative and mixed-method studies were included. Intervention characteristics, effect outcomes, implementation outcomes and barriers and facilitators for successful implementation were extracted and synthesized qualitatively. Results: Thirty-one articles reporting on twenty unique interventions were included. Only four interventions (20%) were evaluated in an adequately powered controlled trial. Most interventions comprised of longitudinal palliative care, including care coordination and comprehensive needs assessments. Results on effectiveness were mixed and inconclusive. The feasibility level varied and was context-dependent. Acceptability of the interventions was high; having someone to call for support and education about breathlessness were most valued characteristics. Most frequently named barriers were uncertainty about the timing of referral due to the unpredictable disease trajectory (referrers), time availability (providers) and accessibility (patients). Conclusion: Little high-quality evidence is yet available on the effectiveness and implementation of palliative care interventions for patients with COPD. There is a need for well-conducted effectiveness studies and adequate process evaluations using standardized methodologies to create higher-level evidence and inform successful implementation. [ABSTRACT FROM AUTHOR]

Background: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. Aim: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. Design: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools' development, evaluation, feasibility, and implementation was sought and described. Data sources: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. Results: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. Conclusion: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure. [ABSTRACT FROM AUTHOR]

To examine factors associated with perceived quality of communication with physicians by relatives of dying residents of long-term care facilities (LTCFs). A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. In each LTCF, deaths of residents during the 3 months before the researcher's visit were reported. Structured questionnaires were sent to the identified relatives of deceased residents. A total of 736 relatives of deceased residents in 210 LTCFs (in Belgium, Finland, Italy, the Netherlands, and Poland). The Family Perception of Physician-Family Communication scale (FPPFC) was used to assess the quality of end-of-life (EOL) communication with physicians as perceived by relatives. We applied multilevel linear regression models to find factors associated with the FPPFC score. The quality of EOL communication with physicians was perceived by relatives as higher when the relative spent more than 14 hours with the resident in the last week of the resident's life (b = 0.205; P =.044), and when the treating physician visited the resident at least 3 times in the last week of the resident's life (b = 0.286; P =.002) or provided the resident with palliative care (b = 0.223; P =.003). Relatives with higher emotional burden perceived the quality of EOL communication with physicians as lower (b = −0.060; P <.001). These results had been adjusted to countries and LTCF types with physicians employed on-site or off-site of the facility. The quality of EOL communication with physicians, as perceived by relatives of dying LTCF residents, is associated with the number of physician visits and amount of time spent by the relative with the resident in the last week of the resident's life, and relatives' emotional burden. LTCF managers should organize care for dying residents in a way that enables frequent interactions between physicians and relatives, and emotional support to relatives to improve their satisfaction with EOL communication. [ABSTRACT FROM AUTHOR]

Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities. Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines. Data sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation. Results: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change). Conclusion: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities. [ABSTRACT FROM AUTHOR]

Background: Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change. Methods: We will conduct a cluster RCT in Flanders, Belgium. Fourteen eligible nursing homes will be pair-matched and one from each pair will be randomised to either continue care and education as usual or to receive the ACP+ programme (a multicomponent programme which is delivered stepwise over an eight-month period with the help of an external trainer). Primary outcomes are: nursing home care staff's knowledge of, and self-efficacy regarding ACP. Secondary outcomes are: 1) nursing home care staff's attitudes towards ACP and ACP practices; 2) support staff's and volunteer's ACP practices and 3) support staff's and volunteers' self-efficacy. Measurements will be performed at baseline and eight months post-measurement, using structured self-reported questionnaires. A process evaluation will accompany the outcome evaluation in the intervention group, with measurements throughout and post-intervention to assess implementation, mechanisms of impact and context and will be carried out using a mixed-methods design. Discussion: There is little high-quality evidence regarding the effectiveness and underlying processes of change of ACP in nursing homes. This combined outcome and process evaluation of the ACP+ programme aims to contribute to building the necessary evidence to improve ACP and its uptake for nursing home residents and their family. Trial registration: The study is registered at ClinicalTrials.gov (no. NCT03521206). Registration date: May 10, 2018. Inclusion of nursing homes started March, 2018. Hence, the trial was retrospectively registered but before end of data collection and analyses. [ABSTRACT FROM AUTHOR]

Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a crucial element of palliative care. It improves the quality of end-of-life care and reduces aggressive and needless life-prolonging medical interventions. However, little is known about its application in daily practice. This study aims to examine the application of ACP for patients with cancer in general practice.Methods: We performed a retrospective cohort study in 11 general practices in the Netherlands. Electronic patient records (EPRs) of deceased patients with colorectal or lung cancer were analysed. Data on ACP documentation, correspondence between medical specialist and GP, and health care use in the last year of life were extracted.Results: Records of 163 deceased patients were analysed. In 74% of the records, one or more ACP items were registered. GPs especially documented patients' preferences for euthanasia (58%), palliative sedation (46%) and preferred place of death (26%). Per patient, GPs received on average six letters from medical specialists. These letters mainly contained information regarding medical treatment and rarely ACP items. In the last year of life, patients contacted the GP over 30 times, and 51% visited the emergency department at least once, of whom 54% in the last month.Conclusions: Registration of ACP items in GPs' EPRs appeared to be limited. ACP elements were rarely subject of communication between primary and secondary care, which may impact the continuity of patient care during the last year of life. More emphasis on registration of ACP items and better exchange of information regarding patients' preferences are needed. [ABSTRACT FROM AUTHOR]

Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it. Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks. Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model. Setting/participants: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer. Results: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified. Conclusion: We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers. [ABSTRACT FROM AUTHOR]

Background: Nursing homes are among the most common places of death in many countries. Aim: To determine the quality of dying and end-of-life care of nursing home residents in six European countries. Design: Epidemiological survey in a proportionally stratified random sample of nursing homes. We identified all deaths of residents of the preceding 3-month period. Main outcomes: quality of dying in the last week of life (measured using End-of-Life in Dementia Scales – Comfort Assessment while Dying (EOLD-CAD)); quality of end-of-life care in the last month of life (measured using Quality of Dying in Long-Term Care (QoD-LTC) scale). Higher scores indicate better quality. Setting/participants: Three hundred and twenty-two nursing homes in Belgium, Finland, Italy, the Netherlands, Poland and England. Participants were staff (nurses or care assistants) most involved in each resident’s care. Results: Staff returned questionnaires regarding 1384 (81.6%) of 1696 deceased residents. The End-of-Life in Dementia Scales – Comfort Assessment while Dying mean score (95% confidence interval) (theoretical 14–42) ranged from 29.9 (27.6; 32.2) in Italy to 33.9 (31.5; 36.3) in England. The Quality of Dying in Long-Term Care mean score (95% confidence interval) (theoretical 11–55) ranged from 35.0 (31.8; 38.3) in Italy to 44.1 (40.7; 47.4) in England. A higher End-of-Life in Dementia Scales – Comfort Assessment while Dying score was associated with country (p = 0.027), older age (p = 0.012), length of stay ⩾1 year (p = 0.034), higher functional status (p < 0.001). A higher Quality of Dying in Long-Term Care score was associated with country (p < 0.001), older age (p < 0.001), length of stay ⩾1 year (p < 0.001), higher functional status (p = 0.002), absence of dementia (p = 0.001), death in nursing home (p = 0.033). Conclusion: The quality of dying and quality of end-of-life care in nursing homes in the countries studied are not optimal. This includes countries with high levels of palliative care development in nursing homes such as Belgium, the Netherlands and England. [ABSTRACT FROM AUTHOR]

Background: The provision of high-quality palliative care in nursing homes (NHs) is a major challenge and places demands on the knowledge and skills of the staff. Aim: This study assesses the palliative care knowledge of staff in NHs in Europe. Design: Cross-sectional study using structured survey. Setting/participants: Nurses and care assistants working in 322 representative samples of NHs in Belgium, the Netherlands, England, Finland, Poland and Italy. Palliative care knowledge is measured with the Palliative Care Survey. Scores on the scales range between 0 and 1; higher scores indicate more knowledge. Results: A total of 3392 NH-staff were given a questionnaire, and 2275 responded (67%). Knowledge of basic palliative care issues ranged between 0.20 in Poland (95% confidence interval (CI) 0.19; 0.24) and 0.61 in Belgium (95% CI 0.59; 0.63), knowledge of physical aspects that can contribute to pain ranged between 0.81 in Poland (95% CI 0.79; 0.84) and 0.91 in the Netherlands (95% CI 0.89; 0.93), and knowledge of psychological reasons that can contribute to pain ranged between 0.56 in England (95% CI 0.50; 0.62) and 0.87 in Finland (95% CI 0.83; 0.90). Factors associated with knowledge were country, professional role and having undertaken formal training in palliative care. Conclusions: Knowledge of nurses and care assistants concerning basic palliative care issues appears to be suboptimal in all participating countries, although there is substantial heterogeneity. Education of nursing staff needs to be improved across, but each country may require its own strategy to address the unique and specific knowledge gaps. [ABSTRACT FROM AUTHOR]

Background: An ageing population in the EU leads to a higher need of long-term institutional care at the end of life. At the same time, healthcare costs rise while resources remain limited. Consequently, an urgency to extend our knowledge on factors affecting efficiency of long-term care facilities (LTCFs) arises. This study aims to investigate and explain variation in technical efficiency of end-of-life care within and between LTCFs of six EU countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. In this study, technical efficiency reflects the LTCFs’ ability to obtain maximal quality of life (QoL) and quality of dying (QoD) for residents from a given set of resource inputs (personnel and capacity). Methods: Cross-sectional data were collected by means of questionnaires on deceased residents identified by LTCFs over a three-month period. An output-oriented data-envelopment analysis (DEA) was performed, producing efficiency scores, incorporating personnel and capacity as input and QoL and QoD as output. Scenario analysis was conducted. Regression analysis was performed on explanatory (country, LTCF type, ownership, availability of palliative care and opioids) and case mix (disease severity) variables. Results: 133 LTCFs of only one type (onsite nurses and offsite GPs) were considered in order to reduce heterogeneity. Variation in LTCF efficiency was found across as well as within countries. This variation was not explained by country, ownership, availability of palliative care or opioids. However, in the ‘hands-on care at the bedside’ scenario, i.e. only taking into account nursing and care assistants as input, Poland (p = 0.00) and Finland (p = 0.04) seemed to be most efficient. Conclusions: Efficiency of LTCFs differed extensively across as well as within countries, indicating room for considerable efficiency improvement. Our findings should be interpreted cautiously, as comprehensive comparative EU-wide research is challenging as it is influenced by many factors. [ABSTRACT FROM AUTHOR]

Background: Diagnostic ultrasound is increasingly used by nonradiologists in trauma victims and critically ill patients. In the emergency department, the extended focused assessment with sonography for trauma and Polytrauma Rapid Echo-evaluation Program protocol are often used to assess these patients. Dutch Polytrauma Rapid Echo-evaluation Program-trained Emergency physicians are implementing the use of ultrasound in the emergency department but might encounter barriers to overcome. Objectives: This study aims to explore individual experiences of Dutch emergency physicians. Methods: We performed a qualitative study by conducting semi-structured interviews in Dutch emergency physicians working in a Level 2 emergency department that completed the 2-day Polytrauma Rapid Echo-evaluation Program course at least 1 year before the interviews. Data were analyzed using directed content analysis. Results: Eight emergency physicians employed by eight different hospitals were interviewed. Thirteen categories were identified in the transcribed interviews and these were combined into four general themes: (1) the desire to develop the Emergency Medicine specialty, both nationally and local; (2) incentives to start using ultrasound; (3) exploring practical applications of ultrasound; and (4) barriers faced while implementing emergency physician-performed ultrasound on the emergency department. The interviewees regard the course to be a solid base and are eager to independently perform ultrasound examinations, although challenges are faced. Conclusion: This exploratory study provides essential insight in Dutch emergency physicians implementing ultrasound in their emergency department. It shows that there is a need to develop a quality assurance system and it identified barriers that have to be dealt with. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making (SDM) can be a way for staff to adopt international recommendations advocating the involvement of nursing home residents and their family members in care planning and the development of personalized care plans.Objective: The main aim was to analyze the effects of training nursing home staff in the implementation of SDM on agreement of residents' 'life-and-care plans' with the recommendations (primary outcome) and on family caregivers' quality of life and sense of competence, and staff's job satisfaction (secondary outcomes).Methods: In the intervention condition, staff attended a training program on the use of SDM with residents and family caregivers in the care planning process. In the control condition, care planning as usual took place. For the primary outcome, in-depth qualitative and quantitative analyses of the care plans were performed. Multivariate Permutation Tests were applied to assess the impact on secondary outcomes.Results: Forty-nine residents and family caregivers and 34 professionals were involved. Overall, many of the care plans developed during the intervention showed a high level of agreement with the care planning recommendations. Both Italian and Dutch care plans showed improvement in the number of clear problem statements (p < 0.001). In Italy, significant improvements (p < 0.05) were also found regarding specific care objectives, documentation of objectives met, and of residents and families' involvement. No impact was found on secondary outcomes.Conclusion: The involvement of residents and family caregivers in care planning contributed to an improvement of the residents' care plans, but it did not have an effect on family caregivers and staff outcomes. [ABSTRACT FROM AUTHOR]

Background: Due to the disease’s progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied. Aim: To determine the barriers and facilitators faced by GPs related to ACP with people with dementia. Data sources: We systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl’s method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis. Results: Ten qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia’s decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life. Conclusion: Discussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions. [ABSTRACT FROM AUTHOR]

Abstract: Background: Spinal cord stimulation (SCS) is an effective therapy to reduce pain in patients who suffer from failed back surgery syndrome (FBSS). In order to inform patients optimally prior to this therapy, knowing their expectations is crucial. Methods: Thirteen patients suffering from FBSS and scheduled for SCS were interviewed using a semistructured protocol. Patients were interviewed either at home or at their treating hospital. Data from these interviews were analyzed using directed content analysis. In addition to the qualitative interviews, an adjusted Brief Pain Inventory questionnaire was used to quantify expectations. Results: The expectations of patients with regard to SCS could be subdivided into 13 categories, which could be grouped into 6 general themes: (1) physical well‐being, (2) social well‐being, (3) material well‐being, (4) emotional well‐being, (5) development and activity, and (6) constraints of the procedure of SCS. These findings confirm patients’ expectations about the improvement of their quality of life by SCS for FBSS. This indicates that assessing pain relief is not enough to adequately evaluate the effects of SCS. The small diversity within the studied population and the lack of patient‐to‐patient education are 2 possible limitations of this study. Conclusions: To improve education for patients prior to SCS surgery and to evaluate the effects of SCS, a multidimensional approach needs to be implemented. Possible disadvantages of SCS need to be discussed prior to the treatment. [ABSTRACT FROM AUTHOR]

Background: In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care. Aim: To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year's value for palliative care. Design: The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped. Data sources: A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years. Findings: Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied. Conclusion: The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to--in addition to the EQ-5D--make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year. [ABSTRACT FROM AUTHOR]

Background Many patients with cancer suffer from pain, which is often not optimally treated. In 2008, the evidence-based, multidisciplinary Dutch guideline on the diagnosis and treatment of pain in this patient group was published. We assessed knowledge about and adherence to the guideline by pain specialists. Methods A cross-sectional case vignette survey describing a palliative patient with intractable pancreatic cancer and pain was sent to all 350 Dutch anesthesiologists registered as pain specialists at the Netherlands Association of Anesthesiology. Descriptive statistics were conducted. Results Ninety-three pain specialists completed the questionnaire (27%). The majority appeared to follow the guideline recommendations on pharmacological (99%) and invasive treatment (95%) in the diverse stages of the disease. However, the recommendation to use a one-dimensional pain scale to evaluate the effect of pain treatment and the recommendation to perform a multidimensional pain assessment if the patient in pain is in a deteriorating stage were only followed by a minority of the respondents (23% and 15%, respectively). Conclusions Regarding most recommendations, Dutch pain specialists know and intend to follow the national multidisciplinary cancer pain guideline. Yet, only a minority of them perform structural pain assessment of the patient with cancer pain. However, as the response rate was low (27%), the results should be interpreted with caution and cannot be generalized to the entire population of pain specialists in the Netherlands. We recommend that, in the guideline update and implementation programs, more attention be given to thorough assessment of the patient with pain and cancer. [ABSTRACT FROM AUTHOR]

The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system. [ABSTRACT FROM AUTHOR]

Background: Care planning nowadays is a key activity in the provision of services to nursing home residents. A care plan describes the residents' needs and the actions to address them, providing both individualized and standardized interventions and should be updated as changes in the residents' conditions occur.Objective: The aim of this review was to identify the core elements of the implementation of changes in nursing homes' care plans, by providing an overview of the type of stakeholders involved, describing the implementation strategies used, and exploring how care plans changed.Methods: An integrative literature review was used to evaluate intervention studies taking place in nursing homes. Data were collected from PubMed, CINHAL-EBSCO, and PsycINFO. English language articles published between 1995 and April 2015 were included. Data analysis followed the strategy of Knafl and Whittemore.Results: Twenty-six articles were included. The stakeholders involved were professionals, family caregivers, and patients. Only a few studies directly involved residents and family caregivers in the quality improvement process. The implementation strategies used were technology implementation, audit, training, feedback, and supervision. The majority of interventions changed the residents' care plans in terms of developing a more standardized care documentation that primarily focuses on its quality. Only some interventions developed more tailored care plans that focus on individualized needs.Conclusion: Care plans generally failed in providing both standardized and personalized interventions. Efforts should be made to directly involve residents in care planning and provide professionals with efficient tools to report care goals and actions in care plans. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands. Methods: Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data. Results: Six months after the feasibility trial, focus group interviews with healthcare professionals (n = 10 in Italy; n = 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents' cognitive status that influenced their degree of involvement. Conclusion: Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making. [ABSTRACT FROM AUTHOR]

Background: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England. Methods: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service change in selected settings (general practice, community palliative care teams, care homes, hospital wards, in-patient hospices) with a before-and-after evaluation, and 3) realist evaluation of processes and outcomes across settings. Participants in each setting were supported to identify no more than three Quality Indicators to work on over an eight-month period in 2013/2014. Results: General practices could not be recruited to the study. Care homes were recruited but not retained. Hospital wards were recruited and retained, and using the Quality Indicator (QI) set achieved some of their desired changes. Hospices and community palliative care teams were able to use the QI set to achieve almost all their desired changes, and develop plans for quality improvements. Improvements included: increasing the utility of electronic medical records, writing a manual for end of life care, establishing working relationships with a hospice; standardising information transfer between settings, holding regular multi-disciplinary team meetings, exploration of family carers' views and experiences; developing referral criteria, and improvement of information transfer at patient discharge to home or to hospital. Realist evaluation suggested that: 1) uptake and use of QIs are determined by organisational orientation towards continuous improvement; 2) the perceived value of a QI package was not powerful enough for GPs and care homes to commit to or sustain involvement; 3) the QI set may have been to narrow in focus, or more specialist than generalist; and 4) the greater the settings''top-down' engagement with this change project, the more problematic was its implementation. Conclusions: Whilst use of QIs may facilitate improvements in specialist palliative care services, different QI sets may be needed for generalist care settings. [ABSTRACT FROM AUTHOR]

Background: Palliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients' needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient's future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice. Methods: Two years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis. Results: Six consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients. Conclusion: Although most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them. [ABSTRACT FROM AUTHOR]

Background Pain and neuropathic symptoms impact quality of life of patients with cancer. To obtain more insight in the prevalence, severity, and treatment of neuropathic symptoms in patients with cancer and their interference with daily activities, we conducted a cross-sectional study at the outpatient clinic of a Dutch university hospital. Methods A cross-sectional study among outpatients with cancer. To identify pain, its intensity, quality, and interference with daily activities, the Brief Pain Inventory ( BPI) was used. Neuropathic symptoms were identified with the Douleur Neuropathique ( DN4) interview and pain characteristics with the McGill Pain Questionnaire ( MPQ). Pain medication and adjuvant analgesics were also collected with a prestructured questionnaire. Descriptives, chi-squared tests, t-tests, and a logistic regression analysis were conducted. Results 892 patients completed the questionnaires. Twenty-three percent ( n = 204) reported moderate to severe pain, and 19% ( n = 170) scored positive on neuropathic symptoms ( DN4 ≥ 3). Particularly in patients with a rating on a numeric rating scale ( NRS) < 5, existence of neuropathic symptoms significantly increased interference with daily activities. Of patients with neuropathic symptoms, 8% received adjuvant pain treatment. Receiving curative treatment, using a systemic drug with neurotoxicity, having had an operation, and having had a lymph node dissection independently contributed to having neuropathic symptoms. Conclusions This study shows that over 40% of the patients with moderate to severe pain also have neuropathic symptoms, causing increased interference with daily activities. Most of these patients do not receive adjuvant analgesics. There is a need to improve management of neuropathic symptoms in patients with cancer. [ABSTRACT FROM AUTHOR]

Background Pain assessment and monitoring is a prerequisite for its adequate treatment in patients with cancer. We performed a feasibility study on the use of short message service ( SMS) and interactive voice response ( IVR) to improve pain management in patients with cancer, including terminally ill patients. Methods During 4 weeks, palliative patients received a daily IVR asking to provide their pain score on a numeric rating scale ( NRS) with their mobile phone. If pain was moderate or high, the nurse contacted the patient the same day and, if required, adapted the treatment. Results Thirteen of the 17 invited patients agreed to participate (79%), four died during the study period. IVR/ SMS provides a reliable assessment of the pain intensity, and if required, treatment can be rapidly adapted. All patients were satisfied with the intervention. There were no difficulties for the, mainly older, patients in handling this communication way on pain intensity. The mean pain score decreased from 4.78 to 3.33 ( P = 0.07). The pain scale of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire ( EORTC QLQ-C30) decreased significantly from 56 to 35 ( P = 0.047). Discussion Monitoring and managing pain with IVR/ SMS in patients with cancer at home appeared acceptable and feasible, even in terminally ill patients. The reluctance for actively contacting the professional in case of increased pain intensity is circumvented in this setting. Further research, preferably in a controlled study, is needed to establish the use of this intervention in a larger patient population. [ABSTRACT FROM AUTHOR]

The Dutch clinical practice guideline on the diagnosis and management of pain in patients with cancer was published in 2008 and intensively promoted to healthcare professionals who see patients with cancer. One of the most important recommendations is the systematic registering of the pain and its intensity. To evaluate in which degree this part of the practice guideline is implemented, we analyzed the medical records of patients attending the outpatient oncological clinic in an academic hospital, a large teaching hospital, and 4 smaller peripheral hospitals. None of the participating hospitals assessed pain by a standardized scale. Reference to pain in the medical record happened more frequently in the academic hospital than in the other hospitals. The frequency of recording pain in the medical record in the academic hospital was much higher in this study than the one previously reported, whereas the findings in the other hospitals were comparable. There may be several reasons for the difference in reporting rate of pain in patients with cancer. Our findings indicate that the clinical practice guideline with regard to pain registration is poorly implemented in oncology outpatient clinics. More efforts should be made to generate the awareness for the need of pain registration. [ABSTRACT FROM AUTHOR]

Background: People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care. Methods: Teams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers. Results: Three different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn't even reach consensus when considering persons with dementia eligible for palliative care. Conclusion: The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care. [ABSTRACT FROM AUTHOR]

Background: In the past decades, many new insights and best practices in palliative care, a relatively new field in health care, have been published. However, this knowledge is often not implemented. The aim of this study therefore was to identify strategies to implement improvement activities identified in a research project within daily palliative care practice. Methods: A nominal group technique was used with members of the IMPACT consortium, being international researchers and clinicians in cancer care, dementia care and palliative care. Participants identified and prioritized implementation strategies. Data was analyzed qualitatively using inductive coding. Results: Twenty international clinicians and researchers participated in one of two parallel nominal group sessions. The recommended strategies to implement results from a research project were grouped in five common themes: 1. Dissemination of results e.g. by publishing results tailored to relevant audiences, 2. Identification and dissemination of unique selling points, 3. education e.g. by developing e-learning tools and integrating scientific evidence into core curricula, 4. Stimulation of participation of stakeholders, and 5. consideration of consequences e.g. rewarding services for their implementation successes but not services that fail to implement quality improvement activities. Discussion: The added value of this nominal group study lies in the prioritisation by the experts of strategies to influence the implementation of quality improvement activities in palliative care. Efforts to ensure future use of scientific findings should be built into research projects in order to prevent waste of resources. [ABSTRACT FROM AUTHOR]

Main Objective: Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. Methods: We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Main Results and Their Significance: Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51–2.12) or COPD (OR 1.39; 95% CI: 1.15–1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22–1.40), agitation/delirium (OR 1.57; 95% CI: 1.47–1.68), exhaustion (OR 2.89; 95% CI: 2.61–3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37–2.96) or existential issues (OR 1.55; 95% CI: 1.31–1.83). Conclusion: In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life. [ABSTRACT FROM AUTHOR]