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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: 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]

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]

A correction is presented to the article "Oncologist responses to advanced cancer patients' lived illness experiences and efects: an applied conversation analysis study."