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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: 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: 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 Patients with advanced cancer experience problems and unmet needs. However, we assume that patients with advanced cancer will have more problems and unmet needs in a country with a lower economic status than in an economically stronger country. We studied whether patients with advanced cancer in Indonesia have more problems and unmet needs than a similar group of patients in the Netherlands. Methods We performed a cross-sectional survey. We compared the data for 180 Indonesian and 94 Dutch patients relating to 24 items of the Problems and Needs in Palliative Care-short version questionnaire. We performed descriptive and χ2 analysis with Bonferroni correction. Results The prevalence of most physical problems, including pain, was similar in the 2 groups. In Indonesia, financial problems were the most common: 70 to 80% vs. 30 to 42% in the Netherlands. In Indonesia, 25 to 50% of the patients reported psychological and autonomy problems versus 55 to 86% in the Netherlands. The Indonesian group had many more unmet needs for each problem (> 54%) than the Dutch group (< 35%). Conclusion Apparently, economic and cultural differences hardly influence physical problems. Nonetheless, fewer Indonesian patients reported psychological and autonomy problems than Dutch patients. This difference contradicts our hypothesis. However, we found more unmet needs for professional attention in Indonesia than in the Netherlands, which is compatible with our hypothesis. These simple comparative data provide interesting insights into problems and unmet needs and give rise to our new hypothesis about cultural influences. This hypothesis should be studied in more depth. [ABSTRACT FROM AUTHOR]

Background Systematic pain registration and assessment with a visual analog scale ( VAS) or numeric rating scale ( NRS) at each visit are key recommendations in one of the most recent guidelines on cancer pain management. It is unclear whether this recommendation is applied. Objectives The aim was to explore registration of pain in medical records of patients visiting the medical oncology outpatient clinic. Methods In a multicenter study in six Dutch hospitals, data were extracted from medical records of 380 outpatients with cancer. Data of the first three visits at the outpatient clinic were studied. Descriptive statistics were conducted. Results In 23% of all 987 visits at the outpatient clinic, pain or absence of pain was registered, and in an additional 15%, a nonspecific symptom description was given. Regarding all other visits, (62%) pain or absence of pain was not documented at all. Pain measurement using a VAS or NRS was documented in only one visit. Pain was more often registered in medical records of patients with metastasis, as well as in those of patients with urogenital tumors. Conclusion Pain in medical oncology outpatients is not systematically registered in their medical records. With one exception, pain was not registered with a VAS or NRS. Yet, registration and assessment of pain to monitor pain are essential to evaluate and adapt pain treatment over time. Pain registration has not improved since 2001 and therefore implementing the recommendations regarding systematic monitoring of pain is needed. [ABSTRACT FROM AUTHOR]

Objective: Our aim was to investigate the feasibility of completing an exercise program in patients with advanced cancer and to obtain preliminary data of its impact on physical and quality of life (QoL) outcomes. Methods: We conducted a nonrandomized pilot study. Participants were 26 palliative care patients with advanced cancer (mean age=54.5 years; standard deviation [SD] 8.9 years) of the outpatient clinic of the medical oncology and the urology departments of a medical center in The Netherlands. Participants followed an individually graded group exercise program, consisting of resistance training and aerobic exercise, twice a week during 6 weeks. Feasibility of the training program, muscle strength, aerobic fitness, body composition, QoL, fatigue, and physical role, social, and activities of daily living (ADL) functioning were assessed at baseline and immediately after the intervention. Results: Dropout rate during the training period was 35% due to disease progression. After the training period, based on intention to treat analysis, muscle strength and aerobic functional fitness had increased significantly ( p≤0.01). A significant decrease in fat percentage ( p≤0.02) was observed. QoL had increased significantly ( p≤0.02), as well as social ( p≤0.04), physical role ( p≤0.01), and ADL functioning ( p≤0.05). Fatigue decreased significantly on the Checklist Individual Strength (CIS) and RAND-36 questionnaires ( p≤0.02), however not on the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 ( p=0.48). No change in physical functioning was observed with the EORTC QLQ-C30 and RAND-36 (respectively, p=0.33 and p=0.09). Conclusions: These preliminary results show that physical exercise in patients with advanced cancer is feasible. A significant impact was observed on physical and QoL outcomes. These findings need to be confirmed with a larger-scale, randomized controlled trial. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care. A single-blinded cluster randomized controlled trial. In 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice. Intervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering. 38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P =.002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P =.003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P <.001) preferences per person with dementia than control group GPs. Our educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown. [ABSTRACT FROM AUTHOR]