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The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches.

Kris Mooren,1,2,* Eline M Atsma,1,* Eline Duinker,1 Huib AM Kerstjens,3 David Currow,4 Yvonne Engels2 1Department of Pulmonology, Spaarne Gasthuis, Haarlem, the Netherlands; 2Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Center, Nijmegen, the Netherlands; 3Department of Pulmonary Diseases and Tuberculosis, University of Groningen and University Medical Centre Groningen, Groningen, the Netherlands; 4Faculty of Science, Medicine and Health, University of Wollongong, Wollongong, Australia*These authors contributed equally to this workCorrespondence: Kris Mooren, Boerhaavelaan 22, Haarlem, 2035RC, the Netherlands, Tel +3123545969, Email k.mooren@spaarnegasthuis.nlPurpose: Oxygen is commonly prescribed to patients with severe COPD. However, little is known about the perspectives COPD patients, who do not yet use oxygen, have on this treatment.Patients and Methods: A total of 14 oxygen-naïve patients with COPD Gold stages 3– 4 and a high symptom burden participated in semi-structured interviews, in which their beliefs and expectations regarding oxygen therapy were explored. We used conventional content analysis to process our qualitative data.Results: Four main themes were identified: seeking information, expected impact on quality of life, expected social impact and stigma, and last phase of life.Conclusion: The message that home oxygen should be started, was regarded as bad news by most participants. The rationale behind the therapy and the way it is delivered were unknown to most participants. Some participants anticipated smoking-related stigma and social isolation. Misconceptions such as tank explosions, becoming housebound, full dependency on oxygen and an imminent death were common amongst interviewees. Clinicians should be aware of these fears and assumptions when communicating with patients on this subject.Keywords: oxygen, palliative care, breathlessness, social stigma, chronic obstructive pulmo

Johanna MC Broese,1,2 Rianne MJJ van der Kleij,1 Els ML Verschuur,2 Huib AM Kerstjens,3 Ewald M Bronkhorst,4 Niels H Chavannes,1 Yvonne Engels5 1Public Health & Primary Care, Leiden University Medical Center, Leiden, the Netherlands; 2Lung Alliance Netherlands, Amersfoort, the Netherlands; 3Respiratory Medicine & Tuberculosis, University of Groningen and University Medical Center Groningen, Groningen, the Netherlands; 4Health Evidence, Radboud University Medical Center, Nijmegen, the Netherlands; 5Anesthesiology, Pain & Palliative Medicine, Radboud University Medical Center, Nijmegen, the NetherlandsCorrespondence: Johanna MC Broese, Department of Public Health and Primary Care, Leiden University Medical Centre, Post Zone V0-P, Postbox 9600, Leiden, 2300 RC, the Netherlands, Email j.m.c.broese@lumc.nlBackground: Difficulty predicting prognosis is a major barrier to timely palliative care provision for patients with COPD. The ProPal-COPD tool, combining six clinical indicators and the Surprise Question (SQ), aims to predict 1-year mortality as a proxy for palliative care needs. It appeared to be a promising tool for healthcare providers to identify patients with COPD who could benefit from palliative care.Objective: To externally validate the ProPal-COPD tool and to assess user experiences.Methods: Patients admitted with an acute exacerbation COPD were recruited across 10 hospitals. Demographics, clinical characteristics and survival status were collected. Sensitivity, specificity, positive and negative predictive values of the tool using two cut-off values were calculated. Also, predictive properties of the SQ were calculated. In monitoring meetings and interviews, healthcare providers shared their experiences with the tool. Transcripts were deductively coded using six user experience domains: Acceptability, Satisfaction, Credibility, Usability, User-reported adherence and Perceived impact.Results: A total of 523 patients with COPD were included between

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 a

Johanna MC Broese,1,2 Rianne MJJ van der Kleij,1 Els ML Verschuur,2 Huib AM Kerstjens,3 Yvonne Engels,4 Niels H Chavannes1 1Public Health & Primary Care, Leiden University Medical Center, Leiden, the Netherlands; 2Lung Alliance Netherlands, Amersfoort, the Netherlands; 3Respiratory Medicine & Tuberculosis, University of Groningen and University Medical Center Groningen, Groningen, the Netherlands; 4Anesthesiology, Pain & Palliative Medicine, Radboud University Medical Center, Nijmegen, the NetherlandsCorrespondence: Johanna MC BroesePublic Health and Primary Care, Leiden University Medical Centre, Post Zone V0-P, Postbox 9600, Leiden, 2300 RC, the NetherlandsEmail j.m.c.broese@lumc.nlIntroduction: Patients with advanced chronic obstructive pulmonary disease (COPD) experience significant symptom burden, leading to poor quality of life. Although guidelines recommend palliative care for these patients, this is not widely implemented and prevents them from receiving optimal care.Objective: A national survey was performed to map the current content and organization of palliative care provision for patients with COPD by pulmonologists and general practitioners (GPs) in the Netherlands.Methods: We developed a survey based on previous studies, guidelines and expert opinion. Dutch pulmonologists and GPs were invited to complete the survey between April and August 2019.Results: 130 pulmonologists (15.3%; covering 76% of pulmonology departments) and 305 GPs (28.6%) responded. Median numbers of patients with COPD in the palliative phase treated were respectively 20 and 1.5 per year. 43% of pulmonologists and 9% of GPs reported some formalized agreements regarding palliative care provision. Physicians most often determined the start of palliative care based on clinical expertise or the Surprise Question. 31% of pulmonologists stated that they often or always referred palliative patients with COPD to a specialist palliative care team; a quarter rarely refe