In a predominantly biomedical healthcare model focused on cure, providing optimal, person-centred palliative care is challenging. The general public, patients, and healthcare professionals are often unaware of palliative care’s benefits. Poor interdisciplinary teamwork and limited communication combined with a lack of early identification of patients with palliative care needs contribute to sub-optimal palliative care provision. We aimed to develop a national quality framework to improve availability and access to high-quality palliative care in a mixed generalist-specialist palliative care model. We hypothesised that a whole-sector approach and a modified Delphi technique would be suitable to reach this aim. Analogous to the international AGREE guideline criteria and employing a whole-sector approach, an expert panel comprising mandated representatives for patients and their families, various healthcare associations, and health insurers answered the main question: ‘What are the elements defining high-quality palliative care in the Netherlands?’. For constructing the quality framework, a bottleneck analysis of palliative care provision and a literature review were conducted. Six core documents were used in a modified Delphi technique to build the framework with the expert panel, while stakeholder organisations were involved and informed in round-table discussions. In the entire process, preparing and building relationships took one year and surveying, convening, discussing content, consulting peers, and obtaining final consent from all stakeholders took 18 months. A quality framework, including a glossary of terms, endorsed by organisations representing patients and their families, general practitioners, elderly care physicians, medical specialists, nurses, social workers, psychologists, spiritual caregivers, and health insurers was developed and annexed with a summary for patients and families. We successfully developed a national consensus-based patient-centred quality framework for high-quality palliative care in a mixed generalist-specialist palliative care model. A whole-sector approach and a modified Delphi technique are feasible structures to achieve this aim. The process we reported may guide other countries in their initiatives to enhance palliative care.

Background Individuals’ willingness to engage in advance care planning is influenced by factors such as culture and religious beliefs. While most studies on advance care planning in Asia have been performed in high-income countries, Indonesia is a lower-middle-income country, with a majority of strongly collectivist and religiously devout inhabitants. We studied the perspectives of Indonesian patients with cancer and family caregivers regarding advance care planning by first exploring their experiences with medical information-disclosure, decision-making, and advance care planning and how these experiences influence their perspectives on advance care planning. Methods We conducted semi-structured interviews among 16 patients with cancer and 15 family caregivers in a national cancer center in Jakarta and a tertiary academic general hospital in Yogyakarta. We performed an inductive thematic analysis using open, axial, and selective coding. The rigor of the study was enhanced by reflective journaling, dual coding, and investigator triangulation. Results Twenty-six of 31 participants were younger than 60 years old, 20 were Muslim and Javanese, and 17 were college or university graduates. Four major themes emerged as important in advance care planning: (1) participants’ perceptions on the importance or harmfulness of cancer-related information, (2) the importance of communicating bad news sensitively (through empathetic, implicit, and mediated communication), (3) participants’ motives for participating in medical decision-making (decision-making seen as patients’ right or responsibility, or patients’ state of dependency on others), and (4) the complexities of future planning (e.g., due to its irrelevance to participants’ religious beliefs and/or their difficulties in seeing the relevance of future planning). Conclusions Culturally sensitive approaches to advance care planning in Indonesia should address the importance of facilitating open communication between patients and their families, and the various perspectives on information provision, bad news communication, and decision-making. Advance care planning should focus on the exploration of patients’ values, rather than drafting treatment plans in advance.

When patients die relatives and healthcare professionals may appreciate the quality of the dying phase differently, but comparisons are rare. In a cross-sectional study (June 2009–July 2012) the experiences of bereaved relatives, physicians, and nurses concerning the quality of dying in a large Dutch university hospital were compared, and the relation to communication was explored. Measurements were concordance on the quality of dying (QOD) (0–10 scale), awareness of impending death, and end-of-life communication.Results. Data on all three perspectives were available for 200 patients. Concordance in general was poor. Relatives’ scores for QOD (median 7; IQR 5–8) were lower than physicians and nurses’ (both median 7; IQR 6–8) (P=0.002). 48% of the relatives, 77% of the physicians, and 73% of the nurses had been aware of impending death. Physicians more often reported to have informed patients and relatives of end-of-life issues than relatives reported. When both physicians and relatives reported about such discussion, relatives’ awareness of impending death and presence at the patient’s deathbed were more likely.Conclusion. Relatives, physicians, and nurses seem to have their “own truth” about the dying phase. Professionals should put more emphasis on the collaboration with relatives and on verification of relative’s understanding.

Background Better insight in patients’ prognosis can help physicians to timely initiate advance care planning (ACP) discussions with patients with chronic obstructive pulmonary disease (COPD). We aimed to identify predictors of mortality. Methods We systematically searched databases Embase, PubMed, MEDLINE, Web of Science, and Cochrane Central in April 2020. Papers reporting on predictors or prognostic models for mortality at 3 months and up to 24 months were assessed on risk-of-bias. We performed a meta-analysis with a fixed or random-effects model, and evaluated the discriminative ability of multivariable prognostic models. Results We included 42 studies (49–418,251 patients); 18 studies were included in the meta-analysis. Significant predictors of mortality within 3–24 months in the random-effects model were: previous hospitalization for acute exacerbation (hazard ratio [HR] 1.97; 95% confidence interval [CI] 1.32–2.95), hospital readmission within 30 days (HR 5.01; 95% CI 2.16–11.63), cardiovascular comorbidity (HR 1.89; 95% CI 1.25–2.87), age (HR 1.48; 95% CI 1.38–1.59), male sex (HR 1.68; 95% CI 1.38–1.59), and long-term oxygen therapy (HR 1.74; 95% CI 1.10–2.73). Nineteen previously developed multicomponent prognostic models, as examined in 11 studies, mostly had moderate discriminate ability. Conclusion Identified predictors of mortality may aid physicians in selecting COPD patients who may benefit from ACP. However, better discriminative ability of prognostic models or development of a new prognostic model is needed for further large-scale implementation. Registration: PROSPERO (CRD42016038494), https://www.crd.york.ac.uk/prospero/.