Breathlessness is a common and distressing symptom, which increases in many diseases as they progress and is difficult to manage. We assessed the effectiveness of early palliative care integrated with respiratory services for patients with advanced disease and refractory breathlessness. In this single-blind randomised trial, we enrolled consecutive adults with refractory breathlessness and advanced disease from three large teaching hospitals and via general practitioners in South London. We randomly allocated (1:1) patients to receive either a breathlessness support service or usual care. Randomisation was computer generated centrally by the independent Clinical Trials Unit in a 1:1 ratio, by minimisation to balance four potential confounders: cancer versus non-cancer, breathlessness severity, presence of an informal caregiver, and ethnicity. The breathlessness support service was a short-term, single point of access service integrating palliative care, respiratory medicine, physiotherapy, and occupational therapy. Research interviewers were masked as to which patients were in the treatment group. Our primary outcome was patient-reported breathlessness mastery, a quality of life domain in the Chronic Respiratory Disease Questionnaire, at 6 weeks. All analyses were by intention to treat. Survival was a safety endpoint. This trial is registered with ClinicalTrials.gov, number NCT01165034. Between Oct 22, 2010 and Sept 28, 2012, 105 consenting patients were randomly assigned (53 to breathlessness support service and 52 to usual care). 83 of 105 (78%) patients completed the assessment at week 6. Mastery in the breathlessness support service group improved compared with the control (mean difference 0·58, 95% CI 0·01-1·15, p=0·048; effect size 0·44). Sensitivity analysis found similar results. Survival rate from randomisation to 6 months was better in the breathlessness support service group than in the control group (50 of 53 [94%] vs 39 of 52 [75%]) and in overall survival (generalised Wilcoxon 3·90, p=0·048). Survival differences were significant for patients with chronic obstructive pulmonary disease and interstitial lung disease but not cancer. The breathlessness support service improved breathlessness mastery. Our findings provide robust evidence to support the early integration of palliative care for patients with diseases other than cancer and breathlessness as well as those with cancer. The improvement in survival requires further investigation. UK National Institute for Health Research (NIHR) and Cicely Saunders International.

Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Understanding the need for palliative care is essential in planning services. To refine existing methods of estimating population-based need for palliative care and to compare these methods to better inform their use. (1) Refinement of existing population-based methods, based on the views of an expert panel, and (2) application/comparison of existing and refined approaches in an example dataset. Existing methods vary in approach and in data sources. (a) Higginson used cause of death/symptom prevalence, and using pain prevalence, estimates that 60.28% (95% confidence interval = 60.20%–60.36%) of all deaths need palliative care, (b) Rosenwax used the International Statistical Classification of Diseases and Related Health Problems–10th Revision (ICD-10) causes of death/hospital-use data, and estimates that 37.01% (95% confidence interval = 36.94%–37.07%) to 96.61% (95% confidence interval = 96.58%–96.64%) of deaths need palliative care, and (c) Gómez-Batiste used percentage of deaths plus chronic disease data, and estimates that 75% of deaths need palliative care. All deaths in England, January 2006–December 2008, using linked mortality and hospital episode data. Expert panel review identified changing practice (e.g. extension of palliative care to more non-cancer conditions), changing patterns of hospital/home care and multiple, rather than single, causes of death as important. We therefore refined methods (using updated ICD-10 causes of death, underlying/contributory causes, and hospital use) to estimate a minimum of 63.03% (95% confidence interval = 62.95%–63.11%) of all deaths needing palliative care, with lower and upper mid-range estimates between 69.10% (95% confidence interval = 69.02%–69.17%) and 81.87% (95% confidence interval = 81.81%–81.93%). Death registration data using both underlying and contributory causes can give reliable estimates of the population-based need for palliative care, without needing symptom or hospital activity data. In high-income countries, 69%–82% of those who die need palliative care.

Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics.

Background: Little is known about symptom burden and palliative care needs of breathless patients with advanced cancer and chronic obstructive pulmonary disease (COPD). Objectives: We aimed to describe and compare symptoms and needs in these two groups in relation to survival. Methods: Cross-sectional study of breathless patients with COPD III/IV or advanced cancer. Data were collected in an interview using the Memorial Symptom Assessment Scale short form (MSAS-SF), the modified Borg Scale, the Hospital Anxiety and Depression Scale, and the Palliative Care Outcome Scale (POS). Follow-up information was collected on survival. Results: Forty-nine patients with cancer and 60 patients with COPD were recruited. Both groups had similar demographics and a similar high symptom burden: median number of 14 symptoms; most prevalent symptoms in both groups besides breathlessness were drowsiness, lack of energy, cough; median global symptom distress on MSAS-Global Distress Index MSAS-GDI 1.6 in cancer and 1.4 in COPD. HADS depression scores were higher than HADS anxiety scores. Palliative care needs were also similar in both groups. Median survival was 107 days in patients with cancer and 589 days in patients with COPD. Conclusions: Symptom burden and palliative care needs of breathless patients with severe COPD are considerable and as high as among patients with advanced primary and secondary lung cancer although patients with COPD have a longer survival.