Priorities for treatment, care and information if faced with serious illness:a comparative population-based survey in seven European countries

Background: Health-care costs are growing, with little population-based data about people's priorities for end-of-life care, to guide service development and aid discussions. Aim: We examined variations in people's priorities for treatment, care and information across seven European countries. Design: Telephone survey of a random sample of households; we asked respondents their priorities if faced with a serious illness, like cancer, with limited time to live' and used multivariable logistic regressions to identify associated factors. Setting/participants: Members of the general public aged 16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Results: In total, 9344 individuals were interviewed. Most people chose improve quality of life for the time they had left', ranging from 57% (95% confidence interval: 55%-60%, Italy) to 81% (95% confidence interval: 79%-83%, Spain). Only 2% (95% confidence interval: 1%-3%, England) to 6% (95% confidence interval: 4%-7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%-17%, Spain) to 40% (95% confidence interval: 37%-43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities. Conclusions: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer

Learning from the public:citizens describe the need to improve end-of-life care access, provision and recognition across Europe

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within-and between-country variance; establish standards for training, education and service delivery

'Burden to others' as a public concern in advanced cancer:a comparative survey in seven European countries

Background: Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this. Methods: Telephone survey with 9,344 individuals aged >= 16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As 'burden to others' showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression. Results: Overall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80). Conclusions: When imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis

Stress-induced changes in healthy mice do not reflect functional dyspepsia pathophysiology

status: publishe