'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

To be involved or not to be involved:A survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe

Background: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand.Aim: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors.Design: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain.Results: Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93–2.77), (odds ratio = 1.33–1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14–1.41), (odds ratio = 1.30, 95% confidence interval = 1.20–1.42)); younger-middle age ((30–59 years: odds ratio = 1.24–1.40), (50–59 years: odds ratio = 1.23, 95% confidence interval = 1.04–1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49–1.58), (odds ratio = 1.35–1.53)). Those with increased financial hardship (odds ratio = 0.64–0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60–0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54–0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18–1.53).Conclusions: Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy