ORCID Profile
0000-0001-8149-1806
Current Organisations
King's College London
,
University of Coimbra
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Publisher: SAGE Publications
Date: 23-05-2013
Abstract: 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. We examined variations in people’s priorities for treatment, care and information across seven European countries. Telephone survey of a random s le 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. Members of the general public aged ≥16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. In total, 9344 in iduals 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 alliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities. 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.
Publisher: Springer Science and Business Media LLC
Date: 08-03-2013
Publisher: Wiley
Date: 03-2013
DOI: 10.1002/PON.3283
Abstract: With increasing European cancer deaths, clinicians must manage information regarding poor prognosis. This study aimed to determine European citizens' preferences, within a scenario of serious illness such as cancer with less than a year to live, for information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available, to measure variations between countries and to identify factors associated with preferences. A population-based cross-national telephone survey using random digit dialling in seven countries was conducted. Among 9344 respondents, data revealed an international preference (73.9%) to always be informed in the scenario of having a serious illness such as cancer with less than a year to live. This varied from 67.6% in Italy to 80.7% in Flanders. A minority (21.1%) did not want such information unless they ask, or at all. People younger than 70 years (OR 0.72, 95% CI 0.62-0.83, p < 0.001), men (OR 1.23, 95% CI 1.10-1.37, p < 0.001), those with experience of illness (OR = 1.20. 95% CI 1.01-1.43, p < 0.05) and with more education (OR = 1.20, 95% CI 1.09-1.32, p < 0.001) were more likely to want to know of limited time left. The models confirmed the influence of four factors in more than one country (age, gender, education and most concerning problem) and added 11 country-specific factors to which national policies and clinical practice should respond. These findings confirm a majority public preference to be informed in a scenario of poor prognosis. Policy clinical practice should facilitate elucidation and delivery of preferences. Evidence for effective communication skills-building interventions for clinicians is required.
Publisher: SAGE Publications
Date: 20-02-2013
Abstract: 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. To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors. A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain. Across countries, 74% preferred self-involvement when capable 44% preferred self-involvement when incapable through, for ex le, 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). 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.
Publisher: Springer Science and Business Media LLC
Date: 08-08-2015
Publisher: BMJ
Date: 13-12-2011
DOI: 10.1136/BMJSPCARE-2011-000112
Abstract: There is a great need for end-of-life care in Africa due to the high incidence of life-threatening illness. However, little is known about the views of the African public on end-of-life care. Therefore, the authors piloted a street survey in Nairobi (Kenya), where adult pedestrians were randomly interviewed about local preferences and priorities for end-of-life care. Two of 19 people consented but later withdrew, one because of religious beliefs and one because of the sensitive nature of the subject. Interviews took approximately 15 min. Interviewers' field notes revealed no major problems with content, but identified tribal and ethnic origin as a sensitive topic, and stressed the usefulness of the presence of a 'buddy' for the safety of the interviewer. One participant found it upsetting to talk about the topic and did not want to be informed about a terminal illness. The 16 remaining participants said the interview was not distressing and answered all questions. All 17 had experienced the death of a close relative in the last 5 years. Methodological and implementation lessons have been learnt and the results of the pilot suggest street surveying is a feasible and acceptable method to examine public opinion on end-of-life care in Africa, provided people are able to freely decline to respond and safety measures are in place for interviewer. This novel pilot offers a new opportunity for health research in Africa.
Publisher: Springer Science and Business Media LLC
Date: 15-02-2014
Publisher: Springer Science and Business Media LLC
Date: 23-10-2014
Publisher: Elsevier BV
Date: 07-2019
Publisher: Oxford University Press (OUP)
Date: 13-03-2013
Publisher: Elsevier BV
Date: 08-2012
Abstract: 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 s le of in iduals 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.
Publisher: Mary Ann Liebert Inc
Date: 03-2011
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Barbara Gomes.