Higginson Irene J, Gomes Barbara, Calanzani Natalia, Gao Wei, Bausewein Claudia, Daveson Barbara A, Deliens Luc, Ferreira Pedro L, Toscani Franco, Gysels Marjolein, Ceulemans Lucas, Simon Steffen T, Cohen Joachim, Harding Richard
1King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK.
Palliat Med. 2014 Feb;28(2):101-10. doi: 10.1177/0269216313488989. Epub 2013 May 23.
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 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.
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.
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.
医疗保健成本不断增长，而基于人群的临终关怀优先事项数据却很少，难以指导服务发展并促进相关讨论。
我们研究了七个欧洲国家民众在治疗、护理和信息方面的优先事项差异。
对随机抽取的家庭进行电话调查；询问受访者如果“面临像癌症这样的严重疾病且生命时日无多”时的优先事项，并使用多变量逻辑回归来确定相关因素。
背景/参与者：居住在英格兰、佛兰德、德国、意大利、荷兰、葡萄牙和西班牙的16岁及以上普通民众。
总共采访了9344人。大多数人选择“在剩余时间里提高生活质量”，比例从57%（95%置信区间：55%-60%，意大利）到81%（95%置信区间：79%-83%，西班牙）不等。只有2%（95%置信区间：1%-3%，英格兰）到6%（95%置信区间：4%-7%，佛兰德）的人表示延长生命最为重要，15%（95%置信区间：13%-17%，西班牙）到40%（95%置信区间：37%-43%，意大利）的人表示质量和延长同样重要。在所有国家，将生活质量列为优先事项与高等教育相关（优势比从佛兰德的1.3到意大利的7.9）、有护理或丧亲经历（英格兰、德国、葡萄牙）、将疼痛/症状控制置于积极态度之上以及更倾向于在临终关怀/姑息治疗病房离世。那些将延长生命列为优先事项的人在所有群体中家庭离世偏好最高。健康状况并未影响优先事项。
在所有国家，无论健康状况如何，只有少数人将延长生命列为优先事项。对于癌症等严重疾病，治疗和护理需要重新定位，患者教育和姑息治疗应成为主流。
