Terry W, Olson L G, Ravenscroft P, Wilss L, Boulton-Lewis G
Faculty of Health, University of Newcastle, Newcastle, New South Wales, Australia.
Intern Med J. 2006 Jul;36(7):406-13. doi: 10.1111/j.1445-5994.2006.01078.x.
This project was conducted to investigate whether the concerns that researchers have about including terminally ill patients in research were shared by a sample of terminally ill patients.
Twenty-two patients admitted to a hospice participated in semistructured interviews; 18 patients had advanced malignant disease and 13 were women; their ages ranged from 28 to 93 years. The interview transcripts were analysed for common themes and particular attention was paid to the reasons patients gave for their views.
All the patients wanted to participate in research. Patients advanced one or more of several reasons for participation, the commonest being altruism, enhancement of a sense of personal value, the assertion of persisting autonomy and the value they placed on a commitment by doctors to optimising care by research. They rejected the view that their consent might be non-autonomous and put forward consistent views about what they considered relevant to consent.
Our patients did not share the concerns of ethicists about the difficulties and hazards of research with the terminally ill. These patients' views are not reflected in the professional consensus.
开展本项目旨在调查临终患者样本是否也有研究人员在将临终患者纳入研究时所存在的顾虑。
22名入住临终关怀机构的患者参与了半结构化访谈；18名患者患有晚期恶性疾病，13名是女性；年龄在28岁至93岁之间。对访谈记录进行分析以找出共同主题，并特别关注患者给出观点的原因。
所有患者都希望参与研究。患者提出了一个或多个参与研究的理由，最常见的是利他主义、增强个人价值感、坚持自主以及他们对医生通过研究优化护理承诺的重视。他们拒绝认为自己的同意可能是非自主的观点，并就他们认为与同意相关的内容提出了一致看法。
我们的患者没有像伦理学家那样担心对临终患者进行研究的困难和风险。这些患者的观点未体现在专业共识中。
