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“我能明白他们的出发点,但当你身处其中……你只想要拿到钱和药。”:解释对明确的医疗资源配给的反应

"I can see where they're coming from, but when you're on the end of it ... you just want to get the money and the drug.": explaining reactions to explicit healthcare rationing.

作者信息

Owen-Smith Amanda, Coast Joanna, Donovan Jenny

机构信息

Department of Social Medicine, University of Bristol, Bristol, United Kingdom.

出版信息

Soc Sci Med. 2009 Jun;68(11):1935-42. doi: 10.1016/j.socscimed.2009.03.024. Epub 2009 Apr 15.

Abstract

The traditional pattern of implicit and unacknowledged rationing in the UK National Health Service (NHS) is beginning to change. The advent of the National Institute for Health and Clinical Excellence (NICE), widespread use of the Internet, and the media interest in healthcare rationing means that patients are increasingly likely to be knowledgeable about their healthcare, and to learn that treatments are not available for financial reasons. However, lack of empirical research in this area means that how patients react to explicit rationing is unknown, and thus its outcomes are largely the matter of conjecture. This paper presents results from a UK qualitative interview study with patients who have experienced rationing associated with morbid obesity or breast cancer care, and related NHS managers and clinicians. In total, 31 patients and 21 healthcare professionals were interviewed, although only 21 patients knew that their treatment had been subject to rationing. Purposive and theoretical sampling methods were used to ensure a diverse sample of patients, and data were analysed using methods of constant comparison. Patients had a choice about whether to accept explicit rationing decisions, protest against them, or pay for private care. However, the accounts of many patients showed there was a gulf between their general views around the necessity of rationing and how they said they would react to such decisions in theory, and how they stated they actually reacted when faced with shortages affecting their own treatment. Among the most important factors affecting how patients reacted to rationing were their sense of entitlement to NHS care, and the attitude of the clinical team providing treatment. The findings suggest that patients need to be provided with sufficient information and support to make an informed decision following the revelation of rationing, and that clinicians need training to assist them in communicating rationing decisions.

摘要

英国国民医疗服务体系(NHS)中传统的隐性且未被承认的医疗资源分配模式正开始发生变化。国家卫生与临床优化研究所(NICE)的出现、互联网的广泛使用以及媒体对医疗资源分配的关注,意味着患者越来越有可能了解自身的医疗保健情况,并知晓某些治疗因经济原因无法提供。然而,该领域缺乏实证研究,这意味着患者对明确的医疗资源分配会作何反应尚不清楚,因此其结果在很大程度上只是推测。本文呈现了一项英国定性访谈研究的结果,该研究的对象是经历过与病态肥胖或乳腺癌治疗相关的医疗资源分配的患者,以及相关的NHS管理人员和临床医生。总共访谈了31名患者和21名医疗保健专业人员,不过只有21名患者知道他们的治疗受到了医疗资源分配的限制。采用了立意抽样和理论抽样方法以确保患者样本具有多样性,并运用持续比较法对数据进行了分析。患者可以选择接受明确的医疗资源分配决定、对此提出抗议或者支付私立医疗费用。然而,许多患者的叙述表明,在他们对医疗资源分配必要性的总体看法与他们理论上表示会对这类决定作出的反应,以及他们声称在面对影响自身治疗的短缺情况时实际的反应之间,存在着差距。影响患者对医疗资源分配反应的最重要因素包括他们对NHS医疗服务的应享权利感,以及提供治疗的临床团队的态度。研究结果表明,在告知患者医疗资源分配情况后,需要为他们提供足够的信息和支持,以便他们做出明智的决定,并且临床医生需要接受培训,以帮助他们传达医疗资源分配的决定。

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