The Autonomous Patient: Ending Paternalism in Medical Care
The Autonomous Patient: Ending Paternalism in Medical Care
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发表时间：
2002-09
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通讯作者：
A. Coulter
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作者：
A. Coulter
安吉拉·库尔特 (Angela Coulter) 是一位杰出的医学社会学家和流行病学家，她的观点和观察受到制定政府卫生政策和实现所谓的 NHS“现代化”业务的人士的高度重视。这本专着认为，她认为家长式作风是医疗保健的一个决定性特征，“它已经过时了”，二十一世纪的病人比以往任何时候都更加了解情况和受过教育，他们将决心更多地自力更生，而不是被动和依赖；迈向自治的重大举措。不用说，她的主要目标是医生和医学界，据称他们不愿意改变，从而阻碍了被认为是必要的发展。她的变革主张深受肯尼迪报告的影响，该报告是在布里斯托尔皇家医院对小儿心脏手术进行调查之后进行的。重点是参与其中的外科医生在知情同意方面的专业失败、在事情未按计划进行时需要开放以及愿意倾听患者及其护理人员的意见等方面的充分沟通。然而，人们对该系统以及卫生部及其历任政治大师在 15 年期间未能提供适当设施和资源的关注较少。尽管自八十年代末皇家内科医学院和皇家外科医学院院长著名地访问唐宁街会见撒切尔夫人以来，皇家医学院、专业协会和个人一直在不断劝告，但仍然如此。库尔特博士指出，尽管支出高于通货膨胀且治疗效果迅速提高，但卫生系统仍面临信心危机和公众日益悲观的情绪。她认为，为了解决此类失败，需要彻底改变文化，并重大改变临床医生看待自己角色的方式。自从阅读了她非常清晰且写得很好的作品以来，我自己的观察和“研究”并不能完全证实这一点。我听到了对术后诊所和轻伤中心的全科医生、外科医生、内科医生、护士和执业护士的高度赞扬和满意，但也听到了对系统延误、手术取消、设备故障、病房肮脏、设施陈旧等问题的巨大批评。患者及其亲属不禁注意到官僚和管理者队伍的不断壮大，他们认为这些人浪费资源，而且几乎没有做任何有益的事情。家长作风并不是最让患者恼火的，事实上，库尔特博士批评的更传统的家长作风已经发生了巨大的转变——但患者确实想要了解和理解所有可用的选择，并发表自己的意见。他们需要但常常得不到的是足够的时间与他们的全科医生、医院医生、高级或初级医生或护士在一起。最后，基于信任，人们普遍认为全科医生、内科医生或外科医生是“专家”，请他或她推荐他或她认为最好的行动方案？给予患者更多的自主权——是的，但不应该过度，而且这既不是普遍要求的，也是不合适的。库尔特博士承认这一点。有一些有趣的统计数据。现在大家都知道，迄今为止，英国在医疗保健方面的支出比大多数其他发达国家要少得多。 （1998 年，英国的人均支出约为 1,500 美元，而德国的人均支出为 2,300 美元——这一巨大差异背后隐藏着这里未提及的另一个巨大差异。这是英国内部支出的巨大差异。苏格兰的人均支出比英格兰多 20% 以上——而且英格兰的人均支出也存在很大差异。事实上，苏格兰的支出可能已经远远超过欧盟平均水平。）库尔特博士提到了媒体的影响。与预期不同：明显的坏消息比好消息更有可能登上头版，而这种扭曲在很大程度上让人感觉 NHS 正处于比实际情况更严重的危机中。比较英国、美国和某些欧洲国家患者满意度的数据引起了严重关注。 1996年，40%的英国患者对所提供的整体医疗服务表示不满意，而丹麦这一比例仅为5.7%。在最近一项针对医院患者的调查中，30% 的患者发现医生和护士的供应情况不佳，而欧洲大陆的一些数字要低得多。 （有趣的是，我自己对我们自己的大型私立医院的患者对医生的满意度进行了调查，结果显示患者满意度极高，“不满意率”在 0.5% 到 0% 之间。） 问责问题的处理方式有些模糊。对谁负责？好吧，那些付钱的人。在这个国家，总的来说，纳税人是纳税人——因此出现了大量的新绩效指标、星级评定、排名表等，所有这些都需要由卫生部直接或间接支付的个人团队来收集、整理、评估和解释所获得的大量数据。这种方法会提高还是削弱绩效或信心？正如奥诺拉·奥尼尔 (Onora O’Neill) 在 2001 年里斯讲座中所说，更多地信任专业人士不是更好吗？与英国相反，法国、德国和其他一些欧洲国家的责任直接针对患者、他们的护理人员或他们的家人，并采用直接支付系统（或多或少地报销）确保真正的选择和控制。事实上，我们现在听到了通过代金券系统为人们提供更多控制和选择的想法——无论是在医疗保健还是教育领域——看看它如何发展将会很有趣。尽管如此，2003年英国患者及其家人的主要抱怨是初级和医院护理的咨询时间不够，而且缺乏及时、可靠的服务。这是一本写得非常出色的专着，共 120 页，充满了数据、想法和论点，为健康提供了良好的基础。
Angela Coulter is a distinguished medical sociologist and epidemiologist whose opinions and observations are valued highly by those in the business of formulating governmental health policy and of bringing about the so-called ‘modernisation’ of the NHS. This monograph argues that paternalism, which she regards as a defining characteristic of medical care, ‘has had its day’ and that the patient of the twenty-first century, more informed and educated than ever before, will be determined to exert more self-reliance than passivity and dependence; a major move towards autonomy. Her principal target is, needless to say, the doctor and the medical profession who are allegedly reluctant to change and are thereby holding up what are perceived to be the required developments. Her case for change is heavily influenced by the Kennedy report that followed the Bristol Royal Infirmary enquiry into paediatric cardiac surgery. Emphasis is given to the professional failing of the surgeons involved to communicate adequately in regard to informed consent, the need for openness when things do not go to plan, and the willingness to listen to the views of patients and their carers. Less attention is, however, paid to the system, and the failure of the Department of Health and its successive political masters over a 15-year period to provide proper facilities and resources. This was despite the continuous exhortation of Royal medical colleges, specialty associations and individuals ever since the famous visit to Downing Street to see Mrs Thatcher in the late Eighties by the presidents of both the Royal College of Physicians and the Royal College of Surgeons. Dr Coulter refers to a crisis in confidence and growing public pessimism with health systems despite above-inflation expenditure and rapidly improving therapeutic efficacy. She argues that in order to solve such failings a total culture change is needed, with a major alteration in the way clinicians see their roles. My own observations and ‘research’ since reading her very clear and well-written work do not entirely bear this out. I hear much praise for and satisfaction with the general practitioners, surgeons, physicians, nurses and nurse practitioners who man post-operative clinics and minor trauma centres, but immense criticism of the system’s delays, cancelled operations, breakdowns in apparatus, dirty wards, cramped out-of-date facilities and so on. And patients and their relatives cannot help but notice the increasing army of bureaucrats and managers, whom they perceive as wasteful and doing little that is beneficial. Paternalism is not what irritates patients most, indeed there has already been a huge swing away from the more traditional paternalism that Dr Coulter criticises – but patients do certainly and rightly want to know and understand all options available, and to have their say. What they need and so often do not get is sufficient time with their general practitioner, their hospital doctor, senior or junior, or their nurse. In the end there is a prevailing sentiment, based on trust, that the general practitioner, physician or surgeon is the ‘expert’, and would he or she please recommend what he or she believes to be the best course of action? More autonomy for patients – yes, but it should not be overdone and it is not either universally asked for or appropriate. Dr Coulter concedes this. There are some interesting statistics. Everybody now knows that the UK, until the present day, has spent significantly less on health care than most other developed countries. (In 1998 the UK’s spend was approximately $1,500 per head compared with Germany’s $2,300 – a huge discrepancy which hides another huge discrepancy not mentioned here. This is the wide range of spend within the UK. Scotland’s funding per head is over 20% more than England’s – and there is a wide range within England as well. Indeed, Scotland could already be spending well over the EU average.) Dr Coulter refers to the influence the media have on expectations: apparent bad news is more likely to make the front pages than good news, and this distortion contributes significantly to the sense that the NHS is in a greater crisis than it is. Data comparing patient satisfaction in the UK, the USA and certain European countries raises serious concern. In 1996, 40% of UK patients expressed dissatisfaction with the overall medical service provided, compared with only 5.7% in Denmark. In a recent survey of hospital patients, 30% found the availability of doctors and nurses not to be good compared with some much lower figures on the Continent. (Interestingly, my own enquiries into patient satisfaction with doctors in our own major private hospitals show it to be extremely high, with a ‘dissatisfaction rate’ of between 0.5% and 0%.) The issue of accountability is dealt with in a somewhat blurred fashion. Accountable to whom? Well, those who pay. In this country this, by and large, is the taxpayer – hence the new plethora of performance indicators, star ratings, league tables and so on, all requiring teams of individuals, paid either directly or indirectly by the Department of Health, to collect, collate, assess and interpret the mass of data obtained. Will such an approach enhance or undermine performance or confidence? Might it not be better to put more trust in professionals, as Onora O’Neill argued in her 2001 Reith lectures? Accountability in France, Germany and a number of other European countries is, in contrast to the UK, direct to the patient, their carer or their family, with a system of direct payment (to be reimbursed to a greater or lesser degree) ensuring real choice and control. Indeed, we are now hearing the idea of providing people with more control and choice by a system of vouchers – both in health care and education – and it will be interesting to see how this develops. Still, in 2003 the principal complaint British patients and their families have is to do with the time made available for consultation in primary and hospital care and the lack of prompt, reliable availability. This is an excellently written monograph, 120 pages crammed with data, ideas and argument providing a splendid basis for healthy