患者可以决定自己的医疗方案吗?

发布于 2021-10-13 05:28

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患者可以决定自己的医疗方案吗？

当可以接种新冠病毒疫苗时，患有过敏症的杰基（化名，实情）不确定是否接种疫苗。她问她的医生。他的回答是：“做你认为正确的事。”当然，你自己的偏好应该指导你的健康选择。除此之外，在这种情况下，杰基除了做正确的事情外没有其他偏好，只要她知道那是什么。
将决定权交给她可以理解为将她视为“医疗保健消费者”，这一术语在全球学术研究宝库谷歌学者（Google Scholar）上呈指数级增长，成为一个新的、更具权威性的“患者”术语。自1847年以来，我们已经走过了漫长的道路，当美国医学会的道德准则以当时家长式的方式规定，“患者对医生处方的服从应该是及时和默认的。他不应该允许自己对处方的适用性发表粗俗的意见，从而影响他对处方的。”1949年，世界医学协会在赫尔辛基通过了《国际医学道德准则》，该准则在法律上引入了知情同意，要求人们被告知将要发生的事情，并在这件事上做出选择。1982，罗纳德·里根任命的总统委员会指出，在法律基础上，知情同意“本质上是一种伦理上的迫切要求”。
但可能是现在，我们走得太远了，这样的患者权利已经成为患者的负担；随着信息浪潮的兴起，消费者文化向医疗保健领域的延伸，伴随着医生们看似战术性的退却，这使得患者变得过于无人看管。
假设，在这个互联网时代，任何医疗问题都可以通过过去完全由私人医生掌握的信息来解决。许多患者现在都会这样做，但不是全部；研究表明，当人们感到社会规范鼓励这种行为时，以及当他们有足够的健康知识和信心时，他们更有可能这样做。伦敦大学学院的研究人员发现，患者通常会带来在线信息，以帮助他们倡导治疗，但在做出最终决定时，仍然会寻求遵从医生的权威。
毫无疑问，这是一个进步。当我十几岁的时候，我被扔进了脊柱侧凸的背部支架里，医生没有提供任何关于选择的信息，我只能梦想着今天我们指尖所能得到的知识，这让我明白，在我的情况下，背部支架可能是不必要的。但基于互联网的授权也有其局限性。以杰基为例：像任何优秀的千禧一代一样，她已经搜索了“新冠肺炎疫苗过敏”并阅读了一篇网络医学博士的文章，但发现很难理解，因此，杰基没有感到被赋予权力，反而感到被遗弃。
一代人以来，非官方消息来源越来越多地填补了这一空白。RxList是一个包含患者教育的药物索引，于1995年推出，1996年推出WebMD，1999年推出Healthline Media。1997年，FDA放宽了直接面向消费者的药物广告的规定，医疗信息变得更容易获取，尽管不是更客观。尽管杰基的医生不会告诉她该怎么做，但2019年，美国制药行业在美国花费了45亿美元在直接面向消费者的广告上，告诉患者该选择什么药物。广告听起来清晰而权威，这正是人们在焦虑和信息过载时所渴望的。
另一个更好答案的潜在来源是远程医疗，这一流行病有助于普及远程医疗。2020年3月，远程医疗的使用比前一年增加了150%，从而消除了超越新冠病毒的医疗障碍，使患者从前往医生办公室的时间和困难中解脱出来。如果患者有足够的保险，它还可以让他们多逛商店。
这对医生来说也很方便：据一家医疗行业出版物称，医生可以在亲自进行一次数字健康检查的时间内塞满三到六次数字健康检查。医生也越来越多地参与异步“访问”或电子邮件交流，在这种交流中，患者键入问题，然后再收到答复。如果这种潜在的有效访问形式不能取代医患对话，那么它可以扩大医患对话。
但这一结果也可能与美国医学协会目前在其医疗道德准则中对其成员提出的要求不一致：为每位患者量身定制服务，并记住患者仍然应该能够信任医生，将他们的福利放在首位。远程医学的快速约会性质可能会削弱医生和患者之间的个人联系，诱使医生远离他们作为向导和治疗者而不仅仅是客户服务代表的责任。当人们渴望进行更有意义的对话时，远程医疗及其与人类接触的分离往往是不够的。
理论上，我们所有人都是医疗保健消费者，在医疗决策中拥有更多发言权，这是没有问题的；从服装到咖啡，我们在其他领域为消费者提供信息和授权。但这些都无法与医疗保健的利害关系或复杂性相比，因为医疗保健有许多选择是不可撤销的。
然而，有证据表明，医生越来越多地向患者的偏好屈服。在《公共科学图书馆综合》（PLOS One）上发表的2017年一项针对2000多名医生的研究中，临床医生报告说，他们实施的药物、测试甚至程序中超过20%的护理是不必要的。
在近60%的病例中，医生说他们这样做是因为病人的压力或要求，比如咖啡师额外提供一杯浓咖啡。
对大多数医生（85%）来说，过度治疗的主要原因是害怕在正式执业时被起诉。诉讼最近并没有增加，但医疗事故诉讼获得了更高的赔偿。有一半的美国医生透露了工作倦怠的迹象，谁能责怪他们屈服于我们的要求，而不是冒着冲突的风险？但是，如果我们的医生减少了他们作为向导的角色，我们所有人都会在健康选择中遇到困难。围绕医疗保健的压力问题自然不会产生我们最好的个人决策。相反，它们倾向于驱使我们进入诺贝尔奖获得者、行为经济学家丹尼尔·卡尼曼（Daniel Kahneman）所称的“系统一”思维——与系统二更系统、数据驱动的思维相比，它更基本、更快速、更直观，并且基于情感线索和很少的信息。
我们的医生需要引导我们走过这个迷宫。除了提供护理，他们还有义务帮助患者根据证据和医学知识进行选择。实现这一目标的第一步是建立密切关系和信任，然后提供清晰有效的信息——让患者有机会同时使用系统一和系统二思维。同时，患者需要意识到自己的直觉反应倾向，并确保追求他们能够处理的信息。问自己一个好问题是，“我有没有得到任何System 2信息，我如何才能最好地理解它？”
当然，当疼痛和恐惧袭来时，患者收到的任何处方建议都可能变得毫无意义。当我母亲摔断臀部时，我亲身体验到了这一点。深夜，根据急诊室护士的简短推荐，我联系了两位医生。其中一个人出现了，衣冠不整，向我母亲简洁地解释了这个过程，同时用他的登山靴做了眼神交流。“这是什么医生？”妈妈问。“我不要他。”
根据心理学家罗伯特·夏尔迪尼（Robert Cialdini）的研究，她是根据自己对医生的亲和力和权威系统的看法做出决定的。与此同时，我被另一个系统——一个因素——稀缺原则——所左右：他在那里，没有其他人在那里。由于焦虑和情绪激动，我们两人都没有想到询问医生对第二系统有用的成功率。
由于缺乏可信和权威的指导，我们都容易陷入这些心理陷阱。当我们很难做到这一点时，我们的医生是让我们自己做决定，还是让我们放弃他们的角色？风险在于患者放弃，伪装成医疗消费主义。

Miron Shatz博士是一位心理学家，也是《你的生活取决于它：你可以做些什么来更好地选择你的健康》（基础书籍）一书的作者，这篇文章就是根据这本书改编的。
Can Patients Decide Their Own Care? 

When Covid-19 vaccinations became available, Jackie (a false name, yet a true story), who suffers from allergies, wasn’t sure whether or not to get vaccinated. She asked her doctor. His answer was, “Do whatever you think is right.” Of course, your own preferences should guide your health choice. Except, in this case, Jackie had no preference other than to do the right thing—if only she knew what it was.
Leaving the decision in her hands could be construed as treating her as a “healthcare consumer,” a term that has been growing exponentially on Google Scholar, the world’s academic research repository, as a new, more empowered term for “patient.”We’ve come a long way since 1847, when the ethical code of the American Medical Association stated, in the paternalistic manner of the time, “The obedience of a patient to the prescriptions of his physician should be prompt and implicit. He should never permit his own crude opinions as to their fitness, to influence his attention to them.” The legal introduction of informed consent in the International Code of Medical Ethics, which the World Medical Association adopted in Helsinki in 1949, required that people are told what is about to happen to them, and given choice in the matter. In 1982, a presidential commission appointed by Ronald Reagan stated that beyond its foundation in law, informed consent “is essentially an ethical imperative.” 
But it might be that now, we’ve gone a bit too far and such patient rights have become patient burdens; that amid a rising wave of information, the extension of consumer culture to healthcare—accompanied by a seeming tactical retreat by doctors—is leaving patients too unattended.
Hypothetically, in this internet age, any medical question could be resolved with information that used to be solely the province of personal physicians. Many patients now routinely seek this out, but not all; people are more likely to do so when they feel the social norms encourage this, research shows, and when they have sufficient health literacy and confidence. Researchers from the University College of London found that often patients bring online information to help them advocate for treatment, but when making the final decision, still seek to defer to their doctor’s authority.
This is no doubt an advance, to be sure. When I was a teenager, thrown into a back brace for scoliosis and offered no information about options by my doctor, I could only dream of the knowledge available at our fingertips today, which could have clued me in that in my case the brace might be unnecessary. But internet-based empowerment also has its limitations. Take Jackie: Like any good millennial, she had already searched “Covid-19 vaccination allergies” and read through a WebMD article, but found it difficult to understand—so instead of feeling empowered, Jackie felt abandoned.
Unofficial sources increasingly have been filling this void for a generation now. RxList, a medication index with patient education, launched in 1995, WebMD in 1996, and Healthline Media in 1999. Medical information became more accessible, though not more objective, after the FDA relaxed the regulations of direct-to-consumer medication advertising in 1997. Whereas Jackie’s doctor would not tell her what to do, the U.S. pharmaceutical industry spent $4.5 billion dollars on direct-to consumer advertising in the U.S. in 2019 to tell patients what medication to choose. That advertising sounds clear and authoritative, which is what people crave when they are anxious and overloaded with information.
Another potential source for better answers is telemedicine, which the pandemic has helped to popularize. In March 2020 telemedicine use increased 150% from the previous year, removing barriers to care that go beyond Covid by freeing patients from the time and difficulty of traveling to doctors’ offices. It also empowers patients to shop around more, if they have adequate insurance.
It’s convenient for doctors too: A doctor can cram three to six digital health visits into the time it takes to have one in person, according to one medical trade publication. Doctors also increasingly participate in asynchronous “visits,” or email exchanges in which patients type a question and receive an answer later. This potentially efficient form of access can expand the doctor-patient conversation—if it doesn’t replace it.
But the result can also be discordant with what the AMA currently asks of its members in its Code of Medical Ethics: to tailor services to each patient, and to remember that patients should still be able to trust physicians to prioritize their welfare. The speed-dating nature of remote medicine can diminish the personal connection between doctors and patients, tempting physicians away from their responsibility to be guides and healers and not just customer service representatives. When people crave a more meaningful dialogue, telemedicine and its dissociation from human contact often isn’t enough.
In theory, there is no problem with all of us being healthcare consumers and having more say in our medical decisions; we are informed, empowered consumers in other domains from clothing to coffee. But none of those compare with the stakes or complexities of healthcare, where many choices are irrevocable.
Still, evidence shows that doctors increasingly are yielding to their patients’ preferences. In a 2017 study of over 2,000 doctors published in PLOS One, clinicians reported that over 20% of the care they administered—medication, tests, even procedures—was unnecessary.
In almost 60% of cases, doctors said they did it because of patient pressure or request, like a barista providing an extra shot of espresso.
For the majority of doctors (85%), the main reason for overtreatment is fear of being sued formal practice. Litigation hasn’t gone up recently, but malpractice suits are granted greater awards. With half of U.S. doctors disclosing signs of burnout, who can blame them for ceding to our demands rather than risking conflict? But all of us have trouble navigating health choices if our doctors reduce their role as guides. The stressful issues surrounding healthcare do not naturally produce our best individual decision-making. Instead they tend to drive us to what the Nobel laureate and behavioral economist Daniel Kahneman called our “System One” thinking— more basic, quick and intuitive and based on emotional cues and little information, in contrast with the more methodical, data-driven thinking of System Two.
Our doctors need to steer us through this maze. Beyond providing care, they have a duty to help patients choose based on evidence and medical knowledge. The first step toward this is establishing rapport and trust, followed by delivering clear, valid information— to give patients a chance to use both System One and System Two thinking. Patients, meanwhile, need to be aware of their own tendency to react intuitively and make sure to pursue information they can process. A good question to ask yourself is, “Did I get any System Two information, and how can I best understand it?” 
Naturally, any prescriptive advice patients receive may become moot when pain and fear kick in. I experienced this firsthand when my mother broke her hip. Late at night, I contacted two doctors based on the emergency room nurse’s brief recommendation. One showed up, disheveled, and gave my mother a laconic explanation of the procedure, while making eye contact with his hiking boots. “What kind of a doctor is this?” Mom asked. “I do not want him.” 
She was basing her decision on her perception of the doctor’s likability and authority—System One thinking, according to the work of psychologist Robert Cialdini. Meanwhile, I was swayed by another System One factor, the scarcity principle: He was there, and no one else was. Anxious and emotional, neither of us thought to inquire about the doctor’s success rates—useful for System Two.
We are all prone to these psychological traps, absent trusted and authoritative guidance. When we have trouble getting that, are our doctors enabling us to make our own decisions, or retreating from their roles? The risk is patient abandonment, disguised as healthcare consumerism.
Dr. Miron-Shatz is a psychologist and author of “Your Life Depends On It: What You Can Do To Make Better Choices About Your Health” (Basic Books), from which this essay is adapted.

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