My Brother's Keeper: Surrogate Decision Making at the End of Life

我们生命中最重要的“生死”决定绝大多数是由其他人在我们没有能力做出自己的医疗决定时代表我们做出的。然而，学者们对我们兄弟的守护者如何做出这些生死攸关的决定几乎一无所知。 这项研究询问这些代理决策者是谁，以及他们是如何被选中的。他们如何看待自己的角色？他们如何处理复杂的医疗信息？他们使用什么标准来做出医疗决定，他们遵循什么过程？他们面临哪些道德挑战？与其他处于信任地位的人相比，这些即时受托人表现如何？当重要的其他人对正确的做法意见不一时，会发生什么？当病人没有人代表他们说话时怎么办？预先指示有什么影响？法律的法规和判例法在绝大多数没有最终进入法院的生命终结决定中扮演什么角色？卫生保健从业人员在制定和影响决策方面发挥什么作用？在住院治疗过程中，决策是如何变化的？代理人在谈判那些不再能为自己说话的人的生死时，会采取什么不同的轨迹？ 这些轨迹及其结果如何因患者和代理人的特征而变化？这项研究是在一家大型城市教学医院的神经重症监护室进行的，该医院为人口统计学上非常多样化的患者群体提供服务，其中许多人无法做出自己的医疗决定。 该研究涉及对医疗保健提供者与患者家属，朋友，监护人和其他重要人士之间的日常互动进行不引人注目的观察，因为他们决定寻求积极的医疗保健，扣留或撤回生命支持或捐赠器官。 这项研究记录了后者提出的问题，他们表达的关注和价值观，他们对病人的陈述，他们分享的记忆，原因和理由，他们没有说或问的事情，他们谈判的分歧，以及他们做出和重新做出的决定。此外，该研究还提供了有关医疗保健提供者如何与患者的这些发言人互动，他们与他们协商的条件，以及他们如何提出问题，建议他们并影响决策的信息。 由于观察方法在临终决策的研究中极为罕见，这些数据有望揭示以前的调查中隐藏的内容，暴露他们的一些偏见，并探索我们的理解或误解可能是由有问题的研究设计形成的。通过记录代理人如何决定，而不是简单地决定什么（正如以前的研究所做的那样），数据揭示了这些决策者如何充当守门人，他们促进或阻碍旨在改变我们死亡方式的政策，并提供洞察力，为什么看似保证的政策干预失败了，为什么我们生命的结束往往遵循这样一个昂贵的过程。 研究结果可能会鼓励法律的决策者根据现有的法律的标准改变或澄清现有的法律，以促进床边决策，改善临床医生与家人谈论临终决定的方式，并使他们成为更有效的守门人，并帮助我们所有人更好地为我们面临的决定或其他人将代表我们面临的决定做好准备，以便我们的代理人或至少那些留下来为我们辩护的人会过得更轻松。该项目将产生一本书和文章，供学者（社会科学，法律，医学和生物伦理学），决策者和公众使用。

The most significant "life-and-death" decisions of our lives are overwhelmingly made by others who act on our behalf when we are not competent to make our own medical decisions. Yet scholars know next to nothing about how our brothers' keepers make these life-and-death decisions. This study asks who these surrogate decision makers are and how they have been selected. How do they conceive their role? How do they process complex medical infor-mation? What criteria do they use to make medical decisions and what process do they follow? What ethical challenges do they face? How do these instant fiduciaries comport themselves compared to others in positions of trust? What happens when significant others disagree about the proper course to take? What about when patients have no one to speak on their behalf? What impact do advance directives have? What role do legal statutes and case law play in the vast majority of end-of-life decisions that do not end up in the courts? What role do health care practitioners play in framing and influencing decisions? How do decisions change over the course of hospitalization? What are the different trajectories surrogates take as they negotiate the lives and deaths of those who can no longer speak for themselves? And how do those trajectories and their outcomes vary by characteristics of patients and surrogates? The study is set in the neurological intensive care unit of a large urban teaching hospital serving a very demographically diverse body of patients, many of whom are unable to make their own medical decisions. The study involves the unobtrusive observation of day-to-day interactions between health care providers and patient families, friends, guardians, and significant others as decisions are made to pursue aggressive medical care, withhold or withdraw life support, or donate organs. The study records the questions the latter ask, the concerns and values they articulate, their statements about the patient, the memories, reasons, and justifications they share, the things they don't say or ask, the disagreements among one another they negotiate, as well as the decisions that they make and remake. In addition, the study provides information on how health care providers interact with these spokespersons for their patients, the conditions under which they confer with them, and how they frame the issues, advise them, and influence the decisions. Because observational methods are extremely rare in studies of end-of-life decision making, these data are expected to reveal what has remained hidden from previous inquiries, expose some of their biases, and explore the ways in which our understandings or perhaps misunderstandings may have been shaped by problematic research designs. By chronicling how surrogates decide rather than simply what they decide (as much previous research has done), the data expose how these decision makers act as gatekeepers who facilitate or stand in the way of policies designed to change the way we die and provide insight into why seemingly guaranteed policy interventions have failed and why it is that the ends of our lives often follow such an expensive course. Research findings may encourage legal policymakers to change or clarify existing law in light of the existing legal standards in order to facilitate decision making at the bedside, improve how clinicians talk with families about end-of-life decisions and empower them as more effective gatekeepers, and help all of us better prepare for the decisions we face or that others will face on our behalf so that we will be well served by our surrogates or at least that those left to advocate for us will have an easier time. This project will yield a book and articles accessible to scholars (in social science, law, medicine, and bioethics), policymakers, and the general public.