Division of Medical Ethics, Weill Cornell Medical College and The Rockefeller University, New York, NY.
Arch Phys Med Rehabil. 2013 Oct;94(10):1934-9. doi: 10.1016/j.apmr.2012.12.028. Epub 2013 Jun 14.
By their nature, care decisions for patients with severe disorders of consciousness must involve surrogates. Patients, so impaired, have lost their decision-making capacity and the ability to direct their own care. Surrogates-family members, friends, or other intimates-must step in and make decisions about ongoing care or its withdrawal. This article shares the narrative experiences of these surrogate decision makers as they encounter the American health care system and accompany patients from injury through rehabilitation. Through their perspectives, the article considers challenges to ongoing care and rehabilitation that are a function of a prevailing medical infrastructure and reimbursement framework better suited to patients with acute care needs. Specific attention is paid to the ethical challenges posed by reimbursement strategies such as "medical necessity" as well as those proposed for the Affordable Care Act. The argument concludes that when it comes to care for a disorder related to consciousness, its provision is not discretionary, and its receipt is not an entitlement but a civil right.
由于其性质，严重意识障碍患者的护理决策必须涉及代理人。这些患者已经丧失了决策能力和指导自己护理的能力。代理人——家庭成员、朋友或其他亲近的人——必须介入并决定持续护理或停止护理。本文分享了这些代理人在遇到美国医疗保健系统并陪伴患者从受伤到康复的过程中的叙述经历。通过他们的视角，本文考虑了由于普遍的医疗基础设施和报销框架更适合急性护理需求的患者而对持续护理和康复造成的挑战。特别关注了“医疗必要性”等报销策略以及《平价医疗法案》提出的策略所带来的伦理挑战。该论点的结论是，当涉及到与意识相关的护理时，其提供不是随意的，其接受不是一种权利，而是一项公民权利。
