Disorders of Consciousness and Disordered Care: Families, Caregivers, and Narratives of Necessity
Disorders of Consciousness and Disordered Care: Families, Caregivers, and Narratives of Necessity
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DOI：
10.1016/j.apmr.2012.12.028
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发表时间：
2013-10-01
影响因子：
4.3
通讯作者：
Fins, Joseph J.
中科院分区：
文献类型：
--
作者：
Fins, Joseph J.
就其性质而言，对严重意识障碍患者的护理决定必须涉及代理人。如此受损的患者丧失了决策能力和指导自己护理的能力。代理人家庭成员，朋友或其他亲密的人必须介入并决定是否继续护理或撤销护理。本文分享了这些代理决策者的叙事经验，因为他们遇到了美国的医疗保健系统，并陪同病人从受伤到康复。通过他们的观点，文章认为，持续的护理和康复是一个功能的现行医疗基础设施和报销框架更适合急性护理需求的患者的挑战。特别关注的是报销策略，如“医疗必要性”以及那些提出的负担得起的医疗法案所带来的道德挑战。该论点的结论是，当涉及到与意识有关的疾病时，其提供不是自由裁量的，其接收不是一种应享权利，而是一项公民权利。(c)2013年美国康复医学大会（American Congress of Rehabilitation Medicine）
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. (c) 2013 by the American Congress of Rehabilitation Medicine