Division of Geriatric Medicine and Gerontology, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
J Am Geriatr Soc. 2011 Dec;59(12):2337-40. doi: 10.1111/j.1532-5415.2011.03700.x. Epub 2011 Nov 8.
A cornerstone of American medical ethics is the right to say, "Keep your hands off of me," to decline medical treatment. A central problem is how to decide about individuals who have become incapacitated and can no longer request or refuse potentially life-sustaining treatment. An advance directive is a formal attempt to protect people's right to autonomy when they are no longer autonomous. As such, it assumes that previously expressed wishes are precise and immutable, but many families make decisions together, and individuals may negotiate, compromise, and modify their genuine preferences, especially when novel threats arise, and the stakes are high. The current article describes a case in which two daughters overruled a patient's explicit preference to refuse life-sustaining treatment, leading to burdensome illness before death. In the end, the mother seemed to understand her children's needs and seemed willing, at least in retrospect, to have met those needs. After the death of this individual, we continued to talk with the daughters and videotaped an interview in which they shared their perspectives on the case. The daughters consented to be videotaped and to share the video with the medical community (available in online version of article). Their forceful devotion to their mother and their search in retrospect for what could have been done differently has completely changed our understanding of events. We believe that the daughters' behavior is not the indefensible breach of respect for person that it seemed to be. Their mother's true wishes might well have included a desire to help her children during her own dying. Family members' preferences are likely to be important considerations for many people, although the possibility of coercion has to be acknowledged as well. Accommodating this level of decision-making complexity is highly problematic for our understanding of advance directives.
美国医学伦理学的基石之一是有权说“别碰我”，拒绝医疗。一个核心问题是如何决定那些已经丧失能力且无法再请求或拒绝可能维持生命的治疗的个人。预立医疗指示是正式尝试在个人不再自主时保护其自主权的权利。因此，它假设先前表达的意愿是准确且不可改变的，但许多家庭会共同做出决策，个人可能会协商、妥协和修改他们真正的偏好，尤其是在出现新的威胁且风险很高的情况下。本文描述了这样一个案例：两个女儿推翻了患者明确拒绝维持生命的治疗的意愿，导致患者在去世前经历了痛苦的疾病。最终，母亲似乎理解了孩子们的需求，并似乎愿意（至少事后看来）满足这些需求。在该患者去世后，我们继续与女儿们交谈，并录制了一段采访视频，其中她们分享了对该案例的看法。女儿们同意被录像并与医学界分享视频（可在文章的在线版本中查看）。她们对母亲的强烈奉献精神以及事后对可能采取不同行动的反思，完全改变了我们对事件的理解。我们认为，女儿们的行为并不是对尊重人格的不可辩护的侵犯，因为这似乎是最初的看法。她的母亲的真实愿望很可能包括在她自己临终时帮助她的孩子。虽然也必须承认存在胁迫的可能性，但家庭成员的偏好可能是许多人重要的考虑因素。在我们对预立医疗指示的理解中，这种决策的复杂性是很难解决的。
