Drought Theresa S, Koenig Barbara A
Kaiser Permanente, Oakland, CA 94612, USA.
Gerontologist. 2002 Oct;42 Spec No 3:114-28. doi: 10.1093/geront/42.suppl_3.114.
The contribution of bioethics to clinical care at the end of life (EOL) deserves critical scrutiny. We argue that researchers have rarely questioned the normative power of autonomy-based bioethics practices. Research on the ethical dimensions of EOL decision making has focused on an idealized discourse of patient "choice" that requires patients to embrace their dying to receive excellent palliative care.
Our critique is based on a comprehensive review of empirical research exploring bioethics practices at the EOL. In addition we will provide a brief review of our own ethnographic, longitudinal study of the decision-making experience of dying patients, their families, and their health care providers.
There is little or no empirical evidence to support the autonomy paradigm of patient "choice" in EOL decision making. What we found is that (a). prognostication at the EOL is problematic and resisted; (b). shared decision making is illusory, patients often resist advance care planning and hold other values more important than autonomy, and system characteristics are more determinative of EOL care than patient preferences; and (c). the incommensurability of medical and lay knowledge and values and the multifaceted and processual nature of patient and family decision making are at odds with the current EOL approach toward advance care planning.
It is exceedingly difficult to identify, study, and critique normative assumptions without creating them, reproducing them, or obliterating them in the process. However, a fuller account of the morally significant domains of end-of-life care is needed. Researchers and policy makers should heed what we have learned from empirical research on EOL care to develop more sensitive and supportive programs for care of the dying.
生物伦理学对临终关怀的贡献值得严格审视。我们认为，研究人员很少质疑基于自主性的生物伦理学实践的规范力量。关于临终决策伦理维度的研究聚焦于一种理想化的患者“选择”话语，这种话语要求患者接受死亡以获得优质的姑息治疗。
我们的批评基于对探索临终生物伦理学实践的实证研究的全面综述。此外，我们将简要回顾我们自己对临终患者、其家人及其医疗服务提供者决策经历的人种志纵向研究。
几乎没有实证证据支持临终决策中患者“选择”的自主性范式。我们发现：（a）临终时的预后判断存在问题且遭到抵制；（b）共同决策是虚幻的，患者常常抵制预先护理计划，且持有比自主性更重要的其他价值观，系统特征对临终护理的决定性大于患者偏好；（c）医学知识与外行知识及价值观的不可通约性，以及患者和家庭决策的多面性和过程性，与当前临终预先护理计划的方法不一致。
在不创造、复制或消除规范假设的情况下识别、研究和批评这些假设极其困难。然而，需要更全面地阐述临终关怀中具有道德重要性的领域。研究人员和政策制定者应留意我们从临终关怀实证研究中学到的内容，以制定更具敏感性和支持性的临终关怀项目。
