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姑息性癌症治疗中以患者为中心的决策:一个充满矛盾的世界。

Patient centered decision making in palliative cancer treatment: a world of paradoxes.

作者信息

de Haes Hanneke, Koedoot Nelleke

机构信息

Department of Medical Psychology, Academic Medical Center, Meibergdreef 15, 1105 AZ Amsterdam, The Netherlands.

出版信息

Patient Educ Couns. 2003 May;50(1):43-9. doi: 10.1016/s0738-3991(03)00079-x.

Abstract

Patient centered palliative cancer care would imply, first, the introduction of psychosocial endpoints when evaluating treatment and making decisions. Second, patient control would have to be enhanced by information giving and increased decision involvement. We have indicated that paradoxes exist when a patient centered approach is advocated in the context of palliative cancer care. So-called patient oriented outcomes, like quality of life, once introduced seem to be disregarded by many patients themselves and survival is given a more important weight. Likewise, physicians seem to be inclined to treat patients aggressively for little benefit rather than providing supportive care. Both parties seem to prefer to do something actively to maintain a semblance of control over the disease process. Giving treatment, even if aggressive, is a way to avoid the confrontation with the little efficacy that the physician has to offer to incurable cancer patients. This mechanism is reflected in the content of conversations in palliative care. Patient centered care would imply that patient control and autonomy are enhanced. However, again paradoxically, many patients seem to want to avoid information and leave the decisions to be made by their doctors. Physicians, then, follow such wishes while paying more attention to aggressive therapy than to the notion of watchful waiting. This may help to avoid the painful confrontation with bad news. Dilemmas then remain. Patients wishing to maintain hope and avoid emotional impact of a full understanding of their prognosis may rather not be informed brusquely about prognosis or the aims of supportive therapy and forced to make an informed decision. However, by giving more aggressive, maybe even futile, treatment, and withholding supportive care patients may receive less than 'quality end-of-life care'. Therefore, information about less intrusive strategies should still be given in a cautious manner, while regarding the patient's defenses respectfully.

摘要

以患者为中心的姑息性癌症护理意味着,首先,在评估治疗和做决策时引入社会心理终点。其次,必须通过提供信息和增加决策参与度来增强患者的控制权。我们已经指出,在姑息性癌症护理背景下倡导以患者为中心的方法时存在矛盾之处。所谓的以患者为导向的结果,如生活质量,一旦引入,似乎很多患者自己却不予理会,而生存被赋予了更重要的权重。同样,医生似乎倾向于积极治疗患者却收效甚微,而不是提供支持性护理。双方似乎都更愿意积极采取行动,以维持对疾病进程的某种控制表象。给予治疗,即使是积极的治疗,也是一种避免面对医生对无法治愈的癌症患者所能提供的微小疗效的方式。这种机制反映在姑息治疗中的谈话内容中。以患者为中心的护理意味着患者的控制权和自主权得到增强。然而,同样矛盾的是,许多患者似乎想回避信息,而将决策留给医生。然后,医生遵循这些意愿,同时更关注积极治疗而非观察等待的理念。这可能有助于避免与坏消息的痛苦对峙。困境依然存在。希望维持希望并避免因完全了解预后而产生情感影响的患者,可能宁愿不被生硬地告知预后或支持性治疗的目标,也不愿被迫做出明智的决定。然而,通过给予更积极甚至可能无效 的治疗,而不提供支持性护理,患者可能无法获得“高质量的临终护理”。因此,关于侵入性较小的策略的信息仍应以谨慎的方式提供,同时尊重患者的防御机制。

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