接受专业家庭姑息治疗的肌萎缩侧索硬化症患者生前遗嘱和预先护理计划。

Sebastiano Mercadante, Pietro Petronaci, Alessio Lo Cascio
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摘要

目的:在意大利,最近批准了一项法律,提供患者关于生命结束问题的愿望,国际上通常称为“生前遗嘱”(dichiazione anticipata di trattamento, DAT)。无论这份官方文件如何,在姑息治疗环境中,预先护理计划(ACP)经常被用于分享开始、继续和退出的治疗,从而防止在紧急决定时的压力。本研究的目的是评估接受家庭姑息治疗的肌萎缩性侧索硬化症患者的DAT和ACP。方法:对连续接受姑息治疗的患者进行前瞻性评估。记录DAT或ACP的存在。结果:纳入68例患者。没有病人有淹没的DAT,只有一个病人提供了他的ACP在家庭姑息治疗入院前。在家庭姑息治疗护理援助过程中,30.9%的患者提供了ACP。讨论:在意大利,尽管有现行法律,但DAT结果几乎没有普及,因为没有患者正式提供关于生命结束问题的指示。此外,只有不到1/3的患者在开始专门的家庭姑息治疗后才给予ACP。家庭姑息治疗似乎是一个基本的资源,以改善沟通和征求表达病人的意愿关于生命结束的问题。
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Living Will and Advance Care Planning in Patients With Amyotrophic Lateral Sclerosis Admitted to Specialistic Home Palliative Care.

Objectives: In Italy a recent law was approved for providing patients' wishes regarding end of life issues, commonly referred internationally to as "living wills", (Dichiarazione anticipata di trattamento, DAT). Regardless of this official document, advance care planning (ACP) is often used in a palliative care setting to share the treatments to start, to continue, to withdraw, thus preventing the stress on an acute decision. The aim of this study was to assess DAT and ACP in patients with amyotropic lateral sclerosis admitted to home palliative care. Methods: Patients consecutively admitted to speciliazed home palliative care were prospectively assessed. The presence of DAT or ACP was recorded. Results: Sixty-eight patients were enrolled in the period taken into consideration. No patient had drown up DAT, and only one patient provided his ACP prior to home palliative care admission. Along the course of home palliative care care assistance, 30.9% of patients provided their ACP. Discussion: In Italy DAT resulted scarcely widespread, despite an existing law, as no patient officially provided their indication on end of life issues. In addition, ACP was given only after starting specialized home palliative care in less than 1/3 of patients. Home palliative care seems to be a fundamental resource for improving communication and soliciting expression of patients' wishes regarding end of life issues.

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