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伴有不良结局的长期生存:一项定性与伦理分析。

Long-term survival with unfavourable outcome: a qualitative and ethical analysis.

作者信息

Honeybul Stephen, Gillett Grant R, Ho Kwok M, Janzen Courtney, Kruger Kate

机构信息

Department of Neurosurgery, Sir Charles Gairdner Hospital and Royal Perth Hospital, Perth, Western Australia, Australia.

Dunedin Hospital and Otago Bioethics Centre, University of Otago, Dunedin, New Zealand.

出版信息

J Med Ethics. 2015 Dec;41(12):963-9. doi: 10.1136/medethics-2013-101960. Epub 2014 Jun 25.

DOI:10.1136/medethics-2013-101960
PMID:24965718
Abstract

OBJECTIVE

To assess the issue of 'retrospective consent' among a cohort of patients who had survived with unfavourable outcome and to assess attitudes among next of kin regarding their role as surrogate decision makers.

METHODS

Twenty patients who had survived for at least 3 years with an unfavourable outcome following a decompressive craniectomy for severe traumatic brain injury were assessed with their next of kin. During the course of a semistructured interview, participants were asked whether they would have provided consent if they had known their eventual outcome. They were also asked for general comments regarding all aspects of the clinical journey. Eighteen patients had next of kin who were available for interview. For two patients, there was no longer any family involvement.

RESULTS

Of the 20 patients, 13 were able to provide a response and 11 felt that they would have provided consent even if they had known their eventual outcome. Of the 18 next of kin who were able to express an opinion, 10 felt that they would have provided retrospective consent.

CONCLUSIONS

Many patients appeared to have adapted to a level of disability that competent individuals might deem unacceptable. This does not necessarily mean that such outcomes should be regarded as 'favourable', nor that decompressive craniectomy must be performed for patients with predicted poor outcome. Nevertheless, those burdened with the initial clinical decisions and thereafter the long-term care of these patients may draw some support from the knowledge that unfavourable may not necessarily be unacceptable.

摘要

目的

评估一组预后不良但存活下来的患者中的“追溯同意”问题,并评估其近亲作为替代决策者的态度。

方法

对20例因严重创伤性脑损伤行减压颅骨切除术后至少存活3年且预后不良的患者及其近亲进行评估。在半结构化访谈过程中,询问参与者如果他们知道最终结果是否会给予同意。还询问了他们对临床过程各个方面的总体看法。18例患者有可供访谈的近亲。另外2例患者已无家人参与。

结果

20例患者中,13例能够给出回应,11例认为即使知道最终结果也会给予同意。18例能够表达意见的近亲中,10例认为会给予追溯同意。

结论

许多患者似乎已经适应了一定程度的残疾,而有行为能力的个体可能认为这种残疾是不可接受的。这并不一定意味着这样的结果应被视为“有利的”,也不意味着必须对预后不良的患者进行减压颅骨切除术。然而,那些负责最初临床决策以及此后这些患者长期护理的人,可能会从“不良结果不一定不可接受”这一认识中获得一些支持。

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Long-term survival with unfavourable outcome: a qualitative and ethical analysis.伴有不良结局的长期生存:一项定性与伦理分析。
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