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重度持续性精神疾病患者临终关怀中的伦理问题映射:文献综述

Mapping the ethical aspects in end-of-life care for persons with a severe and persistent mental illness: A scoping review of the literature.

作者信息

Moureau Loïc, Verhofstadt Monica, Liégeois Axel

机构信息

Faculty of Theology and Religious Studies, KU Leuven, Leuven, Belgium.

Medical and Health Sciences, Ghent University, Ghent, East Flanders, Belgium.

出版信息

Front Psychiatry. 2023 Mar 16;14:1094038. doi: 10.3389/fpsyt.2023.1094038. eCollection 2023.

Abstract

Persons with severe and persistent mental illness (SPMI) make up a vulnerable group within mental healthcare and society. Not only do they suffer from long-term, serious psychiatric disorders; they often also experience considerable problems in their psychosocial functioning. Research has disclosed that the care needs of this target group are complex, and that the life expectancy of these persons is significantly lower than in the general population. Given (1) the lower life expectancy of persons with SPMI, (2) the higher suicide risk related to mental disorders, and (3) the legalization and practice of medical assistance in dying in an increasing number of countries, it is of utmost importance to map the ethical aspects and challenges of end-of-life care needs in persons with SPMI. Therefore, we charted the way end-of-life care is provided for them by means of a scoping review of the scientific literature, with an emphasis on the ethical aspects surrounding it. We explore existing ethical dilemmas; the underlying ethical values, principles and attitudes; and the locus and stakeholders of ethical dialog regarding end-of-life care in persons with SPMI. The results indicate that the four guiding principles of biomedical ethics can well be identified in the literature, and are each addressed in their own specific way: Autonomy in relation to questions regarding the decision-making capacity of persons with SPMI; Justice in relation to access to quality care and the presence of stigma; and Non-maleficence and Beneficence in relation to the ongoing debate regarding the benefits and obstacles in applying palliative care approaches in the context of psychiatry, and the status of the futility-concept therein. Personal virtues and attitudes in care professionals, like compassion, non-abandonment and upholding dignity are key, as care professionals are the main advocates of persons with SPMI, which often lack an extensive social network. Further, we find that the ethical dialog is mainly focused on care professionals and relatives, rather than the persons with SPMI themselves. This is reflected in the existing research that often had the voices of the latter missing. Future research may benefit from the inclusion of persons with SMPI's first-hand accounts. End-of-life care for persons with SPMI may benefit from identifying and integrating (locally developed) good practices like cross-sectoral education, specific care models, and ethics support.

摘要

患有严重且持续性精神疾病(SPMI)的人在精神卫生保健和社会中构成了一个弱势群体。他们不仅患有长期、严重的精神疾病,而且在心理社会功能方面往往也存在相当大的问题。研究表明,这一目标群体的护理需求复杂,而且这些人的预期寿命明显低于普通人群。鉴于(1)患有SPMI的人的预期寿命较低,(2)与精神障碍相关的自杀风险较高,以及(3)越来越多的国家将医疗协助死亡合法化并付诸实践,梳理SPMI患者临终护理需求的伦理层面和挑战至关重要。因此,我们通过对科学文献的范围综述,描绘了为他们提供临终护理的方式,重点关注其周围的伦理层面。我们探讨了现有的伦理困境;潜在的伦理价值观、原则和态度;以及关于SPMI患者临终护理的伦理对话的场所和利益相关者。结果表明,生物医学伦理的四项指导原则在文献中能够很好地被识别,并且各自以特定的方式得到阐述:与SPMI患者决策能力问题相关的自主性;与获得优质护理和存在污名化相关的公正;以及与在精神病学背景下应用姑息治疗方法的益处和障碍的持续辩论以及其中无效概念的地位相关的不伤害和有益。护理专业人员的个人美德和态度,如同情心、不抛弃和维护尊严,是关键,因为护理专业人员是SPMI患者的主要倡导者,而这些患者往往缺乏广泛的社会网络。此外,我们发现伦理对话主要集中在护理专业人员和亲属身上,而不是SPMI患者自身。这反映在现有研究中,后者的声音常常缺失。未来的研究可能会受益于纳入SPMI患者的第一手叙述。SPMI患者的临终护理可能会受益于识别和整合(当地发展的)良好实践,如跨部门教育、特定护理模式和伦理支持。

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