Table_2_Mapping the ethical aspects in end-of-life care for persons with a severe and persistent mental illness: A scoping review of the literature.DOCX

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.

重型持续性精神疾病（severe and persistent mental illness, SPMI）患者是精神医疗照护与社会层面的弱势群体。此类群体不仅饱受长期严重精神障碍的折磨，还往往在社会心理功能方面存在诸多显著障碍。研究表明，该目标群体的照护需求十分复杂，且其预期寿命显著低于普通人群。鉴于（1）重型持续性精神疾病患者预期寿命偏低，（2）精神障碍相关自杀风险更高，以及（3）越来越多国家实现了医疗辅助死亡的合法化与实践，明确重型持续性精神疾病患者临终照护需求中的伦理议题与挑战已成为当务之急。为此，本研究通过对科学文献开展范围综述（scoping review），梳理了针对该群体的临终照护实施现状，并重点围绕其相关伦理议题展开分析。本研究探讨了现存的伦理困境、背后的伦理价值、原则与态度，以及重型持续性精神疾病患者临终照护相关伦理对话的场域与利益相关方。研究结果显示，生物医学伦理学的四大核心原则在相关文献中均有明确体现，且各自以特定方式得到探讨：针对重型持续性精神疾病患者决策能力相关问题的自主原则；关乎优质照护可及性与污名化问题的公正原则；以及围绕精神病学领域应用姑息治疗手段的利弊争议、以及其中无效性概念定位的不伤害与行善原则。照护从业者的个人美德与态度，如同情心、不遗弃与维护尊严，是关键所在——由于重型持续性精神疾病患者往往缺乏广泛的社会支持网络，照护从业者正是此类群体的主要倡导者。此外，研究发现伦理对话主要聚焦于照护从业者与家属，而非重型持续性精神疾病患者本人，这一点在现有研究中体现为：患者的声音往往被忽视。未来的研究若纳入重型持续性精神疾病患者的一手叙述，将更具价值。针对重型持续性精神疾病患者的临终照护，可通过识别并整合（本地开发的）优质实践模式获益，例如跨部门教育、专属照护模型以及伦理支持。