Master's Program of Transition and Leisure Education for Individuals With Disabilities, University of Taipei, Taipei, Taiwan.
National Academy Educational Research, Taipei, Taiwan.
BMC Med Ethics. 2024 May 18;25(1):59. doi: 10.1186/s12910-024-01060-w.
The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents.
Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP.
Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal.
Diverse preferences in LST and ANH were shaped by the public's current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals' perspectives on LST and ANH decisions for neurological patients..
《病人自主权利法》(PRAA)于 2019 年在台湾实施,通过预立医疗照护计划(ACP)实现预先决定(AD)。该法律框架允许在不可逆昏迷、植物人状态、重度痴呆或无法承受的疼痛等情况下,停止或撤回维持生命的治疗(LST)或人工营养和水合(ANH)。本研究旨在调查城市居民在各种临床情况下对 LST 或 ANH 的偏好、参与者偏好的变化以及影响这些偏好的因素。
采用调查预先结构化的 AD 文件和便利抽样收集数据,从台北市医院招募参与者,该医院自 PRAA 实施的第一年即成为台湾 ACP 的主要试验和示范机构。研究检查了 AD 和 ACP 咨询记录,记录了性别、年龄、福利权益、疾病状况、家庭护理经验、ACP 咨询地点、二级亲属参与情况以及参与 ACP 的意愿。
从电子记录中提取了 2337 名参与者的数据。拒绝 LST 和 ANH 的意愿高度一致,在终末期疾病和极度严重痴呆之间存在显著差异。此外,ANH 被广泛接受为限时治疗,并且普遍存在授权医疗保健代理人(HCA)代表参与者做出决定的趋势。性别差异明显,女性更倾向于拒绝 LST 和 ANH,而男性则倾向于接受全或限时治疗。年龄也起作用,年轻参与者更倾向于接受治疗和授权 HCA,而年长参与者更倾向于拒绝。
不同的 LST 和 ANH 偏好是由公众对不同临床状态、性别、年龄和文化因素的现有理解塑造的。我们的研究揭示了微妙的临终偏好、不断演变的 AD 和社会人口因素的影响。进一步的研究可以探讨随时间推移的偏好演变以及医疗保健专业人员对神经患者 LST 和 ANH 决策的观点。