Nouvet Elysée, Bezanson Kevin, Hunt Matthew, Kouyaté Sekou, Schwartz Lisa, Diallo Fatoumata Binta, de Laat Sonya, Bah-Sow Oumou Younoussa, Diallo Alpha Ahmadou, Diallo Pathé
School of Health Studies, Western University, London, Canada.
Thunder Bay Regional Health Sciences Centre, Thunder Bay, Canada.
J Int Humanit Action. 2021;6(1):10. doi: 10.1186/s41018-021-00099-3. Epub 2021 May 8.
With no cure and a high mortality rate, Ebola virus disease (EVD) outbreaks require preparedness for the provision of end-of-life palliative care. This qualitative study is part of a larger project on palliative care in humanitarian contexts. Its goal was to document and deepen understanding of experiences and expectations related to end-of-life palliative care for patients infected with Ebola virus disease (EVD) in West African Ebola treatment centres (ETCs) during the 2013-2016 epidemic. It consisted of 15 in-depth semi-structured interviews with individuals impacted by EVD in a Guinean ETC: either as patients in an ETC, healthcare providers, healthcare providers who were also EVD patients at one point, family relations who visited patients who died in an ETC, or providers of spiritual support to patients and family. Analysis was team based and applied an interpretive descriptive approach. Healthcare delivery in humanitarian emergencies must remain respectful of patient preferences but also local and contextual values and norms. Of key importance in the Guinean context is the culturally valued experience of "dying in honour". This involves accompaniment to facilitate a peaceful death, the possibility of passing on final messages to family members, prayer, and particular practices to enact respect for the bodies of the deceased. Participants emphasized several challenges to such death in Ebola treatment centres (ETCs), as well as practices they deemed helpful to alleviating dying patients' suffering. An overarching message in participants' accounts was that ideally more would have been done for the dying in ETCs. Building on participants' accounts, we outline a number of considerations for optimizing end-of-life palliative care during current and future public health emergencies, including for COVID-19.
由于埃博拉病毒病（EVD）无法治愈且死亡率高，因此在埃博拉病毒病疫情爆发时需要做好提供临终姑息治疗的准备。这项定性研究是一个关于人道主义背景下姑息治疗的更大项目的一部分。其目标是记录并加深对2013 - 2016年疫情期间西非埃博拉治疗中心（ETC）中感染埃博拉病毒病（EVD）患者的临终姑息治疗相关经历和期望的理解。该研究包括对几内亚一个埃博拉治疗中心中受埃博拉病毒病影响的个人进行的15次深入半结构化访谈：这些人包括埃博拉治疗中心的患者、医护人员、曾一度也是埃博拉病毒病患者的医护人员、探访在埃博拉治疗中心死亡患者的家属，或为患者及家属提供精神支持的人员。分析由团队进行，并采用解释性描述方法。人道主义紧急情况下的医疗服务必须尊重患者的偏好，同时也要尊重当地的价值观和规范。在几内亚的背景下，“尊严地死去”这种具有文化价值的经历至关重要。这包括陪伴以促成平静的死亡、向家庭成员传递最后信息的可能性、祈祷以及为尊重死者遗体而进行的特定做法。参与者强调了在埃博拉治疗中心实现这种死亡面临的若干挑战，以及他们认为有助于减轻临终患者痛苦的做法。参与者叙述中的一个总体信息是，理想情况下，在埃博拉治疗中心本可以为临终者做更多事情。基于参与者的叙述，我们概述了在当前及未来公共卫生紧急情况（包括针对新冠疫情）期间优化临终姑息治疗的一些考虑因素。
