Albashayreh Alaa, Gilbertson-White Stephanie, Al Nashash Dalal, Shamieh Omar, Al-Omari Ma'an, Kinser Patricia
College of Nursing, University of Iowa, Iowa City, IA, USA.
Kuwait Cancer Control Center, Ministry of Health, Kuwait City, Kuwait.
Palliat Support Care. 2024 Oct;22(5):986-993. doi: 10.1017/S1478951523000226.
This study aims to explore seriously ill patients' experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan.
This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs.
Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity.
Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.
本研究旨在探讨中东国家约旦重症患者在照护目标讨论中的经历以及临终(EOL)决策的观点。
这是一项采用半结构化一对一访谈的定性描述性研究。研究地点为约旦的2家大型医院。患者是经过有目的抽样选取的14名讲阿拉伯语的成年重症患者,他们因姑息治疗需求而住院。
常规内容分析确定了4个主要主题:重症期间感知到的痛苦、对讨论临终决策的态度、照护目标和临终偏好,以及加强临终决策的行动。疾病和治疗负担以及对生活、家庭和死亡的担忧是重症期间痛苦的来源。临终时对患者最重要的是减轻痛苦并获得家人、朋友和照护提供者的支持。尽管由于不确定性、缺乏意识和恐惧假设,患者对临终决策表示不情愿且不作为,但其潜在的照护目标是活得更长、与家人在一起并尊严地死去。
约旦人和文化上相似的阿拉伯人可从照护目标讨论中受益。在具有类似文化规范的阿拉伯人群中,以适当的、具有文化敏感性的方式实施照护目标讨论,需要提高公众意识并阐明照护目标讨论的合法性,让患者及其家人为讨论做好准备,并考虑在处理讨论时的个体差异。