Thamcharoen Natanong, Nissaisorakarn Pitchaphon, Cohen Robert A, Schonberg Mara A
Cheewabhibaln Palliative Care Center, King Chulalongkorn Memorial Hospital, Bangkok, Thailand
Nephrology Division, Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand.
BMJ Support Palliat Care. 2021 Mar 17. doi: 10.1136/bmjspcare-2020-002830.
Advanced kidney disease is associated with a high risk of morbidity and mortality. Consequently, invasive treatments such as dialysis may not yield survival benefits. Advance care planning has been encouraged. However, whether such discussions are acceptable when done earlier, before end-stage kidney treatment decision-making occurs, is unclear. This pilot study aimed to explore whether use of the Serious Illness Conversation Guide to aid early advance care planning is acceptable, and to evaluate the information gained from these conversations.
Patients with advanced kidney disease (stage 3B and above) and high mortality risk at 2 years were enrolled in this mixed-methods study from an academic nephrology clinic. Semi-structured interviews were conducted using the adapted Serious Illness Conversation Guide. Thematic analysis was used to assess patients' perceptions of the conversation. Participants completed a questionnaire assessing conversation acceptability.
Twenty-six patients participated, 50% were female. Participants felt that the conversation guide helped them reflect on their prognosis, goals of care and treatment preferences. Most did not feel that the conversation provoked anxiety (23/26, 88%) nor that it decreased hopefulness (24/26, 92%). Some challenges were elicited; patients expressed cognitive dissonance with the kidney disease severity due to lack of symptoms; had difficulty conceptualising their goals of care; and vocalised fear of personal failure without attempting dialysis.
Patients in this pilot study found the adapted Serious Illness Conversation Guide acceptable. This guide may be used with patients early in the course of advanced kidney disease to gather information for future advanced care planning.
晚期肾病与高发病和死亡风险相关。因此,诸如透析等侵入性治疗可能无法带来生存益处。人们鼓励进行预先护理计划。然而,在终末期肾病治疗决策之前更早地进行此类讨论是否可接受尚不清楚。这项试点研究旨在探讨使用《重病谈话指南》来辅助早期预先护理计划是否可接受,并评估从这些谈话中获得的信息。
从一家学术性肾病诊所招募患有晚期肾病(3B期及以上)且2年死亡风险高的患者参与这项混合方法研究。使用改编后的《重病谈话指南》进行半结构化访谈。采用主题分析来评估患者对谈话的看法。参与者完成一份评估谈话可接受性的问卷。
26名患者参与,50%为女性。参与者认为谈话指南帮助他们思考了自己的预后、护理目标和治疗偏好。大多数人不觉得谈话引发了焦虑(23/26,88%),也不觉得它降低了希望感(24/26,92%)。也发现了一些挑战;患者因没有症状而对肾病严重程度存在认知失调;难以构思自己的护理目标;并表达了对不尝试透析就个人失败的恐惧。
这项试点研究中的患者认为改编后的《重病谈话指南》是可接受的。该指南可在晚期肾病病程早期与患者一起使用,为未来的预先护理计划收集信息。