Jensen Hanne Irene, Farmer Sarah Leeth Hansen, Skaarup Lillian Oxholm, Løkke Anders, Hygum Anette, Ipsen Mette Jo, Gamst Lisbeth Høilund, Klausen Maybritt Brunsgård
Department of Anesthesiology and Intensive Care, Vejle Hospital, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark; Department of Anesthesiology and Intensive Care, Kolding Hospital, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark; Department of Regional Health Research, University of Southern Denmark, Odense M, Denmark.
Department of Medicine, Hematology, Vejle Hospital, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark.
Patient Educ Couns. 2025 Mar;132:108608. doi: 10.1016/j.pec.2024.108608. Epub 2024 Dec 17.
The objective of this study was to develop and test a patient decision aid for end-of-life care to be used when some or all life-sustaining treatments have been withheld or withdrawn.
A multi-professional, multi-sectorial group together with patients and relatives used a systematic process to develop and test the patient decision aid, including alpha and beta testing.
Healthcare professionals, patients and relatives were involved in the development and testing. The final Decision Helper included three areas with nine options: follow-up (outpatient clinic and general practitioner), palliative care (primary care, specialised palliative care team, hospital admission and hospice) and treatment level (intensive care, resuscitation attempt and nutrition via feeding tube). Most participants agreed that the amount of information in the Decision Helper was appropriate, that it clearly presented benefits and disadvantages and that it was useful in the value clarification process, helping to verbalise preferences and what is most important for patients.
Most patients and healthcare professionals found that the decision aid would be helpful in facilitating shared decision-making in an end-of-life conversation.
The decision aid will be usable in different healthcare setting ensuring that end-of-life care is in accordance with patients' wishes.
本研究的目的是开发并测试一种用于临终关怀的患者决策辅助工具，该工具适用于部分或全部维持生命的治疗已被中止或撤除的情况。
一个由多专业、多部门人员组成的团队，连同患者及其亲属，采用系统的流程来开发和测试该患者决策辅助工具，包括进行α测试和β测试。
医疗保健专业人员、患者及其亲属参与了开发和测试过程。最终的“决策助手”涵盖三个领域，共有九个选项：随访（门诊诊所和全科医生）、姑息治疗（初级保健、专业姑息治疗团队、住院和临终关怀院）以及治疗水平（重症监护、心肺复苏尝试和通过鼻饲管提供营养）。大多数参与者认为“决策助手”中的信息量适中，能清晰呈现利弊，且在价值观澄清过程中很有用，有助于表达偏好以及明确对患者而言最重要的事情。
大多数患者和医疗保健专业人员认为该决策辅助工具将有助于在临终谈话中促进共同决策。
该决策辅助工具可在不同的医疗环境中使用，确保临终关怀符合患者的意愿。
