Dunning Trisha, Martin Peter, Milnes Sharyn, Simpson Nick, Lee Georgie B, Orford Neil
Centre for Quality and Patient Safety Research, Barwon Health Partnership, Deakin University, Geelong, Australia; School of Nursing and Midwifery, Deakin University, Geelong, Australia.
School of Medicine, Deakin University, Geelong, Australia.
Ann Palliat Med. 2021 Apr;10(4):3739-3749. doi: 10.21037/apm-20-1548. Epub 2021 Mar 26.
Palliative care and advance care planning are important components of diabetes and other chronic disease management plans. Most people with diabetes do not have conversations about palliative/end of life (EOL) care or advance care directives; often because diabetes clinicians are reluctant to discuss these issues. Guidelines for conversations and decision aids can assist shared decision-making for both clinicians and patients. The aim was to co-design information with older people with diabetes, families and clinicians to facilitate conversations about palliative and EOL care and to identify the language (words) people with diabetes, families and diabetes clinicians use to discuss death and dying.
We co-designed and tailored the information with advisory groups: (I) older people with diabetes/families, (II) interdisciplinary expert clinicians and undertook a scoping literature review to identify relevant content. The penultimate versions were independently evaluated in focus groups and via written feedback from representative stakeholder clinicians, people with diabetes and international experts in communication, palliative care and diabetes.
The information met design and language criteria: 62 people participated in focus groups (48 clinicians, 14 older people with diabetes and 4 family members). There were important differences between people with diabetes and diabetes clinicians concerning the words used to refer to death: 'the language of death'. Diabetes clinicians choose soft words/euphemisms such as 'passed away' and 'gone' and indicated they mirrored patient language. People with diabetes preferred clear language and indicated euphemisms were confusing and misleading. Diabetes clinicians, rarely encountered death in their practice and indicated they lacked education about how to discuss diabetes EOL care.
Co-design with key end-users improved relevance to these groups. Diabetes clinicians prefer to use euphemisms for death and would benefit from education and strategies to help them initiate conversations about EOL diabetes care.
姑息治疗和预立医疗计划是糖尿病及其他慢性病管理计划的重要组成部分。大多数糖尿病患者未就姑息/临终（EOL）护理或预立医疗指示进行过交流；这通常是因为糖尿病临床医生不愿讨论这些问题。交流指南和决策辅助工具有助于临床医生和患者共同做出决策。本研究旨在与老年糖尿病患者、其家属及临床医生共同设计信息，以促进关于姑息和临终护理的交流，并确定糖尿病患者、家属及糖尿病临床医生在讨论死亡时所使用的语言（词汇）。
我们与咨询小组共同设计并调整了信息：（I）老年糖尿病患者/家属，（II）跨学科专家临床医生，并进行了范围界定文献综述以确定相关内容。倒数第二版在焦点小组中进行了独立评估，并通过来自有代表性的利益相关者临床医生、糖尿病患者及沟通、姑息治疗和糖尿病领域的国际专家的书面反馈进行评估。
该信息符合设计和语言标准：62人参与了焦点小组（48名临床医生、14名老年糖尿病患者和4名家属）。糖尿病患者和糖尿病临床医生在用于指代死亡的词汇方面存在重要差异：即“死亡语言”。糖尿病临床医生选择使用委婉语，如“去世”和“走了”，并表示他们是在模仿患者的语言。糖尿病患者更喜欢直白的语言，并表示委婉语令人困惑且具有误导性。糖尿病临床医生在实践中很少遇到死亡情况，并表示他们缺乏关于如何讨论糖尿病临终护理的教育。
与关键最终用户共同设计提高了与这些群体的相关性。糖尿病临床医生更倾向于使用死亡委婉语，他们将从相关教育和策略中受益，以帮助他们开启关于糖尿病临终护理的交流。
