Discussing diabetes, palliative and end of life care: choosing the ‘right’ language

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.