Research in Focus: Discussing diabetes, palliative care and end of life care
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 care or advance care directives; often because clinicians are reluctant to discuss these issues. Guidelines for conversations and decision aids can assist shared decision-making for both clinicians and patients.
To co-design information with older people with diabetes, families and clinicians to facilitate conversations about palliative and end of life care, and revise the Guidelines for Managing Diabetes at the End of life, first published in 2010.
What we did
We co-designed and revised the Guidelines and tailored information with two advisory groups:
- older people with diabetes/families
- interdisciplinary expert clinicians
We undertook a scoping literature review to identify relevant issues to include in the Guidelines. The penultimate versions were externally evaluated in focus groups and via written feedback from representative stakeholder clinicians, people with diabetes and international experts in communication, palliative care and diabetes.
We found co-design with key end-users improved the relevance of the Guidelines and the information to these groups. The information met design and language criteria. Important differences between people with diabetes and clinicians emerged concerning the words they used to refer to death. For example, clinicians choose euphemisms such as ‘passed away’ and ‘gone.’ People with diabetes preferred clear language and found euphemisms confusing and misleading. Clinicians, who rarely encountered death in their practice said they lacked education about how to discuss diabetes end of life care. The revised Guidelines are an important step towards clinicians and patients having more meaningful and valuable discussions about palliative/end of life care in the future.
Read the Guidelines
Read the Guidelines for planning palliative and end of life care with older people with diabetes here.
- Information for health professionals
- Information for families and carers
- Information for people with diabetes
- Revised Guidelines for Deciding Palliative and End of Life Care with People with Diabetes
Authors: Trisha Dunning, Peter Martin, Sharyn Milnes, Nick Simpson, Georgie Lee and Neil Orford
Barwon Health Department: The Centre for Quality and Patient Safety Research