Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care

Scand J Caring Sci; 2013; 27; 203–211 Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care Introduction:  Providing palliative care for people with diabetes at the end of life is part of the chronic disease care trajectory, but end of life care is complex and the presence of diabetes further complicates management. Aim:  The aim of the paper is to discuss the ethical and methodological issues encountered when undertaking research to develop guidelines for managing diabetes at the end of life and the strategies used to address the issues. Method:  The issues emerged as we developed guidelines for managing diabetes at the end of life, which included conducting individual interviews with 14 people with diabetes requiring palliative care and 10 family members. A reflexive researcher journal was maintained throughout the guideline development process. The interview transcripts and researcher’s journal were analysed to determine key methodological, ethical and researcher‐related issues. Findings:  Key themes were vulnerability of the sampling population, methodological issues included recruiting participants and ensuring rigor, ethical issues concerned benefit and risk, justice, autonomy, privacy, professional boundaries and informed consent. Researcher‐related issues were identified such as managing participant distress and their own emotional distress. People were willing to discuss end of life diabetes management preferences. Conclusions:  Undertaking research with people at the end of life is complex because of their vulnerability and the ethical issues involved. However, the ethical principles of autonomy and justice apply and people should be given the relevant information and opportunity to decide whether to participate or not.