Introduction: In 2008, to increase availability of organs for transplant, controlled organ Donation after Circulatory Death (DCD) was re-introduced as a donor pathway in the UK National Health Service (NHS) and now makes up 49% of deceased organ donors. Despite increasing availability of donor organs, the routine use of DCD has created new problems, relating to increases in the length of time to get from donation consent to Withdrawal of Life Sustaining Treatment (WLST). Unpublished evidence shows this time doubled between 2011-2019 and internal analyses by NHS Blood and Transplant (NHSBT) show length of the process is still increasing. These delays have been linked to distress for donor relatives and refusal or withdrawal of donation consent. Delays in DCD have ethical, practical, and economic ramifications relating to missed donation opportunities, and potentially exacerbating relatives’ distress. However, no research has comprehensively looked at causes and experiences of delays to enable development of effective interventions. In this presentation we will outline our current study, funded by the National Institute for Health & Care Research, which aims to examine experiences and processes of delay in DCD in the UK.
Methods: The study takes an ethnographic approach to investigate delays in DCD. We are conducting four inter-related Work Packages (WPs) over 21 months:
WP1: Scoping review of evidence to understand what is currently known about the reasons, experiences, and management of DCD delays in the UK;
WP2: Ethnographic case studies (observations and interviews with staff and donor relatives) within two NHS Trusts and beyond to understand why delays occur, how they are managed and experienced;
WP3: Analysing the national ‘DonorPath’ (donation electronic medical record). We will analyse a sample of open-text data from DCD DonorPath records to validate and extend the ethnographic findings.
WP4: Synthesise findings and develop recommendations: We will hold workshops with key stakeholders to assess study findings and develop recommendations for addressing DCD delays.
Results: We will report on emerging findings from the ethnographic case studies, for which recruitment has recently begun. We will use the presentation to highlight some of the challenges and issues with conducting ethnographic research on organ donation in the UK, with a view to sharing good practice with colleagues.
Conclusion: We argue that the ethnographic approach is necessary to understand and contextualise complex, organisational issues like delays in DCD and advocate for the use of ethnography in the field of organ donation research