Understanding Delays in Organ Donation after Circulatory Death in the UK: An Ethnographic Study

Background & Significance: Controlled Organ Donation after Circulatory Death (DCD) refers to donation from a patient who has died following planned withdrawal of life sustaining treatment (WLST).

In 2008, to increase availability of organs for transplant, DCD was re-introduced as a donor pathway in critical care in the NHS and now makes up 46% of deceased organ donors1.

Despite increasing availability of donor organs, the routine use of DCD has created new problems, relating to increases in length of time to get from donation consent to WLST2-3.

Unpublished evidence shows this time doubled between 2011-2019 (personal correspondence) and internal analyses by NHS Blood and Transplant (NHSBT) show length of the process is still increasing4.

These delays have been linked to distress for staff and donor relatives and those relatives withdrawing or refusing donation consent; length of time for the process is now the second most common reason relatives decline DCD1-2.

Delays in DCD have ethical, practical, and economic ramifications relating to missed donation opportunities, and potentially exacerbating relatives distress. NHSBT has pledged to improve the donation experience by reducing delays5.

However, no research has comprehensively looked at causes and experiences of delays to enable development of effective interventions.

Aims and Objectives: This study aims to examine experiences and processes of delay in DCD in the UK to: 1) Identify reasons for these delays and how these are managed by Specialist Nurses in Organ Donation (SN-ODs). 2) Understand the experiences and impact of delays on donor/non-donor relatives and their support needs during this process. 3) Develop recommendations for interventions relating to delays in DCD, including how best to support potential donor relatives through the process.

Methods: The study takes an ethnographic approach to investigate delays in DCD.

We will conduct 4 inter-related Work Packages (WPs) over 21 months: WP1: Scoping review of evidence (months 1-6) to understand what is currently known about the reasons, experiences, and management of DCD delays in the UK.

WP2: Ethnographic case studies (months 4-15) within two NHS Trusts to understand why delays occur, how they are managed and experienced.

We will: conduct observations of the DCD process, interview health professionals (N=10-15), and donor relatives (N=25-30). Findings will be analysed using narrative and thematic analysis. WP3: Analysing the national DonorPath (donation electronic medical record) (months 10-16).

Summary statistics over 12 months on DCD delays and thematic analysis of a sample of de-identified open text sections in DonorPath over a 12-month period.

WP4: Synthesise findings and develop recommendations (months 17-21): cases illustrating the findings will be used in workshops with key stakeholders to assess study findings and develop recommendations for addressing DCD delays.

Impact and dissemination: impact will be in the form of recommendations disseminated to policymakers and practitioners in NHSBT.

We will work with them to: develop novel interventions around DCD delays and new policy and guidance for family support mechanisms during DCD.

Findings will be disseminated to NHSBT committees and teams, via websites and social media of organ donation charities and via conferences and peer-reviewed publications.