However, a decade later, Dr. Leah McLaughlin, Research Fellow at the School of Health Sciences at VRƵ, says that the change has had little impact — and that while consent rates do vary year on year, overall consent rates are no better now than when the legislation was introduced 10 years ago.
Leah said: “The anticipated increase in organ donation consent rates has not materialised. Although the pandemic may have played a role in this, our research suggests that legislative changes alone are insufficient without addressing the underlying ethical tensions and the need for clear, compassionate communication with families during such difficult times.”
For the past ten years, and with the support of the Wales Kidney Research Unit, Professor in Health at VRƵ, Jane Noyes and Leah have played leading roles in various studies to learn more about the impact of opt-out and associated interventions.
Jane explained: “The organ donation process can be overwhelming, and often families were faced with complex consent paperwork and lengthy procedures, adding to the emotional burden of losing a loved one. Many families we spoke with didn’t fully understand the concept of deemed consent. This is where a decision to donate is assumed unless a person has actively opted out. In some cases, families struggled with the idea of their loved one undergoing surgery and lost sight of the potential lives saved through organ donation.”
Our research highlights several ways to improve the system. Clearer public education is essential, as many people still don’t realise they are presumed to have given consent unless they opt out.”
VRƵ in collaboration with the London School of Hygiene & Tropical Medicine have also developed an online resource which helps families in England and Wales better understand the “deemed consent” (opt-out) organ donation law. The resource includes real-life stories from bereaved families and healthcare professionals and information on how the law works. The aim is to reduce confusion, ensure people’s donor decisions are respected, and support meaningful family conversations ahead of time. The resources can also be used for teaching healthcare professionals about organ donation and deemed consent. The link is available here.
Jane added: “The donation process should also be simplified to ease the burden on grieving families. Giving greater legal weight to decisions made in life, such as joining the Organ Donor Register, could help prevent families from overriding their loved one’s decision. Healthcare professionals also need better training to navigate the law and support families effectively – in what are often unique and tragic circumstances. Regular prompts encouraging people to update their preferences may further reduce confusion. Only then can we hope to increase donation rates and save more lives.”
North Wales Medical School at VRƵ has also been running an Organ Donation workshops for students, encouraging them to discuss organ donation with both donor and recipient families who are invited to take part. Working in partnership with Betsi Cadwaladr University Health Board and specialist organ donation nurses from across Wales, the workshops are designed to develop students’ confidence and communication skills in this highly sensitive area of care.
Elinor Thomas, a fourth-year student who took part in the workshop, said she was grateful to have the opportunity to explore organ donation as part of her course: “The workshop was an extremely important interprofessional experience, led by specialist nurses from the organ donation team. We were given a glimpse into how organs are recovered and the profound impact organ donation has on patients and their families. The day was both informative and enjoyable, and provided valuable insight into a deeply emotional and sensitive subject.”
If you would like to understand more about our research on organ donation please contact Jane Noyes and Leah Mclaughlin.
