A newly updated online resource launching on Healthtalk.org gives voice to families and healthcare professionals navigating the sensitive and often misunderstood area of organ donation after death. This sheds light on the impact England’s recent ‘opt-out’ legislation is having through first-hand experience and practical guidance.

Drawing on a national evaluation led by researchers at the Policy Innovation and Evaluation Research Unit (PIRU) at the London School of Hygiene & Tropical Medicine (LSHTM) and Bangor University, the website includes testimony from families who experienced bereavement of an adult family member following the 2020 law change. The site also features interviews with healthcare staff and specialist nurses who support families at the bedside when their relative dies.

The 2020 legislation introduced a ‘soft opt-out’ system, meaning adults in England are now presumed to have agreed to organ donation unless they’ve registered otherwise or belong to an excluded group. Previously, England operated an ‘opt-in’ system where individuals had to actively register their consent to donate their organs after death.

The HealthTalk resource translates these policy changes into accessible, human stories. It aims to clarify how the law works, support informed conversations about donation, and ensure people's decisions are better understood and respected. It does this by sharing the real experiences of people who have been involved in an organ donation conversation after their relative died and the professionals involved in supporting families through what is an incredibly difficult time.

Professor Nicholas Mays, Chief Investigator and Professor of Health Policy at LSHTM, said:

“Our research showed that while public support for organ donation remains high, many families are still unsure what their relative would have wanted. The updated HealthTalk resource offers clear, compassionate guidance to help individuals and families understand the law and ensure they are reassured in extremely difficult circumstances.”

Dr Leah Mc Laughlin, Research Fellow at Bangor University, who led the interviews with bereaved families, added:

“Families frequently told us how overwhelming and disorienting it was to be approached about organ donation at such an emotionally raw moment—often just hours after the sudden death of a loved one. By sharing their stories here, we hope others will feel more prepared for what donation involves, less shocked when it is raised, and more confident in discussing their decisions ahead of time.

It is rarely the principle of organ donation that families struggle with, but when confronted with the reality of what it involves; namely the time needed to organise the organ retrieval and the perception of invasive procedures, families understandably are not prepared. While their reactions are entirely human, they can unintentionally override the decision their loved one made in life—denying them the chance to help others and, in some cases, going against the intention of the law. That’s why early conversations, clear information, and support are so vital.”

The Healthtalk website includes:

• First-hand accounts from families across England.
• Insights from specialist nurses explaining how they support families and clarify how the legislation is designed to help.
• Dedicated sections on ethnicity and faith, aiming to support people from communities where talking about organ donation may be challenging, or where misinformation has caused confusion or mistrust.
• Clear explanations of ‘deemed consent’ in the ‘opt out’ system, the role of families, and how to register or share your decision.

Read more about the research: https://piru.ac.uk/research/completed-projects/organ-donation-legislation-evaluation.html

Read more about why the law was changed and the debates leading up to it here: https://www.cambridge.org/core/journals/health-economics-policy-and-law/article/why-did-england-change-its-law-on-deceased-organ-donation-in-2019-the-dynamic-interplay-between-evidence-and-values/622DDD66E330A6EDAF29E9FD31B713A0

Visit the updated Healthtalk module:
https://healthtalk.org/deceased-organ-donation/