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Difficult Conversations: Consent for organ donation: how the law has changed

14 Apr 2021

Transplantation of organs have altered the lives of many people who otherwise would have died. Since the first kidney transplants in the 1960s in the UK there have been successful introduction of liver, heart, lung, pancreas and small bowel.

Transplantation of organs have altered the lives of many people who otherwise would have died. Since the first kidney transplants in the 1960s in the UK there have been successful introduction of liver, heart, lung, pancreas and small bowel. Transplant of various tissues such as cornea, bone and bone marrow are also possible. Donors can be live such as a relative or other close match or from a recently deceased non-related donor. Consent for this latter type of donation has changed in most parts of the UK in the last few years with the exception of Northern Ireland and some Crown dependencies. The law in Scotland changed on the 26 March this year.

It is recognised that asking for consent at a time when a family has or is about to have an unexpected death is stressful to say the least. It is also stressful for the medical staff. The changes in the law in Wales, England and now Scotland have also come with an education programme for both the public and hospital staff.

Previously all parts of the UK had an “opt in” system, that the individual had to positively say that in the event of a situation arising when they would not recover, they wanted to donate their organs. In Wales, England and Scotland there is now an “opt out” system. Here the law presumes consent to transplantation unless you have specifically said you do not want to donate your organs or tissue. It is often called a soft opt out system because your decision is not irreversible. The decision can be changed and your relatives are consulted about your current wishes. In Scotland there is a duty to investigate your current wishes from relatives and or friends. There are exceptions in all areas with an age and residential qualification and capacity to consent. While the systems in each area are slightly different the philosophy is similar.

In Wales, where the law changed on 1 December 2015, the consent rate for suitable donors rose from 58% in 2015 to 77% in 2019. In 2018-19, 40% of the population chose to opt in on the register and only 5.9% to opt out.

The College submitted a response to a consultation twice to the parliament at Holyrood. It felt whether the new system was adopted or not was a decision for our society and not a medical decision. It was our duty to say that any change in policy needed to be associated with an increase in the number of donations. At the time the Welsh evidence had not become available. It is too early to assess the change in the law in England.

With this in mind the College arranged a webinar on 23 March which is available to view. It discusses in detail the changes in Scottish law and the ethics associated with the change in law which applies to the other jurisdictions which have changed their laws (Wales, Jersey and England). We had Mr John Casey, Specialist advisor on Organ donation and Transplantation to the Scottish Chief Medical Officer, Dr David Chung Vice, President of the Royal College of Emergency Medicine and Professor Alison Britton, Professor of Healthcare and Medical Law at Glasgow Caledonian University. The speakers spoke of their experiences of difficult conversations on what is already a bad day for the donors and their families.

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