Margaret McCartney: When organ donation isn’t a donationBMJ 2017; 356 doi: https://doi.org/10.1136/bmj.j1028 (Published 28 February 2017) Cite this as: BMJ 2017;356:j1028
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I read with interest Margaret McCartney’s article in the BMJ “When donation isn’t a donation”
As Dr McCartney’s article sets out, the change to a deemed consent model for organ donation in Wales was established in December 2015. The rationale for this change was that the consent/authorisation rate for organ donation in all four countries of the UK had remained broadly static for many years despite an increase in the number of actual donors. The Welsh Government took the view that a change in public attitude and behaviour in relation to organ donation was needed in order to improve consent rates. Extensive public consultation was undertaken and this supported a legislative change towards a soft opt out system as a way of improving consent rates for organ donation in Wales.
The Human Transplantation (Wales) Act 2013 was designed to make it easier to become an organ donor, and reflects the values and intent of the majority of people in Wales. The change to the system in Wales enables people to clarify their own decision on organ donation and not leave it up to family members who are approached at a time of acute grief.
Dr McCartney’s question as to whether the Welsh change to organ donation policy has been effective cannot be answered at such an early stage following the legislative change. Experience from other countries which have adopted an opt out legislative framework for organ donation suggests that it can take several years for improvements to be seen in organ donation rates but behavioural change does not happen overnight and expecting communities to accept organ donation as a normal part of end of life care could take many years.
The potential organ donor pool has indeed shrunk but this is due to the fact that fewer people are dying in a way where organ donation is a possibility and not as a result of people recording their decision to opt out. Under both the Human Tissue Act 2004 and Human Tissue (Scotland) Act 2006 individuals are able to refuse consent/authorisation to organ donation but until the redevelopment of the organ donation register there was no central point for them to record that decision. Having a central register where individuals are able to record their organ donation decision provides doctors and the public with confidence that they are acting on the patients own preferences and decisions.
The choices people have and information about how to record a decision have been explained and population surveys have shown high levels of understanding around the new law in Wales; in June 2016, when prompted, 83 percent of respondents reported that they were aware of the impending change . The first year of the new policy gives cause for optimism that Wales is moving in the right direction, but we are committed to continued monitoring and impact evaluation with a summary report anticipated in September 2017. We continue to engage with other nations in the UK and beyond to share the Welsh experience and to help inform international decisions about organ donation policy.
Dr Frank Atherton
Chief Medical Officer
Competing interests: No competing interests
Dear Margaret: thank you for your insightful article.
Wales does not have a “soft opt-out system” because the law in Wales states that the deemed consent of the deceased has precedence - which conflicts with the definition of a soft opt-out system (Nuffield Council on Bioethics, 2011).
The Human Transplantation (Wales) Act 2013 is not about donation but about the removal of organs. The Explanatory Memorandum (2013) states that families are “…involved…to answer important questions…” but the Explanatory Memorandum states the families “…do not have a legal veto…”; a veto is central to a soft-opt out system (Nuffield Council on Bioethics, 2011).
The Welsh Assembly Government (2016) stated that “10 people had their consent deemed because they had not registered a decision to either opt-in or opt-out of becoming an organ donor…74% of the Welsh public could describe the changes to the system...”.
The most biased assessment in favour of the forced removal of organs by deemed consent would have to admit that two or three people (26% of the 10) had their organs removed without informed consent.
It is likely that more than three of the 10 were not aware of the changes to the system because younger adults are less likely to know of the legislation and they are a fruitful source of organs.
In my opinion there is continuing shame on the Welsh Assembly Government who legislated for the Human Transplantation (Wales) Act 2013 and on the BMA Wales for their support for the Act.
There is a not a shortage of organs in Wales or elsewhere in the United Kingdom. There are systemic problems linking voluntary donations of organs with recipients.
Evidence sources include the Academy of Royal Colleges Wales, Welsh Intensive Care Society and the UK Faculty of Intensive Care Medicine.
Competing interests: No competing interests