Margaret McCartney: When organ donation isn’t a donation
BMJ 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
Re: Margaret McCartney: When organ donation isn’t a donation
The first full accounting year for deemed consent for organ donation in Wales has just been completed, and we await with interest the statistics from NHS Blood and Transplant. These will be available in a few months. Margaret McCartney's Comment comes at an opportune moment, and reminds us that it is far too early to make any claims for or against the deemed consent system in Wales. Because of Wales' relatively small population, it will take several years before any valid assessment can be made. This has not inhibited prestigious organisations such as the BMA, quality newspapers such as the Guardian, and senior politicians in Wales from claiming that the system is a success that has already saved dozens of lives.
The Chief Medical Officer for Wales, Dr Frank Atherton, in commenting on Dr McCartney's article, agrees that it is too early to assess the efficacy of deemed consent. He nevertheless offers the view that "The first year of the new policy gives cause for optimism that Wales is moving in the right direction". However, figures from NHS Blood and Transplant showed that there had been only 39 donors from hospitals in Wales for the 9 months from April to December 2016, whereas in the preceding 12 months there had been 64 donors. By contrast, in Scotland, there had been 95 donors from April to December 2016, in comparison with 99 donors in the whole of the previous year. For the UK as a whole, the donation rate was slightly higher in April to December 2016 in comparison with the previous year.
Dr Atherton also states that "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" . If this statement means that the legislation can take several years to have an effect, there is no evidence for it. In fact, if there is one statistic where one might expect to see an immediate effect of deemed consent legislation it is consent rates. For the 2015/2016 year, consent rates for organ donation (DCD and DBD) were 61.8 % in the UK as a whole. For England, Northern Ireland, Scotland and Wales the figures were 62%, 58.9%, 57.1% and 59.2%. In that year, deemed consent was in operation in Wales for the last 4 months. It will be interesting to see the consent rates for the 2016/2017 year, due shortly. By comparison, it is worth noting that Spain, which does not operate a presumed consent system (and in fact requires families to sign a consent form even when the donor's consent is explicit) has for many years had a family consent rate of around 85%.
Dr McCartney's article also highlights the risks and uncertainties of deemed consent. These issues are discussed in more detail in "Presumed consent for organ donation: a clinically unnecessary and corrupting influence in medicine and politics", in Clinical Medicine Volume 14, pages 567 - 571 (2014).
Competing interests: No competing interests