This week’s hot topic is not one many people have thought much about. But organ donation, and particularly ‘presumed consent’ (PC), is one we will all have to start thinking much more about in the next five years. It was one of three debates on Tuesday (28 June) at the BMA, it has been covered in all the major newspapers and was debated on Radio 4. The Welsh Assembly know much more about presumed consent as they are hoping to introduce it into Wales within five years. And if Wales have it, then the rest of the UK may follow suit.
So what is ‘presumed consent’, and more importantly, what could possibly be of concern with it? At the moment individuals can only donate their organs if they have registered their willingness to be a donor after their death. However, because of the shortage of organ donors and consequent waiting lists for transplant operations in the UK, some groups, including the BMA, are keen to change the law to one of presumed consent. This would mean every person is automatically an organ donor unless he/she has specifically ‘opted out’ by registering his or her objection to donation after their death.
First, we need to emphasise that organ donation is to be welcomed and encouraged. There has been a big increase of people registered as organ donors in the UK in the last 14 or so years and now 30% are registered, 18 million in total. This is encouraging and there is no reason why this upward trend should not continue.
Second, we need to understand what the primary ethical issue is behind the debate. It is NOT about organ donation per se. It is all about consent, namely, informed consent. I’ll come back to this later.
Third, despite what PC proponents claim, the way to increase donor numbers does NOT depend upon changing the law. Donation rates are actually more dependent on other factors. To illustrate, Spain is often held up as a model to follow, with presumed consent legislation and high donation rates. But this is not a causal connection because the threefold increase in organ donation in Spain occurred without changing the law. It occurred because the system there was changed. The Director of the Spanish National Transplant Organisation, Dr Rafael Matesanz, made it quite clear when giving evidence to the House of Lords that the key to success in Spain has been due to organisational changes, not legislation, for example, having a centralised office for coordination, regional organ donation coordinators and trained coordinators in each hospital to talk to families.
“I would emphasise this point that I believe it is the structure rather than the law. Spain pro rata has three times as many intensive care beds as in this country and it has three times as many donors pro rata. Spain has three times as many organ donor co-ordinators as in this country and it has three times as many organ donors. I do not think those two things are a coincidence”
Moreover, Sweden has presumed consent yet has lower donation rates than the UK! It’s not about legislation but cultural and logistical factors. But, for arguments sake, perhaps PC legislation could make a difference alongside structural changes? So why not support it just in case it might make a difference?
Because there are other issues involved too, especially (but not only) the issue of informed consent. What we do not often hear in the debates is that, in effect, presumed consent equals no consent, unless there is an extensive public information programme, which would need to capture the entire adult population including those on the margins of society. Only this would ensure that those who do not opt out of donation have made a positive choice, rather than doing so by default, or by ignorance or by a lack of knowledge or understanding.
Consent is the golden thread running through most medical procedures and also the Human Tissue Act 2004 which covers organ donation. Donation for transplantation is one of the scheduled purposes where consent is required. Informed consent is clearly considered essential so why should consent for transplantation be treated differently from other procedures?
Without informed consent, donation becomes ‘taking’ organs rather than ‘giving’ them. It would lose any altruism and would generate a perception that the State decides what happens to an individual’s organs rather than the individual making the decision. Which brings me to another concern around consent: who would actually own the body and organs after death under a PC law? Presumably the State would have legal ownership? Families would be ‘informed’ that the deceased had not opted out, but any objection they might have to removal of the deceased’s organs would have to be ‘assessed’ and justified.
Organ donation should remain an altruistic, free gift in the context of fully informed and considered consent. Just as it is at the moment.
The real lesson to be learnt from the Spanish system, is that we need to organise donation services to increase donation rates – which we would all like to see – but a change in legislation to make it PC is unnecessary, illiberal and unethical.