Controversial plans to introduce new legislation on organ donation in Wales have taken a big step forward. This week the Welsh Assembly published a draft bill setting out a legal framework to adopt a system of ‘presumed consent’ for organ donation on death.
If approved, Wales plans to bring this new law into effect in 2015, making it the only part of the UK to instigate the controversial system.
Introducing this legislation would be a radical new step, which is ethically questionable, complicated and unnecessary as a way of increasing organ donation rates.
Currently an ‘opt-in’ consent system operates across the UK. Individuals can authorise organ removal from their bodies after death by joining the Organ Donor Register (ODR), or making their wishes known to their family. However this new legislation would authorise doctors to remove organs and tissue from any patient declared dead, unless the deceased had formally registered their objection.
Families would still be involved in the decision-making process around donation. However guidance offered on the role of families is interesting. The supplementary guidance suggests that next of kin will have some voice but legally will not be able to override or take precedence over the ‘presumed’ consent of the deceased:
‘…under the new system [those who have not opted out] will be deemed to have made a positive decision, and that will take precedence. However, it is important to stress that the next of kin will be treated with sensitivity and their feelings will be carefully considered.’
‘…Where relations do not produce any information about the wishes of the deceased, then they will be sensitively encouraged to proceed with organ donation. It is the case that those close to the deceased do not have the legal right to veto or overrule the decision of the deceased to have their consent deemed. Clinical teams will nevertheless, have a duty of care towards the surviving relatives and if there are very strong objections or distress, then organ donation is unlikely to go ahead. It is important to be clear, however, that this is not a legal veto because the law will recognise the deemed consent of the deceased as having precedence.’ (p10-11, emphasis added)
One can only wonder how this will actually operate in practice. Let’s hope the next of kin all agree on their wishes for the use of the deceased body, that they can express them rationally as their loved one is dying, and that the clinical team are clear exactly what a ‘very strong objection’ is, or is not.
Is this controversial legislation even necessary?
The aim is to increase rates of organ donation and it is well known that there is a shortage of organs for transplant which is a concern that we all agree should be tackled.
However the claim that rates could increase by up to 30% through presumed consent legislation is disingenuous as there is little evidence that this is any better than other schemes in other countries, and there are alternative ways of increasing donation rates.
Donation rates in countries with ‘presumed consent’ laws do not actually differ from countries requiring explicit (opt-in) consent. In fact, some countries operating presumed consent systems have lower rates of organ donation! Differences in rates are due to other factors including the numbers of potential donors, provision of intensive care facilities, end of life care, use of transplant coordinators, trust in the donation system and trust in the medical profession (particularly those treating dying patients).See here for a BMJ article on this.
Advocates of presumed consent like to cite Spain as a legislation success story. However another BMJ article reports that: ‘In fact, what Spain has shown is that the highest levels of organ donation can be obtained while respecting the autonomy of the individual and family, and without presumed consent.’ (emphasis added).
This proposed legislation comes with significant ethical concerns, as detailed in previous CMF blogs. Organ donation is a generous gift and an example of altruism. However consent to organ donation should always be voluntary (un-coerced), informed and autonomous. Silence does not amount to consent.
The Archbishop of Wales says that: ‘Presumed consent is not really consent at all, merely the assumption that there are no objections.’ So the term ‘presumed consent’ is a misnomer, as it involves neither donation nor consent from the individual. Moreover, it is not possible to assume ‘presumed consent’ for the population if there is reasonable doubt that many would indeed consent.
Which brings us back to yet more practical concerns. The pressure group, Patient Concern warns: ‘Assurance that every citizen would hear of the new law, understand it, realise its implications, grasp how to opt-out and get around to doing so – if they wish – is pure fantasy’.
Introducing a system that relies solely on people registering their decision to opt out, has to ensure that everyone is fully informed and understanding of the situation, knows their options and can easily and simply opt-out. Otherwise it cannot be ensured that every removal of human organs is appropriately authorised.
The groups least likely to express their views, if they hold views on this, will include those who are disorganised, apathetic, disabled, less well educated or informed, lacking full capacity, of different languages and race, suffering from mental illness, dependent, those who have less ready access to information and those changing their minds. Silence in many of these cases would and should not amount to consent to donation under an opt-out system.
So where does this leave us now?
In a statement, the Bishops of the Church in Wales said Christians should be encouraged to join the donor register, but organ donation was an ‘altruistic gift’ that should be ‘freely given, not assumed’.
It would be preferable if policy, and the money that follows it, were being directed to factors that do make a difference to rates, rather than towards ethically tricky, and unnecessary, presumed consent legislation. And it would be better to invest resources in wide-reaching public awareness campaigns to encourage more people to become voluntary donors.
While the process has moved far closer to legislation, there are still opportunities to get involved. The government will hold consultations about the proposed bill until September, and anyone can respond to this, though of course it would be especially helpful if Welsh members were able to get involved and contribute. There is still time to try to persuade public opinion that organ donation should remain as a gift.
Although this specific legislation is only for Wales, there is increasing pressure to bring in similar legislation in England and Scotland. So it is not just an issue for Wales, it is one that the rest of the UK may well be considering one day, even more so if it passes into law in Wales.