Historically Wales has had a strong belief in the health of the public. Not only did Wales lead England with a ban on smoking in public places but has now made the bold move to introduce a system of “deemed consent” for organ donation. This concept, considered but rejected by the UK Task Force on Organ Donation in 2007 is one of the measures which could increase the number of organs available for transplantation.
Organ donation is important for several reasons. Firstly it is literally lifesaving in many cases, patients with serious organ failure , be it heart , lungs, or kidney will die prematurely without a transplant and many do so tragically whilst awaiting an organ. I have seen through my own practice on the Welsh border patients return to a normal life after transplant rather than having their lives dominated by hospital attendance or sitting for hours during home dialysis. Not only are these patients physically restricted but they become increasingly ill and frail.
Secondly, although a subsidiary consideration, transplantation, especially renal transplantation makes economic sense as the costs including transplantation are substantially less than continuing dialysis and treatment.
During the passage of the legislation and afterwards substantial publicity will inform the public of the switch to presumed consent, and the choices they should make. If a person wishes to donate they may join the NHSBT organ donor register to show their consent, if they do not wish to donate then they register their wishes on the ‘opt out’ section of the register. If they fail to do either they will have been deemed to consent UNLESS their family or close friend or carer knows of credible evidence that they would not have wished to donate. This is not a veto for the family but a safeguard to ensure that the last known wishes of the deceased are carried out correctly.
This check with the family ensures that the last known wishes of the deceased are respected rather than implementing the wishes of the family or friends. Under the new Welsh system, as with the current English situation, if there is overwhelming family distress at the thought of organ donation then the donation will not go ahead. This is a judgement call made by the experienced co-ordination team.
The ethical principles underpinning the Welsh system are autonomy and the ‘gifting’ of life to another. Many organs are lost because the deceased had not made their wishes known to their family and friends even when they would have been happy to consent. The new Welsh system ensures that every chance is given to ascertain those wishes and support autonomous choice.
Dissent against opt-out schemes
The arguments made against a change in the law are that choice about what happens to one’s body is reduced because the State could intervene and take organs without consent. There is also an argument that not everyone in the country would be aware of the change and therefore their informed consent could not be assumed.
Firstly, and most importantly, the State is not taking anyone’s organs. The process followed when a patient is recognised as being a potential donor in the new Welsh system is exactly the same as that used currently in England. The difference is that the transplant co-ordinators , known as SNODS and CLODS, (senior nurse for organ donation and clinical lead for organ donation) having checked the NHSBT organ donor register can speak to the relatives with the assumption that unless an opt out is registered consent will be deemed. This change of emphasis is extremely important.
The autonomous choice for any patient before their death is exactly the same in both systems, specifically: do I want to donate or not? Therefore there is no reduction of choice or loss of autonomy.
One of the additional safeguards which has been repeatedly stressed by the BMA is that there must be a substantial, repeated and prolonged publicity campaign to ensure that the public are informed of the change to the law and the choices they can make.
There are those who say that the change will make little difference to the number of organs available. It is clear that there are many factors which affect donation rate but the shortage of organs is acute and any system which will reduce the shortfall must be a benefit. Introducing this system in a relatively small and defined population will provide a model for additional rollout into the rest of the UK.
Dr Tony Calland is a retired GP, now chair of the BMA’s medical ethics committee. He was also previously chair of the BMA Wales Council and a GPC negotiator.