Organ Donation

body parts - organs.jpg

CARE encourages the donation of organs. However, we oppose forced or presumed consent of organ donation. We believe organ donation should be a gift and a voluntary choice, and those who wish to donate can sign up to the NHS Organ Donation Register.  

Presumed Consent

The UK currently operates under an “opt-in” system of organ donation, where anyone can choose to add their name to the NHS Organ Donation Register. You can then carry an Organ Donor card and inform your family and friends of your intentions. Currently 31% of people in the UK are registered.

The British Government is proposing to implement an “opt-out” system of presumed consent, in order to boost the number of organ donations. This means that the state has the right to harvest someone’s organs without the express permission of the person. CARE is concerned about this move as we believe that an individual should have the choice as to whether somebody else takes their organs. Donating organs is vitally a personal choice and a gift and should not be open to the state to enforce. Furthermore, there are ethical concerns regarding end of life decisions, for example if decisions to withdraw life sustaining treatment are influenced by organ transplant considerations.

Our Position

Ethical concerns

1) Presumed or deemed consent impoverishes us ethically because it reduces the altruistic notion of gift or donation. Rather than subverting these virtues we should be encouraging them.

2) The principle of consent is of great ethical importance in this instance. We are talking about the right to use parts of a deceased human being, someone made in God’s image.

3) The patient doctor relationship is based on the principle of consent. We cannot change this in relation to how our doctor or health service might treat us after death without undermining the patient doctor relationship more broadly.

4) This proposal raises huge civil liberty questions. One cannot abandon the principle of consent in relation to one aspect of one’s relationship to the state without this forming a precedent that might be revisited as justification for other changes.

5) The evidence suggests that presumed consent does not work in practice. Consider, for example, the experience of countries like Sweden and Brazil.

Practical concerns

Does presumed consent work?

There is insufficient evidence to suggest that opt-out systems work, as countries who have introduced these measures vary considerably in their success levels. Presumed consent was implemented in Wales in 2013, but thus far it has not resulted in an increase in organ donation.

The Welsh Government’s two-year evaluation which was published on 30 November shows that if you compare the resident Welsh donor rate for the 21 months before the introduction of the new system with the 21 months since, far from increasing it has actually fallen from 14.6 donation decisions per quarter to 13.4 donation decisions per quarter. The introduction of an opt-out system has coincided with a significant increase in the number of people opting out of the ODR. Over 180,000 of the Welsh population has now opted out

There are three key limitations to presumed consent:

1.Many wrongly assume that under the current system of informed consent in England only the organs of people who have signed the donation register can be used. This means, they surmise, that if consent can be presumed it opens up a much bigger pool of potential donors. But that is not true. Under the current system of informed consent any organs can be used so long as the deceased has not signed an opt-out register and the family agrees. Indeed, in the 5 years prior to introducing presumed consent in Wales, more donation decisions were made by families in the absence of direction from the deceased (167) than by those who signed the donation register (131).

2.Under presumed consent the family still has to agree to a donation proceeding, both if the deceased has signed the donor register and if consent of the deceased has been presumed. Some might be tempted to say that the family should be forced to accept informed or deemed consent but in practice it is not possible for clinicians to sweep a distraught family to one side and take the organs against their wishes. 21 donations were prevented in Wales last year because the family opposed the donation even though the consent of the deceased was deemed to have been given because they had not signed the opt-out register. This prevented 65 transplants.

3.Not only does the family have to agree in order for deemed consent to have any practical effect, critically the total pool of families who can agree is also reduced.  Whenever presumed consent is introduced, a proportion of the public will always withdraw from donation and sign the opt-out register because they don’t like the idea of the state presuming their consent. In Wales over 178,000 people have withdrawn from donation in response to the introduction of the new system. Before the introduction of presumed consent those 178,000 people were potential donors in the event that they died in an intensive care unit and their families agreed. Under presumed consent their families cannot be asked about donation because the person concerned has opted out.

Instead of pursuing a shift to an opt-out system, CARE is calling on the Government to spend scarce resources on measures proven to work. The truth is that while Welsh donation rates have fallen under presumed consent over the last two years, English donation rates have increased quite notably under the current system of informed consent. Why change a system that is working for one that isn’t working anything like as well?

This is not to suggest that we should settle for the current rates of increase. For so long as there is a shortage of organs we should always work hard to increase supply. However, rather than using its resources to adopt presumed consent, the Government should focus its efforts on working and communicating with families, and helping them through the provision of more Specialist Nurses in Organ Donation. The Nuffield Council has shown that investing in specialist organ donation nurses dramatically increases the number of organ donations. Their research found that the rates of family consent were 68.6 per cent when a specialist nurse in organ donation approached the family, but just 27.5 per cent when the approach was made by other staff without the specialised training.

The key to increasing organ donation

Given the central role of the family – both when the deceased has left no donation instructions and when he or she has – the truth is that the key to increasing donation rates lies with the family, not with the system of organ donation.

This is the central principle that informs the Spanish approach to organ donation, which is worth learning from as they have had the highest organ donor rate in the world over a good number of years. The Spanish regard presuming consent as an expensive distraction and focus their energies instead on working with families to encourage them to donate in the absence of instructions from the deceased, or to honour the donation instructions of the deceased. Interestingly, while we have no evidence to suggest that presumed consent works there is striking evidence that investing in the provision of more Specialist Nurses in Organ Donation (SN-OD) to talk to the families of potential donors makes a huge difference. The Nuffield Council on Bioethics has shown that UK rates of family consent or authorisation were 68.6% when a SN-OD approached the family, but just 27.5% when the approach was made by other staff without the specialised training. 

' Through Christ all things were made... in Him was life, and that life was the light of all people. '

John 1: 3 & 4 (ESV)