Tuesday, 21 May 2013

Gift is the Key to Organ Donation

The Welsh Assembly has been discussing legislation to bring in presumed consent for organ donation. Instead of the current opt-in system, people will have to opt out and they will need to know that they have to do this. The Human Transplantation Bill introduces a radically new relationship between the State and the individual and between the 'donor' and the recipient and, should it succeed, it will mean that, in one part of the UK, the harvesting of organs for transplantation is carried out on the basis of principles that differ from those that apply in the rest of the UK. How many people are even aware of this, I wonder? And how will it work? Imagine the scenario - a young student at a Welsh university has a fatal accident a few days after arriving at university. What is the factor that decides whether they come under the Welsh system or the system operated in the rest of the UK? Do they in fact reside at their parents' address in England or at their university address in Wales? Under pressure of time, who deals with these issues and how?

I spent several years working as a nurse in transplant surgery - kidneys, liver and pancreases - and I know the desperation of patients who need transplants and for whom there is an agonising wait, sometimes of many years, for a well matched organ to become available. Many patients die before they get the chance of a transplant. Families are devastated. Anything we can do to increase the number of organs available for transplantation is urgently required.

But will the proposed new law in fact lead to an increase in the number of organs available? There is a growing body of evidence that suggests that presumed consent will actually lead to a decrease in availability of organs. The Bill has been amended so that organs will not be taken in the face of families' opposition. Doesn't this mean that families who have never fully discussed the issue will be likely to resist any attempt to harvest organs 'as of right'? Isn't it going to be far more productive to create a culture where people are encouraged to discuss the issue and then to make fully informed decisions about donation, ensuring that family members know their wishes? My fear is that presumed consent will lead to a situation where few people bother to think about the issues or discuss them with their families. In the event of a person's death it will then be almost universally the case that families hold back as they are not certain about their loved one's wishes.

There is, then, opposition to this Bill for the very practical reason that it will not increase the availability of organs and will turn out to be something of an 'own goal'.  Surely it would be much better to work on opportunities to educate people to think about the possibility of donation? This could be done by sending out information inviting people to join the register of donors whenever a new driving licence is applied for and whenever people change their doctor. GPs could routinely invite their patients to reconsider their position every five years and could offer opportunities for discussion and education. This would promote informed consent which is the only way effectively to increase the availability of organs. It would also take account of the subtleties of the question. Some organs require circulating blood at the point of removal whereas others do not; it has always seemed to me that there are different categories of donation and individuals should be free to consider whether they wish to opt into all or some.

But the major reason for opposing the bill is that it fundamentally changes the relationship of the State to the individual and replaces the concept of 'gift' with the concept of 'right'. To put it candidly, our bodies, in death, are not simply a source of spare parts that the State has the right to redistribute. If you think I'm overstating the case, read Kazuo Ishiguro's powerful novel Never Let Me Go (Faber and Faber 2005). It's the story of a school whose pupils are destined for life and 'completion' as 'donors'. Whatever side of the debate you are on, it brilliantly and chillingly introduces you to issues about the impact of such a position on both the individuals involved and society at large.  Kazuo's use of language gradually alerts the reader to the sinister fact they are being invited to inhabit a social order that is far from what it seems. Extreme as the book may seem, the underlying premise - that some people are required to supply organs rather than that they freely donate them - is the same whether we are talking about forced 'donation' or presumed (and therefore, by implication, sometimes uninformed) consent to donate.

I have seen the joy of donation - people who have decided to give kidneys to relatives, families who, through their heart-break, have known that their loved one has given life to others. Unless donation is just that, donation, it dehumanises us. When it is the true gift of life, it makes possible further acts of generosity and better enables the psychological freedom of the recipient. I very much fear for a society in which consent to utilise others' organs or body parts is presumed or seen as something normally to be expected.

You can watch the debate in the Welsh Assembly on 16th April 2013 at
Never Let Me Go, Kazuo Ishiguro is published by Faber and Faber, 2005 and was shortlisted for the Booker Prize 2005
A View from Rural Wales Blog
Antoinette Sandbach's (AM, Con.) Blog's-proposed-human-transplantation-bill

No comments:

Post a Comment