Friday, 21 May 2010

LLTGL's stance on presumed consent.

Here at LLTGL, the question often arises as to why we are not actively pushing for an opt-out system for organ donation. This is a brief explanation of opt-out and where we stand on the issue.

What is opt-out?
An opt-out, or presumed consent system, presumes that everyone wants to donate their organs unless they have stated otherwise. As it stands at the moment, it is presumed that you do not wish to donate your organs unless you state otherwise (i.e., sign up to the Organ Donor Register). If you have not signed the Organ Donor Register your next of kin would need to be consulted as to what your wishes may have been, should you ever be in a position to be an Organ Donor. Various transplant-related groups are pushing quite strongly for the UK to change its system to one of presumed consent.

What is LLTGL's stance on it?
LLTGL are not currently campaigning to change the UK system to one of presumed consent. This is for a variety of reasons.

At first glance, there is reason to assume that changing to an opt-out system would solve the organ shortage in the UK - though on closer inspection it is much more complex than this. The current Transplantation system in the UK is undergoing a huge overhaul, triggered by the release of the Organ Donor Taskforce report in January 2008. The report identified 14 key points within the system which need attention and reform, and started working on these immediately. One of the key points identified is infrastructure; we do not have the capacity to deal adequately with increased levels of organ donation. It is vital that this key point is one of the first to be rectified, and steps are already underway to improve things. You can read the full report here.

A major concern for us are the myths and misconceptions which surround Organ Donation. Until people are better educated we do not believe that radical changes to the law would be effective as people would still be making decisions based on erroneous information.

One of the leading countries in the world as regards Organ Donation rates (relative to population) is Spain. Spain does have an opt-out system, however Dr Rafael Matesanz, President of the Spanish National Transplant Organisation, states that the legislative shift to presumed consent is not what improved their donor rates:

"During the early 1990s we had a 30% refusal rate, at the moment it's about 15%," Dr Matesanz says. "Many countries try to increase organ donation through legislation. But a change to presumed consent doesn't improve the donation rate". (Read the full article here.)

If the UK changed to an opt-out system, it would be called a "soft" system, where despite the premise being that it is assumed the person wanted to donate their organs, the family would be asked whether they would like donation to go ahead. The family refusal rate in this country is currently 40%, and it could be the case that this would rise since the loved one would not have made an active move to join the Organ Donor Register, leaving the family less certain of their wishes.

For all the above reasons, we feel it is important to focus on improving the current system through attention to infrastructure, education, funding and staffing, before considering any radical changes in UK legislation.


Anders said...

Trouble is, if you look at countries with the highest rate of organ procurement they all have a form of 'opt out'. Most of Europe has 'opt out', Britain doesn't and has a low rate of organ procurement.

As you stated, the UK needs infrastrucutre change, that too is what Spain need to make their 'opt out' system worthwhile. The point is that the two things together is optimal.

As for the results of whether we had a 'soft' opt out, what should be said is there can be a variation in what 'soft' means. For example, we have 'opt out', but process for procurement(as is demonstrated in hte US) has altered to enhance the process of procurment. Plus, whilst the 'soft' option discussed may not bring in as good results as one would hope, alternative arrangements for the 'soft' option could produce better results. Therefore, my point is, you could support a 'soft' version, but just not the one touted. Afterall the aim of LLTGL is to make sure as many people who need organs get them.

There is a basic economic principle, if you have access to more organs, you can(with the right infrastructure)provide more organs.

The problem I think lies with a lack of a desire to create a cultural change within the UK, this despite 90% being in favour of donating. As already stated, Europe does it, why don't we see the light? Year after year millions are spent on campaigns that achieve little. In the meantime many people die.

'Opt out' doesn't take away your rights, neither will doctors choose to let you die to save someone else. Those are both arguments I think LLTGL agree are rubbish and the latter fear mongering.

I could go on. Sorry for disagreeing LLTGL, but we need results.BMA and various of groups, bodies and parties agree too. I think your decison here is wrong or at least not proactive enough, too much fence sitting and not pushing with the consensus of the UK that organ donation should be the norm, not the exception.

LLTGL said...

Thanks for your comment Anders, we appreciate you sharing your opinions.

There has been a lot of research about exactly what makes other countries have better procurement rates (by this I am assuming you mean donors pmp?) – did you know, for example that Spain has something like twice the number of people (pmp) dying in circumstances that might permit them to become donors? The full reasons for this are not entirely clear but it is felt that the rules around motorcycle safety might be part of this.

In fact at the recent BTS conference the opening speech was one by Chris Rudge who showed the ‘conversion rate’ (a rough but fairly descriptive word for the number of people who are dying in circumstances that might permit organ donation versus the number who are becoming donors). In this instance, whilst there is room for improvement (which we of course are campaigning about and working on), the UK are not doing too badly but of course the refusal rate is a key factor. In order to make a significant difference we cannot just rely on that increase in ‘conversion’ rate but major infrastructural changes are also required so that increase in donations translates into an increase in transplants.

We also believe that whichever option might be taken on an ‘opt out’ system it would be extremely problematic ethically to enforce it in the face of family opposition – would we really want to try to insist that a medical team physically remove a donor to surgery over the protestations of their family (which I am sure would the surgeons would never agree to)? What all of those of us involved with Organ Donation want is for people to give gifts of their own free will, but that they should have the education and knowledge to take a reasoned decision. We at LLTGL aim to work so that people do think about organ donation and discuss it with their families so that whatever the circumstances the family are comfortable that it is the right thing to do at a very stressful time but also to look at the wider agenda.

In order to support this agenda we are not just working on our own awareness campaigns, speaking engagements, media stories but also with other charities that promote Organ Donation, transplant professionals and industry as well as with NICE. More information on our involvement with these groups will be released in due course. So, I can sincerely say that for us we are taking every opportunity to increase Organ Donation and not taking ‘the easy way out’.