Wales: Essay: Truth and Facts Essential in Organ Donation Debate

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http://www.walesonline.co.uk/news/wales-news/2011/09/27/essay-truth-and-facts-essential-in-the-organ-donation-debate-91466-29493793/

Essay: Truth and Facts Essential in Organ Donation Debate
Archbishop of Wales Barry Morgan last week sparked controversy by saying plans for a ‘presumed consent’ organ donation policy would turn ‘volunteers into conscripts’. After the Archbishop defended his view in these pages yesterday, Roy J Thomas, chairman of Kidney Wales Foundation, today gives his view of why such a policy is urgently needed...

One person dies every week in Wales waiting for a transplant. It has been proved a change in legislation to a system of soft opt out will save lives. Britain continues to have one of the lowest organ donation rates in Europe.

A chronic shortage of organs for transplantation has and continues to be one of the pressing health policy issues in developed countries. The demand for human organs in transplantation is increasing despite the efforts of governments and health agencies to support organ donation.

The Blood and Transplant Organ Donation Register is a fine example of making us all feel good when registering but is still not solving the problem.

Research has shown that a soft opt-out organ donation proposal – where organs are taken unless the donor has specifically opted out or families refuse – could increase donation rates by up to 25%. Under this system, let’s repeat, families would still be entitled to prior consultation, and have a right to refuse. There would not – and must never – be any hint of compulsion by the State – to unwisely indicate that the State will own our bodies is wrong.

The system clearly needs change. The Welsh Government is showing leadership while some wish to keep the present law or tinker with the system.

A fear of an anti-donation backlash is one reason why civil servants and health professionals in England have chosen not to recommend dramatic changes to the current arrangements. It feared vociferous lobbying against presumed consent would corrode wider support for organ donation in general. Some in a minority have been swayed by some healthcare professionals who feared public trust in them might be harmed if it was felt – however mistakenly – that the prospect of “harvesting” organs might be a factor in treating some seriously ill patients.

Those are pessimistic arguments indeed. They assume the Welsh public’s propensity to mistrust doctors is extreme and irreversible, and that a concerted campaign by the minority opposed to donation on principle would easily convince the large majority who are in favour. The opposite might also be true.

When Belgium introduced the opt-out system in 1986 its national rate of organ donation rose by 55% within five years. Belgians can take themselves off the register but only 2% have. In Spain, where a similar system exists, there are 35 donors per million compared with just 13 in Wales and 14.9 in the UK as a whole.

As is our experience in Wales, the UK Organ Donation Taskforce – the UK Government committee set up to consider ways to increase registration – found in its fact-finding missions that exposure to all arguments, for and against, often won people around to presumed consent. In Wales some say that an Assembly Health Committee some years ago was against it – this is wrong. The report did not rule it out. Indeed, some influential members were in totally in favour – as are a majority of Assembly Members now across all political divides. Misinformation is unfortunate and the Church in Wales representatives have even started to get in on the act using words like “conscription” and” asset stripping” – conduct described by many patients and families as unchristian.

Let’s hope that the standard of debate when legislation is introduced will rest on the truth and the facts.

Roy J Thomas is chairman of Kidney Wales Foundation

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http://www.walesonline.co.uk/news/health-news/2011/09/21/archbishop-of-wales-attacks-plans-for-presumed-consent-on-organ-donation-91466-29462069/

Archbishop of Wales attacks plans for presumed consent on organ donation
Madeleine Brindley

THE Archbishop of Wales has launched a fierce attack on plans to change the organ donation law, claiming it will turn “volunteers into conscripts”.

Dr Barry Morgan today said people’s organs should be donated to others “as a free gift” and not treated like assets of the state.

In making the comments, in a presidential address to the Church in Wales’ Governing Body, Dr Morgan has become the most high-profile critic of Wales’ aim to become the first part of the UK to move to a system of presumed consent.

The Welsh Government has repeatedly stated it wants to bring in legislation to introduce a so-called “soft opt-out” system, similar to that used in Belgium and Spain, to increase the number of organs available for donation.

But Dr Morgan said: “Although all this is admirable in its intention, I feel a bit uneasy about presumed consent.

“There is, in presumed consent, a subtle or perhaps not so subtle change of emphasis in the relationship between the individual and the state.

“That is, that unless we have opted out, our organs belong to the state and the state has the right to do with them as it wills.

“The implication, by default, is that the state can decide on our behalf. I think that compromises individual rights and freedoms and poses the moral question as to whether the state can make such decisions.

“Is this a legitimate power, in other words, for any state? True, the state will argue such power will only be taken after consultation with relatives but there is a presumption in favour of the state and almost the belief that our bodies are state assets and therefore at the State’s disposal.

“All this at a time when the medical profession is trying to be more open with patients in discussing the choices available to them in their treatment and getting them to make their own choices and be in control of their own lives.”

Switching to presumed consent has been heralded as the answer to the paucity of organs available for transplant – currently one person from Wales dies every 11 days while waiting for an organ transplant.

There are currently more than 280 people waiting for an organ transplant in Wales.

But despite this, figures from NHS Blood and Transplant show a record number of transplants were carried out last year – 3,740 – and the number of deceased organs available for transplant rose by 5%.

The current organ donor system relies on people registering as potential donors and telling their relatives about their wishes, as families have the final say about donation at death.

A “soft” opt-out system would assume everyone is a potential organ donor at death unless they had registered their opposition during their lifetime. But families would continue to be consulted.

Presumed consent has been credited for higher transplant rates in countries such as Spain and Belgium.

But opponents have suggested higher transplant rates can be achieved by investing in facilities and in transplant coordinators, who are able to raise the question of organ donation with families.

Dr Morgan added: “Organ donation surely ought to be a matter of gift and not of duty.

“If one takes organs without consent, on the assumption that by not opting out, a person is tacitly assenting, then this is no longer a free gift to others.

“An organ donation ought to be precisely that, a gift, an act of love and generosity. Giving organs is the most generous act of self-giving imaginable but it has to be a choice that is freely embraced, not something that the state assumes.

“Put more crudely, it can turn volunteers into conscripts.”

A Welsh Government spokesman said: “There is no question of volunteers being turned into conscripts.

“People will be given the option of opting out of donating their organs if they wish, and their families will still be consulted when a death has occurred.

“However, research shows that the Welsh public overwhelmingly backs our proposals.”

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http://www.walesonline.co.uk/news/health-news/2011/09/22/archbishop-of-wales-under-fire-over-un-christian-views-on-presumed-content-91466-29463901/

Archbishop of Wales under fire over 'un-Christian' views on presumed consent
Madeleine Brindley

TRANSPLANT patients have described the Archbishop of Wales' views on presumed consent for organ donation as “un-Christian”.

The Archbishop, Dr Barry Morgan, used his presidential address to the Church in Wales’ Governing Body to claim thatpeople’s organs should be donated to others “as a free gift” and not treated like assets of the state.

His comments drew an angry reaction from patients and medical groups, with the British Medical Association responding to the speech by reaffirming its commitment to the Welsh Government policy, and the chair of one of Wales' leading charity groups saying he was "disappointed" with the Archbishop's comments.

The Welsh Government has repeatedly stated it wants to bring in legislation to introduce a so-called "soft opt-out" system in which patients are presumed to consent to their organs being donated unless they decide to be taken off the register, and where close relatives would still have a final say.

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