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From The Times

April 14, 2008

Ethics? There's only bureaucracy

A mother and daughter's sad tale: we should be allowed to give our organs to those we love

William Rees-Mogg

This is the story of a grandmother, a mother and a granddaughter. The grandmother, Rachel Leake, is 39 years old. She suffers from a kidney condition, which requires a transplant. The daughter, Laura Ashworth, 21, died recently in the intensive care unit of Bradford Royal Infirmary, after an acute attack of asthma. The granddaughter, Macie, aged 2, lived with her mother and grandmother in a farmhouse near Bradford; she is now being cared for by her sick grandmother.

Before the daughter's fatal illness, Mrs Leake's sister had offered to provide a kidney as a living donor, and that arrangement may still go ahead. However, Laura Ashworth had told her mother that she wanted to help her if the time came. There is apparently no dispute about the daughter's wishes. Apart from anything else, if anything happened to the daughter it was the grandmother who was going to look after the child.

When Laura Ashworth died, her body parts were removed and used as transplants. Despite her known wishes, the kidneys were not given to her mother; one went to a man in Sheffield and the other to a man in London. Mrs Leake remains on the waiting list for a kidney.

And the decision on allocation was taken by the Human Tissue Authority, which decided that the mother was not to receive her daughter's kidneys after her death.

The daughter had, in fact, joined the NHS Organ Donor Register, but she had not formally recorded her wish to donate to her mother, though she had expressed that wish to her mother and to other people. In her last day in intensive care she was unconscious.

The decision on allocation was taken by Adrian McNeil, the chief executive of the Human Tissue Authority. He told The Times that he did not wish to comment on individual cases. However, he argued that the authority was holding an ethical review of its policy, and while the review was in progress similar requests should be turned down as a matter of course.

The body that actually administers the Organ Donor Register is UK Transplant. It has offered its condolences to Miss Ashworth's family - which must have been a great comfort - and its spokesman went on to make a crass observation that it should not be possible for anyone to “jump the queue” to receive a donation.

Inevitably, time is involved in all transplants. Nevertheless, the family put their case. In an ordinary matter they could have gone to court to ask for the daughter's last wishes to be respected. They did go to their Member of Parliament, Gerry Sutcliffe, and Mr Sutcliffe took the case to health ministers. The family also spoke to the transplant co-ordinator, who was in tears. She tried to get her bosses to agree to the transplant going straight to the grandmother. They would not shift from their refusal.

Although Mr McNeil accepts that the authority has the power to allow specific requests from donors, he personally and repeatedly refused to allow the daughter's request. The only reason he has given is that such a decision cannot be made until the ethical review committee has reported, a purely bureaucratic reason. The daughter's wishes have to be refused because they are not on the agenda.

It is a great pity that there was no time for the issue to be taken to court. There seems to be no doubt that, in English law, the daughter could have chosen the beneficiary of her donation so long as she was alive. Most living donors do, in fact, give organs to help people with whom they have a close connection. In law, we all own our own organs so long as we are alive.

Apparently the Human Tissue Authority effectively nationalises our organs if we consent to their use after our death. It does have the authority to follow our wishes if we want our organs to go to someone we love, but it feels free to override our wishes and give them to someone else. A judge may have upheld the Tissue Authority's view of the law, or he may have held that their use of their discretion was unreasonable. There was not time to test the question.

I was surprised that Mr McNeil referred only to the need to wait for the ethical review. Organ transplants are also under active consideration in Brussels.

In May of last year the Commission of the EU published a staff working document under Article 152 of the Amsterdam Treaty. The paper calls for “An appropriate and flexible European legal framework... under community binding legislation”.

Any legislation that may be adopted would come under qualified majority voting. Mr McNeil must be conscious of the impending European regulation.

Certainly, the European Working Document highlights some of the issues in this tragic case. There is a paragraph that calls for “maximising organ procurement” under “deceased donor management”.

The document discusses the organ shortage - a real medical problem. There are growing waiting lists; there is increased demand; there is a limited donor pool.

Miss Ashworth's kidneys could have been regarded as a scarce European resource.

Perhaps the key paragraph is the one that states: “Organ transplants are subject to time pressure. The process from the procurement to the transplantation should be done in a few hours in order to preserve the organ's viability. As part of this administration, an effective allocation system is essential.”

Apparently, the grandmother's need did not fit into the “effective allocation system”.

Both the European Commission and the Human Tissue Authority should remember the working document warning: “Any ethically doubtful activity would undermine the trust of the population in the donor transplantation process. A loss of trust can seriously lower the donation rates.”

Refusing to honour a daughter's dying wish to help her mother is an “ethically doubtful activity”.

This story has been badly distorted by the writer.

No one claimed that organs "belong to the state", nor acted to override the wishes of the deceased. In fact, they acted to uphold those wishes.

Organs are allocated strictly by medical need, except that a patient may "direct" a donation to a specific person. This patient gave permission for organ harvest, but did not direct the donation to her mother. Later she stated she wished to do so, but the hospital had no record of this. After she died, her mother - the recipient in need - claimed her daughter had wanted a directed donation. No one accuses her of lying but they need proof. A court or ethics committee could have heard witnesses to determine the daughter's true wishes, but there was no time. So they acted under the policy for general organ donations - as the daughter had agreed in writing.

There was no bureaucratic plot. The rules require clear proof of patients' wishes, and they had none. However sad, they acted rightly.

Kevin T. Keith, Brooklyn, NY, USA

So that about concludes the donation business since most people (me included) are going to say NO NO NO - to any and all of these august bodies and self-styled important people that can overrule our wishes

Sean, Coventry, UK

Sadly - I dare say tragically, as for once that much overused word is entirely appropriate - government is seeking to monopolise ethics. The truth of the matter, which we all know in our hearts, is that ethical decisions are taken by individuals. What Mr McNeil did was unethical, but he need not worry about that; he has an ethics committee to handle his moral dilemmas for him. All he has to worry about is "doing the appropriate thing".

Tom Welsh, Basingstoke,

Doctors have an ethical code; this obliges them to treat those who are in most need and stand to benefit most.
Thank goodness there are still people with a functioning conscience and courage to stand up against the baying of the mob.

BrummyDoug, Birmingham, England

McNeil should resign. He should resign because his conception of the system is too narrow. In refusing the requests of Ms. Ashworth and her family he has failed to recognise that the system depends, not on the inflexible and "objective" application of rules but upon the trust and goodwill of potential donors. How many people, upon hearing this story, will have torn up their donor cards? How many patients awaiting transplants will not get them as a consequence? How many will die? And if the system is made "opt-out" rather than "opt-in" how many will choose to opt-out as a consequence of such injudicious decisions?

Roger C, Kamloops, CANADA

1) Organ donation is the gift of a person and their family. To receieve donated organs is a privilege, not a right. The moment you die you do not become personally responsible for saving those unlucky enough to need transplants.
2) A living gift of an organ within families is a familiar concept: to withdraw this purely because the girl was no longer able to express her decision in a beaurocratically approved way is appalling and the family will live with the damage of this forever.
3) People are never 'parts' to be allocated. I admire the family for allowing their daughters organs to be donated at all considering the way they have been treated.
4) Organ donation is sadly becoming like many other things in this country - something that was successful and well thought of until government and beaurocracy waded in and thought they could do it better. I and my family are now ex donors.

Helen, Kettering,

I have two points to make. One reason why there is a shortage of organs for transplant is because people do not trust the people running this country. That is from the ethical point of view. I don t need to say why. Everyone of a certain age knows, but it cannot be discussed. The other point is that this is a good time to point out that the bureaucrats in this country are just as bad as any in Europe.

Henry Percy, London, UK

After a previous refusal by the authorities to accept organs on terms I took the simple step of stopping being an organ donor - your organs - your property - a matter of simple decency and respect for the dead. But then since when did any bureaucrat or socialist have either.

edward green, Upminster, England

As she had made known her wishes to give a kidney to her mother, and it was given to somebody else, then surely it was taken without consent? And they want an opt-out system in place for donations? This is another Alder-Hey scandel. How can anyone trust these organ harvesters? I think they will have trouble now recruiting people as donors, or persuading families to donate after loved ones have died. It will now be far more difficult to force the population to accept an opt-out system.

Greg, Surrey,

I'm not sure of the position in English Law, by in Scots Law it would be innaccurate to say that "...we all own our own organs so long as we are alive." Bodily parts are considered quod res nullius, ie not capable of being owned.

And to the poster who termed the author "Sir William", he is in fact Lord Rees-Mogg. Which just goes to show they'll put anyone in the House of Lords nowadays.

Jonathan M Smith, Edinburgh, UK

Has anyone asked how the recipients now feel? Are the bureaucrats are doing their everything possible to conceal who they are so that can't happen? Have they even been told themselves what happened?

If this is as I suspect, such desperate concealment is a fair indication of where the rights and wrongs lie.

Alan Wilkinson, Russell, New Zealand

McNeil? Another Scot puffed up with his own importance?

This decision will adversely affect many people as potential donors tear up their cards rather than risk putting their families through the heartless bureaucracy typified by this ... automaton.
He should be ashamed. But then, as a bureaucrat, he won't be.

Tricia, Sussex, uk

The State always knows best. Sign up for nothing, give them nothing, they will always abuse your goodwill

John Ledbury, Kings Lynn, England

No, choice should not normally be permitted. But in special cases the regulator should be allowed to apply discretion.

Of course, this would require the regulator to take responsibility for the decision. In the UK's disastrous blame culture the regulator would be well advised to say "No" every time, so as to avoid placing themselves at risk.

Brian Eave, Pembroke, UK

The point of view of Ian Kemmish reflects the tragedy of modern Britain.
Family values and cohesion count for little.
The state, with all its authority and bureaucracy, is everything.
God help us all.

Minnie Ovens, London, UK

The mother is alive and well enough to give interviews. Now, so is someone else too.

I've got five pounds here that says that, had the organ been given to the mother and someone in acute clinical need had died as a consequence, Sir William would have been writing a very different column.

Clinical need is the only sane basis for distributing available organs. If, as a result of the need to sell newspapers, some other strategy were adopted, that would be a tragedy indeed.

Ian Kemmish, Biggleswade, UK

When you have big Government, the fountain head, then rules always replace common sense, modesty and compassion. This tragic story sits atop the numerous stories of the denial of treatment ordained by specialists. The brashness of the state is self evident when the humble parking fine is issued by a bureaucratic system has no competence to deal with extenuation circumstances and challenges are just a cost to the. How can a Government have compassion? We may hear leaders talking in the emollient, tear jerking fashion about this inhumanity and that, about the unfortunates, the sentiment is then tossed to the apparatchiks and turns into a stark rule. When a council denies a developer rights to build we know that on appeal nothing will stop the development, no matter what conditions the local inhabitants have made. The system has become mechanistic, while also being intrusive and omnipotent. The bigger the State system then the further we move from respect and humanity.

Malcolm Turner, Alsager, England

You obviously can't pick who gets your organs otherwise you get the case of people stating that only family members can receive the organs, or only white people or only Jews, or etc.

The whole point is that organs should be prioritised for the person most in need of the organ, not who you in your limited knowledge pick.

Of course if you want top pay to have it done privately then its up to you, thats why you pay.

Russ, Aberdeen,

The question that concerns me is "Why, given the choice of truth or fiction, do people consistently choose the fiction?"
Consider if a person is murdered next door you have the option of verifying that, but if the murder takes place a thousand miles away you must rely upon whatever information systems exist to verify that. This increases opportunities for distortion exponentially.
Technology creates the false impression of intimacy. What is more is often there is a two pronged attack on truth. The rewards are general, the punishments are specific. That's a byproduct of systemization of effort.
Fascism loved radio because it gave them a chance to lie without contest and conversely persons who were "removed from consideration" could easily be denied access to telling their story.
It's not the apocalypse. People learn in time to differentiate system truth from actual truth, but by then technology develops new illusions for the use of the great god of getting on

glenn schaefer, holbrook, ny/ USA

Well I wont be putting my name on a donor list any time soon not if this is the way i am going to be treated, I would rather all my organs where burnt, than have to put my family thought a an already lost fight with beuracrace.

MR W Jones, Liverpool, England

Given that the daughter's wishes were known, the decision that was made was morally indefensible, and amounts to theft, at the very least. Mr MacNeil should be sacked immediately. This case will do immense damage to transplants in the UK,

Martin, Newmarket, Suffolk

I have just torn up my donor card...

Danny, Leeds, UK

The Human Tissue Authority has to make decisions each and every day on the allocation of donors. As such it has the enormous responsibility to effectively decide whether people live or die. Every decision they make is an ethical dilemma. Unless we understand what it is to make those decisions, I don't believe we are in any position to make judgement calls on what they have done in one isolated case.

Were the kidneys used to save two people who were on the verge of dying? If so, would it have been ethical to let them die in order to save one person, who, while ill, does have a willing donor? I don't know the answer to this question, and I don't know the detailed facts of the case, so I am not in a position to judge the behaviour of thos involved, and neither is anyone else who gets all the information on it from the media.

Martin, Bristol,

Presumably the families of the men in Sheffield and London, whilst profoundly sorry for the situation of this woman, are also profoundly grateful that their own loved ones (who will have been much closer to their last chance than Rachel Leake) now have their much-needed transplants. Her daughter's kidneys did not go to waste, simply to the place that they were most needed. Hopefully her turn will come.

Alex West, Warwickshire,

This story has put the seal on my decision not to carry a donor card. Who do they think they are? Carry a card and your body belongs to them the moment you die? Give me a break.

Peter Ryder, Middlewich, UK

Hi,
Ethics; Aristotle whose endeavours may be measured by the enormous impact on western moral philosophy commented in Ethics Are the dead affected by the fortunes of those who survive them ? Organ handling has become a shady business. This is exemplified in Carla Del Pontes, a Chief Prosecutor of two United Nations international criminal law tribunals new book where people were systematically liquidated so as to sell there organs. Not being allowed to give organs to those we love ethically amounts in the case you mentioned to grave theft by the Human Tissue Authority and addresses serious duets on the system.
Regards Dr. Terence Hale

Terence Hale, zandvoort, Holland

That? Is disgusting. Mr Macneil should not keep his job beyond close of play tomorrow afternoon. Apart from any consideration of humanity and good sense, it will discourage other possible donors from allowing their organs to be used unless they are used for their own family. The optics are awful. Hiding behind the 'ethical' smokescreen shouldn't help this guy at all. And what's worse, there is no way to make this mess go away. The organs have been transplanted. The poor grandmother still needs a kidney. Dreadful, the whole thing.

isabella Reyes, toronto, canada

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William Rees-Mogg

William Rees-Mogg has had a distinguished career with The Times and The Sunday Times. He was Deputy Editor of The Sunday Times before becoming Editor of The Times in 1967, a position he held until 1981. He was made a life peer in 1988. Since 1992 he has been a columnist for The Times, writing on a variety of issues. He has also been chairman of the Broadcast Standards Council and British Arts Council