Monday, October 27, 2008

The Launch

Been to Llantrisant today where we were entertained by the men who make up Mynyddislwyn Male Voice Choir. They sang 'Fly me to the Moon', My Way', You raise me up', and 'Rhythm of Life'. Carys Wyn conducted. It was all rather like being on the set of Con Passionate, a highly rated series on S4/C in which Sian Cothi conducts a choir made up of the best of Welsh cultural testosterone.

Purpose of the visit was to help launch a Bowel Cancer Screening Programme in Wales. There was quite a 'Montgomeryshire' feel to the launch today. Leader of the Programme is Hayley Heard, who lives in Pontdolgoch, near Caersws. She had the task of explaining the whole thing. And I had a rather higher profile than I expected, which I must admit I enjoyed. My job was to offer a 'Patient's Perspective'. There were lots of media about. It can't do me any harm, politically speaking, to appear on all the main TV news programmes.

The launch won massive publicity. It was a terrific idea to hold it on the first day of half term. There was nothing going on down in Cardiff Bay, and the media were free to roam. I was really pleased about this. There's a bit of 'Esprit de Corps' amongst people who have experienced Bowel Cancer, and I'm always willing to help out - even if there is no camera about.

The one thing I'm not keen on is use of the word 'poo' when referring to faeces. It seems a bit too childish. It will be OK for little Ffion when she starts to speak, but not for we grown-ups. Its a bit like saying 'Binky' instead of 'Penis'. When I hear the message 'Put your Poo in the Post', I cringe. Which probably means it will be a great success. I hope that these Home Test Kits are used and returned by men in particular (women will do it anyway). There are hundreds of people living normal lives in Wales as I write who have a life threatening tumour developing in their colons - about which they are entirely unaware. These kits might bring these tumours to light while they are at their most treatable.


Anonymous said...

Glyn thought you would want to see this it was posted
on my post on consent
Many attempts have been made to increase the supply of organs: governments run publicity campaigns that extol the virtues of transplantation; donor cards make it easy to identify volunteers; bodies such as Eurotransplant have been set up to co¬ordinate the exchange of organs and encourage transplantation. But none of these measures has worked. The supply of transplantable organs is still erratic.
`Presumed consent' is controversial. Its opponents, and there are many in the medical profession, believe it undermines basic notions of civil liberty. In Spain, for example, doctors have simply ignored the opt-out legislation introduced by their governments, their desire to respect the dead and not to offend distressed relatives putting a brake on attempts to use the law to increase the supply of organs.
On Sunday 28 July 1991, Christophe Tesniere was cycling home in the northern French town of Dieppe when he was knocked off his bike by a passing motorist and suffered a crushing blow to his head. The nineteen-year-old was rushed to the local hospital with injuries so severe that his breathing failed. To keep him alive, doctors placed him on a ventilator and three days later flew him sixty miles by helicopter to the University Hospital of North Amiens, which is better equipped to care for patients with serious head injuries.
As well as being the department's unit chief, Tchaoussoff was also the president of the northern section of France Transplant and, once he had broken the tragic news to the Tesnieres, he asked them whether Christophe had ever expressed the desire to be an organ donor. `We had never discussed this idea,' says Alain. `Why should a young man who is in good health think about his death? Why should he expect to die in five minutes by crossing a road? So we did not know.'
Tchaoussoff then asked Alain and Mireille their opinion of organ donation. Legally, due to the opt-out law, there was no need for Tchaoussoff to make this request – but, as a matter of courtesy, doctors tended to consult relatives if they could find them. Alain Tesniere had always supported organ donation, and had recently been moved by a TV programme about a young boy on the waiting list for a transplant, so he raised no objections.
Mireille, however, wanted to know which organs would be taken and says she asked for reassurance about the extent of the disfigurement that the removals would cause. Her son's body had already been badly damaged in the accident and she didn't want to add to the mutilation. She says the doctor asked for four organs: Christophe's heart, his liver and both his kidneys and then he assured the parents that their son's body would otherwise be left alone. Mireille was content with his explanation and the parents gave their agreement for the doctors to remove four organs.
The trouble began with an accounting error. The Tesnieres received a bill from the University Hospital of South Amiens (where Christophe's organs were removed) asking for 300 francs to cover the cost of their son's hospitalization. It should not have been sent to them and they received an apology. But the damage was done: on the accounting form was a list detailing which organs had been taken. It was in code but its length puzzled them. The Tesnieres had agreed to the removal of four organs, but the list contained more. They asked for an explanation and found that surgeons had not only taken the heart, the liver and the two kidneys, but had also removed veins and arteries from Christophe's legs and, worst of all for the distressed mother and father, both of his eyes so that his corneas might be used to restore someone's sight.
Christophe Tesniere's body was still in the hospital mortuary when his parents discovered the extent to which it had been emptied of its organs. Alain's visit to the hospital to say goodbye to his son before he was buried turned into a nightmare when he saw that Christophe's eyes had been replaced by what he describes as oversized glass ones. `When I think about Christophe,' he says bitterly, `I can't remember him as he was when he was living. It's a frightful thing not to have a memory of my son. I remember his eyes, those terrible eyes. It's like a second death.'
Mireille was just as angry at what she saw as a violation of her son's body. `They stole our memory of Christophe,' she says. `We had implicitly refused to donate his eyes. For us they were the symbol of life, muck more important than any other organ.
The Amiens affair, as it came to be known, blew up into a major row. The Tesnieres took their distress to the press, gave endless interviews to the newspapers and on television. They wrote to the health minister asking for an enquiry into organ transplantation. Alain Tesniere even wrote a book. The effect of the publicity on the kidney-transplant service was disastrous.
`Immediately afterwards, there was a dramatic drop in organ donations of 20 per cent,' says Dr Philippe Romano, at L'Etablissement Français des Greffes, the organization that has now replaced France Transplant. `This has not picked up, it has still dropped by 10 per cent. It was obviously not just due to the Tesnieres, but this dramatic story put a spotlight on this problem. In people's minds, there has been a loss of confidence with medicine in general and with medical people.'
The Tesnieres also consulted a lawyer who discovered that the doctors who removed their son's eyes might have broken the law, despite the existence of France's `opt out' system. The reason was an oversight in the drafting of the Caillavet Law that introduced the presumed consent system of organ donation in 1976. This law did indeed permit the removal of organs from a brain-dead body without the need to consult with relatives. But it said nothing specifically about the corneas – and there was another statute dating back to 1949 called the Lafay Law which said that corneas could only be removed if a dead person had agreed to this in writing in their will. The cornea was an exception to the `opt out' system. So in 1992 the Tesnieres decided to bring a prosecution against the doctors, charging them with theft and violation of their son's body.
`There was a contradiction between the two laws, a legal gap,' explains Professor Didier Houssin, the director-general of L'Etablissement Français des Greffes. `It led to the ability to build a legal case ... and it also showed the limits of what is tolerable in terms of multi-tissue harvesting. There has been a tendency to harvest many organs and tissues, to think: "While we are here we will take everything." it is an easy option but it has very negative aspects. It is a practical attitude which can be perceived by outsiders as a lack of respect, even if that wasn't the intention of the doctors.'
Tchaoussoff says the Lafay Law was written before people's bodies could be kept alive artificially on ventilators. He believes it does not apply to brain-dead bodies and, given the existence of the opt-out legislation, he does not accept that he overstepped the mark. `If I didn't mention taking out Christophe's eyes to his parents, it's partly because it is not always technically possible to do it,' he says, `but also because it is a particularly difficult thing to speak about with families.
The damaging row also helped to bring about a fundamental reassessment of the French approach to organ donation. The 1976 Caillavet Law was a product of the political philosophy current in France in the 1970s in which the family took second place to the needs of society. Patients in need of organs were given a higher priority than the feelings of the families of potential donors. `If the family happened to be present and expressed the deceased's opinion, saying no or yes, that was good,' says Professor Houssin. `But it was not obligatory for the doctor to approach the family. This was the 1976 law.
The idea was to avoid imposing the burden of the decision onto the family.'
The Tesniere case also highlighted a major problem with pre¬sumed consent: there was no practical, foolproof way of making your views about organ donation known during your lifetime. `If someone wanted to prevent their organs being taken,' Houssin continues, `they had to sign a register at the entrance of the hospital. In fact, this was practically impossible for if you arrive at the hospital brain-dead or nearly brain-dead, you are in no condition to sign anything. This hadn't been clearly thought out.'
The Catholic Church also waded into the fray, letting it be known that it felt that the balance between the needs of society and the rights of the family had swung too far in favor of the community. `The family should be approached – this was the popular feeling expressed by various associations and much of public opinion as well,' explains Houssin.
In July 1994 the French parliament responded to public concern by abandoning the Caillavet Law in favour of new legislation, the Bioethics Law, which tilts the balance back in favour of the family and, in so doing, has seriously undermined the country's opt-out system. `The idea behind it,' says Houssin, `is that the human body should be respected and protected, that respect for the human body is related to the dignity of the human person.'
The new law established a national computerized register to allow people who want to opt out to say no. It also forces doctors to approach the families of potential donors, not to ask for the family's consent but to double-check what the dead person's wishes were. In theory France still has an opt-out system; in practice, fears about its corrupting effect on doctors' approach to the dead have so weakened it as to make it unworkable. After the Amiens affair, no doctor is going to risk taking the organs from a potential donor if their family opposes the idea. `If the family says no, you can't do anything,' says Professor Houssin. `Presumed consent has been seriously attenuated.'
The Tesnieres, at least, will be pleased at this news: their once generous support of organ transplantation has been fatally undermined by presumed consent. They are now such bitter opponents of spare-part surgery that Alain Tesniere has written the following inscription in his social security card: `In memory of my son Christophe, I forbid any removal of organs, tissues and other remains from myself and from my son Oliver who is a minor.'
Rather die if I ever needed an organ,' he says. `I think that a person is unique and that we shouldn't change organs from one person to another. Human beings are not a collection of organs like a car. An organ is part of a person's identity. I prefer to die because I know how doctors practice in France.'
Mireille is just as hostile. `At the time I thought it was important to help someone to live,' she says. `But if I had known then everything that I know now I would have lied and told them that Christophe was opposed to organ donation. I think it is inhumane. The doctors took everything they could from Christophe's body and I have to live with that even today.'

28 October 2008 21:47

Glyn Davies said...

VM - a sad tale. The reality is that organs will be removed from people who do not want it to happen - but have not sought to register an opt-out. But when I speak to those who work in the organ replacement field (Kidney Foundation Wales) there is an entirely different outlook. Its a difficult issue - even befor econsidering the moral aspects of it.