Providing 'spare part' babies

Women whose babies develop fatal defects in the early stages of pregnancy will be given advice on going ahead with the birth so the NHS can harvest the babies' organs, according to the Mail on Sunday.

Many mothers opt for an abortion after being told the child has no hope of survival once born. Now, the newspaper claims, mothers will be supported to have the baby at nine months so the child's organs can be taken for transplant.

Speaking of obtaining organs from newborns, transplant surgeon Niaz Ahmad, of St James University Hospital in Leeds, said "We are looking at rolling it out as a viable source of organ transplantation nationally."

At the moment, doctors will not raise the issue of donation first with expectant mothers, but wait for the women to approach the NHS themselves. However, that could change, Mr Ahmad is reported to have said.

A lead nurse has been appointed to co-ordinate efforts to educate NHS staff about talking to parents about such a sensitive issue.

In some cases, where donation had been agreed, babies could be certified brain dead, but their bodies kept alive by artificial ventilation, so organs removed would be fresh and have more chance of successful transplant.

I have previously expressed the view that brain death is not in fact death and donors would still be alive when the organs were removed.

Dr Trevor Stammers, lecturer in bioethics and medical ethics at St Mary's University College, Twickenham, said "It would be frankly abhorrent if transplant doctors were to ask women whose unborn children have been diagnosed with severe defects to let their baby go to term for the sole reason that its body can be raided for its organs.

"Mothers electing to carry babies with such severe defects to term - because they would love the child for as long as it should live - have, up till now, often been pressured to abort anyway. They have been regarded as foolish to continue the pregnancy. 

"It is concerning that mothers will now be encouraged to go to term with the express intention of the  child's organs being taken. What happens if they change their mind once they see their newborn son or daughter?

"It is a ghoulish suggestion. The concept reduces the baby to nothing more than a utilitarian means to an end - a collection of spare parts - rather than respecting life for its own sake.

"I know those organs can potentially save the lives of others, but at what cost to our humanity?

"The integrity of transplant medicine has already been compromised by using organs from euthanised adults. Raiding the bodies of children born only for their organs will further tarnish the profession."
             

Taking the 'informed' out of consent

The Welsh Assembly has stood the word "donation" on its head. Last night it voted for an "opt out" system of organ donation.

To date in the UK there has been an "opt in" system. Organ donors volunteer to be placed on the organ donor register. But if you have lived in Wales for 12 months and you do not carry a donor "opt out" card, your body is no longer your own. From 2015 you will be presumed to have given consent, and your organs may be taken for transplantation.

The move is an attempt to increase the number of transplantation organs available. There is pressure for similar legislation in England and Scotland.

Said Joyce Robins, of Patient Concern, "Everyone knows the absence of refusal is not consent. Pretending that it can be is dishonest and disrespectful. Provision of a right to opt out is a smokescreen. 

"Assurance that every citizen would hear of the new law, understand it, realise its implications, grasp how to opt out and get around to doing so - if they wish - is pure fantasy. Silence should not amount to consent."

Hearts, livers and pancreases for transplantation are taken only from patients who have been diagnosed brain-stem dead. Such a patient is breathing and his or her heart is beating. She can digest food, urinate, and can develop bed sores. If she is a pregnant woman, she can bring the baby to term. I do not believe that brain-stem death is in fact death, but rather an excuse to take the organs.

Doctors would say they are ending a life - a strange term to use for someone they say is dead already - to save the lives of others.

The end does not justify the means.

Hearts, livers and pancreases for transplantation are taken only from patients who are breathing and whose hearts are beating. Organ donors and their next of kin are given to understand that life support - a ventilator - will be turned off and the organs then removed. In fact, the organs are removed and then life support is turned off.

Many doctors do not give an anaesthetic when the organs are removed. To do so would be to admit the patient is alive. There is a violent physical reaction, but doctors say the patient is unaware. Complete unawareness is difficult to prove.

The fact that potential organ donors and their next of kin are not told that donors will be breathing and their hearts beating when organs are removed is unethical and immoral.

Another slippery slope?

I  have written here and here about my concerns regarding organ donation.

The only hearts, livers and pancreases used for transplantation are taken from donors whose hearts are still beating when the organs are removed. The donors used to provide organs have been certified as brain-stem dead. They are still breathing; their flesh is still pink and warm; they can process food and drink; a child certified as brain-stem dead can grow to sexual maturity; a pregnant woman certified brain-stem dead can maintain a healthy pregnancy. I do not believe that brain-stem death is in fact death.

Says Dr D. W. Evans: "The basis upon which a mortally sick patient is declared 'deceased' - for the purpose of acquiring his or her organs for transplantation without legal difficulties - is very different from the basis upon which death is ordinarily diagnosed and certified and that highly relevant fact is not fully and generally understood." And again: "The uncomfortable fact is that the brains of the so-called 'brain dead' are not truly and totally dead and the diagnosis does not exclude the possibility that some donors may retain or regain some form or degree of consciousness during the surgical removal of their vital organs. We just do not know."

What's more, potential organ donors and next of kin are led to believe that life support will be switched off and then the organs removed. That they are not told that the organs are removed before life support is switched off is unethical and immoral.

I do not object to people donating their organs for removal after their death if they wish to do so. The end, however, does not justify the means.

Currently there are more sick people wanting organ transplants than there are organs available. In an attempt to deal with the shortage, the Welsh Government is proposing to bring in legislation according to which all people living in Wales for longer than six months, including prisoners, tourists and students, will be deemed to have given permission for their organs to be taken for transplant unless they have specifically registered their objection. While it is needful now to opt in to the organ donor system, people then will be deemed to have given permission for their organs to be removed unless they have opted out.

The authority says that families will be consulted before organs are taken, but there appears to be no legal guarantee that organs will not be taken if families object.

Critics say that a similar change has not been effective in other countries;  that not everyone would be aware of the new legal situation; that the new legislation might lead to a lowering of standards to be met before organs are taken; and that informed consent is important in other medical matters and ought to be important here too.

The Welsh Government has organised a consultation on the proposed legislation. It is not confined to people living in Wales. Replies are required by September 10. Details and suggestions on how to reply are available here and here.

If you have concerns, will you not express them?

The remarkable story of Steven Thorpe

There used to be just one condition for a diagnosis of human death: irreversible cessation of breathing and heartbeat. In the 1970s, when organ transplantation was becoming more common and there was an increasing need for donor organs, doctors decided on another criterion for death: brain death, which isn't really death at all.

A patient certified as brain dead can be expected to be on a ventilator to enable him to breathe. He will breathe in oxygen and breathe out carbon dioxide. His heart will be beating. His body will be warm. If he is given liquids, he will urinate. He will digest food. If he is not turned regularly, he will develop bed sores. If he is not correctly positioned, he could develop pneumonia. If the patient is a pregnant woman, she can bring a baby to term. But a diagnosis of brain death allows the patient to be declared dead and his or her body used for donor organs.

The question of brain death is in the news once more with the story of an American woman who gave birth to twins almost a month after being declared brain dead, and with the remarkable - and unusual - story of Steven Thorpe. Seventeen-year-old Steven, from Kenilworth in Warwickshire, was in a car crash with two friends, one of whom was killed. He had serious injuries, and four doctors declared him brain dead. Doctors wanted to switch off life support and told his parents "You need to start thinking about organ donations." His parents refused.

They contacted a GP, who called in a neurosurgeon she knew. The neurosurgeon detected faint signs of brain activity. Two weeks later Steven woke up. Within seven weeks he was out of hospital.

There is one more thing that potential organ donors should be aware of. Potential donors, and next-of-kin whose permission is sought for organ removal, are led to believe that life support will be switched off and then the organs removed. In fact, life support is not switched off until after the organs are taken. (The only hearts, livers and pancreases that are used for transplantation are taken while the heart is still beating.)  The fact that potential organ donors and next-of-kin are not told that vital organs are removed before life support is switched off is immoral.

As one former consultant cardiologist has put it, "The uncomfortable fact is that the brains of the so-called 'brain dead' are not truly and totally dead and the diagnosis does not exclude the possibility that some donors may retain or regain some form or degree of consciousness during the surgical removal of their vital organs. We just do not know."

Tests for brain death do not and can not prove lack of awareness.

People should be able to donate their organs to be taken after their death if they wish to do so. No one wants to prevent replacement organs being available for people who need them or sick people being helped. But the end does not justify the means.

The problems with organ donation

The British Medical Association decided last week to continue to support the idea of presumed consent for organ donation - so it would be possible to take organs for transplantation from anyone who had not "opted out" of the system provided their families did not object. At present, organs are taken from people who have "opted in" by volunteering to join the Organ Donor Register.

The Welsh Assembly is to consider legalising a presumed consent system for people in Wales.

Whenever I am asked to volunteer to become an organ donor, my reply is a definite No. I do not object to people donating their organs for use after their deaths if they wish to do so, but I am not willing to become an organ donor for two good reasons.

Up to the 1960s, the only criteria for diagnosing death were that breathing and heartbeat had irreversibly ceased.

In 1976, after ventilation had been developed to provide ongoing life support for brain-damaged patients, the conference of British Medical Royal Colleges decided that if a patient tested positive for death of the brain stem, then if life support were removed, the patient would be expected to die.

In 1979, when organs were beginning to be required for organ transplantation, the conference issued a statement saying that a patient who tested positive for death of the brain stem was dead already. Prognosis had become diagnosis.

A patient who tests positive for what has come to be known as brain-stem death will be breathing. His or her heart will be beating. Her body will be its normal colour, and warm. She can digest food, and given liquids, will urinate. If she is not turned regularly, she will develop bedsores. If she is young, she will come to sexual maturity. If she is pregnant, she can bring a baby to the point of birth. But the majority of doctors will say that she is already dead, and her organs can be taken for transplant.

(A leaflet for prospective organ donors published by the Department of Health says "Will I really be dead when they remove my organs? Yes.")

I do not believe that brain-stem death is in fact death. That is the first reason why I will not be an organ donor.

The second is this. Prospective organ donors and their next of kin are never told that the patient will still be breathing and his or her heart still beating when the organs are removed. (The only organs used for heart, liver and pancreas transplants are organs taken from patients whose hearts are still beating.)

Prospective donors and next of kin are led to believe that life support will be switched off and then the organs removed. This is not what happens. Any organs required will be removed, sometimes without anaesthetic, and then life support will be switched off.

For donors and next of kin not to be told that the patient will be breathing and the patient's heart still beating when the organs are removed is unethical and immoral.