Transplant recipients need to be fully informed about the donor

This is transplant related, and addresses an issue that has been bothering me for a long time: why do the privacy rights of the deceased donor take precedence over the informed decision for the organ recipient?
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NEWS ARTICLE

Transplant woman, 28, dies after getting lungs of donor who smoked for 30 years

By James Tozer
Last updated at 8:04 AM on 15th June 2010

A transplant patient who died five months after surgery was given the lungs of someone who had smoked for 30 years.

Lyndsey Scott, 28, was never told about the unhealthy lifestyle led by the donor.

Last night, her family told of their horror at learning the truth after applying to see her medical notes.

Miss Scott, a cystic fibrosis sufferer, was put on the transplant waiting list four years ago after her condition deteriorated.

Donor lungs became available 20 months later and she hoped the double transplant would prolong her life.

She underwent surgery in February last year but there were serious complications from the start and she spent more than six weeks in intensive care.

Eventually, she was allowed back home to her parents in Wigan but still suffered from breathlessness.

After only a few weeks, she had to go back to hospital. Miss Scott died in July with her family at her bedside with her cause of death given as pneumonia.

It was only months later after applying for medical notes that her family made the shocking discovery about the donor.

Her father Allan said yesterday: ‘She would have been horrified to have known those lungs were from a smoker and quite definitely she would have refused that operation.

‘She was always anti-smoking because of her condition.

‘For someone to have a major, major operation like a double lung transplant and not be given all the facts is unthinkable.’

A shortage of donors is forcing surgeons to consider an increasing number of less healthy organs.

Research has revealed around a quarter of donated organs are classed as higher-risk or ‘marginal’ – double the rate of a decade ago.

Doctors, however, insisted they only used organs which they were confident would be a success.

Miss Scott’s father and mother Kathleen said they understood there was a shortage of organs but wanted to know why patients were not told about donors before surgery.

‘I understand there is no such thing as a perfect organ,’ said Mr Scott, a retired painter and decorator.

‘The hospital have said Lyndsey wasn’t told the lungs had come from a smoker as it could have added to the stress of the operation – but how can that be right?

‘Patients should be made aware at the beginning of the transplant assessment phase.’ Miss Scott’s sister Karen added: ‘A couple of weeks before she died, she said “I wished I’d not gone through with it”. Those words have really come back to haunt us.’

University Hospital of South Manchester NHS Trust said it had followed national guidelines.

The Disease with no cure

Patients were only told about specific health risks associated with an organ, for example if the donor had taken drugs.

A spokesman added: ‘Because the number of lung donors is extremely low and 30 per cent of recipients die before getting a transplant, we and other centres have extended our criteria. This is increasing the number of viable lungs available for donation.’

Doctors said organs from healthy donors rarely came up as such people are less likely to die young.

Last night Professor James Neuberger, associate medical director of the British Transplantation Society, said patients were often better having surgery even if the organ was not ideal.

‘They have to balance the risks of not getting an organ because there is a shortage,’ he said.

According to NHS figures, three people die each day waiting for a transplant. Miss Scott’s treatment at Wythenshawe Hospital has been referred to the health ombudsman.
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