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The BBC's Niall Dickson
"A revolution is about to engulf the medical profession"
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Professor Ian Kennedy
"We must learn from the past"
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Chief Medical Officer Professor Sir Liam Donaldson
'Patients' rights have to come first'
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Wednesday, 10 May, 2000, 12:45 GMT 13:45 UK
Doctors 'arrogant' over organ stripping

Organs are stored for research and teaching
An inquiry into the policy of removing children's organs and tissue for research without consent accuses doctors of "arrogance born of indifference".

It calls for wide-ranging changes to the way doctors operate and says a new code of practice and preferably a change in the law is needed.



The past has been characterised by a type of professional arrogance - an arrogance born of indifference.

Professor Ian Kennedy
Professor Ian Kennedy, chairman of the inquiry into the Bristol babies scandal, calls for almost 70 changes, including improved consent procedures for parents, and moves which would make doctors liable for disciplinary action if they break rules.

The inquiry's findings, sent to Chief Medical Officer Professor Liam Donaldson, say the existing system has been riddled with "uncertainty and obscurity" and doctors are accused of arrogance, assuming they know what is best for parents and children.

The report follows days of evidence from devastated parents of children who died at Bristol Royal Infirmary saying they had not been told that hearts, brains and other tissues would be taken before the body was returned for burial.

Professor Donaldson is carrying out a review of organ stripping following the scandal at Bristol and at Alder Hey Children's Home in Liverpool, where a chief executive has been sacked.

In his report, which comes before publication of the full Bristol inquiry results, Professor Kennedy says the changes must be enforceable and have teeth, making doctors and hospital managers accountable.

Important

But he says the retention of tissues and organs, which he calls "human material", is important for medical advances.

The code of practice would be part of doctors' contracts so they could be disciplined for any breaches.

The report recommends:

  • Proper consent is taken from parents for the removal of organs and tissues, not just the singing of a form
  • A third person, such as a nurse, should be present when a consultant gains consent
  • The reasons for the removal of organs and tissue should be spelled out
  • Parents can refuse any aspect of the proposed retention
  • Efforts should be made, where possible, to reunite organs and tissues with the child's body before burial
  • Before gaining consent for a post-mortem a coroner should ensure parents know why it is being carried out, whether any tissues or organs will be removed, and what will happen to it



The inquiry is chaired by Professor Ian Kennedy
Professor Kennedy said: "The past has been characterised by a type of professional arrogance - an arrogance born of indifference.

"The medical profession acted with good intentions as they saw it.

He later told the BBC: "We take the view that it's a practice that must bring the parents on board - it's their recently dead child we are talking about.

"There is a culture in the medical profession, one which is gradually changing, but which perhaps needs to change more rapidly."

The government's chief medical officer, Professor Sir Liam Donaldson, told the BBC that changes to the law were a possibility.

He said: "I feel very deeply for the parents who have been caught up in this. We are absolutely determined to put this situation right.

"Post mortem does have a valuable role and most patients and parents accept that but it can only be done with proper permission.

"We have to show respect and we have to ensure that when people are asked to sign consent forms, they know what they are signing."

Health Minister Lord Philip Hunt said: "If it is necessary to change the law, we won't hesitate to do it.

"This is yet another example of why we have to see a culture change in the NHS. It has to be wrong that patients and their families are the last to know what is going on."



We must ensure that everyone in the chain of communication puts the patients' and relatives' interests first

Dr Michael Wilks, British Medical Association

Helen Rickard, secretary of the National Committee Relating to Organ Retention said the group was pleased discovered in March 1996 that her own daughter's heart had been removed at Bristol Royal Infirmary.

She said: "They have taken a large step forward in the recommendations that they are making."

Dr Michael Wilks, chairman of the British Medical Association's ethics committee, rejected claims that doctors were indifferent to the feelings of relatives.

He said: "I think that in the past, when there has been a failure to inform relatives properly, it is more likely to have been out of a wish to avoid discussion the distressing details of a post mortem examination.

"It is not right to duck those difficult conversations but I can understand why it happened.

"We must learn from the experience and ensure that everyone in the chain of communication puts the patients' and relatives' interests first."

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03 Apr 00 | Health
Child's brain 'thrown away'
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