A Matter of Consent

This is the full transcript of the Spotlight programme entitled A Matter of Consent, which was broadcast on 13 February 2001. The reporter is Stephen Walker.

Mandy Moore (Mother of dead baby):
I just couldn't believe that people could be capable of doing this. It just seems to me - it boils back to the days of body snatching.

Dr Claire Thornton (Regional paediatric pathologist): By standards of today, it is unacceptable, but 20, 30 years ago procedures were different.

Paul Prince (Parent of dead baby): I feel deceived. I feel that they had no right to do this. I feel whatever trust is there between you and the hospital has gone completely. I will never ever trust the hospital again, ever.

Professor Peter Toner (Consultant pathologist): We are all masters of our trade and there is perceived arrogance from those who are outside. Yes, I am prepared to admit that we have been seen as arrogant by the public.

Stephen Walker (Reporter): Just before lunchtime today, the Health Minister, Bairbre De Brun, stood up in the assembly to make one of the most important speeches of her ministerial career.

Bairbre De Brun (Addressing assembly): I wish to report to the assembly on my findings on the scale of human organ retention in hospitals following post-mortem. I am today announcing a major initiative to investigate past actions, support those affected and ensure that such practices can never recur.

Reporter: But will today's announcement be enough to win the support of medical staff and families alike?

A baby boy has just been buried in this graveyard for the second time. At his first funeral nine years ago, he was laid to rest with his brain and heart missing - organs that had been taken without his parents' knowledge.

Today those parts were added to his grave. The anguish and pain felt here is mirrored in homes across Northern Ireland after relatives are discovering that the organs of their loved ones have been taken without their knowledge.

Tonight, Spotlight asks how and why this happened and we examine how our health service is coping with this latest crisis of confidence.

Mandy and Stewart Moore begin one of the most difficult trips of their lives .

They are on their way to collect the remains of their baby boy.

For nine years, the Moores were unaware that Altnagelvin Hospital had stored their son's brain and heart.

Phillip Moore was born prematurely in April 1992. He was just 3lbs 12ozs.

His heart wasn't formed properly and he was put on a ventilator. He died after his kidneys failed.

Reverend Matthew Moore (Altnagelvin Hospital chaplain conducting funeral service): We pray very particularly for Mandy and for Stuart, today at this very difficult, traumatic time in their lives. We pray also for other families as well, who are going through a similar trauma.

Mandy Moore: He had a real struggle for his first two weeks, and then for them to take his organs away, and come back to me nine years later, and say we have Philip's organs. You would nearly say it's somebody sick in the head that would do the like of that.

You wouldn't dream of going into anybody's house or home and stealing stuff out of it, but they went into my son's body and stole his parts, and that's the eighth commandment - thou shall not steal - and that's just what they have done, they have stole my son's organs.

Fair enough I'm getting them back again nine years later, but I shouldn't have been in that position to have to give them back. They should have been there to start with.

Reverend John Hemphill (Balteagh church minister who conducted funeral service): And so we can see perhaps a little of the pain and sorrow and tremendous agonies and trauma that Mandy and Stewart and the family circle have had to endure.

Reporter: For the Moores, Phillip's death was all the more painful - because five years earlier, another son, Cameron, died after living for just ten minutes.

Their sons are buried together. When Phillip died they knew medical tests would be carried out but they were completely unaware that his brain and heart would be retained.

Mandy Moore: I can understand them looking to do work on organs that has had problems to them, but not holding them. People have been burying their families, and they have maybe not been burying the full person. And it's an awful thing for anybody, to go back two or maybe three times, and open the one grave again.

Reporter: The Princes are another family who are trying to take in what has happened. As they go out for a Sunday lunch, they appear like many other families - but privately they have just endured one of the hardest weeks of their lives.

Six years ago their baby daughter died half a hour after being born - unbeknown to them Altnagelvin Hospital retained her brain.

Paul Prince: Last week I was out of the house, and two women arrived at the house, and just said to Lisa my wife: "You have heard about the organ retentions in the media?" Lisa says: "Yes I have", and of course she knew straight away what they were going to say and they told her that they had taken something from Chloe.

After a few moments Lisa insisted and wanted to know what it was - they took her brain. No words, can describe what it like to lose your baby. We were never told anything. All they told us was to sign a form for an autopsy and I actually thought that was standard procedure for anybody that died.

I thought there was an autopsy. I don't know if there is, but I signed the form, and that was it. We were too distraught. This was only an few hours after she died.

Reporter: Post-mortems have always been shrouded in mystery . For generations, relatives have never known the full extent of the operation. It was part of the paternalistic age - if relatives didn't ask - they weren't told. Medical staff had to gauge how much information they wanted to reveal to the next of kin.

Consent for the autopsy is normally secured by a doctor but the Coroner has the power to carry one out without the blessing of families involved. The post-mortem is always performed by a pathologist.

Professor Peter Toner: We undertake that post-mortem to establish the full circumstances at the time of death. Now of course the cause of death itself is the starting point. There are, of course, many other reasons why autopsies are important.

Now we use them for example to improve the quality of care by understanding the circumstances, after death we can often identify issues of perhaps treatment and management that might be improved for future patients with similar diseases.

Autopsies are important also because the statistics are accumulated by the registrar general have to be validated and made as accurate as possible, and the autopsy is a quality control of those statistics. And then there is teaching and training.

Reporter: Hospitals have stockpiled over 50,000 organs. At Alder Hay, children were systematically stripped of their organs.

It was the investigation into practices at Alder Hay Hospital in Liverpool that first made the public aware of the issue of organ retention. The stockpiling of organs by maverick Dutch pathologist, Dick Van Velsen promoted an inquiry which led to an overhaul of procedures.

Although there is no evidence that abuses seen at Alder Hay went on here, the scandal has forced local hospitals to admit for the first time the extent of their role in organ retention.

A small number of organs have been retained by the coroner and by smaller hospitals but the overwhelmingly majority of them were kept by our two biggest hospitals - the Royal Victoria Hospital and Altnagelvin Hospital.

Stella Burnside (Chief Executive, Altnagelvin Hospital): We have some organs that date from 1992. Of the organs that were retained, there are some 45, from adult people and some 15 from children and once we became aware of that, then the clear duty for us, is our duty of care to inform the relatives, the mothers of those children.

That was a very difficult process of deciding do people want to know this. How could we bring that news to them and how could we support it, people through that, sort of difficult time and what did we have to offer them as help?

Reporter: Both Altnagelvin and the Royal have stored adult and children's organs - but they have adopted different policies when it comes to informing the families affected.

Altnagelvin has contacted the relatives of children but decided not to inform the families of adults.

The Royal has opened a helpline and encouraged concerned relatives to contact them.

They have admitted storing 362 organs over a 56 year period - and keeping 677 brains and spinal cords.

In the past fortnight, they have taken nearly 1,500 phone calls.

Dr Claire Thornton: (Speaking on telephone) You must sign a post-mortem before a post mortem is carried out. Now the other place I can check for you is the mortuary, the big mortuary ledger.

Dr Thornton: We are trying to re-assure the parents who phone, as I say there are huge numbers, and in most cases there's either no post-mortem, or if there's been a post-mortem there are no retained organs and we're trying to reassure those parents.

In the ones where there are retained organs I'm seeing them all myself, and talking to them here about what has happened, and trying to explain to them. We're also talking through the actual findings of the post-mortem and discussing what to do with the remains.

Reporter: One parent the Royal is continuing to talk to is Cathy McGonigle. She gave birth to a baby boy in September 1994 . He was stillborn. She agreed to a post-mortem but was unaware that her son's brain was retained - something she only discovered when she contacted the hospital .

Cathy McGonigle (Mother of dead baby): I rang the Royal after I read in the Irish News about the organs, believing that I wasn't going to be told anything about my baby.

I really believed what I'd read that you were talking years back. I then phoned and spoke to the pathologist who told me yes, they had something belonging to my baby.

At the time she didn't know which organ and I was to phone me back. I rang back two hours later and was told by the pathologist, we have the brain. I was hysterical at the time, distraught.

She gave me a couple of minutes and then gave me four options of burial. I told her I didn't want to know anything about them, I wasn't going there.

Reporter: Cathy McGonigle says she is not prepared to organise a reburial of her son's brain until she is convinced the Royal haven't retained more of his organs.

Cathy McGonigle: We're very concerned that there's possibly other organs. On the post-mortem report there is an additional report of further examinations that were carried out which mentions other organs as well as the brain and we're concerned that they did remove other organs and that they have been disposed of.

Reporter: The Royal insist that they have a comprehensive record of what organs were taken and when they were removed.

For many concerned parents this is their first port of call - and often the first question medical staff have to deal with is why organs have been kept.

Dr Claire Thornton: In the case of children, it would have been for diagnostic purposes and many of our specimens, probably the majority, of the organs that we have retained are actually hearts from children who have had major congenital abnormalities.

Some had surgery and some never actually survived to have their surgery and these were retained because the abnormalities are complex and the pathologist would want to look at them several times, you know again and again, to make sure that they've got the most accurate diagnosis.

Reporter: It is the issue of informed consent that goes to the core of this debate. Most parents or relatives are likely to agree to an organ being removed if they were told it would assist diagnosis or research.

But the problem is that, in the past, such detailed explanations were rare. And the consent forms that relatives have been asked to sign until as recently as two years ago are now seen as vague.

(Forms shown) These were the forms that relatives at the Royal Group of Hospitals were asked to sign. Although there is mention of tissue being removed or retained, there was no explicit mention of organ removal and retention.

At Altnagelvin Hospital it was a similar story. There was no mention of organs being removed or kept.

Stella Burnside (Chief executive, Altnagelvin Hospital): I think that they are not vague, they are very explicit. In terms of absolute limitation they did not take account of people's need to know detail.

Reporter: But the old consent forms do not make it clear, in black and white that organs could be removed.

Stella Burnside: Absolutely not.

Reporter: So where was the consent?

Stella Burnside: I think. I mean when you talk with pathologists and when you talk with ethicists, you know and we look at this as a problem, that exists not only across the United Kingdom, when we talk with our colleagues in Dublin, and Scotland.

I mean now it's very clear to see but that was a standard that seemed in the past to have been acceptable.

Dr Claire Thornton: The parents had all consented to an autopsy. Admittedly, when we look back, not informed. But that was because I think in those days the clinicians did not feel they could discuss the details of an autopsy with the parents. They felt that they would cause more unnecessary grief to parents who were already very distressed.

They did have the parents best interests at heart.

Reporter: But they weren't specifically asked: "Could we remove the following organs?"

Dr Claire Thornton: No. That's done now. But in those days, no. There was no detail as to what went on in an autopsy.

Reporter: And looking back, that's a mistake.

Dr Claire Thornton: Well, we wouldn't do that now.

Reporter: Brian O'Connor was born in January 1999. He was three months premature and died after just two hours.

Unbeknown to his family his brain was removed and it was later cremated with the ashes scattered at Roselawn Cemetery.

His parents now want to know why the brain was retained and for how long it was kept.

Martha O'Connor (Mother of dead baby): I would like to know whether it was a few days, a few weeks, a few months, because part of me wonders if it had been a few days, or a week later, then I would have buried him and I would have preferred that his brain had of been buried in with him.

Then I would have known that he was buried complete but he's not. I mean I always... I went down to my grave in, Brian's grave and my son who was buried and he was buried the way that he was born, as I thought.

And now I know that he wasn't - part of his brain, his brain is scattered at Roselawn and his body is buried in the City Cemetery.

Now I do have the feeling that when he died his soul was in heaven, but they stole his brain, they robbed, robbed from the dead and that's what they've done.

Reporter: For Karen and Maurice Burns, images of their son Owen's life are precious. In an ironic twist, his scans were recorded for a BBC Panorama programme in 1997.

But 22 weeks into the pregnancy things started to go wrong and doctors discovered abnormalities.

Later Owen was delivered stillborn. He was buried at Blaris Cemetery near Lisburn, next to his baby sister. The Burns' consented to a post-mortem but were never told Owen's heart was to be permanently removed.

Late last month they discovered his heart been taken and later cremated with the ashes scattered at Roselawn cemetery.

Karen Burns (Mother of dead baby): I feel it would have been easier if they had still retained the heart, and if I could have got the heart back myself to have buried along with the rest of him. He's buried in Blaris.

They said that they cremated his heart and scattered the ashes at Roselawn, so I feel there's a part of my baby in Blaris cemetery and the other part in Roselawn.

It would have eased a bit, at least we'd have been able to do something out of the whole mess. But as it stands, we can't. There's nothing. There's nothing there to get.

Reporter: Like so many other families the Burns' are left with many unanswered questions - but their overriding feeling is one of anger that throughout this entire episode it's their wishes that were ignored.

In 1995 the Royal decided to cremate stored organs at Roselawn Cemetery where there's a garden of remembrance.

But when procedures changed, it meant parents would be fully informed of any cremation.

Reporter: Did the hospital ever consider during 1995 - 1999 informing parents of the cremation?

Dr Claire Thornton: No. We didn't.

Reporter: Do you think that was wrong?

Dr Claire Thornton: Now? I wouldn't do it. In those days I thought it was an improvement in what had gone before. But then as you can see, I decided that that was - it needed changed again and we moved forwards.

Both Altnagelvin Hospital and the Royal Hospitals have now changed their post-mortem consent forms

Reporter: Last year this new form was introduced at the Royal. Relatives now have the right to say how they want to limit the post-mortem, if organs can be taken, how they and issues should be disposed of and if they object to the organs being used for medical research.

Professor Peter Toner: We now have very detailed procedures for consent, and for fully informed understanding of what post-mortems are for.

We believe and we will hope to explain to the public - but the post-mortem remains an important part of the investigation of disease and in the quality of medical care.

And in the fullness of time, I hope we will be able to convince the public that what we do is ethical and is fully in their interests and in the interests of the health of patients in the future.

Reporter: At Altnagelvin Hospital new post-mortem guidelines have been in place since May 2000. In common with the Royal Hospitals' consent form it gives relatives the opportunity to object to organ removal and retention.

The hospital has also launched their own inquiry which will include an input from public representatives. Helen Quigley is on the inquiry team.

Helen Quigley (Western Health Council): It does seem UK-wide to have been generally accepted that this was a generally accepted practice.

But we are in the 21st century, and I think certainly, the medical profession need to be told and they need to understand that this is totally unacceptable and that never again should any family ever have to endure the grief and the distress and anxiety that these families have had to go through.

Reporter: Bairbre de Brun hopes her announcement today will ease the fears of families. The health minister has put forward a four point plan. A new inquiry is to be set up

Bairbre de Brun: This will review past and current practice in post-mortem and organ removal, retention and disposal. The enquiry will report on past practice, and make recommendations for future arrangements. It will report to me within 12 months.

Reporter: The minister is also to establish a support group for relatives.

Bairbre de Brun: The speedy establishment of a relatives support group to work with parents and hospitals to ensure that those families affected receive full and timely information and support.

Reporter: Legislation will also be introduced to make it unlawful to retain organs without consent.

Bairbre de Brun: A review of the Human Tissues Act (Northern Ireland) 1962 with the aim of strengthening its provisions in regard to consent, and to make it a criminal offence to retain organs without informed consent.

Reporter: And new rules will also be drawn up for medical staff.

Bairbre de Brun: I will prepare good practice guidelines for the health services. These will provide interim guidance to the service on acceptable practice.

Reporter: Understandably the families want to have complete confidence in any investigation that attempts to discover how practices and procedures let them down - and even those who represent key medical personnel appreciate the need for transparency.

Dr Vivian Nathanson (BMA): Doctors are as distressed as patients are but in a different way and are absolutely determined to make sure this doesn't happen again and we address the fundamental issues behind it, and that we use this as a lesson that all ethical practices are re-examined on a regular basis to make sure it is what patients expect from doctors who are there to treat them.

Reporter: The medical world hopes that when the headlines over this case have long disappeared, public support hasn' t evaporated as well.

One area where support is vital concerns the issue of organ donation. Although organ retention and organ donation are two separate issues, it seems they are becoming confused and there's concern that a drop in confidence could affect the donor programme.

John Connolly works as a transplant surgeon at the City Hospital in Belfast.

John Connolly (Transplant surgeon): The problem, is that the whole area of organ donation for transplantation is a very sensitive issue and must be treated sensitively. So any media coverage which causes confusion in the public's mind, as to what organ donation involves, can result in a loss of confidence in the system, and therefore greater numbers of, shall we say, potential donor families refusing to allow organ donation to occur. That's what gives us cause for concern.

Reporter: Bill Weatherall has been waiting eight months for a new liver. In his younger days he played football for a number of Irish League clubs including Glentoran and Portadown. Today he is devoid of energy.

He believes the controversy could scare off potential donors.

Bill Weatherall: Public opinion can be very fickle and public opinion could change but all we can do is wait and see. My advice certainly is to people who are thinking of it, or people who have gone this road before with their cards and their decision to donate an organ, is that to stick with that decision.

Reporter: But it is the area of medical research where the biggest concerns are being expressed. Most of the tests carried out here at this laboratory at the Royal Victoria Hospital are done to help living patients - but examinations are also carried out on post-mortem tissue.

There's a worry that if relatives are now reluctant to release, tissue and organs pioneering work may be halted.

Professor Peter Toner: It is possible that there will be a holding back from the public if they don't appreciate fully - how important this work is. But I do believe that especially in the case of chronic neurological disease such as MS, and Parkinson and dementias, the patient groups, the support groups, are extremely concerned with research.

They support research, they support the clinical doctors, and they support the pathologist in their research activity. And in many instances the patient's themselves, gift the brain, their own brains before they die, for research and for long term study of this sort.

Reporter: As someone with Parkinsons disease, Margaret Devers - is desperate for any breakthrough that would improve her life and those of her fellow sufferers. She has been heartened by pioneering research - research that is dependant on donated brains and fetal tissue.

Margaret Devers: We were given the ok to go ahead with this research. It was great hope for the future - maybe not me - but maybe other people coming up. There's quite a lot of young people now has taken Parkinson's and all they face is a lifetime of drugs and that's the only thing they have in front of them.

So if this was successful there was great hope that they'd be able to do this and they wouldn't have that to face. But now with all the talk about it, I mean I, we believe now and I believe that people will be very wary of handing over, signing over organs now.

Reporter: Those charged with running the health service know the organs controversy has undermined the relationship with the very people they are meant to serve.

In this era of patients' charters and freedom of information the NHS has clearly been slow to adapt .

Professor Toner: I would say from my own experience, the people of Northern Ireland are open minded and are willing to listen and understand the issues when they are properly explained. Our failing, as the medical profession, has been to - to fail to take the opportunity, to explain fully, when the public were clearly ready to understand, and we are now doing that. And we will in the future be doing that much more explicitly and clearly.

I hope that the public will follow and understand that what we are doing is in the interests of medicine in general.

Reporter: For Stewart and Mandy Moore, answers can't come quickly enough.

Mandy Moore: Apologies can't fix things like that. They are going to have an awful lot of reassuring to do. You'll always wonder if your next of kin is going for a post-mortem, and are they going to be coming out a complete person.

Reporter: Cathy McGonigle and her family are in limbo. Even though the Royal Hospital has told her she can collect her dead son's heart for reburial, she has refused until the hospital satisfies her that other organs haven't been retained.

Cathy McGonigle: We want to get this sorted. We want to get our answers. We want to be able to bury our baby. And to do our grieving in private. And at the end of the day I think that answers are needed - not just for us - it's needed for everyone.

It involves everyone. It's not just to do with mothers and babies, it involves children, adults. And unless there's something done now then we are always going to have that worry on top of loosing a loved one.

Reporter: But for the Prince family it is perhaps too late. Nearly six years after first burying their daughter and two weeks after adding her remains to the grave, the pain of the past is still dictating how they see the future.

Paul Prince: I will never ever trust the hospital again, ever. No matter what happens. The medical establishment, we have had a few dealings with the medical establishment over the last five and a half years, and I wouldn't trust them at all.

Reporter: The inquiry into organ retention is expected to be completed within a year. Both the authorities and relatives hope it will ultimately provide answers and show how patient confidence can be restored.

Then the shroud that has covered this corner of the medical world for generations will hopefully be lifted.