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Wednesday, 22 November, 2000, 00:01 GMT
Back from the Dead: Transcript
This is the full transcript of Frontline Scotland's Back from the Dead programme broadcast on 21 November and presented by Ross McWilliam.
REPORTER: The medical term is "vegetative state", but they've been called the 'living dead'. Paralysed, but apparently awake, breathing for themselves yet, unaware of what's going on around them. Their conscious minds have been destroyed by massive brain damage. The choice is a stark one - stop artificially feeding them and let them die or, keep them alive and hope.
This woman was told she had no real prospects of recovery. But, she did.
DR FIONA SMITH: I'm very deeply disturbed by what goes on at present. I think the expression "vegetative state" is loosely used. This is me, somebody who was NOT dying, and yet was, to a certain extent, condemned to death, given a hopeless prognosis.
KEVIN SMITH: How could they be so wrong, how could they put us through this? To say that she's not going to get, and she did. But still, it was like, overpowered by she IS out, and who cares what they said.
REPORTER: Life or death, it's an agonising decision and doctors have been given the power by the courts to make it. Official guidelines say they should wait a year before ending the life of a patient in a "vegetative state", but Frontline can reveal this rare condition is widely misdiagnosed, and some doctors are breaking their own rules.
Five years ago Dr Fiona Smith was seriously injured in a car crash. She was diagnosed as being in a Vegetative State - she was awake but unaware. And Scottish doctors believed that condition would be permanent.
Fiona made an amazing recovery, but she's angry at doctors who, she thinks, gave up on her too soon. She accuses them of playing God.
Dr FIONA SMITH: My family were obviously very well informed, and I think most other families, a lot of other families will not be so well informed and, therefore, think this God-like person is saying such and such, they will trust this, they will trust this person, they will have faith in this person because they're a doctor. And, I don't think doctors, because they're a doctor merit faith and trust.
I think that is something that has to be earned. My family were told that I was a hopeless case, and they were advised that I would need to be taken somewhere and then just left to die an natural death.
REPORTER: Fiona Smith was on holiday with her husband and three children in France when tragedy struck.
Dr SMITH: All I know is that we had come up to a bad roundabout, and the traffic was flowing kind of quickly, and I asked Jim to look to see if anything was coming, and he must have misjudged the speed of a lorry which hit the car at his side. And it was so amazing, the car killed him, injured my brain, and yet the kids were spared.
But the kids must have suffered so much because there they were with their dad dead, me in a coma, em, unconscious at that time, and them in the back. I mean, it must have been so horrible.
REPORTER: Her youngest son, Kevin, who was just seven at the time, escaped with cuts and bruises.
KEVIN: I was asleep, and em, were all asleep, and then just all of a sudden there was this big bang, and like a sharp pain in my leg, and just hearing all the shouting and that, and like cars stopping and that. And then em┐.just waking up and thinking no it's just a dream, I know everybody thinks he's made it up, or he's just hallucinating, but I definitely did see, for the very last time I saw my dad move was grasping over and grabbing my mum's hand.
REPORTER: Fiona was taken to the nearby Truseau Hospital in Toures, one of France's top medical centres for the treatment of brain injuries. Specialists there predicted the Dundee GP would make a recovery within three months.
KEVIN: Just after we'd been told that our mum was OK and that she was in a coma, and she was like really seriously hurt, but she was OK and she had tubes, and she would get out of it and that, I can just remember thinking - at least we have my mum.
REPORTER: But back home in Scotland doctors painted a much bleaker picture. Fiona's relatives were told to expect the worst. Her medical notes at the time record she was "Clearly in a "vegetative state" with no realistic prospects of making a recovery."
FIONA SMITH: My family, my kids hope. Their dad was dead, they were told I would never become independent, I would never really, they could almost see that I would just die.
REPORTER: An inquiry into Fiona's treatment is going on. The Tayside Hospital Trust would only say that at no time was Dr Smith diagnosed as being in a "persistent vegetative state", and her care wasn't affected by any prediction about her recovery.
Fiona astounded doctors by beating the odds. Things aren't quite back to normal, but she is looking after a home, and her three children.
KEVIN: It is just unbelievable that out of so much bad stuff, after that three months, there was now a certain chance of hope, and thinking how could they be so wrong, how could they put us through this. To say that she's not going to get out, and she did. But still, it was like overpowered by she IS out, and who cares what they said.
REPORTER: Fiona Smith is a doctor. Her late husband, Jim, was a doctor. But she firmly believes that doctors shouldn't be the ones who decide whether patients in a "vegetative state" live or die.
FIONA SMITH: Some, I think, have to be given the paramount importance, because they are the people who have to deal with the patient after the doctors are all relieved of their problems patient. I mean family are the ones who have to deal with the long term care of that person.
The law says while relatives can have an opinion, it's doctors that have the power to withdraw treatment. But research by medical law expert, Professor Andrew Grubb, shows patients are often diagnosed by doctors with little experience.
Professor ANDREW GRUBB (Professor of Medical Law, University of Wales): What we did discover is that relatively few doctors who were likely to have seen patients in this condition, had seen many patients in this condition. A fair proportion had seen one or two, but very few had seen more than, say five. And, although it wasn't from our study there is, I think, a strong suggestion that the nature of this condition means that it's better diagnosed through experience.
REPORTER: A "vegetative state" is where the thinking, or conscious part of the brain, has been badly damaged, but the reflex part still works. The condition can only be diagnosed by observing patients very closely.
But widespread mis-diagnosis has been uncovered by the UK's top specialist centre for patients in "vegetative state".
Dr KEITH ANDREWS (Director Royal Hospital for Neuro-Disibility): Our own research at this hospital has shown that quite a number of people who were sent to us as being in a "vegetative state" actually weren't, it was round about forty per cent had been mis-diagnosed. Some of the patients who we found had been mis-diagnosed had been mis-diagnosed for well over a year, including one man up to seven years.
If you have very severe brain damage and you have deformities, your face is flat, you can't speak, then it's very much more difficult to be able to express your views that you are actually aware. In that case if somebody is not in a "vegetative state" it takes considerable skill in getting them into the optimal condition to be able to communicate.
REPORTER: The Royal Hospital for Neuro-Disability in Putney has developed a technique called SMART. Doctors, relatives, and specialists, like Occupational Therapist, Ros Munday all have a role to play in assessing the patient's awareness.
ROS MUNDAY: It covers all the five senses of vision, hearing, touch, taste and smell. It also looks at someone's motor function throughout the assessment, and ability to communicate, and their level of wakefulness. Things like vision, we're looking at whether someone blinks, or moves their finger towards where they actually close their eyes.
And with hearing we're looking at whether someone, with a loud repeated sound, actually blinks each time, and whether they actually turn towards the noise. It takes repeated assessment, we're actually doing ten sessions before we say that we've actually done an assessment.
REPORTER: Do you think there is that danger that perhaps in other hospitals that aren't doing the test that you're doing, the SMART test, that people can be mis-diagnosed and they're said to be in a "vegetative state", but they're not?
ROS MUNDAY: I think for hospitals where they rarely see people in this condition that it's very difficult for them to do an assessment, but there always is the danger that people may be missed.
There are people, we've had one gentleman who was eight years post-injury, and one lady of six years, that particularly stick in mind. And it's when they came here, where they had the diagnosis of "vegetative state", when we were doing the assessments and SMART we actually found that they were aware and they could follow instructions, and went on to developing communication.
REPORTER: The courts first got involved in the debate in 1993. The family of Tony Bland, a brain damaged survivor of the Hillsborough disaster, argued successfully he had a right to die. Doctors were given the go-ahead to stop feeding him.
Later, Scottish courts gave Janet Johnstone's doctors and family the same permission, but they went one step further, saying that in future doctors didn't need to come to court.
The British Medical Association has played a leading role in the debate over the treatment of patients in a "vegetative state". It's powerful and influential ethics committee says it's safe and right to end a life after a year.
Dr MICHAEL WILKS (Chairman, BM Ethics Committee): We say very clearly that you must have stable situation for a long period of time to give you the confidence as a doctor that you can go to the family and say we are confident that this is a condition which is not going to improve, it's in a steady state, and we, therefore, can now discuss whether the treatment might be withdrawn.
Prof. GRUBB: Our study shows that doctors feel that the twelve month period was very conservative anyway, and feel increasingly confident as time goes on but under twelve months that the condition is, in fact, permanent.
REPORTER: The study also shows that many doctors feel confident they could make a safe diagnosis in just four months. But whatever the time-scale for withdrawing feeding doctors are making life and death decisions even earlier by withholding other vital treatment.
Prof. GRUBB: Ninety per cent of doctors who had experience of patients in this condition would think it is appropriate in some circumstances not to treat an infection, or other life threatening conditions.
We don't know how many patients in a "persistent vegetative state" die not because their tube feedings are withdrawn, but because they don't get antibiotics. But it's certainly, if you like, well recognised within our group of people we surveyed that not treating them, rather than withdrawing feeding and water was something that was acceptable.
REPORTER: But in Fife one young mother had survived for over eighteen months - six months longer than the BMA's guidelines on when to stop artificial feeding when her mother notices signs she was conscious.
CHRISTINE GOURLAY: I always felt her eyes were following me. But, they've always said it was just a spasm, that Tracy would never come out the coma. She was taken down to the Vic and she got this operation, and she took a kind of infection, and Tracy was screaming, and I mean screaming, and pulling her legs up.
He (Tom) couldn't stand it, so he went home, and I stayed till I saw a doctor. And em, I when I says to the doctor, the doctors says: "Mrs Gourlay, Tracy doesn't feel pain." I'm telling you my daughter was in pain.
REPORTER: Tracy now lives in her own home with round-the-clock care. Her family are regular visitors. She uses an electric wheelchair to get around and a computer to communicate.
CHRISTINE: Usually she likes to go up to Asda because everybody up there talks to her, the assistants and that, they all know her now. And we meet a lot of people up there that she knows. She likes going up there. But when we do go out we have a good time. Sometimes I have to bring her home because she's been in a bad mood, but she likes, she usually likes going out and having a look around the shops and things like that.
REPORTER: But it's a far cry from her previous life. A fun-loving young mum with three children Tracy was walking home from a night out when a car knocked her down. She had massive head injuries.
CHRISTINE: I always that Tracy would come out of her coma. We never, ever gave up hope. For the eighteen months we sat with her day and night talking to her, and things. We never, ever, I never, ever gave up hope, never.
REPORTER: Tracy's two daughters, who often went to the hospital, were delighted when she began improving.
LYNDSEY: I'm glad that my mum's still here, even though the way she is, because you need your mum. It's like if I didn't have my mum, it's just we're not having one around, everybody else has got one, so I feel I should as well.
REPORTER: The specialist who took over Tracy's care had never considered withdrawing feeding, but her recovery was a complete surprise.
Dr LANCE SLOAN (Specialist in Rehabilitation Medicine): I think everyone involved in her care were really pleasantly surprised, but certainly had never seen anything like this before, so it was very unusual, and we hadn't come across this.
On sort of our assessments what became quite clear to us was that she had good long-term memory, she could remember things from the past, predating the time of the injury, and that was quite consistent. What she couldn't do was retain new information. So she was very much in a here and now situation, responding to the immediate environment but perhaps not remembering exactly what had happened a short time ago.
ASHLEY: Before the accident my mum was a lively person, she used to go out quite a lot, with my dad. But since then she's not been able to do anything like that, so it's upsetting for her, because she was a really outgoing person before the accident.
REPORTER: Despite everyone else's joy at Tracy, who had prepared the answers to our questions with the help of daughter Lyndsey, thinks the wrong decision was made.
Lyndsey and her mum, Tracy (Tracy shakes her head) LYNDSEY: She says she hasn't got a future.
But she has, you're here, you've obviously got a future mum.
Is that you pointing to the sky? Heaven?
REPORTER: When you were in hospital and when you were unconscious your mum and dad didn't want them to stop feeding you, they wanted to hang on because you they were sure you were going to come out of it. Are you pleased that they did that?
(Tracy shakes her head) LYNDSEY: No, you wanted them to switch it off, eh?
Can you understand why they kept it on though?
No. What if we were in that situation? It's a hard decision, eh?
REPORTER: Do you think it's right that patients should be kept fed and alive when they live in the condition that you were in?
LYNDSEY: No. Do you think the machine should be switched off?
CHRISTINE: She says to me that I should have switched her feeding off. But I says to her you weren't in my position. How would? You have to be in the position to know if you could do that, and I certainly could never have done that to her.
She was still my daughter. Maybe I was being selfish, but I still had her, that was my daughter, I could still sit with her, I could still talk to her, still hold her hand, and kiss her and that. No, I would never have done that.
REPORTER: Can you understand families who do take that decision?
CHRISTINE: Well, everybody's different, we're all different. Maybe some, you have to be strong. I never thought I would have strength, but it comes from some place. But yes, I could understand that, sitting watching them like that all day.
TOM GOURLAY: That's a lot of courage, it takes a lot of courage to say aye, switch off.
CHRISTINE: I couldn't have had that courage.
TOM: I don't think I would have had that courage either.
Dr LANCE SLOAN: No set of relatives have ever said to me 'We wish to consider this and could you take some sort of discussion or action towards that'. I can understand why it doesn't happen, and it's a very major decision for any set of relatives to take.
REPORTER: Glasgow neurologist, Professor Bryan Jennett, is a world authority on the diagnosis and treatment of the "vegetative state". He's a firm believer in the medical reasons behind withdrawing artificial feeding.
Prof. BRYAN JENNETT (Institute of Neurological Sciences, Glasgow): We would regard the withdrawal of treatment after a year when the "vegetative state" has become a permanent "vegetative state" as abandoning a treatment, a trial of treatment, that has proved unsuccessful. So we are withdrawing non-beneficial treatment.
REPORTER: If you withdraw that treatment what happens to the patient?
Prof JENNETT: Well, the patient dies, which is the natural outcome of the severe brain damage. Had we not intervened with this treatment they would have been dead a year ago. After all, this is only the result of our interventions with resuscitation, intensive care, these patients would all be dead twenty years ago.
REPORTER: But Raymond, like Tracy from Fife, was way beyond the recommended guidelines when he came out of the "vegetative state" over four years after being diagnosed.
CATHERINE KELSO: I would never, ever get them to switch the machine off, and I wouldn't tell them to stop feeding him. I couldn't, I couldn't let my, I don't ken how other people thinks, but I couldn't let the hospital, give them sanction to do that and see my son starve to death.
REPORTER: Raymond was attacked in his own home. Badly beaten and with serious brain damage, his mother spent four anxious years waiting for a miracle.
CATHERINE: It was a card that I was showing him, and I opened it up, and his eyes was going back and forward. And I says to him: "Are you reading that, Raymond?", and he just gave a slight nod. I just gret. I came out in goosepimples, and I was greeting at him nodding his head, I just couldn't believe that he was doing that.
And eh, from there he's just...and he knows everything I'm saying, knows everything I'm saying. And he answers me. And if he's not pleased at anything he just, (Catherine puckers her lips), puts his mouth out, but thank God he's the way he is.
Prof LANCE SLOAN: He does have significant memory problems, particularly short term memory. He does remember things and acknowledges things in the past. He also shows I think mood swings, which I would certainly feel entirely appropriate.
Awakening up to being trapped in a very disabled body in a total alien environment. And Raymond, on occasion, can be quite responsive to you by shaking and nodding his head. Other times he will make it quite plain by avoiding eye contact and turning away that he does not wish any interaction with you. I think he's expressing quite low mood about the situation he finds himself in.
The difficulty because of his limited communication it's very difficult to offer support, or for him to express exactly, it's his only mean of expressing the way he feels.
CATHERINE: I just think if they had said to me turn that machine off at the beginning and seeing the laddie now, you know what I mean?.
REPORTER: Patients are fed a special diet through tubes into their stomachs. Stop it, and they'll die within fourteen days. Doctors say it's a peaceful and a dignified death. But for many relatives this momentous decision to end a life is one they can't face.
Prof JENNETT: They still hope for a miracle, or they feel that they're devoting themselves to the "vegetative" patient. My question is "is this actually of benefit to the patient, or is it really of benefit to the relatives?"
Dr MICHAEL WILKS: There are people who are opposed to our guidelines who would wish this to happen. It's that you all maintain artificial nutrition and hydration and other life supporting treatment for years in people who have no chance whatever of any recovery.
Now, I don't call that good care either. I think that's harmful. I think it's harmful to the individual patient, and to their family. It's also harmful to society that we would continue to treat people way beyond any, any justification clinically for doing so.
Dr KEITH ANDREWS: I have, under considerable pressure from a family, agreed to go to the courts to have a tube withdraw. I must say it's a very difficult process, and it takes one which requires a lot of counselling, a lot of support for staff, and it is not easy for a clinician whose whole experience is caring for chronic disability, or is caring for people to know that whatever action you take, even if you believe it is right, to actually do that act of withdrawing a tube.
I think in view of the experience I've had I'd be very reluctant to do it again. But that's selfishness on my part, not because of what is necessarily in the best interest of the patient.
REPORTER: There are thought to be around a thousand people in a long term "vegetative state" in the UK. Recent surveys in this country show that ninety per cent of people wouldn't want to be kept alive if it was them. Tracy agrees.
CHRISTINE to Tracy: I'm still your mum.
LYNDSEY: It is quite upsetting to look back at videos and pictures and see my mum having a good time with her friends, and sitting on the couch with us, and we did have a good relationship. But now, I don't know, just because we don't say with her, and it's just hard for her to be our mum because┐.just the way she is really.
REPORTER: What's life like now?
Lyndsey and her mum LYNDSEY: You say it's not enjoyable, but it is, because you're here and we're here.
She says that she doesn't have much of a life any more.
Dr FIONA SMITH: I just, I'm really keen, I was going to say desperately, but I'm really keen to get back to work and just to be a doctor again. But, yes, my kids have had a hell of a time, a hell of a bad time. But they are healing too. They're all getting through it in their different ways at different speeds, and I know the future is going to be very bright for the Smiths. I know that for sure.
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