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The daily dilemmas for doctors at Great Ormond Street

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Charlotte Moore Charlotte Moore | 13:47 UK time, Tuesday, 6 April 2010

Almost 10 years ago I produced and directed a BBC television series called Living With Cancer. The team and I spent two years at the Middlesex Hospital following the experiences of a group of patients as they confronted the realities of living with a life-threatening disease. One of the most remarkable people we met was a 15-year-old boy called Jonathan.

When I started filming with him, I was there in the room when he was told that his bone cancer had come back. The doctor explained that they couldn't cure him any more but they could prolong his life - and they offered him another bout of chemotherapy to keep the tumours at bay. His mother Vicki was naturally very keen for him to agree to the treatment if it meant a few more months with her son.

But Jonathan felt differently. He decided what was important was the quality of his life. He wanted to live out the remainder of his days on his own terms, away from the hospital and the gruelling effects of cancer treatment.

Cardiologist Doctor Victor Tsang and the team at Great Ormond Street at work on another operation

Jonathan was an extraordinary young man and I'm still inspired by his courage and strength. But what also struck me about his case was the way the decision was made.

Gone were the days when doctors would decide on the best course of action without consultation with the patient. Gone also were the days when the parents' will would automatically prevail. And whilst this is all undoubtedly a good thing, it made me think about how difficult decisions are made in hospitals across the country on a daily basis.

When Films of Record approached us with an idea to make a series in Great Ormond Street Hospital, I was keen to see if we could explore this complex issue further.

We knew we wanted to follow patients' stories, but we also wanted to see if we could focus on the side of the story we rarely see - the perspective and point of view of the doctors as they wrestle with the most complicated dilemmas.

One of the most powerful things that documentaries can do is to give viewers an insight into a situation that they wouldn't usually have access to. Although there has been no shortage of series in the past featuring doctors talking about their work, this series' director Ricardo Pollack and his production team managed to forge such a level of trust with hospital staff that they were allowed to film the meetings where teams of doctors discuss individual cases candidly and try to reach a consensus on what the best course of action is for the patient, both medically and ethically. The doctors allowed them to film when not everyone agreed on a course of action. And they allowed them to film their differences of opinion.

I don't believe Great Ormond Street's doctors have ever allowed this level of access before, and this is what is so compelling about the series. We are witness to conversations that you or I would never normally hear. And the doctors have been brave enough to let the cameras in to capture the raw honesty of their discussions.

What's extraordinary is that you are there in the moment with the doctors as they make the decisions, and what comes across most clearly is that these decisions are not always black and white - there are huge grey areas.

When medical science has come so far, it's often not a question of can they save a child's life. It's much more a matter of should they really keep the child alive.

Cardiologst Dr Victor Tsang outside the operating theatre

In the first film we follow the cardiac team as they attempt to treat four very difficult cases. In one case the doctors decide that there's nothing they can do for a little eight-month-old baby girl called Aicha who's suffering from a very rare and serious heart condition.

In their view the risks associated with the operation are too great. But her parents are adamant that there's still hope for their daughter and plead with the doctors to reconsider their decision.

Their cardiologist is Dr Philip Rees and he agrees to bring their case back to the cardiac team to see if there is anything at all that can be done. He feels it's important to push the boundaries and try to do everything possible to help Aicha, but he also has to be careful not to embark on treatment that could be regarded as futile.

This is the crux of the dilemma, and we see Dr Rees admit to the team that he recognises he has become too emotionally involved in the case to make an objective decision.

The team agonise over the right thing to do - before deciding to get a second opinion from a number of teams in other hospitals who will be able to look at the case through fresh eyes. That way the parents won't waste their time raising money to take their child for treatment abroad. And that way the doctors can take the decision to try out a new surgical technique. The outcome is a welcome development for Aicha's parents.

Now that patients - and in most cases at Great Ormond Street the parents as well - have a say in the treatment they receive, doctors' jobs have inevitably become much more complex.

Add to this the fact that advances in medical technology now offer parents hope that wasn't there in the past, and you begin to get a sense of the pressures that doctors are faced with. But what I hope people will take from this series is a greater understanding of these ethical dilemmas and how doctors go about making some of the most difficult decisions you can ever imagine.

Charlotte Moore is the BBC commissioning editor, documentaries


  • Comment number 1.

    Praise to BBC 2, Great ormond street was amazing. A wonderful skilled team of doctors and professors. God bless you, all staff, children and their families. I live safe in the knowledge that should either of my 2 wonderful boys ever need any medical intervention that we have fantastic medical staff available to us as portrayed in this programme.
    Well done

  • Comment number 2.

    I watched with much fear this program as I knew personnaly this program would confirm the anxieties and heartbreak that parents of heart children suffer. My son Adam now nearly 5 has had 2 heart surgeries carried out at Yorkhill in Glasgow and having personally suffered along with my child I was intrigued to see what this pushing the boundaries program could offer. It was a stated a great insight into cardiac surgery and for me it was interesting to see that the professionals do realise the anguish and suffering that goes hand in hand with long term life threatening child illnesses and will listen to parents views. My sons condition was a completely grey area of when and how they could fix it and we owe our lives to the many skilled and wonderful people who made the right judgements.
    I wish the program had been a little more balanced as a lot of cardiac children have surgeries and do extremely well. I did feel all of the stories told last night although showed how far medical expertise has come were all devastating.
    I didnt get to see any techniques I hoped would help my son as he endures more surgey to come however I did see a reminder of how great Childrens Hospitals are and how lucky we are to be living in an era where heart surgery on children can be carried out. I know I am one of those parents who took that risk twice so far and everyday my son wears his scars on the outside and my on the inside mentally.
    I owe my sons life and the happiness it has brought to Yorkhill and like many other parents from Great Ormond Street we shall never ever forget.

  • Comment number 3.

    Congratulations on an absolutely fantastic programme.
    My husband and I are parents of a little boy who is a patient at great ormond street who had complicated open heart surgery at 6 months old by one of the extremely talented surgeons you featured in last nights programme.
    Your programme showed portrayed exactly how it is, the highs and lows and highlighted the great job these surgeons and staff do.thank you for making this programme and a huge thank you to GOS for saving our little boys life!
    I live in hope of more medical advances so that many more children can be helped in the future.

  • Comment number 4.

    I am very disappointed to see that HeartLine - www.heartline.org.uk - isn't included on the help and support link.

    This organisation originated at GOSH, under the auspices of Philip Rees amongst others, 30 years ago and offers support to families who have children with CHDs.

    Sue - founder member of Heartline and with a happy, healthy adult CHD son.

  • Comment number 5.

    This is what the BBC does best well done to all.

  • Comment number 6.

    This was a really superb programme. The BBC needs more stuff like this.

  • Comment number 7.

    As a father of a profoundly disabled child this program showed the ugly truth that I have seen again and again… consultants often have extreme prejudice against disabled children. Lifesaving and life enhancing procedures that would be automatic for “normal” sick children are withheld or only grudgingly given, and often too late to have the impact they should. The fact that a child will never walk or talk is given as justification to do nothing.
    While not all consultants have this hatred of disability, the NHS allows prejudice to thrive as it is almost never challenged. In fact even this TV show accepted it as a legitimate point of view and did not confront this evil way of thinking.

  • Comment number 8.

    This series has captivated both my wife and I, at the end of November last year our 4 week old son was rushed from our local hospital to GOSH it was one of the worst times of our lives. The team worked tirelessly to ensure that our son recovered form both septicaemia and meningitis. Last nights program brought back some memories of both PICU and NICU as our child was in both, it also showed how hard that EVERYBODY works to ensure that the children achieve the best treatment. To all the people in the country who knock the NHS this is a world class facility ensuring children can survive.

  • Comment number 9.

    I am in total agreement with E Kramer, I too have a severly disabled daughter who cannot walk or talk or sit up and does spend alot of time laying down, to this Doctor in this program this was considered "not human" I was mortified at hearing this, and also another comment made about disabled children costing the NHS alot of money was appalling. If any of these so-called Doctors took the time to maybe visit these children when they are well and in their own enviroment that they would see they can live a very forfilling and loving life, they are just treated differently by everyone else and not the people who love them and care for them. This Tv show has managed to make people's prejudice towards disabled children worse than it already is, By letting a senior consultant of ("the best childrens hospital in the world") say a diasabled child is not human, please.,... what planet is he on??? Maybe this is why they have candelled my little girl's operation twice, because she is disabled?????????????

  • Comment number 10.

    My special needs daughter died at GOSH in 2005 and I "forced" myself to watch the programme and I have to say I am in two minds about the way it portrayed the whole process. I did watch most of it through a veil of tears, the consultant who I had that dreadful conversation with was on there a lot and I also am glad that I didn't have the blonde woman as my doctor - I thought she came across as very harsh, uncaring and ready to turn everything off the moment the child appeared on the ward.

    I suppose I did take on board the chat about how technology has helped a lot of children stay alive when years ago they would not have made it, but like others have commented, I found some of the wording used by someone who was supposed to be the lead consultant very inappropriate. My daughter could not walk or talk but that did not make her any less "human" than the next person.

    I think it was good to be able to see the other side but maybe some of their opinions needed to be toned down. My daughter was ventilated 15 times in her short 4 years of life and thank god we did most of that at Guys Hospital who helped her fight - GOSH would have turned it off near the beginning and I wouldn't have been able to share some very magical times in my daughters life.

  • Comment number 11.

    I wonder how many of the parents who put their children through PICU have been in ICU themselves...
    If they would have, they would think twice about what they put their children through... I find it appalling that if doctors with the uttermost care think that the quality of life is not good, that parents against all odds in find that kids need to be treated, often with a treatment that is too harrowing for words.
    Can't help but feel that some parents can not let their children go, and are just being selfish...
    Loving your child can be letting it go peaceful to the light, where it will not suffer anymore.
    I just watched episode two of GOSH, and baby deanne and Ozuma are suffering, yet they get to undergo more operations and more treatments... When will it stop? My heart is breaking... not for the parents as much, but for those babies who live day in day out in a hospital environment, attached to horrific machines, some of them never able to go home. What happened to the peaceful letting children go when they are too tired to fight on...
    How much longer do parents want to keep their children fight on, often with so much pain, bodily and emotionally... Why don't doctors take a more resolute stand in telling the parents that this baby is better off passed away then alive... I am all for saving lives, and doing all we can to comfort suffering, but some treatments are purely inhumane... We would not put animals through it, I so agree with one of the daily care nurses... They are the ones who look after the children from hour to hour, they KNOW...
    I think that medicine has reached a point where it should look back and ask some serious questions...
    Keeping alive at all cost is a sad option...
    I wished kids and babies had more advocates to speak in their name... I screamed when I learned that one of the two babies was being taken down for a stomach operation... My heart is sad... Very sad.
    I am so hoping that Baby Deanne can go peacefully in her sleep... in her little cot at home, instead of hooked up to IV's and beeping monsters...

  • Comment number 12.

    I find your comments photocat very harsh, Obviously you have never been in the situation of having a child with a disablilty. Too many people see it as cruel or selfish to keep these children alive, in actual fact it's the children themselves who want to fight and show such strong will to stay with you and keep fighting. my little girl has such severe problems they said she would not make it to 3 months, yet she is now 8 years old and still very much enjoying her life, yes she has her problems but at this time her joy and laughter out-weigh the bad stuff and she is very much enjoying her life. Her brain damage was actually caused at birth she was not premature ( not that that has anything to do with it) and she has had to be admitted to PICU 3 times in her life and spent some time in hospital when she was younger, but now we look after her purely at home and administer any medicine or pallative intervention that she may need at home so she is in her own enviroment.

    We do believe these little ones know when they cannot fight anymore and we are not selfish in helping them fight whilst they still want to, and then making the hard decision of knowing they are telling you enough is enough. Not all parents want to keep their child alive at all costs and I dont think this program showed this in a good light.

    The operation you witnessed on Deanne was called a Nissans Fundoplication and is a big operation but a very worthy one, It stops children that cannot swallow very well aspirating milk into their lungs and causing very severe pneumonias, which do cause alot of pain and suffering, and most children do recover from quite a few pneumonias before they pass away. This operation does improve their quality of life and improves their chances of survival on their own terms without alot of medical intervention afterwards.

    Also if you'd listened to the Neurologist in his diagnosis at the end, He said that Deanne would not in fact be as disabled as first thought and would only have some disabilties and not as profound as first said, so in fact that operation would have actually improved her life considerably. I think what you said is actually quite offensive to Deanne and her parents and family.

    If you could only see how far my little girl has come and how BIG HER SMILE IS, you would see that in actuall fact you are being very prejudice towards disabled people along with those Doctors.

    These children can lead very forfilling lives no-matter how severe the disability and can experience enjoyment and pain along with everyone else in the world, life is what you make it!

    They are little people with little feelings after all and if you listen to them not only with your ears, they will tell you exactly what they want.

  • Comment number 13.

    To Alexis...

    Dear Alexis, I do hear what you say. I am not at all prejudiced against disabled people. Far from. I love children, and it does not matter if they are disabled or not.
    The doctor did not say that disabled children are not human, he wondered if they have a human worthy life.
    Those are two different things.
    What makes my blood boil is stories like Little Charlotte. Blind, deaf, severe kidney problems, only be able to stay alive because of a room full of medical equipment... She has never spent a day out of hospital, nor will she ever be able to, if she leaves hospital, she will go into foster care. The doctors have said that she has no good prognosis. Would it not be more humane to let her slip away on her time instead of performing more and more "life saving" operations or traumatic actions?
    I have been in ICU as a patient, and have experienced kidney failure, I do know how long days can be in ICU for the patients. It makes me wonder how long the days are for kids or babies who can not speak up for themselves, who have to rely on nurses - who do a wonderful job.
    The issue is the difference in defining "humane quality of life".
    For me, a child like baby Charlotte is not having a humane way of life. While you might consider that a valid way of life. Little Charlotte is of course very much human, and deserves love and care, but if she would have been a dog or a horse, they would have "humanely put her out of her misery". Because she is a human baby, she is forced to live, and nobody really knows if that is what she wants, as she can not take decisions for herself or make clear to carers how her life is going.
    I think we often underestimate the traumatic character of certain medical procedures, and in a way, I wished they would not succeed in keeping preemies alive at 23 - 24 - 25 weeks of pregnancy.
    I often wonder if not more energy should be put into palliative care, which is aimed at making the last bits of life as comfortable as possible, without invasive treatments.
    I also thought that the doctors in GOSH are being very realistic and very caring in how they try to make their decisions, I have not concluded after watching them that they are against disabled people.
    I do believe and will keep believing that passing away for some kids is a blessing. For the kid itself. I also see how cruel and gutwrenching it can be for a parent to loose a child. It is the wrong way in life when kids go before parents. Who are we grownups to decide for our children that medical procedures are not too much to bare, and to have to put them through more and more aggressive treatments.
    There is a need for more evaluation of procedures, and in how far they really add to quality of life.
    It is not because we medicly CAN do a procedure, that we HAVE to do it.
    I thought that the doctors are right to try to limit stay in PICU or ICU, and for them to consider how much time on a ventilator can be seen as life saving or prolongued suffering. They clearly saw both parts of that decision making... I am not saying to not perform operations, I want doctors and parents to know and see the severity of certain procedures, and how far the positive gains of performing them go...

  • Comment number 14.

    Thanks so much to the BBC for this extraordinary series. Please do more like this.


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