Inside The Ethics Committee Comments

William Stevenson
This is another manufactured dilemma. This is not even a difficult cancer where we can't be sure if it will 'get you' or not. It is overwhelmingly likely that this one will, resulting in blood in the urine and metastatic disease if the kidney is not removed. The patient cannot be forced into treatment under the Mental Health Act, and has an absolute right to refuse. He does not have a right to waste NHS resources, or lie about his child's fictitious meningitis. When he refused surgery, he should have been offered some very brief counselling, offered some pre-medication to assist him to go through with the operation, along the lines of what may be generally offered in the hospital and told that he could otherwise withdraw and then return for prompt treatment at any time he chose without recrimination. Then he should have been left to his own devices, with the ball in his court. This would probably have led to surgery sooner, which was after all the purpose of the faffing about.

Richard Steward
This was a superbly structured program. The carefully chosen pauses in the story whilst the panel discussed their approach, giving time for the listener to do likewise, was gripping and thought provoking. We need much more of this. Truly excellent.

Red Colm O'Sullivan
This program provided such an excellent account of every step in the tortuous process, gave a very good understanding of the deep reality of Chris' dilemma to him, and, indeed, a good appreciation of the agony for the extremely conscientious surgeon (who deserves decoration: and, for my money, this case, ultimately, could not have been handled any other way - the commentary, particularly, of the most lucid Greek consultant, confirming much of the anterior ethical consequences as I saw them). One question, only, though, remains: I do know the wife was in a difficult position throughout, and, indeed, that she was trying her best... pleading, arguing etc. BUT: at the single most crucial moment in the whole saga she maintained Chris's lie about the child stricken with meningitis in another hospital, giving the surgeon serious pause as to whether, ethically, he really should release Chris to be with the child. Unbelievably, the lie was sustained until after the successful completion of the surgery, causing the whole team huge anxiety at the worst possible moment and really nearly did stop the procedure from ever having taken place. This remains, for me, the one truly irreconcilable issue in the whole episode - and the one and only question still remaining in my mind - given the thorough excellence of the program. She surely would have had a moment to indicate the truth, without Chris' knowledge even... and, she, of all involved, knew what was at stake. I just don't get it - and would love to have her answer (or indeed reported speech from the surgeon who must have dealt with her).PS.: The related play, later that same afternoon, too, was particularly wonderful - the part of the surgeon being superbly conceived and acted.Two great programs (so "Thanks Chris!").

Tilly Downs
I thought this program was remarkable - both for its subject matter and willingness of the patient to take part and be so open about his 'phobia', plus expert 'expert opinions' on the issue. I felt it was balanced and well structured. I held my breath when I heard about it, as my family and I are struggling with an identical problem of a much loved relative suffering a similar phobia resulting in an inability to undergo surgery. Suddenly, we realise ours is not a unique situation. Some hospitals even appear to have teams who are able to support the patient through this kind of intense anxiety. Listeners should not underestimate the trauma phobia causes. Unlike Chris, we feel we have been battling alone as a family to find the help, advice and support we need right now. Your program has tackled many of the issues we had been struggling with and I thank you so much for this. A brilliant and most welcome start to this series of truely excellent programmes.

J Slater
I was dismayed by the attitude of the medical practitioners in this programme, particularly the anaesthetist. Both she and the surgeon - but particularly she - seemed far more interested in being "right" and forcing Chris to do what they deemed to be the right thing rather than focussing on him. I was angry as she started to talk about Chris' wider responsibilities to his wife and child etc - which are actually nothing to do with her or any of the medical team. The fact that the surgeon took this one to the ethics committee surprises me and is a reflection of an underlying issue of trust in the doctor/patient relationship. His action in going to the ethics committee seemed to me to be more about protecting himself and not about what Chris wanted and the advice of the ethics committee seemed to be to avoid the hospital being open to legal action rather than the patient interest. We are in danger of going down the route of people being forced to have operations whether they want them or not and doctors again deciding what is best for us, even if it is against our wishes. I was astounded that the medical team had made six appointments for Chris to have this operation. This is another example of the bullying behaviour of the medics to make Chris do what they wanted in having the operation, rather than focussing on him. It is quite wrong that Chris was able to tie up this amount of NHS resource - but people behave in a way that they are allowed to and after two no-shows a wider case review should have been called. Why just carry on with the same thing of making more and more appointments, just to be cancelled? The doctors who did this are just as guilty of wasting NHS resources as Chris was. I believe that the doctors came out of this excellent programme very badly indeed - as indeed did Chris. It was interesting, thought-provoking and well-made - well done BBC Radio 4.

M Boyd
this was a wonderful programme - very interesting, informative and useful - what the BBC does best - more please!

Gina Robinson
At first I felt angry at Chris's laissez faire attitude and about all the other patients who could have been operated on but I also thought that the hospital staff after two no-shows should have directed the patient to a counsellor before arranging for another operation. In fact, after one refusal another appointment should not have been made so quickly. Also did Chris have a phobia? I thought a phobia was an irrational fear, whereas thinking you might die during an operation seems pretty rational. It was a good programme because it was so thought-provoking. I look forward to the next one.

Trish Thomas
I listened to this programme with great interest and not a little anger. I can appreciate that the patient had a fear of having an operation and hope that he appreciated the lengths that the hospital staff went to to persuade him to go ahead. I can also appreciate that the medical and surgical staff were put in a terrible position - as someone already said, 'damned if they did and damned if they didn't.My anger however was directed at the patient who clearly did not appear to understand the implications that not having the operation would have had on him and his young family. My husband died just over a year ago from kidney cancer which had unfortunately spread by the time he came to have his operation. I only wish that he had been able to have his operation at a time where his life could have been saved.

Francesca Johnson
I thought this programme was excellent. Yes it was slow. Yes perhaps one might feel somewhat irritated by the patient's flip-flopping. BUT this is what happens in real life. They spent a lot of time on the man. They treated him like a real human being. Surely this is just what we want from the NHS? So big, so often impersonal, but on this occasion some good people who were also excellent professionals did the right thing and won through. I was very pleased that the BBC put this on. I've spent plenty of time in hospital being a parcel - I wish I could receive real consideration like that, every time! The man had a phobia. He didn't choose to have a phobia! You may be bald. You probably didn't choose to be? There are lots of personal characteristics that we are helpless to change. This man did manage in the end to go through with the op. 3 cheers for him!

Peter Gordon
A very interesting and really quite exciting [in that we weren't entirely sure - would he, wouldn't he?] programme. I confess to having had mixed feelings. On the one Chris's fear was genuine but on the other, others were being deprived of necessary treatment. I too have a real fear of the needle and of surgery. My fear is not of death, because it would happen without my being aware, but of being awake during the procedure and of having my body cut open. Even thinking, let alone articulating, the fact of the needle or the scalpel, makes me cringe. In my experience the medical profession i.e. doctors/nurses have no sympathy or understanding when I exhibit this real fear. Yet to me, to be frightened is a far more normal reaction than to be blase about what is to happen. When I went into hospital recently for a minor [though not to me] operation, the only two people who exhibited sympathy/empathy, were the porters. One who wheeled the trolley to the theatre and the other who wheeled me into the theatre. The first told me how he had felt before the operation which made me feel better, and the second, who had no doubt as to my fear, took my hand and told me to squeeze it when my fear became extreme. Even now, and I am not normally a sensitive flower, I feel quite choked when I think of his understanding. There is a very real need for the medical profession to understand that it takes 'all sorts to make a world'. My wife, knowing how I am, did not tell me that I was going to the hospital until the very morning of the operation. Although I swore that I wouldn't go, I knew that I would because I trusted the surgeon who I had met previously and from that moment I went into autopilot. This was an excellent subject for discussion

J SEGALL
I thought that the discussion was well balanced and showed how powerful a phobia of this sort can be. I suffered from toothache on and off for over 15 years and visited different dentists for anti biotics and pain killers rather than face treatment. Eventually I had to agree to an operation. On the day it was to take place I was like the patient in the programme. The surgeon and anaesthetist (and other members of the operating team) managed to deal with my phobia by allowing me to enter the operating room in my own time and in lieu of a general anaesthetic be given a controlled dose of a local anaesthetic allowing me to remain in control. I accept that the NHS has competing demands on time and resources. However, the respect shown to the patient in the programme (and to me with my op) is simply treating someone who is fearful with respect. No one wants to be unwell or suffer pain. Some of us just need a push and lots of patience. We all get there in the end.

Sandra Alexander
Thank goodness we have the ultimate legal freedom to refuse medical intervention and treatment if it is against our own better judgement. Although Chris had agreed to surgery after pursuasion from all around, perhaps in his heart he felt he was putting himself in danger, and his 'phobia' or fears were simply a life-preserving instinct kicking in. It is assumed that anyone who refuses surgery cannot be rational. Possibly it is the reverse - often cancer remains latent and dormant in the healthy body,for the whole of the person's life, unless awakened by the prodding and probing of the testing carried out.(Do we know whether Chris's cancer had in fact spread during the time he postponed treatment?) Nothing should scare us more than the possibility of being forced to receive medical attention, especially if general anaesthesia is involved. A very interesting programme.

John Blackburn
An excellent account of the issues, however there was some confusion about phobias. A phobia is a one-off learning experience in the past - eg being trapped in a lift can lead to later claustrophobia. Anxiety, however arises from the anticipation of a future event. These are distinct states which require very different treatment. Fear of flying is anxiety when someone grips the seat througout the flight until it is over. Someone with a flying phobia would never get on the plane in the first place. Since the phobia is basically an automatic flight response at an unconscious level it will not be resolved by any rational discussion therapy. The treatment has to be rapid, either minutes or less than half an hour. Any process which takes hours will not be very effective. Fast phobia cures have been known for over 30 years and should be available to any skilled medical practitioner. Unfortunately the medical approach to phobia of gradual desensitization is not very effective and merely torments the patient unecessarily. Chris mentioned a history of relatives undergoing surgery - a possible source of his problem. After the operation he seemed to be free from his phobia. A drastic cure!

Mike Juliff
What an excellent, well balanced programme! No sensationalism, just good informative debate. This is the BBC at it's best. Worth the licence fee far more than most of the moronic game and comedy shows. I would like to see the commercial stations try to produce anything as good.........

sue karle
I work in a hospital as a radiographer and see many patients who are terrified of surgery . I also am a qualified counsellor, and have been asked on several occasions to see patients with this fear of surgery. I talk them through their fears and try to reassure them on the facts of their condition and how action or inaction will affect them. It takes time to gain their confidence and cannot be rushed or pressurised. I make a bargain to be with them as they are admitted and to stay with them right into the anaesthetic room. I will be the first person they see after surgery , in the recovery area. This seems to give them the confidence to go through what they fear most ,and has worked each time I have used it . I realise that this man had a deep seated phobia, but I wonder if this more gentle approach might have helped. I have found that what the patients that I have seen needed most was to have someone who was there exclusively to "look after them" even when they were under the anaesthetic.I have even promised and been in theatre while the surgery is carried out.

N Clews
I am appalled that so much time, effort and resources were wasted on a person that had no regard for the impact his actions were having on the NHS. At no point did he show any consideration for all the other people he had impacted by the wasted surgery time he had caused. Chris should think himself very lucky because I believe that people who do not attend NHS surgical appointments should be sent to the private sector and pay for the treatment they require. I am sure Chris would have attended the first time if he had been paying for the treatment. Finally why was the wife not challenged in the programme for the lies regarding their child being ill with meningitis?

Bill Major
Marvelous programme.I'm glad that he did have the op in the end (albeit after 6 attempts) Frustrating and annoying also, this was a man (with the collusion of his loyal wife who lied with him about their child having meningitis, how awful to lie about your child?) who wasted an incredible amount of time and money not to mention the strain on the medical staff. The financial side was not discussed as much as it should have been.Perhaps the costs should be laid at his door after so many no-shows, that might have concentrated his mind.

John Greenwood
Anger. That's what I felt when I heard the story of this selfish fellow Chris causing mayhem with the hospital operating team waiting patiently to try and save his life. The cost of cancellations and knock-on effect to other equally deserving patients waiting down the line to be treated just makes me boil. I've been a patient waiting for an operation too which has had to be cancelled - probably due to people like Chris. Surely three strikes and you're out should apply.

ingrid w
I too was riveted to this programme, so much so that I parked up at work and waited til it had almost finished, and then listened to the rest of it at home through iplayer. I agree with the comments re : the man wasting NHS resources time after time, with detrimental effect on other people on operating lists; and the deceit about the son with meningitis. What I took away from listening was that the surgeon and anaesthetists, whilst being 'caring' probably should have stopped after say maximum 2 attempts and called in other specialists in dealing with the man's fear, rather than going to the 5th or was it 6th attempt. I do feel that 5 or 6 wasted tranches of NHS time is completely unacceptable and that the surgeon and anaesthetist should not have had the authority to keep continuing to make the surgical appointments without a wider review of the case and why the cancellations kept occurring. Resources are not finite and there need to be better controls. Whilst the surgeon and anaesthetist appeared to sound triumphant that they had achieved something for one patient; by their actions large numbers of other patients continued with their suffering; and we the taxpayer spent money on an empty operating theatre. Great. I see this as an example of why we need 'business' as well as 'clinical' management in the NHS.

John Coutts
I thought the programme was superb; thought provoking, well-structured with excellent lucid contributors. The most obvious question is: at what point should the NHS staff take into account resource costs?

Michael Loveridge
My overall feeling having listened to this programme was that common sense appeared to have been almost entirely abandoned by the people taking part in the discussion.It seemed to me that they had lost sight of the ultimate object of the exercise, namely the need to carry out surgery to save Chris's life. They were far more concerned about abstract notions of whether he could exercise the right to refuse surgery having earlier agreed to it.If their conclusions had been followed Chris would probably have died. I would be interested to know whether their satisfaction at having reached an intellectually satisfactory conclusion would have outweighed their regrets that it had resulted in an avoidable death.As a secondary issue I was also struck by their complete disregard for the financial implications of their deliberations. They seemed quite happy to allow Chris's irrational behaviour to be indulged indefinitely, notwithstanding the huge waste of NHS resources that this incurred and the fact that he was depriving other patients of potentially life-saving surgery.I was pleased to hear that the real life medical team that was dealing with Chris took a far more sensible - and to my mind far more compassionate - approach that resulted in his life being saved.It seems to me extremely dangerous to allow decisions like these to be treated as a purely intellectual and legalistic exercise. Although the `paternalistic' approach of years gone by was sneered at by the members of the team it was that approach that would have saved Chris's life, not their self-obsessed deliberations.

Trevor Silkstone
This Chris is a lucky man to have all those people concerned. So many more people out there refuse hospital treatment for one reason or another. I refused it in 2004 after having the hospital cancel 11 appointments, then get admitted to a ward which had a notice above the door stating there was an infection on this ward. Being a registered nurse, I realised why. When I got into the ward, it was filthy, dingy, and grossly overcrowded. In fact it looked similar to wards of the Victorian work house era. The ward clerk treated me like a dog. I was kept waiting by a bed to be admitted and just ignored. After 30 minutes I left. I was not going to stay there. Neither did I get any feedback or questions to ask why I did not stay. I consider Chris a very lucky man. I hope he goes on well.

B Rogers
I feel quite angry that so much time was wasted on this person which had a detrimental effect on other patients who had to wait for their operations. I don't feel that he ever acknowledged how his behaviour affected those patients desperate for timely treatment. But I feel most angry with the wife for lying by omission regarding the son allegedly ill with meningitis in another hospital. The programme did not challenge her on this to find out why she enabled her husband to avoid surgery all the time and waste NHS resources. Perhaps an invoice for wasted operating theatre time and un-used ward beds might have shocked them into taking more responsibility for their joint behaviour.

ALAN PEIRCEY
What's the problem? He hired his own hypnotherapist. After the first cancellation he should have been told to go find a private clinic. There should be an offence equivalent to 'wasting police time' for the NHS

dom Green
A great programme, with a lot of very useful information. I work alongside several people who, through various disabilities, are unable to listen to the programme and who have an interest in the issues covered: does the BBC plan to make available a transcript of the discussion?

Josephine Crawford
Although I found the programme very interesting I was not surprised by the fact that the doctors are doomed if they do and doomed if they don't. Like all people I use the NHS and unlike many I am aware of the fact that a missed appointment cost us the taxpayer at least £150, lord only knows what a missed operation costs. People get charged for wasting police time don't they? This may sound harsh but I am sure that this case is not an isolated incident and many other people have far less clinical excuses for missing operations. The health service is full of dedicated individuals who are often undermined by the bureaucracy and litigation concerns. When are people going to step up and realise one, healthcare is not free and two, take responsibility for their own actions? We have leant too far in the my rights vs my responsibilities balance towards the assumption that individual rights come first.

Mary Nicholson
I have suffered the fear described in today's programme and have found a highly skilled homeopath can make a considerable, apparently almost unbelievable, difference. On the more pertinent issue of what hospitals can do in such circumstances I strongly urge all medical personnel to read Isabel Menzies Lyth's seminal paper 'Social Systems as a Defence Against Anxiety', from Karnac Books. Engaging the user of the medical services in the planning more fully helps - so that the user owns the dilemma of wanting the treatment and having to find a way to access it. This is not an insuperable problem but it does require courage, imagination and, most importantly for the hospital staff - and as frequently mentioned in your programme - the full backing of the institution to do something out of the norm. This is a very important issue and I hope the discussion will be taken up within medical institutions.

lucy beaghen
I have just listened to this programme fuming at the gills! I find it unbelievable that this selfish man was given so much NHS time, effort and resources! I am trying to get NHS attention post op for a hip that is still very painful. Can I get any attention---no. I was initially sympathetic with his "phobia" but after he continually lied to the very people who were trying to save his life any sympathy disappeared.

Berenice Wareham
Had the operation not taken place would the patient have been offered treatment for the cancer e.g. chemo or just palliative care in view of the fact that he had been 'unco-operative'?

Evelyn Fayers
What a brilliant exciting programme. I had to stop and listen to every word; many thanks to all concerned. Very very interesting. Having just lost my husband to cancer, I wish the patient a long and happy life.

alice hudson
I am waiting to have a hip replacement. I have not yet made an appointment for reasons of fear. Intellectually I know it's a simple operation for the surgeon but the thought of being anesthetised and 'knifed' horrifies me. (I have a terrible fear of sharp knives and have no idea where they came from.) I also have the added problem that my surgeon (the best in the area) does not speak English, though I do speak some French, and he is a bit abrupt. I feel terribly embarrassed to feel as I do and am trying to get up my courage to talk to my GP, who is a very understanding man. After all, I am privileged to live where there is an excellent health service so also feel guilty at being such a wimp.