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I found this very depressing and distressing. People with learning difficulties need much more assistance in hospitals. My daughter with learning difficulties will need a heart operation next year and I'm dreading it. I need to explain what will happen to her in lots of different ways eg symbols, words, photos and videos. I hope the hospital will be able to help with this, well in advance, as she does not cope well with tubes, attachments, blood etc

What a sad start and provocative start to a new series.
Why did the Ethics Committee not spot at the outset that the medical profession was failing in its duty to treat Monty with the care and respect it would have accorded someone who wasn鈥檛 鈥渁utistic鈥�? If Monty鈥檚 impairment had been blindness, his treatment regime would have been adapted to suit his needs. Instead he almost died as a result of the treatment. Would a blind person have been judged as 鈥渓acking capacity鈥� if (s)he continually bumped into things if the treatment required running around in a strange place?
The clinicians only saw double pneumonia and embarked on their treatment regardless. The hospital was worried about the risk Monty posed to staff; Monty was moved to a side room 鈥渟o we could control him鈥� with the added bonus that it would remove 鈥渢he anxiety of what others might think鈥�. Even his restraints were delayed for 24 hours whilst someone checked for the correct catalogue number.
Monty鈥檚 response the 鈥渁ssaults鈥� of strange people in a strange place should have been assessed and predicted. Why, after the first failed attempt, did no one consider whether treatment at home in with his loved ones in familiar surroundings was not more appropriate?
Tony Holland admitted as much at the end of the programme when he acknowledged that restraint should only be 鈥渋n the context of all other things that could be done to help Monty understand... it should be for the briefest period of time...you should think of how you get Monty out of bed and back home as quickly as possible so that he is back to a familiar environment鈥�.
Exactly, so the first question is why that didn鈥檛 happen.
Secondly, why is so little resource, knowledge and respect accorded to people who have 鈥渁utism鈥� or a 鈥渓earning disability鈥�? Compare this with the resource, knowledge and respect focussed on people whose treatment is a result of natural causes such as infertility or avoidable issues such as smoking and lack of exercise. This vital human rights issue was completely missed.

Good God! This so called Ethical 'hypothetical scenario' programme involving a 29 year old critically ill autistic male called Monty utterly infuriated me: it was like a painful hour-long wallow in a pool of vascillating jellyfish!

What was the criteria? Should he live or should he die, and did anyone care? Yes, someone did, or they wouldn't have brought him in, and were also able to explain that he was autistic, was over the age of consent but not necessarily able to understand what was in his best interest to ensure his future life. (Did he want a future life? Well, lots of us don't, but you ,the bloody Medical Profession, insist that we all do have to have one, compus mentus half-dead or not! So why make a 'headline' exception for someone who is just autistic?)

If his 'knowing' Carer/parent has insisted that he would want to live, if fully compus mentus, and its not unfeasible to medically render him so, then I think the Medical profession should have the balls to do so, and if restraint needs to be incurred, then to restrain him to heath. Cruel to be kind... Hippocratic Oath inviolate... Yes!

To anyone else of fully 'sane' mind? No. If they want to die, then let them. And to Carers? Sometimes, knowing the person, you show a far greater love in letting them go, than in fruitlessly hanging onto them...

If Monty isn't capable of understanding that the treatment is in his best interests due to the degree of Autism he has, then I think he should have been restrained if there really is no other way to solve the problem. I didn't get the impression that the medical staff were being insensitive to his condition. I mean, you don't let a 4 year put their hands on a burner, and if they have to get a shot, they get the shot, end of discussion. Surely the staff would have shown insensitivity to his plight if they had NOT attempted to put the mask on him the second time? If on the other hand Monty was capable of understanding what role the mask was to play in his recovery, and if he chose to risk not using it to aid his breathing, then that's his lookout. One's life is one's own...more importantly so in this cruel age of austerity and cut backs. We're not here to assuage some politician's feelings of guilt, if indeed they have any...

I was interested in this debate on restraint, But I don't understand why the changing of the atmosphere was not discuss for Monty. 'the mask' was hardly ever questioned as the delivery method of oxygen, could a inflatable oxygen tent of an appropriate size be used, Michael Jackson had one every night! I understand oxygen is a stable element at 21% in normal atmospheric conditions but in high concentrations is very flammable, after the ventilation a 40% oxygen concentration required to aid recover is this a reasonable safe level? Could the 40% concentration be maintain in a oxygen tent and can medical staff operate in these conditions? Modifications would be need as electrical equipment would have to be kept out side and its services piped in. surely the initial cost must be counteracted by the repeated sedation, repeated ventilation, secondary infections, tracheotomy and the large amount of work hours and consultation require and not forgetting stress for Monty. Is a oxygen tent a viable option?

As for myself I understand the need for physically restrain in the correct situation after good consultation. Visibility should be its strongest safeguard.

This was a shocking programme on several counts:

- Monty nearly dies because medical staff are unable to deal with his specific needs

- It is not the need of the patient for quiet, predictable, supportive surroundings that gets him transferred to a side room but the staff's worry about possible reactions from the public on seeing him restrained.

- Instead of applying common sense to the fact that he cannot grasp the consequences of refusing the breathing mask he is repeatedly (!!) put through procedures which put his health at risk through prolonged intubation and recurrence of pneumonia

- When weighing up physical restraint and "chemical" restraint through sedation staff mention the "side effects" of wristbands: the skin could be irritated. Wow! What exactly are the possible and real side effects of sedation? The list would be very long I suspect, but they are not even thought about it would appear.

- It was claimed his "shackles" would have to be removed to check for skin irritation - surely they wouldn't have been so tight that they couldn't have been moved by a few inches for a check?

Can it be a serious consideration to put someone's life at risk to avoid irritation of the patient's skin and feelings of discomfort in other people? Is that proportionate?

The medical profession should have the best interests of the patient at heart. The hippocratic oath does not mention the comfort of staff and the public at large - maybe medical staff need to be reminded of that?

Listening to the programme I got more and more irritated and was wondering whether "Inside the ethics committee" was quite the right place for reporting the case. I suggest it should be moved to a new series "Unprofessional practices in hospitals". Seriously, I suggest there should be a real debate about the problems involved in this case.

We should also not forget that anyone can get into a similar situation - as was mentioned the after-effects of sedation for on OP can be hallucinations. Anyone suffering from those can only hope that medical staff dealing with them have more common sense than those who prolonged Monty's ordeal.

I don't believe anyone mentioned the possibility of trying to treat Monty in an oxygen tent. They were pretty much obsolete when I was nursing 30 years ago, but why wasn't it considered to be a viable option? Is it because of a failure to think in historical terms, or because of a fear that it might be difficult to deliver a consistant percentage of oxygen and if so, would it have mattered?

They could have placed it over Monty while still on the ventilator so he could get used to it while sedation was reduced. Being autistic he might have welcomed the sense of isolation from a busy ICU unit it would have afforded. It goes without saying that it would have required a proper assessment of safety and constant observation, but if successful it would have well worth it. Sometimes old technology works well enough where modern technology just isn't suitable. They should have forgotten ethics for a moment and given more thought to practicality and kindness - what nursing used to be all about.

On the subject of restraint, I once saw a 10 year old autistic boy strapped into a padded chair on a visit to a residential hospital, which is now closed. He was restrained because he had blinded himself by banging his head repeatedly against a tree in the hospital gardens. Tying him up was just preventing him from experiencing the world around him, already restricted by his blindness. All wrong. He could have harmed himself further if let loose, but would that have been wrong if he wasn't inhibited by the pain of his actions? Alternatively, he could have been penned in a soft area of containment instead and supervised more closely, at a much higher cost, to prevent the danger of choking on any detached materials. Both cases so very sad.

I thoroughly enjoyed this programme, possibly the best radio I have heard all year. In contrast to some others I found the professionals to be thoughtful and very caring, they struggled to do the right thing for their patient and were very aware of their legal obligations. There is no way such a pneumonia could have been treated anywhere other than an ITU

Re the general situation you're describing, I'm not autistic but I've been a patient in situations that you've described. What disturbs me is the view you're presenting that the medics seem to have the view that it's better for the person to alert, breathing and restrained no matter how uncomfortable it may be. I think there are wider questions here that need to be addressed

I am a senior intensive care nurse and lecturer in intensive care nursing and I am a parent to a child with severe communication and socialisation difficulties on the autistic spectrum. I have recently had the need to take my child to hospital after they knocked themselves out. From the paramedics to nurses to medical staff it is very apparent that they are all exceptionally good at their job but completely hopeless at managing a situation that they do not understand or fits within their preconceived norms. When I told the medical staff not to ask my child direct yes/no questions as they always answer 'yes', the medical and nursing staff were unable to adapt their questioning style so they got a mixed picture that my child felt ill and better at the same time. Things only become clear when someone who was familiar with the child got involved.
In this case it is very sad that the learning disability nurse and carers, who I would imagine had no experience of intensive care and may have been slightly reticent and intimidated about pushing their case, weren't given a higher profile in the management and communication with the patient. It is clear from listening and reading the story that the medical and nursing staff seem to be having difficulty in distinguishing between psychosis which is very common in intensive care patients and someone who has a learning disability and does not have the ability to communicate in a way doctors and nurses understand. My advice is speak to a specialist and allow the specialist to lead the situation and don't try and get patients with learning disabilities to conform to our perceived norms, it will not happen. You need to learn new ways of doing things. I have been in situations of managing patients with acute psychosis so many times in my 25 years of intensive care practice and from the learning I have had to do with my child I now manage things very differently. I now tolerate the different ways patients react and change the way I work and communicate and I believe I have managed to prevent re-ventilation many many times.
I am angry that the discussion turned to mental capacity. The issue here is not whether the patient was mentally capable of making decisions for himself it was whether the medical/nursing staff were able to convey their message to the patient in a way he could understand. This is an issue of autonomy which was completely ignored in the programme. We have the ability to adapt our practice, imagine that the patient was incapable of speech, you would explain the situation to him and break down the barrier by enabling him to answer by writing or using sign language. In this story the barrier was preventing any messages getting across to the patient. This was a situation that was outside the knowledge, understanding and capability of the intensive care staff. Alternative methods of communication need to be explored and you can't hide behind the capacity argument.
It may be that restraint and latterly tracheostomy was eventually the only option, however I suspect that not all avenues were explored before reaching this point.

A recent comment on evidence given by a rep of G4S regarding their current problems said that he seemed to be speaking another language and this is how I felt about this committee. The G4S man was speaking some sort of management-speak and they some sort of health-speak. In both cases such language only serves to obfuscate the issues - and present the persons speaking as having some obscure knowledge to which we, the lay people, are not privy to - when in fact the arguments can usually be brought down to a common sense level. A few years ago I witnessed a patient being sectioned in order to get him to receive treatment. The psychiatrist treating him soon returned him to the treating department with the comment that he was saner than they were. In contrast another patient who intended refusing treatment because of the discomfort encountered (which could have been remedied by a small expenditure by the health facility concerned) was told to get on with it. The refusal would have meant death in a few weeks. It was far easier to section the first patient than to make some adjustments to the treatment centre for the second to receive treatment in comfort. So much for ethics.

Generally I find the series interesting and the first case of 'Monty' mirrors similar issues to those we hear locally. However I am surprised that the panel is always of "experts" and that there is no 'lay' representation.
I belong to the ethics committee of a large foundation trust hospital and there are always at least two completely non-medical lay representatives. This helps to ensure that all issues raised can be viewed from all angles - including from the viewpoint of the patient or relative. In future series perhaps this should be considered?

Hi - I really enjoyed this thought-provoking programme and thought the decision-makers showed great care in their deliberations. My main concern was the very superficial and fleeting reference to 'deprivation of liberty'. There was no mention at all of the Deprivation of Liberty Safeguards (DoLS), which are part of the Mental Capacity Act and which can and almost certainly should have been considered in this case. If you restrain someone in a situation like this, to the extent that it amounts to deprivation of liberty, it is not lawful to do so without formal legal authorisation, no matter how good your intentions. For people in hospitals and care homes, DoLS can be used (in other cases a court order may be needed, but I think DoLS could have been used in this case). This is a way of ensuring that someone who lacks capacity to consent to the arrangements for their care, and who is on the receiving end of such an extreme form of restraint, at least has some formal legal protection - a qualified Best Interests Assessor would then have been involved, to determine whether the arrangements for the patient's care (or what was being proposed) amounted to deprivation of liberty and, if so, whether this was in the patient's best interests. Even if the actions of the clinicians were ethically sound, they may not have been acting within the law by failing to invoke DoLS. I also think this was a missed opportunity to raise awareness of DoLS, an important but poorly understood part of the Mental Capacity Act.