Finding a voice for the brain injured

 

The moment when Prof Owen asked patient Scott whether he was in pain

What does it mean to be vegetative? To wake from a coma, open your eyes and yet have no apparent awareness?

What is the impact on the families of such patients, not knowing if their loved ones recognise them and whether the words they speak are understood or fall into a void?

Insights

A Panorama Special on BBC1 on Tuesday sets out to explore these issues. I spent more than a year following brain injured patients in England and Canada.

The resulting film gives remarkable insights into what has previously been a closed world.

Let's start with what vegetative and minimally conscious patients - where fragments of awareness remain - are not. They are not in a coma. They are not on life support machines and they do not lie apparently lifeless in a hospital bed.

This group of patients have all suffered brain injuries, usually as a result of a trauma such as a car accident, or perhaps after a stroke or viral infection.

They differ from so-called 'locked-in' patients whose brain function is intact but are paralysed and communicate usually through eye or small head movements.

With vegetative patients the brain injury causes sufficient damage to leave them with nothing but core reflexes and no higher cognitive function.

Unprecedented

They may move their limbs and eyes, but it cannot be done to command.

For families and medical staff it is often very difficult to assess whether a patient is vegetative or has some residual awareness and ability to communicate.

The Royal Hospital for Neuro-disability (RHN) in Putney, London, which specialises in the rehabilitation of brain-injured patients, gave Panorama unprecedented access. With the agreement of several families we observed the painstaking assessment methods used by staff.

Senses

The RHN invented a complex assessment technique known as SMART, which explores all five senses.

Patients are asked to track objects with their eyes, to try to press switches, to look at photographs. They are also given things to taste and smell.

I sat in on some assessment sessions and it requires huge concentration from the occupational therapists - looking for the tiniest sign that the patient may be conscious.

In a separate news article I have written about the extraordinary brain-scanning technique which is being used to help some vegetative patients to communicate.

We follow the research of Prof Adrian Owen, dubbed the Mind Reader, who has showed that real time functional Magnetic Resonance Imaging can be used to detect hidden awareness in a minority of apparently vegetative patients.

But the use of fMRI should not be seen as an alternative to the established traditional methods of assessment used at the RHN.

Instead it is an additional tool for detecting awareness and providing a means for a minority of severely brain injured patients to show hidden awareness.

The is important because in the past two decades, more than 40 vegetative patients have been allowed to die after High Court judges approved the withdrawal of feeding tubes.

Tony Bland

This followed a landmark case involving the young Hillsborough victim Tony Bland, who was crushed in the stadium disaster in 1989, suffering terrible brain damage which left him in a vegetative state.

Before any judge decides to sanction the withdrawal of treatment, a thorough behavioural assessment is ordered.

But they do not ask for brain scans of the type used by neuroscientists in Cambridge and Ontario to search for hidden awareness.

It is possible that may eventually change.

Much will depend on the view of the working party of the Royal College of Physicians which has been reviewing the College's 2003 guidelines on low awareness states.

It is important to stress that none of the families I met had any interest in prematurely ending the lives of their loved ones.

Faith

What I repeatedly witnessed was the love and faith of families, unchanged by terrible events.

Panorama's Fergus Walsh meets Professor Adrian Owen to learn what the brain is like when in a vegetative state

I would like to thank all of them, the medical staff and the scientists in England and Canada who helped Panorama.

Many brain-injured patients do make a partial or near complete recovery, but that requires huge input from therapists.

I hope the programme helps change the landscape of care for these patients - highlighting their need for comprehensive assessment and, crucially, rehabilitation.

When patients are kept out of sight from the public and from the bodies which fund medical care, it is all too easy to overlook their needs.

The Mind Reader: Unlocking My Voice. A Panorama Special BBC1 Tuesday 13 November 1035GMT.

 
Fergus Walsh Article written by Fergus Walsh Fergus Walsh Medical correspondent

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  • rate this
    -4

    Comment number 14.

    Very very worrying...how many have been wrongly pronounced dead and then buried or cremated alive....Doctors have been callous and cavalier about this issue for many years and very often dismissed families concerns in order to 'keep to targets' and 'save on NHS cash' or just simply get off to the golf course.....

  • rate this
    -3

    Comment number 13.

    If this truly can be used as a reliable way of communication with some severIey brain injured people, I wonder when or if the obvious question -"Do you wish us to continue sustaining life" will be asked.

    And how we will deal with a "No" answer.

  • rate this
    +1

    Comment number 12.

    Amazing and a little scary. Imagine lying there while people debate whether to 'switch off' the machine keeping you alive. This discovery reopens the dabate on 'life and living'. If someone can understand what is going on, but cannot respond, how do we know they would wish to end their life ? But also, if they wish to end life do doctors have permission to go ahead. An interesting area for ethics.

  • rate this
    -4

    Comment number 11.

    I can imagine almost every message being "please kill me now." Keeping people alive when they have no physical or psychology means of actually living is something that needs to be addressed pragmatically.

  • rate this
    -3

    Comment number 10.

    Brilliant! so does this now mean that if through this amazing communication you request to be allowed to die peacefully, that those "listening" will actually let you? I have a feeling that any communication will be made to fit whatever the specialist(s) wants to hear and of course we have those who wish to protect life at all cost irrespective of quality or individual wishes.

  • rate this
    -2

    Comment number 9.

    It is not 'life' it is a machine running on with no driver. Just another reason to have euthanasia easily available, and for people to make living wills to absolve those doing it of the decision. Do not wait in such situations kill my body.

  • rate this
    -1

    Comment number 8.

    Vegatative survivors have my sympathy; only they can know what it is like to experience a sort of mental burying.

    Other sorts of brain damage are not getting any attention. Most people who suffered brain damage from vaccinations as infants have their lives affected in a most terrible way. They get a pittance of an award and are then left to the mercies of a learning disabilities service.

  • rate this
    -2

    Comment number 7.

    This man may be alive but he is not 'living' in any recognised sense of the word.

    Medical science can be a wonderful thing, but I fear this research will open a Pandora's box which may not necessarily be a good thing for anyone who is in this condition.

  • rate this
    0

    Comment number 6.

    The problem becomes them.

    If someone dies, then they are dead and gone - if they are vegetative then they are still there, a permenant reminder of what happened.

    You can mourn at a grave- but if they are still there, they still weigh on your thought. Time heals all wounds - but in the case of vegetative people, time leaves them alone.

  • rate this
    0

    Comment number 5.

    #3.alan

    You're seriously making a fuss about the addition of a definite article in front of the hospital's name? Get a grip. Maybe I shouldn't tell you there's also an article added in front of 'Royal College of Physicians', you might have a seizure.

  • rate this
    0

    Comment number 4.

    These definitions seem to have changed of late. Vegatititive used to mean, in effect "the lights are on, but noone's home" If you can communicate, no matter how, you cannot be Vegatitive.
    Locked in was "somone's there but can't communicate" and you could only tell this by MRI's etc. It's not the definitons that need to change, but diagnosis, and in many cases, the reporting.

  • rate this
    -6

    Comment number 3.

    The correct name of the UK hospital is Royal Hospital for Neuro-disability NOT as shown above!!!

    Surely not another example of sloppy BBC journalism

  • rate this
    0

    Comment number 2.

    Am I the only person to find this a bit depressing.
    Although I admire the science tremendously, the thought of these patients trapped for years inside their unresponsive bodies seems a dreadful situation.

  • rate this
    -1

    Comment number 1.

    Pleased to see the fruits of research and predicted application being realised in a much overlooked area of medicine and care of the living.

    Wonder if an injured brain, dependant on damage has the potential to make any improvement through positive feedback of aural, visual, physical and nutritional stimulus, now that forms of communication become possible?

 

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