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
    0

    Comment number 34.

    26. Little_Old_Me - I might be inclined to agree with you in my current, fully functioning, state - but we should, where we can, take into account the thoughts and feelings of those who are in other situations. We don't need to 'function fully' to be alive, or to be human. If the mind is still alive within the body, it is simply experiencing life differently, surely?

  • rate this
    -1

    Comment number 33.

    My Mother wants to say - 'for those who say 'let them die', when it happens to one of your own, then see how you feel - until then you have no right to comment.

  • rate this
    -1

    Comment number 32.

    FURIOUS all people want to do is ask 'do you want to die?'' when those affected are struggling so very hard to LIVE! dont knock what you have no experience of !!!! To the parents of the young lad who didnt pass the test -keep trying. My brother was supposed to be blind deaf vegetative and dying - 12 yrs on he is improving all the time and despite the experts is able to see, hear and understand.

  • rate this
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    Comment number 31.

    If I was so unable to communicate with the outside world I would certainly wish for my life to be terminated. I do however appreciate this is a personal choice and everyone should be entitled to this choice.

    Maybe as part of a donor system or will, whilst of conscious and sound mind, you should also write how you would wish to be treated in such circumstances.

  • rate this
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    Comment number 30.

    My son went to RHN after 4 months in a vegetative state caused by brain injury; he underwent the Addenbrookes trial and everything changed after that, as they found brain activity which gave RHN something to work with -intensive stimulation and engagement followed. He moved out after 7 months into Brain Injury Rehab and now lives independently.

  • rate this
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    Comment number 29.

    @17

    Those in a vegetative state may not be cremated or buried alive, but they may be put to death in an inhumane manner by withdrawal of hydration (e.g. Terri Schiavo). Now we know the person might still be conscious and need to stop this barbarity.

  • rate this
    +1

    Comment number 28.

    Now that they know there is activity in the brain for communicating for these people, hopefully they can reignite the 'spark' to fire the brain back up. I watched this, and it choked me a little, and I was amazed. More money for research please and the best of luck to our brilliant brilliant scientists

  • rate this
    -3

    Comment number 27.

    The difficulty I have with this is for UK NHS patients - the cost!

    To keep someone alive like this for years costs a fortune. We do not have the resources to look after the conscious or for people with certain cancers who's quality of life could be significantly enhanced with drugs we cant afford.

    How do we square that circle?

    I haven't got the answer, but to me, this is the question.

  • rate this
    -1

    Comment number 26.

    24.hestershouse - ".....This does, however, raise questions of what 'life' is and who we are. Are we entirely of our minds, and our bodies just containers, or are our bodies an integral part of our 'selves'?....."


    Without both a body and a brain there is no us - both need each other to function fully in this world.

  • rate this
    +2

    Comment number 25.

    My 20 year old son is also in a vegetative state after a car accident 3 years ago. (He was hit by a train). This program gives us a bit more hope that we may be able to find out how aware he is of his surroundings. We care for him at home, and though he doesn't respond to our questions, he does pay attention to specific TV shows, and music.

  • rate this
    0

    Comment number 24.

    9. JamesStGeorge
    It's more akin to a driver with an unresponsive vehicle.
    This does, however, raise questions of what 'life' is and who we are. Are we entirely of our minds, and our bodies just containers, or are our bodies an integral part of our 'selves'? At least this research might eventually allow patients the chance to make decisions about who they are, and what they want. I hope so.

  • rate this
    0

    Comment number 23.

    Do you know the work of Arnold and Amy Mindell with people in coma. Written in 1999, Amy's book 'Coma' "...creates a bridge between relatives and caretakers and the inner journey of a comatose person. It includes special communication methods for assisting individuals in a comatose state to follow their inner experiences. This method assumes that the person is not simply lost to coma, but is.."

  • rate this
    0

    Comment number 22.

    I've just read other people's posts - I cannot believe people would seriously consider turning a persons machine off simply because they were paralysed 'in a vegetative state'. What a lack of imagination, it's quite scary - please stay away from me in hospital!

  • rate this
    0

    Comment number 21.

    Would this procedure work on Prince Johan Friso to communicate with him or is his condition too far gone?

  • rate this
    +1

    Comment number 20.

    Finally!! I hope they hurry up and create robots people can control and get out and about with, to stop the boredom & helplessness. Nr 11. of course they won't say 'please kill me now', only if they are depressed because of the diet they are being fed - as long as they mimic stephen hawkings blood serum content and they'll be fine!

  • rate this
    -1

    Comment number 19.

    11.Perpetual Sigh
    I can imagine almost every message being "please kill me now."
    **
    That's called projection.

  • rate this
    -1

    Comment number 18.

    Important area for research also being done in Aberdeen. Vitally important to the patient & their families. The film & book "The Diving Bell and the Butterfly" dictated by the locked in author is an amazing story. An introduction to the issues. The wonderful Kate Allatt in her books outlines her recovery from being locked in. Now in thoughts of my former neighbours daughter Alison.

  • rate this
    +1

    Comment number 17.

    @14. macbrack

    Yes, this opens up many questions, but the worry about people being "buried or cremated alive" is not one of them. Vegetative patients will be still breathing, and no-one will be pronounced dead (let alone be prepared by an undertaker) whilst they're still breathing.

  • rate this
    0

    Comment number 16.

    This is an interesting story. What woulkd it be like to be aware yet have no-one know? I was struck by a car in 2003 and as a result of my Acquired Brain Injury (GCS3) I was in a coma for 4 weeks. I know nothing of this except what is written in my brothers diary. This charts my ascent into the conscious world. We need to appreciate what we have got and understand that we do not know.

  • rate this
    +1

    Comment number 15.

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

    Isnt this one of the main criteria for working in the House of Lords?

 

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