‘The Doctors can’t tell us anything – we really don’t know.’

This was not the comment of a mother exasperated at the care received by her son, on the contrary, Alex experienced exemplary care.  Yet this ‘not knowing’ and associated uncertainty is just one of the impressions left with the viewer after watching Tuesday night’s Panorama Special – ‘The Mind Reader: Unlocking My Voice’.

The programme looks at the cases of patients who, as a result of severe brain damage, are in what is known as PVS (persistent vegetative state – see below for more information) and the pioneering work of neuroscientists attempting to determine brain activity.  Following these patients and their families as they wrestle with the intertwined hope, sorrow and love their day-to-day lives entail, the programme focuses on the work of Professor Adrian Owen and his team.

Using fMRI (Functional Magnetic Resonance Imaging) to scan the brains of PVS patients, Professor Owen found that some patients – despite appearances and previous behavioural assessment and responses to the contrary – were not in a vegetative state.  By analysing brain activity when presented with specific questions, Professor Owen was able to show that Scott Routley, a 39-year old Canadian man, had a conscious, thinking mind.  Indeed, Scott was even able to answer questions clinically relevant to his care by confirming he was not experiencing any pain.

Interesting and incredible, yes, and of course wonderful for families to know a loved one isn’t in any pain, but why is this important?

Care meted out by doctors relies on, amongst other factors, an accurate assessment of a patient’s condition.  Having performed a cognitive assessment of a number of PVS patients for his research Professor Owen noted that it ‘doesn’t mean that all vegetative patients are conscious but a significant minority do seem to be’.  This in turn raises significant questions about the care of PVS patients.

‘Not knowing’ can be haunting for families as they attempt to cope with the often unexpected trauma experienced by a loved one.  However, it is precisely this ‘not knowing’ whether someone is aware or not which must call into question cases where food and fluids are withdrawn from severely brain-damaged (but not dying) people.  This precedent was established following the judgment in the case of Tony Bland, a young victim of the Hillsborough disaster who suffered severe brain damage.  In the 20 years since the judgment, more than 40 PVS patients have died in this way.

Professor Owen’s research indicating awareness among a significant minority of PVS patients, allied with the extraordinarily hopeful outlook (wonderfully validated in some cases) of the families featured in the programme, must strengthen any calls for a review of the Bland judgment.

Note that this research is not an avenue by which decisions about the end of life might be made.  Professor Owen notes that patients might be able to answer ‘yes’ or ‘no’ but it is not possible to fully test cognitive faculties and determine whether patients have the understanding to decide whether to live or die.

However, if there is any doubt whatsoever as to what is best for a patient, the aim must always surely be to err on the side of caution in order to preserve life.

Do watch the programme and feel free to post your comments below.

The Panorama Special – ‘The Mind Reader: Unlocking My Voice’ – was broadcast on BBC One on Tuesday 13 November.  It can be watched on BBC iPlayer until 13 November 2013.

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NOTE:

What is PVS?

PVS patients appear to be awake with their eyes open; however their awareness and experience is no different from someone in a coma.  That is, they are unaware of surroundings and bodily sensations and are unable to follow or understand speech as well as being unable to have thoughts, memories, emotions and general purposeful response to visual, auditory, tactile or noxious stimuli (for a brief overview, click here).  It is often described as being like a ‘twilight world’ wherein patients are simultaneously awake and yet unaware.

Following the revelation of allegations of corrupt practices by a large remote gambling company by US authorities, and after many British gamblers were frozen out of their accounts, the Gambling Minister, John Penrose, has revealed the Government’s proposals to reform internet gambling (also called ‘remote gambling’) regulation and the licensing regime in the UK. In a written statement made on July 14^th he said:

“I am proposing that the Gambling Act should be amended so that remote gambling is regulated on a point of consumption basis, so that all operators selling into the British market, whether from here or abroad, will be required to hold a Gambling Commission licence to enable them to transact with British consumers and to advertise in Great Britain.

He continues:

“These proposals are an important measure to help address concerns about problem gambling and to bridge a regulatory gap… previous work by the Gambling Commission has highlighted deficiencies in some remote operators’ arrangements for preventing underage play, and, for the first time, overseas operators will be required to inform the UK regulator about suspicious betting patterns to help fight illegal activity and corruption in sports betting.”

The announcement comes as no surprise to CARE. We responded to the Government consultations that closed more than a year ago and have been awaiting a Government response to the consultation process. While the announcement is welcome, none of the details of how the Government intends to implement a ‘point of consumption based regulatory framework’ have been given. This is a particular worry because there are many companies providing online gambling services that will be able to ignore the requirement to apply for licensing under the UK Gambling Commission because they are based outside the UK. While some mechanisms were included as options in the year old government consultation, such as blocking financial transactions to and from unlicensed providers, or blocking websites at an ISP level, these were not mentioned by the Minister in his statement yesterday.

What is clear from the announcement is that these changes will require primary legislation and therefore it will take some time for them to be made. It is also likely that Parliament’s Culture, Media and Sport committee, which is currently holding a consultation on gambling, will produce a report later this year, or early next year, which will make further recommendations.

• To read the whole article in the Guardian, including analysis of how this might effect the Treasury go here.

• If you would like to read the written statement made by the Minister click here.

• If you would like to read more about CARE’s work in relation to remote gambling go over to our website here.