The heartache of caring for 'vegetative state' patients

Iain Wilson lies on his side in bed. His mother stands close-by with her hand resting gently on his head. Gabrielle Wilson cares for her son Iain at home.

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As the Royal College of Physicians begins a review of the diagnosis and care of people in a vegetative state, the BBC asks whether the current system is failing patients and their families.

As a young, proud, super-fit marine, it is a life he never would have wanted.

Now in his 50s, all that is left of his adventurous past are the photographs on the wall.

Iain Wilson is in a vegetative state and relies on his mother Gabrielle for everything.

A former nurse, the diminutive 83-year-old wakes at 7.30am every day to begin a care regime which would challenge someone half her age.

She has not had a holiday for more than 21 years.

"I leave him in the bath about 20 minutes, take him out all dripping wet and helpless, put him onto the bed and dry him, and then I cut his nails," she says.

"I have to do his feeds and then, last thing at night, see he's alright, move him about and put cushions all around him to stop him getting bedsores.

"Then I have a last look at him at quarter to one in the morning, and if he's sleeping, I'm fine then and I go to sleep myself.

"If he's got a chest infection or anything wrong, I've got a baby alarm and I can hear him."

Iain Wilson wearing his uniform Iain Wilson in his youth

Iain is thought to be the longest surviving vegetative state patient in the UK, an unenviable record.

The former Royal Marine, who also served in the Foreign Legion, suffered severe brain injuries after being knocked over by a car in 1989.

The damage left him blind, incontinent and unable to move or communicate. He is fed through a tube in his chest.

Mrs Wilson would not want anyone else to care for her son, but after suffering a heart attack and conscious of her advancing years, her biggest worry is what will happen to her son when she dies.

"I think about it all the time. I just have to turn my mind off because it affects me so much," she says.

"He will not be looked after properly. I don't like to say it, but it's true.

"He'll lie there and suffer, unable to moan or groan or call for help and they won't notice.

"Picture yourself in that situation. It's awful."

'Traumatic'

This is just one of a number of heartbreaking dilemmas faced by the families of those left in a vegetative state.

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File on 4 is on BBC Radio 4 on 21 June at 2000 BST and Sunday 26 June at 1700 BST

It is difficult to find precise figures for the numbers affected, but experts believe there could be as many as 5,000 people in the UK enduring what has been described as a "living death".

And because of advances in medical science meaning that more people survive what would previously have been fatal injuries, the figures are set to continue to grow.

Expert clinicians have highlighted a number of concerns about the care of vegetative state patients and their families.

They believe some are being misdiagnosed as a result of inconsistencies in assessment across the country.

Watch: Helen Watson on letting her son die

There is also evidence families are not routinely being told of all the options open to them.

Since 1992, following the landmark case of Hillsborough victim Tony Bland, it has been possible for an application to be made to the Court of Protection for permission to end a vegetative state patient's life by withdrawing food and hydration.

This is done under sedation to ensure the patient feels no pain or distress.

There have been a total of 43 applications since 1992, all of which have been granted.

Professor Derick Wade, consultant in neurological rehabilitation, believes it is crucial to inform families of this and all of the options open to them at every stage.

But he has told the BBC of cases where families have been kept in the dark for years because of the religious, cultural or moral beliefs of the clinicians involved.

"For some clinicians [the withdrawal of nutrition to allow a patient to die] is not morally acceptable. So they do not discuss the issue with the family."

Start Quote

I think it's very traumatic for the families, it's quite a long, drawn-out process”

End Quote Professor Lynn Turner-Stokes Royal College of Physicians

This happened to 53-year-old Helen Watson from Leicestershire, whose sixteen-year-old son Christopher was severely injured in a road accident on his way back to boarding school in 2006.

The family only learned they could apply to the courts years afterwards when an expert was brought in to assess Christopher's accident compensation claim.

Professor Lynn Turner-Stokes is chair of the Royal College of Physicians working party which has been set up to review the issues around the diagnosis and care of vegetative patients.

She is concerned that even when families have made an informed decision to withdraw treatment and allow their loved-one to die, the court process involved can be beset with lengthy, yet easily avoidable, delays.

"I think it's very traumatic for the families, it's quite a long, drawn-out process.

"At the current time there is not a great deal of clarity about what the process should be, for example there isn't a clear protocol for what should have been done prior to approaching the court," she said.

"Personally I'd like to see some clarity about what the pathway is. I think it could help streamline things."

'Love and devotion'

For Tudor David, 65, the delays involved in an application to the court to allow his wife Diane to die after a road accident left her in a vegetative state proved too much.

Initially told the court process would take six months, the family was still no closer to a decision from the court 18 months later.

Mr David's family believe he felt his wife had suffered enough. In December 2008 he took her out of hospital, parked their car in the garage of their home and left the engine running.

The devoted couple died together from carbon monoxide poisoning as a result of what a coroner referred to as an act "solely motivated by devotion and love".

The Royal College of Physicians' review began in May 2011, and is expected to last at least 18 months.

Professor Turner-Stokes hopes the team's work will ultimately help improve the process which the David family and others believe has let them down.

File on 4 is on BBC Radio 4 on Tuesday 21 June at 2000 BST and Sunday 26 June at 1700 BST. Listen again via the BBC iPlayer or download the podcast.

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