- New guidelines from the Royal College of Physicians encourage people to
document their wishes in case of an injury that leaves
them in a coma - Just 3% of the public have indicated their wishes, compared with 30% of those who have gone through the
experience with a family member - The decision still has to be made by a judge but is more likely to be upheld if it is in keeping with wishes expressed in a will
By
Jenny Hope Medical Correspondent
13:14 EST, 13 December 2013
|
13:14 EST, 13 December 2013
Doctors are encouraging people to draw up living wills saying if they want food and fluids withdrawn in the case that they become seriously brain damaged
Doctors are urging people to draw up living wills saying they want food and fluids withdrawn if they become seriously brain damaged.
New guidelines encourage people to document their wishes in advance of a devastating injury that leaves them in a coma or vegetative state.
Such advance directives help determine what happens when doctors or the family believe withdrawal of life-sustaining medical treatment is in the best interests of the patient.
In any case, where food and drink is to be withdrawn, a decision must be made by a judge of the Court of Protection.
But patients who have clearly expressed in advance their wishes to refuse treatment are likely to have the application upheld.
A model planning document for Advance Decision to Refuse Treatment is included in new guidelines from the Royal College of Physicians.
The guidelines, which are also intended for families, set out how doctors diagnose and treat prolonged disorders of consciousness (PDOC), which include coma, vegetative state (VS) and minimally conscious state (MCS).
An estimated 10,000 patients a year with PDOC are being cared for in hospitals, care homes or in their own homes.
At present just three per cent of the general public has indicated their wishes in advance using a planning document, compared with 30 per cent of those who have gone through the experience with a family member.
Professor Jenny Kitzinger, co-director of the Cardiff-York Chronic Disorders of Consciousness Research Centre, who helped draw up the guidelines, said it was vital for people to consider what they want if they suffered a catastrophic brain injury – to help other family members carry out their wishes.
She interviewed more than 50 families who had a loved one in a vegetative state.
They included one family where the patient had made a formal advance decision to refuse treatment which they described as ‘very precious’, while others said the patient would ‘want life at any cost’.
She said: ‘It’s no use people saying to their families “if ever I’m a vegetable, switch me offâ€. That’s not a legally binding instruction.
‘None of us ever think this is going to happen to us so few of us ever make advance decisions to refuse treatment.
‘Around
three per cent of the general population do so but it’s 10 times higher
– 30 per cent – among those who had personal experience of a terrible
dilemma.
The decision to withdraw nutrition from a person has to be made by a judge but is more likely to be permitted if the person has previously stated that this is what they want to happen
‘People should think of an advance decision, formally witnessed, as a gift to those who might be faced with this situation.’
The guidelines put the onus on NHS trusts for the first time to initiate and pay for applications to the Court of Protection for withdrawal of treatment.
Previously it was a grey area, with hospitals sometimes taking the lead, or a family member who felt strongly and had the resources.
The court costs can run into ‘thousands of pounds’, say the guidelines, which stress that family members should be involved in meetings held by doctors and other professionals to decide the best interests of the patient.
However, if a family does not want to apply for a court judgement, the consensus of the meeting would take precedence.
Writing a ‘living will’ helps doctors and family members decide what to do in the case of an accident
Similarly, the family may apply for permission to withdraw treatment against the views of doctors with the court making the ultimate decision.
Simon Chapman, Director of Public and Parliamentary Engagement at the National Council for Palliative Care, said: ‘The overwhelming majority of us are still failing to tell anybody our wishes about the type of care and support we would want if we couldn’t make decisions ourselves, with just one in twenty of us having made any sort of written statement about this.
‘The result is that, when it comes to making decisions about the care and best interests of people with prolonged disorders of consciousness, those closest to them will have a key role to play at a time which is inevitably exceptionally upsetting and stressful.
‘The guidelines are therefore absolutely right to emphasise the importance not only of listening to and involving the friends and families of people with prolonged disorders of consciousness, but also of providing appropriate information and support to them on an ongoing basis, so that they are not left carrying unnecessary burdens of responsibility.’
The guidelines provide a question and answer section to help doctors discuss withdrawing food and drink from patients, which leads to the body shutting down and people ultimately dying of organ failure caused by dehydration.
This process can take two or three weeks, which can be very distressing for families, especially as patients sometimes show reflexes including increased movement, sweating or groaning that are not signs of consciousness.
Prolonged disorders of consciousness are usually caused by a sudden brain injury, though they can also occur in later stages of dementia and other neurodegenerative disorders. They are defined as lasting more than four weeks.
The guidance sets out the criteria for diagnosing a coma, which includes the patient not responding to painful stimuli, light or sound, and lacking a normal sleep-wake cycle.
At present just three per cent of the public has indicated their wishes in advance using a planning document, compared with 30 per cent of those who have gone through the experience with a family member
Patients in a vegetative state are said to be in a state of wakefulness but with a ‘complete absence of behavioural evidence for self or environmental awareness’.
Meanwhile, those in a minimally conscious state show signs of self or environmental awareness. They show inconsistent responses which indicate some degree of interaction with their surroundings.
The guidelines also recommend a new national registry for patients – at present there are no official figures on the number of patients with disorders of consciousness in England and Wales.
Professor Lynne Turner-Stokes, a consultant in rehabilitation medicine at Northwick Park Hospital in London, said: ‘The guidelines address some highly emotive and topical areas in which there is currently a dearth of formal research-based evidence to guide practice.
‘In this rapidly-changing field the recommendations are likely to need updating as new evidence emerges and as international consensus develops.
‘In the meantime, we have aimed to provide a practical and useful source of advice for clinicians who work with this complex group of patients.’
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Smile,
Mars,
21 hours ago
But we don’t have euthanasia in Britain……yeh, right!!
Trudi,
Worcester, United Kingdom,
21 hours ago
It isn’t a guarantee of anything and essentially it isn’t worth the paper it’s written on. The so called Liverpool Care has not been made illegal. This is a token gesture to kid people into thinking ‘the system’ cares about your wishes. The system does not. If the State wants you gone, then you are gone.
Chrissie,
Accrington Lancashire, United Kingdom,
22 hours ago
Those on death row get a better and more dignified quicker death than this.
Puddleduck,
This side of the pond,
22 hours ago
So Now they want us to ‘Sign Up’ to the Liverpool ‘Care’ Pathway Do They ?
G_1ntonic,
Dahnsouf, United Kingdom,
22 hours ago
I thought it was being practised already on the Liverpool Care Pathway.
Smile,
Mars,
21 hours ago
fed up,
England,
1 day ago
I would prefer a bottle of whisky and a jar of sleeping tablets, not a slow death from starvation and thirst, not even dogs are treated like that!
Fred,
Colony of EUSSR, United Kingdom,
1 day ago
Will voting for Milliband be recognised as a sign of brain damage?
Smile,
Mars,
21 hours ago
Reg,
Ashford, United Kingdom,
1 day ago
It would seem that a lot of hospitals already withhold food and water with out needing permission to do so, the difference is they call it care. We have had euthanasia for many years in this country under a variety of names.
Adrian,
London, United Kingdom,
1 day ago
In some hospitals there’s absolutely no transparency – a relative could only be told something like “Your mum said …†but without being personally involved there’s no knowing exactly what the doctors really said or did – disgusting.
Smile,
Mars,
21 hours ago
Jack Sprat,
London,
1 day ago
I strongly urge reading ‘How Doctors Die’, by Dr Ken Murray (now posted on the Internet). This article caused something of a sensation when it appeared a couple of years ago, since it gives the ‘insider’s’ – i. e. medical – dope on the subject, whilst dispelling comfortable myths, e.g. on cardiac resuscitation (I now wear ‘Do Not Resuscitate’ bracelets as a result). Meanwhile, this latest move is most welcome, and succeeds in moving this difficult and emotive problem forward as necessary.
Smile,
Mars,
21 hours ago
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