When Jo Moore infamously sent a memo saying in effect that 11 September 2001 was a good day to bury bad news, she inadvertently lifted the veil on a time honoured practice of releasing news and reports in the midst of major national or world events in the hope that the news media fail to pick up on them or make enough of them to garner the public’s interest.
So it was that in the midst of one of the most tumultuous days, in the most tumultuous week (yet) of one of the most tumultuous years in recent British politics, the British Medical Association (BMA) and the Royal College of Physicians (RCP) chose to release their guidance on the withdrawal of clinically assisted hydration and nutrition (CANH) from patients with prolonged disorders of consciousness (PDOC). Only the Guardian released a well pre-scripted story to mark this – the rest of the media were focussed elsewhere!
CMF made a submission to the BMA when it was seeking evidence for its new guidelines – needless to say we had significant concerns about what was then being proposed. We have also blogged before on our concerns about this guidance, coming after a Supreme Court ruling in July this year that such decisions no longer need to be taken to the Court of Protection but can be left in the hands of clinicians, in consultation with families. The new guidance replaces the rules established after the Tony Bland case in 1993. Under them the Court of Protection approved the removal of CANH from over 100 people.
This latest ruling affects up to 24,000 patients with two types of PDOC – permanent vegetative state (PVS) and minimally conscious state (MCS). However, in a worrying development the BMA have extended the guidance to include those suffering with severe strokes and dementia, so many, many more patients could be affected in the long term.
People with PVS (awake but not aware) and MCS (awake but only intermittently or partially aware) can breathe without ventilators but need to have food and fluids by tube (CANH).
These patients are not imminently dying and with good care can live for many years. Some may even regain awareness. But if CANH is withdrawn, then they will die from dehydration and starvation within two or three weeks.
Until last year all cases of PVS and MCS have had to go to the Court of Protection before CANH could be withdrawn.
The BMA brought forward their guidance following the ruling in two cases last year (known as M and Y). The High Court ruled that if the relatives and medical staff agreed that withdrawal of CANH was in the patient’s ‘best interests’ then the court need not be involved.
The Official Solicitor appealed this decision to the Supreme Court , but the judges upheld the decision of the High Court.
The effect of this his new guidance is that it makes no difference in principle between turning off a ventilator and removing a feeding tube for food and water, as both are now regarded as ‘forms of medical treatment’. It also fails to treat patients with PVS and MCS differently to people with ‘severe stroke’ a ‘degenerative neurological condition’ or ‘other conditions with a recognised downward trajectory’.
It fails to recognise the latest peer reviewed research from the American Academy of Neurology (AAN), the world’s largest association of neurologists and neuroscience professionals, which just this summer published a paper detailing the difficultly in reliably diagnosing the extent of brain damage in patients.”
It found four in 10 people who are thought to be unconscious are actually aware. One in five people with severe brain injury from trauma will recover to the point that they can live at home and care for themselves without help. And went on to recommend that the term PVS should be dropped.
It is important that doctors and clinicians follow the latest medical practice, and this should be based on high quality evidence. What this highlights is the complexity of reliably diagnosing PVS and MCS. This is why this guidance is not just outdated but is error ridden.
It also misses the important ethical point that there is a clear difference between turning off a ventilator on a patient after brain death and removing CANH from a brain-damaged patient or someone with a degenerative neurological condition, or even those on a ‘downward trajectory’. Our concern remains that this guidance, while perhaps initially seeming compassionate and less burdensome than the previous regulations, actually removes protection from highly vulnerable patients and widens the scope of those who are affected. Some of these patients may be more aware and have a better chance of recovery than is initially apparent. It also opens the door a crack wider to legalised euthanasia in the UK, which may be why Dignity in Dying has been so welcoming.