By Trevor Stammers
Last month, the UK Supreme Court ruled that if doctors and the relatives of a patient in a persistent vegetative state or minimally conscious state agreed it was in the patient’s ‘best interests’, their food and fluids could be withdrawn without needing to go to court for permission to do so.
This week it was revealed in the press that revised draft guidance from the BMA is recommending that doctors should be able to end the lives not just of such patients in vegetative or minimally conscious states – but also of those who have multiple co-morbidities, degenerative neurological conditions or dementia.
Such proposals have been denounced in press coverage as “euthanasia by stealth” – a position made much more understandable by a report on the care of patients with Prolonged Disorders of Consciousness (PDOC) published this month by the American Academy of Neurology (AAN), the American Congress of Rehabilitation Medicine and the National Institute of Independent Living and Rehabilitation Research which ironically went online only a few days before the revelations about the draft BMA guidance. Its assessment of the current knowledge about PDOC patients should give pause for the BMA to think again about some of its recommendations.
Patients with PDOC (unconsciousness lasting more than 28 days) need expert assessment and treatment and require complex care over many months or years. In general, cases arising from traumatic brain injury (TBI) such as road accidents, assaults or falls have better outcomes than those from non-traumatic causes (non-TBI), primarily intracranial bleeds or strokes. The recent US report however indicates that the overall prognosis may be better than the general impression given to the public by both previous research findings and media reporting of certain cases when they have come to court for rulings in the UK.
In 1994, the AAN defined a vegetative state (VS) as ‘permanent’, if it was still present three months after non-TBI and 12 months after traumatic injury. However, this new research estimates the recovery rate from vegetative states following trauma at 14% between one and three years post-injury. This is so much higher than the 1.6% estimate in 1994 that the report’s authors recommend that the term ‘permanent’ vegetative state should be dropped as it is so misleading. Even with non -traumatic injury, the recovery rate from VS was estimated at 17% within six months and a further 7.5% thereafter.
Though most of those recovering consciousness will remain disabled to varying extents, some will be able to communicate reliably and perform some self -care. Those patients in a minimally conscious state have an even better prognosis than those with VS, yet patients with both conditions will now be permitted to have food and fluids withdrawn in the UK without a court ruling if their relatives and doctors agree this should be done. In this context, it is interesting that the new AAN report notes that though 70% of the deaths in the US in patients with severe TBI resulted from withdrawal of ‘life sustaining therapy’ (i.e. food and fluids in most cases), the actual percentage varied more with the facility they were in than with the prognostic features of the individual patients.
The report concludes ‘that individuals with a DoC at one month post injury may still attain functionally significant recovery after one year post injury, with additional longitudinal studies showing that approximately 20 percent of patients recover to the level where they could return to work or school.’
With 1 in 5 recovery rates to this level, the relatives of those with chronic states of unconsciousness need to be very sure the clinicians have got the diagnosis correct before they agree to have life -sustaining food and fluids withdrawn without a court ruling, especially if the patient is young.
The publication of this new US research and the recent UK Supreme Court ruling both underline in different ways the importance of us all discussing with relatives what we would actually want if we became unconscious long term. Otherwise decisions will be made for us which could pre-empt any chance of our recovery and shorten our lives against our wishes.