Individual
cases of huge emotional impact are not something on which I generally feel
qualified to comment, and seldom are a good basis for general policy. But the
heartbreaking case of little Alfie Evans is so striking I wished to look at it.
The most valuable and complete of many court
judgements of the case seems to be the High Court judgement of 20 February, the starting point
for the many appeals since. Reading this very carefully, I feel quite certain
that the state is taking too much power over individuals in denying the Evans’
family the right to take their son abroad for treatment.
It is worth saying at the start that everybody
involved, including the judge, seems genuinely motivated to do the best for
little Alfie. It is also fairly plain that there seems no reason to believe
that there is ever any chance of recovery.
The discussions of whether the
little boy’s reactions to stimuli including the touch of his mother, are actual
reactions or coincidental convulsions, is terribly, terribly sad.
But I do worry about the reasoning employed.
All the medical evidence indicates it is unlikely that Alfie can experience
pain or discomfort:
para 21 Prof Haas: a. the majority of Alfie’s reaction to
external stimuli (i.e. touching, pain stimulation like pinching, etc., reaction
to noise, parents voice etc.) is very likely not a purposeful reaction but very
likely caused by seizures (as proven by repeat EEC monitoring)
para 25 Dr M: I believe that is it unlikely that Alfie
feels pain or has sensation of discomfort but I cannot be completely certain of
this since Alfie has no way of communicating if he is in pain or discomfort.
para 28 The thalami, which I have been told fire the
pathways within the white matter which generate sensory perception is, Dr R
points out, effectively invisible in the scan. In simple terms the thalami,
basal ganglia, the vast majority of the white matter of the brain and a
significant degree of the cortex have been wiped out by this remorseless
degenerative condition.
29. Painful though it is for F to read Dr R’s observations of Alfie’s current condition, it is necessary for me to set them out:
“Alfie does not show any response other than seizures to tactile, visual or auditory stimulation. He does not show any spontaneous movements. His motor responses are either of an epileptic nature or are spinal reflexes. He is deeply comatose and for all intents and purposes therefore unaware of his surroundings. Although fluctuating, his pupillary responses are abnormal with now only the most subtle, very brief dilatation to exposure to light but no normal constriction. Exposure to loud noises does not elicit any response. There is no response to central painful stimuli other than the occasional seizure. There is no response to painful peripheral stimuli other than seizures or at times spinal reflexes with extension and internal rotation of his arms and less frequently now, of flexion of his legs.”
29. Painful though it is for F to read Dr R’s observations of Alfie’s current condition, it is necessary for me to set them out:
“Alfie does not show any response other than seizures to tactile, visual or auditory stimulation. He does not show any spontaneous movements. His motor responses are either of an epileptic nature or are spinal reflexes. He is deeply comatose and for all intents and purposes therefore unaware of his surroundings. Although fluctuating, his pupillary responses are abnormal with now only the most subtle, very brief dilatation to exposure to light but no normal constriction. Exposure to loud noises does not elicit any response. There is no response to central painful stimuli other than the occasional seizure. There is no response to painful peripheral stimuli other than seizures or at times spinal reflexes with extension and internal rotation of his arms and less frequently now, of flexion of his legs.”
The judge concludes that, as Alfie is in a
semi-vegetative state with a degenerative condition and probably cannot
experience any benefit from life such as the touch of his mother, support
should be withdrawn and he should be allowed to die with proper palliative
care.
But here is the place where I radically
disagree: though it is unlikely that Alfie can feel pain or discomfort, the
possibility that he MIGHT be able to experience pain and discomfort is the
reason the offer from the Vatican to ship him by air ambulance to a hospital
there cannot be permitted.
60. Whilst I have, for the reasons stated, rejected the
evidence of Dr Hubner, I do not exclude the possibility that travel by Air
Ambulance may remain a theoretical option. It requires to be considered however
in the context of the matters above and one further important consideration.
All agree that it is unsafe to discount the possibility that Alfie continues to
experience pain, particularly surrounding his convulsions. The evidence points
to this being unlikely but certainly, it cannot be excluded.
The judge concludes that the risks of pain in
travel by air ambulance, from the “burdensome” air travel and the difficulty of
maintaining his care regimen on the air ambulance, rule out his going to Italy.
I have a fundamental problem with this.
Throughout the medical reports, the possibility of Alfie experiencing pain and
discomfort is not represented as a more significant possibility than that he
can experience joy from the touch of his mother – both are viewed as highly
unlikely.
The argument that he cannot receive further treatment in the UK
because he is vegetative, yet cannot travel for it in case he is not, appears
to me pernicious. That is without the lesser point that the
capabilities of air ambulances are perhaps here underestimated.
There is also one area where I think Justice
Hayden is deplorable. Professor Haas, who is German, concluded his evidence
with this powerful paragraph:
“Because of our history in Germany, we’ve learned that
there are some things you just don’t do with severely handicapped children. A
society must be prepared to look after these severely handicapped children and
not decide that life support has to be withdrawn against the will of the
parents if there is uncertainty of the feelings of the child, as in this case.”
Justice Hayden takes extreme exception to
Professor Haas’ statement, which he refutes at length, concluding:
53. I regard the above as a comprehensive answer to the
tendentious views expressed by Professor Haas. No further comment is required
by me.
This is completely out of order from Hayden.
He is entitled to disagree with Professor Haas, but he is not entitled to
describe the good Professor’s honest and reasonable view as “tendentious”.
This case is overreach by the state. It is not
a case of the parents demanding perpetual NHS support, it is a case of the
parents wishing, at no cost to the state, to leave the country with their
severely ill son.
As the state’s view is that their son will very shortly die
anyway, and it is unlikely it will occasion Alfie any significant discomfort he
can feel, I can see no reason that the state should override the wishes of the
parents to pursue their hope, however remote, that some span of life of some
quality might yet be available to their son.
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