Today as I sit at my desk at lunch time I read the sad news that a little boy aged just 14 months, who was the centre of a court case, has died. The young child was born with downs syndrome and mitochondrial myopathy, a progressive muscular disorder to which there is currently no cure. The young boy, referred to as R, required constant ventilation and had been in hospital since birth. R’s parents wanted him to be allowed to go home with a long term care package; however R’s doctors did not believe this would be in his best interest and in fact believed that it would prove too burdensome for him.
The NHS Trust applied to the court for a declaration that would allow them to withdraw the artificial ventilation and allow the child to die in comfort. The clinicians caring for the child produced expert evidence that showed that the medical procedures the child had to endure caused undue suffering. They believed on balance, the suffering far outweighed the benefit the child received: the benefit of life. Whilst the benefit of life was given great weight and extensively considered, it was noted by The Honourable Mr Justice Jackson that ‘It is impossible to be certain about what he is feeling, and he cannot communicate or react to sensations himself, such as by scratching an itch. His existence is already one of total dependence, and his condition will inexorably deteriorate. In Dr A’s opinion, he should be allowed to die in peace with his family.’
The parents appointed their own medical expert who stated that he knew of a number of profoundly disabled children living at home with their parents that required constant artificial ventilation. However, the medical expert also conceded that he did not know of any child living at home with their parents that was as disabled as R, or who had such a progressively degenerative disease.
There was no question that R’s parents would provide him with the care he needed to an excellent standard, the main question was how much suffering would be incurred by the child by allowing him to go home on long term ventilation. The Judgement concluded that ‘Having considered all these matters, I find that the treating doctors and the Children’s Guardian are right in saying that it is in R’s best interests for ventilation to be withdrawn. Continued long‐term ventilation would be futile and would progressively cause him more and more suffering, while giving him very little in terms of any positive experience of the life that was being preserved by such intrusive medical intervention.’ Further, Mr Justice Jackson stated that he regretted ‘the pain that this decision must cause, but hoped that on further reflection the family will feel able to make arrangements with the doctors that will allow them to find peace for R, and some peace for themselves.’
Following this judgement and prior to final order R’s parents were given permission to submit further medical evidence in support of their argument, however, sadly, before a hearing could take place R died.
The full judgement can be found here: http://www.judiciary.gov.uk/Resources/JCO/Documents/Judgments/an-nhs-foundation-trust-v-r-child-and-others.pdf
Marilyn Stowe has also written a blog post on the subject. The post can be read here: http://www.marilynstowe.co.uk/2013/12/18/court-ponders-plight-of-severely-disabled-child/
Photo by stopherjones via Flickr under a Creative Commons license