Medics seek palliative care only ruling in case of ‘neurologically disabled’ boy
Medics want a High Court judge’s permission to provide only palliative care to a ”profoundly neurologically disabled” two-year-old boy they say grimaces but no longer giggles when tickled.
NHS hospital bosses have asked Mrs Justice Parker to rule that limiting treatment to palliative care would be lawful and in the best interests of the boy – who specialists say suffers from an incurable but unidentified neurological disorder.
The youngster’s parents – who say their son enjoys being cuddled – object. They disagree with the idea of providing only palliative care and implementing an ”end of life plan”. They say all treatment options should continue to be available.
Mrs Justice Parker is overseeing the dispute at a public hearing in the Family Division of the High Court in London.
She has adjourned the hearing until a date to be fixed in May after analysing medical evidence over the past two days.
One of the youngster’s parents is expected to give evidence when the hearing resumes.
The judge has said the youngster cannot be identified and no-one involved in the case named.
A nurse who cares for the boy on Wednesday said she thought that he experienced pain but not enjoyment.
“He grinds his teeth and he grimaces,” the nurse told Mrs Justice Parker.
“(At times) he looks as though he is in pain.”
She added: “Sometimes just the most basic task such as changing a nappy … it looks as though it is very uncomfortable.”
The nurse said the boy did not cry or scream – but body movements suggested pain.
Barrister Debra Powell, who is representing an NHS hospital trust which has asked for a ruling, asked the nurse if she thought that the boy experienced pleasure.
“I would never use the word enjoy,” said the nurse. “The most comfortable he looks is after a bath.”
Miss Powell has told the judge that the boy suffers from a neurological disorder for which there is no cure.
She said he had been under the care of a neurologist since he was a few weeks old and had spent much of his life in hospital.
”His quality of life is very poor,” she said. ‘
‘Further invasive interventions are distressing, burdensome and of little or no therapeutic benefit.”
Miss Powell said the boy’s condition was steadily deteriorating and irreversible – and she described him as ”profoundly neurologically disabled”.
”He has very little if any awareness of his environment,” she told the judge.
”He used to smile and giggle when played with and tickled. He no longer does that.”
Miss Powell said the boy was ”largely unresponsive” – although she said several clinicians had noticed that he appeared more relaxed when cared for by his parents.
A lawyer representing the boy’s parents has urged Mrs Justice Parker to rule against doctors.
”They don’t agree that palliative care should be the only option available to their son or to the implementation of an end of life plan,” said barrister Amanda Meusz.
”They wish for all options and treatments to remain available to him.”
She added: ”The parents take issue with the description of their son’s quality of life as described by the clinicians.
“They visit him on a daily basis and are clear that he responds to their presence.
“He enjoys being held and cuddled and bathed and massaged. He responds to and enjoys music.”
The boy’s mother had told the judge in a written statement: ”My son does respond to stimulation through touch and greatly enjoys being held and cuddled.”
She added: ”He responds to my presence and enjoys my company.”
The boy is being represented by staff from the Children and Family Court Advisory and Support Service (Cafcass) – an organisation established by MPs to safeguard the welfare of children involved in litigation.
Mrs Justice Parker will analyse submissions from lawyer Penny Logan about what Cafcass thinks is in the boy’s best interests before making decisions.
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