High Court judge rules treatment should be withdrawn for dying Royal Borough teenager

A High Court judge has ruled in favour of an NHS recommendation to no longer give ‘distressing’ treatments to an extremely ill 15-year-old girl from the Royal Borough – saying it is not in her 'best interests'.

The teenager, referred to as J, has an incurable progressive neurological disorder which affects only one in a million people. She suffers painful muscle spasms, which have been getting worse.

J is a patient at Evelina London Children’s Hospital (ELCH).

The trust that runs it – Guy’s and St Thomas’ Trust – claims it is not in J’s best interest to receive treatments that have become ‘painful and burdensome’ to her.

In March, doctors agreed they should move to a palliative care plan focused instead on keeping her comfortable as she approaches the end of her life.

Some members of J’s family pushed back against the decision, which went to the High Court and was decided last month.

The condition

As part of her underlying condition, J suffers from dystonia, a movement disorder that causes the muscles to contract. She has experienced worsening of pain and discomfort over time.

Her condition has deteriorated and there is no prospect of improvement in the future, her doctors said.

J is dependent on others for all aspects of her daily care. She is heavily sedated and may be awake for as little as one to two hours in a 24-hour period.

She lost basic motor skills, some of her ability to communicate and has spent much time bed-bound.

Nonetheless, the judgment said she was ‘able to smile and giggle’ - and her positivity and ‘conspicuous courage’ made her a ‘very popular’ patient and ‘inspirational’ to all those around her.

However, J started to show signs of low mood as a result of her deteriorating condition.

She also displayed more serious involuntary movements of the tongue and upper airway, blocking her breathing.

Her consultant said these episodes of airway obstruction occur up to 25 times a day.

The treatment

Procedures called chin lifting and jaw thrusting are required to relieve airway obstruction. These have to be performed continuously for up to 30 minutes.

Jaw thrusting involves medical staff pulling the jaw upwards to separate the tongue from the back of the throat.

Nursing staff and doctors said these were ‘terrifying’ for J.

J’s mother said her daughter had a ‘help me’ expression on her face when this happened, accompanied by a clear ‘panicking’ reaction.

Presiding judge Mr Justice Hayden wrote in his decision that J’s reactions ‘disturbed’ nurses and carers.

“There has been a growing feeling that this ‘cannot be right’,” Justice Hayden wrote.

The clinical team believed they had reached the point where continuing to perform these manoeuvres was simply prolonging J’s suffering.

Their recommendation was that the focus needed to shift to keeping J comfortable. The girl's father was 'unambiguously supportive' of this care plan, wrote Mr Justice Hayden.

The judgment

Mr Justice Hayden said he had been told that discontinuation of chin lifting and jaw thrusting will probably lead to ‘an episode of critical airway compromise’ resulting in J’s death.

Nonetheless, if these manoeuvres are contrary to J’s best interests, they cannot not be allowed to continue ‘a day longer than was necessary,’ wrote the judge.

It is difficult to ascertain what J wants, since she is non-verbal. However, the judge felt she had been making her feelings known with her reactions of ‘panic, alarm and terror’.

A pictogram exercise was used to allow J to rank various procedures from ‘strongly liked’ to ‘strongly disliked’, and ‘jaw thrusts’ was ranked by J as ‘ok’.

But the judge thought this said more about her character than anything else and ‘does not bear the weight [the family’s legal representative] seeks to place on it.’

It cannot be taken as a sign that J would choose to live with her progressive neurodegenerative disorder, its ‘terrifying’ airway blockages and ‘traumatic’ medical interventions, he said.

"I have come to the clear conclusion that to provide the contemplated treatment to J is incompatible with her best interests," wrote Mr Justice Hayden.

“I am entirely aware of how disappointed and sad [J’s mother and cousin] will be by my conclusions.

“[They have] played an invaluable part, with all the clinicians, in maintaining J’s dignity in the face of some terrible challenges.

“That said, I am clear that the time has come when the treatments … do not respect J’s inviolable right to be valued, respected, and treated ethically.

"In other words, they would not afford her the dignity that she and her family, including her extended family, at the hospital, have guarded so vigorously thus far."