Surgery for scoliosis when P indicates he doesn’t want it

By Celia Kitzinger, 8th August 2022

A 19-year-old man has severe scoliosis.  The Great Ormond Street Hospital for Children NHS Foundation Trust seeks a declaration that it is lawful and in his best interests to undergo spinal surgery (with any deprivation of liberty that may entail).

This is not a contested application.  The young man (P) is represented by his litigation friend, who is his shared lives carer.  

There is no disagreement that he lacks capacity to make his own medical treatment decisions (he has autism and microcephaly) and there is unanimity that surgery is in his best interests.

The Trust (represented by Kyle Squire of 5 Pump Court) is making the application because P “has significant anxieties around clinical intervention, especially in a hospital setting, and has expressed the view that he does not want surgery”.  When surgery and other hospital procedures have been mentioned, he’s been observed to “visibly tremble … shaken his head in disagreement, reached out for physical comfort or appeared to want to cry”.  When asked directly if he wants to go ahead with the surgery, he made a thumbs down motion to indicate not.

The Trust is bringing the application to ensure his rights are protected and that there is scrutiny of the care plans.  “The Trust considers that to ensure the protection of [P’s] rights as an incapacitous adult subject to serious invasive medical treatment with risks[1], against his expressed wishes, it is necessary for the court to approve the treatment rather than the Trust making a best interests decision”.

The Trust’s psychological team and learning disability team have worked hard over several months to make the experience of surgery as least distressing as possible for him.  They’ve familiarised him with the hospital setting (including the theatre and clinical areas), he’s met the clinical spinal nurse specialist (who will have no other duties on the day except to be available for him), they’ve given him the best opportunities they could devise to understand why he needs the surgery (e.g. via social story work and pictorial representation) and through psychological therapy they’ve worked out where some of his anxieties stem from and the steps that can be taken to alleviate them.  One trigger for his distress is the word “surgery” (which will be avoided).  Another is the sight of blood.  He’s also anxious about white beds – so his bed will be blue (a colour he’s said he likes).  His shared lives carer, Mr A,  will have accommodation in hospital with him for the duration of the admission.

The case (COP 13955023) was heard before Mrs Justice Arbuthnot sitting remotely in the Royal Courts of Justice as a Court of Protection judge on 6th July 2022.

She asked what would happen if the curvature of his spine wasn’t treated: “what are the problems that might arise if nothing is done?”.  

While waiting for the doctor to join the hearing so that this question could be answered (he wasn’t available until midday), the judge heard from Mr A, P’s shared lives carer, who said he was “very much in favour of this operation”.  This is because P “is so restricted at the moment in what he can do. He’s a very active young person and I believe this operation will help him get back to his normal activities”.  Those included moving around freely, lifting things, and even his personal care.  Mr A and his wife have been looking after P for “nearly three years now” and the judge told him: “Your care has been described as exceptional, so thank you very much for everything you’ve been doing”.

There was then a 45-minute break until the doctor – a consultant orthopaedic surgeon – was able to join the hearing.  

Giving evidence, the doctor said that the scoliosis was “severe,” such that “any surgeon around the world would not hesitate to offer surgery for it.  Not operating would mean the curve would worsen and he’d be in significant pain… It would compromise his balance and stability and prevent him from walking longer distances.  The worsening curve would likely affect his lung function…. The principal goal of surgery is to stop the progression and to achieve as much correction as possible”. 

Counsel for the Trust (Kyle Squire) asked: “So there’s a likelihood of exacerbation of deformity and pain if there’s no surgery?”.  “It’s inevitable,” replied the doctor.

Mr A was offered the opportunity to ask questions of the doctor (technically this would have been a cross-examination, I believe) but declined saying he’d met the doctor several times and “discussed everything” at previous meetings. 

The judge asked whether P’s condition was worsening and the doctor explained that it was – by about one or two degrees every year “and over 10 or 15 years, that can be significant… There is a window of opportunity that’s been open for some time and is threatening to close now: it’s now or never in terms of stabilising his spine”. 

It seems in fact that there has been “a regrettable delay” in making this surgery available to P since his referral.  This was in part because the pandemic meant that elective surgeries were suspended for some time and the waiting list became much longer.  In part, though,  it was also “purposive”, to allow for therapeutic work with P to reduce his anxieties around the surgery.

The judge approved what she described as “the very carefully thought-out care plan”, and the surgery was planned to take place in  12 days’ time.

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @kitzingercelia

[1] The risks of surgery were not discussed in court but had obviously been included in the bundle. They are risk of spinal cord injury which could range from temporary mild loss of sensation to paralysis, wound infection, post-operative problems and psychological harm.

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