Charlie Gard, Alfie Evans and R (A Child): Why A Medical Treatment Significant Harm Test Would Hinder Not Help

This is an article which was originally written for The Transparency Project as a guest post by Katie Gollop QC and Sarah Pope. Katie represented Great Ormond Street hospital in the Charlie Gard case, Sarah and Katie appeared in the recent case of Re R (A Child) [2018] EWFC 28.

Shortly after the death of Alfie Evans, Charlie Gard’s parents announced their forthcoming June 2018 campaign (through the Charlie Gard Foundation) for Charlie’s Law. Charlie’s Law would make provision for non-means tested legal aid and mediation, but the heart of it appears to be a push to change the Children Act 1989. The change sought is, it seems, a statutory requirement that a hospital seeking a declaration or order about a child’s medical treatment proves the significant harm threshold that a Local Authority has to prove before it can take a child into care.

The Supreme Court was asked to consider this in Gard, and then again in Evans. It said no. At the second time of asking – and when refusing permission to Alfie Evans’ parents to appeal – the President of the Supreme Court described the current best interests test as the “gold standard”.

So the primary legislation needed to introduce a threshold or give more weight to what parents want seems a remote prospect. That doesn’t mean that the problems that reared their heads in Gard and Evans are going to go away. As Charlie’s and Alfie’s Armies demonstrated, there is a view that when “the State” – doctors backed by judges – prevents loving parents from giving their desperately ill children a chance at life at no cost to the NHS, matters have gone too far and power needs to be redirected to parents. Charlie’s parents predict that if there is no change, then these cases will continue to happen.

The purpose of this post is threefold:

  1. First, to look at a very recent decision, R (A Child) which involved a sort of “reverse Charlie Gard” and which shows how the s.31 Children Act 1989 significant harm test can play out for a parent caught up in a medical treatment dispute where the Local Authority is already involved.
  2. Next, briefly to consider court applications concerning a child’s medical treatment from the hospital’s point of view.
  3. Finally, to explain why, in our view, a significant harm threshold for medical treatment applications brought by hospitals would cause new problems and not solve those perceived to exist.

 

R (A Child) [2018] EWFC 28 Baker J

R, aged 11, was born with the most profound disabilities caused by a Rett-like syndrome. Amongst other problems, she had very little communication except by eye, head movement and rare smiles and she was tube fed. R’s parents were separated but on good terms and R lived with her mother. R’s mother was devoted to her and a powerful advocate on her behalf. She also had three other children to look after (one much younger than R) and she herself had had a troubled upbringing.

The Local Authority and R’s paediatrician had concerns about the care provided to R at home and care proceedings were started in 2015. They ended with the Local Authority withdrawing its application. The paediatrician continued to have concerns about missed appointments, R’s weight loss and general maternal refusal to follow medical advice.

In May 2017, R was admitted to hospital with increased dystonia. One night, she suffered a life-threatening event: she had seizures and breathing difficulties, her oxygen saturations fell and the hospital prescribed a large amount of medication after which R required intubation and ventilation. R was then transferred to PICU in Cardiff where it was possible to extubate her. She was discharged home to her mother’s care on 31 May. Throughout this ordeal, R’s mother consented to all treatment recommended for R.

Back at home, R’s mother completed a wishes document with R’s paediatrician. The thrust of it was that R should not be actively resuscitated if she had another life threatening event.

R then went to a residential home called DHR for respite care. The wishes document was discussed at a Child in Need review. Doctors and the Local Authority considered that since R had recovered, the wishes document was no longer ethical or in R’s best interests. R’s mother was not prepared to change it. She voiced her view that prolonging R’s life in the event of another life-threatening episode would cause her further suffering.

On 23 June, R’s mother visited her in DHR and was concerned at R’s condition. She administered a dose of midazolam which she carried in her bag for emergencies. DHR’s clear suggestion that R’s mother had given her a dangerous drug unnecessarily in a way that endangered R’s safety, later became a central plank of the Local Authority’s case against the mother.

R was re-admitted to hospital and over the weeks that followed, the paediatrician and R’s mother had long and frank discussions about R’s quality of life and whether artificial nutrition and hydration should be continued. Not all of the doctors at the hospital considered that withdrawal was appropriate but they did not have an ethics committee at the hospital or in the region who could advise and assist. Accordingly, and at R’s mother’s request, the paediatrician referred R to Great Ormond Street for ethical advice.

GOSH said that R was not at the end of her life so that withdrawal of nutrition and hydration was not something they would consider. GOSH declined to provide any other ethical advice and sent R back to the hospital from which she had come.

This brief, unsatisfactory admission to GOSH occurred in the immediate aftermath of the Charlie Gard case. R’s mother, feeling that she was getting nowhere and still traumatised by the life threatening event in May, gave interviews to the BBC and stated on social media that she thought R was suffering and ought to be allowed to die.

R was at home for some weeks before being re-admitted to hospital with evidence of infection. R’s mother felt unable to consent to antibiotics. The hospital phoned the Local Authority for advice. The Local Authority issued proceedings under s 31 of the Children Act 1989 and obtained an interim care order during an urgent telephone hearing. The final hearing did not take place until six months later during which time, R’s placement at DHR became established.

At the outset of the final hearing, the care plan urged upon the Court by the Local Authority was for R to remain at DHR indefinitely and for her mother’s contact with her to be reduced to once a month. The thinking was that since R was unlikely ever to go home, more than monthly contact was unnecessary.

The outcome of the final hearing was very considerably more favourable to R’s mother and R. A final care order was made such that R remained at DHR. But, crucially, the background to that order – written into the care plan – was that the Local Authority agreed to fund attunement work and psychotherapy for R’s mother and reunification remained a realistic objective within 2 years of commencement of that work. In the meantime, contact was much more generous and geared towards facilitation of a return home in due course.

Two post-scripts.  In cross examination at the final hearing, the clinical records and oral evidence of the DHR witness about the midazolam incident were exposed as being so inconsistent and unsatisfactory that the allegation could not be pursued. Finally, the Judge stated that it was not appropriate that the social worker in her evidence, and in connection with R’s mother’s care of R, referred to R’s Article 3 right to enjoy “prohibition from torture”.

Reflections

When R’s mother did not consent to antibiotics, the Local Authority had choices. It could take the view that this was a temporary, specific medical treatment issue and advise the hospital to consult its own lawyers. Or, given the background, it could act as it did and regard the mother’s inability to give consent to antibiotics as a child protection issue.

Having made its election and gone down the care proceedings route, the Local Authority used every occasion on which R’s mother had not accepted medical advice to build its case on significant harm. Each occasion on which she had differed with doctors, her refusal to alter the wishes document, the midazolam incident, her public statements (the ethical advice she asked for not having been provided) that R was suffering and ought to have treatment withdrawn – these were all invoked against her.

If a significant harm test were introduced into children’s medical treatment decisions, that could be dangerous for parents. If there are already concerns about whether the child’s parenting is good enough, then any failure to accept medical advice will slot in to the existing significant harm case building exercise. If there are not already concerns, there might well be afterwards since a court determination that parental decision making had caused significant harm would put that child on the Local Authority’s radar. It would, presumably, be something that a hospital would be bound to report to the Local Authority as a safeguarding issue.

In short, it is not difficult to see how a significant harm test for decisions about children’s medical treatment could have a chilling effect. Responsible, loving parents might well be deterred fromholding out for what they believed to be in their child’s best interests if they feared that in doing so, they risked having their child taken into care.

Re R shows why there are good reasons for having two different and separate tests. A best interests test for a specific, medical issue in the child’s life that requires targeted intervention. And, separately, a different test for parenting that harms the child or puts her at risk of harm such that, for the child’s protection, she may need to be removed from her parents. If the concept of significant harm is imported into specific medical treatment decisions, parents who dare to disagree with doctors stand to lose not just their control over a single medical decision in their child’s life but their child.  And there may be implications for any other children of the family.

Why Do Children’s Hospitals and Paediatric Units Go To Court?

In a strongly disputed case, a hospital doesn’t make an application to court because it knows what is best for the child and simply needs the Court’s agreement to make things lawful.

A hospital applies to the Court because it doesn’t know where the child’s best interests lie.

Of course it has a view, but even as the hospital makes its application, it knows that there is another, powerful and deeply held contrary view, that is born of parental love outside its experience. A responsible hospital knows that the parents may be right.

Of all the staff working in a paediatric intensive care unit, it is the nurses who know their patients best and, in a Gard/Evans situation, amongst staff it is the nurses who suffer most. Bed spaces in PICU are small and intimate and a nurse must stand over the child day and night. Nurses aren’t lawyers and they don’t sit about at work earnestly debating how best to proceed when their patient’s Article 2 right to life is in tension with his concurrent but competing Article 3 right not to suffer degrading treatment. What nurses do feel, like doctors, is an innate and powerful drive to first, do no harm. A nurse required to provide life sustaining care to a child when experience tells her that care is harming not helping the patient, whilst simultaneously sharing the PICU bed space with exhausted, angry, desperate parents who know that the nurse is conflicted and believe that she is “not on their side”, is under enormous psychological pressure. This situation gives rise to high levels of sickness among nursing staff and it is exacerbated where the social media response is out of control because the pressure doesn’t end when the shift ends.

We do not want there to be any misunderstanding: nothing that any member of the hospital’s staff feels touches the grief and suffering of parents. Our reason for identifying the burden on nurses in particular, is to explain a significant part of a hospital’s purpose in seeking a court declaration of a child’s best interests. That is to obtain reasons. The role of a judge is not only to decide a treatment dispute but also to explain why the parents’ view or that of the hospital best fits with what is right for the child. If the court declares that it is in the child’s best interests for life-sustaining treatment to continue when the hospital had thought otherwise, it will explain why. If you are a regulated healthcare professional, knowing that what you are doing is lawful is, self-evidently, important. Just as important, when parents and clinicians can’t agree, is the reassurance that what you are doing is in your patient’s best interests.

Other Problems Caused by a Significant Harm Test for Medical Treatment Decisions

If we had a medical treatment significant harm threshold, there would probably be a test case which decided that even if it was certain that the child felt no pain, the prolongation by futile treatment of a life of no benefit constituted a significant harm to the child and the child’s dignity. (In our view, in depth consideration of what human dignity means where the human in question has no awareness and no pain, and when and how that dignity should be protected, is much needed. That difficult topic is not our focus here).

At the same time, most would argue that the child suffers significant harm if life sustaining treatment is withdrawn because his life comes to an end.

And all would acknowledge that the parents suffer a significant harm if treatment is withdrawn at a time when they are far from reconciled to that and desperately want their child to go on living.

Perhaps the phrase “the best interests of the child” is itself injurious. Perhaps lawyers and judges should consider whether parents might feel less bitter and disregarded if we spoke of identifying a path of least harm to the child or, put the other way, a “greatest harm” test. Perhaps no linguistic usage or avoidance helps, when the person who is yours to care for is taken away from you against your will.

In the end though, where doctors and parents are unable to agree about a child’s medical treatment, the task of balancing competing rights cannot be avoided: changing the language doesn’t change that.

The addition of a significant harm threshold would, we suggest, create the following unnecessary problems:

  • It would require the hospital to pivot away from its sole core purpose – the care of its patients – towards child protection.
  • It would stigmatise the parents. It’s bad enough to have a court finding that what you wanted for your child was not in your child’s best interests. It’s worse to have a court finding that you have caused your child significant harm.
  • It would turn an inquisitorial process, where everyone assists the court in its task of identifying where the child’s best interests lie, into an adversarial one.
  • It would force doctors and nurses and everyone at the hospital including the lawyers who, currently, try hard to facilitate consensus building, to work against parents. At some point, the hospital would have to start building a case against the parents and trying to win it. Positions would harden unnecessarily and dialogue would be more difficult. Mediation would have less, not more, chance of success.

In disputes as long running and polarised as those in Gard and Evans, the atmosphere can become strained to breaking point. But everyone in the hospital is still always, and at all times of the day and night, striving to listen to, empathise with and be there for everyone in the family. It’s hard to see how the concept of significant harm might help with that.

Practice Areas: 
Family
Court of Protection