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should 'Charlie's Law' be introduced

11 July 2018

The parents of Charlie Gard, an infant who died in 2017 from a rare genetic illness, are pressing for the introducing of 'Charlie's Law' to save other parents from the trauma of going to court over their child's treatment. Rebecca Fitzpatrick, partner and specialist in health law at Browne Jacobson, discusses its legal implications.

Charlie Gard died a week before his first birthday after a long and very bitter public fight with the hospital over his treatment. What is your experience of these traumatic cases?

Over 25 years in practice, I have seen these cases from all sides. In the first 11 years of my career I represented patients, parents and families but, for the last 14 years, I have represented NHS providers - trusts, private hospitals and clinical commissioning groups. I also sit part time as a first­ tier judge in the mental health tribunal. My cases have included representing an Orthodox Jewish family in relation to a dispute about what medical treatment should be offered to their dying baby and seeing first-hand what an impossible situation it was and how tortuous it was for them. But more recently, I have seen how these cases also deeply affect the clinical teams looking after such sick children.

Would mediation help in these traumatic cases?

Hospital trusts do usually offer the option of mediation and, generally, they pay towards it, but the issue is how soon it is offered.

I think it would be really sensible to have a more formal arrangement, so it is offered early on, with funding for families so they can seek advice in preparing for mediation. Trying to get each party to really listen to the other and agree a way through can be very effective. Even if the case still goes to court, it can really help to narrow the issues, as Mr Justice Francis says.

However, cases involving babies in a palliative care situation, where the parents don't agree with the doctors' treatment plan, are among the most difficult, and therefore in my experience a significant minority are still likely to require court intervention to reach a resolution.

Mr Justice Francis also said in his judgment that he did not believe Parliament intended to stop parents in such profound cases as these from receiving legal aid. Should it be re­ instated?

Yes. My personal view is that it is appalling that there is no legal aid for families in these cases­ what could be more important than your child's life? It is so traumatic for parents, who end up fighting in court when all they want is to be at their child's bedside. It can also lead to vulnerable families being advised by people who aren't necessarily appropriately qualified in what is a complex area of law  -a point raised by the judge in the Alfie Evans case.

The second proposal is to change the decision-making process so parents should be able to make decisions as to what medical treatment is in their child's best interests, unless this would be likely to cause the child significant harm. What would be the consequences of this?

At the moment, the legal test is what is in the best interests of the child. If there is a dispute between the family and the medical team over what is in the child's best interest and the case goes to court, the child's legal rights are considered independently from the rights of their parents - the child has their own legal personality. The court will look at the 'best interests' test objectively - the parents' views will carry a lot of weight but they won't necessarily be determinative.

Charlie Gard's parents are asking for the law to be changed so that parents can make decisions relating to their child's medical treatment as long as it won't cause 'significant harm' to the child. That is a very fundamental change. The existing legal framework is set out in a range of legislation and case law such as the Children Act 1989 and the leading case of Portsmouth NHS Trust v Wyatt 2005] EWHC 2293 (Fam). The latter case set out the principle that the 'best interests' test encompasses medical, emotional and all other welfare issues in relation to the child. Also, that there is a strong presumption in favour of preserving life, but not where treatment would be futile, and there is no obligation on the medical profession to give treatment that would be futile.

Introducing a subjective test about what amounts to 'significant harm' would be a fundamental departure from the current position and I would be concerned about that because you have to look at it in the wider context and potential impact on vulnerable children.

In both the Charlie Gard and the subsequent Alfie Evans cases, the judges set out in their judgments their view that the treatment plans being proposed by the families would cause harm, distress and suffering to the child. But would that meet the threshold of 'significant harm'? Would such a test lead to judges authorising treatment that would cause a child distress and would that be in breach of the child's human rights?

Sometimes, with the best will in the world, families might not be making the right decisions.

'Significant' harm is a high threshold and a grey area.

Would Charlie's Law have legal implications on other cases, for instance those involving incapacitated adults?

Yes, there would be potential for this to impact on young adults aged 16 and 17, who are currently covered by the Mental Capacity Act 2005 if they lack capacity to make the treatment decision in question. As always, it would depend on the case. I acted for the hospital trust in the case of Aintree Hospitals NHS Foundation v James [2013] UKSC 6, [2013] All ER (0) 339 (Oct), which went to the Supreme Court in 2013. Mr James had been told earlier on in his life that he wouldn't survive when he had cancer but, against all the odds, he did. When, years later, he lost capacity and his family was told that he was dying and that clinical recommendation was not to offer certain treatment in the event of a further deterioration because it would be futile, his family couldn't accept that advice.

In that case, there were attempts at informal mediation which failed because the family had such strong views. However, I am certain that formal mediation could help to resolve a significant number of cases involving disputes about the medical treatment decisions for incapacitated adults.

However, it must be remembered that clinicians cannot be forced to provide treatment that they don't consider appropriate, even if other clinicians may not agree with them. That principle was confirmed in the well-known Court of Appeal judgment Airedale NHS Trust v Bland [1993] 1 All ER 821.

Therefore, even if Charlie's law was introduced, parents, families or patients would not be able to dictate what treatment is clinically appropriate and should be offered, or force clinicians to provide a treatment of their choosing where the clinician considered that to be inappropriate.

What would be the effect of the proposals have on the medics, families and trusts involved?

Mediation can help the two sides maintain a good relationship, which is essential in these difficult cases - while the court hearings are going on, the child is still being treated by that hospital, and day­-to-day decisions are being made which require co-operation between the parents and the clinical team in the child's best interests.

However, I think changing the law to give parents' views greater weight would be likely to make clinicians feel uncomfortable, and in some cases could make disputes more intractable. (For example, where there is no other clinical team available that is willing to offer the treatment proposed - as was the situation in the James case.) I also think it would be unlikely to have the support of Parliament or the courts, whose approach in these cases was reviewed by the European Court in Gard and others v UK [2017] ECHR 39793/17, [2017] All ER (D) 165 (Jun), and was endorsed.

Are there any other legal changes you would like to see?

One of the big issues in both the Charlie Gard and Alfie Evans cases was the impact of social media. These cases were extremely high profile with international reach and the likes of the Pope and President Trump tweeting their views. Alongside the many appropriate discussions to ventilate the ethical and legal issues involved, however, the large amount of abuse and extent of social media comments caused huge distress to the doctors, hospital staff and other patients.

My personal view is that it would be better for these very contentious cases to be heard in private, at least initially, so the child and the trust/care provider are not named until the case is concluded. The cases would still receive a lot of coverage and the issues would be ventilated in the public arena, but there wouldn't be this social media maelstrom around everyone involved in the case causing havoc and distress.

It is not unusual for anonymity orders to be given in cases involving serious medical treatment disputes about adults who lack capacity. Such orders will usually only be given where the information is not already in the public domain. In my experience, such orders do allow the parties some private space to focus on the best interests of the patient and try to resolve the dispute as quickly as possible.

However, in my experience the judiciary are not keen on that approach, even though the judgments in the Alfie Evans case for example expressed "dismay and concern ... that some members of the hospital staff could not get to the hospital because of road blockages' and 'that staff, patients and family members were upset and frightened by what was taking place".

It has to be a balancing exercise. It is critical that the public are allowed to know what is going on and that these important issues are ventilated, but it is also important that sick children are cared for in a place of 'peace and calm', as expressed by the Court of Appeal judgement in the Alfie Evans case.

Where hearings are held in private, it can in my experience take the heat out of an already very difficult situation. The press can make submissions before the court makes an order and judges are very robust in holding hearings in open court unless there is evidence that it is not in the best interests of the child or adult patient.

However, in these high-profile cases, the problem that is our legal system hasn't yet caught up with social media and how to control it. Where no anonymity order is given, it is very important to make sure there is a balanced picture of the case in the public domain, and therefore it will be necessary for care providers to engage with the press, while also ensuring their patient's right to confidentiality is not breached.

Interviewed by Grania Langdon-Down


This article was originally published on LexisPSL on 10/07/2018

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