The Best Interests of the Child and Right to Life – A Mediator’s View

Background

2022 again saw a prolonged court dispute between a family and a Hospital trust over the treatment of a critically ill child felt by doctors to have no conceivable prospect of recovery.

The family would not accept this view and opposed the making of a “best interests” finding which would have led to the end of the child’s life.  The case involving Archie Battersbee is particularly painful as this was not an instance of a very young child afflicted by a mysterious disease.

Archie was a lively and active 13-year-old, whose irreversible condition developed from hypoxia caused by a ligature which he put around his neck at home.  Why he did this is unknown, but it is hard to imagine a more appalling scenario for his mother who cut him down, and for his father and brother.  A whole range of painful emotions will have arisen, including grief, fury, guilt, and a sense of helplessness.

At the same time, doctors and nurses involved will have felt deep frustration and disappointment that they could see no way to cure or improve Archie’s condition.

Media Attention

Such cases inevitably generate substantial public interest.   As Haroon Siddique pointed out in an article in The Guardian:

Having a child suffer an injury that leaves them attached to a machine and a shadow of the lively child they were previously is every parent’s worst nightmare. As a result, cases such as Charlie Gard, Alfie Evans, Isaiah Haastrup, Tafida Raqeeb and Alta Fixler have struck a chord with the public.  Tafida’s was the only one with a seemingly happy ending. A judge disagreed with doctors at the Royal London Hospital and allowed the brain-damaged girl   – unlike Archie she was not deemed to be brain-stem dead – to travel to Italy for treatment, where she recovered sufficiently to be removed from intensive care.

The intensive Battersbee litigation took an unfortunate early turn because clinicians could not test for brain stem death, despite such a test being ordered by the court[1].

The judge then made a declaration of death despite non-compliance with the established very demanding brain stem death criteria[2].  Her declaration was overturned by the Court of Appeal, and a different judge and court guardian were appointed for the best interests hearing.

At that hearing Hayden J determined that continued treatment for Archie was not in his best interests[3], a finding which was not overturned by a series of appeals by his parents[4].  Archie died in hospital a short time after withdrawal of support.  There has been a public pre-hearing of the inquest into his death but the full inquest has yet to take place.

Opinion of Trust Clinicians

As the Guardian article quoted above reminded us, courts do not always follow the opinion of Trust clinicians.  In the Raqeeb case, (where Tafida, aged five, had suffered a massive bleed on the brain because of an undiagnosed inborn defect) full consensual access to Tafida and her notes was accorded by her NHS clinicians to doctors from an Italian paediatric unit.

There was broad agreement that although she had not suffered brain stem death, she could not be “cured” and would probably require permanent ventilation, with the remote possibility of a return home in the UK on ventilation.  The Italian hospital would give her exactly the same care as the NHS Trust.

After a full balancing exercise, Macdonald J allowed her to be moved to Italy, because of her rights under EU law to be treated in another Member State[5].  However, Brexit may well have unwittingly destroyed this option for future cases.  Three years later, Tafida is still alive, but as of earlier in 2022 was still in the same Italian hospital, apparently still needing some ventilation to sustain her.

The Mediation Process

What has the mediation process and a neutral mediator to offer in such circumstances?  Certainly Baroness Finlay of Llandaff, a very experienced palliative care physician with an interest in this area, has expressed a strong view that families and clinicians should engage in independently managed mediation at an early stage in order to reduce the adversariality of litigation from such a sensitive area.  She said to Times Radio[6]:

I’m hoping that by the end of the summer we’ll have an inquiry into different ways of handling these very, very difficult cases so that there is independent mediation.

And I say independent because, if it’s supplied by the hospital, or it’s supplied by the parents, one side may feel mistrustful of the other. But to be in the situation of adversarial conflict doesn’t help anybody. The parents don’t want to go to court. The doctors don’t want to go to court. The managers don’t want to go to court….My worry is that these cases are going forward to court too quickly and too early, and that we need an alternative way of managing the communication between the doctors and the parents and sometimes others in the family as well.

Charlie Gard Case

Mediation for so-called “right to life” cases came into particular judicial prominence in 2017 in the Charlie Gard case, where Great Ormond Street sought permission to allow him to die. Francis J dealt very specifically with the subject of mediation in one of the Family Division hearings concerning Charlie[7] when he said:

I believe that it would, in all cases like this, be helpful for there to be some form of Issues Resolution Hearing or other form of mediation where the parties can have confidential conversations to see what common ground can be reached between them. I believe that that type of hearing, be it Judge led or some other form of private mediation, would have led to a greater understanding between the parents and the clinical team in this case. I am not saying that it would necessarily have led to a resolution, but I think in many such cases it would and I would like to think that in future cases like this such attempts can be made.

He returned to the subject as follows:

I want to mention, again, the subject of mediation. Almost all family proceedings are now subject to compulsory court-led dispute resolution hearings. This applies in disputed money cases, private law children cases and in all cases involving the welfare of children who might be the subject of care proceedings. I recognise, of course, that negotiating issues such as the life or death of a child seems impossible and often will be. However, it is my clear view that mediation should be attempted in all cases such as this one, even if all that it does is achieve a greater understanding by the parties of each other’s positions. Few users of the court system will be in a greater state of turmoil and grief than parents in the position that these parents have been in and anything which helps them to understand the process and the viewpoint of the other side, even if they profoundly disagree with it, would in my judgment be of benefit and I hope that some lessons can therefore be taken from this tragic case which it has been my duty to oversee.

Development of Mediation in Right to Life Cases

Mediation was not deployed in the Gard case in the end, but it has been used since then in similarly difficult life-or-death cases involving children, with Family Division judges firmly endorsing its use. It was not deployed in the Raqeeb case.

In Battersbee it was initially declined and then reopened as a possibility but never actually deployed. What (if any) light can I shed on the use of mediation of such cases, having myself been involved in such mediations?

I must start by cautioning the reader that confidentiality in accordance with the mediation agreement signed in each case binds all those who participate in mediations of this, and indeed any, kind, including the mediator.

Broadly, mediation is in my view worth trying in most cases, as early on as possible, but subject to certain caveats which I discuss below.  It must be remembered that while mediations of other kinds of case frequently lead to settlement on the day, it is rare that immediate total agreement between families and clinicians will emerge after a single meeting in “best interests” cases.

Time to absorb what emerges and to adjust to further material or changes and challenges to perspectives is often required.  But what is almost always of enormous benefit is the opportunity for honest conversation in a safe and quiet environment, free from public gaze or external pressures, so that parties can really understand each other, saying things that they know cannot be reported to the judge if the case does not settle, and thus being able to explore what if any common ground might exist, however surprisingly.

This is done within a carefully and sensitively managed process, with the opportunity to try out ideas with the mediator in private before exchanging them with the other party.  The mediator can then offer guidance as to the best way to order events, the most appropriate ways for participants to meet, and the order in which topics might be discussed.

Even where no agreement emerges at the mediation, it is in my experience possible for the mediation to create a co-operative atmosphere which then leads to an agreed outcome which avoids a full court hearing.  Again confidentiality prevents me from giving further details.

Great Ormond Street v X and Others

A striking instance of what can be achieved is to be found in Great Ormond Street v X and others[8].

GOSH sought permission to give only palliative care to a grievously ill child.  They had not involved the parents in any way in the ethics committee meetings at which withdrawal of treatment was discussed, and the judge was critical of this.

Mediation was actually insisted on by the court and duly convened, as a result briefly delaying the final court hearing.  No overall agreement was reached at mediation, but the judge observed that it had improved communications between clinicians and family, and the family did come to accept that there should be no more elective surgery, only palliative surgery.

The court carefully set terms for future medical treatment.  As there were no signs of campaigning or threats to staff, as had occurred in other cases, the judge allowed GOSH to be named as the applicant but ordered that the identities of all medical staff and family members be kept confidential.

Alfie Evans and Isaac Haastrup Cases

These outcomes contrast sharply with what happened in the well-publicised cases of Alfie Evans and Isaac Haastrup, where family requests to have each child removed from the jurisdiction were apparently buttressed by clandestine examinations of each child by the same Europe-based doctor without court authority and without the knowledge of the treating clinicians.   The court was told that he gained entry by being represented as a friend of the family.

It is entirely unsurprising that families of stricken children will want to set their faces against giving up hope by participating in a conscious decision to end their lives. In the Alfie Evans case, however, large demonstrations were mobilised outside Alder Hey Hospital, death threats were apparently made to some of the treating clinicians, and there was even a suggestion from one of the purported legal advisers to Alfie’s parents that they could and should bring a private prosecution for murder against the doctors involved.  As to the demonstrations outside the hospital, the Court of Appeal in the first Evans appeal was moved to add the following to its judgment:

• It is not surprising that Alfie’s tragic situation should cause emotions to run high. But, we cannot conclude this judgment without recording our dismay and concern at what we have been told have been the consequences of what has taken place at the hospital in recent days. These matters have not been the subject of any court determination. However, if true they are alarming. We were told that some members of the hospital staff could not get to the hospital because of road blockages; that staff, patients and family members were upset and frightened by what was taking place; that a group supporting the parents went into the Paediatric Intensive Care Unit to the concern of staff. If these events have taken place it is not difficult to see how they would impact negatively on the treatment being provided to patients at the hospital. Hospitals must be places which provide peace and calm.  

• In conclusion, the case advanced on behalf of the parents again seeks to make their own views This is the foundation on which their present application is based. That it provides no foundation at all has already been made established by the previous decisions in this case. Preventing them from removing Alfie from hospital does not breach their rights. Indeed, it would breach Alfie’s right to have decisions made as to what treatment he should receive by application of the test of his best interests. That this is the right test – the “gold standard” – is clear. The decision must be governed by an objective assessment by the court of what is in the child’s best interests. By that test the court determined whether Alfie’s future treatment, including the withdrawal of ventilation, should take place at the hospital in England or whether, as the parents sought, they should be permitted to take him to another hospital for the purposes of his receiving treatment there. Hayden J determined that the parents’ proposals were “irreconcilable with Alfie’s best interests”. This decision was upheld by the Court of Appeal which expressly stated that “transfer to another country could not possibly be in Alfie’s best interests”. The Supreme Court refused permission to appeal.

As to the activities of one of the legal advisers, in the last hearing about Alfie Evans, Hayden J said:

….A statement had been prepared bearing the now instantly recognisable hallmark of Mr. Pavel Stroilov, a law student and case worker for Christian Legal Centre (CLC), who yesterday encouraged [the father] to seek to issue a Private Prosecution alleging murder against some of the doctors at Alder Hey. It was properly rejected by the District Judge. Today’s efforts by Mr. Stroilov were equally inconsistent with the real interests of the parents’ case. The Witness Statement, which Mr. Diamond [counsel for the father] tells me Mr. Stroilov prepared, is littered with vituperation and bile, critical of those who have done so much to help Alfie, attacking the system generally and the Court in particular. I extract the following paragraphs by way of example:

“9. This said, like any patient coming off prolonged ventilatory support, Alfie was coughing and short of oxygen. For some six hours after the extubation, Kate and I begged the Hospital staff to provide some oxygen to him, in accordance with good practice of palliative care. The staff refused to do so for six hours on the grounds that the Court had ordered it was not in Alfie’s best interests for his life to be supported. Likewise, the Hospital staff refused to provide hydration.

12. It cannot possibly be in Alfie’s best interests now to suffocate or to starve him to death. His treatment must be resumed. This is inhumane and Alfie could continue in this state for weeks; this is distress to Alfie.
13. Further, it is clear that Alder Hey has let Alfie down badly, by incorrectly assessing his condition; persisting in that assessment in the face of inconsistent up to date evidence such as the videos, and our observations; and refusing even to talk to an eminent colleague – the president of Bambino Gesu who urgently came to Liverpool yesterday – for the fear she might contradict their view. We feel that Alder Hey would now rather let Alfie die unnecessarily than admit their mistake. We no longer have any trust in Alder Hey, and that trust cannot be restored. In these circumstances, it is not in Alfie’s best interests to continue to be treated or cared for at Alder Hey.
14. With the greatest respect, we make similar criticism of the Courts, who have uncritically accepted the ‘consensus’ expert view. …
15. We feel that we are trapped in a cruel bureaucracy; and we have not received justice…”

This suggests a real problem with some rather more difficult and worrying background activities which have been underpinning cases of this kind.

More than one judge has expressed concern about the fact that parents have been subject to “infiltration” by interest groups who persuade families to enlist them in supporting their case, and who ensure that the litigation goes as far as it can, perhaps primarily for the furtherance of their own interests and views as much if not more than for the interests of the family and (as English law insists) for the paramount interests of the child.

In his judgment in the second appeal in Evans v Alder Hey[9], the former President of the Family Division, Macfarlane LJ said:

39    Before concluding this judgment, I wish to repeat something I said during the course of submissions. It has again become clear to this court that these two parents have been assisted by supporters in a number of respects but principally from the focus of the court in terms of the preparation of their now two separate legal cases. We were reminded that in the past leading counsel, Mr Stephen Knafler QC, acting then on behalf of both of the parents[10], deprecated the involvement of legally qualified but not practising lawyers who introduced (to use Mr Knafler’s phrase) a “darker side” to what was otherwise valuable support. It has become apparent to this court, and we referred to it in the postscript to the judgment that we gave on 6 March 2018 in relation to the first appeal, that there was some coordinated organisation of potential medical experts in relation to more than one of these vulnerable families, the same expert being covertly introduced to Kings College Hospital to examine secretly one child in the paediatric intensive care unit there and the next day to go to Alder Hey again covertly and secretly, to purport to examine Alfie there.

40     It is not the function of this court now to embark upon an investigation of these matters, but it has become apparent, in particular in terms of the information we have been given about the instruction of the new legal team for the mother today and the drafting of the grounds of appeal upon which Mr Coppel purported to rely at the start of his submissions, (with its unhappy emphasis on prospective criminal proceedings against the staff at Alder Hey) that the representation of the parents may have been infiltrated or compromised by others who purport to act on their behalf. I say no more, but I have in mind the tenuous nature of the direct contact that Mr Coppel and his instructing solicitors had with the mother and yet the clear grounds of appeal that he was instructed to put forward on her behalf, which were, it now transpires, drafted by a lawyer who is not before the court. It may be that some investigation of whether, in this country, at this time, parents who find themselves in these awful circumstances, and are therefore desperate for help and vulnerable to engaging with people whose interests may not in fact assist the parents’ case, needs some wider investigation, but I do no more than draw attention to the concern that this court has at what seems to be an unhelpful development which may, in reality, be contrary to the interests of such parents.

The postscript referred to in the earlier judgment related to the fierce condemnation by the Court of Appeal of the clandestine examination of the child without court authority (and thus flatly in contravention of the Family Procedure Rules) and without the agreement of the treating clinicians, by a purported foreign doctor.

Arrangements had been made for the same foreign doctor to examine Isaiah Haastrup in a similar but unrelated claim during his trip to the UK.  The evidence obtained by this means was rejected firmly by judges in both cases. The whole postscript repays reading, but it concludes:

146     Now that the unwelcome and, we would say, dangerous development of supporters encouraging parents to arrange for those without authority to conduct secret medical examinations of these very vulnerable children has come to light, we consider that it is appropriate to record our condemnation of this practice. Irrespective of the extreme nature of the issue before the court, in future cases the parents and those representing them should expect the judge to refuse permission for evidence obtained in this clandestine manner to be admitted in the proceedings. In any event, as was the case both in the present proceedings and in Haastrup, the court is unlikely to afford much, if any, weight to a medical examination that is conducted in such circumstances or to the opinion of a doctor who has acted in this wholly unprofessional way.

Criticisms

Quite apart from these criticisms, it is worth observing that someone – perhaps the Christian Legal Centre, which is identified as having instructed counsel at a later stage in the Evans case – has helped the family to identify foreign doctors to offer help, the possibility of helicopter transfers abroad without cost, and even enlisted personal support from the Pope.

Of course families will look for any port in the storm, and gratefully accept help which really does enable them to express their wishes and articulate what they perceive to be the interests of both themselves and the child.

But the courts have certainly raised serious doubts as to whether such help is always constructive, or in the best and paramount interests of the child.  Certainly my sense is that such background input is going to make progress in mediations very difficult to achieve, particularly where that input is determined to push cases to court to seek public determinations which buttress their aims and objectives.

It would be a pity indeed if mediation got a bad name simply because peripheral participants persuaded families not to settle or even to engage properly so as to advance their own agenda.  I have certainly seen such problems at first hand.

A mediation may still confer some benefit on the parents so long as the mediator has an opportunity to speak to the parents separately, giving them an opportunity to pause and consider.

But protracted litigation may well still follow if the influence and financial support of those who wish to use the litigation to advance their cause is powerful.  There will also be a worry that such supporters may be tempted to breach the confidentiality to which everyone attending a mediation subscribes as to disclosure of the content of mediation discussions and undermine the safety of the process for all.

The Mediators

As to the mediation of cases of this nature, they are unsurprisingly demanding, and not for the inexperienced mediator.

These cases need sensitive handling, with care being taken to ensure the best possible communication between those personally and professionally agonised by such events.

An independent neutral who can design a process to suit the feelings and positions of those involved in such difficult cases and dilemmas, who can consult privately with each team and help to make possible and manage difficult communications in any meetings involving all concerned is perfectly suited to help people find a way through such situations. If mediation can be deployed before litigation is commenced, so much the better.

Mediators capable of dealing with such highly charged cases are beginning to develop experience of this kind of case, often based on having handled clinical negligence claims for catastrophic injury, such as birth hypoxia and cerebral palsy in severely disabled children with normal life expectancy.

The high skills required probably militate in favour of a court-approved cadre of specialist mediators, perhaps through an approved service provider organisation, giving the Family Division or Court of Protection some oversight over those appointed without compromising the independence of the approved mediators.  Comparable arrangements already exist in the Court of Appeal Mediation Scheme and the NHS Resolution Clinical Negligence Mediation scheme.

Beyond Settlement

Complete settlement to satisfy all parties will be difficult to achieve in “best interest” cases. Even where there have been previous clinical ethics committee meetings involving the Trust and the family, the introduction of a neutral chair alters the dynamic, reducing the risk of perceived procedural unfairness, relieving each team from the responsibility of running the process as well as advocating its own position.

Use of mediation in these virtually unresolvable cases underlines the fact that mediation is not “just about settlement”.  “Mediation” involves acting as an intermediary in the area ‘between parties at variance’, as the Oxford English Dictionary puts it.

The intention of the process is to improve matters and perhaps also to help people conclude their differences by agreement, but its main characteristic is to facilitate communication and understanding and not necessarily to achieve (let alone in any sense compel) settlement.

It is also about making it possible for those in dispute to have a really important conversation under the best possible circumstances, with the process managed neutrally to eliminate so far as possible any power imbalance or reluctance to communicate in circumstances where honest and clear communication is absolutely vital.

In Re M (declaration of death of a child)[11], an NHS Trust obtained a declaration from a Family Division judge that M was dead (based on demonstrable brain stem death) and that ventilation could be removed despite opposition by the parents, who sought permission to appeal.  Refusing permission, on the basis that there was no reasonable ground for appealing, and when dealing with criticism about the time taken to reach a hearing, the President of the Family Division commented in the Court of Appeal:

In so far as the Trust chose to exhaust options one-by-one before issuing proceedings, including attempts at mediation, they are not to be criticised. However, in future cases, it should not be thought that the mere issue of an application to the court is such a negative step as to compromise other attempts to resolve the matter by way of second opinion, further tests or mediation.  Indeed, in a proper case, where an early application is made, as well as adjourning to allow the parents to obtain legal representation, the court itself might direct and facilitate reasonable further testing and may encourage mediation.

This decision predated the Civil Justice Council’s report Compulsory ADR published in July 2020, which found that mandating mediation was both lawful and largely desirable.  Maybe the Court’s firmness in requiring mediation to be tried in GOSH v M will become typical.

Besides the fundamental purpose of creating a environment in which family and clinicians can safely converse without fear of recrimination or adverse consequence, there are a number of issues identifiable from the court judgments in such cases that can and should be properly be aired, often in parallel, so as to sharpen each party’s risk appraisal of each other’s case.  These include:

• Appreciation of what the child’s own views might be, set against the family’s beliefs and standards;
• The nature and extent of further testing and treatment options;
• Whether there are still unexplored clinical options which might properly require further expert opinion;
• What urgency there is about present and future decision-making;
• Alternative treatment and palliation pathways;
• Possible terms of agreement (with out the need for a court order) to withdraw ventilation and nourishment[12];
• Whether the child can be moved home for palliative care;

Baroness Finlay’s insistence on the importance of the perceived independence of the mediator is quite right, to which I would add the need for an entirely neutral venue.

The necessary element of objectivity in which to conduct the process is hard to achieve if it is convened on hospital premises and chaired by Trust personnel, even senior managers. Such mediations are best convened at a convenient hotel or a mediation provider’s offices.

Moving Forward

What is needed is an identified panel or panels with approved providers (rather like the NHS Clinical Negligence Scheme), listing appropriately qualified and experienced mediators with the requisite sensitivity and flexibility, as well as being ready to take on a heavy case urgently. Unfortunately, litigation of this kind is often felt to need urgent conduct, as the court in Re M noted, and it may be necessary to run mediation in parallel with court processes, despite Baroness Finlay’s plea for mediation before issue of proceedings.

What is also vital is to ensure that families receive good quality objective legal advice based on secure funding, preferably Legal Aid.

As Haroon Siddique’s Guardian article goes on to point out, cases of this kind have been populated and stimulated by special interest “right-to-life” groups like the Christian Legal Centre who have at times apparently funded the family’s representation and run the risk of being seen to take it over.  They were not involved in one eventually productive mediation of mine.

If ever there were cases where Legal Aid should be considered as a matter of course, subject to means, it is these. Whether the courts have any power to regulate the participation of undesirable supporters remains to be seen. Their participation in mediations is likely to make a productive outcome far less probable.

Perhaps the most telling argument for deployment of mediation in cases such as these is out of concern for the judges called upon to make agonising determinations over life or death.

It must surely be helpful for them to know that before they are called upon to take that step, they can be assured that there has been a thorough, independently managed review of all the issues in a safe and confidential environment.

Family and clinicians will have been able to engage in full and frank discussion both across a table and also in private, with a skilled mediator unafraid to help every participant from looking honestly at the situation.  The judge will know that such discussion did not lead to a full meeting of minds.  In a few cases mediation will lead to a meeting of minds and the judge will not be called upon to make such a decision after all, perhaps never knowing that mediation “worked”.

If the case does come to trial, though, the judge will also know that every option has been properly explored.  To repeat what Francis J said in Gard:

mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions.

But it is really important that such mediations are populated by the immediate family, the Trust and the Guardian instructed by CAFCASS), all with bona fide legal advisers who have no separate agenda of their own to pursue.

Then it will be possible for really constructive conversations to take place, even if it does not lead to a full meeting of minds immediately or at all.  The important thing is that a proper attempt to find resolution will have been made, reassuring any judge with the fearful task of making a life or death decision that a really thorough exploration and discussion will have taken place in the best possible circumstances.

[1]      [2022] EWHC 1165 (Fam)

[2]      [2022] EWHC 1435 (Fam)

[3]      [2022] EWFC 80

[4]      [2022] EWCA Civ 935;  [2022] EWCA Civ 1055; [2022] EWCA Civ 1106

[5]       [2019] EWHC 2531 (Admin) and [2019] EWHC 2530 (Fam)

[6]     As reported by The Guardian

[7]     Great Ormond Street NHS Trust v Yates and Gard [2017] EWHC 1909 (Fam).

[8]   [2020] EWHC 1958 (Fam)

[9]   [2018] EWCA Civ 984

[10]  Initially the father acted in person, but then obtained legal representation.  By the time of the second appeal, Mr Knafler and his instructing solicitors were no longer instructed for the father, replaced by Mr Diamond instructed by the Christian Legal Centre. The mother for the first time was separately represented by Mr Coppel QC.

[11]   [2020] EWCA Civ 164

[12]   See An NHS Trust v Y  [2018] UKSC 46