My Lords, this amendment has been several years in gestation. It dates back to the case of Charlie Gard in 2017. There have also been other cases that suggested we must do better than rush to the courts, with all the anguish that causes to parents and clinicians alike, let alone the expense to the NHS and others. That is why I am proposing that there should be independent mediation where there is a serious disagreement between loving parents and the clinical team caring for a child who is not Gillick-competent.
Difficulties arise when the child’s prognosis seems hopeless to clinicians but the parents do not share that view and want to know that they have tried everything. The clinicians may feel that the best interests of the child would be for the child to be allowed to die, but the parents can perceive this as life being ended, even though the child would have already died without all the care and interventions that had been put in place. In other words, when death occurs, the child dies of their underlying condition. The clinicians have not euthanised the child. However, pressures in the media towards doctors administering lethal drugs and euthanasia have portrayed death as a solution, and there is a perception that our overwhelmed NHS is desperate to clear beds, save money and, sadly, even cover up shortcomings.
However, no one has interests when they are dead; they are a corpse. By contrast, the parents feel that any improvement is worth having, and that it is in the best interests of the child to continue to experience their love and affection and to try a novel therapy that seems, on balance, possibly to do more good than harm—that is, it does not cause significant harm to the child—and, if there is no improvement, it is easier for them to accept the natural death of their child.
In Charlie’s case, a novel treatment seemed to offer hope, a nucleoside powder to be added to feeds of mitochondrial depletion syndrome. This did not involve invasive procedures and was estimated by New York-Presbyterian Hospital and Columbia University Irving Medical Center’s Dr Hirano to have a 56% chance of success. That is important because it is over 50%. In 13 out of 18 children with TK2 mitochondrial depletion it had appeared to be beneficial but it had not been tried in RRM2B, the variant that Charlie had. This was not a distressing invasive treatment from a dubious medical centre, and the parents would gladly have had Charlie as part of an N of 1 trial, accepting failure but knowing that they had done everything.
The total cost of a three-month trial of nucleoside powder would have been about £3,000. Contrast that with the costs of over £250,000, made up of £205,225 costs to Great Ormond Street Hospital, almost £35,000 that his parents had to fundraise for, and £32,500 spent by Cafcass. That seems to be the norm. Cafcass also reported that in 2016 it was involved in 18 parent-doctor disputes that ended up in court. If these costs are indicative, that suggests around £4.5 million from the NHS each year.
No one should underestimate the intense emotional anguish of these parents in such cases, nor the stress and difficulty for the clinical team. The requirement that the parents can seek a second opinion means that they can do so swiftly, with full access to their child’s clinical record. This recognises the speed with which children can deteriorate when very ill.
Currently a second opinion may be sought only by a clinician. This part of the amendment would put the parents on an equal footing to ensure that they could seek one too. If there is a dispute between those with parental responsibility then, as now, the court would have to be involved. It is for the courts to veto inappropriate demands, and no clinician would ever be forced to administer a treatment that they did not view as being in the best interests of the child.
Rather than clinicians and parents being pitted against each other, with press interest and the risk of campaigning groups further polarising views, the amendment proposes that independent mediation must be offered. It needs to be independent to remove the suspicion that the mediator is entering the discussion biased towards the clinical establishment and away from the parents. Mediation is different from arbitration; it must be voluntarily entered into, using mediation processes designed to avoid legal disputes. It may help the parents to realise that the clinicians’ decisions are right after all and in the best interests of the child. Indeed, such realisation is evident in some of the very sensitive judgments given by the court.
The amendment would focus on the balance of probabilities. There is no absolute line because each case is different. If the dispute remained intractable, the case would proceed to the court, where the court would have to take into account all the evidence and consider whether the risk was significant. “Significant” is not a precise medical term; it would leave it to the court to decide whether the risk of harm involved in the parents’ proposal was sufficiently significant to interject across their parental responsibility and prohibit the proposed treatment. It would create the legal test of “disproportionate risk of significant harm” to assess the balance of factors, replicating the legal test already used by social services under the Children Act 1989 to consider whether to remove the child from their parents’ care. This legal test would sit before, rather than replace, the current “best interests” test, which is very broad and can be subject to different interpretations.
Contrary to the misleading briefing that some Peers may have received, the legal test in the amendment would not allow a person with parental responsibility to force any intervention. The court must always be, and would remain, free to objectively judge the issues. In the rare cases where disputes still reach litigation,
access to legal aid would ensure families can access justice without being forced to rely on outside interest groups to fund the case.
The aim of this amendment is to solve some major problems for the Government. It would ensure resolution of some distressing prolonged disputes between loving parents and clinicians, disputes that benefit no one, and would reduce the likelihood of cases escalating to the courts and the millions of pounds in litigation costs. I beg to move.