As Counsel went to press, the parents of seriously ill Alfie Evans lost the latest in their series of challenges to a High Court ruling that life-sustaining treatment be withdrawn from their 23-month-old son. Alfie suffers from an undiagnosed neurodegenerative condition, and the Court of Appeal dismissed their argument that their wishes as parents should ‘trump’ the best interests of the child. In the days since Hayden J’s endorsement of an end-of-life care plan for Alfie, interest in this case has reached fever pitch, and hundreds of supporters have been demonstrating outside Liverpool Alder Hey hospital. This article examines the judicial approach to best interest cases.

Remember Ashya King, whose case hit the headlines in 2014? Ashya’s parents removed him from an English hospital where he was awaiting treatment for cancer and absconded with him to Spain. They feared that the chemotherapy he was to undergo at Southampton General Hospital would leave him brain damaged and believed his best chance lay in the innovative proton beam therapy being pioneered in Europe. They were arrested in Malaga at the behest of the British authorities and jailed in Madrid for 72 hours on child cruelty charges. Then the High Court in Re Ashya King [2014] EWHC 2964 (Fam) ruled they had the right to take their son abroad against the advice of his doctors. After tumour surgery at Southampton, Ashya underwent proton beam therapy in Prague. According to media reports in March 2018, he is now said to be clear of cancer.

At the heart of Ashya’s story lies the question of what was in his best interests. It would seem that the court’s 2014 ruling has been borne out by events. But what if the decision had gone the other way? A cynic might point out that had the parents not raised the requisite funds for his travel and treatment abroad, the court would have been less willing to sanction their proposals; the NHS cannot be prevailed upon to fund expensive treatment for patients whose exceptionality only rests on claims by their families.

The best interest test

Putting resource allocation aside, the more recent cases of Gard (A Child), Re [2017] EWHC 1909 (Fam) and Kings College Hospital NHS Foundation Trust v Haastrup [2018] EWHC 127 (Fam) were decided against the parents, even though the former involved no demands on the state other than to release the child from hospital. Both cases involved brain-damaged children whose continued survival depended on the full resources of the hospital intensive care units. In Charlie Gard’s case the parents raised enough money to pay for his travel and treatment abroad. Isaiah Haastrup’s parents simply opposed the withdrawal of life support.

The focus in both cases was on whether continued existence was in the best interests of the patient, whether or not he was being kept alive in pursuit of novel treatment abroad or simply to acknowledge the sanctity of life. The rights of the parents under the European Convention, the UN Convention on the Rights of the Child and resource allocation (as R v Cambridge Health Authority ex parte B [1995] EWCA Civ 49) are all factors that weigh in the balance. These wider considerations are included in guidance published by the Royal College of Paediatrics and Child Health in 2015: Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice, which incorporates the relevant statutes: the Children Act 1989, UN Convention on the Rights of the Child, Human Rights Act 1998, Mental Capacity Act 2005, Equality Act 2010, the right to life under Article 2 of the European Convention of Human Rights and Children and Families Act 2014.

But whether or not the case involves someone who cannot communicate their wishes, the central test is if the patient’s suffering is such that it cannot be in his or her best interests to carry on living. Put thus starkly, the question appears to become one of medical science only, since those best qualified to report back to the courts from the frontiers of pain, where victims cannot speak for themselves, are the doctors.

Mapping the test onto reality

How does the best interest test map onto the reality of a patient in a hospital bed? It is worth looking at the case of the young soldier who suffered brain trauma whilst serving in Afghanistan. In 2017 Jeremy Baker J ruled in the Court of Protection that the young man, ‘D’, could use his Ministry of Defence (MOD) compensation award to travel to Serbia for stem cell treatment that might or might not alleviate his condition: D, Re (Medical Treatment) [2017] EWCOP 15. The alternative was for him to stay in hospital, paralysed, and receive rehabilitative treatment for the rest of his life. Baker J drew up a balance sheet of the drawbacks to the experimental treatment against the benefits to D of respecting his autonomy.

Some might say this was not on ‘all fours’ with the life support cases, although there are instructive parallels. For a start, D lacked capacity as a result of his injuries so was represented by the Official Solicitor as litigation friend. But his real friend was his mother, acting in person. She (like the parents of Ashya King and Charlie Gard) had researched treatment options for her son and had identified stem cell therapy as a possible way forward. Her application was opposed by the MOD, which did not contemplate with relish further cases where injured servicemen might be entitled to treatment abroad, thus increasing their compensation claims.

So far, so similar to the baby cases. But in D’s hearing the judge was able to listen to what D had to say; even though he lacked capacity, this evidence contributed to the best interests analysis. The focus on psychological suffering was the fulcrum of this case. A conscious adult, even one without capacity, can at least provide indirect testimony as to his own wishes. After four years in hospital, the prospect of an indeterminable number of years before his death enduring rehabilitation therapy that was leading nowhere, was clearly intolerable to D. He communicated his wishes to his mother, and she told the Court of Protection that her son was ‘heavily disabled, still young and very depressed about his condition’.

Jeremy Baker J also faced a more delicate problem than in the withdrawal of life support decisions. D faced risks the minute he left hospital and stepped on an aeroplane to the clinic in Belgrade. The stem cell therapy brought hope, but also the risk of developing cancer (stem cells serve tumours as well as creating healthy tissue). Other risks were more likely, such as those attendant on a lumbar puncture, which D would have needed to get the stem cells into his spinal cord. Charlie Gard and Isaiah Haastrup, on the other hand, were already under pressure from these infection-inducing mechanics; these were the things that were keeping them alive. Is it somehow ‘easier’ to release a critically ill patient from life support, than it is to respect the autonomy of someone who may not lack capacity but can still communicate his wishes? The former is much more dependent on medical evidence than the latter, which is par excellence part of the judge’s territory; it involves ethics and ordinary evidence from individuals.

Mental capacity and medical treatment

D is something of an outlier in these cases as he was able to talk to the judge. When it comes to determining best interests of an adult who is so critically ill that there is no question of any interaction with them, the determination of best interests is more dependent on medical evidence; unless there is reliable evidence of the patient’s own wishes. But this is perilous territory. Remember the case of M, W v M & Ors [2011] EWCOP 2443, a woman in her forties who suffered a catastrophic brain injury after succumbing to viral brain stem encephalitis in 2003. By the time her case came before the Court of Protection, she had spent eight years being fed and hydrated via a gastrostomy tube. Although ‘clinically stable’, she was unable to move herself and was doubly incontinent. The Tony Bland precedent was of no help to her. The young victim of the Hillsborough Stadium disaster had been in a persistent vegetative state (PVS), and the House of Lords in Airedale NHS Trust v Bland [1993] UKHL 17 concluded that it was in his best interests to be allowed to die.

By the time M’s case came to court, diagnostic technology had moved on. Patients thought to be in a PVS state were found to be responding to certain stimuli. There emerged a new category of brain damage: the ‘minimally conscious’ patient. Against this background, Jeremy Baker J refused the woman’s family’s application to withdraw life support, even though she had said she would never want to ‘live a life dependent on others’. This was because, the judge said, in assessing where the patient’s best interests lie, the courts must observe the ‘fundamental principle’ of the sanctity of life. Referring to an earlier case, he observed that: ‘there is a very strong presumption in favour of taking all steps which will prolong life and, save in exceptional circumstances, or where the person is dying, the best interests of the patient will normally require such steps to be taken’. Since there was evidence that M did have ‘some positive experiences’ there was a ‘reasonable prospect’ that these experiences could be extended by a ‘planned programme of increased stimulation…’

Many legal commentators were dismayed at the implications of this ruling, not just for the patient herself but for the future effect of carefully drafted ‘living wills’. If these are rendered nugatory by medical advances in detecting responses in stimuli from unconscious patients, then what is the point of having them at all? As I wrote at the time: ‘Following the detailed evidence about M’s case is like watching a helpless laboratory subject as she is poked and prodded for signs of response, which is ironic as the entire thrust of the judgment – all 261 paragraphs – is devoted to the question of her “best interests” under s 4 of the MCA’ (‘Court refuses family’s “right to die’’’, Rosalind English, 29 September 2011).

M’s case takes us back to Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, the first case to be decided under the new Mental Capacity Act 2005. A 68-year-old man, David James, had suffered severe complications as a result of treatment for cancer of the colon. By the time the case came before the Supreme Court he had in fact died after suffering a cardiac arrest. But the importance of the issues involved meant that the Supreme Court heard his widow’s appeal against the Court of Appeal’s declaration that it was not in Mr James’ best interests to further undergo ‘futile’ treatment.

The Supreme Court focused its reasoning on the underlying legality of medical treatment. If a patient is not able to consent to treatment then any invasive treatment is unlawful, unless it is deemed to be in his or her best interests. Sanctity of life is no longer a ‘given’ in this consideration. On the other hand, treatment which does not improve the patient’s underlying condition but at least palliates his suffering is not ‘futile’ and therefore may be in his best interests. And the assessment of this factor can only be made if it is possible to obtain the patient’s own point of view. As barrister Kate Beattie observed in an article on that decision: ‘the case makes clear that the very purpose of the best interests test is to consider matters from the particular patient’s point of view; there is no room for an ‘objective’ or ‘reasonable patient’ test. This does not mean that it will be easy to ascertain, in a particular case, what an incapable patient’s wishes are; but that remains the difficult and important job of the Court of Protection’ (‘Supreme Court weighs in on patient’s best interests and the meaning of futility’, Kate Beattie, 3 November 2013).

The young injured soldier D and his mother may not have made an objectively reasonable decision to abandon hospital rehabilitation in favour of experimental stem cell treatment in Serbia, but from his point of view this was the best possible option and therefore it was decided that this course of action was in his best interests.

Contributor Rosalind English is an academic consultant at the Chambers of Philip Havers QC, 1 Crown Office Row and editor of ukhumanrightsblog.com