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Precedent (Australian Lawyers Alliance) |
CONSENT TO MEDICAL TREATMENT IN CASES OF LEGAL INCAPACITY
LESSONS FROM THE CHARLIE GARD CASE
By David Hirsch
INTRODUCTION
In the usual course of determining consent to medical treatment for those without capacity, a parent or next of kin has the final say.[1] Their decision will be animated by what the patient would probably have wanted (if, for example, the patient’s wishes were expressed before capacity was lost) or by what the parent or next of kin believes will be in the patient’s best interests. These decisions are made every day in hospitals. They typically follow careful discussions between doctors and family members. In some cases, hospital ethics committees can become involved. Only in exceptional cases is recourse made to the courts which, in the exercise of their inherent parens patriae jurisdiction, can decide whether medical treatment should or should not be given, and the terms on which it may be given. In these cases, the controversial question of who gets to provide consent can arise.
In 2017, the world was transfixed by such an exceptional case.
THE CHARLIE GARD CASE
Charlie was the first child of English couple, Connie Yates and Chris Gard. He appeared to have been born in good health on 4 August 2016 but over the next eight weeks he developed feeding and breathing problems and was failing to thrive. In mid-October, he was admitted to Great Ormond Street Hospital (GOSH) in London, unable to feed or to breathe without a ventilator.
Charlie was diagnosed with a rare genetic disorder, Mitochondrial DNA Depletion Syndrome (MDDS). MDDS is diagnosed where mitochondrial DNA levels fall below 35 per cent of normal. Charlie’s level was just 6 per cent. The most common variant of MDDS involves the TK2 mutation. Only very rarely is the RRM2B variant seen. This is the one that Charlie had.
It was not long before Charlie’s condition deteriorated further. He remained ventilator-dependent and was tube-fed. He was, according to his doctors, blind, deaf, and unaware of his surroundings. By December he started to have epileptic seizures.
Connie and Chris supplemented the advice of the doctors at GOSH with their own internet research. They located Professor Michio Hirano, a neurologist in New York, who had expertise in the treatment of MDDS. He informed them of an experimental ‘nucleoside therapy’, a dietary supplement, that had been given to patients with the TK2 variant of MDDS with some limited improvement in some cases. Nucleoside therapy had not been trialled on mice let alone humans with the RRM2B variant, but there was no evidence that it would not be beneficial, either. Charlie’s parents now had something that had been disappearing fast: hope.
Charlie’s parents told the doctors at GOSH about Professor Hirano and they contacted him. Professor Hirano confirmed that there was no evidence of nucleoside therapy being beneficial to patients with the RRM2B variant of MDDS, but he said that benefit was theoretically possible. He said that a three-month trial would be needed to determine any effect and that toxicity from the therapy would be limited to diarrhoea. He added that if Charlie already had structural brain damage this would be a contraindication to nucleoside therapy.
A MRI excluded structural brain damage and the doctors at GOSH applied to the hospital’s ethics committee for permission to administer the nucleoside therapy. But before the committee met, Charlie suffered prolonged epileptic seizures leading to what his doctors described as ‘epileptic encephalopathy’. In the circumstances, they felt that nucleoside therapy would be futile and informed Connie and Chris that they did not consider further treatment to be in Charlie’s best interests.
In what can only be described as a very modern approach to problem-solving, Charlie’s parents returned to the internet. Connie set up a crowdfunding appeal and used social media to spread the word that GOSH was refusing to provide potentially beneficial nucleoside therapy – and the only chance to save Charlie was to go to the US where Professor Hirano said he would treat Charlie if his parents could pay for it. Connie posted on social media: “If we don’t raise enough money then we won’t be able to go to America for treatment and Charlie will die!”
Charlie’s cause struck a chord. A dedicated website called www.charliesfight.org was started and there were Facebook and Instagram pages and a Twitter account. An online shop sold merchandise like mugs, bags and bracelets and people could join Charlie’s Army to show their support. Money was rolling in and within a few months, 83,000 donations totalling over £1.3 million had been raised.
Legal proceedings
Clearly Charlie’s parents and the doctors at GOSH could not agree on his future medical treatment. The doctors maintained that the experimental nucleoside therapy was futile. But Connie and Chris, and the legions in Charlie’s Army recruited through social media, disagreed. Recourse to the courts was unavoidable.
High Court of Justice Family Division 11 April 2017[2]
GOSH applied for an order authorising removal of assisted ventilation and provision of palliative care only. They said there was no prospect of any meaningful improvement in Charlie’s condition, even with nucleoside therapy, and that continued ventilation would be painful and not in Charlie’s best interests.
Connie and Chris obtained pro bono legal representation. A guardian was appointed by the court to represent Charlie’s interests. Professor Hirano provided an expert report and the parents obtained an independent opinion from a neurologist in the UK. A hearing took place over three days in April 2017. Justice Francis explained:
‘[Although] the parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment [sic] in the child’s best interests.’[3]
The law required the question of best interests to be looked at from the point of view of the child, not the parents, and the question needs to be properly cast:
‘[The] question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of treatment.’[4]
GOSH’s medical witnesses confirmed that Charlie had no respiratory effort, could not move his arms or legs, was blind, deaf and had no awareness. There were no signs of normal brain activity, but he probably felt more than ‘low level’ pain.
The parents’ independent neurology expert agreed that Charlie’s condition would continue to deteriorate, he would require mechanical ventilation forever and that he would remain immobile with severe cognitive impairment.
Professor Hirano supplemented his written report with evidence by telephone. He had seen a recent EEG and concluded that it was very unlikely that Charlie would improve with the nucleoside therapy. He agreed that the chance of meaningful brain recovery was vanishingly small and that Charlie was in the terminal stage of his illness.
Despite the uncontradicted medical evidence as to the hopelessness of Charlie’s condition, Connie and Chris remained unfazed and resolute. They maintained that he could see and hear them and knew who they were. They insisted that his brain damage was not as bad as the doctors were making it out to be. They truly believed that the nucleoside treatment could work and said that Charlie deserved a chance.
Charlie’s guardian sided with GOSH and the medical experts, and submitted that continued ventilation and nucleoside therapy were not in his best interests.
On 11 April 2017, Justice Francis delivered a 28-page decision and ruled in favour of GOSH. He directed that GOSH could lawfully remove Charlie from the ventilator and be given palliative care only. He accepted that nucleoside therapy would be futile.
England and Wales Court of Appeal 23 May 2017[5]
Connie and Chris engaged a new legal team and appealed the decision of Justice Francis to the England and Wales Court of Appeal.
Their counsel, Mr Gordon QC, argued that where a choice exists between two viable alternative treatments the court should give priority to the autonomy of parents to choose the treatment they want for their child unless pursuing that choice would cause significant harm. He characterised nucleoside therapy as a viable alternative treatment and said the only harm that this could cause – the major side-effect of the treatment – was diarrhoea.
Lord Justice McFarlane, speaking for the Court, disagreed. In a dense, 30-page decision, his Lordship maintained that the correct legal test was the best interests of the child, not the autonomy of the parents. There was no basis for creating a new sub-category of cases where significant harm is a determining condition; either a medical treatment is in the child’s best interests or it is not.
His Lordship continued:
‘Mr Gordon’s submission, unfortunately for the parents, does not even begin to have traction. The submission is based on there being a viable alternative form of treatment available... There is no viable alternative treatment for poor Charlie. That is the incontrovertible consequence of the judge’s findings.’[6]
Foreshadowing the wider policy argument that was to come, Mr Gordon QC submitted:
‘By imposing the withdrawal of life-sustaining treatment upon the child of parents who hold a legitimate contrary view favouring alternative viable treatment involves intervention by the State on the family right to private and family life on a massive scale.’[7]
Despite what Lord McFarlane described as counsel’s skilfully and carefully developed submissions, the parents’ appeal was dismissed.
UK Supreme Court application for leave to appeal 8 June 2017[8]
By this point, Charlie’s cause was being embraced by many in the US and elsewhere who saw it as a fight between the rights of the individual and the pervasive power of the State. The Court was described as ‘A UK death panel’[9] and Charlie’s case was said to exemplify ‘the horrors of socialized medicine’.[10] Nigel Farage, then the leader of the right-wing UK Independence Party said, ‘I am disgusted Charlie Gard was blocked from US treatment.’[11]
With the momentum of a populist uprising, Charlie’s parents sought leave of the Supreme Court to appeal the decision of the Court of Appeal. Mr Gordon QC told the Supreme Court at the leave application:
‘The issue is whether the state has the power to intrude on decisions the parents have made in order to mandate that child’s death before it might come to an end. These are model parents trying to do all they possibly can for the benefit of their child. Their view on what is best for Charlie differs from the court.’[12]
He further cited Article 8 of the European Convention on Human Rights (ECHR):[13]
‘[D]ecisions taken by parents who agree with one another are non-justiciable. Parents and parent alone are the judges of their child’s best interests. Any other approach would be an unjustifiable interference with their status as parents...’[14]
Lady Hale, speaking for the Court, explained that parents were not entitled to insist upon treatment by anyone which is not in their child’s best interest. As for the argument based on the ECHR, it was settled law, she said, that in the event of a conflict between parental rights and a child’s rights, the child’s rights prevail.
Leave to appeal was refused, but the effect of Justice Francis’s 11 April decision allowing GOSH’s application was stayed pending an application by the parents to the European Court of Human Rights (ECtHR). With the refusal of leave, Charlie’s parents had reached the end of the legal road in the UK.
Further application to the UK Supreme Court 19 June 2017[15]
It had now been 11 days since the Supreme Court rejected the parents’ final application, but they had still not finalised and lodged their foreshadowed application to the ECtHR.
Eventually, the UK government applied to the Supreme Court for directions following a request made of it by the ECtHR to ensure that the declarations of Francis J on 11 April continued to be stayed, and Charlie kept alive, so that the parents could make their application to the European Court.
Clearly political pressure was mounting. And the UK Supreme Court found itself in an awkward position. GOSH opposed a further stay and so did Charlie’s Court-appointed guardian. Lady Hale, speaking for the Court, observed:
‘Every day since 11 April 2017 the stays have obliged the hospital to take a course which, as is now clear beyond doubt or challenge, is not in the best interests of Charlie. ... By granting a stay, even of short duration, we would in some sense be complicit in directing a course of action which is contrary to Charlie’s best interests.’[16]
With great reluctance but with respect, wisely, the Court extended the stay.
Application to the European Court of Human Rights 27 June 2017[17]
Connie and Chris eventually lodged an application for relief on their own behalf (Article 8 – right to respect for private and family life) and on Charlie’s behalf (Article 2 – right to life and Article 5 – right to liberty and security). The case was heard by seven judges who, by majority, dismissed the applications. The UK courts, they said, were meticulous in their reasoning and there was no basis for interfering with the decision.
Charlie and his parents had now well and truly exhausted their legal avenues. GOSH was entitled to cease ventilation and provide palliative care only. Charlie was not going to receive nucleoside therapy in the US.
But wait, there’s more...
Connie returned to social media where she announced that she was ‘Shocked beyond belief! You have no idea about our story or the truth!!’ She and her husband maintained that the doctors and the judges were wrong about Charlie. On 7 July she told viewers of Good Morning Britain ‘There is potential for him to be a completely normal boy, but we don’t know – because you just don’t know until you try’.
Legal appeals may have been exhausted, but support was still strong in other quarters.
Pope Francis weighed in, tweeting: To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all. US President Donald Trump tweeted his support as well: If we can help little #CharlieGard, as per our friends in the UK and the Pope, we would be delighted to do so. The US even passed a law granting permanent resident status to Charlie and his parents, so he could come to the US for his medical treatment. His parents posted a photo of him with his American passport!
With this international support, legions of social media followers, and armed with a petition of 350,000 signatures, Charlie’s parents were not about to back down. They told GOSH they had obtained new evidence and GOSH reluctantly, but wisely, had the matter resurrected and re-listed before Francis J so this new evidence could be heard. As it turned out there wasn’t much new, although doctors in other hospitals said they were willing to try to assist. Professor Hirano was still involved and said that, based on further studies since the previous April, his nucleoside therapy had up to 10 per cent chance of improving the condition of Charlie’s brain.
The case was re-opened, and Francis J heard more evidence over three days in July. Professor Hirano travelled to London to assess Charlie, a new MRI was done and there was a multidisciplinary meeting of experts. This time everyone – including Professor Hirano – agreed that further treatment was hopeless. Charlie’s parents had no choice but to withdraw their objections to Francis J’s 11 April decision.
On 28 July 2017 Charlie was taken off life support and died.
AUSTRALIAN CASES
TS & DS v Sydney Children's Hospital Network (Mohammed's case)[18]
The facts in Mohammed’s case were strikingly similar to those in Charlie Gard’s. The child had MDDS and was on a ventilator in a Sydney hospital since the age of 2.5 months. He was now 9 months old. He was blind, deaf, hypotonic, could not feed and had no awareness. Like Charlie, he also had epileptic seizures.
The doctors felt that Mohammed’s condition was hopeless and wanted to take him off a ventilator and give him palliative care only. The parents objected, saying that he was a fighter and should be given a chance to fight for his life as long as possible.
The parents initiated urgent legal action to prevent the hospital from taking their child off the ventilator. At 3:10pm on 21 December 2012, they called the duty judge of the Supreme Court of NSW, Garling J. He attended the hospital and convened a hearing between 6:30pm and 9:00pm. He heard from the parents and Mohammed’s three treating doctors. No lawyers. No legal submissions.
On 24 December, Garling J delivered a lengthy written decision which considered issues of capacity, the Court’s parens patriae jurisdiction, and the test of the best interests of the child. He considered the honest belief of the parents that their child should be given a chance to ‘fight on’ and he considered the medical evidence that the MDDS was progressive and inevitably fatal. He also considered that mechanical ventilation was painful and that Mohammed could feel some pain. His Honour concluded that it was not in his best interests that mechanical ventilation continue.
‘At best he will receive a temporary benefit. But it will not cure his condition, nor will it play any role in alleviating his outcome.
Mohammed's life is to be measured in the short term. He should not be subjected to pain and discomfort for the remainder of his life by being placed on mechanical ventilation from which he will not be weaned.’[19]
Justice Garling’s approach to Mohammed’s case was, for all intents and purposes, identical to that of the UK courts in the Charlie Gard case. But the decision was made, and the matter was completed, in three days.
Director Clinical Services, Child & Adolescent Health Services v Kiszko and Anor[20]
In the Kiszko case, the parents of a six-year-old boy disagreed with a hospital over cancer treatment. The hospital wanted him to have conventional chemotherapy and radiotherapy following the removal of a brain tumour. There was at least a 50 per cent chance of cure with combined treatment, but the chemotherapy needed to start right away. Without treatment, his life expectancy was about three months. The parents were opposed to the proposed treatment because of how their son would react to the side-effects. They were dubious about orthodox medicine and preferred alternative therapies, principally nutrition – understanding that these would not be curative – and palliative care.
The hospital ethics committee became involved. There were two legitimate views. One was that the parents’ position was irrational and inconsistent with science:
‘While consenting adults are free to choose such paths for themselves, it is ethically indefensible to impose such irrational beliefs on the lives of others and there are legal avenues that serve to protect children under these circumstances.’[21]
But the ethics committee added that it could ‘in particular circumstances support a view that the burdens and benefits equation might be in favour of a palliative approach to management, and this approach might be rational and ethically justifiable’.[22]
On balance, the ethics committee favoured active treatment, but the parents would not agree so the matter fell to the parens patriae jurisdiction of the courts.
At the first hearing, Thackray CJ directed that chemotherapy treatment be started soon as possible.
Three weeks later, the matter was back in court. At the second hearing, the issue was whether radiotherapy should now be given as well as chemotherapy. The hospital said it should, but the parents were opposed. There was conflicting expert evidence as to whether radiotherapy should be given, and the independent lawyer for the child argued it should not be. The child’s prospects of cure even with combined chemotherapy and radiotherapy had decreased with the passage of time as well. On this occasion, Thackray CJ would not order radiotherapy saying:
‘The medical specialists have respect for the opinion of the other, but they disagree as to the central issue of whether radiotherapy treatment, with all that entails, both positive and negative, is the best option for Oshin. In the absence of a consensus of qualified medical opinion, there is, in my view, no role for the state in directing the parents to act in accordance with one entirely valid opinion in preference to another.’[23]
It was not irrelevant that the parents had by this time taken to social media to criticise the hospital for ‘forcing’ them to accept radiotherapy. The spectre of an open conflict between the rights of parents and the power of the state (as eventually happened in the Charlie Gard case) loomed large.
About three months later the case was back in court again. The hospital sought a new order that radiotherapy be continued, along with chemotherapy and stem-cell rescue. The parents objected. They renewed their wish for palliative care only, citing the side-effects of continued treatment and of the long-term effects of radiotherapy even in the unlikely event of cure.
The hospital’s application was heard by a different judge. O’Brien J canvassed the history and repeated the oft-cited legal principles. He noted that medical opinion was divided and that the Court should be cautious about interfering with parental decisions where their views are not objectively indefensible. He prefaced his decision by saying what the case was not about.
This case is not about parental rights, nor is it about the perceived power of the medical profession. It is not about whether, in a general sense, quality of life is more important than duration of life, nor is it about the relative merits of traditional medicine and alternative or complementary therapies. It is not about overarching considerations as to the right to life, or the right to a peaceful death, nor is it about a philosophical consideration of the best interests of children generally.[24]
O’Brien J decided that no further treatment ought to be given and that palliative care was in the best interests of the child. His Honour took into consideration that ‘any perpetuation of the conflict over Oshin’s treatment will continue to diminish the ability of his parents to focus their energies solely on the provision of that support and love directly to him when he needs it most’.[25]
CONCLUSION
The exercise of medical decision-making power for patients who lack the capacity to consent to medical treatment is fraught with difficulty. The issues to be considered are medical, ethical and, increasingly these days, political.
Lawyers would be comfortable with the best interests test governing decision-making in this area. But the cool, rational and objective approach that we expect of the law is exercised in a climate that is increasingly heated, irrational and subjective.
As the Charlie Gard case shows, social media can mobilise a populist backlash and the ‘establishment’ forces of medicine and law can be in the firing line. Whether the best interests of the child test will prevail over the rights of parents to decide what’s best for their children waits to be seen, but it is surely under pressure. As the decision in Mohammed’s case shows, principled decisions can be made quickly – when no lawyers are involved! But as the Kiszko case also shows, sometimes it is in the child’s best interests not to interfere with parental decisions, even ones that opt for palliative care over a real prospect of cure, where intervention would disrupt the family dynamic.
David Hirsch is a barrister at Second Floor Selborne Chambers. PHONE (02) 9233 2206 EMAIL dhirsch@selbornechambers.com.au.
[1] Typically, by a parent for children and a person with a power of attorney, if appointed, or next of kin if not, for an adult.
[2] Great Ormond Street Hospital v Constance Yates and Ors [2017] EWHC 972 (Fam).
[3] Ibid, [11].
[4] Ibid, [40] citing Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67.
[5] In the Matter of Charles Gard [2017] EWCA Civ 410 (Lord Justice McFarlane; Lady Hale; Lord Justice Sales).
[6] Ibid, [113].
[7] Ibid, [82].
[8] Lady Hale; Lord Kerr; Lord Wilson. The decision was not reported but is summarised in the Court’s website at <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html>.
[9] ‘The Grim Lessons of Charlie Gard’, The American Interest (online), 26 July 2017, <https://www.the-american-interest.com/2017/07/25/grim-lessons-charlie-gard/>.
[10] ‘Charlie Gard Exposes the Horror of Socialized Medicine’, Trigger Warning Radio (online), <https://www.spreaker.com/user/triggerwarningblog/charlie-gard-exposes-horror>.
[11] ‘Nigel Farage: “I Am Disgusted” Charlie Gard Was Blocked from US Treatment’, Fox News Insider, 25 July 2017, <http://insider.foxnews.com/2017/07/25/charlie-gard-britain-baby-court-experimental-treatment-nigel-farage> .
[13] Article 8 – Right to respect for private and family life: 1. Everyone has the right to respect for his private and family life, his home and his correspondence. 2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.
[14] Referred to in Lady Hale’s explanation for the decision of the Supreme Court: <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html>.
[15] The decision was unreported but can be found on the Supreme Court website at: <https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf>.
[16] Ibid, [15].
[17] ECHR 222 (2017) – Inadmissibility decision.
[18] [2012] NSWSC 1609 (24 December 2012).
[19] Ibid, [89]-[90].
[20] [2016] FCWA 19; [2016] FCWA 34; and [2016] FCWA 75.
[21] [2016] FCWA 19 at [38].
[22] Ibid, [39].
[23] [2016] FCWA 34 at [68].
[24] [2016] FCWA 75 at [90].
[25] Ibid, [99].
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URL: http://www.austlii.edu.au/au/journals/PrecedentAULA/2018/21.html