Alternative treatment for seriously ill child not in his best interests

7 June 2017 by

Yates and Anor v Great Ormond Street for Children [2017] EWCA Civ 410, 23 May 2017 – read judgment

On Thursday 8 June the Supreme Court will be asked to grant permission to appeal in this case of a seriously ill 9 month old child whose parents wish to take him to the USA for experimental treatment that may slow his deterioration.

The human issues are all over the press – this post will concentrate on the legal arguments in the Courts below, including the very recently published judgment of the Court of Appeal.

Perhaps the most interesting question in this case is not the statutory or human rights background, but the issue of jurisdiction. The court has as part of its inherent jurisdiction to rule on the child’s fate on the basis of his best interests. The appellants were arguing that this was not the test; that the question at the core of the consideration was that of “serious harm”. The parents argue that

the hospital’s application to prevent the delivery of a therapy which it did not, itself, intend to provide, was outside its powers as a public authority, and the court had no jurisdiction to uphold the hospital’s position.

Legal and Factual Background

Charlie Gard is a nine month old baby in intensive care. He suffers from a rare mitochondrial disease which has caused life threatening brain damage. The mutation causes the deterioration and death of fuel-giving mitochondrial cells in every part of the patient’s body, depriving him of the essential energy for living. He is not able to breathe without a ventilator. The condition has also affected his main organs and he is unable to move. Brain scans show no sign of a sleep-wake cycle, a sign of severe brain atrophy.  Although the parents accept that in his current circumstances his quality of life is not sustaining, they have raised funds for treatment in the United States known as “nucleoside therapy”. This is a treatment that has not been clinically trialled or proven in animal tests, but which purports to replace the energy-supplying function of the mitochondrial cells through a form of nutrition. It has achieved a positive outcome for some patients with a different form of the disease than that suffered by Charlie Gard.

In the High Court doctors representing his care team argued that this therapy was not a viable option and therefore would not be in the baby’s best interests. The judge agreed and ordered withdrawal of all treatment except for palliative care.

Before the Court of Appeal, the parents argued that the judge had erred by relying on the “best interests” test alone. They put forward a novel argument based on the case of King (A Child), Re [2014] EWHC 2964 (Fam). This was the “Proton therapy” case which received much media attention when the parents, against a court order, took their child to Spain to receive a specialist form of radiation treatment for cancer. They were pursued by the authorities and arrested. However, having later raised funds to take him for treatment in Prague, there was no more opposition to their actions (the treatment they were seeking was available in the UK, but it was very expensive).

The appellants in this case relied on King to argue that intervention to prevent a parent from pursuing a positive treatment plan for their child should only be permissible where the court was satisfied that the treatment was likely to cause the child “significant harm”. Furthermore, they maintained that the hospital’s application to prevent the delivery of a therapy which it did not, itself, intend to provide, was outside its powers as a public authority, and the court had no jurisdiction to uphold the hospital’s position.

It was also argued on behalf of the parents that the withdrawal of life-sustaining treatment would involve a “massive” impact on their rights to private and family life under Article 8. This right, it was submitted, was at the core of this case, and nothing short of “significant harm” should override the parents’ legitimate choice of treatment.

The Court of Appeal dismissed the parents’ appeal.

Reasoning behind the Court’s decision

This case could be distinguished from King. There, the parents had objected to a proposed course of treatment on the basis that they had a preferred alternative whose efficacy was established. The court was therefore acting within its powers to allow the parents to make their choice. The instant case was different in that the evidence before the court showed that taking the child to the US for nucleoside therapy would provide no benefit and do nothing other than extend his suffering. “Significant harm” does not import a threshold to decisions concerning the medical treatment for children. It is a concept within the criteria of the Children Act 1989 and to the need to establish belief in the likelihood of significant harm before a local authority may bring an application under that jurisdiction. A court can only order that a child be placed in care if it is suffering, or likely to suffer significant harm at the hands of its parents or harm beyond parental control (Section 100). There was no statutory requirement for a hospital to go through the s.100 “hoop”. The sole principle was still the “best interests of the child”.

The court’s task was to determine the child’s best interests without evaluating the reasonableness of the parents’ case, and without introducing any other factor or filter. It had to evaluate the detail of each treatment option from the child’s perspective. A child’s best interests included an expectation that decisions about the length and quality of their life would be taken by the parent entrusted with their care. However, it was ultimately the judge who had to choose the best course.

Nor had the hospital acted outside its powers in bringing an application for a declaration as to its proposed treatment plan. The wider issue of the US therapy had been raised by the parents, not by the hospital. There was no question of the hospital having forced its opinion on the parents and having thereafter sought the sanction of the court. The judge’s order resulted from a child-focused, court-led evaluation of the baby’s best interests. The fact that the merits of the US therapy represented a large part of the evaluation demonstrated that the judge had regarded the parents’ views as an important part of the process.

As to the human rights arguments, McFarlane LJ observed  that the order under challenge resulted from a

100 per cent, child focused, court-led evaluation where the one issue was whether or not the therapy was in the child’s best interests. The fact that as part of that evaluation the court’s evidential focus was largely on the merits of nucleoside therapy, notwithstanding the very clear views of the hospital and the limited benefit Dr I himself was able to identify, demonstrates that the judge regarded the views of Charlie’s parents as an important part of the process upon which he was engaged.

It followed that McFarlane LJ did not consider that the appeals, supported as they were by the human rights arguments, had established any basis for overturning the judge’s decision.

Comment

In the context, the outcome of this appeal and the one to come before the Supreme Court tomorrow is foreseeable. But the question at its core is at what point the law should enter the child/patient relationship. It rightly stays its hand before the foetus is viable. But after that it is at least arguable that more weight should be given to the interests of the parents, particularly where the alternative treatment is viable, even if not available in the UK.

It does not take great creativity to imagine a case where, for example, somatic gene therapy happens to be available in the United States or some other jurisdiction with comparable clinical and ethic standards to this country, which is not available here, and the parents effectively face a court injunction which imposes the clinical view of the domestic medical authorities on the family. In such a case the court’s inherent jurisdiction to consider where the best interests of a child lies might become a more contentious issue.

 

4 comments


  1. finolamoss says:

    Remember Ashya King the little boy who escaped abroad and had foreign cancer treatment with no risk of brain injury and is now fine ?

    https://en.wikipedia.org/wiki/Ashya_King_case

    Soon our NHS, will be mainly privatised and there will be no choice, maximum profit treatment and, it appears that treatment can be enforced on children via care orders, against parents wishes, on the grounds of expert opinion of experts effectively or directly employed by the NHS company that profits from this service.

    And, if a patient suffers from a mental disorder, they can and are, being deemed ‘incapable’ of consenting to medical treatment and including medication, and this can then be enforced.

    Effectively, most mental services on NHS are now being privatised and services enforced by our courts with no competition or alternatives.

    Is this in our best interests ?

  2. The only person that cares for this child are its parents.
    The parents have found the money (privately) to provide treatment for the child in the US
    This costs the UK government nothing
    Therefore, regardless of the predictive account which, however small, no one actually knows, the parents should be permitted to take the child to the US for treatment
    There is no reason why the judge should rule against the parents except to support the Establishment – in this case clinicians at Great Ormond Street.
    Ultimately, whatever happens to the child, the only people that will suffer grief are the parents, not the judge, not the doctors.
    It is wrong for the state to interfere in this case. However it is understandable for should the treatment in the US actually provide a benefit, this will be an extreme embarrassment for the NHS. Is this what this ruling is really about?

  3. JM says:

    another disgusting case…nobody has got any right to dictate what they can and can not do to anybody else….and it is technically ‘people’ that are doing this, not non physical entities…..regardless the delay has effectively meant they got their own way anyway….

    just one of many reasons why i will no longer even try and deal with these *******

  4. It is not the court or NHS or any other to decide. The owner of the baby is the rightful and lawful decison maker. Whatever the mother in particular decides that is upto her.
    All these diseases have been manufactured for research. There are many US Patents too granted. Those who understand the body will agree that it is curable. The fact that the expenditure will be paid to US instead of the UK Pharma is the seed of the debate.
    Freedom to the parents to choose as they wish.

Comments are closed.

Welcome to the UKHRB


This blog is run by 1 Crown Office Row barristers' chambers. Subscribe for free updates here. The blog's editorial team is:
Commissioning Editor: Jonathan Metzer
Editorial Team: Rosalind English
Angus McCullough QC David Hart QC
Martin Downs
Jim Duffy

Free email updates


Enter your email address to subscribe to this blog for free and receive weekly notifications of new posts by email.

Subscribe

Categories


Tags


7/7 Bombings 9/11 A1P1 Aarhus Abortion Abu Qatada Abuse Access to justice adoption AI air pollution air travel ALBA Allergy Al Qaeda Amnesty International animal rights Animals anonymity Article 1 Protocol 1 Article 2 article 3 Article 4 article 5 Article 6 Article 8 Article 9 article 10 Article 11 article 13 Article 14 article 263 TFEU Artificial Intelligence Asbestos Assange assisted suicide asylum asylum seekers Australia autism badgers benefits Bill of Rights biotechnology birds directive blogging Bloody Sunday brexit Bribery British Waterways Board Catholic Church Catholicism Chagos Islanders Charter of Fundamental Rights child protection Children children's rights China christianity circumcision citizenship civil liberties campaigners civil partnerships climate change clinical negligence closed material procedure Coercion Cologne Commission on a Bill of Rights common buzzard common law communications competition confidentiality confiscation order conscientious objection consent conservation constitution contact order contempt of court Control orders Copyright coronavirus costs costs budgets Court of Protection crime criminal law Criminal Legal Aid criminal records Cybersecurity Damages data protection death penalty declaration of incompatibility defamation deficit DEFRA Democracy village Dennis Gill dentist's registration fees deportation deprivation of liberty derogations Detention devolution Dignitas dignity Dignity in Dying diplomacy director of public prosecutions disability Disability-related harassment disabled claimants disciplinary hearing disclosure Discrimination Discrimination law disease divorce DNA doctors does it matter? domestic violence Dominic Grieve don't ask don't ask don't tell don't tell Doogan and Wood double conviction DPP guidelines drones duty of care ECHR economic and social rights economic loss ECtHR Education election Employment Environment environmental information Equality Act Equality Act 2010 ethics Ethiopia EU EU Charter of Fundamental Rights EU costs EU law European Convention on Human Rights European Court of Human Rights European Court of Justice european disability forum European Sanctions Blog Eurozone euthanasia evidence Exclusion extra-jurisdictional reach of ECHR extra-territoriality extradition extradition act extradition procedures extradition review extraordinary rendition Facebook Facebook contempt facial recognition fair procedures Fair Trial faith courts fake news Family family courts family law family legal aid Family life fatal accidents act Fertility fertility treatment FGM fisheries fishing rights foreign criminals foreign office foreign policy France freedom of assembly Freedom of Association Freedom of Expression freedom of information Freedom of Information Act 2000 freedom of movement freedom of speech free speech game birds gangbo gang injunctions Garry Mann gary dobson Gary McFarlane gay discrimination Gay marriage gay rights gay soldiers Gaza Gaza conflict Gender General Dental Council General Election General Medical Council genetic discrimination genetic engineering genetic information genetics genetic testing Google government Grenfell grooming Gun Control gwyneth paltrow gypsies habitats habitats protection Halsbury's Law Exchange hammerton v uk happy new year harassment Hardeep Singh Haringey Council Harkins and Edwards Health healthcare health insurance Heathrow heist heightened scrutiny Henry VII Henry VIII herd immunity hereditary disorder High Court of Justiciary Hirst v UK HIV HJ Iran HM (Iraq) v The Secretary of state for the home department [2010] EWCA Civ 1322 Holder holkham beach holocaust homelessness Home Office Home Office v Tariq homeopathy hooding Hounslow v Powell House of Commons Housing housing benefits Howard League for Penal Reform how judges decide cases hra damages claim Hrant Dink HRLA HS2 hs2 challenge hts http://ukhumanrightsblog.com/2011/04/11/us-state-department-reports-on-uk-human-rights/ Human Fertilisation and Embryology Act Human Fertilisation and Embryology Authority human genome human rights Human Rights Act Human Rights Act 1998 human rights advocacy Human rights and the UK constitution human rights commission human rights conventions human rights damages Human Rights Day human rights decisions Human Rights Information Project human rights news Human Rights Watch human right to education human trafficking hunting Huntington's Disease HXA hyper injunctions Igor Sutyagin illegality defence immigration Immigration/Extradition Immigration Act 2014 immigration appeals immigration detention immigration judge immigration rules immunity increase of sanction India Indonesia Infrastructure Planning Committee inherent jurisdiction inherited disease Inhuman and degrading treatment injunction Inquest Inquests insult insurance insurmountable obstacles intelligence services act intercept evidence interception interests of the child interim remedies international international conflict international criminal court international humanitarian law international human rights international human rights law international law international treaty obligations internet internet service providers internment internship inuit investigation investigative duty in vitro fertilisation Iran iranian bank sanctions Iranian nuclear program Iraq Iraqi asylum seeker Iraq War Ireland irrationality islam Israel Italy iTunes IVF ivory ban jackson reforms Janowiec and Others v Russia ( Japan Jason Smith Jeet Singh Jefferies Jeremy Corbyn jeremy hunt job Jogee John Hemming John Terry joint enterprise joint tenancy Jon Guant Joseph v Spiller journalism judaism judges Judges and Juries judging Judicial activism judicial brevity judicial deference judicial review Judicial Review reform judiciary Julian Assange jurisdiction jury trial JUSTICE Justice and Security Act Justice and Security Bill Justice and Security Green Paper Justice Human Rights Awards JUSTICE Human Rights Awards 2010 justification just satisfaction Katyn Massacre Kay v Lambeth Kay v UK Ken Clarke Ken Pease Kerry McCarthy Kettling Kings College Klimas koran burning Labour Lady Hale lansley NHS reforms LASPO Law Commission Law Pod UK Law Society Law Society of Scotland leave to enter leave to remain legal aid legal aid cuts Legal Aid desert Legal Aid Reforms legal blogs Legal Certainty legal naughty step Legal Ombudsman legal representation legitimate expectation let as a dwelling Leveson Inquiry Levi Bellfield lewisham hospital closure lgbtq liability Libel libel reform Liberal Democrat Conference Liberty libraries closure library closures Libya licence conditions licence to shoot life insurance life sentence life support limestone pavements limitation lisbon treaty Lithuania Litigation litvinenko live exports local authorities locked in syndrome london borough of merton London Legal Walk London Probation Trust Lord Bingham Lord Bingham of Cornhill Lord Blair Lord Goldsmith lord irvine Lord Judge speech Lord Kerr Lord Lester Lord Neuberger Lord Phillips Lord Rodger Lord Sumption Lord Taylor LSC tender luftur rahman machine learning MAGA Magna Carta mail on sunday Majority Verdict Malcolm Kennedy malice Margaret Thatcher Margin of Appreciation margin of discretion Maria Gallastegui marriage material support maternity pay Matthew Woods Mattu v The University Hospitals of Coventry and Warwickshire NHS Trust [2011] EWHC 2068 (QB) Maya the Cat Mba v London Borough Of Merton McKenzie friend Media and Censorship Medical medical liability medical negligence medical qualifications medical records medicine mental capacity Mental Capacity Act Mental Capacity Act 2005 Mental Health mental health act mental health advocacy mental health awareness Mental Health Courts Mental illness merits review MGN v UK michael gove Midwives migrant crisis Milly Dowler Ministerial Code Ministry of Justice Ministry of Justice cuts misfeasance in public office modern slavery morality morocco mortuaries motherhood Motor Neurone disease Moulton Mousa MP expenses Mr Gul Mr Justice Eady MS (Palestinian Territories) (FC) (Appellant) v Secretary of State for the Home Department murder murder reform Musician's Union Muslim NADA v. SWITZERLAND - 10593/08 - HEJUD [2012] ECHR 1691 naked rambler Naomi Campbell nationality National Pro Bono Week national security Natural England nature conservation naturism Nazi negligence Neuberger neuroscience Newcastle university news News of the World new Supreme Court President NHS NHS Risk Register Nick Clegg Nicklinson Niqaab Noise Regulations 2005 Northern Ireland nuclear challenges nuisance nursing nursing home Obituary Occupy London offensive jokes Offensive Speech offensive t shirt oil spill olympics open justice oppress OPQ v BJM orchestra Osama Bin Laden Oxford University paramountcy principle parental rights parenthood parking spaces parliamentary expenses parliamentary expenses scandal Parliamentary sovereignty Parliament square parole board passive smoking pastor Terry Jones patents Pathway Students Patrick Quinn murder Pensions persecution personal data Personal Injury personality rights perversity Peter and Hazelmary Bull PF and EF v UK Phil Woolas phone hacking phone taps physical and mental disabilities physician assisted death Pinnock Piracy Plagiarism planning planning human rights planning system plebgate POCA podcast points Poland Police police investigations police liability police misconduct police powers police surveillance Policy Exchange report political judges Politics Politics/Public Order poor reporting Pope Pope's visit Pope Benedict portal possession proceedings power of attorney PoW letters to ministers pre-nup pre-nuptial Pre-trial detention predator control pregnancy press press briefing press freedom Prince Charles prince of wales princess caroline of monaco principle of subsidiarity prior restraint prison Prisoners prisoners rights prisoners voting prisoner vote prisoner votes prisoner voting prison numbers Prisons prison vote privacy privacy injunction privacy law through the front door Private life private nuisance private use proceeds of crime Professional Discipline Property proportionality prosecution Protection of Freedoms Act Protection of Freedoms Bill Protest protest camp protest rights Protocol 15 psychiatric hospitals Public/Private public access publication public authorities Public Bodies Bill public inquiries public interest public interest environmental litigation public interest immunity Public Order Public Sector Equality Duty putting the past behind quango quantum quarantine Queen's Speech queer in the 21st century R (on the application of) v Secretary of State for the Home Department & Ors [2011] EWCA Civ 895 R (on the application of) v The General Medical Council [2013] EWHC 2839 (Admin) R (on the application of EH) v Secretary of State for the Home Department [2012] EWHC 2569 (Admin) R (on the application of G) v The Governors of X School Rabone and another v Pennine Care NHS Foundation Trust [2012] UKSC 2 race relations Rachel Corrie Radmacher Raed Salah Mahajna Raed Saleh Ramsgate raptors rehabilitation Reith Lectures Religion resuscitation RightsInfo right to die right to family life right to life Right to Privacy right to swim riots Roma Romania Round Up Royals Russia saudi arabia Scotland secrecy secret justice Secret trials security services sexual offence Sikhism Smoking social media social workers South Africa south african constitution Spain special advocates spending cuts Standing starvation statelessness stem cells stop and search Strasbourg super injunctions Supreme Court Supreme Court of Canada surrogacy surveillance swine flu Syria Tax Taxi technology Terrorism terrorism act tort Torture travel treason treaty accession trial by jury TTIP Turkey Twitter UK Ukraine unfair consultation universal jurisdiction unlawful detention USA US Supreme Court vaccination vicarious liability Wales War Crimes Wars Welfare Western Sahara Whistleblowing Wikileaks wildlife wind farms WomenInLaw Worboys wrongful birth YearInReview Zimbabwe

Disclaimer


This blog is maintained for information purposes only. It is not intended to be a source of legal advice and must not be relied upon as such. Blog posts reflect the views and opinions of their individual authors, not of chambers as a whole.

Our privacy policy can be found on our ‘subscribe’ page or by clicking here.

%d bloggers like this: