Alfie Evans: the legal perspective

May 30, 2018

Written By Becky Kells, Editor, AllAboutLaw

Over the past few months, the case surrounding a severely unwell child became the centre of an international debate which spanned ethics, law and the decision-making rights of parents. The parents of Alfie Evans clashed repeatedly with Alder Hey Hospital, Liverpool, over the decision to end life support and begin palliative care. With Alfie’s parents and the hospital unable to agree, the case was taken to the High Court.

Alfie had an incurable brain condition which doctors could not identify or cure. Much of his brain had deteriorated over the course of his life, to the point where they believed he could not sense what was going on around him, leading doctors at Alder Hey to make the decision to withdraw his life support. He died at 23 months old, having spent over a year in the hospital.

The case raises many questions, ranging from the efficacy of the law in cases such as this, to the role of the public voice when a case acquires international renown the way Alfie’s did.

Alder Hey made the decision to withdraw Alfie’s life support as the doctors treating him did not feel it was in Alfie’s best interests to continue with it. Following this, an Italian hospital with close ties to the Vatican – Bambino Gesu Hospital – said that it would be willing to accommodate Alife. The treatment would be a continuation of life support, rather than a cure.

It was at this point that Alfie’s parents and Alder Hey Children’s Hospital clashed, and the hospital went to the High Court in Liverpool to acquire a declaration that it was “not in Alfie’s best interests” to continue treatment – blocking the proposal to release him to the hospital in Rome.

Various legal battles have been ongoing since 19 December. On 20 February, Mr Justice Hayden of the High Court ruled that Alfie’s life support could be withdrawn, stating that the child needed “peace, quiet and privacy”. Following this decision, Tom Evans and Kate Jones launched their own legal challenge, believing that their son was “improving”, describing how he moved when touched and opened his eyes – movements which they argued indicated responsiveness and cognitive function.

On 6 March, the case was taken to the Court of Appeal by Alfie’s parents, and when the outcome was not in their favour, they took the case to the Supreme Court on 20 March, and the European Court of Human Rights (ECHR) – on both occasions, the respective courts ruled with the original decision made by Mr Justice Hayden. On 11 April, a date was set to remove life support, and to change Alfie’s treatment to end of life care.

The Christian Legal Centre (CLC) represented Alfie’s parents from this point onwards, but a claim that the child was “unlawfully detained” was rejected by both the Court of Appeal and the Supreme Court. The CLC also drew direct criticism from Mr Justice Hayden, after it emerged that a student affiliated with the group advised the couple to seek a private prosecution against doctors at the hospital – allegedly for murder.

The legal process has given rise to a key debate – should it be parents who decide on what is in the best interests of minors, or the law?

The law

Currently, the 1989 Children’s Act gives parents, for the most part, the right to determine what happens to their children. This includes making decisions about medical treatment where the child cannot consent. However, the Act does also indicate that, if a child is at risk of harm, the state can and should intervene. This gave Alder Hey the basis on which to go to the High Court in order to override Alfie’s parents’ wishes.

While the final say always comes from the court – with neither parents nor doctors being automatically considered “right” – the court must make its decision with the interests of the child as a priority.

Some do not agree that the court should have this level of deciding power when it comes to parental relationships. Connie Yates – who lost her son, Charlie Gard, nine months prior to Alfie’s death, said: “We will not rest until we have a better law. We all need to stand together.”

Her words refer to a campaign for clearer legislation around decision-making when it comes to severely ill or disabled children:

“Since Charlie’s passing in July last year, we have been working with paediatric consultants, medical ethicists, senior lawyers, U.K. politicians and other parents who have suffered through similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals. This involves addressing problems around the “best interests” test as well as creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts. Once cases are public it is difficult for people to be fully aware of the complexities and this often leads to ill-informed judgments on both sides and creates unnecessary conflicts.

“We have something that is better for everybody – hospitals, healthcare professionals, families with sick children, the NHS, and the reputation of our own government. We would ask those pushing for law change to take account of the careful work already done, and join us as we continue to push for a solution that is best for all involved.”

Meanwhile, another campaign for a new law – this one called “Alfie’s Law” – has sprung up, headed by Steven Woolfe, an MEP for North West England. It makes the argument that moral rights should entitle parents more control over what happens to sick children.

Writing for the Independent, Woolfe called for an impartial advocate to act on behalf of the parents, commensurate legal funding in future cases like Alfie’s, and the right to a second opinion from a medical practitioner outside of the NHS.

The public

The case has been widely commentated on by people who supported Alfie’s parents in their wish to prolong their son’s life. This led to several Facebook campaigns, under the title “Alfie’s Army”, which showed solidarity with the parents and child. This campaign acquired global precedence, with Evans and Jones providing regular updates.

The support gained a real-life traction when it emerged that supporters of “Alfie’s Army” were visiting the hospital to protest, and even harassing parents and children attending appointments there. The couple eventually apologised on behalf of protestors, and a police investigation was launched into the behaviour of certain members of “Alfie’s Army”.

https://edition.cnn.com/2018/04/29/opinions/alfie-evans-opinion-snead/index.html

Reflecting on the case after Alfie’s death, O Carter Snead wrote that the decision “Reflects a profound, indeed lethal intolerance of dependence and disability” – expanding the web of debate even further, incorporating disability and quality of life.

Meanwhile, a lot of commentators spoke out in favour of Alder Hey and the courts, defending the NHS and expressed concern at the lengths to which some individuals involved in "Alfie's Army" felt compelled to go – proposing activating fire alarms at Alder Hey while some children were undergoing surgery, for example.

“The doctors looking after him will have agonised over the decision to withdraw life-sustaining treatment. It will have kept them up at night, and they will have drawn on all their expertise and experience to offer Alfie any hope of recovery he has” said Samantha Batt-Rowden, an intensive care doctor who also had a critically ill child

Batt-Rowden further criticised religious organisations, politicians and celebrities for “Capitalising on a family’s grief” and “preying on parents at their most vulnerable”.

The Secret Barrister called the court’s decision to reject appeals made by Alfie’s parents “a decision made entirely on an assessment of Alfie’s best interests… “solely what is medically best for a very sick child”. Citing court documents from the case, the anonymous barrister criticised misinformed perspectives – largely from those outside of the UK – that claimed that “socialised medicine”, or the government, played a role in the decision.

What needs to change?

The levels of anguish reached in the Alfie Evans case touched all levels of the groups involved. It goes without saying that Alfie’s family were primarily affected, but also the staff within Alder Hey – some of whom were targeted personally – and the children being treated at Alder Hey who witnessed protests that at times threatened to impede their own treatment. Taking a side in such a complex and emotional case, as an outsider, is a difficult feat to manage – but it is clear that some changes need to be made.

Some would argue that the law needs to change – as exemplified by the campaigners behind Charlie’s Law and Alfie’s Law – to give parents more concrete rights when it comes to care decisions.

Other proposed changes include a mediation service to assist when medical professionals and parents do not agree on the best course of care – a measure which may prevent disagreements from becoming so public and unregulated. Strengthened ethics support teams in hospitals have also been suggested.

For now, Alfie’s case – and the widespread debates about ethics, British law and decision-making it generated – will remain fresh in the memories of many.

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