Life and death decisions

It’s been an exceptional few months and, as a public lawyer, I’ve no doubt that it’s tough to keep up with the galloping pace of the news and decisions that have soared across our screens: the outcome of the snap election; the disastrous Grenfell Tower fire and the Sir Martin Moore-Bick inquiry; the long-campaigned-for blood contamination inquiry; the about-turn decision to prosecute six of those involved in Hillsborough; the ongoing saga concerning little Charlie Gard; and the Supreme Court’s decision in the long-running abortion debate in Northern Ireland, to name but a few.

As I start my tenure writing for Solicitors Journal, it’s certainly going to be an interesting time ahead. This quarter, I will hone in on the latter two matters, focusing on the court’s jurisdiction and bearing on fundamental decisions concerning life and death. So first to Charlie Gard who, as I write, still continues to be treated and continues to be the subject of legal proceedings while his parents draw together potentially new medical evidence that may affect the heavily appealed decision as to whether his life-sustaining treatment should be withdrawn.

To recap, Charlie, who is less than a year old, suffers from a very rare inherited mitochondrial DNA depletion syndrome, meaning his brain, muscles, and breathing are severely affected. He is artificially ventilated. He has congenital deafness, a severe epilepsy disorder, and his heart, liver, and kidneys are also affected.

In March 2017, Great Ormond Street Hospital for Children NHS Foundation Trust applied to the High Court, pursuant to its inherent jurisdiction, to request that the court make orders that it was lawful and in Charlie’s best interests to withdraw artificial ventilation, to provide him with palliative care only, and to not undergo nucleoside therapy in the US, provided that the measures and treatment adopted were the most compatible with maintaining Charlie’s dignity.

Best interests

The test for the court to apply, as outlined in An NHS Trust v MB (A Child represented by CAFCASS as guardian ad litem) [2006] 2 FLR 319, is an objective test of assessing what is in the child’s best interests; the definition of ‘best interests’ is as wide as possible, taking into account everything from medical evidence to emotional and sensory factors. There is a strong presumption in favour of taking action that will prolong life but that presumption is not irrebuttable.

Although this, like other similar cases, requires a determination of an order for withdrawal of treatment, Mr Justice Francis was mindful to remind himself of one of the fundamental questions in these cases, namely that the court does not consider whether it is in the patient’s best interests to die but it must consider whether it is in the best interests of the patient that their life is prolonged by the continuance of treatment. If the treatment is not in the patient’s best interest, then the court cannot give its consent for it to be given and it follows that will be lawful to order withdrawal (Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, citing the well-known case of Airedale NHS Trust v Bland [1993] AC 789).

After considering the medical evidence and the nucleoside treatment, Francis J ruled that he could not say that there was available treatment with ‘potential materially to improve Charlie’s quality of life’. It was agreed by all (even the US expert willing to provide the treatment) that the prospect of the nucleoside treatment having any benefit was close to zero. It was futile and not in Charlie’s best interests to receive it. And so, as the consensus was that the current life he was living was not of a quality that was worth saving without hope of improvement, it followed that it must be lawful and in his best interests for artificial ventilation to be withdrawn and palliative care instituted.

Each appellate court and the European Court of Human Rights agreed with Francis J’s decision. However, the matter does not end there. As I write, the parents are to have one last shot, by providing apparently new evidence that treatment in the US could improve Charlie’s life by 11 to 56 per cent. The question on my mind is: what percentage do you attach to improving a child’s life? Fifty-six per cent is surely enough (being greater than the balance of probabilities) but is 11 per cent? Wouldn’t we all want someone to try to improve our lives, even if just by 11 per cent? No doubt by the time this is published, we will have the answer.

Abortion debate

Secondly, I turn to the Supreme Court’s decision in R (on the application of A and B) v Secretary of State for Health [2017] UKSC 41, handed down on 14 June 2017. The appellants both resided in Northern Ireland: A, a 15-year-old girl who became pregnant and wanted an abortion, and B, her mother, who supported the termination. They submitted that the secretary of state’s failure to provide free-of-charge abortions under the NHS in England for residents of Northern Ireland was unlawful in public law and breached article 14 of the European Convention on Human Rights, read in conjunction with article 8.

The public law challenge alleged that the respondent had failed to exercise a power that would allow all women, including those normally resident in Northern Ireland but present in England (for the purposes of an abortion), to be provided with abortion services free of charge. It was argued that not only was his decision irrational, taking account of an irrelevant consideration, but his power to make a direction in fact became a duty to do so. The human rights case was a complicated one but essentially came down to the argument that the right enshrined in article 8 could not be secured because the secretary of state’s decision discriminated against Northern Irish women on the grounds of ‘other status’, namely their ‘usual residence’ in a country that does not offer abortions.

The Supreme Court was given an opportunity to rectify a long-standing inequality between women who carry unwanted pregnancies in Northern Ireland and the rest of the UK. Lord Wilson, Lord Reed, and Lord Hughes, with strong dissenting opinions from Lord Kerr and Lady Hale, declined to rectify the imbalance. With one eye on health tourism and the other on the separation of powers and due deference to the Northern Irish legislature, the majority held that the secretary of state’s decision was lawful and rational.

The legislation stated that the healthcare service was designed to secure improvement in the health of ‘people of England’ and the majority decided that that duty only extends to people who live in England. They found that the secretary of state was entitled to decide in accordance with local decision making where parliament had intended for each country to provide its own free health services to its residents. The majority found that the democratic decision of the Northern Irish people not to provide abortion services free of charge in situations outside of the narrow circumstances permitted should be respected. They concluded that the human rights breaches were justified, considering that the secretary of state had struck a fair balance between the rights of the women and the interests of the UK as a whole.

On the one hand, the court must be careful not to intervene in the democratic will of the people in devolved matters and discourage putting any further burdens on our already-groaning NHS. On the other, in their dissenting opinions, both Lord Kerr and Lady Hale picked up on the complexity of defining too narrowly the phrase ‘people of England’ when determining to whom the secretary of state’s duty lay and the legislative purpose for which these health services were to be provided.

Lord Kerr put paid to Lord Wilson’s argument regarding due defence to the legislature, explaining that while respect was key, it was important to determine to what you were showing respect. The Northern Ireland Assembly had never decided upon the ability of Northern Irish women to travel from their home to England to undergo abortions. It had only decided upon the carrying out of abortions in its own country. As Lord Kerr stated, showing respect ‘did not extend to denying Northern Irish women the means of obtaining abortions’.

In my view, the narrow focus of this case appears to have been lost in the wider controversial debate about abortion that continues in Northern Ireland. The appellants were not suggesting that the secretary of state’s decision should interfere with the laws of Northern Ireland or deny its people their religious beliefs, or forget the separation of powers doctrine. They were asking the court to consider the equality of the position of a British woman who happens to live in Northern Ireland and a British woman who happens to live in England when both are accessing the National Health Service to make the same life-altering decision. Alas, the debate will continue and I’ve no doubt this is not the last time we will see it played out in our highest courts.

Samantha Jones is a barrister at 7BR

@7BedfordRow www.7br.co.uk