The recent case of R (on the application of Conway) v Secretary of State for Justice (Humanists UK and others intervening) [2017] EWHC 2447, [2017] All ER (D) 22 (Oct) concerns a man suffering from motor neurone disease.

Mr Conway wants the option to end his life when he considers it is no longer worth living. He brought an application seeking a declaration of incompatibility in respect of s 2 of the Suicide Act 1961 (SA 1961), arguing that section is a disproportionate interference with his right to private life under Art 8 of the European Convention on Human Rights. The claimant proposed that any lawful scheme would involve safeguards such as a prognosis that the person has less than six months to live and the involvement of a High Court judge to confirm that any statutory criteria were met.

This is the most recent in a line of cases considering the relationship between Art 8 and assisted suicide or euthanasia (the difference being that the latter involves active steps to end life by a third party, usually a doctor, while the former does not). Earlier cases include Pretty [2001] UKHL 61 and (2002) 35 EHRR 1, Purdy [2009] UKHL 54 and Nicklinson [2014] UKSC 38. The European Court has considered similar cases from other countries. However, the court noted that at present only five of the 47 member states of the Council of Europe permit any form of assisted suicide.

Charlie Gard has a rare genetic mitochondrial illness affecting in particular his brain, muscles, and ability to breathe. In October 2016, within two months of being born, he was admitted to Great Ormond Street Hospital experiencing lethargy and shallow breathing.

In December 2016, Charlie’s mother heard about a new treatment being administered to a child at a reputable medical centre in the US. Great Ormond Street contacted the US team and was told there was no direct evidence about the efficacy of this treatment for someone with Charlie’s condition but ‘theoretical and anecdotal evidence’ that it might help.

In January 2017, an application was made to the ethics committee for the treatment to be trialled in the UK. However, during January a very serious deterioration of Charlie’s condition led doctors to conclude that further treatment would be futile, only prolonging Charlie’s suffering.

Sir Mark Hedley has given an impressively short judgment approving an unusual settlement of a claim for damages under the Human Rights Act 1998.  The claim was brought by CH, a 38-year-old man with Downs Syndrome and an associated learning difficulty.  CH married WH in 2010 and they lived together in his parent’s home, enjoying normal ‘conjugal’ relations like any other married couple.  In 2014, the couple sought fertility treatment, which led to a query as to whether CH had the mental capacity to consent to sexual relations at all.  He was assessed by a consultant psychologist, who considered that CH did not have such capacity, but needed a course of sex education to help him achieve it.

The generally under-regarded section 1(3) of the Mental Capacity Act 2005 provides that a person is not to be regarded as lacking capacity to make a decision ‘unless all practicable steps to help him to do so have been taken without success.’  In CH’s case, the practical assistance he needed was clearly defined: a course of sex education.  This was duly requested, but not provided.  Instead, the local authority wrote to the couple in March 2015 saying that WH could no longer have sex with her husband because this would be a serious criminal offence.  WH understood that if she flouted this, the couple would be separated.  She therefore moved into a separate bedroom, and ‘significantly reduced any physical expressions of affection’ so as not to lead CH on.  As Sir Mark Hedley commented: ‘the impact of all this on CH is not difficult to imagine.’

The worldwide number of people living with dementia in 2015 was estimated at 47 million. By 2030, that figure will reach more than 75 million, and by 2050, more than 135 million.1 The latter is equivalent to the combined populations of the UK and France with one new case being diagnosed every 3.2 seconds.2

This demographic time bomb has well- documented socio-economic consequences. It is also of critical importance for the international legal community and in particular those advising on wills, probate and trust affairs.

Between 2013 and 2014, the number of claims reaching the High Court in England and Wales involving a contested will rose by more than 80 per cent – and those claims represent only the tip of the iceberg, which looks set to increase in size as a result of several factors:

  • Increase in property values: The enthusiasm for a challenge to testamentary disposition is directly affected by the amount in issue. A claim is not worth bringing unless the potential rewards justify the expense of litigation. Property prices have enjoyed unprecedented growth in recent years, and the values need not be very high in order to justify mounting a challenge.
  • Interest rates: Historically low rates of interest since 2008 have also allowed older and more cautious homeowners to pay off substantial amounts of mortgage debt rather than borrow big and upscale. This means that parties have a share of the unencumbered property in their sights when assessing the merits of a claim.
  • Taxation: Changes in domestic taxation laws – for example, inheritance tax and the laws governing pensions – will also have an impact on the size of the estate.

  • Blended families: As we live longer, there is an increased potential for people to tire of one life partner and form a new relationship, complete with stepchildren or adopted children, as well as those born to the relationship. As the number of potential beneficiaries  increases, so too the potential for discord and litigation.

How many of us have thought about making a living will? Living wills — or, more accurately, advance decisions — enable adults with mental capacity to make a decision to refuse treatment if they lose capacity in the future.

One of the most common reasons why people lose capacity and require medical treatment is dementia. According to the Alzheimer’s Society, 225,000 people in the UK will develop dementia this year, or one person every three minutes. By 2025 there will be more than a million people with dementia in the UK.

Even though dementia is common, living wills are relatively rare. Only 5 per cent of people in the UK have made one. This ranges from 1 per cent of those aged 18 to 34, to a still modest 12 per cent of people over 75. Of course, some may have made a positive choice against making a living will, and others may have signed a lasting power of attorney that covers medical treatment. It seems likely, however, that many of us simply prefer not to think about the issue.

 Introduction

“Right-to-die cases do not need to go to court, judge rules” or “Judge changes rule on ending life support for terminally-ill” were typical of some of the inaccurate headlines which greeted the recent and important judgment of Peter Jackson J in M (by her litigation friend Mrs B) v A Hospital [2017] EWCOP 19.

The application to the Court of Protection had nothing to do with the so-called “right-to-die”, where a capacitous individual seeks medical intervention to end an intolerable life. Nor did it relate to the withdrawal of treatment for a patient who was ‘actively’ dying. Rather, it involved an application for a declaration that it was lawful to withdraw clinically assisted nutrition and hydration (‘CANH’) from a clinically stable 50-year-old patient with minimal awareness of herself or her surroundings due to neurological deterioration caused by Huntington’s disease. Tragic as they were, the facts of the case and the remedy sought were not unusual for serious medical treatment applications before the Court of Protection.

The real significance of the decision lies in the fact that, having received competing submissions on the issue, and despite expressing his decision to be on the facts of the case, Peter Jackson J determined that there is no legal obligation to seek authorisation from the Court before withdrawing CANH in PVS or MCS cases provided that: (judgment, §36-38)

  • the clinicians act in accordance with prevailing professional guidance, currently the GMC’s Good Medical Practice guidance, the BMA guidance ‘Withholding and Withdrawing Life-prolonging Medical Treatment’ and ‘End of Life Care’, and the Royal College of Physicians’ Guidance on Prolonged Disorders of Consciousness;
  • structured medical assessment has been undertaken;
  • an expert second opinion has been obtained;
  • the principles in the MCA are applied; and
  • all concerned agree that the continuation of such treatment is no longer in P’s best interests.

Notwithstanding this, we suggest that if withdrawal of CANH is proposed in a PVS or MCS patient who is not ‘actively’ dying, an extremely cautious approach should be taken to dispensing with the need for a Court application.

Background

Not to make an application to Court to authorise the withdrawal of CANH from a patient in PVS or MCS would represent a clear departure from practice established since the decision in Airedale NHS Trust v Bland [1993] AC 789.