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.

Peter Jackson J has handed down an important judgment concerning the requirement set out in PD9E for an application to be made to the Court in every case where withdrawal of clinically assisted nutrition and hydration is contemplated.  In M (by her litigation friend Mrs B) v A Hospital [2017] EWCOP 19, the judge agreed with the obiter comments of Eleanor King LJ in The Director of Legal Aid Casework & Ors v Briggs [2017] EWCA Civ 1169 at paragraph 108, that where there is no dispute about the medical treatment to be provided to an incapacitated person, then doctors can make the decision in P’s best interests and proceed with the protection from liability provided by section 5 MCA 2005.

A full update will follow on Monday, but it should be noted that the Judge specifically confined his ruling to the facts of the case, noting that although the Official Solicitor had made written submissions he had not been a party (unusually, P had been represented by her mother as litigation friend), and there had been no oral argument on the point.

The Judge’s conclusions, which he said were to be seen in light of the above, are set out at the judgment at paragraph 37-38:

  1. On the facts of this case, I do not consider it to have been a legal requirement for the decision to withdraw CANH to have been taken by the court, though it is entirely understandable that the parties sought an external decision, given the state of the law.  My reasoning on the question is as follows:

(1)        There was no statutory obligation to bring the case to court, and although the cases and materials mentioned in this judgment are of considerable authority, they do not all point in one direction and they are not formally binding upon me.  None of them sustains the proposition that a court decision is necessary as a matter of law, as opposed to as a matter of practice.  What is however clear is that the court is not the source of lawfulness: it identifies whether treatment is or is not lawful, but it cannot make unlawful treatment lawful, or vice versa.

In the final part of the sad saga regarding the withdrawal of artificial nutrition and hydration from a brain injured man in MCS, the Court of Appeal have now made it clear in Director of Legal Aid Casework & Ors v Briggs [2017] EWCA Civ 1169 that seeking an order under section 21A of the MCA is not a legitimate way of seeking a best interests declaration in respect of serious medical treatment.  King LJ said at [110]:

“…in my judgment s.21A goes to a consideration of whether the detention or deprivation of liberty is itself in P’s best interests and, whilst the surrounding circumstances are part of the picture, the question is not whether the circumstances, including the medical treatment P requires, (which amount to a deprivation of liberty), are in the best interests of P, but whether it is in the best interests of P to be a detained person.”

Update to para 5.35, page 160: Costs

In MR v SR and Bury Clinical Commissioning Group [2016] EWCOP 54[1], a rare costs award has been made in a medical case in the Court of Protection. The substantive application in this case was brought by SR’s daughter, MR, in the face of the Clinical Commissioning Group’s (‘CCG’) failure to do so. The CCG opposed the application and maintained its opposition until the Official Solicitor changed his position, after the first day of evidence. The parties then agreed that the application should be granted but Hayden J considered it necessary to hear a further day’s evidence from the three instructed experts before reaching his conclusion. MR sought her costs of bringing the application.

If you will forgive us a little self-promotion, we are very grateful for the positive reviews so far garnered by the 3rd edition.

Alex Ruck-Keene, on his fantastic Mental Capacity Law and Policy blog, referred to our publication as “the authoritative practitioner text for medical treatment cases”. He went on to note that:

The ‘process of dying’: update to main text para 15.25, fn2, page 473

NICE guidance (2017) covering the ‘Care of dying adults in the last days of life’ bit.ly/2obBMrl identifies four key elements:

  • ‘Adults who have signs and symptoms that suggest they may be in the last days of life are monitored for further changes to help determine if they are nearing death, stabilising or recovering.’
  • ‘Adults in the last days of life, and the people important to them, are given opportunities to discuss, develop and review an individualised care plan.’
  • ‘Adults in the last days of life who are likely to need symptom control are prescribed anticipatory medicines with individualised indications for use, dosage and route of administration.
  • ‘Adults in the last days of life have their hydration status assessed daily, and have a discussion about the risks and benefits of hydration options’

Best interests: the medical issues; update to main text para 3.26, page 80

A doctor cannot be compelled to treat someone.[17] A court can only consent to treatment to which the patient themselves could have consented.  Subject to an administrative court challenge,[18] the court cannot compel a Trust to offer a different treatment to a patient, even if the court concludes such a treatment would be the best option for the patient. The Supreme Court in Aintree University Hospitals NHS Foundation Trust v James [19] stated that:

Update to main text para 13.1, page 376:  Introduction

There have been significant developments in this area in recent months.

The most important is Briggs: a policeman and Gulf War veteran, injured in a traffic accident, remained in a minimally conscious state; his wife brought an application seeking withdrawal of clinically assisted artificial nutrition and hydration. Charles J’s first judgment[1] held that Mrs Briggs was entitled to bring her application for withdrawal under s21A of the Mental Capacity Act 2005.  This conclusion may have far reaching consequences for both s21A applications and serious medical treatment cases where a standard authorisation is in place. The judgment is currently under appeal, and dealt with in an update on chapter 5. In the later substantive judgment[2], Charles J granted Mrs Briggs’ application, applying the best interest test to conclude that had Mr Briggs been able to decide the matter for himself, he would not have consented to receive continued treatment by clinically assisted artificial nutrition and hydration.

Update to main text para 13.11, page 399

Mr Briggs[1] was agreed to be in a minimally conscious state; he was clinically stable and not in need of any invasive treatment. His treating team believed that he should be moved to a rehabilitation centre, where he could be monitored and potentially progress to a higher level of consciousness. His family felt that he should be transferred to a hospice, no longer provided with CANH, and allowed to die as peacefully and painlessly as possible. 

Update to main text para 13.19, page 416:  

In a fascinating speech, ‘A Matter of Life and Death’, given at Oxford on 11 October 2016,[1] Baker J addressed the courts’ current approach to whether or not to permit withdrawal of clinically assisted artificial nutrition and hydration from a patient in a prolonged disorder of consciousness.

Update to para 6.129, page 221: Conclusion and Future Legislation

The Law Commission published its final Report on Mental Capacity and Deprivation of Liberty on 13 March 2017, along with a draft Bill. The full report is available here and a summary of the Law Commission’s conclusions are set out below. As anticipated, the Law Commission focus was on creating a more workable process, whilst placing P at the heart of decision making.

Update to main text para 13.11, page 399: Withdrawal of treatment in MCS        

Abertawe Bro Morgannwg University Local Health Board v RY & CP [016] EWHC 3256 (Fam)

Decided only months after Briggs and Baker J’s Oxford speech (see main text at para 13.13.), this unsuccessful application for withdrawal of life-sustaining treatment (namely, deep suctioning to keep patent a tracheostomy tube and thus RY’s air way) is the near mirror image of Briggs in factual terms. It is also a salutary illustration of the almost unique challenge MCS poses to those evaluating the burdens and benefits of life-sustaining treatment, given our very limited understanding of the life experienced by a patient in a prolonged disorder of consciousness.

Update to para 2.5, page 33

New footnote 6:

White v Philips [2017] EWHC 386 (Ch)

The legal test as to testamentary capacity is a common law one and the classic statement of the test, being found in Banks v Goodfellow (1870) LR5 QB 549, is almost 150 years old. Since judicial application of the test occurs in contested, adversarial proceedings, the evidential burden of proof and the manner in which it shifts are significant and were live issues in this case. All of these distinguishing factors combine to make this fascinating decision of HHJ Saffman of academic interest to those concerned with the application of sections 1, 2 and 3 of the MCA 2005 to medical treatment decisions in the Court of Protection.

Update on Thefaut v Johnson, para 1.26, page 18

In Spencer v Hillingdon Hospital NHS Trust[1] it was determined that the Montgomery approach to informed consent was simply a variant of Bolam and that the test was: would the ‘ordinary sensible patient’ feel justifiably aggrieved at not being provided with the information in issue. In Thefaut v Johnson[2] Green J (correctly in the authors’ view) rejected that approach, indicating that it failed to give sufficient weight to the subjective – and patient-centric – approach required by the Supreme Court in Montgomery.[3] 

Update to para 5.12, page 132: Introduction to the Official Solicitor
para 5.26, page 147: Litigation Friend
para 5.58, page 170: The High Court’s inherent jurisdiction in relation to vulnerable adults
Appendix 5.7 

The Official Solicitor has issued a new and amplified Practice Direction - Appointment In Family Proceedings And Proceedings Under The Inherent Jurisdiction In Relation To Adults, January 2017: http://bit.ly/2lYHJ8O.
This replaces the Practice Direction issued in March 2013, set out at Appendix 5.7.

Update to para 6.1, page 174: General

R (ota Ferreira) v HM Senior Coroner for Inner South London [2017] EWCA Civ 31 addresses the tangled issue of what actually constitutes a deprivation of liberty. It is a further retreat by the judiciary from the far-reaching implications of Cheshire West.

Update to main text para 1.25 fn3, page 18: 

For guidance on consent see the Royal College of Surgeons’ Consent: Supported Decision-Making - a good practice guide: http://bit.ly/2jZ6qCo which notes:

‘The surgeon discussing treatment with the patient should be suitably trained and qualified to provide the treatment in question and have sufficient knowledge of the associated risks and complications, as well as any alternative treatments available for the patient’s condition’

Update to main text para 13.10, page 397

There has been some debate[1] as to the position where the provision of clinically assisted artificial nutrition and hydration is clearly covered by a valid and applicable advance decision to refuse treatment or has been properly delegated by a Lasting Power of Attorney[2].  

Update to main text para 13.13¸ page 406

In his Oxford speech,[1] Baker J contrasted diagnosis of brainstem activity, which can be done with neurological testing, with the extreme difficulty of diagnosing a patient’s level of consciousness, commenting:

‘The principal potential weakness is that there are no definitive criteria of awareness so that such assessments depend on judgment and interpretation which may be challenging even for the professionals experienced in carrying out the assessments. Furthermore, differences may arise between the observations professionals carrying out assessments and those of family members who, while they may lack the objectivity which the professional possesses, have spent far more time with the patient and have greater experience of interpreting their behaviour.' 

Update to main text para 10.20, page 324

Re CA (Natural Delivery or Caesarean Section) [2016] EWCOP 51 (08 December 2016)

In another application made very late in the pregnancy, Baker J lamented the applicant Trust’s failure to follow the FG guidelines which meant there was very limited time for the Official Solicitor to make proper enquiries on behalf of the woman concerned.  Even though the application was made less than a fortnight before CA was due to give birth, the Judge refused the immediate order sought, and instead granted a four day adjournment to enable the Official Solicitor to visit CA and carry out some limited investigations. He expressed the hope that those responsible for managing the case within the Trust would carry out a proper investigation as to the causes of the delay, and went on: “Hereafter, all NHS Trusts must ensure that their clinicians, administrators and lawyers are fully aware of, and comply with, the important guidance given by Keehan J in respect of applications of this sort.” The Judge was also unhappy that CA’s medical records were not available to the Court.