Judgment has today been handed down in In the matter of X (A Child) (No 2) [2021] EWHC 65 (Fam) an essential read for the law on consent to medical treatment in relation to those under 16 and those aged 16 and 17. 

The facts: 

X suffers from sickle cell syndrome and is a Jehovah’s Witness, as is her mother.  On occasion, X is admitted to hospital in a crisis when, in the opinion of her treating clinicians, a top up blood transfusion becomes an imperative necessity.   There were two such crises in June and October 2020 when urgent applications had to be made to the court for declarations permitting top up blood transfusions - see: Re X [2020] EWHC 1630 (Fam) and Re X [2020] EWHC 3003 (Fam). 

As X had presented in crisis twice in a short space of time (the last crisis having been in 2015), and having taken on board the views expressed by the court regarding the unsatisfactory nature of such serious applications being made on an urgent basis, the Trust sought a rolling two year order (to continue until X turns 18) authorising further top up blood transfusions in the event of further serious deterioration in X’s condition.   The application in October 2020 came before Sir James Munby who having made the declaration permitting a single top up blood transfusion to deal with the immediate crisis, adjourned the matter for proper and due consideration to be given to X’s application that Gillick competent minors should be afforded the exclusive right to decide their own medical care in the same way as their peers aged 18 or over.

An NHS Foundation Trust v AB

The issue in this case was whether, as the trust asserted, AB lacked capacity to make decisions about treatment relating to anorexia nervosa. She had suffered from this condition since the age of 13 and was now 28. All treatment, including nasogastric tube feeding which was the only life-prolonging treatment now on offer, had failed, and her weight of just under 26 kg (a body mass index of 9.7) was incompatible with life. Tube feeding now would cause her enormous trauma, put her at significant physical risk and could itself be fatal. The court found that AB’s anorexia was so chronic and severe that any decision she made about food, calories or weight gain could not be considered capacitous. The court also agreed that it was not in AB’s best interests to undergo further tube feeding, with or without restraint. AB died on 23 August 2020, before her application for permission to appeal the capacity decision was listed.

Avon and Wiltshire Mental Health Partnership & North Bristol NHS Trust v WA & Ors [2020] EWCOP 37

Introduction

This application concerned WA, a Palestinian refugee, who believes he was born on 29 December 1994, and who was therefore 25 years old. WA is a patient at Southmead Hospital, Bristol, having been admitted due to malnourishment. WA suffers from post-traumatic stress disorder and depression as a consequence of extreme physical and sexual abuse suffered during a ‘disastrous’ foster placement in Italy between his flight from Palestine, where he had suffered sustained abuse from members of Hamas, and his arrival in the UK in 2009.  Since his admission, WA has intermittently refused nutrition and hydration via a naso-gastric (‘NG’) tube after the Home Office accepted age assessments concluding that he was born 6 years earlier.

The age dispute did not affect WA’s right to live in the UK. On arrival in the UK, he was placed with foster carers with whom he still lives, a member of a ‘close and supportive family.’ WA claimed asylum and was (ultimately) granted indefinite leave to remain in 2019. The dispute has caused WA significant bureaucratic difficulties (for example, when he filled out completed forms, including one to volunteer at the Nightingale Hospital), but the main issue for WA was his clear belief that the Home Office stripped him of his identity, dignity, and his connection with his deceased parents and heritage.

‘For WA the removal of his date of birth is perceived as a fundamental violation of his own rights and an assault on his identity. As a prisoner in Palestine and a victim of physical and sexual abuse in Italy, WA experienced the complete negation of his autonomy at a stage in his childhood and adolescence where he might otherwise have started to explore it. Having listened to him, his parents, the psychiatrists and psychologists, during the course of this hearing, it is clear that WA experienced the change of his date of birth as effectively abusive.’ [6]

There are ongoing parallel proceedings in the administrative court to judicially review the decision of the Home Office not to change the date of WA’s birth on his biometric records. Feeling ‘hopeless,’ WA began to refuse to eat and drink.  He was eventually admitted to Southmead hospital, where he intermittently accepted IV fluids, some minimal foods, and an NG tube.  He was detained under section 3 MHA 1983 for a month, but had been discharged for a month by the time of the hearing.  The Vice President of the Court of Protection, Hayden J, found that his refusal to eat was not in any way a ‘protest’ and that ‘it would be entirely wrong to describe his actions as being on “hunger strike”’ [65].  Very sadly, he found that WA had ‘all but given up’ hope of the Home Office accepting the date of birth which his grandmother told him was his and which is such an integral part of his identity.

On 1 July 2020m WA’s weight was 47.7kg and his BMI was a precarious 14.7kg/m2.  Since 16 June 2020, he had agreed to try to take some food by mouth with additional nutritional support by NG tube and IV fluids, but NG tube feeding was necessary to ensure a nutritional intake sufficient to sustain life.  The risk of death would increase substantially as his body mass index fell. Dr R informed the court that death could occur suddenly through organ failure.

An NHS Foundation Trust v MC  [2020] EWCOP 33 (judgment here)  

Many may be surprised to discover that the question of whether an incapacitous person should undergo an invasive medical procedure that is of no therapeutic benefit to herself, but which is likely to be of benefit to a third party, has never previously been determined by the Court of Protection.   Indeed, it seems the last time any court considered a similar matter was so long ago that one Mr James Munby QC was then instructed as counsel to the Official Solicitor.[1]

Nowadays,[2] altruistic tissue donation by a live donor is regulated by the Human Tissue Authority (HTA) which holds the statutory responsibility for giving authorisation for the procedure where the donor is a child or an adult who lacks capacity.[3]  It is an offence to remove transplantable material from an incapable living person unless the HTA has determined that there is valid consent to the procedure and that no reward has been given.[4]   In the case of donation by a child[5] the HTA see no need to bring the matter before a court, as consent to the procedure can be given by a parent.[6] However, in the case of an incapacitous adult, if no one holds an LPA in respect of health and welfare matters or there is no Court Appointed Deputy, that consent can only be given by a judge of the Court of Protection. 

It was against that background that the case of An NHS Trust v MC, came before Mr Justice Cohen.

Mental capacity to consent to sexual relations is a topic which has plagued the Court of Protection for over a decade. Whether capacity is “person-specific”, “issue-specific”, “status-specific”, or “act-specific”, the case law has been difficult to penetrate at best.

The recent Court of Appeal case of Re JB (Capacity: Sexual Relations) [2020] EWCA Civ 735 seeks to wade through the muck.

The facts

This case concerns a 36-year-old man (“JB”) with a diagnosis of autistic spectrum disorder who wants to date and have sexual relations with women. He lives in supported living, partly due to his history of behaving inappropriately towards women. Evidence provided to the court at first instance suggested that JB has capacity to consent to sexual relations according to the test as generally understood (because he understands the mechanics of the act and the basic risks involved). JB did not, however, understand the concept of ensuring that his intended partners also consented.  The factual matrix articulates in very stark terms a situation with which some Court of Protection practitioners will be familiar.

Barnsley Hospital NHS Foundation Trust  -v-  MSP [2020] EWCOP 26    Judgment 3 June 2020  here

Whatever the media headlines, this is not a case about choosing to die, it is about an adult’s capacity to shape and control the end of his life. This is an important facet of personal autonomy which requires to be guarded every bit as jealously for the incapacitous as for the capacitous[47].

In a thoughtful and sensitive judgment, the Vice President of the Court of Protection has emphasised again how the principle of sanctity of life may give way to the right of self-determination; and how P’s best interests may be best served by giving effect to what the patient would choose for themselves were they able to do so, even if that choice means death.

The issue

MSP, a man in his thirties, was heavily sedated in ICU following abdominal surgery to insert a stoma.  He was ventilated and receiving total parenteral nutrition.[1]  MSP had experienced serious gastrointestinal problems for a decade and had written an “Advanced Directive” spelling out the terms on which he did – and did not – wish for medical treatment to prolong his life.  With the need for a stoma now permanent, and the prospect of an equally permanent need for artificial nutrition and hydration, the question for the court was whether it was in MSP’s best interests to continue to receive such treatment.

Testamentary capacity and Lord Templeman’s will

Introduction

On 19 March 2020, Mr Justice Fancourt handed down judgment in the matter of Re Baron Templeman of White Lackington (Deceased)[2020] EWHC 632 (Ch). The case concerned the validity of the last will of Lord Templeman, who sat in the House of Lords from 1982 to 1994. No post about Lord Templeman would be complete without reference to his forthright and uncompromising manner. One of the many accounts of his dealings with Counsel included a case where he had been characteristically robust with Leading Counsel. Having concluded with the Leader he asked whether Junior Counsel wished to make any submissions. ‘Not without a helmet my Lord’ came the reply.

Lord Templeman died in 2014 and the sole issue in the case was whether he had testamentary capacity when he executed his last will in 2008, 6 years before. The 2008 will was neither witnessed nor approved by a medical practitioner.

The claimants (the stepdaughters of Lord Templeman’s late wife) sought to propound the 2008 will, whereas the first and second defendants (the younger son and daughter-in-law of Lord Templeman) contended that it was invalid.

The ‘golden rule’ places a requirement on a solicitor or will writer to assess whether the testator has testamentary capacity, and if necessary, to obtain medical evidence to support this. Incredibly (and in an ironic twist), the development of the golden rule was advanced by Lord Templeman himself in Kenward v Adams ChD 29 November 1975, and Re Simpson [1977] 121 SJ 224 where he determined that ‘… the making of a will by an aged or seriously ill testator ought to be witnessed or approved by a medical practitioner who has satisfied himself of the capacity and understanding of the testator, and records and preserves his examination or findings’.

As stated by Mr Justice Fancourt at [116] it is ‘commonplace that people who are able dispassionately to give good advice to others do not always follow such advice themselves, or believe themselves to be in need of it’.

 This blog is written towards the beginning of the Covid-19 lockdown. We are not yet three weeks in, and do not know what the future holds.  This post has already been updated once since publication and in the fast paced news of coronavirus, more updates will come.  This post therefore may not be an exhaustive analysis, but we will revisit the subject as and when developments require.  We would also welcome any relevant new information on the topic, especially from those at the front line: please send to This email address is being protected from spambots. You need JavaScript enabled to view it..

 The Government is clear that there is not, and is unlikely to be, a situation where there are more patients nationally requiring ventilation than there are ventilators.  If achieved, avoidance of the situation faced by doctors in Italy and Spain will come about by a combination of increased supply of ventilators, moving patients and ventilators around to match supply to demand, and the application of tough triage criteria, so that access to ventilation is limited to those likely to make a recovery.

But avoidance cannot be guaranteed. Local surges in demand will occur, and may lead to temporary shortages.  The risk of demand exceeding supply exists.  News reports in The Guardian and Daily Mail suggest that this has already happened in some hospitals.

Were that risk to eventuate, the withdrawal issue would arise:

Can a ventilator ever lawfully be removed from a ventilated patient who may be deriving benefit from it, for the purpose of providing that ventilator to different patient?

If it can, how should withdrawal and reallocation decisions be made?

In our view, these questions should be asked and answered now, before the risk eventuates, and in the profoundest hope that it never does.

Mostyn J’s judgment in a novel case concerning withdrawal of life sustaining treatment in the Court of Protection’s first ever Skype trial

In a trial lasting three days, conducted entirely remotely through the medium of Skype, no one could fail to be moved when watching a video clip of a man in his seventies, known as “AF” in these proceedings, moving his hand rhythmically, marking the beat to the tune of Irish Eyes. What made this so poignant was that AF had suffered a catastrophic stroke in May 2016 which rendered him severely disabled and incapacitous, but still sentient and, as the Judge observed, AF was plainly enraptured listening to the musician playing before him.   

This very sad case found its way into a newly-styled virtual courtroom the day after Boris Johnson urged the nation to avoid non-essential contact in the midst of the Covid-19 pandemic. Thus began the first ever remote trial on the most sensitive of issues – should AF continue to receive life-sustaining nutrition and hydration via a percutaneous gastrostomy (“PEG”) or should it be withdrawn, a decision which would almost certainly lead to his death.

Private Client analysis: The judgment considers the correct legal framework to apply where a person before the Court of Protection has capacity to make decisions regarding their medical treatment but could lose that capacity under certain circumstances. Rhys Hadden examines the case.

An NHS Foundation Trust and another v R [2020] EWCOP 4, [2020] All ER (D) 07 (Feb)

What are the practical implications of this case?

The judgment deals with a number of different issues in relation to serious medical treatment cases, particularly in cases involving obstetric care and Caesarean sections.

The central focus of the decision is concerned with identifying the correct legal framework to be applied where the Court of Protection is confronted with the position that the person before it currently has capacity to make the relevant decision(s) but there is clear evidence that under some circumstances they may not do.

The courts in the time of coronavirus: a personal perspective on the first remote hearing during the crisis

Mostyn J hears trial concerning withdrawal of life sustaining treatment with five parties and at least 20 participants over Skype for Business  (REVISED POST)*

In December 2019, Keehan J presided over a directions hearing in a serious medical treatment application brought by a CCG.  A dispute had arisen as to whether or not it was in the best interests of A, a man in his 70s who suffered a stroke in 2016, to continue to receive clinically assisted nutrition and hydration (CANH).  A’s daughter believes CANH should be removed; his GP thinks it should stay in place. A is not in a prolonged disorder of consciousness: despite significant impairment, he communicates with those caring for him in gestures and occasional words, and enjoys seeing animals and children, and hearing poetry.

In itself, this would be an unusually difficult and sensitive case for the Court of Protection, and Keehan J listed it for four days, including a day of judicial reading time.  As preparation progressed, it became clear that it was going to be a tight timetable. Between them, the five parties (CCG, A, represented by the Official Solicitor, A’s daughter, A’s GP, and the local authority) were calling eleven witnesses to give oral evidence, including three independent expert consultants; all five parties would be making closing submissions; and the evidence available to the court ran to well over 4000 pages.  What makes this case even more unusual is that the judge listed it to start on Tuesday 17 March 2020, less than 24 hours after the nation was directed to avoid all non-essential contact to stem the rising tide of Covid19.

At 6.50 am on 10 February 2020 Matt Hancock signed off the Health Protection (Coronavirus) Regulations 2020, SI 2020/129. The press reported that the urgent need for the regulations was that some people subject to quarantine by agreement had said they could see little point in the process and intended to leave. I suggested when I last wrote about quarantine that the lack of an enforcement power made contractual agreement a shaky basis for detaining hundreds of people for 14 days.

The Secretary of State has now put in place a raft of coercive powers, including a power to hold people in isolation and for a constable to take someone back to isolation – using reasonable force – and to enter premises to enforce the regulations.  This note summarises those powers.

The new regulations create additional powers to control people who may have coronavirus where the Secretary of State declares that the transmission of coronavirus is a “serious and imminent threat to public health” by way of a notice on the gov.uk website – gone are the old days of publishing notices in the Official Gazette.  At the same time as making the regulations the Secretary of State declared that such a threat existed, and that, for the purposes of exercising these powers, Wuhan and Hubei province were “infected areas” and that Arowe Park and Kents Hill Park hospitals were “isolation facilities”.

A note on the law and practice of quarantine – of individuals, of groups and of places, of the unwell and of the healthy.

  1. Kaci Hickox is a Johns Hopkins’ qualified nurse who worked as a team leader in an Ebola treatment unit in Sierra Leone in September 2014. When she arrived at Newark Liberty International Airport on 22 October 2014 she was taken into custody for 80 hours.  On the same day the governor of New Jersey had signed an executive order providing that travellers arriving at New Jersey who were asymptomatic but at high risk of exposure to Ebola could, if out of state residents, be transferred to a “temporary housing arrangement”.  In response to her detention Ms Hickox brought a claim against the state of New Jersey, including for violation of her right to be free from deprivation of liberty, denial of due process and false imprisonment.
  1. Time Magazine gave “Ebola fighters” their Person of the Year award in 2014, the article noting of Ms Hickox’s quarantine: “The problem with irrational responses is that they can cloud the need for rational ones”.
  1. In July 2017 Ms Hickox entered into a settlement agreement with the state of New Jersey. The parties agreed to a new Addendum to the “New Jersey Mandatory Quarantine and Screening Protocols” for Ebola Virus disease.  The state agreed only to use quarantine “insofar as a medically and epidemiologically necessary” and only after less restrictive measures had been “explicitly explored”.  An order providing for quarantine would have to give a start date and an end date and state the legal authority and medical basis on which it was issued.  It would need to explain why less restrictive options had been rejected and confirm the right of the person in quarantine to a lawyer and to challenge the order[1].

Judges in the Family Division and the Court of Protection are regularly asked to perform the unenviable task of balancing the pros and cons of continuing life-sustaining treatment. The Judge’s decision determines whether the person at the heart of those proceedings should live or die. As the Supreme Court confirmed in a number of appeals including those launched on behalf of both Charlie Gard and Alfie Evans, the Judge must apply the best interests tests in serious medical treatment cases. Thus, although the individual facts will frequently place a great burden on the Court, the legal test at least, is clear.  

In Manchester University NHSFT v Midrar Namiq (a minor) and others, [2020] EWHC 6 (Fam) Lieven J was asked to consider a different, but equally momentous issue – whether the child was in fact already dead.

The Trust argued that the Court’s function was to assess whether the relevant testing had established “on the balance of probabilities” that the child was brain stem dead. In contrast, the family’s representatives argued that the Court’s role was to apply the best interests test to the question of whether the intensive care support that was still keeping oxygenated blood circulating the body should be removed.

The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust and Dorset Healthcare University NHS Foundation Trust and SE (by her litigation friend, the Official Solicitor) [2018] EWCOP 45

When incapable patients require life saving surgery against their wishes, judges of the Court of Protection are readily available to provide best interests declarations at short notice. However, making such life and death decisions under pressure will never be the preferable approach. As this recent case shows, the court will look disapprovingly on NHS Trusts who leave such applications to the very last minute. All NHS Trusts should ensure their staff understand the correct procedural routes to approach the court and that these are used before a difficult case has become an emergency.

Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG and another [2019] EWCOP 21

What are the practical implications of this case?

‘The Lord giveth, and the Lord taketh away’ (Job 1:21). If this phrase reflects the patient’s (P) views on life, the Court of Protection will need to take it into consideration, as should the treating hospital prior to bringing an application for withdrawal of life-sustaining treatment. In this case, the Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust (the Trust) sought to withdraw endo-tracheal intubation, but the same principles would apply to withdrawal of clinically-assisted nutrition and hydration (CANH).

The recent case of Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG and another confirms that the focus of any decision to withdraw CANH must remain firmly on the individual at the heart of the case, and on their wishes, views and beliefs.

The issue in this case was whether continuation of intubation was in the best interests of P. Withdrawal of treatment would certainly lead to P’s death. The Trust argued that given the medical evidence, there was no benefit in continuing treatment except that P would remain alive.

On 16 July 2019, Mr Justice Hayden, the Vice President of the Court of Protection, handed down his judgment in the case of LB Tower Hamlets v NB & AU [2019] EWCOP 27 which considered the test for capacity to consent to sexual relations. 

Why is this judgment significant?

The case considered whether ‘the test’ could and should be nuanced to take account of the particular circumstances of P as opposed to simply being issue or act specific. Such an approach could be viewed as a development from previous authorities; including the recent Court of Appeal decision of B v A Local Authority [2019] EWCA Civ 913.

The very clear message from this judgment is that it is essential to consider capacity to consent to sexual relations (and indeed when assessing P’s capacity to make decisions in all areas of life) based on the full facts of P’s situation, and with an awareness that a conclusion that P lacks capacity will be an interference with their rights.

The court did not make any conclusions as to whether NB had, or lacked capacity to consent to sexual relations, and it may be that a final judgment will be handed down in due course if the Local Authority undertake a reassessment of NB’s capacity in the light of the judgment.

Williams J approves plan for covert sedation and C-section of incapacitous 25 year old

The best laid plans …

In NHS Trust v JP [2019] EWCOP 23[1], in a decision which emphasises the importance of an overall evaluation of best interests rather than placing undue focus on any one of several important factors, Williams J made declarations that a pregnant woman with a learning disability lacked capacity to make decisions about her obstetric care and the delivery of her baby and that, notwithstanding her wish to have a natural delivery, it was in her best interests to undergo a caesarean section, with restraint and covertly administered sedation if required, because of her perceived inability to cope with a natural delivery.

In the event, JP went into labour spontaneously the day after the hearing, and delivered a healthy baby naturally at the hospital, with no restraint or sedation being required. The fact that JP confounded the expectations of the clinicians, the lawyers and the court does not, of course, mean either that the application was ill-founded or that the court’s decision was wrong, but as the judge commented in a postscript to his judgment: “The capacity for individuals to confound judges’ assessments is a reminder (to me at least) of the gap between probabilities and actuality.”

 

“The efficacy of the MCA is dependent upon getting the balance right between empowering and protecting the incapacitous”

In the matter of Domenica Lawson [2019] EWCOP 22

https://www.bailii.org/ew/cases/EWCOP/2019/22.html

David Lawson

Autonomy and protection are the two principles at the heart of the MCA. One of the many ways they push up against each other is in determining the role that families should take in making decisions about the welfare of their adult children. For any particular decision we can well see that objective decision making by engaged professionals may lead to a better outcome where there is proper respect afforded to P’s wishes and feelings as part of a full best interests consultation. But professionals can fall short of that exercise and too easily discount P’s wishes or the views of those who know him/her best. Can professionals have the same long term role as family – and even if they could, does the state any longer have the staff or the budgets to be engaged in someone’s life over the longer term? If not, is a personal welfare deputy the answer?

Section 16 (4) MCA tells us that a decision of the court should be preferred to a decision of a deputy and that the powers of a deputy should be as limited in scope “as is reasonably practicable in the circumstances”.

B v. A Local Authority [2019] EWCA Civ 913

What should assessors and the courts do where someone appears to have capacity in some areas of decision-making but to lack capacity in related areas?

A well-known problem

This conundrum is well known and hard to resolve.  It most often arises where an individual has capacity to consent to sexual relations but lacks capacity to make decisions about contact.  Sexual capacity one of the lowest hurdles to jump because for people of full capacity that decision is often “visceral rather than cerebral, owing more to instinct and emotion than to analysis” (In re: M (an adult) (capacity: consent to sexual relations) [2014] 3 WLR 409 para 80: https://www.bailii.org/ew/cases/EWCA/Civ/2014/37.html).  A decision about contact is considered to require more analysis and the bar is accordingly higher.  What happens where someone has capacity to consent to sexual relations but not to make decisions about contact with their preferred partner?

The problem received intense press scrutiny last year in a well publicised case before Hayden J in which a young woman was found to have capacity to consent to have sex and to marry, but to lack capacity to make decisions about contact (Manchester City Council Legal Services v LC & Anor [2018] EWCOP 30: https://www.bailii.org/ew/cases/EWCOP/2018/30.html). In that case, Hayden J did not have to resolve the profound question ‘whether’, as he elegantly put it, “the MCA, by collateral declarations, is apt to limit the autonomy of individuals in spheres where they are capacitous”, but said that any such case should be heard by a High Court judge.

University Hospitals of Derby and Burton NHS Foundation Trust v J (by her litigation friend, the Official Solicitor) [2019] EWCOP 16, [2019] All ER (D) 106 (May)

What are the practical implications of this case?

‘Do we need to make an application to the court or can we just get on and treat? It’s obviously in P’s best interests and everyone agrees—even the Official Solicitor and the family.’ If there was a poll among the Court of Protection Bar of the question we are most frequently asked (and most frequently late on a Friday evening) that one would win the prize. ‘Do we need a declaration?’ In An NHS Trust and others v Y (by his litigation friend, the Official Solicitor) and another [2019] UKSC 46, [2018] All ER (D) 167 (Jul) , the issue was the withdrawal of clinically-assisted nutrition and hydration (CANH)—leading inevitably to P’s death. Re Y marked the apogee of judicial debate on the discrete issue of the withdrawal of CANH and the position is now reasonably clear following judgment and the British Medical Association/Royal College of Physicians guidance. Although the obligation on hospital trusts and clinical commissioning groups to bring an application in respect of other treatments where all parties are in agreement has evidently reduced, the threshold above which an application should be made has not been clearly defined in any case. University Hospitals of Derby and Burton NHS Foundation Trust v J is an example of a case which clearly had to be brought to court, despite the agreement of all concerned that the treatment was in P’s best interests—it is a useful reminder that there are many such cases where an application must still be made.

Background

Mrs Rushton lived a long and happy life. In her youth she worked as a nurse, married a man who adored her, and together with her husband raised four sons. After her husband passed away, “the sweetness went out of her life”, and Mrs Rushton began to display the early signs of dementia. 

On 24 July 2014, Mrs Rushton signed an Advance Decision Refusing Treatment (ADRT) stating that “on collapse, I do not wish to be resuscitated by any means. I am refusing all treatment. Even if my life is at risk as a result…this direction is to be applied”. Mrs Rushton left her ADRT in the safe-keeping of her general practitioner.

On 21 December 2015, Mrs Rushton fell and suffered a major head trauma which was “so significant that she was not expected to survive”. She defied the doctors’ expectations and lived, although did not regain consciousness. The Hospital was informed of the existence of an ADRT and so telephoned Mrs Rushton’s GP to learn the detail: as recorded in the hospital notes, the GP said that “the only ADRT in place is in regards to do not resuscitate”. Accordingly, the medical staff inserted a percutaneous endoscopic gastronomy (PEG) tube so that Mrs Rushton could receive nutrition whilst she was discharged home, albeit in the expectation that she would soon die.

However, being well-cared for by her youngest son, she lived on for almost three years in a persistent vegetative state before the question of withdrawing treatment came before the court. The question for the court was whether continuing to provide clinically assisted nutrition and hydration (‘CANH’) would be in Mrs Rushton’s best interests particularly in light of her earlier ADRT.

Dr Esegbona (on behalf of the estate of Christina Esegbona, deceased) -v- King’s College Hospital NHS Foundation Trust  [2019] EWHC 77 (QB)

Introduction

  1. When Mrs Esegbona fell ill in October 2010, requiring a tracheostomy, there was no question she needed hospital care. However, when she was ready for discharge, the Trust’s staff repeatedly ignored her express wish to have the tracheostomy removed and go home to her family.  For over three months, the Trust failed to comply with its duties under the Mental Capacity Act 2005, and instead took a ‘high-handed’ and “oppressive” approach. The Trust deliberately excluded her family from any decisions concerning her future care, moving Mrs Esegbona to a nursing home many miles away from her home and family.

  2. Had the Trust complied with its duties under the MCA, Mrs Esegbona’s wishes and feelings would have been considered: she would have had "a voice". .. her frustration and distress would have been significantly reduced”. Instead, just nine days after being moved, Mrs Esegbona died, “frightened, distressed and alone (when she should not have been)…”

  3. In January 2019, HHJ Coe QC delivered judgment. The court found clinical negligence, and awarded significant damages and aggravated damages for Mrs Esegbona’s false imprisonment. Importantly, this case demonstrates that a person can recover substantial awards if they are falsely imprisoned, their wishes ignored, and kept, not just away from home, but from any environment that would be more suitable, in circumstances which cause them considerable distress [234 – 236]. It also serves to strengthen the approach to damages taken in the deprivation of liberty HRA case of Essex County Council v RF & Ors (more commonly known as the “Fluffy” case) [2015] EWCOP 1.

On 25th July 1978 something rather remarkable happened. A baby girl was born to two doting parents. Now some days short of her 40th birthday there is nothing to indicate that she is one of the most extraordinary human beings of all time. Louise wasn’t just another baby girl in the maternity wing at Oldham General Hospital – her parents, Lesley and John Brown had battled for nearly a decade to conceive a child and then – when investigations revealed that Lesley’s fallopian tubes were blocked – nearly gave up the struggle.   But having fought against the odds for so long, their luck changed when they met Patrick Steptoe and Robert Edwards in 1976.   Steptoe and Edwards were carrying out research into artificial insemination. In 1977 they fertilised Lesley Brown’s eggs in a petri dish and then implanted her with a two and a half day old embryo.

The rest is history. Louise was the first human to be conceived using in vitro fertilisation. IVF gradually became widely available and recent estimates suggest that approximately 6 million people have been conceived worldwide with IVF in the last 40 years.

 M v ABM University Health Board [2018] UKUT 120 (AAC) (UTJ Mitchell)

Background

The appellant was a patient (‘Mr M’) detained for treatment pursuant to section 3 of the Mental Health Act 1983 since 26 March 2015. The respondent was ABM University Health Board, the responsible authority.

 The precise chronology is difficult to specify, but it is clear that over various periods of time, Mr M was covertly administered various medications to meet his complex mental and physical health needs.  It is also clear that although he posed various “management challenges” to staff caring for him, he was also at times compliant with medication.

 A decision was taken to provide Mr M with covert medication on the basis of what was said to be a best interest meeting and an assessment of Mr M’s capacity to consent to treatment, although it appears that the documents evidencing the decision and assessment were not provided to the Tribunal.  However, the covert medication regime was not consistently in place and at the time of the Tribunal, Mr M had not been receiving covert medication for some three months, a fact which was not put before the Tribunal.

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.