Royal Courts of Justice
Strand, London, WC2A 2LL
Before :
MR. JUSTICE WILLIAMS
Between :
NHS Windsor and Maidenhead Clinical Commissioning Group | Applicant |
- and - | |
SP (by her Litigation Friend the Official Solicitor) (Withdrawal of CANH) | Respondent |
Ms Victoria Butler-Cole (instructed by Capsticks LLP) for the Applicant
Mr. James Beck (instructed by Official Solicitor) for the Respondent
Determined on Paper Application
Judgment Approved
MR. JUSTICE WILLIAMS
This judgment was delivered in private. The judge has given leave for this version of the judgment to be published on condition that (irrespective of what is contained in the judgment) in any published version of the judgment the anonymity of the incapacitated person and members of their family must be strictly preserved. All persons, including representatives of the media, must ensure that this condition is strictly complied with. Failure to do so will be a contempt of court.
Mr. Justice Williams :
Introduction
Windsor, Ascot and Maidenhead CCG (Footnote: 1) (The CCG) have applied to the court for a personal welfare order in respect of SP. The order sought is for a Declaration and Order that it is not in SP’s best interests for Clinically Assisted Nutrition and Hydration (CANH) to be continued. In tandem with the withdrawal of CANH palliative care will be provided. The consequence is an expectation that SP will die within 7-14 days.
The Patient
SP was 50 years old when she suffered a cardiac arrest on 3 October 2014. She was admitted to Wexham Park and subsequently Northwick Park Hospital and has never regained consciousness. In early 2015 she was diagnosed as being in a continuing vegetative state and in April 2015 as being in a permanent vegetative state (PVS). She has been in receipt of CANH since October 2014. Since 23 March 2015 SP has been cared for at a nursing home.
At the time of the incident SP was working and caring for her family. Her youngest child was 7 years old. By March 2015 the guardianship arrangements for SP’s minor children with close relatives were finalised.
The accounts of her family provide a vivid picture of SP prior to her cardiac arrest. Full of life, warm and caring, utterly dedicated to her children, lively, a sense of fun, quirky, a love of the outdoors and of animals.
They also illustrate her desperate condition since October 2014. Her lack of awareness of her surroundings, her physical disabilities; a life as profoundly altered as can be imagined. Her family who love her dearly continue to visit her and to care for her. They all have reached the view that it is in her best interests now that CANH be withdrawn. They accept the inevitable outcome of that decision.
Medical Assessment
On 3 March 2016 Professor Derick Wade provided a report in accordance with a request from the CCG following the GMC Guidance and the Royal College of Physicians (RCP) guidelines. He concluded that SP was in a Persistent Vegetative State and that it was not in her best interests for CANH to continue. The salient points are
SP had a cardiac arrest and it took over 25 minutes for cardiac circulation to be re-established. She was unconscious from the start and remained so whilst a patient at Wexham Park.
She was admitted to Northwick Park on 21 January 2015. During her time there she showed no behaviours suggestive of any consciousness or awareness. She was assessed on the Wessex Head Injury matrix on at least 14 occasions as well as the Sensory Modality Assessment and Rehabilitation Technique and the Coma Recovery Scale – Revised. The overall conclusions of these assessments were that there were no behaviours indicative of consciousness and that any movement was automatic not indicative of awareness.
Since her discharge to a care home there has been no evidence of conscious awareness.
He concludes SP is in a permanent vegetative state arising from severe hypoxic brain damage. She is now unaware of herself or her environment. No further improvement will occur. No intervention will raise her level of consciousness.
No further investigations are needed.
She has extremely limited responses, is totally dependant and inactive and unable to participate in society in any way.
Professor Turner-Stokes, a consultant and professor in Neurological Rehabilitation diagnosed SP as being in a PVS in April 2015. In her report of November 2016 she concluded
SP is in a permanent vegetative state following a hypoxic brain injury.
The diagnosis is based on evaluation carried out by professionals over a 20 month period.
At this point over 2 years after her original injury it is highly improbable she would ever recover.
Her life expectancy is 5-7 years. If CANH were withdrawn she would die within 2-3 weeks.
On 20 November 2017 Dr Andrew Hanrahan reported on SP. He was instructed by the Official Solicitor. His report confirms much that the earlier doctors had concluded. The salient points in his report are
There is conclusive evidence of absence of the two basic attributes of consciousness; arousal and awareness. SP is in a PVS arising from non-traumatic acquired brain injury arising out of her cardiac arrest. The cause of her condition is known, all reversible causes can be excluded, she has been carefully assessed. The RCP Guidelines for a diagnosis of PVS are fulfilled.
Her condition is permanent. She is highly unlikely to ever recover to a state of even minimal consciousness.
Her treating physicians had carefully and thoroughly applied the RCP Guidelines and there was no need for further assessments.
SP’s life expectancy may be 12-15 years.
There was a consensus among SS’s family, the nursing and medical teams, the supervising clinical professionals in neuro-rehabilitation and palliative care and the experts that further CANH was not in her best interests and was futile and of no benefit to her. Dr Hanrahan agrees with this.
A Palliative Care Plan has been drawn up which I have read.
Best Interests Consultation
A best interests meeting was first held in March 2015 which concluded that SP would not have wanted her life prolonged in her current situation. However because issues of guardianship of the children needed to be resolved no steps were then taken to withdraw CANH.
A further meeting took place on 7 October 2016 which also concluded SP would not want to be kept alive in her current state and that it was in her best interests to withdraw CANH and to provide palliative care only. I have read the Minutes of that meeting which involved discussions amongst the professionals and with the family.
The Inquiries conducted by the Official Solicitor
The caseworker has spoken to those who seem to be the most important people in SP’s life in particular her adult children, her close family and the nursing staff most directly responsible for her care. He has not spoken to her minor children but the views of the elder have been communicated to him via the maternal aunt. All agreed – albeit it was very difficult for some of them – that SP would not have wished to live in this condition and that it was in her best interests to withdraw CANH. This of course reflects the best interests meetings held in 2015 and 2016.
Proceedings
On 28 October 2016 the CCG approached the Official Solicitor (OS) to invite him to consider a streamlined application to the court. On 12 January 2017 the OS agreed to act for SP and to investigate her case. The OS instructed a further expert Dr Hanrahan. He reported on 17 July 2017 and the OS caseworker consulted the family.
On 15 and 16 February 2018 the Official Solicitor confirmed that he and the family were content for the application to be made on paper.
The proceedings were issued on 19 March 2018. The Court was invited to determine the application without a hearing but with the provision of a public judgment.
The issue of whether cases involving the withdrawal of CANH must be sanctioned by the court where the doctors and the family are agreed that it is in the bests interests of the patient has received some considerable attention in the last months.
In M-v-A Hospital [2017] EWCOP 19 Peter Jackson J as he then was concluded that the decision about the patient’s best interests could lawfully have been taken by her treating doctors having fully consulted her family and having acted in accordance with the MCA and recognised medical standards and so without an application to the court. However he observed that such cases were intensely fact specific and that treating doctors should not hesitate to approach the Court of Protection in any case where it seems right to do so.
Director of Legal Aid Casework and Others -v- Briggs [2017] EWCA Civ 1169, where the Court of Appeal stated that if the medical treatment proposed is not in dispute, then, regardless of whether it involves the withdrawal of treatment from a person who is minimally conscious or in a persistent vegetative state, it is a decision as to what treatment is in P's best interests and can be taken by the treating doctors who then have immunity pursuant to section 5 MCA.
Re Y [2017] EWHC 2866 (QB) where the court concluded that there is no rule of principle or binding authority for the proposition that there is a legal obligation that all cases concerning the withdrawal of CANH from a person who lacks capacity must be sanctioned by the court.
The decision in Re Y has been appealed to the Supreme Court who have heard argument but have not delivered their judgment.
Section 42(4)(e) of the MCA provides that a person acting in a professional capacity in relation to a person who lacks capacity must have regard to any relevant code of practice but the codes of practice do not create independent legal obligations.
The MCA Code of Practice contains the following provisions:
Some treatment decisions are so serious that the court has to make them – unless the person has previously made a Lasting Power of Attorney appointing an attorney to make such healthcare decisions for them … or they have made a valid advance decision to refuse the proposed treatment … The Court of Protection must be asked to make decisions relating to the proposed withholding or withdrawal of artificial nutrition and hydration (ANH) from a patient in a permanent vegetative state (PVS) …"
Prior to the Act coming into force, the courts decided that some decisions relating to the provision of medical treatment were so serious that in each case, an application should be made to the court for a declaration that the proposed action was lawful before that action was taken. Cases involving any of the following decisions should therefore be brought before a court… decisions about the proposed withholding or withdrawal of artificial nutrition and hydration (ANH) from patients in a permanent vegetative state (PVS)."
The CCG has therefore taken the precaution of applying to the court but invite the court to deal with the application on the papers and without a hearing. The Court of Protection Rules 2017 3.6(4) permit the court to deal with an application without a hearing. The overriding objective (COPR 1.1) applies to the decision whether to determine an application without a hearing. Ms Butler-Cole instructed by Capsticks LLP filed a Position Statement setting out the CCG’s position. Mr James Beck, an employed lawyer at the OS filed a statement on behalf of the OS. I am satisfied that I can determine this case justly and in particular ensuring that SP’s interests and position are properly protected without a hearing. I am mindful that in respect of an application made by agreement there are always more investigations that can be made, questions that can be asked, stones that can be turned. Here, I am satisfied that the court had all the essential information and that further inquiries would not alter the fundamentals and would only lead to further delay in taking action on a decision that most have agreed is in SP’s best interests for some time now.
The Substantive Application: Legal Framework
The Mental Capacity Act 2005 sets out the statutory scheme in respect of individuals aged over 16 who lack capacity. Section 15 gives the court the power to make Declarations as to whether a person lacks capacity to make a specified decision and the lawfulness or otherwise of any act done or to be done in relation to that person. Section 16 gives the court the power to make an order and make the decision on a person’s behalf. Section 48 gives the court discretion to make an order on an interim basis and in particular if it is in the person’s best interests to make the order without delay.
The Mental Capacity Act 2005 deals with the jurisdiction of the court by implementing into domestic law the jurisdictional provisions contained in the 2000 Convention on the International Protection of Adults; s.63 MCA 2005 and Sch 3. Part 2 and in particular paragraphs 7(1)(a), (c) and (d). Thus the courts of England and Wales would have jurisdiction over a person habitually resident in England and Wales. SP is habitually resident in England and Wales.
Section 2(1) of the Act provides that a person lacks capacity if,
‘at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.’
It does not matter whether the impairment or disturbance is permanent or temporary. The determination of whether a person lacks capacity is to be made on the balance of probabilities. Section 3 sets out various criteria by which the court should determine whether a person is unable to make a decision. It is clear that SP lacks capacity given her diagnosis and inability to communicate so it is not necessary to explore these criteria in further detail.
Section 1 of the Act sets out the principles applicable under the Act. Sub-section (5) provides that
‘An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made in his best interests.
Section 4 of the Act deals with ‘Best interests’
(1)In determining for the purposes of this Act what is in a person's best interests, the person making the determination must not make it merely on the basis of—
the person's age or appearance, or
a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests.
(2)The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.
(3)He must consider—
(a)whether it is likely that the person will at some time have capacity in relation to the matter in question, and
(b)if it appears likely that he will, when that is likely to be.
(4)He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.
(5)Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.
He must consider, so far as is reasonably ascertainable—
the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),
the beliefs and values that would be likely to influence his decision if he had capacity, and
the other factors that he would be likely to consider if he were able to do so.
(7)He must take into account, if it is practicable and appropriate to consult them, the views of—
(a)anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,
anyone engaged in caring for the person or interested in his welfare,
any donee of a lasting power of attorney granted by the person, and
any deputy appointed for the person by the court,as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).
(8)The duties imposed by subsections (1) to (7) also apply in relation to the exercise of any powers which—
are exercisable under a lasting power of attorney, or
are exercisable by a person under this Act where he reasonably believes that another person lacks capacity.
(9)In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned.
“Life-sustaining treatment” means treatment which in the view of a person providing health care for the person concerned is necessary to sustain life.
(11)“Relevant circumstances” are those—
of which the person making the determination is aware, and
which it would be reasonable to regard as relevant.
(my added emphasis)
The courts have emphasised in a variety of contexts that ‘best interests’ (or welfare) can be a very broad concept.
Re G (Education: Religious Upbringing) [2012] EWCA Civ 1233, 2013 1 FLR 677.
Re A (A Child) 2016 EWCA 759.
An NHS Trust v MB & Anor [2006] EWHC 507 (Fam).
Re G (TJ) [2010] EWHC 3005 (COP).
Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591.
Legal Principles on Best Interests and Withdrawal of Life Sustaining Treatment
Whether or not a person has the capacity to make decisions for herself, she is entitled to the protection of the European Convention on Human Rights. The fundamental principle of the sanctity of human life is enshrined in Article 2 of the Convention: everyone's right to life shall be protected by law. Further in the present context, Article 3 (protection from inhuman or degrading treatment) is relevant. In addition it is an aim of the UN Convention on the Rights of Persons with Disabilities to secure the full enjoyment of human rights by disabled people and to ensure they have full equality under the law. In cases such as Lambert-v-France (20160 62 EHRR 2) the European Court of Human Rights has confirmed that the withdrawal of life sustaining treatment engages a State’s positive obligations under Article 2 but that permitting withdrawal and the circumstances under which it was permitted and how the balance was struck between the right to life and the protection of their right to respect for their private life and autonomy were within the margin of appreciation of states. The ECtHR retains a right to review whether in any particular case an individuals Article 2 rights had been infringed or were within the margin of appreciation.
In a case of this kind, the fundamental starting point is a strong presumption that it is in a person's best interests to stay alive. The right to life is not absolute. As a matter of principle, the withdrawal of CANH from a person who lacks capacity, resulting in his death, may be lawful where it is not in his best interests to continue such treatment: Airedale NHS Trust v Bland [1993] AC 789 (HL) per Lord Keith p.859B-D; Lord Goff pp.866G-868E; per Lord Lowry p.877B; Lord Browne-Wilkinson pp.884G-885B; Lord Mustill pp.897F-898A.
In Aintree University Hospital NHS Trust v James [2013] UKSC 67, the Supreme Court considered the first case to come before it under the MCA. Baroness Hale, giving the judgment of the court, stated at paragraph [22]:
‘[22] Hence the focus is on whether it is in the patient's best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.’
‘[39] The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.’
At [44-45] it is said that the purpose of the best interests test is to consider matters from the patient's point of view. Where a patient is suffering from an incurable disability, the question is whether she would regard her future life as worthwhile. As was made clear in Re J [1991] Fam 33, it is not for others to say that a life which a patient would regard as worthwhile is not worth living.
Where the patients’ condition may improve a best interests decision may be based on the ‘best case’ scenario.
It is a universal framework that applies regardless of the diagnosis, and whether the individual is in a vegetative or minimally conscious state, and whether their condition arose as a result of a traumatic event (as with Mr Briggs) or a chronic illness.
Whilst the application of the law requires sensitivity and care, it is now clear and well-established. In Re A (A Child) 2016 EWCA 759, the Court of Appeal said:
In considering the balancing exercise to be conducted:
“‘1. The decision must be objective; not what the judge might make for him or herself, for themselves or a child;
Best interest considerations cannot be mathematically weighed and include all considerations, which include (non-exhaustively), medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations;
There is considerable weight or a strong presumption for the prolongation of life but it is not absolute;
… account must be taken of the pain and suffering and quality of life, and the pain and suffering involved in proposed treatment against a recognition that even very severely handicapped people find a quality of life rewarding.
Cases are all fact specific.”’
Therefore, a host of matters must all go into the balance when the judge seeks to arrive at his objective assessment of whether this treatment is in this patient’s best interests. In particular I must consider the values and beliefs of SP as well as any views she expressed when she had capacity that shed light on the likely choice she would make if she were able to and what she would have considered relevant or important. Where those views can be ascertained with sufficient certainty they should carry great weight and usually should be followed; as they would be for a person with capacity who did express such views.
Decision
Section 2 imposes a ‘diagnostic threshold’ which in this case is addressed by the medical evidence contained in the medical reports. I am satisfied on the basis of the medical evidence that SP currently lacks capacity to take a decision for herself. There is no means by which she could currently be enabled to make a decision. On the evidence currently available it is possible to say that the current lack of capacity is likely to be permanent. The lack of capacity arises from an impairment or disturbance of the brain arising out of brain injury secondary to cardiac arrest.
I approached the assessment of SP’s best interests in accordance with the framework set out above. I consider the following to be the most relevant factors.
The medical evidence is clear that SP is in a permanent vegetative state with no prospect of improvement. She will never regain capacity and cannot participate in decision making.
The medical benefits of CANH are limited to simply keeping her body alive. The person that was SP in so far as a person is their personality no longer exists and can never return. CANH cannot help SP to regain consciousness or to resume any part of the life she led. She derives no benefit from living save insofar as being alive in itself (albeit with no awareness of being alive) is a benefit.
Palliative care will reduce to a minimum any experience that SP might have of discomfort or pain as a result of CANH being withdrawn.
The evidence of her family and the nursing staff from their observations of SP is that there has been no improvement in her condition over the years and that her symptoms are consistent with her having no awareness of her surroundings. This is the experience of her closest family including her children; if she was likely to be aware of anyone it would be her children.
No one is motivated by a desire to bring about SP’s death but rather that it is not in her best interests to live like this.
SP had expressed the view to her son whilst watching a programme about a person in a PVS that she would rather die than stay in a bed for years in that condition. SP had expressed the view that if someone close to her was ill like her father had been she would turn off the life support and not leave them in that state. I accept that she had expressed a wish not to live in the sort of situation she is now in.
SP’s actions in life in particular in relation to her approach to her father’s terminal illness support the contention that she would prefer the withdrawal of life-sustaining but futile treatment and a move to palliative care only. I accept that her beliefs and values are such that they would influence her to want to have CANH withdrawn,
Her family and friends (those interested in her welfare) are unanimously of the view that having regard to her personality and how she was before the cardiac arrest that she would not want to live as she is now and that it is in her best interests for CANH to be withdrawn and palliative care implemented. The doctors and nursing staff involved in her care are of the view that this course is in her best interests.
The contrast between the full life SP led before the cardiac arrest and her existence now could not be more divergent. For a woman who loved life and lived it to the fullest she would find her current situation intolerable. Not only for her own sake but I believe also to relieve the suffering that her family endure from seeing her in this condition she would want to adopt a course which would end her and their suffering. She would not want to be a burden and would want her family to be able to move on with their lives and remember her as she was. In this case that means ending CANH and entering a palliative care programme.
She would want before leaving this life to be satisfied that her minor children were properly provided for and that nothing further could be done in her name to provide for them and their future. I accept that the family believe what has been done would meet with her approval. I also am satisfied she would endorse those arrangements and accept that there was no more she could do.
The withdrawal of CANH has been planned and will be implemented by the nursing team with input from a hospice nurse. Her family understand what it involves and the timescales. They would have preferred for it to occur in February.
In this case, the evidence satisfies me that it is no longer in SP's interests for her life to be artificially continued by CANH. I accept the evidence of the family and the clinicians. They have reached their positions after the most careful thought, placing SP at the centre of their concern, putting aside their own personal interests and concluding that she would not have wanted to go on living as she is. I have no doubt that the conclusions reached by SP’s family are in her best interests and that she would be grateful to them for having the strength to see this through. I am sure she would want her family to now be able to move on and to live their lives to the fullest – as she would no doubt have encouraged them to do.
Ultimately the decision is the courts. With inevitable regret but being clear that this in SP’s best interests I therefore conclude that CANH should be discontinued and replaced by palliative care. On the basis of the dates given by the family, taking steps now will avoid the sensitive dates the family have identified. I will therefore make the Declarations and orders sought.