IN THE MATTER OF THE MENTAL CAPACITY ACT 2005
Case No: COP 95043878
Courtroom No. 43
1st Mezzanine
Queen’s Building
The Royal Courts of Justice
Strand
London
WC2A 2LL
Before:
THE HONOURABLE MR JUSTICE MOOR
B E T W E E N:
ABERTAWE BRO MORGANNWG UNIVERSITY LOCAL HEALTH BOARD
and
CHRISTOPHER LEWIS (BY HIS LITIGATION FRIEND, CELIA KITZINGER)
MR A BAGCHI QC (instructed by NWSSP Legal and Risk Services) appeared on behalf of the Applicant
MS V BUTLER-COLE (Instructed by Bindmans LLP) appeared on behalf of the Respondent
JUDGMENT
MR JUSTICE MOOR:
This is an application that was made on 19 July 2017, for orders that it is lawful to withdraw clinically assisted nutrition and hydration for the patient Christopher Lewis on the basis that it is not in his best interests to continue to administer it. It is said that it will enable him to be free from intrusive and futile medical interventions that are not of any benefit to him and to allow him to die with dignity.
I have read the papers in this sad case with great care. It is right to say that everybody is of exactly the same view in relation to this matter. Both the adults who are relatives and friends of Christopher and the professionals who have been treating him and those asked to assess him support my making the orders sought.
Christopher lives in Wales with his mother and father. He was born on 21 May 1970 so he is 47 years old. He left school and became a technician/electrician at an electronics company. In due course, he got married. He was a sociable and fun-loving man who lived life to the full. He did, however, on one occasion say, in relation to somebody who had been diagnosed with Alzheimer's disease, that he would not want to live in that state.
On 3 November 1994, he suffered a tragic industrial accident. He was working on a machine when his overalls got caught in the machine. Unfortunately, although it is absolutely no criticism of the individual whatsoever, the person he was working with had briefly left to undertake some other operation. His overalls twisted round his neck and choked him. His oxygen was cut off for some 15 minutes and, when he was released from the machine, he went into cardiac arrest. He had extremely serious spinal injuries including an atlanto-occiptal dislocation, which I am told is usually fatal. This involved trauma to his high cervical spinal cord. The cardio respiratory arrest led to severe hypoxic brain damage. He was placed in an induced coma for some seven weeks but, when he came out of the coma, he was able to breathe for himself but in all other respects he was lacking any awareness or capacity.
He went to Rookwood Hospital Specialist Neuro Rehabilitation Unit where I am told he had a massive fit. This required a further admission to hospital and medication but he was eventually discharged home to first his wife and then his parents with support from carers.
I want to make it clear that his wife was a great support to him and she stayed with him in the hospital. She was there for him on a daily basis for some three years. She found the situation extremely difficult and, eventually, she came to the conclusion that she had to move on with her life. I am told she has not seen Christopher for some 19 to 20 years. Their marriage broke down and a decree absolute has been pronounced. She, therefore, is no longer his next of kin and in those circumstances, I take the clear view that it was not necessary to inform her of this application.
I have read a very moving statement from Christopher's mother. It is absolutely clear that Christopher’s parents and his carers have provided magnificent care for Christopher over the last 23 years. He is in a purpose-built home with them. They say that, although his spasms have become less intense, he has not, in their view, achieved any degree of awareness throughout the time he has been with them at home and every expert has agreed that he is in a permanent vegetative state.
Both his parents have come to the extremely difficult decision that it is now in his best interests to withdraw his clinically assisted nutrition and hydration which would inevitably lead to his death between 10 days and 21 days thereafter. They say that they are sure that he is not aware of what is going on around him. They add that, although his eyes move, they move in a random manner and they do not rest on an object. They say he would have hated being in this condition and they do not think that he would have wanted to be like this. They have come to the very brave but difficult decision that he gets no benefit from this life such that they support the application.
In consequence and given the unanimous position of Christopher’s family and friends, the Health Board rightly decided to consider whether this application should be made. I have read the statement from Dr Clare Turner, a consultant in palliative medicine at the Princess of Wales Hospital in Bridgend. She says there has been no improvement in Christopher's state for 23 years. He does not respond to stimuli. There is no behaviour to indicate any level of awareness. His parents strongly believe that he would not want to continue medical treatment.
There has been an agreement that, if Christopher was to get an infection, he would not be treated with antibiotics but whether that in itself would lead to his death is by no means certain. There is already in place a Do Not Attempt Cardiopulmonary Resuscitation in the event of a heart attack.
On 5 June 2017, he was admitted to Northwick Park Hospital for an assessment as to whether his diagnosis remains one of permanent vegetative state or might, possibly, be minimally conscious state. A full assessment was undertaken by Professor Turner-Stokes between 5 June and 19 June 2017 which was later reviewed by Professor Wade. One of the reasons for that was the fact that some of the carers raised possible indications that Christopher might be experiencing a degree of awareness. It was said he occasionally jumped at loud noises; moved his eyes a little in the direction of sound; became tense in the shower; woke before urinating; became frightened when ill but more relaxed when comforted; and, possibly, that he screwed up his face when his face was touched.
Professor Lynne Turner-Stokes’s report is dated 23 June 2017. It is a comprehensive report, which I accept without reservation. It tells me that the diagnosis, in 1995, of Dr Tony Clarke was one of persistent vegetative state which was confirmed again, in 1999, by Dr Clarke and Dr Stuart Butler. The Professor considered in detail all the matters raised by the carers. She undertook all the appropriate and necessary investigations. She is quite clear that these behaviours do not reflect awareness. She says they are all reflexive behaviours exhibited by many patients with PVS but she did acknowledge that the eyes moving required investigation and she did so. Her conclusion was that there was no visual tracking. There was no response to command, smiling, grimacing or the like. It is right that Christopher’s eyes were open and he would blink spontaneously but all her tests were compatible with a vegetative state and she concludes her report as follows:
'The response to sound occurs spontaneously and is just as often unrelated to sound. We consider he is in a vegetative state. There is no evidence of significant change or recovery in the last 18 years. There is no prospect of improvement in his condition and continuing life-sustaining treatment is not in his best interests. If his nutrition and hydration was not withdrawn he could live for a further 5 to7 years’.
I have already indicated that Professor Wade gave a second opinion. He is a consultant in neurological rehabilitation and his opinion is dated 25 June 2017. He also considered all the points above that were mentioned by the carers. He came to exactly the same conclusion as Professor Turner-Stokes, namely there was no evidence that Christopher was aware of his environment. His report, in fact, reaches his conclusions to the criminal standard of proof, in other words he concludes beyond reasonable doubt that Christopher is completely unaware of himself and his environment. He did not need to do so because I am hearing civil proceedings where the test is the balance of probabilities, but it gives me significant comfort that he was able to reach a conclusion that he was sure of his diagnosis. He says that Christopher is in a vegetative state. It was caused by the severe hypoxic brain damage. It is very unlikely that Christopher is in some very low awareness state. If he was, it would be probable that he would be experiencing some discomfort, if not pain and distress. The Professor referred to an obvious startle response to a clap but it was not localised. There was a spontaneous rotation of his head but his arms did not respond to pain and there was no consistent meaningful response to auditory stimuli.
The Professor, therefore, concluded that no further investigations were needed and there was no prospect of any further change. He also accepted or agreed that life expectancy would otherwise be seven years. He came to the clear conclusion that Christopher gains no pleasure or satisfaction from his life. If he has any awareness, the Professor feared it would be an unpleasant one and the Professor supports the decision to withdraw the gastrostomy feeding.
Professor Kitzinger, who is an academic and researcher and the director of the Coma and Disorders Consciousness Research Centre, has very kindly agreed to act as litigation friend for Christopher. She has told me that she has no specific position on these applications. She does not start from the position that they all should be allowed or that they all should be refused. She deals with cases on the basis of the best interests of the patient and the law as it applies in this area. That is thoroughly appropriate and I have no difficulty whatsoever with appointing her as litigation friend.
I, therefore, proceed with the matter on the following basis. The Health Board asks me to make these orders. Christopher's litigation friend supports me in doing so. Christopher's parents and friends also support the application. Christopher's doctors and experts support the application and take the view that Christopher has no awareness. I have considered in great detail the law in this area. It is, of course, a best interests decision. These matters are extremely serious. The court has to approach them with very great care. I have read the judgment of Baker J in Gloucester CCG v AB and others [2014] EWCOP at 49, which sets out in detail the law that I must apply. In Paragraph 17 from (i) to (ix), the Judge said:
“An act done, or a decision made, under the Mental Capacity Act 2005 for or on behalf of a person who lacks capacity must be done, or made, in his best interests” [Section 1 (5) of the Act].
In determining what is in the best interests of an incapacitated adult, the court must apply the relevant provisions of section 4 of the Act in particular subsections (1) to (7):
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 (a) the person’s age or appearance or (b) 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.
The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.
He must consider (a) whether it is likely that the person will at some time have the capacity in relation to the matter in question, and (b) if it appears likely that he will, when that is likely to be.
He must, so far as reasonably practicable, permit and encourage the person to participate, or improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.
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, (a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity); (b) the beliefs and values that would be likely to influence his decision if he had capacity, and (c) the other factors that he would be likely to consider if he were able to do so.
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; (b) anyone engaged in caring for the person or interested in his welfare; (c) any donee of a lasting power of attorney granted by the person, and (d) any deputy appointed by the court.”
Where a person is unable to consent to medical treatment, it is lawful to provide the patient with treatment if it is necessary and in his best interests: Re F (Mental Patient: Sterilisation) [1990] 2 AC 1.
The focus is not on whether it is in P’s best interests to withhold treatment but rather on whether it is in his best interests to give or continue the treatment: Aintree University Hospitals NHS Foundation Trust v James [2014] 1 AC 591 at paras 18-22 by Baroness Hale of Richmond.
In making a decision concerning life sustaining treatment, the court must have regard to the relevant articles of the European Convention for the Protection of Human Rights and Fundamental Freedoms, in particular Articles 2 and 8.
“Article 2…imposes a positive obligation to give life-sustaining treatment in circumstances where, according to responsible medical opinion, such treatment is in the best interests of the patient but does not impose an absolute obligation to treat if such treatment would be futile”: per Butler-Sloss P in NHS Trust A v M [2001] Fam 348 at para 36.
Article 8 encompasses, inter alia, considerations of a patient’s personal autonomy and quality of life. In Pretty v UK [2002] 35 EHRR 1 at para 65, the European Court of Human Rights observed:
“The very essence of the Convention is respect for human dignity and human freedom. Without in anyway negating the principle of sanctity of life protected under the Convention, the Court considers that it is under Article 8 that notions of the quality of life take on significance. In an era of growing medical sophistication combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advance physical or mental decrepitude which conflicts with strongly held ideas of self and personal identity.”
When assessing best interests, it would normally be appropriate to adopt the “balance-sheet” approach recommended by the Court of Appeal in Re A (Male Sterilisation) [2000] 1 FLR 549 at page 560 Thorpe LJ.
However, in cases of a VS, the balance sheet approach is not normally appropriate because all the factors that are relevant normally fall on one side of the scale.
The fundamental principle derived from the case of Airedale NHS Trust v Bland [1993] AC 789 is as identified by Lord Goff of Chieveley at page 869:
“Here the condition of the patient, who is totally unconscious and in whose condition there is no prospect of any improvement, is such that life-prolonging treatment is properly to be regarded as being in medical terms useless…for my part I cannot see that medical treatment is appropriate or requisite simply to prolong a patient’s life, when such treatment has no therapeutic purpose of any kind, as where it is futile because the patient is unconscious and there is no prospect of any improvement of his condition. It is reasonable also that account should be taken of the invasiveness of the treatment and of the indignity to which, as the present case shows, a person has to be subjected if his life is prolonged by artificial means.”
I have also considered in detail the decision of the Supreme Court and the analysis of Baroness Hale of Richmond in Aintree University Hospitals NHS Foundation Trust v James [2013] EWCA 67 at paragraphs 20 to 22:-
‘20. Those cases aside, it was recognised by the House of Lords in Re F (Mental Patient: Sterilisation) [1990] 2 AC 1 that where a patient is unable to consent to treatment it is lawful to give her treatment which is necessary in her best interests. Section 5 of the Mental Capacity Act 2005 now provides a general defence for acts done in connection with the care or treatment of a person, provided that the actor has first taken reasonable steps to establish whether the person concerned lacks capacity in relation to the matter in question and reasonably believes both that the person lacks capacity and that it will be in his best interests for the act to be done. However, section 5 does not expressly refer both to acts and to omissions, the giving or withholding of treatment. The reason for this, in my view, is that the fundamental question is whether it is lawful to give the treatment, not whether it is lawful to withhold it.
In Bland, Lord Goff (with whose judgment Lord Keith and Lord Lowry expressly agreed) pointed out that "the question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of treatment" (p 868). To the same effect was Lord Browne-Wilkinson, at p 884:
". . . the critical decision to be made is whether it is in the best interests of Anthony Bland to continue the invasive medical care involved in artificial feeding. That question is not the same as, 'Is it in Anthony Bland's best interests that he should die?' The latter question assumes that it is lawful to perpetuate life: but such perpetuation of life can only be achieved if it is lawful to continue to invade the bodily integrity of the patient by invasive medical care."
Hence the focus is on whether it is in the patient’s best interests to give the treatment, rather than on 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 that they have acted reasonably and without negligence) the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it’.
I have come to a very clear conclusion and that is that I should approve the orders that I am being asked to approve. There is a unanimous diagnosis and prognosis of vegetative state, from two highly experienced and eminent consultants, both of whom have examined Christopher and reviewed his history. When there is a diagnosis of a vegetative state as was articulated in Bland, it is not usual to apply a balance-sheet approach because there are simply no positive factors relevant to Christopher to place in the scales. Here the clinicians and family members alike agree that Christopher derives no benefit from his life and potentially could suffer from ongoing treatment. From the best evidence available, it seems that the withdrawal of life-sustaining treatment is likely to accord with Christopher's values and wishes as described by his parents and it certainly accords with their own very clearly articulated views.
I am, therefore, clear that I should deal with this application today, make the orders and declarations sought to enable arrangements to be made for Christopher to move to a hospice and to die there with dignity. That is in his best interests. It is overwhelmingly in his best interests and I approve those orders.
I want to thank all those involved very much for the great help they have given me and the careful and anxious consideration that they have given to this difficult and sensitive matter.
Postscript
The court has been informed that the clinically assisted hydration and nutrition was withdrawn in accordance with the order and Christopher subsequently passed away peacefully and with dignity.
End of Judgment
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