England and Wales Court of Appeal (Civil Division) Decisions

IN THE SUPREME COURT OF JUDICATURE
IN THE COURT OF APPEAL (CIVIL DIVISION)
ON APPEAL FROM THE HIGH COURT FAMILY DIVISION
(MR JUSTICE COLERIDGE)

		Royal Courts of Justice Strand London, WC2
		17 September 2004

LORD JUSTICE BROOKE:

1. This is, as so often happens in these life and death cases, an intensely distressing case. Formerly it is an appeal by Mr H and Miss PH from a judgment of Mr Justice Coleridge today, which had the effect of permitting the claimant Trust to re-insert a percutaneous gastrostomy tube (PEG) into KH in order to allow nutrition to continue on a permanent basis. KH herself appears by her litigation friend, who is the Official Solicitor. The Official Solicitor supported the application of the Trust in the court below and supports the Trust's opposition to this appeal. Mr H is the brother of KH and P is one of her daughters.
2. So far as the facts are concerned, KH is now 59. She was born on [a date in] 1944. She has suffered from multiple sclerosis since the middle of the 1970s. There was evidence before the judge, about which I think there was no dispute, that for all practical purposes she has been incapable of taking informed decisions for herself for at least 20 years. Ten years ago her condition had deteriorated to the extent that she had to be received into a local nursing home, which has been her home ever since except for her admissions to hospital. Her condition has been such that she has required feeding by PEG for the last five years and she is now in a pitiful state. Most of her bodily functions have ceased to work because of the insidious effect of her illness, and she requires 24-hour care to enable her to survive. Her swallowing is unsafe; she is doubly incontinent; she is conscious but not much more than that; she cannot speak more than the odd word; she is disorientated in time and place; and she now recognises nobody, not even those who are closest to her in her family.
3. KH was admitted to her local hospital in the early hours of the morning on 30 August. Her PEG tube had fallen out the previous day. Although her daughter has expressed her own belief as to what happened, the judge, after hearing evidence which included evidence of one of the doctors at the hospital who had spoken to the staff at the nursing home, concluded that the PEG system had been functioning without any problems until 29 August when it became dislodged in circumstances which are not wholly clear but which were probably accidental. It is quite impossible for this court to interfere with that view of the judge who heard the evidence.
4. When she came to the hospital one of the consultant physicians felt that the PEG tube should be re-inserted, but in the meantime hydration was maintained with an intravenous drip. When it became clear that the family did not wish the tube to be re-inserted, she was transferred from the medical admissions ward to another ward of the hospital when she came into the care of Dr G, a consultant physician. Dr G has been responsible for her care since then. It is her wish to have the PEG reinstated. We were told by Mr Lloyd that the evidence was that it was the unanimous view of those responsible for her care that it should be reinstated. As I have said, the Official Solicitor supports the Trust's application. These proceedings have come about because when Dr G first met PH on 2 September to discuss the question of re-insertion of the tube it became clear to her that the family were resistant to this proposal. The attitude of the family, to which I will refer, is in effect unanimous.
5. Dr G in a written report said that on 2 September KH c could open her eyes to speech. She could obey one-step commands such as being told to stick her tongue out. She made occasional single-word, seemingly appropriate, answers to questions. For instance, if she was asked "How are you?" she would say "Fine". She had marked spasticity in all limbs. There was no sign of any concurrent infection. The only acute problem was the lack of a PEG tube. She was not orientated in time, person or place. It is completely common ground that she is not capable of giving an informed consent. The view of Dr G - confirmed by Dr W, a consultant psychiatrist - is that KH is not at all likely to develop capacity to make personal decisions for herself in the future. That statement of her condition is totally shared by the family.
6. When it became clear that her family were resistant to the idea of the PEG being introduced, the hospital made inquiries of different members of the family. Their evidence went along these lines. KH's other daughter T, who was in Portugal at the material time, said that she was her mother's carer just before she went to the nursing home, when she was 23 years old. She was tucking her into bed one night and told her about the home. Her mother said, "We cannot afford it", but her daughter said, "Don't worry about that". Her mother said, "I don't want to be kept alive by machines." Her daughter then started sobbing and kissed her goodnight.
7. Mr H says of his knowledge of his sister's state at that time that it is debatable if she really knew what she was saying 10 years ago.
8. Mrs N has known KH since 1976. They had children at the same school and lived nearby. They soon became great friends and have remained great friends through the years. They were both divorced, and they had much in common. She was only the second person to whom KH passed the information that multiple sclerosis had been confirmed. At that early stage KH was capable of making sensible decisions. Mrs N said that in the next years they talked a great deal about death and about never wanting to have anything but the best quality of life. KH had said over and over again that she would never be a burden to the girls if she could not look after herself. If she had to go to hospital and the time came when she could no longer recognise the girls, she did not want to be kept alive. She said this over and over again. She said this very strongly when she became more dependent on the nursing staff in the nursing home. Mrs N said they agreed they would always look after each other's children, and she has had constant contact with both KH's daughters over this distressing time. She had no doubt whatsoever that what KH would want now was to be allowed to die and be at peace.
9. Mrs N gave evidence at the hearing, and the judge recorded, very briefly, the effect of the evidence that he received from both the present appellants and from Mrs N. He said: "No one who heard them give evidence and argue their cause yesterday could have been anything but profoundly moved and impressed. To advocate for the speedy death of a very near and beloved relative is not a task one would wish upon one's worst enemy. The sincerity and passion with which they advanced their points has made my task horribly difficult."
10. The judge's concern about the present state of KH is reflected by the fact that, in giving leave to appeal, he said this: "I have given leave to appeal because this is such a borderline decision. But for the recent case law, I would have refused the Trust's application. The family's case is as strong as it could be about the patient's horrible existence and wishes. I think therefore they have an arguable point."
11. So far as the rest of the family's evidence is concerned, T described what happened when she went to the hospital five years ago when the PEG was fitted. She feels very strongly that she did not really understand the matter to which she was consenting. She felt it ought to have been explained and discussed with the family before a decision was taken. She wishes she could take back that consent. She does not believe it is in the best interests that the PEG should be there. Her mother has no quality of life, and has pain and suffering, and does not want to be kept alive. That evidence has been echoed by other members of the family. The hospital authorities have spoken to three or four other members of the family. In other words, it is a case in which a wonderful, caring family are unanimous that KH would wish to die in these circumstances. I have said that these cases are always very distressing.
12. English law places a very high value on life. The value that English law places on life is now reiterated by Article 2 of the European Convention on Human Rights - which is, in effect, part of our law - which recites that everyone's right to life shall be protected by law. About 20 years ago there was a big debate about what the law should be when somebody was incapable of taking decisions for themselves and their doctors wished to treat them. There had not been very much thinking about these problems in this country. There were two rival schools of thought. One was that the decision should be taken by an appropriate body in the best interests of the patient. The other was a concept of substituted choice, which applied in certain jurisdictions overseas, by which the court would do its best to put itself in the shoes of the patient and decide what the patient would have chosen if he/she had been capable of taking the decision. This debate was only finally resolved in 1990 in Re F [1990] 2 AC 1 when the House of Lords came down in favour of the "best interests" test.
13. The House of Lords invented a procedure by which if there was a question of doctors doing anything that would amount to a trespass, on an adult patient who was incapable of taking informed decisions for himself or herself, interested persons could come to the court for a declaration as to whether what was proposed was lawful. The test was to be - is it in the best interests of the patient? Since then there have been a good many decisions, either in the Family Division or, less frequently, in this Court, in which these principles have been fleshed out.
14. In a case like this there are three tests that have to be applied. First, is the patient capable of taking an informed decision for herself? I need not pause on that test. It is agreed that KH is not so capable and has not been so capable for many years.
15. The next question when what is being proposed amounts to a trespass is whether there is a clear exposition of the patient's wishes before she became incapable, which is capable in law of amounting to a direction as to how she wishes to be treated when no longer capable of taking decisions for herself. The logic behind this is that the important principle of personal autonomy means that each one of us, certainly when we become an adult, are capable of saying no to any infringement of our bodily integrity. The insertion of a PEG tube would certainly be an infringement of KH's bodily integrity. If we say this clearly at a time when we are capable of expressing our wishes, then that clear declaration is binding on those who would have the responsibility for our care when we are no longer competent. But the declaration has to be clear and it has to be referable to the particular circumstances.
16. In Re T: Adult Refusal of Treatment [1993] Fam Div 95 Lord Donaldson MR said at page 103 C:

"An anticipatory choice ..... if clearly established and if applicable in the circumstances - two major ifs - [will] bind the practitioner."

At page 112 E he explained the principle in this way:

"..... a conflict between two interests, that of the patient and that of the society in which he lives. A patient's interest consists of his right to self-determination, his right to live his own life as he wishes even if it will damage his health or lead to his premature death. Society's interest is in upholding the concept that all human life is sacred and it should be preserved if at all possible. It is well established that in the ultimate the right of the individual is paramount. But this merely shifts the problem where the conflict occurs and calls for a very careful examination of whether and, if so, the way in which the individual is exercising that right. In case of doubt that doubt falls to be resolved in favour of the preservation of life. For if the individual is to override the public interest he must do so in clear terms."

The important words are that the choice has to be clearly established and applicable in the circumstances. Those are the particular circumstances in which a particular issue arises.

17. The judge adopted in his judgment the skeleton argument of counsel who appeared for the NHS Trust in relation to the effect and validity of the views expressed by KH. What is said in that skeleton argument is this:

"The evidence provided by several family members and friends is in terms that [KH] would only wish to remain alive so long as she enjoyed a reasonable quality of life. They advance with some force the argument that she would not have regarded her current position as providing any quality and in those circumstances would, if she were capable and competent, have chosen not to in-insert the PEG.

Without exception all of the statements provided by the family and friends share these features:

(a) the conversations occurred many years ago, almost certainly all occurred before [she] was admitted to the Home in 1994;

(b) none of them dealt specifically with the withdrawal of feeding;

(c) there were no medically qualified witnesses who discussed with her the ramifications of slowly starving to death over a two to three week period;

(d) there is no suggestion from the evidence adduced that [her] alleged comments were the result of a considered and balanced decision taken after full consideration of all relevant matters."

18. Counsel had then summarised the law as stated in HE v A Hospital NHS Trust [2003] 2 FLR 408 by Mr Justice Munby. Paragraphs 23, 24 and 34 of that judgment are summarised. Among other things, Mr Justice Munby said: "Where, as here, life is at stake, the evidence must be scrutinised with a special care. The continuing validity of the advance directive must be clearly established by convincing and inherently reliable evidence."
19. What Mr H has said to this court, as he said it to Mr Justice Coleridge, is this: "We do have this strong body of evidence; my sister made her views completely clear; we know what she wants and she expressed herself before she became incapable of taking decisions for herself." The trouble about that approach, as a matter of law, is that she has not catered for every possible eventuality. Certainly she has catered, probably effectively, for situations where she would not wish artificial means of preventing her from submitting to an infection or what were formerly used as life support machines.
20. What is argued by Mr Francis on behalf of the Trust and by Mr Lloyd on behalf of the Official Solicitor is that the matter that has to be determined now is whether, in all the circumstances, when she became incapable Mrs H would choose what would be a distressing form of death by starvation over a period of two to three weeks as opposed to remaining alive, not in pain or particular discomfort, and that she never addressed her mind to that particular choice. Mr Francis, who has great experience in this area of the law, has told us that there has been no case in the books to date in which the court has sanctioned the withdrawal of treatment which is simply providing, in effect, the equivalent of food and drink for anybody other than somebody in a PVS state (in other words, someone who has no feeling of anything whatsoever). He reminded us of the evidence that Dr G gave. Mr Lloyd told us that Dr G told the judge that if left in peace she appeared to be comfortable, although her daughter PH told us that she was not entirely comfortable at all times.
21. I am of the clear view that the judge was correct in finding that there was not an advance directive which was sufficiently clear to amount to a direction that she preferred to be deprived of food and drink for a period of time which would lead to her death in all circumstances. There is no evidence that she was aware of the nature of this choice, or the unpleasantness or otherwise of death by starvation, and it would be departing from established principles of English law if one was to hold that there was an advance directive which was established and relevant in the circumstances in the present case, despite the very strong expression of her wishes which came through in the evidence.
22. One is then left with stage 3, which is where the patient's best interests lie. The way that the judge put it was in these terms (I quote from a draft from which he read his judgment; we do not have a transcript):

"Although I have no doubt at all that she said what the relatives say she said in this regard the expressions [were] not of [the] quality or focus to constitute an advance directive. However, that is not [to] say they should be ignored. I have them well in mind when looking at the wider question of her best interests."

After referring to the propositions of law that had been advanced by the Official Solicitor, the judge said:

"The relatives are unanimous; their case is [that] their sister's or mother's life is intolerable now. Her condition is such that she recognises nobody and relatives visit [her] infrequently because it is too distressing to see her in that state. So it is a vicious circle. She is not being allowed to die with dignity and her wishes and the genuine views as I accept of the family should prevail. As her daughter ..... put it, it is not ending her life because she does not have a life at all anyway.

I have, as I have already emphasised, found this to be an extraordinarily difficult decision. I have listened with the greatest care and sympathy to the family's pleas, but in the end I find the law as it presently stands precludes me from acceding to them. The Court cannot in effect sanction the death by starvation of a patient who is not in a PVS state other than with their clear and informed consent or where their condition is so intolerable as to be beyond doubt. This patient is sufficiently conscious and sentient to appreciate and experience the effects of death by starvation over weeks and so to adopt Munby J, I cannot say that life-prolonging treatment (in this case feeding via the PEG) would provide no benefit. I appreciate that it is a very fine balance in this case but death by this route would in my judgment be even less dignified than the death which she will more probably face at some time in the more distant future. I am very sorry for the family, but in my judgment the law has not yet reached the stage where their arguments can rule the day."

23. The judge was referred, and the court today has been referred, to the helpful summaries of the law included the judgment of Mr Justice Munby in R (on the application of Burke) v The General Medical Council [2004] EWHC 1879 (Admin). I do not think it is necessary, for the purposes of this judgment, to read into this judgment the passages to which we have been referred. This is an oral judgment delivered immediately after the hearing of the appeal. The time is now 5.40 pm, and it is sufficient to say that we were referred to paragraphs 88 to 90, paragraphs 98 to 108, and paragraghs 112 to 113. If the House of Lords in 1990 had come down in favour of substituted choice so that the law of England was that the court should put itself in the shoes of the patient and do its best to make a choice now, then we would be applying a different test, and one which might well be more favourable to the family than the test which the law requires us to apply.
24. Mr H, who has addressed us with great clarity and dignity, referred us in particular to the quotation from paragraph 1.2 of the British Medical Association's Guidance for Decision Making, quoted in paragraph 112 of Mr Justice Munby's judgment, in which the British Medical Association say:

"Where, however, the disability is so profound that individuals have no or minimal levels of awareness of their own existence and no hope of recovering awareness ..... the question arises as to whether continuing to provide treatment aimed at prolonging that life artificially would provide a benefit to them."

He said that his sister no longer had any of the qualities which are referred to in that guidance.

25. As Mr Justice Munby said, after referring to that guidance, the test which the law applies is "best interests". The touchstone of best interests in this context is intolerability. Mr Justice Munby came to that conclusion after reciting, in particular, the judgments in this court in Re J (a Minor) (Wardship: Medical Treatment) [1991] Fam 33. No doubt, Mr Justice Munby had in mind what Lord Justice Taylor said at page 55:

"Despite the court's inability to compare life affected by the most severe disability with death, the unknown, I am of the view that there must be extreme cases in which the court is entitled to say life that this treatment would prolong would be so cruel as to be intolerable."

Lord Justice Taylor referred to a case of extremely painful treatment causing continuous agony or such continuous sedation as to lead to there being no conscious life at all. He concluded that part of his judgment by saying that the test must be whether "the child in question is capable of exercising sound judgment or would consider the life tolerable."

26. Mr Francis' submissions have convinced me that there is a danger of detecting a substituted choice test in this passage. Normally the approach that the law should adopt is to determine whether, in the judgment of the court, the continuation of life would be intolerable. In one of the cases Lord Justice Thorpe has suggested that in these best interests cases the law should draw up a balance sheet, putting the advantages on one side and the disadvantages on another.
27. The way that the judge came to the conclusion was that in KH's present state he was unable to say that life prolonging treatment would provide no benefit, and that death by, in effect, starvation would be even less dignified than the death which she will face in due course if kept artificially alive for more weeks or months or possibly years.
28. The judgment is not ours to make. This is a court of appeal. The balance is for the judge of first instance to assess, and this court can only interfere on well recognised grounds if the judge has misdirected himself in law or there are reasons why we are entitled to fault the exercise of the judgment he concluded.
29. The judge, having rightly put on one side the question whether there was a legally binding advance directive, looked, on the one hand, at the consequences of withdrawing nutrition and the effect this would have and, on the other hand, at the continuance of a life in which there is some feeling of pain, some sensation and some slight ability to answer questions. He came to the conclusion that it was in the best interests of the patient to accede to the unanimous wish of those who are responsible for her treatment.
30. As I have said, the Official Solicitor supports this application. These cases are always agonisingly difficult. Nobody would wish to be in the position in which the members of this family find themselves. But judges have to apply the law as they find it. English law, as it stands at present, places a very heavy burden on those who are advocating a course which would lead inevitably to the cessation of a human life. In my judgment, it is impossible for this court to interfere with the judge's judgment.
31. Accordingly I would dismiss this appeal.
32. LORD JUSTICE CLARKE: It was difficult to listen to PH, Mr H or Mrs N without having the greatest sympathy for both KH and the whole family. But, in my opinion, the judge was right for the reasons he gave. I, too, would dismiss the appeal for the reasons given by Lord Justice Brooke.
33. LORD JUSTICE MAURICE KAY: I entirely agree that the appeal must be dismissed. I also express my sympathy with the family in the tragic and difficult circumstances in which they find themselves. No one can doubt the sincerity of their view or the dignity with which it has been expressed.
Order: Appeal dismissed with identification restrictions. A transcript of judgment to be supplied at public expense to the family.