An oral advance decision to refuse life-sustaining treatment?

Newcastle-upon-Tyne Foundation Trust v LM [2014] EWHC 454 (COP)  (Peter Jackson J)

Summary

This case concerns the lawfulness of withholding blood transfusions from a gravely ill Jehovah’s Witness.   The woman in question, LM, had a background history of depression and paranoid schizophrenia and in the past had received compulsory treatment. She had been a Jehovah’s Witness since the 1970s at least.  In the middle of January 2014, LM was seen by a consultant psychiatrist, who had known her for seven years. He felt that her mental health was as good as he had known it for a number of years.  On 6 February 2014, LM was admitted to hospital by ambulance, having been found wandering and confused outside her home. She had a number of bruises, suggesting recent falls. From the outset of her admission it was known that she was a Jehovah’s Witness and her notes were marked that she was not to receive blood products in any circumstances.  Over the days following her admission, LM made some improvement, but on 11 February, she was found to be bleeding from a large duodenal ulcer. Tests revealed a falling and dangerously low haemoglobin level, the lowest figure being 37 against a normal measure of 120-150 and the figure at the time of the hearing being 47.  On 11 February, a senior nurse from the liaison psychiatry team assessed LM. He found no evidence of active psychotic illness but some mild confusion. In general, she was not psychiatrically unwell and her presentation appeared appropriate.  On 12 February, LM was seen by two doctors in the gastroenterology team. She told them that she was adamant that she would not want treatment with any blood products. They felt that she had full capacity to make this decision with an awareness of the consequences.  A form to complete an advance decision complying with the provisions of s.24 MCA 2005 was available at the hospital, but it does not appear that it was offered to her, and there was no record of her wishes other than that recorded in the notes.

On the afternoon of 13 February 2014, LM’s condition markedly deteriorated. She was admitted to the High Dependency Unit under the care of Dr C. By this time her physical condition had deteriorated to the point that she required intubation, ventilation and sedation and clearly lacked capacity to make or communicate a decision.

The Trust made an application for a declaration that it would be lawful to withhold blood transfusions from LM.  They did so on the basis that LM had clearly made her wishes known even with knowledge of death. Alternatively, if it was a matter of best interests, the Trust did not wish to act against her wishes, being concerned to respect her individual dignity.

The matter came before Peter Jackson J on 18 February in the urgent applications list, at a hearing conducted by video-link from Newcastle, with evidence being given by Dr C.  Also present in Newcastle were Mr R, an elder of the Jehovah’s Witnesses who had known LM since 1975, and Mr P, the Chairman of the Hospital Liaison Committee for Jehovah’s Witnesses. In London, the hearing took place in open court and was attended by a representative of the Press Association.

By the stage that the matter was before Peter Jackson J, profound anaemia was significantly compromising LM’s survival prospects.  The medical view was that LM might not survive for as long as a day in the absence of a blood transfusion and that even if one was given, she might still die. As Peter Jackson J noted: “[a] decision had to be taken there and then.” He took the view that it was not practicable or necessary for a litigation friend to be appointed.  He granted the application at the end of the hearing, declaring that “It shall be lawful for the doctors treating LM to withhold blood transfusions or administration of blood products notwithstanding that such treatments would reduce the likelihood of her dying and might prevent her death.

LM died a few hours before the judgment giving Peter Jackson J’s reasons was to be handed down on 26 February 2014.   This gave rise to a question about reporting restrictions to which I return.

In his reasons for granting the application, Peter Jackson J found that:

Prior to the afternoon of 13 February, LM had the capacity to decide whether to accept or refuse a blood transfusion. There is no evidence that her underlying mental illness rendered her unable to make a decision (MCA s.2(1)). The presumption of capacity (s.1(2)) was not displaced and the criteria for capacity (s.3) were on the balance of probabilities met. I am satisfied that LM understood the nature, purpose and effects of the proposed treatment, including that refusal of a blood transfusion might have fatal consequences.”  Further, “[t]he decision taken by LM prior to her loss of capacity was applicable to her later more serious condition. There was no difference in kind and I am satisfied that she intended her decision to be effective in the circumstances that subsequently arose” (paragraph 22).

He therefore found that “LM made a decision that the doctors rightly considered must be respected” (paragraph 22).

In the alternative, Peter Jackson J found, “if LM had not made a valid, applicable decision, I would have granted the declaration sought on the basis that to order a transfusion would not have been in her best interests. Applying s.4(6) in relation to the specific issue of blood transfusion, her wishes and feelings and her long-standing beliefs and values carried determinative weight. It is also of relevance that a transfusion might not have been effective to save her life” (paragraph 23).  As he noted “[t]he right to life (Art. 2 ECHR) is fundamental but it is not absolute. There is no obligation on a patient with decision-making capacity to accept life-saving treatment, and doctors are neither entitled nor obliged to give it” (paragraph 24).

As regards the question of whether the reporting restriction order that the Trust applied for on 24 February (i.e. two days before LM died) should be granted.   As  Peter Jackson J noted “[t]he court has jurisdiction to make an order during the lifetime of a patient that will continue to have effect after death unless and until it is varied: Re C (Adult Patient: Restriction of Publicity After Death [1996] 1 FCR 605. The situation here is different in that the patient is no longer alive. The unusual circumstances raise interesting questions about the court’s jurisdiction to restrict the reporting after a person’s death of information gathered during proceedings that took place during her lifetime(paragraph 26).

Whilst he had invited legal submissions upon the question, Peter Jackson J took the entirely pragmatic step of making “an order that preserves the situation until the time comes when someone seeks to present full argument on the question. I will say no more than that for the present” (paragraph 27).  He therefore granted a Reporting Restriction Order on materially identical terms (it would appear) to that which he would have granted had LM still been alive.

Comment

It may be that the judgment is overly compressed in the key part, but on its face it would appear that Peter Jackson J would appear to have accepted that LM’s decision to refuse blood transfusion was a binding advance decision notwithstanding the fact that: (a) it related to treatment that must (in the context of her medical condition at the time) be considered life-sustaining; and (b) was made orally, rather than in writing and witnessed, as is required by the terms of s.25(5)-(6) MCA 2005.

This would be a striking conclusion.   It would also contrast starkly with the decision in W v M [2011] EWHC 2443 (COP).  In that case, the undisputed evidence before the Court was that M had, before she contracted viral encephalitis leading, ultimately, to her being in an Minimally Conscious State, made statements to the effect that she would not wish to live in a nursing home, would not wish to be dependent on others, if in declining health “would want to go quickly,” and expressed views to the effect that it would be better to allow Tony Bland to die when reports about his case appeared on the television (see paragraph 230).  Baker J, however, held that it would be wrong to attach significant weight to these statements: “[g]iven the importance of the sanctity of life, and the fatal consequences of withdrawing treatment, and the absence of an advance decision that complied with the requirements previously specified by the common law and now under statute” (paragraph 230).

The two cases can undoubtedly be distinguished on the facts, in that it is clear that LM had considered the question of blood transfusions with far greater care than M had ever considered the possibility of the withdrawal of artificial nutrition and hydration or whether she would wish such treatment to be withdrawn if in a minimally conscious state.   As a matter of English law, however, either an advance decision to refuse life-sustaining treatment is valid and applicable (a necessary precondition of applicability being compliance with ss.25(5) and (6) MCA 2005) or it is not, and (on its face) both LM and M were, legally, in the same boat.

The approach adopted by Peter Jackson J sits very comfortably with the Supreme Court’s emphasis in Aintree upon placing very significant weight upon what could reliably identified to be the views of LM (see also the discussion below of the case of Re X, Y and Z).  But by classifying LM’s views as determinative and – hence – a de facto advance decision it might be said that Peter Jackson J took one step further than he was permitted by the current state of the law (albeit a step that the Committee on the CRPD would undoubtedly welcome).

It may be that, on a proper analysis, the position before Peter Jackson J was that LM was not making a decision to refuse a blood transfusion at some future point, but rather (a) was making a decision to refuse a blood transfusion at the point of that decision which was intended to have a continuing effect; or (b) was making a decision whilst capacitous that she wished to refuse a specific blood transfusion at a fixed point in the future.

As to (a), whilst LM would have been able to refuse present treatment whilst capacitous without any need to commit such refusal to writing:

  1. It is not immediately obvious from the judgment that this was the case, because it does not appear that she was being offered, and was refusing, blood transfusion prior losing capacity. Rather, it appears that her physical condition significantly deteriorated, leading both to a loss of capacity and to a position where the doctors would, all other things being equal, would have contemplated administering a blood transfusion: see paragraphs 13-4;
  2. Such ‘continuing refusals’ in the case of life-sustaining treatment are not altogether easy to square with the wording of ss.24 and 25 MCA 2005.

As to (b), there must be a question as to the time-lag that is required between the point at which the question is asked of the patient whether they consent and the point at which it is proposed to carry out the treatment before the decision can be said to be an ‘advance’ decision.  A (possibly ridiculous) hypothetical example may make the point.   Imagine a patient being scheduled to undergo a surgical procedure at 10:00 and the surgeon came to ‘consent’ the patient at 9:00 am.  If the patient refused but then fell from the bed at 9:05, thereby rendering themselves unconscious, one suspects that the surgeon would find themselves on the receiving end of some awkward questions if they carried out the procedure at 10:00, whether or not the patient had committed their views to paper in the form of an advance decision.    As far as we know, this question has not been canvassed in a reported case, but in any event it is not immediately obvious that the facts of Ms LM’s case could fit such an approach, given that the blood transfusion was not (as far as we can see) to be provided at some specific point shortly after 13 February, but rather was – properly – to form part of the treatment options for the management of her clinical condition.

It will be interesting to see how future judges analyse this decision when it is brought to their attention by the representatives of patients or their families in a similar position to that of Ms LM.

The decision is also of interest as regards the approach adopted to the RRO: the pragmatic solution adopted by Peter Jackson J would appear to be entirely sensible and would also accord with the fact that (as per Re C), there would be a potential effect on medical and other staff’s care of a patient the subject of an application to the CoP if they knew that, with the death of the patient, their anonymity might be lost; a factor which would also apply (where relevant) to the family members of the patient.

 

 

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