Our advance directives about how we should die should be respected – Court of Protection

brain-in-head

UPDATE | The 1COR event which this post previously referred to is now full, so please do not turn up unless you have registered.

Sheffield Teaching Hospitals NHS Foundation Trust v TH and Anor [2014] EWCOP (22 May 2014) – read judgment

In a careful and humane judgment, the Court of Protection has demonstrated that the law is capable of overlooking the stringent requirements of the conditions governing advance directives, and stressed that a “holistic” view of the patients’ wishes and feelings must be adopted, if those point to the withdrawal of life saving treatment.

Background

TH was admitted to the Northern General Hospital in Sheffield earlier this year. His general health revealed a background of known alcohol excess, and he had suffered neurological damage involving seizures and severe depression of consciousness.

 

At the point of admission he had a reduced Glasgow coma score of just 3 out of 15,  the lowest possible score.  He was intubated for intravenous feeding, and was doubly incontinent. At the time of this hearing his neurological condition had shown no signs of recovery and there was a consensus between his treating doctors that he remained under “a serious neurological disability”. According to one of the neurologist experts, there was no cure for this condition and MR scans showed that the brain had suffered catastrophic damage from which it would not recover. TH’s condition was “permanent and irreversible”. The real question in this case was whether it was in TH’s best interest to receive nutrition and hydration as well as medication, or, whether, in Hayden J’s words
“he should quite simply be permitted to bring his life to an end in the manner and timescales of his choice.”

The key issue for the court to determine was whether TH had actually made an advance statement that bound his clinicians and carers. The Mental Capacity Act is concerned with enabling the court to do for the patient what he could do for himself if he had full capacity:

The MCA emphasises the need to see the patient as an individual with his own values, likes and dislikes , and to consider his best interest in an holistic way. (Baroness Hale, Aintree University Hospital NHS Foundation Trust v James [2013] 3 WLR 1299)

The problem is that the letter of the law, spelt out in Sections 24 and 25 of the MCA, suggests that an advance directive may not be valid or applicable to the treatment under consideration if

(a) that treatment is not the treatment specified in the advance decision,
(b) any circumstances specified in the advance decision are absent, or
(c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them.

The medium term objective was to transfer TH’s care from the hospital to a specialist nursing home. TR, the second respondent and TH’s partner for twenty years, opposed that. Though she was full of respect and genuine admiration for TH’s treating clinical team she believed that TH would loathe his present situation. She told the court that he would find it “a violation of his dignity”.

The Court of Protection’s decision

Hayden J found that TR  had adequately represented not only TH’s words and wishes to the court, but also his feelings, “too frequently conflated as the same concept, but in truth entirely different”

Despite the fact that the stringent requirements of Section 24 MCA had not been met, and that therefore it could not be said that there had been an advance decision to refuse treatment, the judge was minded to attach more weight to the evidence from his friends and family, who had “ transported TH from his hospital bed, in his minimally conscious condition, and their obvious love and affection for him has brought his character and personality to this court.”

The picture they drew of TH was of an intelligent and talented man who had always avoided authority, and would have loathed the prospect of being subject to hospital coercion. While he was suffering from ataxia, but still fully able to make informed decisions, he declined all support and opposed any intervention from outside services. He was frustrated and angry with his disabilities, but, as he was never going to improve, he avowed that “he would rather die young and drink to the end”. The judge was left in “no doubt at all”  that TH would wish to determine what remains of his life in his own way not least because that is the strategy he had always both expressed and adopted.

Privacy, personal autonomy and dignity have not only been features of TH’s life, they have been the creed by which he has lived it. He may not have prepared a document that complies with the criteria of section 24, giving advance directions to refuse treatment but he has in so many oblique and tangential ways over so many years communicated his views so uncompromisingly and indeed bluntly that none of his friends are left in any doubt what he would want in his present situation.

Hayden J concluded by expressing surprise at the adherence by the Official Solicitor’s team to the strict letter of the law, against TH’s wishes regarding his treatment:

If I may say so, they have not absorbed the full force of Baroness Hale’s judgment in Aintree and the emphasis placed on a ‘holistic’ evaluation when assessing both ‘wishes and feelings’ and ‘best interests’. They have, in my view, whilst providing great assistance to this court in ensuring that it has the best available medical evidence before it, focused in a rather concrete manner on individual sentences or remarks. To regard the evidence I have heard as merely indicating that TH does not like hospitals as was submitted, simply does not do justice to the subtlety, ambit and integrity of the evidence which, in my judgment, has clearly illuminated TH’s wishes and feelings in the way I have set out.

The judge adjourned making a declaration on the issue until the results of more detailed neurological tests were before the court.

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