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Judges to hear applications to withdraw life-sustaining treatment in public

29 September 2011

Cases concerned with the withdrawing of life-sustaining treatment from patients in a minimally conscious or vegetative state should all be heard by the Court of Protection and should be heard in public, a senior judge ruled this morning as he refused an application by the family of a woman who has been in this condition since February 2003.

The 52-year-old woman, known as M, fell into a coma on the eve of going on a skiing holiday after contracting viral encephalitis which left her with extensive and irreparable brain damage.

M never recovered consciousness and in 2007 family members applied for a declaration that her doctors may lawfully discontinue and withhold all life-sustaining treatment including artificial nutrition and hydration.

An initial expert report found that M was in a vegetative state a subsequent expert said M was in a state just above, known as ‘minimally conscious state’. This condition is above the vegetative state, with the patient having some awareness of his environment but not full consciousness.

Ruling in W v M, S and an NHS primary care trust [2011] EWHC 2443 (Fam), Mr Justice Baker said all applications of this sort must be made to a High Court judge and allocated “at the earliest opportunity to one judge who will be responsible for case management and ultimately conduct the final hearing”.

The case was the first of its kind in Britain but Baker J suggested many patients in a minimally conscious vegetative state had probably been wrongly diagnosed as being in a vegetative state.

He added that doctors considered it “reasonable to think that there were several-fold more patients in a MCS than in a VS”.

Giving guidance for future cases, the judge said the case demonstrated “the crucial role played by the formal assessment tools”, in particular the Sensory Modality Assessment and Rehabilitation Technique (SMART) and the Wessex Head Injury Matrix (WHIM), in avoiding misdiagnosis.

The judge cited earlier research which had concluded that “misdiagnosis can cause inappropriate family and legal decisions regarding withdrawal of life-sustaining treatment.”

“It is therefore of the utmost importance that every step should be taken to diagnose the patient’s true condition before any application is made to the court,” he said, before adding: “before making any decision concerning the withholding of ANH, there should be formal testing in the form of the SMART diagnostic test coupled with WHIM tests carried out over a period of time”.

On a separate point on the conduct of cases, Baker J took the opportunity to comment on access to justice in these situations.

Praising the family’s lawyers who acted pro bono, he said it was “intolerable that the family should have been dependent on the willingness of lawyers to work without remuneration”.

He went on: “In this case, the playing-field was level because of the exceptional generosity of the applicant’s lawyers. In other cases, members of a family who wished to ask the court to authorise the withdrawal of ANH but did not qualify for means tested public funding may have to appear in person, given the very high costs of litigation.

Calling on the government to review eligibility criteria, he said: “Such a situation would seem to infringe the family’s rights under article 6 of ECHR. There are many demands on the restricted legal aid budget, but consideration should be given to extending the right to non-means tested public funding to family members seeking to bring this type of application”.

VERBATIM: MR JUSTICE BAKER IN W v AN NHS PRIMARY CARE TRUST

Applications for the withdrawal of life-sustaining treatment

“In future, therefore, no such application for an order authorising the withdrawal of ANH from a patient in VS or MCS should be made unless (1) a SMART assessment (or similarly validated equivalent) has been carried out to provide a diagnosis of the patient’s disorder of consciousness and (2) in the case of a patient thereby diagnosed as being in an MCS, a series of WHIM assessments have been carried out over time with a view to tracking the patient’s progress and recovery (if any) through the MCS. If an assessment scale becomes validated in the medical literature for tracking a person’s recovery through the MCS, this assessment may alternatively be used in place of the WHIM.

Eligibility for legal aid

“Given the fundamental issues involved in cases involving the withdrawal of ANH, it is alarming to the court that public funding has not been available to members of the family to assist them in prosecuting their application. In the event, the applicant’s team has acted pro bono throughout the hearing and during much of the very extensive preparation.

Hearings in public

“The hearing of the application has vindicated the decision, made for the reasons set out in the earlier judgment reported at [2011] EWHC 1197 (COP), to conduct the hearing in open court but subject to a reporting restriction order that prevents identification of M, family members, and the care home and its staff.

“Provided that the privacy of the individuals involved is fully respected, it is imperative that the press should be as free as possible to report cases of this sort.

“The issues involved are of fundamental importance to all of us, both collectively and individually. For society as a whole, they touch upon the very challenging issues, currently the subject of much public debate, about the treatment of those suffering from severe disability, and those nearing the end of their lives. For each of us as individuals, they draw attention to the question of how we would wish to be treated should we find ourselves in a vegetative or minimally conscious state. The public needs to be informed about how such questions are resolved, be it under the advance decision procedure in sections 24 to 26 of the Mental Capacity Act or by application to the Court of Protection. It is therefore in the public interest for such cases to be reported as widely and freely as possible, provided that due respect is paid to the wishes of the family to protect their privacy.

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