On 28 September 2011 the Court of Protection handed down their judgment in the case of W (by her litigation friend, B) v M (by her litigation friend, the Official Solicitor) and S and A NHS Primary Care Trust.
In February 2003, (when she was supposed to be leaving for a skiing holiday) M was found by her partner in a drowsy and confused condition. She was taken to hospital where she soon fell into a coma. It was discovered that she had suffered viral encephalitis which left her with extensive and irreparable brain damage. Ever since, she has been wholly dependent on others for her care and has been fed artificially through a gastrostomy tube.
When she emerged from the coma, it was diagnosed that she was in a vegetative state. In the course of investigations for the purpose of this case it was discovered that she was, in fact, not in a vegetative state (VS) but rather in a minimally conscious state (MCS).
Her family asked the Court of Protection to authorise the withdrawal of artificial nutrition and hydration (ANH).
This was the first time in this country that a court has been asked to authorise this in a patient in a MCS.
Over the course of a ten day hearing the court heard evidence from the family, who contrasted her previous life with her current circumstances, and told the judge about the things that she had said before her collapse which, they maintained, demonstrated she would not want to be kept alive in this condition. The court heard evidence from a number of members of her care team who portrayed her in much more positive terms. The court also heard expert evidence, particularly from a specialist occupational therapist, who has developed a widely used and internationally respected assessment technique known as the “SMART” (Sensory Modality Assessment and Rehabilitation Technique).
The family’s case was based substantially on what they said M’s wishes and feelings were and still are. However, the judge noted that M had not made any formal advance decision that she wanted artificial nutrition and hydration to be withdrawn in the circumstances that existed. The judge concluded that the various statements made by M prior to her illness were informal and not specifically addressed to the question that he had to decide. He took the statements into account but did not feel that they were binding and did not feel that they carried substantial weight in his decision.
The factor, which did carry substantial weight, was the preservation of life. The judge repeats throughout the judgment the fact that the law regards the preservation of life as a fundamental principle.
In conducting a balancing exercise of all the relevant factors, Mr Justice Baker concluded that it was not in M’s best interests for artificial nutrition and hydration to be withdrawn and he refused the application.
Although running into some 76 pages the judgment does not contain any surprises for those familiar with the Mental Capacity Act 2005 and best interests applications.
The judgment summarises the case of Bland. Readers will recall that Anthony Bland sustained catastrophic and irreversible brain damage as a result of being crushed during the Hillsborough Stadium disaster in April 1989. He was in a PVS without any hope of recovery or improvement. In that case the principal speech was delivered by Lord Goff. The judge in M summarised the key principles from that speech as follows:
- The principle of the sanctity of life is fundamental.
- The principle is not, however, absolute and may yield in certain circumstances, for example to the principle of self determination.
- A decision whether ANH treatment should be initiated or withdrawn must be determined by what is in the best interests of the patient.
- In a great majority of cases the best interests of the patient will be likely to require that the treatment should be given.
- There was a category of case in which the decision whether to withhold treatment would be made by weighing up relevant and competing considerations.
- Such an approach was inappropriate in the case of Anthony Bland as the treatment had no therapeutic purpose and was futile because he was unconscious and had no prospects of recovery.
The court then looked at the case law following Bland and, in particular, looked at:
- R (Burke) v GMC
- Portsmouth NHS Trust v Wyatt
- W Healthcare NHS Trust v H
- Pretty v United Kingdom
The court emphasised, on several occasions, that decisions about the proposed withholding or withdrawal of ANH from a person in a VS or a MCS should always be brought to the court, as specifically required by paragraph 5 of the Court of Protection Practice Direction 9E.
Some 14 pages of the judgment are devoted to the positive evidence of the care home staff.
The court agreed with the PCT’s arguments, that the balance sheet approach should be applied in all cases, save for those involving PVS. A weighing up of the patient’s best interests should be conducted in every case, save where the patient is in PVS where the futility of treatment means that treatment has no benefit at all.
The court acknowledged that it was clear that the benefit of preserving life will always weigh extremely heavily in the balance, but that it cannot be assumed that there will always be no relevant disbenefits to weigh against it.
For those interested in reviewing the judgment, the specific best interests analysis is set out at paragraphs 219-248. The judge weighed up the preservation of life, M’s wishes and feelings, pain, enjoyment of life, prospect of recovery, dignity and the wishes and feelings of family members and carers.
The court highlighted the crucial distinction between an Advance Decision that meets the criteria required by the Mental Capacity Act and other expressions of wishes and feelings.
The court listed nine advantages of withdrawing ANH and seven advantages of continuing ANH and concluded that it would not be in M’s best interests for ANH to be withdrawn.
- Although M’s life would be cut short by up to ten years, she would be freed from the pain and discomfort from which she is currently suffering and the prospect of increased pain from her chronic conditions.
- She will not have to endure any further treatment which could bring significant and unpleasant side effects, nor any other intrusive tests or assessments.
- She will be spared years of experiencing further distress, such as she demonstrates after seeing her partner or hearing certain pieces of music or at other times.
- She will be freed from the indignities of her current circumstances.
- Being allowed to die would accord with a number of comments she made prior to her illness as to her wishes and feelings, in particular at the time of the admission of her grandmother and later her father to nursing homes and at the time of the Bland case.
- By authorising the withdrawal of ANH and thereby allowing M to “die with dignity” the court would be acting in accordance with what the family members firmly believe M would have wanted.
- Her sister and her partner wished ANH to be withdrawn to allow her to die. Their wishes and feelings were based not only on what they believed she would have wanted, but also what they generally believed to be in her best interests.
- She would be spared further years of life in MCS from which there is no likelihood that she will emerge.
- Although she will experience discomfort and possibly pain and distress during the process of withdrawal of ANH those experiences will be limited in time and can be ameliorated by medication and experienced end of life care.
- M will be kept alive for ten years. The preservation of life is a fundamental principle.
- She will be spared the effect of the withdrawal of ANH. Even with medication and high quality care, there is a significant risk that the process of dying by starvation and dehydration will cause her pain and distress.
- She will continue to experience life as a sensate being, with a degree of awareness of her self and her environment.
- She will continue to gain pleasure from the things which, as described by her carers, give her pleasure at present; company, listening to conversation, music and the sensory experience of the snoozeroom.
- With the introduction of a planned programme of stimulating experience, it is likely that her enjoyment of life can be extended.
- If her room is made more comfortable and homely, her immediate surroundings will become more congenial and add to her pleasure in life.
- As she is clinically stable, she will continue to experience life at this level for a number of years.
The importance of preserving life was the deciding factor in this case.
Helpfully, the court also made some observations for future cases. These observations have been approved by the President of the Court of Protection.
Firstly, the court emphasised that a decision to withhold or withdraw ANH from a person in a vegetative state or a minimally conscious state must be referred to the court.
Secondly, the judge highlighted the crucial role played by formal assessment tools such as the SMART and the WHIM (Wessex Head Injury Matrix). He emphasised that it was therefore of utmost importance that every step should be taken to diagnose the patient’s true condition before any application is made to the court. Specifically, they stated that, in future, no such application for an order authorising the withdrawal of ANH from a patient in VS or MCS should be made unless:
- a SMART assessment (or a similarly validated equivalent) has been carried out to provide a diagnosis of the patient’s disorder of consciousness; and
- 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.
The court also made two other key points:
- They were alarmed that public funding had not been available to members of the family to assist them, and that their team therefore had to act pro bono throughout the hearing and during the extensive preparation. They asked that consideration be given to extending the right to non means tested public funding to family members seeking to bring this type of application.
- It was imperative that the press should be as free as possible to report cases of this sort because the issues involved are of a fundamental importance to us all, both collectively and individually.
These cases are always difficult for both families and staff involved in caring for such patients. It is helpful that the Court of Protection have given guidance for the future.