The Mental Capacity Bill, unless amended, will miss an important opportunity to help the families of people in a persistent vegetative state, argues Paul Rumley


Dr Kay Pavier was 39 years of age and married with two young children when she went into hospital suffering from pneumonia. Within two days she had suffered a cardiac arrest and was eventually diagnosed as being in a persistent vegetative state (PVS).


With only her brain stem still functioning, Dr Pavier was able to breathe unaided, but had no recognition of her surroundings and no hope of recovery.


Eleven years ago the House of Lords made a ground-breaking and courageous decision to allow patients in a PVS to have medical treatment in the form of hydration and nutrition withdrawn from them, to allow them to die.


What Dr Pavier's husband, Martyn, did not realise was that he was entirely in the hands of the hospital trust with regard to applying for that decision.


In the case of Dr Pavier, it took the hospital 15 months to diagnose that she was in a PVS and to start the court process. Dr Pavier was eventually allowed to die 22 months after her original collapse.


This was viewed by many to be unsatisfactory, and the announcement of the introduction of the Mental Capacity Bill into Parliament was met with great expectation. But following the first reading of the Bill on 17 June 2004, is it really the step forward and the reforming legislation that it claims to be?


The Bill itself provides for a new Court of Protection, separate from the Supreme Court, which will make medical treatment and financial decisions on behalf of those people who lack capacity to do so. The new court will decide, on a balance of probabilities, which adults lack capacity. Any medical treatment decisions will be made in accordance with what is in the patient's best interest, together with any previously expressed views and any other factors the patient would have considered. The court can appoint a deputy to make medical treatment decisions on behalf of patients, but the court can appoint visitors to examine patients and report directly to it.


The court can make a declaration to discontinue life-sustaining medical treatment for a patient and there is full statutory recognition of advanced decisions in relation to medical treatment.


A person from a set class within the provisions of the Bill can apply to the court for a medical treatment decision on behalf of a patient who lacks capacity.


The Bill is likely to become law in the near future. The major problem with the proposed legislation as drafted is that far from being a piece of law reform, it simply restates the law and the process of decision-making in relation to patients in a PVS as it is currently. There is no new medical law tribunal to make decisions locally and the process is still costly. The great travesty is that the relatives of patients in a PVS, with whom the true decision-making power should lie, are specifically not given any automatic right to make an application to the new court within the draft Bill.


Equally worrying is the potential for a perception to develop that life and death medical treatment decisions are somehow linked to financial decisions, given that the new court will be deciding both types of application.



Decisions to withdraw hydration and nutrition from patients who lack mental capacity are once again being highlighted, following the decision in the case of Oliver Leslie Burke v the General Medical Council ([2004] EWHC 1879 Admin. Mr Burke's case against the General Medical Council was largely based on the provisions of the Human Rights Act (HRA) 1998, and sought a ruling that the doctors treating him should abide by his decision that he should continue to receive hydration and nutrition after he became incapable of communicating that decision himself.



The court decided that the doctors had to comply with Mr Burke's clear wishes, and '...if life prolonging treatment including hydration and nutrition is providing some benefit it should continue to be provided unless the patient's life, thus prolonged, would be from the patient's point of view intolerable'. This test of intolerability is stated in the judgment to be a 'touchstone' of what is in the patient's best interests. Therefore, the basic test of best interests remains, and simply has an additional element added to it by this judgment. This decision is in effect a restatement of the law as it currently stands.


The requirement to give effect to patients' treatment decisions, as clearly expressed in advance decisions/'living wills', has previously been recognised and is now about to be enshrined within the Mental Capacity Bill.



In NHS Trust A & NHS Trust B (FD00P07066 & FD00P11143), there was a specific judgment that there would be no breach of article 2 (the right to life) in withdrawing hydration and nutrition from a patient in a PVS.



This was because prolonged treatment was not in a patient's best interests given that there was no hope of recovery. The position in relation to futile treatment is unchanged. It was also decided that there would be no article 3 infringement (the right not to be subjected to inhuman and degrading treatment) in terms of the manner of death. This was because patients in a PVS have no recognition of what is happening to them, although Mr Justice Munby concluded that was not necessarily determinative of the issue in Burke.


Being fully aware of the manner of his death was understandably an important issue to Mr Burke. But this issue was in fact tackled 11 years ago in the decision regarding Anthony Bland, who was left in a PVS following the Hillsborough football ground disaster of 1989. In that decision, it was clearly set out that patients from whom hydration and nutrition were withdrawn would be heavily sedated to eliminate the risk of causing inhuman pain and suffering.


The Burke judgment also does not assist with the more common problem, given the low numbers of people who make written advance decisions, of patients who have no advance decision dealing with whether or not they would wish to continue receiving life-prolonging medical treatment. What this judgment does make clear, especially as the court was told that decisions to withdraw hydration and nutrition affects 'thousands' of patients, is that judicial assistance with these decisions will remain and perhaps be of increasing importance. This is why it is vital that we get the court decision-making process right.


The option of a fully separate medical decision-making tribunal, offering flexibility of process, sitting locally to the particular patient and giving full access rights to patients' families has not yet been properly explored. Nor have the costs of such a tribunal been balanced with those involved in setting up the new Court of Protection.


While it is heartening to see the government finally attempting to tackle this area - coming as it does 11 years since the decision in the case of Anthony Bland - it is sad to see a Bill that represents a monumental loss of opportunity for true law reform.


For families such as that of Martyn Pavier and his two young children it is too little and too late, unless the Bill is heavily amended as it proceeds through both Houses of Parliament.



Paul Rumley is an associate solicitor in the clinical negligence department at Bath and Swindon-based law firm Withy King