Report No. 196

(ii) Position of the incompetent patient

The position of a PVS is already decided by the House of Lords in Airedale vs Bland. But, the Court of Appeal clarified that to keep a PVS patient alive merely because of his advance directive, will violate the Mental Capacity Act, 2005. They said, explaining Airedale, as follows:

"We do not consider it appropriate to add to what was said by their Lordships (in Bland), other than to make the following observation. While a number of their Lordships indicated that an advance directive that the patient should not be kept alive in a PVS should be respected, we do not read that decision as requiring a patient to be kept alive simply because he has made an advance directive to that effect.

Such a proposition would not be compatible with the provisions of the Mental Capacity Act, 2005, which we consider accords with the position at common law. While section 26 of that Act requires compliance with a valid advance directive to refuse treatment, section 4 does no more than require this to be taken into consideration when considering what is in the best interests of a patient."

He continued:

"There are tragic cases where treatment can prolong life for an indeterminate period, but only at a cost of great suffering while life continues. Such a case was In re J (a Minor) (Wardship: Medical Treatment) (1991 Fam 33). There are other cases and these are much more common, where a patient has lost competence in the final stages of life and where ANH may prolong these final stages, but an adverse cost so far as comfort and dignity are concerned, sometimes resulting in the patient's last days being spent in a hospital ward rather than at home, with family around.

It is to these situations that so much debate in this case has been directed. Apprehensions have been expressed by some who have intervened that those in charge of patients may too readily allow, or fail to provide, ANH or other life prolonging treatment on the ground that the patient's life, if prolonged, will not be worth living. As an example of the first situation described above, the Disability Rights Commission brought to our attention the disturbing story of Jane Campbell.

She suffers from spinal muscular atrophy and is severely disabled. She was not expected to live beyond the age of four but has lived a fulfilling and productive life of high achievement. In 2003, she was struck down by pneumonia. Two consultants were minded to conclude that her life was so parlous that, if she needed artificial respiration to remain alive, she would not wish to receive it. Only the intervention of her husband, who showed them a photograph of her taking her degree, persuaded the consultants that her life was worth saving."

The Court of Appeal referred then to some disturbing reports of the Medical Ethics Alliance which were placed before the Joint Committee of Parliament on the draft Mental Incapacity Bill. These were cases where patients who were terminally ill appear to have been denied water and nutrition in circumstances where this was contrary to the demands of palliative care. The Reports underlined the importance of clear case law and guidance. The Court of Appeal approved Justice Munby's opinion in this context except for the last two sentences underlined. Munby J had said:

"There is a very strong presumption in favour of taking all steps which will prolong life, and save in exceptional circumstances, or where the patient is dying, the best interests of the patient will normally require such steps to be taken. In case of doubt, that doubt falls to be resolved in favour of the preservation of life. But the obligation is not absolute. Important as the sanctity of life is, it may have to take second place to human dignity.

In the context of lifeprolonging treatment, the touchstone of best interest is intolerability. So if life prolonging treatment is providing some benefit, it should be provided unless the patient's life, if thus prolonged, would from the patient's point of view be intolerable."

After approving the earlier part of the extract, the Court of Appeal commented on the last two sentences as follows:

"We do not think that any objection could have been taken to this summary had it not contained the final two sentences, which we have emphasised. The suggestion that the touch stone of 'best interests' is the 'intolerability' of continued life has, understandably given rise to concern. The test of whether it is in the best interests of the patient to provide or continue ANH must depend upon the particular circumstances. The two situations that we have considered above are very different. As to the approach to be adopted to the former, the Court dealt with that in Re J and we do not think it appropriate to review what the Court there said in a context that is purely hypothetical."

As regards the 'best interests' of a patient close to death, the Court of Appeal observed that the Judge Munby himself recognized that' intolerability' was not the test of 'best interests' and that the following words of Munby J were correct:

"where the patient is dying, the goal may properly be to ease suffering and, where appropriate, to 'ease the passing' rather than to achieve a short prolongation of life" and the Court of Appeal continued:

"We do not think it possible to attempt to define what is in the 'best interests' of a patient by a single test, applicable in all circumstances. We would add that the disturbing cases referred to in paragraphs 57 and 58, if correctly reported, were cases where the doctors appear to have failed to observe the Guidance. They are not illustrative of any illegality in the Guidance. The Guidance expressly warns against treating the life of a disabled patient as being of less value than the life of a patient without disability, and rightly does so"