KH had suffered from MS for over 30 years and had lacked decision-making capacity for the past 20 years. Most of her bodily functions had ceased to work and she required 24-hour nursing care. She had little speech, was disorientated in time and place and had to be fed through a PEG tube. She no longer recognised friends or family. When her PEG became dislodged the Claimant Trust went to the court for the approval and guidance before re-inserting the tube, when it became clear that the family and friends of KH were strongly opposed. The basis for the family’s claim, was that 10 years ago KH had said that she would not want to be “kept alive by machines.” She did not ever want to be a “burden” or continue to live if she no longer recognised her family. They were aware that a failure to reinsert the PEG would result in death by starvation. The family were unanimous that KH would wish to die, in such circumstances.
The court of first instance re-examined the “best interests” test laid out in Re F (1990) in the House of Lords. They focused on the second part of the test which asked whether KH had expressed her wishes as to how she wished to be treated in the event that she became incapacitated.
If her wishes were sufficiently clear and referred to particular circumstances, then it would be binding on medical practitioners. The principle of personal autonomy underpinned this rule, and that the rights of an individual not to have their bodily integrity infringed. The court also found that society holds all life sacred and it should be preserved if at all possible. For an individual to override this public interest argument, there must be a clear and unequivocal direction by that person.
The court found that although KH had expressed some wishes about her future treatment, they were not sufficiently detailed and did not refer to any particular set of circumstances. The choice that the court now had to make on her behalf, was whether KH would have chosen to die of starvation or remain alive, without pain, but with no quality of life. Clearly KH had not envisaged this specific possibility. It decided that her wishes were not sufficiently clear to amount to an advance directive that would be legally binding.
The third stage of the test was where the patient’s best interests laid. The court was very sympathetic to views of the relatives’ feelings that she was not being allowed to “die with dignity”. It was an extraordinarily difficult decision, with stark choices for either side. However the court decided that it could not sanction the death by starvation of a patient who was not in a permanent vegetative state, other than with their clear and informed consent or where their condition was so intolerable as to be beyond doubt (in light of the Burke decision the year before). It was the view of the court that allowing the relatives’ wishes to take precedence would result in a less dignified death than that awaiting her in the future. It could not be said that life prolonging treatment would be of no benefit at all.
The Court of Appeal agreed and found that that the judge had properly directed himself in law and that the judgment that he exercised was correct.