Every adult in England has the opportunity to anticipate their future incapacity, and make efforts to influence, amongst other things, the medical treatment they receive.
Perhaps the most the adaptable mechanism is to appoint a Lasting Power of Attorney, armed with the authority to make certain treatment decisions, which can include the decision to refuse life prolonging treatment. Less effective is the provision of an Advance Decision to refuse treatment, since it is very difficult to anticipate the details of one’s eventual deterioration. Faced with an AD that does not closely correspond to your precise clinical circumstances, most clinicians will err on the side of caution, particularly when life is at stake. Under these circumstances, your capacitious plea from long ago not to be resuscitated may fail as the doctor gives you the ‘benefit of the doubt’, and defibrillates. This is an act of good faith, but not in accord with what you had hoped for.
There are less legalistic options. Some citizens set out their wishes and feelings in an advance statement, with no lawyer in sight; this can be on paper or online, with the aspiration that it may one day join the much vaunted electronic record. Since advance statements are essentially a narrative of ones wishes, beliefs, feelings, they can in theory be very powerful. Unencumbered by the legal requirement of Lasting Powers of Attorney and Advance Decisions, anything the advance statement loses in legal force it gains as a more tangible, understandable, human plea for limiting future treatment.
And these mechanisms always do that; patients are (of course) perfectly entitled to plead for a particular treatment, but they have no right to demand a therapy in the NHS which doctors do not consider to be in their interests.
A recent case demonstrates the power of narrative, albeit one constructed by the patient’s friends. TH was a 52 year old man at the most severe position on the spectrum of a minimally conscious state. His case was being heard in a court whose duty it was to decide whether his nutrition and hydration should be withdrawn. Although the hearing was going to be adjourned for the court later to hear additional medical evidence, the court took the opportunity to hear from the patient’s friends, in relation to any relevant feelings or wishes he might have expressed.
TH’s friends transported his character and personality into the court room, communicating his words and wishes; and also, but entirely differently, his feelings. It was clear to the court from the outset of evidence that TH had never had a conversation with his friend that anticipated his current plight, so that the legal requirements of an Advance Decision could not be met. But the power of the narrative was not diminished by its lack of legal weight. No-one ‘portrayed TH as a hero’, beset as he was by alcohol dependency and past demons. He was profoundly distrustful of the State and all its works. Whilst still living in great difficulty at home, TH had refused to allow care workers to bathe him, and asked his ex wife to help him. Despite the breakdown of their marriage, she did so, since she knew he could not face the indignity of being bathed by strangers.
What was clear was TH’s loathing of hospitals, from which he would remove himself at the earliest opportunity, notwithstanding the resultant damage to all aspects of his health. The court found that in many ‘oblique and tangential ways’, TH had over many years communicated his views to his friends in an uncompromising and blunt fashion, eradicating any lingering doubt that he would wish to continue his life in his present circumstances. He would, if he could, refuse life sustaining treatment. The judge was certain that TH would want to leave hospital and end his days quietly and with dignity at home with his friends
The court’s eventual judgement, following adjournment, has not been reported in the intervening 3 years. We are left to speculate whether TH’s wishes were realised, but in no doubt as to the loyalty of his friends.
Department of clinical law, November 2017