I was too tired last night to note some thoughts I had following the lecture by Prof Huxtable. Here they are.

  1. Minimally Conscious State
    The one certainty about the MCS is that nobody can predict with any certainty the outcome, meaning that any prognosis made is speculative, including the “no prospect of recovery” diagnosis.
  2. Best Interest
    When decisions are made, by judges, about treatment or withdrawal of treatment/support, one important factor, in addition to a ‘living will’ or a ‘lasting power of attorney’, is the ‘best interest’ of the person in question. When determining that interest, in Ireland, judges generally follow the opinion of ‘experts’, meaning doctors, possibly therapists and other professionals. We have seen, time and again, that doctors are not the right persons to determine treatment. To put it bluntly, had we followed the advice of doctors, Pádraig would be dead. Several times (if that was possible).
  3. Decision maker
    Decisions about treatment or the withdrawal of it, in Ireland, do not involve the family. In fact, the family does not have any role if the person in question is an adult (child). This is not only what we have been told, this is what we have been given in writing as the official HSE policy. For example, we were told that a carer could decide to call an ambulance to bring Pádraig to the hospital if they thought that was necessary. (Put that into the context of no regulation for the home care sector and no minimum qualification for carers.) For more serious questions, the HSE often (or generally) applies to the High Court to make a person a ward of court, making double-sure the family cannot ‘interfere’. In those cases it is the President of the High Court who decides, taking into account the views of those he chooses to consult – this can include the family. But – how can any person take a decision about the life or death of a person about whom he has received reports but whom he does not know and whose personality, character and current condition they have not experienced.
  4. Death and Life
    Judges have had to decide about the right to die. And there are arguments to assert that right in certain circumstances. But – there is also the right to live. And there are, at least, as many arguments to assert that right. The right to live can involve the obligation of society to provide the resources to assert that right (it might have to cover the cost of treatment, for example). And this is not optional, it is a human right that can be asserted by law.

Prof Huxtable said last night in his lecture, and repeated it when he answered questions, that he was ‘sitting on the fence’ in relation to these important questions. In my own, non-scientific and non-legal, opinion, sitting on the fence can kill people.