Hazel McHaffie

Small cogs and big decisions

Atul Gawande is a gifted surgeon and best selling author. No ordinary man, you might think. Better: A Surgeon's Notes on PerformanceAnd yet, in his book, Better: A Surgeon’s Notes on Performance, he concludes that his place in the world, like everyone else’s, is inevitably small. Compared with the people who plan and execute the eradication of polio from southern India, or who operate on and invent new techniques for saving the lives of soldiers on the frontline of wars, or who revolutionise the practical care of patients with cystic fibrosis, he feels his role as a narrow specialist in a well-equipped American hospital shrinks to miniscule proportions. A replaceable white-coated cog in a huge unstoppable machine.

But he doesn’t wallow in self-pity for his bit-part in this play. No, he recommends becoming a positive deviant. You can read about his five positive suggestions for making a worthy difference in Better. They can challenge everyone, not just doctors. I was reading his book on a train at the weekend and I even applied his ideas to my attitude to fellow-travellers.

One of the five suggestions is Ask an unscripted question. That took my thoughts winging back to a TV documentary I saw on 13 July: Between Life and Death. Severely injured in a motorbike accident, 43 year old Richard Rudd is lying immobile in a hospital bed, wired and tubed, comatose and totally dependent. The family know his clear, recently-expressed wish was, in these precise circumstances, to be allowed to die. They’re ready to have the machines switched off.

But then … someone observes that Richard can move his eyes in response to a question. They check. They check again. It’s a consistent response. Evidence that he can now hear. He can understand. He can communicate. But he still can’t do anything else. Nor is there any prospect of recovery.

It falls to the professor heading the medical team to ask the unscripted question: ‘Do you want us to continue with your treatment? If you do, move your eyes to the left. If you don’t, move them to the right.’ After a few seconds of heart-stopping suspense, the eyes shift to the left. At the time I didn’t know whether to feel elated or deflated.

What does this say about the place of advanced directives or instructions to next-of-kin? I’ve documented mine. I’ve signed papers on behalf of my mother, too. Are these wishes null and void? I’ve given it a lot of thought since that programme, and the newspaper articles that followed it. And I’ve concluded that no, in my case, my documented wishes emphatically stand. If I ever get to a stage where all I can move are my eyes, that is not the real me. Please ignore any contradictory instruction I may appear to give in such a circumstance. Better still, don’t ask the question!

I’m with Richard’s mother: ‘You wouldn’t be human if you didn’t wonder if he wouldn’t have been better off dead.’ For myself, I don’t wonder. I know. I don’t fear being dead; I do fear the process of dying. There, my hand is declared. And that’s despite a sobering personal experience I had when my first child was three weeks old.

He collapsed at home and was rushed to hospital, moribund. The paediatrician said there was no possibility of his survival. But two days later he was still alive. Now the consultant said there was no possibility that he would be either mentally or physically normal. He showed me the test results; I knew he was right. I still remember earnestly praying that if this was the case my little boy would just die with dignity now. He didn’t. With or without dignity.

Back then parents weren’t consulted. Just as well really, because if I’d had my way our family would have missed out on thirty nine years of a wonderful son, brother, husband, father, who is perfectly normal in every way – oh, except that he has chosen tax as his career. You have to have a kink somewhere to do that, don’t you? But he would definitely, emphatically, indisputably not be better off dead. If I were ever in danger of acquiring an inflated sense of my own importance, this experience of my fallibility alone would reduce me to size.

But hold your horses … that doesn’t give anyone permission to override my documented instructions! I may be infinitely small in the big scheme of things but I can still make my own big decisions, thank you very much.

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4 Responses to “Small cogs and big decisions”

  • Lindsay says:

    Wow Hazel, no punches pulled this time! I did not see all of the programme you refer to but it seemed to confirm a thread of your two latest books. That is that we don’t actually know what we will appreciate as our life changes. I well understand that, given your current life experiences, the thought of pleasure from life with a mind trapped in an inactive body is beyond contemplation. So how come Richard, who seemed to think in a similar to you before his accident, came to a different conclusion when his personal circumstances changed?

    Not that I think that you are wrong, just a bit surprised at your certainty!

    • Hazel says:

      Yes, I know, uncharacteristically opinionated, eh? I’m afraid I don’t know what made Richard change his mind – he wasn’t able to explain. But the interpretation put on it by several commentators was that when it comes to the crunch life itself is very precious. It is; but for me personally there are worse things than death. What do you think?

      • Lindsay says:

        I didn’t think I would get away with what I had written but it was late last night and I couldn’t find the right words to say any more.
        I guess there are at least a couple of points to make. Firstly the whole situation is complicated by the fact that we have, in most cases, our families and those who we love and are loved by to think about. In the cold light of day we might, as family, know what is ‘right’. But again we know that people are less sure when faced with ultimate decisions.
        The second point is that I agree that there are worse things than death, especially when we have strong beliefs that death is not the end.
        A belief in God, or not, can be a big factor in our decisions. I believe in God and that alters my outlook. Whilst I would like to share my beliefs, and hence some decisions, I would not try and impose these decisions on those who do not share my reasonings. Sometimes I think that my belief in God makes things easier and sometimes harder!

  • Hazel says:

    I didn’t intend to ‘force’ a declaration, Lindsay! Sorry if I gave that impression. But you’ve nicely captured two important points. We all need to think for ourselves, taking into account our own belief systems, family views and histories, and arrive at our own personal conclusions. And when we really think deeply about these issues, they tend to become increasingly less black and white. I’m in the business of encouraging that level of honesty and questioning, hence provocative statements in my blog!

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