Hazel McHaffie

Between Life and Death

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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