‘She was a little old Italian lady in her early sixties, and for years she had been looking after her chronically ill husband. She was many years his junior and very strong-minded. She didn’t care much for conventional Western medicine, instead swearing by the use of herbs and homeopathy. That had almost spelled his demise: when he came down with serious diarrhoea, she administered those herbs of hers for days, and he eventually ended up unconscious in the emergency department. He needed resuscitation and life support, which is how he came to us in intensive care the week before Christmas. She came with him and never left his side.
After several days he came off the ventilator, but his condition worsened. His heart was already in bad shape: he’d had strokes in the past, was wheelchair-bound, suffered from diabetes and now his kidneys were on the verge of collapse. He was nearly eighty; were we really supposed to pull out all the stops to keep him alive? The problem was that we couldn’t ask him directly: he was conscious but drowsy. We obviously involved his wife in life-prolonging discussions, and the bizarre months that followed are still very clear in my mind.
Initially we were on the same page: we were to continue our treatment but not escalate to heroic measures. But on Christmas Eve, she suddenly changed her mind. I want everything done to keep him alive, she said to the perplexed junior doctor on duty. I still remember our conversation the next morning: we went round and round like a revolving door. As doctors we must of course avoid pointless medical procedures, but I didn’t want to enter a conflict with her either. I explained that it really was better to leave him off the ventilator, that it would be cruel to resuscitate him if his heart failed again and that our job was to act in his best interests. She seemed satisfied. But then we received a telephone call from the police: she had lodged a report accusing us of attempted murder. I’d just finished my shift and handed over to a colleague, who eventually capitulated to her threats. His bed then became the focal point of a battery of machines that were keeping him alive. And while his condition actually improved, his heart had weakened to the point where he could no longer survive without ventilation. And so there he remained in our ward, speechless and powerless, with that woman fussing about him all day long and doling out her forceful, aggravating commands. We had to issue no fewer than three banning orders against her for using obscene and aggressive language. But her husband burst into tears whenever we barred her, so we always let her back in again. All the while she kept lodging complaints – to the police, her MP, the hospital chief executive – accusing us of trying to murder her husband. We did all we could to keep her satisfied – even bringing in a consultant homeopath to pacify her.
What didn’t help was that she had terribly bad breath: you could smell it a mile off, and she was there day and night. The nurses on duty always switched shifts with her halfway, since six hours of her hectoring and halitosis was more than anyone could bear.
The situation seemed hopeless, until one day we heard that she had hired a ventilator to take him home. The personnel for operating such specialised equipment would cost hundreds of thousands a year, and social services refused to pay – but she would not be dissuaded. I can still remember sitting down with her in an attempt to talk her out of it. You don’t have the proper training to ventilate him, I said. Doesn’t matter, she replied, I’ve seen the nurses do it. Any idiot can do it.
It would spell his death, we all knew it. Could we just let him go like that? We consulted the hospital lawyer, who saw no objections. The patient was of sound mind, we had explained the risks, and if he wanted to leave against our recommendation then that was his decision. And so, shortly before the start of summer and six months after arriving at our intensive-care unit, he trundled off home with his wife and her ventilator. We gave them one day tops. Imagine our surprise when, nine months later, we received a phone call from the ventilator company. She could no longer afford the hire, so what could they do? Surely they couldn’t just pull the plug on him? I remember my astonishment after hanging up the phone: she’d actually done it, she’d managed to keep him alive on the machine all that time. Shortly afterwards she moved with him to Scotland, where the healthcare system did cover the costs of ventilation.
We never found out what age he reached, or how the story ended. But that’s not the point. We all thought we knew what was best for both of them, but we had it all wrong. And it was she who confronted me with that reality. I still remember the man’s happiness when he heard he could finally go home. He wanted to keep on living, and she was there for him in her own inimitable way. She taught me that we should guard against medical paternalism, the notion that only the doctor’s opinion counts. Patients and their families will sometimes have other ideas, and occasionally the doctors are just plain wrong. It was a valuable lesson in humility.