Daily Mail

Yes, we can save lives — but is it worth the suffering?

- NHS psychiatri­st Max Pemberton may make you rethink your life DrMax@dailymail.co.uk Dr Max

THe case of Charlie Gard has raised many big, complex ethical questions, and it’s clear there are no easy answers.

The whole situation is utterly heartbreak­ing. But it does also highlight the issue of the limits of medicine — of when enough is enough and treatment risks being just too much.

of course, I understand his parents’ desperatio­n to do whatever they can to save Charlie, but I do wonder at what cost?

I have seen what happens to these babies in intensive care, clinging onto life by a gossamer thread, weighed down with the love and expectatio­n of their parents and doctors who hope beyond hope they will survive.

Medicine intervenes and does its best to save the child.

Sometimes it loses the battle and nature takes its course and the baby dies. Sometimes it is victorious and the baby, often frail and badly brain-damaged, defies the odds and survives. A success.

I’m sorry, but sometimes these victories are hollow. While medicine might claim to have won, it is a Pyrrhic victory, with the real devastatin­g cost of this battle not seen for many years.

For these tiny scraps of humanity, bundled up and cared for at home by loving parents, soon grow up. Parents grow old. They soldier on, trying to care for profoundly disabled adults who cannot see or hear or speak, their muscles tight and unusable, twisting their joints so they’re unable to bear weight on their feet and can only be moved by a hoist. It’s no life.

I know this because a few years ago I worked with profoundly disabled adults in care homes.

Kept alive by medicine, many were on long-term antibiotic­s to fight off constant infections. Some had problems swallowing, so had to be fed through permanent tubes in their stomach. Many had lost their teeth because they were unable to have adequate dental care, so all their food was pureed.

Unstimulat­ed, blind, deaf and able to experience the world only through touch, they would bite their hands in frustratio­n until large calluses appeared.

day in and day out, they would sit in the gloom, propped up by cushions and unable to communicat­e. Those who couldn’t keep their head up would lie on a bed for most of their lives. Fed, watered, turned. There was no dignity, no real life.

It was unforgivab­ly bleak, and I would often come home and damn medicine for what it had done to those people, who should have been allowed to die long ago.

Had they been animals, it would have been considered cruel to keep them alive like this. That is not to say there aren’t severely disabled people who bring or experience joy, and that we shouldn’t try to help them. But we need to bring some perspectiv­e to the situation: there are many people who’ve been saved by medicine as babies who now face a lifetime of torment.

None of this is easy to say or, I imagine, to hear. However, it’s important to talk about this because it doesn’t just relate to the very young. The same happens to older people, kept alive long after their time as come.

WE DON’T want to think of the limits of medicine. We want to think it will solve our problems. Yet sometimes the solution it provides creates far more problems: a living nightmare for the very people it set out to help.

This is not about euthanasia or physician-assisted suicide. Nor is it about finding a villain in the piece. It’s simply about realising that medicine has limitation­s, and when you butt up against those limits, you realise how imperfect some of its solutions are.

I remember a wily old professor of medicine who taught me saying: ‘In medicine, if you’re not careful, trying to help can cause just as much misery for your patient as not helping them at all.’

I’ve seen this time and again, but the memory of the first patient I encountere­d like this has stayed with me. I didn’t know if Mr Telford could feel any pain, but I remember staring into his eyes, looking for a flicker of emotion.

Nothing. I tentativel­y listened to his chest with my stethoscop­e. He had pneumonia, yet I couldn’t help but think I was doing something wrong as, uneasily, I prescribed another course of antibiotic­s.

A nurse began washing him, and again his face showed no register that he was still alive. I helped the nurse tug him onto his side while she washed his back. only a few weeks ago he’d been playing a round of golf, but now his arms hung like dead weights.

Mr Telford never finished his game. Half-way round the course, he’d had a massive stroke which had killed off most of his brain.

Cruelly, the part that controlled the functions vital for life — breathing and heart — had remained intact.

Mr Telford was just one of many patients like this I saw on the stroke ward, and I soon began to dread going there because it made me feel so uncomforta­ble. What was medicine doing here? Wasn’t it causing more suffering?

eventually Mr Telford’s family intervened: he wouldn’t want to live like this, they said. Two days later, he died. He died because this time we didn’t treat his chest infection. It seemed the most humane choice — and, I still think, the right choice.

He’d survived this long because of medicine, and it seemed wholly appropriat­e that at some point medicine should re- evaluate its role in his care.

The best thing I did for Mr Telford was crossing off the antibiotic­s I’d prescribed, his family beside me as I did. As the poet Cecil dayLewis wrote: ‘Sometimes love is proved in the letting go.’

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