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.
Connie Yates and Chris Gard are pictured with their desperately ill son Charlie. 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
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.
The case of Charlie Gard has raised many big, complex ethical questions, and it’s clear there are no easy answers. Little Charlie is pictured with his parents
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