03:08, September 26 77 0 theguardian.com

2017-09-26 03:08:03
Why I needed to let my little brother die

My little brother Matty was knocked over by a car on his way home from a snooker hall near Snaith in Yorkshire in 1990. He was 16 and we desperately wanted him to survive.

If Matty’s accident had happened a few years earlier he would have died in the road – but he was intubated, resuscitated, and had some holes drilled in his skull to relieve the pressure on his brain. So he remained in a critical condition for a few days, and then opened his eyes at the rate of a few millimetres a day, and that was really all he ever did. He couldn’t go to rehabilitation because there was nothing to rehabilitate. So we brought him home and built a bungalow extension on to the pub where we lived, and carried on hoping and dreaming that if we loved him enough we could reverse his brain damage.

It was when I saw Tony Bland, who was left in a persistent vegetative state (PVS) after the Hillsborough disaster, on the news that I realised there was a legal way out. Bland died after his treatment was withdrawn in 1993. But it wasn’t until 1998, when Matty was 24, that we went to court and a judge agreed that Matty’s feeding tube should be withdrawn so that he could die.

Everyone involved was compassionate, and I have always felt grateful that they tried not to make it horrible for us. But it was horrible. That’s why I welcomed last week’s ruling by Mr Justice Peter Jackson that in future, where doctors and families are in agreement they should not have to go to court to seek permission for treatment to be withdrawn from patients in a persistent vegetative or minimally conscious state.

I know lots of people will jump up and down and say we’re all going to start murdering our relatives, but this is a modest, compassionate step. Obviously vulnerable people need to be protected, but when something so terrible happens to a member of your family, anything that eases the burden is a good thing.

The reason court proceedings are so hard for families is that not only do you have to agree that you want the person to die, you have to administer it – make statements and swear affadavits – so you feel implicated. It took a year for the case that led to last week’s judgment to go through court, and it’s incredibly hard to be with someone, to care for them, when you know they’re going to die. You still don’t want them to get bed sores. You still want them to have physiotherapy so their limbs don’t get more twisted.

The surgeon Henry Marsh in his book Do No Harm says it’s very easy to save someone’s life with brain surgery – you drill some holes, let out some blood. But what we don’t know is what to do then, with those people who make no progression beyond having a beating heart.

If you haven’t been with someone with severe brain damage you might think that such people should be kept alive just in case of some kind of sleeping beauty scenario. But with new developments in medicine, death is no longer the worst outcome. It took me about four years to realise that Matty wouldn’t have wanted to live like that.

Of course there are connections with the wider debate about assisted dying, but I think these cases are right out there on their own. Often people who object to assisted dying do so for religious reasons, but Matty wasn’t alive because of the will of god. He was alive because of a human intervention that probably shouldn’t have been made. The right to life argument can’t be applied in the same way across the board.

People are worried about creating precedents, but when someone wants to talk to me about all this, and has views they want to discuss, I’m always interested in whether they’ve spent time with someone in a PVS; if they have, then I’m quite interested, but if they haven’t then I’m not. Until you’ve spent time with someone, and stared into their blank eyes and seen that they are no longer there because their brain has been mashed out, I just don’t care about your legal or academic arguments.

I’m glad the book I wrote about what happened to Matty is on a syllabus for law students. But what they should also do is go and spend a day with people who are never getting better. Artificial nutrition and hydration is wonderful, but it was invented to keep people alive for a few days so doctors could make a life-saving intervention. No one would have said when they developed tube feeding, “and we’ll be able to keep people alive for decades while their limbs twist up and their families disintegrate around them”. It is a travesty.

There are no good outcomes in these situations; it’s about damage limitation. It’s profoundly psychologically and morally confusing to realise that you want the person you love most in the world to die. Having to go to court is by no means the worst thing that happened to my family as a result of Matty being hit by a car, but it is one thing that can be changed. The judge is right. It should be, so others are spared that ordeal.

Cathy Rentzenbrink is the author of The Last Act of Love