Geeks Vs Loneliness: turning off life support

One of the loneliest decisions anyone can ever have to face: when to turn off life support...

The brief introduction: this is a series of articles where we just want to pass on a tip or two, or just talk, about issues that may be getting some of us down. Not every one will apply to you, granted, but maybe there’s something in these pieces that’s affecting someone around you. Please also feel free to comment below, and leave suggestions. Many of the discussions that have taken place around the topics we’ve talked about have been far better than anything we could have written.

Talking of pieces far better than we could have written, this week, we’re handing the reins over to the wonderful Jane Roberts.

It’s worth stating up front that this is, as you might have guessed, a very, very tough topic.

Neil Gaiman got it right in The Kindly Ones. The part where Rose Walker writes in her diary and comments ‘I’ve been making a list of the things they don’t teach you in school. They don’t teach you how to love somebody… They don’t teach you how to know what’s going on in someone else’s mind. They don’t teach you what to say to someone who’s dying. They don’t teach you anything worth knowing’. 

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What do you say to someone who is dying? It’s one of the hardest challenges I’ve ever faced. It shouldn’t have been. The person in the critical care bed was my dad, with whom I’d had a sometimes difficult relationship but who was ultimately irreplaceable in my affections.   

It has been just over two years since he passed away. Two years in which I’ve experienced guilt and self-recrimination greater than any before in my life. Walked to the edge of a breakdown.

I turned off my father’s life support. The permission, the decision, the moment was of my choosing. I would make the same decision again if I had to.

I received the phone call early in the morning. When the consultant calls you personally and won’t tell you the situation you know it’s bad. Just how bad became clear when I got to the hospital. My father had collapsed with chest pain. They’d worked all night to save him, but by the time his heart kickstarted into a proper rhythm his body had gone into multi-organ failure.

I fought to stay calm, rational. I felt like I was viewing the world through cellophane. The doctor was treating me as an intelligent human being. I made myself act like one. He explained the medical effects of the resuscitation, the prolonged starvation of my dad’s brain of oxygen. His heart had been restarted but his brain – his great big, smart, wilful, curious mind – was forever extinguished. His body was alive only with the intervention of machines that performed basic functions for him. Like breathing.

I could see what he was building up to. The question he was going to ask me. It’s a question I pray nobody reading this ever has to answer on behalf of another.

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He asked me for my permission to remove life support. To effectively terminate my Dad’s life. I remember my unhesitating answer. I didn’t even think about it. I told them to let him go.

I remember the look of relief on the doctor’s face. How many times must that poor man have played out this scene? How many differing reactions must he have seen?

And with infinite care and tenderness the doctor withdrew life support, my husband and I at my Dad’s side. I didn’t know what to say to Dad other than I loved him. I put my hand on his forehead and my face on his shoulder. And we let him go.

My father adored me. He’d also told me many times that his greatest fear was loss of independence, of being rendered incapable. I couldn’t leave him like that, in limbo. It was easy to respect his wishes. It is infinitely harder to live with the consequences.

I rang my sibling, who was overseas, my dad’s sheltered accommodation warden, his deceased partner’s son. I told them all the same thing, that Dad had suffered multi-organ failure as a result of cardiac arrhythmia and that I had been with him when he passed.

And this was the truth. With one omission. I told nobody that I’d had to give permission for life support to be turned off. I know one of them would have found that horrific. I couldn’t face the recriminations. I think until you face the horrible, horrible in-the-moment choice yourself, you can’t even begin to understand how profoundly it can affect you. I felt guilty in a way I’d never felt before.

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You may wonder why I’ve written this article. Well, Geeks Vs Loneliness has been a huge support to me over the past two years. It has covered loneliness, anxiety, depression, and grief. I’d looked for a grief support group specifically helping those who’d made a similar decision but couldn’t find one. Grief forums seemed squeamish about this subject – though please correct me if you know of any that can help.

It feels like a hidden topic, possibly because it can lead to such an emotive response and many people believe that life should be preserved if there remains a spark. GvL was the first place where I very tentatively commented on how badly this decision had affected me and I am grateful for that because at last I’m beginning to deal with the guilt. If this article helps just one person in a similar position know that they are not alone then it has achieved its purpose.

We don’t talk about death enough. We don’t really want to think about it. I am forever grateful that my Dad had been very clear on his wishes of what to do. From a personal point of view I’d want someone to take the same decision for me, were I ever in his place – but many people wouldn’t. At what point can we stand to let go?

People who’ve been in a similar situation to me will have reacted in many different ways, and all of them are valid responses. We can only respond to our own circumstances, our own truths. That day, my truth was to honour and action my Dad’s wishes. I know that now. I hear my Dad’s voice sometimes, and his infectious raconteur’s laugh. Wherever he is, he loves me still, and it’s sent back in spades.

Thank you for taking the time to read this article.

For further support on dealing with grief you can contact Cruse in the UK on 0844 477 940 or at  Your GP will be able to advise you of local support and counselling services.

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