A message from Euan – I still have a desire to live

Coronavirus has given people permission to judge how valuable another person’s life is and threatens to undo decades of progress around the rights of disabled people. Euan MacDonald, Co-founder of Euan’s Guide shares his feelings on the matter:

It's not often you come across a newspaper article that perfectly encapsulates your feelings and personal experiences as well as one that I came across almost a decade ago. Its title is “They asked me why would I want to live” and it was written by Simon Fitzmaurice, describing his desire to carry on living with Motor Neurone Disease (MND).

For Simon, his desire to live meant being tracheostomy ventilated, which is contrary to the usual medical practice in Ireland and many parts of the UK. It is particularly relevant just now as the value of people's lives is being questioned - and the priority of some receiving medical treatment over others is being assessed.

Since lockdown measures were introduced, we’ve seen some reach their conclusion. Whether it's Toby Young or the Welsh GP who encouraged people on the shielded list to fill in "Do Not Resuscitate" (DNR) forms, there is a minority who have already passed their judgement. The Welsh GP withdrew that advice after much criticism, but it wasn't an isolated case.

Toby Young went further. He argued the lockdown is too costly - and that the NICE system of evaluating the cost worthiness of a new drug, should be applied to the level of Government spending on this pandemic. That equates to £30,000 for one person per year. He concludes, "In the unlikely event of the NHS being overwhelmed, the majority of people whose lives could have been saved only have one or two years left and those will not be good years."

I can't speak for every disabled person or everyone on the shielded list, but it has been an unsettling time. People I know are deeply concerned. How do you quantify the value of someone's life, assess their quality of life and prioritise it against someone else's? How do you fight perceptions that the disease you are facing makes your life not worth living? Perhaps perceptions of MND are influenced by people with MND who have campaigned to be able to legally end their life with assistance. But being sympathetic to that cause isn't mutually exclusive to supporting the cause of those wishing to live.

Or perhaps it's about the language used. Certain phrases have become linked to MND - "wheelchair bound", "bed ridden" or "a prisoner trapped in their own body". Emma Moss, in her blog titled Mummy with MND, writes of that last phrase, "Whoever is responsible for that phrase becoming inextricably linked to MND deserves a poke in the eye with a rusty fork."

For Simon Fitzmaurice, his neurologist posed the question directly. "Why would you want to ventilate?" "Why would you want to live, having Motor Neurone Disease, not being able to move your arms and your legs?" Indeed many might not wish to ventilate and they may put that into writing. I was one of them. When I was diagnosed with MND at the age of 29, the thought of living with a ventilator 24/7 filled me with fear. It's very different, however making a decision about an abstract time in the future. When push came to shove the realities of the situation and my life were clearer and I changed my mind. I wanted to live with every fibre in my body.

That's only a part of the story though. Just deciding you want to live with a tracheostomy and a ventilator doesn't mean you will automatically get one. Your doctor has to agree to do it. An overwhelming majority of neurologists in the UK advise against it - partly for adjudged quality of life reasons, partly for practical reasons like the cost of care. It's a lot more common in the US and Japan. So for me, I was just lucky to be in the right place at the right time - with a particular ICU doctor and a home ventilation team who said they would support me. If I lived in London, if I lived an hour down the road, or even if I had had a different doctor in the same ward the outcome would likely have been different. As Emma Moss again describes it after being told to "consider the burden" of living with tracheostomy ventilation, "I am already being coached, cajoled and swayed in to gently accepting my death."

So blanket DNRs are a very blunt tool. Advance directives and living wills can change. But assumptions are still made. Last month my GP practice sent a letter to their patients saying:

"We aim to provide the best possible care for you and your loved ones that we can, but we need to be frank about the realistic outcome if you are unwell enough to need hospital level care from COVID 19 infection. If you have significant health problems already, then it is sadly unlikely that being admitted to ITU with COVID 19 will save your life."

Nobody is saying these conversations are easy. There is an undeniable health crisis. But too many people have fought too hard and overcome too much to give up during the current situation. That side of the story is important. Not just for us but for the people who rely and depend on us.

So that's why finding Simon Fitzmaurice´s article all those years ago had such an impact on me. I wasn't alone, I was walking in his shoes. I was experiencing the exact situation he had. I will always feel an affinity towards Simon despite having never met him. I'm grateful he was able to express my experience in far better words than I ever could.

What's so important? What have you got that's worth living for? Simon had already answered those questions - "Love for my wife. Love for my kids. Love for my friends, my family. Love for life in general. My love is undimmed, unbowed, unbroken. I want to live."

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