After reading about recent misuse of DNRs, people being refused treatment, and people being asked to refuse treatment, I’d had enough. And then a medical professional asked me if I would like to have a discussion around “ceiling of care”. Nope nope nope nope nope nope nope nope nope nope nope NOPE!!!!!!!
I cringe when I see TV programmes showing doctors or relatives saying “It’s what they would have wanted”, though they’d never asked the person. “It’s kinder, really…”, though quality of life isn’t meaningfully discussed, and seems to mean different things to different people.
Do I trust every doctor that I will ever meet to have the same views as me? No. Can I then trust them to make the decision that I would make if they were in that position? Definitely no.
And so I’ve written to my GP. A brief covering letter lay on top of:
– My COVID-19 Advance Care Plan (template available here: https://www.england.nhs.uk/coronavirus/publication/advance-care-planning-guidance-and-template/ )
– A document of my own devising, setting out that I absolutely would want and expect treatment in a range of situations, who to call if a decision needs to be made on my behalf and, of course, Please Always Resuscitate Me. In short, I expect full treatment.
When I mentioned this on Twitter, a request came in (Hi CL!) for the non-personal bits to be shared in the hope they may be helpful for others. Your wish is my command.
Please note: I’m not a medical professional, or a lawyer. This document isn’t a template, it’s a conversation starter, and possibly ender. I wanted to get something on the record quickly. When I can once again roam free, I may get a lawyer to double check everything and make it as binding as possible. For now, it’ll do for me. It’s dated and I’ve signed every page. Please speak to your medical team or a lawyer if you would like something more formal.
Here it is: Advanced directive details removed
You’re welcome to use any part of this to create your own document advocating for your own right to fair treatment.
My only request is that if there is a treatment you wish to decline, please do not listen only to medical professionals’ view of a quality of life they’ve never lived, or something you saw once in a movie with no disabled writers or actors – instead spend a couple of months following a few bloggers or Instagrammers who have had that treatment, and then make your judgement based on real-life first-hand experiences, not from a vague remembrance of an outdated medical textbook or the unimaginative inspiration porn from the mind of a cash-seeking Hollywood director. You’re worth more than that.