Last night I had the absolute honour to attend the Dying Matters annual lecture at the Royal College of Physicians. The theme You Only Die Once: Kate Granger’s story. Kate sent me a DM asking if I’d like to come a couple months ago, and I can honestly say I wandered around with a grin on my face for days.
It’s hard enough to explain to (some) people in my life the appeal of twitter, social media and all these people I’ve met on the internet. That’s doubly hard when I start babbling about Kate, it usually goes something like:
Me: Yeh, Kate, she’s a doctor, whose dying, and she’s amazing and she blogs and has written books about her experience
Person: Uhhhh huh, about dying?
Me: Yeh, you should read her books, they’re ace. I read them when Dad was dying.
Person: What, when you knew your Dad was gonna die you mean?
Me: No, literally when he was dying, I saved them up for when I knew I was gonna feel shit and cry lots anyway, but they were ace, really made me laugh and feel so much better about blogging our experience.
If you don’t know who Kate Granger is, you really should. Don’t worry I’m not going to go all Death Boot-Camp on ya, you don’t have to follow Kate’s story, I know some of you will be uncomfortable with her openness to discuss her death, but if you don’t know of her, at least check out her blog or her books (in fact why not buy one all profits to Yorkshire Cancer Centre).
Last year I wrote a blog post about the need to re-learn the art of dying, a phrase stolen from Kate herself. As someone who has spent a chunk of time surrounded by illness and death in the last five years, Kate’s willingness and openness to share her experience is like a tonic, doubly so because she herself is medically trained and in my experience many medics have as much difficulty discussing death as the rest of society seemingly do. Yesterday’s blog tried to suggest that the taboo isn’t as real as we’d be had to believe, today I guess I’m questioning that a tiny bit, but mostly as a result of some of the stories I heard last night. Stories of oncologists unable to talk of death, instead using the code phrase ‘when you’re very poorly’, hospitals uncomfortable having Dying Matters stands in public view, families who never come to speak out loud of the fact their relative is dying, often important conversations scrabbled and caught in the last few hours of someone’s life.
As much as I’m optimistic that we could, maybe some of us are, more open and comfortable than this, and as much as I acknowledge that last night was an audience full of the death brigade so a very skewed audience to hear and share these experiences (although one person was still desperately uncomfortable when I mentioned LB’s death in private conversation later – I guess negligence may be the last bastion even for those comfortable talking death – although several weren’t). Anyway, I digress, I guess last night reminded me of many of our own experiences as my Dad and my Grandad were dying.
We had some very similar experiences. I don’t think Dad’s oncologist ever mentioned death or dying and in the end we (my amazing Mum) had to self-refer to the hospice team once Dad, and we, thought he was past the point of treatment. The difficult balance between remaining positive and being realistic was also discussed, another experience that will stay with me for a long time, desperately not wanting Dad to think we were giving up on him, but wanting us all to be honest. Maybe, it’s exactly that which leads to oncologist to avoid the D word, maybe they can’t face their inability to cure someone, or maybe they just don’t want their patients to think they’re giving up on them.
Not sure, will muse further, but for what it’s worth my initial thoughts are that if as a medic you can’t mention and discuss death and dying then it leaves patients (and their family members) feeling like they’re failing you. Worst possible outcome for someone facing death is to feel they’re letting people down, especially medics who should be supporting them to plan for and have a good death. Speaking of which, last night was the world premiere of a new film made for Dying Matters by Kate and Chris, her amazing husband, who I get the sense has been pulled into a whirlwind of death, dying, tweeting perhaps slightly against his better judgement, or at least to support the woman he loves most in the world to have the life (and death) she wants. No mean feat in itself.
Kate and Chris recorded a film for Dying Matters. It made me cry, but that’s no bad thing. It’s a beautifully honest account of what they face and how they’ve prepared for it. I’d recommend watching, but maybe not one for your lunch break, or just before a client meeting, unless you want to kick start a conversation about death and dying there….and why not!