VAD: Making room for the messy, human experience of dying
I've always been fiercely interested in our right to die. To me it’s a no-brainer. Up there with human and reproductive rights. The right to agency over our own bodies. We humanely put animals that are suffering out of their misery, ergo the same should apply for people, yeah?
Yeah… nah.
I'll admit, I've had to work pretty hard to understand why other people might feel differently about this one.
Sure, I appreciate the concerns around elder abuse, about the possibility of people feeling like they’re a burden. I understand that some religious beliefs are fundamentally opposed to assisted dying. And I've heard plenty about the slippery slope… But I STRUGGLE SO BAD with the idea that someone else’s religious beliefs should determine how another person is allowed to die.
I stumbled onto Andrew Denton’s Better Off Dead podcast series early in my death journey, when I was mainlining as much as possible about anything vaguely end-of-life related.
He’s not one of Australia’s most acclaimed writers and broadcasters for nothing. His extraordinary ability to engage generously and respectfully with people whose views are diametrically opposed to his own is seriously unreal. (Meanwhile, I’m swearing out loud as I listen).
After watching his father die an agonising and drawn-out death, Denton established Go Gentle Australia in 2016, an organisation that has played an important role in advocating for voluntary assisted dying laws and amplifying the voices of dying people.
Last week, Denton addressed the National Press Club. Whether you agree with his position or not, I’d encourage you to listen to what he has to say. Check it out here.
Denton’s and Go Gentle’s work has helped shape my own thinking about how and where I want to make the most difference. We’ve spent years arguing for agency, establishing the legislative, regulatory, medical and operational frameworks that make VAD possible. And rightly so.
But with those foundations now in place, I believe there’s an opportunity to turn our attention to something that deserves far more consideration.
The human experience.
Because while VAD necessarily has a medical component, the experience of choosing how and when to die, preparing for that death, gathering the people you love, saying goodbye, and living with what comes afterwards, is deeply and profoundly human.
Part of the reason I’ve become obsessed with end of life, is because when the outcome is inevitable (as it is for all of us – no-one is getting out alive), the way in which we depart becomes SO important.
Sticking our heads in the sand doesn’t stop death. Not talking about it doesn’t stop it either. Thinking it will happen when we’ve finished doing everything we want to do doesn’t make it so.
Death isn't simply a medical event. (Some may argue it isn’t a medical event at all). It's a normal, natural and innately human one.
Recently, I was reminded of that through a conversation with someone facing the imminent death of a loved one.
There were questions. Slightly unpalatable questions that can be awkward enough to consider, let alone knowing who to ask. There was enormous anticipatory grief. Worries about the process, the medication and what would happen. And there was uncertainty about where to turn for support.
It’s not the first time I’ve encountered this tension around VAD.
When diagnosed with MND, another friend’s sister was approved for assisted dying. She chose to die soon afterwards, while her family were still coming to terms with her diagnosis.
I believe they remain both grateful, and traumatised.
And that’s the thing. Someone can be entirely at peace with their decision to die, while the people who love them may be still desperately trying to reconcile it.
This is the space I'm most interested in. Making room and holding space for the slightly messy, deeply personal aspects of VAD.
Next week I'm heading to Melbourne for VADCON, the Trans-Tasman Conference on Voluntary Assisted Dying.
I'm simultaneously excited and mortified at the prospect.
I'll be in a room filled with people - including specialist clinicians, researchers and policymakers - who've dedicated years, if not lifetimes, to this space. So while there's more than a little imposter syndrome creeping in, I’m trying to remind myself it’s okay to bring a different perspective.
I’m not a clinician. But maybe that's a good thing. My unique experience is grounded in something I’ve spent much of my professional life doing: designing experiences around people.
I’m interested in what happens when we stop approaching death as something that needs to be fixed, and start thinking about how we can make the experience of dying – in this case, by VAD – better for the person at the centre, and for the people love them.
I'm looking forward to listening, learning, having my thinking challenged and discovering where the personal and family experience of VAD can be better supported.
Because death isn’t a failure. It’s inevitable. And while we can’t change that outcome, we can influence how people experience dying.
We’ve worked so hard to make VAD possible. How do we now make that experience as authentic, compassionate and individual as the people at the heart of it? 🚀
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