Although death is certain, discussion around the topic is full of uncertainty. Here, Poorna Bell says it’s important to talk to our loved ones about death, before it’s too late.
It might be timeless and inevitable, but death is still muffled in stigma and silence – we don’t really talk about it until it arrives in our home. But paradoxically, we are also endlessly curious. We want to know more and ask questions, but we’ve never been taught how.
In an attempt to change how we think and talk about death, a cultural shift is taking place, pioneered by people who work in that realm between life and death. There is the award-winning podcast The Griefcast, run by actor and comedian Cariad Lloyd, who has reportedly just signed a six-figure book deal about death. Then there is next year’s book release of Life. Death. Whatever. by funeral director Louise Winter and end-of-life doula Anna Lyons, which contains lessons they’ve learned from working with the dying.
Palliative care consultant Kathryn Mannix, who wrote the 2017 bestselling book With The End In Mind, was one of the pioneers of this movement, and recently appeared on The Griefcast. Her episode received rave reviews and overnight she had 7,000 new followers on Twitter.
“In western society,” Kathryn says, “we’ve got so used to modern medicine being able to reverse illness. Death still has a 100% success rate – we’re just delaying dying. But we’re still not talking about it.”
When my late husband, Rob, died suddenly in 2015 in New Zealand, the decisions we had to make around his funeral seemed never ending. From deciding what to coffin to have to the music we’d play in the church – we’d never spoken about arrangements before, only what we thought happened to us after we die.
“You don’t believe in anything?” I remember asking him. “No,” he said calmly. “I think you just die, and that’s it.”
I made decisions based on what I thought he’d want, but also, what we wanted too. I wanted a burial, for instance, because I wanted a place where we could go and visit him, and I wasn’t ready to let go of him yet.
Despite all the arrangements we made for Rob’s funeral, I had never given much thought to my own, until I listened to a podcast a few months ago. It was called Life After The Letters, run by Dr Amile and Dr Suba, and was focused on the challenges that junior doctors face.
Not being a medical professional, I wouldn’t have listened to it, but I was contacted by an intensive care doctor named Jacyntha Khera, who’d reached out to me through Instagram. Jacyntha was drawn to previous articles I had written around grief and she asked me to listen to the podcast.
She had experienced the deaths of her brother-in-law Tej in 2014, and her father Narjan, who had a sudden cardiac arrest 2015. They died within a year of each other.
As I listened, my mind was blown because Jacyntha talked about having the chat with her family, and why it was important.
It never crossed my mind, for instance, that families can revoke organ donation even if you’ve signed the form, and that if you have a cardiac arrest, they have to make the call as to whether paramedics resuscitate you. Or even just knowing what someone wanted for their funeral.
As a doctor, part of her job was to tell the families of patients who had died, and ask them about their end of life wishes. She noticed that the ones who’d never had the chat were always more distressed. “This was in contrast to the families who had discussed it,” she told me. “Their relatives even felt at peace because they knew they were carrying out what their loved ones would have wanted in such a difficult time.”
Before her father died, she realised she’d never had the chat with her own family, and asked them over for Sunday lunch.
Three months after that conversation, Jacyntha’s father sadly did have a cardiac arrest, but she says it enabled her mother to make the guilt-free decision to not resuscitate as that was what he wanted.
I knew then that I had to have the chat with my own family.
After mustering up the courage, I sent them all an email outlining what I wanted to discuss, and said it was really important to me. The next 24 hours were tense but they all replied back saying they thought it was a good idea and I was taken aback. But perhaps I shouldn’t be so surprised – my parents are retired, and death is something that flutters against their life now from time to time, when they hear increasingly about friends who have passed away.
On a sunny afternoon, we gathered in my parents’ living room, with the rule that phones weren’t allowed. At the end of it, we’d open a bottle of prosecco and then go sit out in the garden, as an incentive. And over the course of an hour, we had the first discussion we’ve ever had as a family about death in terms of how it related to us.
We had to discuss cardiac arrest and whether we wanted to be resuscitated – it transpired my mother and I were clueless as to what a cardiac arrest was (we’d confused it with a heart attack – thank God we cleared that up in time). Then we discussed organ donation and what we wanted for our remains. It was a serious topic but we felt so much lighter having discussed it. At one point, there were even jokes.
Having the conversation when all of you are well, is completely different to when one of you is ill, says Anna Lyons. She advises trying to have that chat before it gets to that point, and to start having these conversations from a young age.
“We always want to do the best for somebody,” she says, “but if we’ve never had a conversation, we have no idea of what they would want. It’s a huge amount of responsibility for the family or partner. If we make it part of the every day and remove some of the stigma and fear, people would be having these conversations as an ongoing process.”
It isn’t just an important conversation to have, it’s one of the most important. And sometimes, it’s too late.
“I’ve met so many bereaved people who tell me they wish they had talked more,” Kathryn says. “I’ve never met anyone who wished they hadn’t had that precious conversation.”