We need to direct our COVID-19 lessons to our dying and grieving
GroundSwell’s CEO Jessie Williams offers some reflections on what we have learnt through the coronavirus pandemic and how we can take these lessons into the future for a better end of life experience for all.
Image: Mike Erskine.
We are in a large experiment right now of communal thinking and feeling.
It’s important that this isn’t a moment, but a shift in how we do life, death and community. If we directed the same creativity, compassion and love to our dying and grieving that we are today extending to each other during this terrible pandemic, we would transform the experience of death and dying in Australia.
This pandemic has revealed we can do compassion. The world has paused normal life, not because of a war or natural disaster, but to protect vulnerable people from a virus. To manage, we’re enacting innovative, coordinated acts of kindness: video check-ins with friends who live alone, shopping trips for elderly neighbours, free courses, music ‘concerts’ on balconies to name just a few. In many locations, community groups have spontaneously emerged focused entirely on helping locally.
These examples we’re witnessing are what the end of life sector calls ‘Compassionate Communities’, communities where caring for one another in times of need, loss or crisis is a shared responsibility of everyone. We can’t afford to lose them once the threat of Covid-19 is over. We need to pivot them towards another shared experience which also threatens to overwhelm our healthcare system and too often leads to trauma and isolation. We need to direct our Covid-19 inspired compassion to our dying and grieving.
Working in the End of Life space, I’m regularly asked questions like ‘How can I break my dying mum out of her aged-care home? She doesn’t want to be sent to hospital for her final days, she wants to die at home.’ To be clear, this is a typical question I receive, and not one borne of Covid-19 and the necessary isolation and treatment of those with it. The last person to ask me this question was a man whose mum was dying of old age. A normal, everyday death, faced at a time when many of us don’t talk about death and aren’t empowered to plan for our own death or advocate for someone we love.
Contributing to this disempowerment is that death in Australia is highly institutionalised. Our dying today are relegated mostly to medical and residential facilities. “Who”, many people ask themselves, “am I to disagree with the experts on the care of my loved one?” If death were just a medical event, that might not be such a bad question. We all, however, know that death is so much more. Global research tells us, while being comfortable is important, connection is also vital to the dying and their loved ones. In Australia, most people want to die in familiar surroundings. Seventy percent of our elderly want to die at home, yet only 14% do. These are cultural norms. They are not inevitable or the best ways to manage death and dying. These norms are traumatising many of our dying population and consequently intensifying the grief of those left behind.
Let’s imagine if the information sharing and compassion we’re witnessing now due to Covid-19 is maintained and extended to carers, our dying and our grieving. In that scenario, the son who called me would know his mum has the right to die where she wants. He’d be embedded in a Compassionate Community that helps him manage that. He’d know how to find the equipment he would need to keep his mum comfortable. Perhaps he’d contact his local end of life doula to help with that (yes, that really is a job – there is someone in your community who helps people navigate how to die comfortably and according to their wishes). There would be someone locally aware of his situation who would mow his lawns and bring him meals so he can focus on his mum. His mum saw a free webinar last year on ways to say goodbye. She prepared her farewells and documented her Will and final wishes. He and his mum would be so prepared, he’d be able to say to her residential carers: “We’ve got this. You can let us go and focus your stretched resources where they’re needed.” He’d know that if he and his family want to sit with his mum after she’s died, to not be rushed, but pause, talk, be still, cry, laugh – whatever it is they need – they’d know they can do that too and they’d even have equipment to help with that.
This scenario is a good death and one enabled by innovative kindness. You’ll notice it’s not one that leaves it up to our health professionals alone. They have enough to do and are now dealing with an ageing population on track to quadruple by 2055. Nor does it make caring the sole responsibility of aged care staff, or the solo job of an adult daughter (caring is highly gendered).
COVID-19 is showing we all have a place in a compassionate community if we want one.