In January 2009 Mauro and I welcomed our third child. Later that same year, he was diagnosed with an aggressive cancer disease. He was only 40.
To say that we couldn’t make sense of what was happening is like calling a hurricane a hand dryer. Not only did everything change in an instant, we lost the tools we once had to communicate openly. Deep down we probably both knew we needed to broach some complex and emotional conversations, but we couldn’t bear it. My silence was driven by a self-imposed directive to “stay positive”, and with that came the denial that he was in the final stage of his life. That he might be sick enough to die.
So, there were no honest conversations. Not between ourselves, within our families, or with Mauro’s medical team.
In the last months of his life, there were repeated ambulance calls and hospital admissions. There were treatments and surgeries. And when he died, he was in an intensive care setting. It was clinical, it was impersonal and if we had understood the reality of his situation, he may have chosen a very different path. As his wife, and main caregiver, I didn’t know how to manage what was going on or prepare for what might lie ahead.
I came out of that experience holding a lot of regret.
My experience led me to my role as CEO at The Violet Initiative, a social change organisation transforming the final stages of life so that more Australians are better prepared to die well
Andrew Macpherson, Violet’s Chairperson points out that, unfortunately, my story is not a unique one, “The sad fact is that over half of the 100,000 predictable deaths each year in Australia have regretful outcomes - the person dying did not receive the experience that they wanted.”
The impact of regretful death
Regret is a very personal emotion, but it carries widespread costs for families, businesses, the health system - for the whole of society. For those of us left behind that means a higher chance of complex bereavement and trauma related to the experience. And for the economy it means a billion dollars in costs and rising in line with our aging population.
Many people aren’t having the end-of-life experience they want.
The sick or frail person can end up spending increasing amounts of time in hospital, our least preferred place to be. On average we spend 33 days in hospital in our last year of life - and over 30% of us will receive non-beneficial treatment (NBT) through this time (KPMG, 2020). Sometimes this can be due to family conflict around the best course of action. “Please, do everything for mum,” is the common plea. But the truth is that Mum is 92 years old, very frail, and coming naturally to the end of her life. She may prefer the comfort and familiarity of home, or a home-like setting.
Ken Hillman, Professor of Intensive Care at the University of New South Wales, and a member of Violet’s Clinical Committee, is often a witness to the gap between what people hope for at the end of their lives, and what actually happens to them. “When speaking to relatives about their dying loved one in intensive care, they will almost always say that nobody had told them that their relative was close to dying. The grieving process is limited to a few hours or days, often resulting in long lasting regret. People need to have these honest discussions as early as possible. An organisation such as the Violet Initiative is then able to accompany them on this difficult journey.”
For health professionals, and other organisations whose work intersects with the last stage of life like aged care, trauma and distress are on the rise.
In a recent study by the Queensland University of Technology shows that over 90% of aged care workers have experienced moral distress related to end-of-life care. And over 70% have never received education or professional development relating to moral distress.
A close friend and resident nurse (who asked to remain anonymous) shares her experience, “I’ve been in aged care for over 20 years and no one ever asked me how I felt, dealing with death and dying so often in my job.”
While death is inevitable, the regret caused by a lack of acceptance, communication and planning in the last stage of life can be reduced.
The truth is, the sooner people are supported - especially those who are in the primary caring role, the more the sick or frail person benefits.The caregivers are often the key influencers and decision makers - the ones who can drive the critical conversations, and advocate for a plan that marries their loved one’s desires with the reality of what’s ahead.
I’ve witnessed this firsthand in those we have supported through Violet. Sandra, who is currently caring for a family member with a terminal illness has found Violet’s free, over-the-phone, Guided Support program transformative, “Everything is more clear. I’m taking action rather than being frozen in fear.”
The New Truths
At Violet we call the necessary changes through the journey of death and dying our new truths. We hope these truths, like seeds, plant themselves into the hearts and minds of all Australians - including the government and private business.
- The last stage of life is, and should be recognised as a life stage, we need to talk about it, plan for it, and be supported through it
- All predictable deaths (100k pa) will go through the last life stage whether frailty or terminal illness brings them there
- The last stage of life is a human experience, with clinical and non-clinical needs. Both need to be adequately addressed, we should strive to better educate and support people in this life stage and those around them
“The reason I accepted the Chairperson role at The Violet Initiative was that both my parents died recently, and the experiences were challenging for my brother and I,” Macpherson shares. “Typical boys; we did it on our own and didn’t reach out for support.”
And nor did I.
From a heartbreaking experience came clarity. We have to do this better. For everyone. That’s why I became the CEO of Violet, and why sharing my story is so important.
But it will take all of us to create a country where families are more prepared and supported, and better able to make decisions that are right for their circumstances. Where our clinicians, and health and aged care staff feel more capable and willing to have complex and sensitive conversations about the last stage of life. Where more Australians get the final stage they hope to have.