We will all die. Some of us through illness or frailty – a scenario we call “predictable death”.
There are about 100,000 predictable deaths in Australia each year, and most commonly it is a daughter or a wife that steps into the role of primary caregiver. It’s arguably one of the most demanding roles anyone will step into… it’s also one of the least supported.
In early 2009 my husband, Mauro and I welcomed our third child. That same year he was diagnosed with an aggressive cancer disease.
He died just 15 months later aged only 40.
Given how close the two events were, it was impossible not to compare the support and communication we received, and the preparations we were then able to make. Unfortunately, the experiences were very different.
The journey of bringing our children into the world was one of joy and community. Conversations flowed between Mauro and I, friends and family – even business associates. When I was heavily pregnant with our first child, I remember being in a business meeting and having a colleague offer her birth story.
This culture of open communication and experience-sharing helped Mauro and I paint a picture of birth. Having the right information, both emotional and clinical, allowed us to plan and prepare for that experience, supported by friends, family, midwives and our medical team.
All three of our children were delivered via water birth, which we understood would come with some risks. Mauro and I had many questions as we weighed these possibilities. Our medical team was patient and offered clear advice on our options.
Importantly, these conversations were equally addressed to my husband and me – even though I was the person carrying the child. All of this helped Mauro and I decide on a birth plan we believed was best for our family.
It takes a village to raise a child. The same is true when caring for someone to their death. While both experiences are universal, the systems and cultures of support are very different between these two life stages.
Parents-to-be are part of a system that anticipates your needs and passes you to the right stage at the right time. While not perfect, in pregnancy there is a clear practice of consultation and clinical support; it’s a process designed to educate you as you move through it.
As daunting as it may be, you build an understanding of where you’re at and what’s ahead. This allows you to have necessary discussions and make the right plans.
I don’t think I could say there was any planning or preparation in the 15 months between Mauro’s diagnosis and death. Instead, I felt as though we were being bounced around the system. There was a tumultuous series of guarded and often siloed conversations with different specialists, and very few of these conversations included me, though I was his wife and primary caregiver. I had to force myself into the process.
Without knowledge, there is no way to prepare.
While I understand there are many more variables on the road through cancer than the one through birth, why can’t there be an experience designed around preparation and support similar to the one Mauro and I experienced during my pregnancies?
I remember us together in a birthing class, being told very explicitly what would happen to my body during labour. There were confronting moments, joyous ones – even awkward ones, but we moved through each with love and grace knowing that we were being educated, supported and prepared for the hours that lay ahead of us.
Weeks before his death I was handed yet another prescription by an oncologist. At this stage, Mauro was in a wheelchair, on oxygen and slipping in and out of awareness. I held that script in my hands, utterly confused, and finally found the power to speak up, “I need someone to be honest with me.”
The specialist struggled to make eye contact, then mumbled, “8 weeks.” And that was it.
Up until that point, I had no awareness that Mauro might soon die. Right until the end the focus was on the next treatment – on recovery, or at least stabilising his condition.
In retrospect, what we needed was clear, but kind, acknowledgement that my husband was now in the last stage of life – that he was sick enough that he might soon die. End of life is a life stage that is as crucial as the beginning of life, and it requires the same recognition, communication, planning and support.
As hard as it would’ve been to hear, an early understanding of what could lay ahead for us would have given us the room to process and prepare. Just as we had discussed goals and risks with the birth of each of our children, we should have had similar discussions about Mauro’s illness.
If we had, maybe the end would have looked closer to what he’d hoped for: at home, with his family and close friends, surrounded by love and care. Not enduring multiple surgeries right up until his death.
Imagine if we gathered around caregivers the same way we did new parents – from every corner of the community.
That’s the mission I carried away from my experience caring for Mauro and it has led me to my role as CEO of The Violet Initiative. Violet is a social change organisation helping more Australians die well. We support caregivers, clinicians, aged care workers and organisations that intersect with this life stage, like banks and insurers; with the goal of better preparing people to make critical end-of-life decisions. We hope that one day soon, the last stage of life will be formally recognised and that the emotional needs of those in this life stage are prioritised as much as their clinical ones.