I can vividly remember the moment my doctor told me that a scan had found cancer in my liver. Just two weeks earlier a ‘precautionary’ colonoscopy had resulted in a surprise bowel cancer diagnosis, but my doctors had been confident we’d caught it early. The fact cancer had now been found in my liver was a game changer. This meant it was much more advanced than first thought. It meant I was ‘stage four’. The four ‘stages’ of cancer are defined by the extent to which it has spread. Stage four means the cancer is ‘metastatic’ - it has spread not just to adjacent tissue, but to other organs distant from the primary tumour.
It was August 2017. I was 35 and life was otherwise good, in fact it had been great. Eight months earlier we’d welcomed our third child into the world, a beautiful little brother for his two sisters. He was born in California but not long after his arrival we made the move back to Sydney. We’d loved our four years in the US but felt it was time to be closer to family. As it turned out that was a very well timed decision.
Just 3 weeks after popping into the GP for what I thought would be a routine visit, I was starting an aggressive treatment regime that combined radiation and chemotherapy. The goal was to shrink my primary bowel tumour as much as possible before surgery that would remove the affected section of bowel and half my liver. My surgery plans were nearly derailed after I suffered a major blood clot - a bilateral pulmonary embolism - which ultimately resulted in my lungs partially collapsing. The surgeons would only agree to proceed with the surgery if I had an IVC filter installed - a shuttlecock shaped filter inserted through my neck and pushed into position in the major vein near my heart - designed to catch any blood clots that arose during or after surgery.
The 11 hour surgery went well. For 6 months after I would have an ileostomy to allow my bowel time to heal. The bottom of my small intestine was pulled through a hole created in my abdomen into a bag which I’d have to empty several times a day. During this time I also did several more rounds of chemotherapy.
Any advanced cancer patient will tell you that the battle is as much mental as it is physical. Statistics were telling me that 85% of people with my diagnosis would be dead within 5 years. My doctors encouraged me to think of it more as a 50/50 chance.
The trick for me was - and still is - to find a balance between optimism and pragmatism. On the one hand I needed to believe that all the treatment would be successful despite the odds. On the other hand, I was a husband and a father to three young children and that demanded some pragmatic realism and some planning. Between treatments I prepared. Beyond the usual stuff - refreshing wills and granting Amelia, my wife, power of attorney - I started recording videos for my kids. I wrote a manual to our home and life with all the things I thought Amelia might need to know if I wasn’t there.
That planning also extended to my death. To prepare properly I needed to understand exactly what would happen in the scenario that my treatment was not successful. I asked my GP what would happen to me in different scenarios. I went to visit the palliative care facility that I would likely be transferred to in the event my condition deteriorated to the point I couldn’t be cared for at home - Neringah Hospital in Sydney’s North. I spoke to the staff there about how a death typically unfolds but left with a few lingering questions, and so I kept researching.
I read more on palliative care and I reached out to a few ‘death doulas’ - people who assist the dying and their families in the final stages of life. Like many I had some prior exposure to death, not all which had been good. My grandparents had generally passed peacefully in their sleep, but I also had relatives and family acquaintances who had suffered a great deal as a result of motor neurone disease or extended battles with cancer. Largely because of those latter experiences I had been an in-principle supporter of medically assisted dying for some time, but now I found myself thinking in detail about my own death.
As someone with cancer you tend to meet a lot more people with cancer - in waiting rooms, in chemotherapy wards and in support groups (though personally I wasn’t a fan of these). Speaking to those fellow travellers with advanced disease I found that many of us shared a fear of what our deaths might entail, and what it would mean for our families. Those of us who were young parents harboured a very special kind of fear, about how our kids would experience our deaths.
Perhaps the most emotional point of my entire cancer journey came one evening when my then 5 year old daughter refused to leave after visiting me in hospital. I was heavily dosed with Fentanyl at the time, a powerful painkiller, and its hallucinogenic side effects combined with the sound of my little girl screaming “I want my daddy” down the corridor sparked an overwhelming sense of panic in me about what my death might mean for my children.
All my conversations and research consistently led me to the same conclusion. Palliative care can ease any suffering associated with death for the majority of people, but there is a small minority of cases where the nature and / or extent of that suffering simply cannot be managed. For this small group of people death can be horrific. No disease is the same and no patient is the same. You can’t know if you’re going to be part of that small minority, and therein lies the fear. I wanted to understand what the options were for people who found themselves in these terrible situations.
I began to research end-of-life choices and quickly discovered that any form of assisted dying was illegal in NSW but I was excited to discover that a private members bill was already in the works and that legislation was also moving forward in Victoria. Naturally I paid close attention. I devoured the report from the cross-parliamentary inquiry in Victoria, and I looked at reports on how similar legislation had been operating very successfully in other parts of the world. For example the ‘Death with Dignity Act’ has been operating without issue in six states in the US, in some cases for decades.
I was still on leave from work and doing regular chemo cycles but I made a point of joining a group of supporters of the NSW bill in front of state Parliament in the week it was introduced. I was devastated when the bill failed to pass in the Upper House. I was also a little shocked. Any poll ever done in NSW - and there have been many over the decades people have been fighting for this right - showed community support for assisted dying for terminally ill people at 70% or higher. Some of my faith in the political process was restored when the Victorian Parliament subsequently passed their legislation.
In the process of trying to understand why the NSW bill failed my curiosity quickly gave rise to anger. I spoke to a number of MPs and to the organisations involved in fighting for the NSW bill - Go Gentle Australia (founded by Andrew Denton after his fathers death) and Dying with Dignity. What became immediately clear was that while this is not a particularly controversial issue in the general community, it is a right that is strongly opposed by powerful religious organisations in NSW. To be clear - most research shows that even people who identify strongly with any religions generally don’t oppose the right of terminally ill people to access assisted dying. It is the institutions themselves - the Catholic Church and its peers - who have generally mounted well resourced, coordinated opposition to assisted dying legislation. In private, MPs would explain to me why certain members of the upper and lower house in NSW would have to vote against the right because of direct or indirect connections to these religious institutions, even if their constituents or indeed their own conscience, would otherwise lead them to support the right.
I’d been back at work full-time for ten months after my initial treatment when a scan revealed cancer had returned to my liver in January 2019. This wasn’t a huge surprise. My doctors had advised me to leave my chemo port in place because my odds of recurrence we’re so high. I took a month off to have another large section of my liver removed, declined further chemotherapy after being advised it would have little impact, and went straight back to work full-time. I started a new intensive surveillance regime - scanning every 3 months - and despite the odds being stacked against me every subsequent scan has been clear.
In the last year two years the right to assisted dying for the terminally ill has gained huge momentum in Australia. The Victorian legislation took effect in June 2019 and over a hundred people have been able to access the right to assisted dying there. Doctors and families are reporting amazing stories of patients being liberated from suffering and fear, and finding peace in their final days. At the end of 2019 WA became the second Australian state to legalise assisted dying. Their law takes effect in mid 2021. In December 2020 Tasmania’s House of Assembly unanimously voted for their End of Life bill. In Queensland, the recently elected Labour government, who campaigned on the issue, committed to bringing a bill before Parliament by March 2021. In their October referendum 65% of New Zealanders voted to support the End of Life Choice Act, which will now become law in November 2021.
Yet here in New South Wales the issue remains too controversial, if only for our politicians. I’m now told by those inside Parliament that the Berejiklian Government expended too much political capital on the Abortion Law Reform Bill and is too worried about upsetting its more conservative factions to risk support for a bill on assisted dying for the terminally ill.
What makes this all so galling is that NSW MPs known to be opposed to assisted dying - members of the Christian Democrats and Shooters, Fishers and Farmers parties for example - hide behind untruths. They talk about the “risks” of legislating for this right in NSW - they rave about the potential for everything from elder abuse to a ‘slippery slope’ of suicides - knowing full well that 200 million people around the world have enjoyed these rights for a long time and none of these jurisdictions have experienced these issues. They also know that the NSW legislation would include stringent safeguards.
While they morally posture people are suffering. It’s estimated that a significant portion of suicides are attributable to people with terminal illness trying to end their own suffering - often clumsily. There are also stories of people who, like Peter Nixon in Queensland, find themselves accused of serious crimes simply because they are trying to afford their loved ones a dignity in death that our politicians are too cowardly to provide. Then there is the far larger group - to which I belong - who continue to suffer from the fear that comes from not knowing what their deaths might entail.
This is not about legalising suicide, as some opponents seek to position it. Assisted Dying legislation is about giving people who are facing the prospect of suffering a rationale choice. It is not a choice between life and death. It is the choice of a terminally ill person about the manner and timing of their death (which is imminent and inevitable) and the level of suffering that must be endured.
The situation in NSW is only allowed to continue because of our collective apathy. Our politicians can only ignore the issue as long as they think their constituents won’t make it a political issue. The irony of that is that death is a uniquely universal issue. While it may touch some of us sooner than others, every one of us has a vested interest in ensuring that our legal frameworks support compassion for the dying.
Please take a moment to let your local MP know that this is not an issue than can wait for future governments to solve, and sign the petition.