We lost a remarkable man last week. Colin Clarke, an emergency doctor for 20 years and assisted dying advocate, died in Perth of mesothelioma. He was just 45.
There is nothing gentle about mesothelioma. At the height of its ravages, Colin – and his wife Lizz, a nurse – took time, precious time, to try and help Western Australia's MPs understand why there was a need for a Voluntary Assisted Dying (VAD) law.
Their messages – in writing, in interviews, in a video, and, finally, addressing a rally on the steps of WA’s Parliament House in the days before the debate – were compelling and human, and all the more powerful for being steeped in deep medical experience. They spoke of the death that Colin inevitably faced. The death that he didn’t want to put himself, or his family, through.
It is difficult to overstate the courage, and the sheer humanity, this effort required. As Colin’s two young children, Harry and Eva, grow older, we hope they will come to learn this of their father.
Colin received the best of care in his final days but, tragically, this was not enough. What he and Lizz feared came to pass. Lizz has given us permission to reprint a small piece she wrote describing what those last days were like for the husband, father, brother, and son, who she loved. Titled Still We Wait, it is as powerful an explanation of the limits of medicine – and the need for VAD choice – as you will ever read.
Wherever, and whenever, VAD is debated, we pledge to make sure Lizz’s words are heard, and that Colin Clarke is remembered.
Still We Wait
I’m so angry at the inevitability of what’s happening. Last week, this lovely man whilst terminally ill and accepting of the restrictions imposed on his body by cancer, was able to chat to his children, watch movies with them and eat a simple meal.
The ravages of this cancer are all too apparent. We moved into a hospice two days ago, I can no longer maneuver him alone. We both need the help. We all know that death is near, he has no respiratory reserve. He tells us “I want to die”. “This isn’t what we wanted”.
But still we have to wait.
It’s clear that he will get an infection. Most likely in his chest, because he aspirates gastric fluid several times a day. Or maybe at one of the numerous drain sites littering his abdomen where fluid build up has been drained. Sometimes four litres at a time.
It is clear he will get an infection. But still we wait.
We wait for the infection to take hold, to make him sicker.
We wait for delirium and incontinence, it's par for the course.
And yet still we wait.
We wait for his organs to stop working, for the skin injuries to become more painful.
We hear the rattle of sputum. He no longer has the reserve to move it from his lung.
We know it's a good reserve for bacteria, and yet still we wait.
We wait for this young man, their father, my husband, both a big and little brother, and son to his anxious parents watching close by. We wait.
We wait for all traces of independence to be lost. Dignity and privacy are preserved outside the room. The kindness of everyone in this place is unquestionable and reassuring. But here, he is laid naked to unfamiliar hands. Personal care is no longer that, but remains necessary. But still we wait.
I’m angry. I ask why we have to wait? His wishes were well known and documented. Why it is that we can sedate and wait, but we cant add just a little more of that or this drug. Stop this now? But still we wait.
We watch his personhood leave the room, but we wait for the final indignities. One more change and refresh, one more time being rolled with unfamiliar hands on skin. One more reassuring touch to his arm, empty in its promise. Yet, still we wait.
Why? For what purpose? To prolong this inevitable end? To extend the indignities a little longer?
And yet still we wait.
Lizz Clarke - June 2020