Politics in a pandemic
When it came to funeral planning, my mother had only two requests. She dictated them to me a year ago, when she could no longer write. Margot wanted ‘no church but lots of music’, and she wanted her body to be ‘left to science’. When she died seven weeks ago in the middle of Melbourne’s lockdown, we were able to fulfil her first request, but the second proved impossible. The bodies of those who’ve had Covid19 are not currently welcomed by the medical research establishment. Instead, Margot’s death is being co-opted by those preaching a brand of politics she loathed.
On Monday the Victorian opposition leader held a press conference on the lawn beside state parliament. Around him was planted a battalion of small plastic Australian flags. The flags represented the 791 Victorians who had died from Covid19 – including, presumably, my mother – and were aimed at embarrassing the Labor state government. I know exactly what Margot would have said about this stunt: ‘Users.’
When my mother wanted to voice her disapproval, ‘user’ was about as strong as it got. Professor Margot Prior was a peacemaker. One of the many achievements of her long career in psychology was co-founding the Psychologists for the Prevention of War. She abhorred aggression, bullying and machismo. She found the selfish individualism at the heart of conservatism deeply upsetting. She was suspicious of the flag-waving nationalism embraced by the right. It would have made her sick to the stomach to know that the Opposition had traded on her death in this way. If Michael O’Brien had bothered to consult with grieving families before planting his forest of flags, we could have explained this to him.
A day earlier I was walking with a friend by the Yarra River. It was the 13th week of lockdown in Melbourne. Her face mask had slipped and was hanging from her ear. As she tried to wrangle it back in place, a passing jogger slowed to a halt beside us.
‘Don’t do that!’ he yelled. ‘You don’t need it.’
‘What do you mean?’ my friend asked.
‘There’s no such thing as the virus. Take off that mask!’
‘The virus killed my mother’, I said slowly and clearly. But he was on a roll.
‘Nothing killed your mother! It’s a hoax.’
I wanted to punch him then, right in the middle of his mask-less face. Instead I swore, turned and sprinted away before grief and rage got the better of me. ‘Punching people solves nothing’, my mother would have said. ‘And conspiracy theorists are lazy thinkers. They have no respect for the evidence.’
Science is complex. Politics is also complex, and humans are infinitely complex. To save lives in a global pandemic, you need to look carefully at how those three layers of complexity interact, using the best evidence available to you. Margot died after contracting the virus in a Victorian private aged care facility. As The Saturday Paper has reported, the evidence shows that the private aged care sector was woefully under-prepared for this health crisis. There were over 100 infections in the facility where my mother lived and, despite the best efforts of the dedicated staff, a dozen Covid19 victims lost their lives.
Here’s where things get even more complex. The word ‘victim’ doesn’t accurately describe what happened to Margot, because she was ready to die.
The last few years of her life were horribly hard. Diagnosed with Alzheimer’s disease at the age of 80, Margot understood better than most how the decline in her cognitive functioning would play out. That brilliant mind of hers had been honoured many times, as a fellow of the Academy of Social Sciences in Australia, an Officer of the Order of Australia, and with a Lifetime Achievement Award from the International Society of Autism Research. She had been Senior Victorian of the Year and was awarded an honorary Doctor of Science for her distinguished contributions to psychology research. Now her beautiful brain was disintegrating, taking speech, memory and the capacity for joy with it.
A decade earlier, Margot had prepared a Living Will. Her mother had recently endured a slow, painful death and Margot was determined to make sure her own life wouldn’t end the same way. My grandmother’s suffering provided her with the evidence she needed to fill out her advanced healthcare directive. It clearly stipulated that if she was diagnosed with a serious illness - including dementia - that left her independence and competence compromised and caused her psychological suffering, then she did not want any medical intervention or treatment to prolong or sustain her life.
After her Alzheimer’s diagnosis in 2017 my mother slid into a profound depression. She fished out her Living Will from the filing cabinet and pointed to the word dementia, demanding to know why she shouldn’t be allowed to die. Her suffering was contagious, and our family became singularly focussed on how to restore her will to live. We weren’t ready to let her go. With treatment, her depression eased a little and she worked hard to find meaning in an increasingly constrained life. A year later, though, Margot was diagnosed with bone cancer. This was her chance. If she opted for no cancer treatment, she would potentially have an escape route from the rapidly progressing Alzheimer’s.
What a dreadful choice - a physically painful death of limited duration, or a physically and psychologically distressing slow decline of unknown duration. My valiant mother struggled to decide and consulted her family. We suggested she try the treatment, keeping open the option of pulling the plug if she changed her mind. We still weren’t ready to let her go.
The balance was finally tipped when Margot was offered the chance to take part in a drug trial. If she participated, she could contribute to science. If the drug treatment failed, her death would at least provide useful evidence for her colleagues in the field of medical research.
Margot beat the cancer, but the Alzheimer’s was relentless. It made this calm, courageous, outspoken woman angry, fearful and inarticulate. In the final year of her life she repeatedly asked us why she didn’t qualify for the new Victorian Voluntary Assisted Dying Scheme. When the corona virus hit Melbourne, she was locked down in her aged care facility for many weeks. Prevented from visiting, my siblings and I sang to her over the garden fence, and our father spoke to her on the phone, but her illness made these conversations incredibly challenging.
Human emotions are complex and often contradictory. When my mother tested positive for coronavirus, I was terrified and relieved in equal measure. She was tormented by loneliness, confusion and physical disability. Loss of independence and competence. Psychological suffering. No medical intervention. It was all spelt out in Margot’s Living Will. Time to let her go.
Ten days later, my mother passed away. We held a small socially distanced funeral for her with no church, lots of music, face masks, funny stories and tears. In spite of my grief, it was one of the happiest hours I’d had in weeks. My family were together at last, and our precious Margot was no longer suffering.
Some right-wing commentators, including former Prime Minister Tony Abbott, have been urging governments to re-consider the value of an individual life in a pandemic. Specifically, they appear to be suggesting the lives of elderly people are less valuable than other lives, and could be sacrificed in order to re-start the economy. My mother was ready to die, but her husband is alive and well, and spends every day of the week helping other people. Margot would horrified by the idea that his life was considered expendable.
I refuse to concede my mother’s death to the politics of conservatism. She believed in kindness, equality and science. If her death in a pandemic can be used to inform kinder, more egalitarian, evidence-based policies that might prevent deaths in future pandemics, maybe Margot’s wish to leave her body to science will be granted after all.
This essay was first published in The Saturday Paper in 2021.