Mum had what we call a ‘good death’. But a choice would have given her a better one | Gay Alcorn | Opinion
My mother was a vocal supporter of voluntary euthanasia, now politely referred to as voluntary assisted dying. She was a member of the Gold Coast chapter of pro-euthanasia group Exit International. A few years ago , she travelled to Melbourne to attend a voluntary euthanasia conference, picking up a T-shirt with the logo, “My Life, My Choice” that she wore with pride.
Mum revelled in life, her friends, her passion for the theatre, politics. She was in no hurry to go, but she was insistent that, should she contract a terminal disease, and if her life became intolerable, it should be her choice to end it.
In the middle of last year, she was diagnosed with acute myeloid leukaemia – a type of blood cancer – just before her 84th birthday. She was given three to six months to live, and specialists indicated her life expectancy was likely closer to three.
From that moment, mum received outstanding care through our public health system. Because she was too old for chemotherapy, she was offered palliative care and symptom control, with the aim of enabling her the highest quality of life possible in the time she had left.
Through weekly blood transfusions and a hotchpotch of drugs to control bleeding and to slow – but not halt – the raging cancer cells, mum lived remarkably well for six months. She gradually grew more tired, but she managed to travel by train to Cairns and then to Cooktown. She did a road trip to the mid coast of New South Wales, planned dinner parties with her friends and celebrated Christmas with family.
Mum had no self-pity. When asked by a social worker whether she was scared of dying and wanted to talk about it, she replied “not at all”. She felt lucky – we met many much younger people with the same disease. She never went to a nursing home, and never suffered the indignity of dementia. “Don’t be sad, it’s not all bad,” she would say.
I have always been cautiously supportive of voluntary euthanasia, as long as laws are carefully drafted with strong protections. Having watched the passage and demise of the Northern Territory laws in the 1990s and, more recently, the passing of assisted dying laws in Victoria in 2017, my niggling worry has been not about the principle of voluntary euthanasia, but about the world we live in.
An opponent of the laws in in Victoria told me his main objection was “capitalism”, and I knew what he meant. We underfund aged care now. We underfund palliative care, especially for people living in regional and remote areas. We live in a materialistic, youth-focused, productivity-obsessed country, and I feared that the old and the sick could feel redundant, unwanted, a burden, even if those around them would be horrified they felt that way.
Like it or not – and opinion polls show strong public support – assisted dying laws are now with us. A report into the first six months on Victoria’s laws has recently been released and found that 52 people used them to gain access to drugs that ended their lives.
The idea that palliative care is in inherent conflict with assisted dying doesn’t make logical sense, although palliative care groups are right to say that it is strange to pass laws allowing terminally ill people to end their lives when good palliative care remains scant for many Australians, particularly those outside big cities.
The two can coexist, with voluntary euthanasia being an option – just an option – for a person to end their life when their suffering becomes unbearable.
Watching palliative up close was revelatory. It is not just pain relief, as important as that is. Mum’s carers included occupational health specialists, who looked carefully at Mum’s home and made any adjustments needed. There were social workers, who kept an eye on Mum’s wellbeing and the wellbeing of her family carers. There were haematologists, palliative care specialists, and in particular, palliative care nurses from Anglicare who visited mum at home throughout her illness.
Her treatment team was competent and compassionate. They never patronised Mum, being most concerned about what she wanted, treating her always as an autonomous human being.
But as the leukaemia progressed and the decision was made to end transfusions, I saw the limitations of palliative care. For months, doctors called it the “sweet spot”, when pain is under control, but quality of life is maintained as far as possible. It was as much an art as a science – trying things out, reducing one drug, increasing another.
In those last weeks, the sweet spot became harder, then impossible, to find. Pain increased – for a couple of days so excruciating that Mum cried out that she wished she had travelled to China or Peru to get the lethal drugs discussed obsessively among euthanasia supporters. She mentioned ringing assisted dying campaigner Andrew Denton to lend any support she could.
In a palliative care unit at a Gold Coast hospital, that distressing pain was controlled with the right mix of drugs. The result, though, was that Mum was much drowsier and found it harder to speak. “I know what they are doing, they are putting me out,” she said, and she was right. The alternative was unbearable pain, so the choice was not a difficult one.
We brought Mum home to die, as she wished. About 70% of us want to die at home, but less than 10% of us do.
It’s hard – around-the-clock-care, fears of falls when moving Mum for showers, feeding her soft foods as she once fed us, agreeing to an all-night nurse when exhaustion took hold, particularly for my sister, who lived with Mum. But Mum lay in her own lounge room rather than a hospital bed. She could listen to the kookaburras laugh and the rain fall on the roof.
As days went by, the pain relief – morphine, basically – increased. She took it orally, but then when she could no longer swallow, it was administered through her skin, a subcut as it’s called. Then it was delivered continuously, 24 hours a day. And then the midazolam was added when Mum became agitated and seemingly distressed. Once, she did express worry that the drugs were putting her out of it, but really, there was little choice. For the last few days, she could not speak, could not eat or drink – we dabbed her dry mouth with a swab soaked in water.
As I sat next to my mother, listening to her raspy breath, I thought that I would not want to die like this, and I knew Mum hadn’t wanted this, either.
She had the best, up-to-date, enlightened palliative care on offer, and it offered so much. I cannot praise highly enough the care provided and the people who provided it. You can, even with cancer, die mostly pain-free.
But at the end, at least in Mum’s experience and for many others who tell similar stories, there is a good chance you will be knocked out with drugs to the point of unconsciousness when the pain becomes too great. That is the truth of it, and it’s in many ways a compassionate thing to do.
I have no doubt she would have sought the drugs had she lived in Victoria, where I live – we spoke about it when she was first diagnosed – but the laws are limited to local residents and she lived in Queensland.
I don’t know for certain whether she would have used the drugs, but I suspect that when treatment stopped and she came home to die, she would have. Who knows? The evidence from overseas is that many people receive mental relief from having access to the drugs, but never use them.
Mum’s death was what is called a “good death”, pain-free while the disease ravaged at the end. But some would say that while treatment and palliative care are fabulous to a point, beyond that point it is the patient who should decide. Mum always wanted that choice, and it was denied her.
• In Australia, support is available at BeyondBlue on 1300 22 4636 or www.beyondblue.org.au; at the crisis support service Lifeline at 13 11 14 or www.lifeline.org.au; and at Mensline on 1300 789 978 or www.mensline.org.au. In the US, Mental Health America is at 800-273-8255 or www.mhanational.org. In the UK and Ireland, Samaritans can be contacted on 116 123, or go to www.samaritans.org to find details of your nearest branch
• Gay Alcorn is a Guardian Australia columnist