My mother Gail Carbone had a terminal brain tumour and passed away on 13 January, 2018.
She was pro choice and strong in her opinion. She was always saying "I want to have a choice to go or do or undertake the treatment that I want. I don’t want to prolong my life if I’m incapacitated or I don’t have the capacity to make decisions or I’m incontinent".
She was angry that she didn’t have any choices and that she may have had to engage in illegal practices to achieve her outcome and maintain her choice.
I have no doubt that if voluntary assisted dying had been legal, she would have gone down that track
Mum formulated her opinions long before she had a brain tumour. About 20 years ago my grandmother had bowel cancer and was in hospital on and off for 18 months. It was a slow death. Mum worked full time and was there every day after work then she took time off to spend with my grandmother in hospital. My Mum’s views formed then. Even my grandmother didn’t want to prolong it, but didn’t have any avenues that she could pursue.
My Mum was diagnosed with a brain tumour about four years before she passed away. The diagnosis was terrifying for her and our family. There was no certainty about anything. She had to go in within a week or two for emergency brain surgery and you are told straight away of the risks and one of the risks is dying during surgery. It was a very traumatic experience. A lot of people were visiting her thinking "This is going to be it", but she came through.
Mum had chemotherapy and radiotherapy, but the side effects of those were intolerable. It’s not only losing your hair, it’s your legs swelling up and not being able to get to the toilet and you’re incontinent, dry mouth, staying in hospital and getting pneumonia and ending up in intensive care, things like that aren’t promoted. At every turn there was some ancillary issue that was because of chemotherapy and radiotherapy and having a weakened immune system.
There were times when Mum was given almost the all-clear and she came good and she could resume her life, but her fitness had dropped away and towards the end she couldn’t see out of one eye. She couldn’t drive anymore.
She’d lost her independence and that was her worst nightmare, becoming physically dependent.
There were good times but gradually over that four years her capacity and ability declined.
In October 2017 she reached the point where she’d had enough. She stopped having active treatment because it was horrendous for her. We nursed her at home with Silver Chain in a hospital bed. It was not the dignified end she wanted. She was just waiting to die. Mum had a plan to end her life, but I didn’t know what the plan was. She died the day before it was due to be put into effect. She was 73 years old.
I don’t think it is fair that you have to go behind closed doors or make decisions about obtaining medications that can help you end your life that are illegal therefore you have to do it on your own without family support because if your family is involved they may be charged and go to jail. I don’t think that is fair that people have to die on their own. Likewise a lot of people can’t afford to go overseas to do it. I’m supportive of people having choice and doing it in a dignified way.
I hope the bill for voluntary assisted dying gets up in WA. I hope it is the start of people being able to have a choice.
I hear anecdotally that when people have a choice it’s an easier time for them. That doesn’t mean they are necessarily going to utilise those choices, but it’s a measure that gives people peace, to know that it’s there if they want it. I think that’s kind, dignified and respectful. Not forcing it on people, but just that people have the choice, can get organised, think about it, look at their options, sign all the appropriate documentation and that it’s there. I think that’s a fair and empathetic system.
Like my mother, I don’t believe we should prolong living if living has come to a point where there’s no quality. I believe in quality not quantity.
Louise Carbone, April 2019