My mother, Jan Scott Ryder, was a beautiful woman who adored her family and loved her life. In May 2012, aged 77, Mum was diagnosed with terminal brain cancer. Initially she spent three weeks in hospital and, with each visit from her doctors, the news got progressively worse.
Mum had an aggressive form of glioblastoma multiforme, and with multiple tumours they could not operate or do radiation therapy for fear of causing severe brain damage. Before leaving hospital Mum asked her neurologist, if he would ‘look after her in the end’ and give her something ‘before it gets ugly’. Of course, he could not make that promise and, in fact, she never saw him again as she was then referred to a community palliative care team.
Mum did not want to enter a hospice and we were happy, and able, to care for her at home, but Mum always had the expectation that her doctors would not let her suffer in the end and that she would have a peaceful death. This is not what happened. Like many people with a terminal illness, Mum’s quality of life deteriorated quickly; however, in the beginning she still managed to get some pleasure in life, even though she rarely left home.
As the months passed Mum lost her ability to walk, she lost words and struggled to communicate, she was unable to write, unable to read, unable to talk on the phone and, towards the end, even listening to the radio or watching TV caused great discomfort. She was sleeping more and more each day and she had headaches and constant nausea.
But even when Mum was bedridden and it took two people to carry her to the toilet, and she couldn’t even wipe herself, she still wanted to live. Each day her condition worsened. We did everything we could to try to keep her comfortable. Every day I would rub her legs and feet because she said it felt like they were already dead.
The anti-nausea medication did little to ease her discomfort and as Mum’s right side became more and more affected she could not even lie in bed peacefully. She was agitated and distressed. Mum started to ask for some form of medication that would just knock her out but nothing the doctors prescribed achieved a peaceful state.
She had had enough. She kept asking, ‘Why are they doing this to me?’ ‘Why are they torturing me?’ “She kept asking, ‘Why are they doing this to me? Why are they torturing me?’ ” By 14 November Mum no longer wanted to eat and each day she asked, ‘When will it end?’ ‘Just give me something to end it’, but I couldn’t. I was so afraid. I knew the end was near but it was so hard to see my beautiful mum suffer like this. I know if Mum had been able to end her own life at that point she would have but by that stage she was like a rag doll.
I felt like I had failed my mum because I had promised her I would be with her to the end and that I would not let her suffer. But that was not possible.
The next day Mum was taken to a private hospital. I am not sure if she even knew what was happening, she couldn’t speak, she just stared. Fortunately the hospital staff allowed us to stay with Mum and we were so grateful for that but we still couldn’t stop a traumatic end.
Right at the beginning of Mum’s illness she had suffered two seizures. The first had led to her diagnosis and the second happened just days after she was originally discharged from hospital. Mum’s greatest fear throughout her illness was that she would suffer another seizure. She had described it as like having a giant slamming back and forth inside your body but fortunately changes to her medication prevented this. That is, until the end.
By the time she was admitted to hospital Mum could no longer swallow, so she was unable to take the anti-seizure medication. On that first night my worst nightmare came true and Mum suffered another seizure. It took nearly an hour and a half to get the seizure under control because the nurses were only authorised to give small doses of medication, 15 minutes apart.
Why weren’t we given the chance to make Mum’s passing a peaceful end? I won’t describe all the other things that Mum had to endure over the next four days but I want to point out that under the current law, medical practitioners can only treat symptoms as they occur. That means a terminally ill patient, like Mum, has to suffer, whether it be nausea, pain, or other symptoms.
Nothing is given in doses high enough to prevent suffering, all for the fear of giving too much and perhaps hastening the death. How can we say we live in a humane society? Nothing could have prevented my mother’s death but doctors could have given her a peaceful end, if only it was legal. Through all that Mum had been through it was only in the last few weeks that she pleaded for someone to end her suffering.
We all let her down and that is a burden I will carry for the rest of my life.
Shayne Higson, first published in The Damage Done, August 2016