I can't wait to stop talking and start walking – all the way from Victoria's Parliament House to the front steps of our own Parliament House in Western Australia.
For three long years I have been retelling the trauma of my mother's protracted, agonising death while in a specialist palliative care facility here in Perth, and wanting things to improve for others. But all the heartache and hard facts are not enough.
My beautiful mum Mareia experienced a horrific death which modern medicine and caring specialists could not save her from – and I don't want her suffering to be in vain.
I want WA to introduce voluntary assisted dying laws so that no Western Australian with a terminal illness has to die the way my mum did, enduring unspeakable pain and suffering that cannot be palliated in their final weeks, days and hours.
I'm not alone. An overwhelming majority of people in our community are with me. I want to send a message of hope to other Western Australians who have had their hearts broken, and a message of urgency to the politicians who are representing us when I leave Melbourne on 28 May, as I plan to trek west on foot, arriving in Perth on 6 August.
My mum was just 63-years-old when diagnosed with metastatic breast cancer which was so advanced that chemotherapy only hastened her demise; she died 11 weeks later.
As a devout Catholic and nurse for 39 years – much of her nursing career spent in aged care – my mum could hardly be better informed about the moral and medical considerations at the end of one's own life.
To give some perspective, when she was a young woman living in London she visited Madame Tussaud's waxworks. While I would gravitate to George Clooney, Brad Pitt, Royal Family members and the like, the only waxwork she took a photo of herself with was the late Pope, John Paul II.
So, in her life religious leaders were the "celebrities". Her faith was everything to her.
But when the writing was on the wall, and she understood the suffering that was coming for her, she asked for help to pass quicker from life on Earth.
It took great courage for my mum to ask for something that didn't sit with the teachings of the Catholic church – a change in her born of humility and her first-hand experience of unrelenting suffering.
When I witnessed her asking her medical team for a medically assisted death, it was the proudest day of my life as her daughter.
Yet I was helpless to her wishes. My mum fell into that terrible, small cohort of people who can't have their pain and suffering relieved at the end of their life – instead dying in a manner that no Hollywood horror film could ever come close to re-creating. It was a 4-hour long movie scene that will haunt me for the rest of my life. But it wasn't a movie.
We can do better here in WA.
Walking from Melbourne to Perth symbolises for me the way our journey to life's end should be – long and arduous, sometimes painful, yes … but supported all the way by empathetic, loving people who reflect on what it might be like to walk in the shoes of others.
For Western Australians who face not only death, but great pain and suffering, I want them to have assisted dying laws so that it's OK for them to ask for help if they want it, and it's OK for them to receive it from those who are willing to give it to them.
– Belinda Teh, May 2019
My father George always said he wanted to go home and die in his own country. He and my mother Margie were both born in South Africa but lived briefly in Australia in the 1990s. They returned to South Africa in 1991 and my dad died there in 1993, aged 82.
Dad was educated at Cambridge in England and worked as a scientist in agricultural research until he was 75. Although he had always suffered from asthma he was very active during his life, loving cricket when he was younger and playing tennis well into his 70s. He was devastated when his knees gave in, forcing him to walk on crutches for the last years of his life.
Back in South Africa, he and my mom moved to a retirement village in Hermanus, a beautiful seaside town. Dad loved it there, but the cold wet winters wrought havoc with his asthma, which was slowly killing him.
I think one day he just decided he’d had enough. He went to the management centre of the village where he said thank you to the staff, and that he didn’t think he’d be around much longer.
Dad had a nebuliser that was plugged into the wall of his room to help him breathe through an asthma attack. That night Mom heard him gasping and wheezing in the middle of the night, and calling out for her. She went to his room to help him and found that his nebuliser had been unplugged. She tried to plug it back in but he died before she could do so.
My dad was always claustrophobic and he must have been desperate to choose that terrible way to die – essentially by asphyxiation. He knew that by unplugging the nebuliser he was cutting off the one thing keeping him alive. When he found himself unable to breathe he must have panicked and called out, but it was too late.
No one knows for how long he had planned his death, and how lonely a time that must have been. He left a note saying goodbye to my mom, my brother and sister and me, and his three grandsons. He knew he was dying, slowly and painfully, and he just decided that it was time to go.
My father had a terminal illness and was of sound mind when he killed himself. Had assisted dying been legal in South Africa he could have died peacefully and painlessly at a time of his choosing, with his family with him, instead of suffocating in the dead of night, afraid and alone.
I’ve always believed that it should be our choice how and when we die. I recently became actively involved in promoting this cause when the laws in Australia started changing. I joined Dying with Dignity and became a committee member. I went to a hearing before the joint select committee into end of life choices with a friend whose husband died in the most terrible circumstances, and since then have heard and read countless other similar horror stories. The time for a change in the law has come.
- Dinny Laurence, December 2018
As a female semi-rural GP involved in palliative care for the past 25 years, I have helped many patients and their family attain a ‘positive’ death experience through psychological, spiritual and medical support.
The option of assisted dying was always a very important and reassuring part of this care to both the terminally ill and their loved ones. This option was not always called upon, but when used it was a beautiful relief to an agonising crawl into death. The dying person and their loved ones were always most grateful for this service and went through great lengths to protect me from any legal ramifications. Unfortunately this included scheming and lying and not discussing issues with third parties. This was by far the most traumatic part of the situation for everyone concerned.
Legalising this most humane part of medical care (which I believe is commonly practised by many of my compassionate colleagues) would avoid the isolation, scheming and ‘backyard’ aspect to this service. I liken it to abortion, which is carried out in all countries whether it is legal or not, but legalising it has allowed safe and supportive care.
Some five years ago, a 55-year-old woman came to see me in my clinic. She was distraught and desperate for help. She explained that her mother, who was in her 80s, had severe emphysema, was breathless at rest and any activity caused her to gasp for air. The respiratory physician had suggested home oxygen and inhalers, none of which relieved her severe breathlessness.
She went on to explain, through tears of distress, that on three occasions she had found her mother in bed with a plastic 129 Nurses and doctors bag over her head. The bag had not been tied effectively and her mother’s suicide attempts failed each time. Did I have any suggestions to help, she asked?
What to do? My bags of tricks in my palliative care repertoire are mostly useless for severe breathlessness. I could try low dose morphine, but this would create hypoxia and confusion which would be very distressing in itself.
Could I, as a compassionate human being with skills and ability to relieve another human being’s severe distress, deny this because some bad rules were in place in our society that could land me in trouble? My answer was: NO. Sometimes one needs to stand up for what is right, despite the potential personal sacrifice.
I went to visit the mother, who lived with her daughter on a rural property, and confirmed her medical condition to be terminal and associated with severe distress. The mother confirmed a passionate wish to die and end her suffering, and a mental state examination confirmed she was of sound mind.
Over the coming weeks I did try the morphine to allow at least an attempt at symptomatic treatment and to give me, the patient, and her family, time to consider her options. The treatment did not relieve her symptoms and the mother was persistent in her wish to die.
After confirming the family’s support of the mother’s decision and their support for my position from a legal point of view, it was decided for me to arrive at 6.00 one morning to provide a lethal injection with the family by her side. The mother died a beautiful peaceful death with a smile on her face.
I went back home to have breakfast and went to my clinic to start the day. To cover myself, I had asked the daughter to call my clinic at about 9.00 to inform the reception that she 130 The Damage Done had found her mother deceased in bed that morning and could I come over please. At lunchtime I went back to the house to debrief the family, certify the death and help arrange the funeral arrangements. The family was very grateful for my help.
As for me? How did I cope?
Over the years it has been a very lonely road. I was unable to discuss this emotionally charged part of my work with any colleagues or other health professionals. My husband was a great support, but this is not the same. It was also very difficult to determine and access the right mix of medications to allow for an effective gradual peaceful passing. I know I have done the right thing for my patients and this knowledge is the best reward.
- Dr Alida Lancee, MBBS, FRACGP, August 2016
Watch Channel 9's 60 Minutes episode aired 23 September 2018
When my daughter Scarlett was 11-months-old, she woke up one morning and her body had turned to jelly. She couldn’t crawl. Her head flopped sideways. And she screamed and screamed and screamed, with a haunting pitch that will stay with me forever. It sounded like she was imploring me to help her.
Her diagnosis was a double whammy. Neuroblastoma, cancer of the central nervous system. An ugly, ugly cancer, fast spreading, difficult to treat. Also, a secondary condition – a rare and dire immune response to the cancer known as Opsoclonus Myoclonus Ataxia Syndrome. One in 10 million children draw the short straw, and Scarlett was one of them.
The outlook was devastating. Even if she did survive the cancer, her brain was being attacked by antibodies that were confusing brain tissue with the tumour – and they couldn’t tell us how to stop it. As her little body convulsed with spasms and her eyes spun around in circles, we were told she may never walk, or talk, or live. They just didn’t know, and I was told unequivocally to expect the worst.
But this story isn’t about Scarlett. It’s about my dad, Gerald Charles Briggs. He was the first person whose arms I fell into when I heard my bright, sparkly, funny, smart baby girl might never be the same. Or worse, leave us forever. I remember him saying to me, “We’re all in this together, we’re all going to share this load and get her well again.” That was my dad. He was our family oak, our leader, our backbone. I’m not sure I could have got up off the floor without him.
With him leading the way, gently propping me up, that’s exactly what happened. Scarlett defied all the odds for a wonderful outcome. Her tumour was Stage 2B, 4cm glued to her breastbone, contained but just a millimetre before spreading to the spine. It was resected with surgery. She had a rare, successful response to treatment for OMA and within eight months, was in full remission. She passed all paediatric tests with flying colours. Her oncologist was amazed, her neurologist utterly perplexed.
This should have been a happy ending for my family, but it wasn’t. Three months after Scarlett gained remission, my dad started coughing up blood. Shortly thereafter we were told he had three months to live. Cancer of the pleural lining of the lungs, thanks to years where he was required to spray asbestos as a young apprentice in the building industry.
My dad was an absolute powerhouse in life. I’ve never known anyone more ballsy. He could work 16-hour days of manual labour without breaking a sweat. He wrestled snakes and carried fridges on his back. He sawed his finger off once and didn’t flinch. He slashed his leg open and got out the needle and thread and sewed it right up. He mocked Panadol, never took one in 62 years.
He fought cancer like a warrior. He turned a three-month prognosis into five years. Even with advanced lung cancer, he’d still scale my roof and clean my gutters. For such a hardworking, proud man, being sick and not being able to work like a Trojan as he was accustomed was torturous.
When the end came, my dad’s death was far more terrible than anything I ever could have imagined. Palliative drugs were not coming close to controlling his pain. For four days we sat in an airless room with him, as he screamed and bellowed and writhed and cried. The previous night he was so panicked from the rising pain level he had tried to get up and run from it. He crashed down, smashing his head and cutting it open. When the nurses found him on the ground, he was covered in blood and sobbing and begging to be “put down”.
I’ll never forget sitting next to my darling dad as he lay there in a nappy, two twig like bones for legs poking out, covered in purple bruises, drinking from a child’s sippy cup with a black eye and stitches across his forehead. He looked heartbroken. His urine bag was filled with what resembled dark brown syrup. His left eye was hanging down. And he was in absolute agony. All we could do was hold his hand and play his favourite music and pray for it to end. He endured an agonising 96 hours of torture before he finally passed. There was nothing remotely peaceful about it and his body never stopped writhing or shouting out.
I can’t speak for my dad. I don’t know if he truly would have opted to end his life earlier if he had the choice. But I can speak for myself - and my mother and sister, who sat in that room with me, echo these views. I never want to endure that extreme suffering, and I never, ever, ever want my children, family or loved ones to play witness to it. My dad was destroyed. I still have nightmares, I still walk around with a giant crack in my heart, I still fear meeting the same level of suffering one day, and I suspect I always will. It’s a trauma I will never recover from.
Dad’s death was so violent his own grandchildren couldn’t come and say goodbye to him. I believe it’s my right to opt for a controlled and compassionate end to my life, determined only by me. I’m so sorry my dad was not afforded the same rights. He was a good man and a quality human who contributed kindness to the world and deserved so much better.
- Sian Briggs, September 2018
My husband of 46 years, father of Drew and Kirsty, father-in-law of Kylie and Mark, grandfather to Robbie, Cameron, Liam and Daisy was diagnosed with lung cancer in August 2014. He was not a smoker.
Andy, following medical advice had one third of his right lung removed, and endured chemotherapy and chemo-radiation therapy. In June 2015 he had check-up scans to be told his cancer, while no longer obvious in his lung, had spread to his duodenum, adrenal glands, lymph nodes in his back, and his liver. He had also developed a clotting disorder following chemotherapy and had bilateral pulmonary embolisms, and clots in his arms and legs. We were both devastated, and Andy was exhausted and in pain.
After long discussion and serious consideration Andy declined further treatment. He came to terms with his prognosis and imminent death, probably more quickly than we, his family, did. We discussed travelling to a jurisdiction where he could assist the process of dying, but he was too weak and ill to contemplate the journey.
Andy decided to stop eating and shortly afterwards severely reduced his fluid intake, this was the only path open to him to bring his life to a close. We fully supported him, as did the Silver Chain organisation who helped us keep him as comfortable as possible while his body finally gave up.
He was mentally incredibly strong and positive, and among other things, we spoke about how we as a society show more compassion to our animals than we do to our human loved ones (we had both sat with our old dog a few years previously while the vet gave him an injection to end his life so peacefully).
It took three weeks for Andy to pass away. He wished there was a way he could have been given help to finish his life much earlier, and had researched taking his own life to that end.
It was the most difficult time of my life to watch my beautiful and loved husband slowly and painfully succumb. I felt helpless and that feeling is still with me today when I think of the final days of his life. It should not have been so hard for him to go.
Andy’s legacy is our children and grandchildren, he was a loving and very loved Dad and Grandad. We cherish the memories we have of him, so full of life, humour and love.
With love and good memories,
- Sandra Rose, August 2016