'Don't leave it too late to apply for VAD'
Terry Hargreaves had expressed his wish for Voluntary Assisted Dying when the time came. But it didn’t happen. His daughter Emma tells his story with the advice: don’t leave it too late.
There were many ways it could have been different for Terry Hargreaves, who had metastatic prostate cancer. He could have died at his Melbourne home using Voluntary Assisted Dying, surrounded by family at a time of his choosing.
Instead, the last few weeks of his life were marred by anguish, pain and distress.
There were a number of factors or “hurdles” that prevented Terry accessing VAD, explains Emma, his daughter.
The first problem was Victoria’s so-called 'gag clause', which prevents doctors from raising VAD with their patients.
Terry was diagnosed with prostate cancer in 2011 and lived with the disease for 13 years. For the last two years, it had spread and become metastatic. During that time, he underwent chemotherapy and radiotherapy and participated in a clinical trial at Peter MacCallum Cancer Centre.
If a doctor had been able to raise VAD in the context of other end-of-life treatment, it may have been a prompt to start the approval process early, says Emma.
“I knew we should have applied early - but we let it go, against my better judgement,’’ she said.
While Terry was feeling relatively well, there did not seem to be any urgency.
Terry, who was born in the UK and emigrated to Australia in 1968 to play soccer professionally in Melbourne, played for the Croatia team. He coached for Seaford United soccer club in Melbourne, raising three children in Carrum with his wife Margaret.
He was a deeply loved and cherished grandfather who built a dune buggy track and zip line for his grandchildren. He also shared his love of soccer with them, often taking them into the city to watch Melbourne Victory play.
Although his health fluctuated, towards the end of 2024 he had regained his appetite and was building a deck with his son. But then he had a sudden decline and was hospitalised, needing blood transfusions.
Emma managed to get Terry home, as he intensely disliked being in hospital. Now was the time he wanted VAD. If Terry had already had VAD approval, he could have gone home and accessed it at the time of his choosing.
Instead, Emma spent a stressful few weeks trying to get the VAD approval process underway. Here is where other factors worked against her. It was mid-December, approaching the holiday period which compounded an existing shortage of VAD doctors.
“Sadly, with Christmas and New Year approaching, the timing was against us,'' Emma says.
"Over the next few weeks, I had three phone calls with the VAD team, pleading for help, as my dad was talking about taking matters into his own hands. He hadn't eaten in weeks, and was suffering immensely. Each time, I was told we had likely left it too late due to the holiday period."
Terry needed the approval of two doctors and, under Victoria’s law, the second one had to be a specialist in the disease or illness that led to the VAD request. On December 27, Emma called to try again to kickstart the VAD approval process. However, there was no oncologist available, and by this time, Terry was simply too ill to travel to an appointment.
"During that call, I was told that the required oncologist appointment had to be in person," Emma says.
“There was no way he could move. We had a hospital bed in the home, he was so weak and exhausted from not eating, and generally feeling awful. The idea of getting him from a carpark to the waiting rooms was not possible.”
Another hurdle was a Commonwealth ban on using telehealth in VAD care. If telehealth assessments were allowed, Terry could have had his appointments in the comfort of his own home.
“If telehealth had been an option, it would have made an enormous difference. It could have changed the outcome and, most importantly, empowered my dad in his final moments,’’ Emma says.
“He was agitated and distressed and worried it was going to continue for months.”
After three weeks of receiving hospice care at home, Terry was moved into a palliative care unit, and died a day later.
Emma looks back on the experience, sad and frustrated that her father did not get his wishes. In hindsight, her father would have started the process earlier, ideally with the guidance of a doctor.
Terry had not been given a prognosis, so didn’t know how little time he had left.
“Now we know to do it while you’re still relatively well. You can’t wait until you are unwell. Dad’s decline was very fast,’’ she says.
“By the end - there were too many hurdles to jump through.”
This experience has made Emma passionate about improving access to VAD.
Emma wrote a tribute to her father: “My dad had a remarkable way of facing life with humour, and death was no exception. Even in his final days, he made us laugh through the darkest moments. I will always cherish this gift.”
He deserved a better death, and Emma hopes her story may help someone else.
“Having those difficult conversations in advance is really important.”
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