'Nobody should have to go through this'

Robbi Flynn, 33, was terminally ill and chose voluntary assisted dying (VAD). That’s when her legal, end-of-life choice came up against a wall of institutional obstruction. 

Robbi had cancer and was receiving treatment at a faith-based hospital. 

The oncology team gave Robbi excellent care and knew her well. Robbi hadn’t chosen the hospital because of its religious foundations. She’d gone there because it was her local hospital, and the closest one with oncology services. She trusted them and had formed close relationships with the staff. 

Robbi was clear from early in her diagnosis that if there was no chance of recovery, she would choose VAD. 

She didn’t expect the hospital would make access to VAD so difficult. She couldn’t have anticipated how traumatic it would be to transfer in and out of hospital for her assessments. She also hadn’t expected to be facing her own mortality at 33. 

In fact, neither Robbi, nor her dedicated support team which included her mother Gina Sanderson, could imagine what heartbreak and hurdles lay ahead - all in the name of the religious ideology of her faith-based hospital.

A terrible diagnosis 

Robbi was, in her mother’s words, a “strong, passionate and complex” woman. “She was a big personality,’’ Gina says.

A dog trainer who specialised in training service dogs, Robbi was a fierce advocate for people with disabilities. Robbi herself had ADHD and autism.  

“She cared deeply about people and was fiercely loyal to her friends and clients.”  

A visit to the doctor in 2020 to investigate stomach and back pain eventually led to the discovery of a 16-kilo cystic lesion. After initially being told it was not cancerous, it was later confirmed as terminal adenocarcinoma.

Robbi underwent chemotherapy in the hope that may extend her life. 

But she was also aware that VAD legislation had been passed, and went on to research it thoroughly. She decided it was the path she would take if she ran out of treatment options. 

“She was wary of the medical system and wanted to have agency. We’ve always talked openly about death and dying,’’ Gina says.

Robbi went on a ‘bucket list’ trip around Australia which was cut short when she developed a bowel obstruction. That meant she was no longer able to eat, and had to rely on Total Parenteral Nutrition (TPN), a form of liquid nourishment administered directly into the vein.

Gina and Robbi’s steadfast friend Colin organised to fly her back to the hospital, where she was in a familiar environment. “That’s where she elected to be, with her trusted oncology team,’’ Gina says.

Robbi had no idea about the hospital’s stance on VAD. It was a faith-based hospital, but as it was also publicly funded, she assumed she would be able to access this legal end-of-life choice.

She was about to find out otherwise.  

Obstruction

When Robbi first enquired about VAD, the hospital told her she would have to move to a different hospital and that she was not even allowed to make a phone call to the VAD Care Navigator team.

Robbi, terminally ill and in significant pain, needed to be transferred three times to access VAD

The hospital later clarified that she could call the VAD team and have them visit. However they refused to allow any of the VAD assessments to be conducted on site. VAD substance administration on site was also forbidden. 

Robbi, terminally ill and in significant pain, needed to be transferred three times to access VAD, twice to be assessed, and once to have it administered at home. All three transfers proved to be incredibly traumatic, which has since led Gina to campaign tirelessly on her daughter’s behalf for the hospital’s policy to be changed. 

The trauma of transfers

The simple notion of a ‘transfer’ belies the reality of moving a terminally ill patient, especially one with complex needs such as Robbi.

“They didn’t take anything else about her medical wellbeing into consideration,’’ Gina says.

“Not only did they not take her neurodivergence into account  - they didn’t consider she was on a TPN, in pain, on life-assisting machines, and was also a very big person. Even just moving her to the toilet and back was logistically very difficult.”

For the first VAD assessment, Robbi had to be transferred to a VAD GP, about 30 minutes' drive away. 

I was so angry and scared. This felt like extreme and inhumane treatment.

Gina describes how Robbi was moved onto a trolley. She was unsettled, nauseous and in pain. She had the TPN bag attached but was anxious as she had been told by doctors that if it detached and fell on the ground, her blood sugar would drop and she risked falling into a coma, thus ending any possibility of having VAD. 

“She had to be taken up a hill and they couldn’t find a ramp for us to get into the actual doctors office,’’ Gina recounts.

“Then they couldn’t fit the trolley through the office door. We were monitoring the TPN machine the whole time because if she slipped into a coma, she wouldn’t be allowed to have VAD. It was absolutely horrific.” 

As Robbi was a neurodiverse patient, the stress of the transfer was magnified several fold. 

“This was not in the best interests of Robbi as a patient, either medically or emotionally.’’ Gina says. 

“I was so angry and scared.

“This felt like extreme and inhumane treatment of my girl.”

Desperate for an alternative solution, Gina tried to find alternative ways to have the second assessment. 

There were brick walls everywhere.

No way forward

Telehealth assessment was not an option, thanks to Commonwealth Carriage laws which ban electronic communications for any part of the VAD process. Robbi needed around-the-clock hospital care so couldn’t discharge herself and go home. 

Her specialist VAD doctor would not be allowed into the hospital to conduct the assessment. 

They put hurdle after hurdle in front of us

Gina started to think about finding a ‘neutral space’. She asked the hospital if the specialist could meet them in the garden, and was told no. She enquired about hiring a room at a nearby health complex, so they could wheel Robbi across the road and up the lift. The health complex refused. 

There was nothing to do but transfer Robbi for her second assessment at a metropolitan hospital. Robbi was shaking in fear. The TPN bag was dropped during the move, at which point Gina burst into tears. 

“For me, as a mother, I was a mess. Robbi had to console me,” Gina remembers. 

“Every day, it was - are we going to get her to the [VAD] date? They put hurdle after hurdle in front of us. We were in fight mode. 

“We didn’t have the time to be with her. In hindsight, it robbed us of so much love and peace and time.”

VAD day 

Worse was to come, when Robbi planned to go home to her father’s house, to access VAD. A conflict emerged about Robbi’s intravenous access port. 

Gina explains that Robbi wanted to keep the existing port as she suffered extreme sensory sensitivity, especially to needles, and doctors had trouble finding her veins. 

The psychological and physical distress of having the VAD doctors attempting to find a vein would have been unbearable. 

Eventually, Gina arranged her own private ambulance transport and Robbi managed to leave with the port intact - a bittersweet victory. There is even a photo of Robbi in the back of the ambulance displaying a victory sign. 

“They had tried to carry their religious beliefs over Robbi's entire care right up until her final departure from their hospital.”

At home, at last

Robbi now had a few precious hours to spend with friends and family, some of whom had flown from around Australia and New Zealand.

She had VAD at home in the afternoon of 27 October 2022.

Her death was peaceful, respectful and on her own terms. Gina says it was “a gift” to her loved ones. 

“It was absolutely beautiful.”

However the stress of the VAD assessment process and the final departure from hospital overshadowed Robbi’s final days. Gina has not been able to forgive, or forget, how the hospital made a traumatic time even worse. 

“Robbi’s situation was handled extremely badly for her and for us as a family,’’ Gina says. 

“Robbi was not religious. She was a public patient. She had been through so much.”

Before she died, Robbi said: “don’t let this happen to anyone else”. 

A demand for change

In the aftermath of Robbi’s death, Gina wrote to the hospital asking for change. She had two requests -  more VAD-awareness training for staff, and for the hospital to provide a ‘neutral’ space where patients could have VAD assessments.

Gina had seen the hospital proudly promote prayer rooms and gathering spaces for other faiths and cultures. So why couldn’t they offer a neutral space for VAD assessments? 

“I don’t agree with them overlaying their religion onto public spaces. It’s a public hospital. It’s not like Robbi decided to go to a private, faith-based hospital,’’ she says.

Three years after Robbi’s death, Gina still remembers her final days as filled with “stress, tension and fight".

“I'm very proud of my daughter, and of our family. And I'm a huge advocate for VAD. 

“But we were 100 per cent robbed of the time we could have spent with Robbi, and the peace she could have had in the past two weeks, which is hugely unfair. The gift of VAD is that they get to spend time with their loved ones, you can set the date and spend that time meaningfully. 

“The more I speak to other people about their peaceful VAD journeys, the more jealous I get. We didn’t get to do all the rituals and spend that precious time together the way we should have.

“Nobody should have to go through this.”