The inspiration behind a pioneering VAD hospice program

Bianca Hurle has a pioneering mission to make Rosehaven, a hospice in Victoria, a model for gentle and supportive voluntary assisted dying.

The hospice, in Mansfield, has a reclining chair and trolley bed so people can have their last moments in the well-tended garden if they wish.

Bianca, the hospice manager, wants nothing less than to provide an Australian best practice model for VAD. 

“If it’s legal, safe and possible, Rosehaven will do it."

Rosehaven will organise ‘living funeral’ celebrations, 'last suppers’ and rituals for after-death to help family cope with bereavement. There is a willingness to think outside the square to provide quality end-of-life care. 

“We've got a fire pit and heaters outside and 4.5 acres of beautiful gardens with birds and flowers. It’s a very home-like environment,” says Bianca. 

“If it’s legal and safe and possible, Rosehaven will do it."

Bianca has had a lifelong interest in palliative care, but her desire to help people who choose voluntary assisted dying was inspired by one woman, Jane Wilson.

A peaceful death

Jane Wilson, from Mansfield, at the foothills of the Victorian Alps, was 62 when she was diagnosed with Progressive supranuclear palsy (PSP), an uncommon neurological disorder.

Her husband Bob explained that the disease slowly took away everything his wife, a former kindergarten assistant, enjoyed. Jane lost the ability to drive, write, cook and knit.

She suffered a series of terrible falls as her balance was affected, and speech became limited.

“She said, ‘the words are lined up but won’t come out’,’’ Bob says. 

“It was cruel to watch.”

Aspiration pneumonia is the most common cause of death in people with PSP. Jane expressed a clear wish to access VAD so she could die on her own terms. She did not want to go into residential aged care.  

“It was about choice and control,’’ Bob says.

“She did not waver, not one iota.”

The hardest part was setting the date, 6 March, 2022, just before Jane’s 65th birthday.

Jane was administered the VAD substance intravenously because of her difficulties swallowing. She died peacefully at home on her verandah overlooking a field of cows, surrounded by husband and two sons.

Inspiration 

Bianca had got to know Jane and Bob towards the end of Jane’s life. 

When Bob was diagnosed with bowel cancer and needed to travel to Wangaratta for treatment in 2021, Jane would have respite care at Rosehaven. 

“Bob told me how Jane had died at home overlooking the cows with her sons beside her. And I couldn’t believe how peaceful that was,’’ Bianca said.  

“I found myself having the conversation with him that was not, ‘I'm sorry for your loss’, but ‘how courageous and how beautiful a gift that you've been able to support your wife through that’.”

Bianca had worked extensively in aged and palliative care throughout her nursing career and felt strongly that people should have respect and choice at the end of life. For her, hearing about VAD was something of a lightbulb moment. 

“I've been nursing since I was 17 and it was just a completely different conversation. It was like a ray of sunshine opened in my heart,’’ she said. 

“I feel like everything I’ve done has led to this point.”

Bianca met with Victoria’s VAD care navigator service to find out how Rosehaven could help offer a VAD service to the community.

She had heard of stories of VAD applicants who had to be discharged out of their aged care facility or palliative care ward to access VAD, as it wasn’t allowed on the premises, and of people taking the medication in a motel.

“I was horrified. We, as a hospice, support people around end-of-life choice and want quality outcomes for people. I thought: How can we assist the community?” 

There are now 17 trained volunteers at Rosehaven that can help VAD applicants with witnessing paperwork, driving to appointments and being with them in their final moments.

“It’s giving people quality end-of-life care and treating them with dignity and respect, throughout that whole process, from them knowing they’ve got a terminal illness right through to after-death care.”

As yet, Rosehaven has only provided witnessing of VAD documents and has not had anyone access VAD on the premises.

This is not surprising, as Mansfield is a small rural town, and VAD deaths remain a small number of overall deaths –  between 0.5 percent and 4 percent in countries where it is legal. 

But Bianca is ensuring that Rosehaven is well equipped for VAD as part of the hospice’s end-of-life care service, and potentially offering a model for other hospices. Dying With Dignity Victoria president Jane Morris has described Rosehaven's approach as "groundbreaking".

Bob Wilson returns to Rosehaven now to mow the lawns, an expression of gratitude for the time that Jane spent there in her final months. There is a plaque in the garden with her name. 

He’s grateful that VAD was an option for Jane. 

“Her passing was painless. She just closed her eyes.”

Read about Go Gentle Australia's recommendations to the Victorian Government review of VAD laws here.