James “Jim” Mills is remembered by his family as a larrikin. 

The regional railway worker loved the St Kilda Football Club, a cold beer, and said yes to any dare that would come his way.

Diagnosed with brain cancer in 2021, when he was living in South Australia’s Riverland region, Mr Mills received care at a local assisted-living facility, which was funded by the National Disability Insurance Scheme (NDIS).

His partner, Sandrine Adams, said it was “home away from home”.

But Mr Mills’s family said his NDIS funding was abruptly cut, and he did not want to live out his days at the local hospital.

Two months later his funding was reinstated, but he could not bear to go through the uncertainty again — he was tired of fighting his condition and the bureaucracy.

On August 18, the 62-year-old chose to end his life by voluntary assisted dying (VAD).

Now, his family and friends want better palliative care support for under 65s, so no-one else falls through the cracks like he did.

Mr Mills and Ms Adams loved spending time together, watching local bands and fishing by the river.(Supplied: Sandrine Adams)

A love decades in the making

Ms Adams met Mr Mills when the pair were in their 20s around 1980, having both grown up in the Riverland.

“He went to school here, he was a Riverland boy. Lots of people in the community were fond of him,” Ms Adams said.

“A little rough around the edges, but a likeable person.”

She was married when they met. 

But after that relationship ended, she and Mr Mills struck up an on-again off-again relationship.

Mr Mills worked on the railways around Australia, and was living in Perth when he called Ms Adams in 2010. 

“We hit it off from there. He quit his job and caught the first plane he could,” Ms Adams said.

She said he was like a father to her three children, and like a grandfather to her 10 grandchildren.

“They adored him,” she said.

Mr Mills with his beloved dog, Numnum.(Supplied: Sandrine Adams)

Assisted living ‘pampered him’

In 2021, Mr Mills started losing vision in one eye.

A few months later, he was diagnosed with brain cancer and given a prognosis of 12 months to live.

He defied that prediction, with Ms Adams caring for him in their Loxton home as long as she could.

Mr Mills’s family said he received NDIS funding for his vision impairment, and around April 2023, used this funding to receive palliative care at a local assisted-living facility.

“They looked after him 24/7, they pampered him,” Ms Adams said.

“He was in pain and he had no quality of life at all, but he was very comfortable and well looked after.”

In June 2023, Mr Mills’ family said his NDIS funding was abruptly cut.

“They said his cancer wasn’t a disability but a health problem,” Ms Adams said.

“I don’t know what happened — he got more funding to the 18th of August. And they said on the 18th, ‘You’re going into hospital’ and he said, ‘No, I’m not. I’m going to take my medicine [to end my life]’.”

Laws allowing voluntary assisted dying in South Australia came into effect in January.(ABC News: Natasha Johnson)

50 days of uncertainty

Ms Adams said Mr Mills did not want to receive palliative care at the Loxton Hospital, as he felt the level of care and comfort was greater at the assisted-living facility.

“He didn’t want to go to hospital because our hospital here [in Loxton] is that understaffed, when he was in there for three weeks they couldn’t provide the full-time care he needed,” Ms Adams said.

“He even got a bed sore. There was only two staff for 17 patients. It’s a very good hospital, but they’re just very understaffed.”

She said the hospital was not a suitable place for Mr Mills to live out his final days.

“Once he got out there was no way he was going back in any hospital,” she said.

Laws allowing VAD passed the South Australian parliament in 2021, with the legislation coming into effect on January 31 this year.

Mr Mills is remembered as a happy-go-lucky man who was always sporting a flannel shirt.(Supplied: Sandrine Adams)

Mr Mills applied for VAD when the laws changed, while he was in Ms Adams’s care at their home.

“He wanted it ready for when he was ready,” she said.

On August 16, after 50 days of uncertainty, Mr Mills’s family said his NDIS funding was reinstated.

He was told he could stay at the assisted living facility for as long as he wanted, but by then it was too late. 

“He was scared it [the funding] would get pulled again. And he’d rather pass away than go into hospital,” Ms Adams said.

“He’d had enough of his condition. But he’d also had enough of fighting the NDIS.”

Saying goodbye

Mr Mills died by VAD in Loxton on August 18, surrounded by family and friends.

“He went peacefully. He was at home,” Ms Adams said.

“He did a speech and thanked everyone and had a few beers during the day and played his favourite Kevin Bloody Wilson [songs] until it was time to give him the medicine.

“That part was horrible.”

Ms Adams said Mr Mills wanted people to know about his experience, to improve palliative care so no one else got caught in a complicated system like he did.

“He just doesn’t want what happened to him to happen to anybody else,” Ms Adams said.

“And more improved care for people under the age of 65. Adelaide has a respite place for cancer patients where they can go to for palliative care. In the Riverland [we need] something like that.

“There is a problem.”

Ms Adams remembers all the times her late partner made her laugh and smile.(ABC Riverland: Sophie Landau)

Continuity of care

SA Liberal Party disability spokesperson Heidi Girolamo has been advocating for Mr Mills and his family in an effort improve palliative care for people under 65 years of age.

“Jim was only 62. There are other situations where there are children or young people just not having access to sufficient palliative care, and having to navigate a new system at a time when they are really struggling, I think is very detrimental,” she said.

“In a small town like Loxton there is a lack of hospice or palliative care facilities outside of the hospital. Even for in-home services for individuals like Jim, at the age of 62 he did not qualify.

“It highlighted the gaps for people who are under the age of 66 not being able to access My Aged Care or other palliative care services, and also the fact that there is a lot less access to palliative care services in the regions.”

Ms Girolamo said she would like to see reforms so that other people in Mr Mills’s situation did not have to spend their final days fighting bureaucracy.

“Jim being so unwell as he was, having to navigate the systems at a time when he should be able to spend the last days with his family … that really let him down in some ways,” she said.

“There needs to be some accountability from the NDIS when someone is deemed as palliative, so that care arrangement is transferred over rather than it just ceasing, and I think that’s where a lot of the problems have been, the federal and the state systems not communicating with each other.

“That continuity of care is so important.”

Ms Adams and her niece, Katrina Raggett, remember the light Mr Mills brought into the family.(ABC Riverland: Sophie Landau)

‘Complex’ issue in the regions

Flinders University Professor Jennifer Tieman, director of the Research Centre in Palliative Care, Death and Dying, said access to palliative care in regional and remote areas came down to resources.

“It can be complex [due to] the health workforce in the area and the availability to provide support in the preferred setting of care,” she said.

“It’s really important that there’s very good communication, but also realistic understanding of what is capable of being supported.”

Professor Tieman said there was a need for increasing palliative care case capacity within the whole of the health, aged-care and, potentially, disability sectors.

“We do have an ageing population, and that means over the next couple of decades there will be more and more people dying,” she said.

“There is quite a lot of investment that is going into training and resourcing.”

A statue at Ms Adams’ Loxton home, resembling her late partner. (ABC Riverland: Sophie Landau)

In a statement, a National Disability Insurance Agency spokesperson said the agency extended its deepest condolences to Mr Mills’s family, and acknowledged how difficult this time must be.

They said the NDIS was designed to complement, not replace, mainstream services that the states and territories provided, such as the health system, which was responsible for palliative care.

“This is to ensure the best services are provided to meet the disability and health needs related to the person’s circumstances,” they said.

Riverland Mallee Coorong Local Health Network (RMCLHN) chief executive Wayne Champion said Mr Mills had ongoing access to palliative care services, including specialised services provided by a nurse practitioner.

In a statement, Mr Champion said Mr Mills had NDIS-funded accommodation through a private provider, not associated with the RMCLHN.

“We are aware senior staff from the NDIA had reassured Mr Mills and [his partner] that he had NDIS funding available to stay with his preferred accommodation provider as long as he might wish to,” he said.

“Mr Mills shared with myself and other SA Health officials that he had a poor experience of Loxton Hospital in the past.

“In this meeting, Mr Mills was offered a place in any Riverland hospital of his choice if he wanted one and was also advised that we could arrange placement in any residential aged-care facility in the region if he wished.

“Mr Mills’s clear preference was to remain in his preferred NDIS-funded accommodation.”

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