Ros Williams was a fierce advocate for coronial reform in the ACT.
She saw firsthand the need for reforms following the death of her son, Ben, who died in a road accident in Canberra in 2010. The coroner ruled his death a suicide.
Ms Williams' determination and advocacy resulted in the establishment of a dedicated coroner for the territory and family liaison officer to help those going through the coronial process.
"We really need a better coronial process for the whole of the ACT community because it's about preventing deaths," she told The Canberra Times in 2022.
But now, in a tragic twist of events, Ms Williams' own death is being investigated by the coroner and her family believes it shouldn't have to be like this.
Her family have said Ms Williams, who was in the later stages of motor neuron disease, was forced to take her own life earlier this year after an agreed end-of-life plan was stopped.
The family is now advocating on behalf of their late-wife and mother around end-of-life options in the ACT.
'Advocating for herself'
Ms Williams' husband, Jim, said his wife would want her family to advocate for better outcomes.
"She wouldn't be so much fighting for herself. What she fought for in the mental health space and in the coronial reform, she would be fighting so that others didn't suffer in the way they did," he said.
Ms Williams took her own life in April. She was in the later stages of motor neuron disease. Her mobility was becoming incredibly limited. She could no longer walk, could only type with one finger and needed assistance for all bodily needs. She had started to have difficultly breathing, swallowing and talking.
She did not want to live like this and had made her wishes known in an end-of-life plan.
Ms Williams would have chosen voluntary assisted dying if it was available in the ACT. Instead, she explored the end-of-life options available to her through Clare Holland House, the only palliative care option in the nation's capital. The hospice, which was operated by Calvary at the time, also manages home-based care in the territory.
Canberra Health Services took over the management of the hospice on July 3.
There was a plan agreed to with a palliative nurse and two doctors. Ms Williams had intended to stop eating, at a time of her choosing, and she would have undergone palliative sedation. Under the plan, she would have lost consciousness in about two days and would die about two or three days after that.
But this plan was stopped by a senior doctor at Clare Holland House when she went to enact this plan, her family has said.
This doctor said the palliative sedation could not be administered at home and, instead, it would have to occur at Clare Holland House. Ms Williams would not be medicated to a point where her death would be hastened and the doctor could not guarantee if she would lose consciousness.
This plan was likely to take two to three weeks.
Ms Williams believed this plan was "cruel" and her family said she told the doctor this plan would force her to end her life.
One night after this interaction police showed up at Ms Williams' door for a welfare check. Mr Williams refused to let the officers in, saying it would only precipitate the event they were there to prevent.
Mr Williams was puzzled as to how the police found out but he said the following day the senior doctor had admitted to him that he had contacted the coroner's office to seek legal advice about what Ms Williams had said to him.
A few days later, on April 27, Ms Williams told her daughter, Corinne Vale, and son, Antony to take Mr Williams for a walk. When they returned their wife and mother had taken her own life.
Police showed up to the house following Ms Williams' death. About 10 police showed up and they remained at the house for hours. Several items were seized including a laptop, printer, Ms Williams' phone and a note she left behind following her death.
The whole time this was happening, Ms Williams body remained in the living room and her family were not allowed to touch her or say their goodbyes until the coroner's undertakers had arrived.
Mr Williams said his wife was very much of sound mind when she died. In the week before her death, Ms Williams was assessed by a psychologist who supported this.
"Ros clearly has decision-making capacity; after careful consideration, reflection and extensive discussions over the last 12 months with those closest to her, she has no doubt about how she sees her future," the evaluation said.
"She intends to ensure that her death can occur in the way that she has lived her life, with dignity, compassion and thought for others.
"Now, as her death nears, Ros is advocating for herself, just as she has done for countless others across the course of her life."
A Calvary spokeswoman said the organisation could not comment on the matter as it was being investigated.
"Calvary extends its sympathies to the family on the passing of their loved one," the spokeswoman said.
"Due to a current coronial investigation, Calvary is unable to comment."
'The least worst option'
If Ros had lived in Victoria, Western Australia, Tasmania, Queensland or South Australia she would have been able to access voluntary assisted dying. NSW has also passed laws but these won't become operational until next year.
"The best possible option for her would have been voluntary assisted dying and that wasn't available," Ms Vale said.
"She had assessed all the options that were available to her and decided that taking her life was the least worst option, that was the word she used to describe it. There's no good options but that was the least worst option.
"And I think that speaks volumes about what the other options were that were available to her."
The ACT was banned from making laws on voluntary assisted dying until last year when the federal parliament overturned a 25-year-old law which prevented the territories from legislating on the matter.
The territory is in the process of developing a bill which is expected to be introduced in the coming months. The laws are set to pass the Legislative Assembly either late this year or early next year.
But it will still take about another 12 to 18 months before a scheme becomes operational in the ACT. The government's legislation will have an implementation period as the states did.
However, Mr Williams and Ms Vale want an interim solution to be found, such as allowing ACT patients to be able to access schemes in other states.
All other states require people to be residents for a certain amount of time before being allowed to access the scheme, this is normally about one year.
Human Rights Minister Tara Cheyne said Canberrans could potentially access the NSW scheme when it comes into operation later this year.
The NSW laws say that people can access voluntary assisted dying if they have a substantial connection to the state, including if they are a long-term resident if a place close to the NSW border and receive medical treatment in the state.
Ms Cheyne said the ACT was working with NSW to explore whether there was a possibility for flexibility.
"Our understanding is that state VAD laws require the entire VAD process to be undertaken within the borders of that state," she said.
"In other words, if a Canberran living in the ACT were to be considered exempt from NSW residency requirements, they would have to undertake the entire VAD request, assessment, and substance administration process in NSW. Returning home to Canberra to die here at the end of that process or doing part of the process here and part in NSW, might breach NSW law.
"As a significant number of patients in Canberra hospitals are NSW residents, and many Canberrans move between the ACT and NSW for healthcare and family reasons, the ACT government is eager to work towards a VAD model that is not unreasonably limited by territory borders."
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