The family of a woman with multiple sclerosis, who died at home in the care of her husband weighing 30 kilograms, says the former nurse was let down by a flawed health system.
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The woman Marceline*, who was diagnosed with MS at 40 and progressively became unable to care for herself, had been admitted to hospital on many occasions after obvious neglect.
It became clear to the family that her husband, who had chronic fatigue, depression and anxiety, was not mentally and physically capable of giving his wife the care she needed.
In 2005 he wrote murder-suicide notes which he later rescinded.
Two years later 48-year-old Marceline was dead.
Her story was shared on Day 3 in Hobart at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
The woman who had cared for others in her career as an aged care nurse, "whose smile just lit up a room", who was "passionate about her life and everything that she took on", was let down by the system in which she had devoted much of her time.
It took five years for a coronial inquest to look into Marceline's death, which saw her husband charged with manslaughter.
Her sister-in-law Margaret Burn, who is also a nurse, told the Royal Commission on Wednesday that Marceline lived with courage but died without dignity.
Ms Burn said the red flags were ignored.
"She was just a person with a disability, and she was terminally ill, and that's all they saw.
- Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability witness Margaret Burn
At one stage Marceline was admitted to hospital after police conducted a check on the home.
It became clear that her physical health had deteriorated and she was cognitively impaired.
"They had found Marceline in a state of neglect. It looked like a house where people were not coping," Ms Burn said.
Despite spending seven months in hospital because, at that stage, the husband was unable to care for her, Marceline eventually went back into his care.
He refused to let anyone into their home and when a friend managed to enter the house they were "horrified".
Marceline was again admitted to hospital seven months before she died, in a state of starvation, but the hospital sent her home with "end stage MS".
This was despite a psychiatrist "strongly" believing she should not go home with her husband.
She required a feeding tube and other care requirements, but no doctors visited her at home, "and there was noone to sign her death certificate".
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Ms Burn said Marceline was unable to advocate for herself, due to her illness, but if she had "she could have advocated for herself very well".
She said when neglect or abuse is raised as an issue, a public advocate should be appointed at the point of hospital discharge to ensure welfare checks are conducted, and appropriate home care services are given.
"If you are terminally ill, everyone is entitled to die with dignity. And to have pain relief, wound care, 24-hour care," Ms Burn said.
"There must be a better system...but I think she was just a person with a disability, and she was terminally ill, and that's all they saw."
The Royal Commission continues on Thursday.
*Not her real name
