‘They literally stole our mother from us’

This article is part seven in a series. For the full series, go here.

Some readers may find aspects of this article distressing.

Karla* blames a guardianship order for preventing her from having a say in the end-of-life care for her 90-year-old mother, Anna*. Karla and her brother, Darren*, weren’t by their mother’s side when she died. 

“She went [into hospital] in September, and came out in a body bag in December,” Karla told Crikey. She says her mother was a social, vivacious woman who loved going out with family and friends. 

Karla believes the hospital didn’t do enough to try to save her mother’s life. The Queensland public guardian had been appointed to make decisions about Anna’s end-of-life care — excluding Karla and Darren after they became disruptive to medical staff. The hospital has said it treated Anna in her best interests. 

“It was all organised last minute,” Karla said. “They just literally stole our mother from us.”

It’s a difficult predicament. Although doctors will try to avoid futile invasive treatments, taking these decisions out of the family’s hands can be especially challenging.

Anna’s story 

Anna was born in Europe and spoke several languages. She was a socialite from a wealthy family who loved watching rom-com movies at the cinema and going out for long lunches with friends and Karla and Darren. 

She was a grandmother and great grandmother. For the last years of her life after her husband died, Anna lived with Darren in a large house on the Queensland coast.

When she developed stomach pains due to a gastro infection in September 2019, Darren took her to the hospital.

“We took her into the hospital as a precautionary measure,” Darren said. “This is why I always blame myself. My mother would still be alive today if we hadn’t.”

Karla said that after Anna and other patients in her ward became infected with the flu as well as sepsis, what they thought would be a short stay turned into four months. Anna was taken off her long-term medications for heart, blood pressure and vascular dementia.

Weeks after being admitted, an interim guardianship order was placed on Anna, who had no power of attorney in place. Crikey understands this is because the family was clashing with doctors and rejecting their medical advice. Karla and Darren were interviewed by medical staff but were not present for the tribunal hearing, which took place at the hospital. This is known as a bedside hearing.  

Karla said no paperwork was provided to them, and requests for documents from the Queensland Civil and Administrative Tribunal was denied because of confidentiality clauses. 

Karla complained to the hospital about her mother’s care and the lack of communication. The hospital, in a letter sighted by Crikey from the hospital’s clinical director, acknowledged the complaint as well as the family’s wishes to resuscitate Anna against the hospital’s advice, although Crikey understands this was later reneged.

Furious about Anna’s declining health, Darren tried to arrange for her to be transferred to a private hospital via ambulance, for which she had insurance for home or palliative care. The hospital and the public guardian wouldn’t allow the transfer because of Anna’s acute condition.

The family became disruptive. Karla says the police were called. The family accused the hospital of kidnapping Anna and the hospital threatening to charge the family with trespassing and abusing staff. Their visitation with Anna was cut from 12 hours a day, seven days a week to one hour a day on weekdays with security present. 

Two days before the family was scheduled to go to court to contest the interim guardianship order in early December, Anna died. Karla says her mother told her in the weeks before her death that she wanted to be with her children when she died but instead she died in the company of a nurse. 

Crikey understands Karla and Darren were told when Anna had just hours to live but weren’t informed when she started declining rapidly and didn’t get to the hospital until after Anna had died. 

“It was honestly horrific … I’m just so angry,” Karla said. 

Anna was not charged fees by the public guardian or trustee because none of the family’s assets were in her name.

“Anyone that doesn’t understand or hasn’t been through this experience would think you’re crazy … but what we went through, so many other people have gone through,” Karla said. 

The hospital told Crikey that public guardians were sometimes appointed when appropriate care could not be agreed upon. 

“We understand this can be an emotional time for family members,” it said, adding that families’ access to patients is limited after they’ve been informed their behaviour jeopardises the safety and well-being of staff, patients or the public. 

“In circumstances where the behaviour continues to pose a risk of harm, we may take further precautionary measures such as reduced visiting hours or, when considered necessary …  visiting privileges may be removed. Our staff have a right to feel safe in their workplace.”

Is ageism a factor in end-of-life care? 

Senior policy adviser at the EveryAGE Counts Campaign Sue McGrath tells Crikey there are issues with ageism in hospitals and positive and negative aspects of guardianships. 

“Sweeping negative assumptions are often made about the decision-making capacity of older people,” she said. “For example, an older person with physical frailty may be completely capable of decision-making about their own life, but viewed and treated as if this has to be taken out of their hands.

“But there are also hopeful attempts to address the effects of ageism through the healthcare system [such as] through health justice partnerships bringing together medicos, legal professionals and social workers and identifying possible instances of elder abuse among patients in hospital.”

McGrath says there is a significant amount of ageism both in broader communities and in healthcare, which can be reflected in attitudes and doctors’ clinical decisions.

“Healthcare practitioners sometimes draw on ageist assumptions rather than carefully listening to and thinking about the individual in front of them,” she said.

“This can include trivialising symptoms or being infantilising in communication with older people.  In hospitals, offensive language such as ‘bed blockers’ will sometimes be used, referring to older people requiring extended hospital stays.”

The aged care royal commission received submissions from people about guardianship orders being implemented in hospitals and aged care settings without family involvement as well as issues of care in hospitals, but they were not looked into as it was out of the commission’s scope. 

What role should families play?

Once in hospitals, elderly people are encouraged to discuss their end-of-life plans which include decisions about refusing treatment and resuscitation orders. 

Australian National University bioethicist Nathan Emmerich tells Crikey more needs to be done to help patients and their families plan for these decisions. Ideally, he says, elderly people should appoint a health attorney to act in their best decisions when they become ill (but as Crikey’s investigation has found, there are no guarantees).

Public guardians can be brought in when there’s no one suitable to make decisions for a person, or when there’s conflict in the family — which given the delicate nature of end-of-life care, can be common. 

“Ordinarily the family’s input into the decision-making is very important to give insight into who the patient was and what they might have wanted,” Emmerich said. 

“But of course, sometimes families are not in a position to give you that rationally or in a reasonable way without being overwhelmed with emotion.”

He says do-not-resuscitate orders are especially tricky because they are poorly understood. Some families worry that signing this order means overall care will be reduced. Knowing whether a treatment will work was rarely black and white. 

“When you look at a person’s best interest, medical professionals may conclude some treatments aren’t in their best interests and families can find it very difficult to understand that,” he said. 

A spokesperson from Queensland’s Office of the Public Guardian told Crikey guardians are only appointed as a last resort and the office takes all complaints seriously.

“[The office] is committed to upholding the rights, dignity and interests of all guardianship clients,” the spokesperson said.

For Darren and Karla, not being by Anna’s side while she took her last breaths has been heart-wrenching. 

“It’s been devastating,” Karla said, adding it had tainted the last memories she had of her mother. 

*Names changed for privacy.

To read more pieces in this series, go here.

For legal reasons, please don’t identify yourself or others under guardianship or financial administration in the comments.