Hagen Hopkins
Barbie Duffy was a fit 78-year-old who enjoyed 10-kilometre tramps with her friend every Monday on the many hill trails around the South Island town of Methven.
She was looking forward to visiting her daughter Louise Duffy and her grandchild in the North Island in a few days, to see the property she had recently helped the family shift to, when, out of the blue, on October 6, 2021, she had a major stroke.
It left her unable to speak, read or write. With limited comprehension and movement, she needed help and care around the clock.
Barbie on a South Island hike in the ’90s.
Louise was soon at her side and while she took in the news about Barbie’s condition, she knew what her mum wanted.
“I knew she would want care withdrawn so she could be allowed to die if she was ever in this position,” says Louise. “We had talked about it and she had written it down in an advance directive. I thought this was everything needed for the doctors to let her go.”
But that didn’t happen. Barbie’s advance directive wishes were not followed and she was kept alive because the medical profession has a “duty of care” to keep people alive at all costs. Weeks later, when Barbie could understand her situation, she chose not to eat. It took 58 days for her to die.
“She was released from hospital into a care home, where she could have lived like that for years,” tells Louise.
Throughout Barbie’s ordeal, Louise, who has a law degree, never gave up trying to get her mother’s right to withdraw care followed.
“When she was in rehabilitation in hospital, she had a 30-second memory. Then one day, I realised she knew what had happened and could understand more and could retain some information.”
The devoted mum at Louise’s wedding in 2013.
With the hospital closed to visitors because of a Covid scare, Louise talked to Barbie on FaceTime about her options.
“I went through two at-home private-care options, along with residential care, and I also said she had her advance directive,” tells Louise. “I told her, ‘The hospital has told me your wishes will be followed if you stop eating.'”
When the hospital reopened and family visited, they said Barbie was looking thin.
“I realised she had chosen to do the only thing she could do to control her situation and that she had chosen a very hard road.”
Louise knew her mum would be fighting her body’s instincts to eat, and that she and the family would support her through what would be an extremely distressing time.
“She was being presented with three daily meals under a duty of care, so we made sure someone was with her as much as possible to help distract her.”
It was hugely upsetting for the family to find themselves in a position where they were supporting their mother so she could die.
“We didn’t know until later that without medical care, she would not have survived the first 10 days. She could have had a controlled, medicated passing if the hospital had followed her advance directive instead of all the pain and suffering she had to put herself through.”
The New Zealand Medical Association has a template for advance directives and advises that “Evidence of an informed advance decision, whether oral or written, should be taken into account when deciding what is in the individual patient’s best interests.”
Louise says Barbie was a woman who took an interest in others and believed in positive change. “As a high school teacher, she used to organise class trips to Christchurch, music concerts, as well as tramps and progressive dinners,” says Louise. Locally, she got behind the removal of wilding pines in the high country, volunteered in the community, helped those who were unwell and made time for older locals who wanted company. “She was the kind of woman who made things happen.”
Louise still feels deeply about this time, but the family’s experience left her determined to change the system. She put together Barbie’s Bill, which was presented to Parliament on February 23, and a petition launched to make advance care plans count. The House of Representatives is being asked to implement a national register for standardised medical advance directives and mandate that those directives are followed.
Based on legal and medical advice, Louise says this is not a euthanasia issue. It is a move to make sure people can make clear advance directives that can be instantly accessed on a centralised database. So, if a patient has an accident, medical event or an illness like dementia, doctors will know what care they do and do not want, and if they have chosen to withdraw care so they can be allowed to die, that this wish will be followed.
“I know Mum would be right behind me to make this happen,” says Louise.
To learn more or to sign the petition, see barbiesbill.nz
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