Louise Duffy (right) with her mother Barbie (left) and son Charlie in happier times. Photo / Louise Duffy
Louise Duffy (right) with her mother Barbie (left) and son Charlie in happier times. Photo / Louise Duffy
THE FACTS
Louise Duffy’s petition, Barbie’s Bill, seeks changes to the advance directive system.
Duffy’s mother, Barbie, had her advance directive ignored, leading to unwanted medical interventions.
The petition urges a standardised system for advance directives, similar to the assisted dying framework.
When I was with my Mum, Barbie, while she was dying, I kept thinking: “This isn’t right. How did this happen?”
Mum had an advance directive, also known as a living will. We’re all aware people can say no to surgery or treatment and choose to have DoNot Resuscitate orders. Advance directives work in a similar way and allow people to say no to care or treatment during times they are unable to communicate or make decisions themselves.
But when Mum was admitted to hospital after a major stroke, both her directive and me as her legally appointed representative were ignored. She was given medical interventions that she had clearly refused in her directive.
Mum died on New Year’s Day in 2022 after a painful, prolonged experience she never wanted. Which left me asking: why are the two systems in New Zealand that lawfully enable people to die treated so differently?
Parliament has supported assisted dying, which is now available to people with a terminal condition who choose to have medical intervention to enable them to pass.
Advance directives are for people in other situations who choose not to have medical intervention to enable them to pass.
Both options are based on informed consent – a cornerstone of our health system – and are meant to focus on allowing people to die well.
Yet the way they are treated could not be more different.
Assisted dying is covered by one Act of Parliament. It ensures patients are treated by specially trained doctors who don’t object to their choice. There is a national framework with safeguards, reporting and independent monitoring.
Advance directive rights are scattered across three acts and a guide document. There is no special training, nothing to make sure patients are treated by doctors who respect their choice and no standardised national system. So there are no safeguards, no reporting and no independent monitoring.
Louise Duffy presenting to Parliament's Health Select Committee earlier this year.
Both the Petitions Select Committee and the Health Select Committee considered my petition and have now asked Parliament and government agencies to put in place:
a national advance directive database
a national template that is easy to understand and complete
a review process to keep directives up to date, so medical and care teams feel confident following them
a system to make sure medical and care teams understand the legal standing of directives and consistently honour a patient’s informed consent
More and more people want options for what dying well looks like to them. Both assisted dying and advance directives give people choice and control in this area in a respectful, fair and humane way.
Now that MPs from across the political spectrum have recognised the directive system is broken, the Government must act. This is not just about laws and processes – it’s about people, like my Mum, whose rights and wishes deserve to be respected.
Because, in the end, dying well is an important part of living well.
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