Saturday, July 20, 2024

Kiwis want greater protection of their advance care plans

A petition launched recently aims to ensure no New Zealander suffers the fate of Barbie Duffy, who died after 58 days of declining food and, finally, water.

Called Barbie’s Bill the petition spearheads a campaign to entrench in law New Zealanders’ rights to create an effective care plan system that medical and care teams must follow, according to a media release. At present Kiwis can have an advance directive/care plan, but these are not always followed.

The release claims new research shows 77 per cent of New Zealanders are in favour of parliamentary reform to protect the wishes laid out in an advance care plan. “I believe New Zealanders would be very concerned to learn that care plans are not always followed,” said Louise Duffy, who is advocating for Barbie’s Bill.

The distressing circumstances surrounding the death of Louise’s mum, Barbie Duffy, is the catalyst for the campaign.

Barbie had prepared a clear advance directive, giving informed consent to exercise her right to die in the event of a serious and irreversible loss of mental or physical capacity.

In October 2021 Barbie Duffy suffered a severe medical event which left her unable to speak, read or write and with limited comprehension and movement. When Barbie’s directive was not followed and she was not allowed to die, she took matters into her own hands and refused sustenance. First food and later water.

Barbies’ daughter Louise Duffy, frustrated by a system that did not follow directive instructions, initiated Barbie’s Bill to create an effective directive system and make directives legally binding, so that a patient’s autonomy, wishes, and informed consent are upheld.

“People’s wishes in a care plan should be respected and followed and no-one should have to resort to drastic action,” said Louise Duffy.

“If mum’s wishes had been followed, she would not have survived the first 10 days and she would have had a controlled and medicated passing. Instead, she had to put herself through protracted pain and suffering.

“It took 58 days for mum to die, it was an extremely hard time which mum managed bravely and gracefully. It does not need to be this way and we can do better. Advance care plans should count.”

Barbie’s Bill also calls for a national register to store and manage access to plans as well as introducing a standardised template to create clear, effective directives which should be completed with the help of family and a GP.

According to the release, the recent research shows almost 78 per cent believe if they are incapacitated their medical care should be in line with their recorded wishes. 53 per cent believed family should also have some say and only 21 per cent believed the medical profession should have control. The ACT party has agreed to take the Bill to parliament in early May.

ACT leader David Seymour said: “If a bill is successful, it will ensure that where the criteria of a person’s advance directive is met, their advance care plan must be followed.”

People can support this bill for legislative reform by signing the online petition at https://barbiesbill.nz/

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