Barbie’s Bill is a petition that looks to give us more choice and control over our care and future should a health crisis happen.
Barbie Duffy loved travelling, the outdoors and family. She enjoyed weekly 10km hill tramps with a friend around her South Island hometown and visited family here and overseas often.
Active and involved, Barbie walked daily, supported local conservation, volunteered and would pop in for a drink and chat to give older locals company.
Knowing she valued being able to enjoy life, in her early 60s when fit and able, she made an advance directive – otherwise known as an advance care plan or living will.
An advance care plan says what treatment you do or don’t want if you are unable to make decisions for yourself – from withdrawing care so you can pass, to having all life prolonging measures.
When, out of the blue, Barbie had a severe stroke in October 2021, aged 78, the circumstances for her directive had occurred. Despite her clear wishes, she was kept alive instead of being allowed to pass.
Unable to speak, read, or write, and with limited movement, she needed 24/7 care. Weeks later, when able to understand more, she took her one last bit of control and refused food and then fluids. It took her 58 days to die.
“Mum loved life, but she didn’t want a life where all the things she enjoyed had been taken away” says Louise, Barbie’s daughter.
NZ Health Quality & Safety Commission’s Jane Goodwin, a registered nurse and advance care plan team manager explains “Family find them incredibly valuable, because in those moments of crisis, it’s so nice not to have to make these decisions and actually have the voice of your loved one telling you want was important to them”.
Feeling “it doesn’t have to be this way – we can do better”, Louise put Barbie’s Bill together with input from a doctor and lawyer.
The Bill aims to create a directive registry that can be accessed anywhere, anytime; set up a template to provide clarity about people’s choices; and provide legal backing so medical teams follow directives.
One in three Kiwis are 50+. Care plans can be a great way to have choice and control of your future and to talk to family about whether enjoyment of life of living as long as possible is important to you.
To ensure your voice and choices are followed, sign and share the petition during April at www.barbiesbill.nz.