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Barbie Duffy wrote her advance care plan in 2005. Image: Supplied
Barbie Duffy wrote her advance care plan in 2005. Image: Supplied

SocietyFebruary 27, 2023

Explainer: What is an advance care plan and why does it matter?

Barbie Duffy wrote her advance care plan in 2005. Image: Supplied
Barbie Duffy wrote her advance care plan in 2005. Image: Supplied

A new petition has highlighted the importance of advance care plans. But what actually are they and who needs them? We asked the experts. 

What’s all this about then?

The story of Barbie Duffy and the petition for “Barbie’s Bill” has probably got more than a few people curious about advanced care planning. As reported in a feature for The Listener this week, Duffy suffered a serious stroke that left her unable to speak, read or talk in October 2021. She had prepared an advanced care plan many years prior in 2005, which stated that she did not want to be kept alive if she was to experience a medical event that resulted in a “serious loss of mental or physical capacity” and her condition wasn’t likely to improve. 

Despite the details of her advanced care plan, Duffy was kept alive without the ability to speak, read, or move her right side. As she came to comprehend that her care hadn’t been withdrawn as she had requested, Duffy began refusing food and eventually liquid and died 58 days later. “She was very graceful and composed but we could see that there was a lot of suffering,” her daughter Louise Duffy tells The Spinoff. “It’s very hard to see someone you love like that, but she was someone who had made a decision and was sticking to it.”

The petition launched by Louise Duffy this week is calling for there to be a national register of medical advance directives, as well as a mandate that those directives are followed. It already has over one thousand signatures, and has gained the public support of Act MP David Seymour. “Mum would be proud if important change came out of this,” says Duffy. “She was always an advocate for end of life planning and she thought it should be talked about openly and these things should be dealt with practically.” 

The story of Barbie Duffy raises questions about advance directives. Image: Supplied

Okay, so what is an advance care plan? 

If you follow the advance care plan template handily provided here, the first part of the plan will outline the reasons behind your decision making. “It’s about what is important to you, what you worry about, how you like to make decisions, what would matter to you if you were dying,” explains Jane Goodwin, registered nurse and senior project manager for the Health Quality & Safety Commission advance care planning team.

The more “nitty gritty” advanced directive follows next, where you can state any specific treatments that you do or do not want in the event that you cannot communicate for yourself. This could include anything from wishing to withdraw from certain treatments to stating that you do not want to receive CPR. “Think of it like this,” says Goodwin. “The advance care directive is the ‘what’ and the advance care plan is the ‘why’.” 

Why should I make an advanced care plan?

Goodwin says that having an advance care is useful not just for you and your whānau, but for letting health professionals know what is important to you. “It’s that sense of having put your house in order a little bit,” she says. “Family find them incredibly valuable, because in those moments of crisis, it’s so nice to not have to make these decisions and actually have the voice of your loved one telling you what was important to them.” 

Journalist and author Wendyl Nissen, who has spoken publicly about the importance of advanced care plans after losing her mother to a serious stroke, says advanced care plans are about “taking control” of your life. “It just means that if you’re ever in that situation, one of your family can say ‘let them go’ if that is what you want. And I think for many people that’s as good as an insurance, having the knowledge that it can be done for you.”

When should I make an advanced care plan?

Dr Samantha Murton, president of The Royal New Zealand College of General Practitioners, says there is no time like the present. “I often say to people that the best time to do it is when you’re extremely well, when you’re not even thinking about the end of your life and what that might mean.” She will often raise it with patients who came in for their driver’s medical around the age of 75, and is used to getting the same reaction. “They’ll say ‘I don’t want to do that I’m not dying’, and I’ll say ‘I know you’re not dying, but this is a good thing for you to do’.” 

You don’t have to be dying to have a plan. Photo: Getty.

How do I go about making one? 

For the standard advance care template, you can get a free plan digitally here or ask for a copy from your health care team. Although it is not essential, Goodwin encourages people to fill them out with the support of their health care providers. “Particularly for the directive part, it just means that there is a person with some understanding of your condition and your health who can support you and make sure that the things you’re talking about are relevant.” 

When it comes to completing the plan, Goodwin says it is important to remember that you don’t have to do it all at once, that you can speak to whānau, friends and doctors throughout the process, and that you can go back and update it anytime you like. “When your plan is finished you can share it with your whānau, GP and specialists,” she adds. “Tell people that you have an advance care plan and where to find it.” 

What else should I be thinking about?  

In launching the petition, Louise Duffy hopes that the renewed interest in advanced care plans will get people having more conversations about death. “I think it’s a really good tool for some families to start talking about the topic,” she says. “When someone dies, it’s a really sad and confusing time. So to have some certainty around what their wishes are and how they see things, it can actually really help healing.” Nissen agrees that the death chat is an essential one.

“We have to talk about these things and we have to say ‘yes, let’s all do this, and let’s commit to each other that we’re going to do the best that we can for each other’.” 

Keep going!