Sunday, April 14, 2024

Barbie’s Bill: ‘What Is Most Important To You: Living As Long As Possible, or Quality of Life?’

Barbie’s Bill is a new petition going towards parliament that looks to give us more control over our care, should a health crisis strike. It comes after Louise Duffy watched her mother, Barbie, choose to starve herself to death after her advance directive wasn’t followed after she suffered a severe stroke. Louise speaks to Capsule about why she wants to see change, so that no other family has to go though this.

In 2005, Louise Duffy’s mother, Barbie, took the ultimate step in forward planning and created an advance directive for herself. She was in her early 60s at the time, but as an independent, highly active woman, with both her children living overseas, Barbie wanted to make sure that if her own worst-case scenario happened, she had the plans in place to make sure she got to live – and die – as she wanted.

But 16 years later, when a life-limiting crisis did hit, Barbie’s best-laid plans did not come to pass. Her experience is the foundation of Barbie’s Bill, a petition that has just been released this week. In October 2021, Barbie suffered a severe stroke that left her mostly unable to communicate, with severe physical limitations; basically, exactly the circumstances that she had created that advance directive for, all those years earlier.

But when it became clear that her wishes weren’t going to be followed, Barbie then took the one bit of control she had left and chose to refuse all food, and then, finally, all liquids. It took her 58 days to die.

‘Mum loved life. She just didn’t want to have a life where all the things she enjoyed about her life had been taken from her.’

An advance directive is basically a care plan where you lay out what medical treatment or interventions you would want to receive in the event of becoming unwell. It’s done well ahead of time, so your loved ones and medical staff, know your wishes if you cannot communicate them yourself.

“We were really happy to support Mum’s advance directive, because she had made a clear decision,” says Louise, Barbie’s daughter. “People who make the decision to have an advance directive, they have given this careful consideration. Mum had been to see a lawyer, she’d seen her GP, she’d had somebody witness the document. This wasn’t a spur-of-the-moment decision and I think you see that with the End of Life figures – this isn’t something that people are rushing into.”

Two of the main aspects of Barbie’s Bill are the creation of a centralised database for people’s advance directives, and also a clear, standardised template of an advance directive, so people know exactly what their options are. This way the person involved, their family and the medical team all know exactly what to expect, and there is legal backing for the medical team to follow the directive.

“One of the questions we’ve put in is ‘What is most important to you: living as long as possible, or quality of life?’” Louise says. Those are two big questions, and having everyone on the same page before a health crisis eventuates can be life-changing for all involved.

“We all have situations where friends, and family, and loved ones find themselves in circumstances they never expected,” Louise says. “To know what your loved one wants – and what their views are – is invaluable. When somebody dies, it’s a really sad and confusing time, so to have some certainty around what that person believed in, and what they wanted, it really helps.”

The irony, of course, is that this was exactly what Barbie had planned for, when she wrote out her advance directive. But the grey area following her stroke and what her supposed diagnosis and recovery could be, versus what her actual lived reality was, meant that there was confusion around the advance directive and it wasn’t followed.

In the immediate aftermath of Barbie’s stroke, it wasn’t clear how severe it had been. “We were not the experts – what we were wanting was the probable outcome of what was going to happen to Mum,” Louise says. “And as a family, we were given a wide spectrum of just how much Mum would heal.” There was a range of possibilities – that she might be able to walk with a mobility aid, that she might regain her ability to talk.

“We wanted the probabilities – and the probability was the condition that Mum ended up in, where she couldn’t speak, read or write, that she couldn’t move her right side, and there had been quite a bit of neurological damage, so she couldn’t comprehend anything that was long, complicated or abstract.”

The issue came because the medical team were walking towards a hopeful future – the best case where, in time, there was a small chance Barbie would get better and recover some quality of life. But Barbie’s family were living with the actual reality for the condition – and the day in, day out reality of someone who was trapped within their own worst-case scenario.

Louise and Barbie’s family had planned for a future – what kind of care she would need, the roster of people and activities that would be available to keep her company, keep her sane. But Louise knew her mother, and knew that this future went against what she wanted. “I explained about the advance directive and said to her, ‘if you’re not happy with the options, if you stop eating and drinking, the hospital has said they will not intervene.’”

It was a conversation they had many times – Louise explaining, Barbie listening. At the beginning of November, under a month after her stroke, Barbie stopped eating. Just before Christmas, she refused all fluids and on January 1, 2022, she died.

‘The word I would use to describe that overall time was ‘distressing’. We just tried to make things feel as normal as possible, and just let her know she was loved.’

“Mum loved life,” Louise says. “She just didn’t want to have a life where all the things she enjoyed about her life had been taken from her. I’m sure that part of her wanted to remain, and that’s why it took her so long, but she knew that, on a long-term basis, this wasn’t for her.”

It was very hard, Louise says, for her and Barbie’s family to watch this happen. But Louise says she knew she had to honour her mother’s wishes. “I thought, ‘I’m not the person sitting who can’t do what they want, whose stuck in a room until someone takes me out. I don’t have strangers bathing me, and feeding me, and I can clean my own teeth.’ She couldn’t do any of that. Whatever decision she made, we would have been 100% behind. And the decision she chose was the advance directive.”

And to choose to die by refusing food, that’s a decision she made three times a day, every day, for 58 days. “She was comfortable with her decision and she was trying to make us feel comfortable with it as well,” Louise says. “Physically, it was extreme. We could see the changes involved, for Mum, and there must have been suffering involved in that.”

Within the restrictions, they tried to give Barbie as much of a normal life as possible. Louise was able to take her out as best she could, given that Barbie’s entire right side couldn’t move. “The word I would use to describe that overall time was ‘distressing,’” Louise says. “We just tried to make things feel as normal as possible, and just let her know she was loved.”

“When people ask me how Barbie’s Bill came about, it’s because at the time I knew ‘this isn’t right.’ Her voice was clear, and I just couldn’t understand why it wasn’t followed, and we just weren’t knowledgeable enough to know what we should have been trying to do,” Louise says.

Following her mother’s death, Louise took six months out to process what had happened. But after that, she still knew what she wanted to take from the experience – and that was change. Change to make sure no other families in Aotearoa had to go through this. She had a lawyer, a doctor and a nurse go through her plans for Barbie’s Bill.

“We don’t want accountability for what happened, we want change. And if you make these changes, it’s a good thing for everyone – for the people, for the family but also for the medical system. Without these changes, there isn’t certainty and people deserve to have some control over what their life looks like.”

For more information on Barbie’s Bill, you can follow along on Facebook and on Instagram, and sign the petition here.

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