Kate Carnell: On what families need to know before it’s too late

Thank you very much for having me, Melissa.

Thank you very much.

Well, Melissa, first and foremost, I'm a pharmacist, so I. I've been involved in health for a very long time and I owned my own pharmacies for a lot of years, 15 years or so. And one thing you learn in pharmacy is you get quite close to your customers, to your patients and see what they're going through. And that really changed my views on a whole range of things that I got involved with over time. Everything from drug law reform to what we're talking about today, end of life planning and care. Because the thing about pharmacy is you'll be dealing with, you know, with two customers, you know, two clients, Mum and Dad, they're getting older, then one of them can't come in anymore and then the daughter comes in and you see the whole process at the front line, right at the front line, right at, hi, Mrs. Jones, you know, how's, you know, whatever, how's your husband?

And you can see them, you can see what happens when people get very frail and particularly when plans haven't been put in place to make that end of life approach the best it can be. So from then I went into politics and was Chief Minister of the act for a couple of terms. And I'm probably one of the very few people who ever gave themselves the health portfolio. But then I gave myself treasury as well so I could pay for it.

A helpful combination. That's fine. And so since then I was CEO of the General Practice Network, the divisions of General Practice and then Small Business Ombudsman, Small Business and Family Enterprise Ombudsman, which was about looking after smaller businesses, which is the majority of Australian businesses, and how they interface with our society and with our economy. And a lot of those family businesses, you know, are part of that succession planning. Again, coming back to the issue we're talking about today, how you deal with situations where, you know, Mum and Dad have run the business for a very long time, they're getting older, the Kids need, you know, there needs to be succession planning in the business and that means having discussions and having plans. So it's not just about death and dying, it's about that whole economic scenario.

Through different chapters of life.

That's true. So I got involved with Beyond Blue right at the beginning of Beyond Blue, really, as I said, I was in politics. I was Minister for Health and also Chief Minister and having seen in pharmacy the huge issues that mental health produced in our society in a whole range of different areas, and I'm not going to go into them now, but for BeyondBlue, I was at the. The Premier's Conference Meeting, or COAG, as we called it, where Jeff Kennett got up at the end of the meeting and said, look, we've got to do something about mental health. Now. This was head of government meeting, not health ministers meeting. So they were all looking at him and saying, jeff's lost the plot this time. When was this?

This was back in probably 1999, I think it was while Jeff, while Jeff was still Premier. Yeah. Lost the election very soon after this. And what had happened is a couple of one of his daughter's friends had died as a result of suicide and she, his daughter, thought they were car accidents and said, dad, you've got to do something about road safety. Jeff asked for some work to be done on what had happened with these very impressive young men, he said, and it turned out to be suicide and mental health. Geoff then stood up in front of COAG and said, look, we just gotta do something here. He convinced John Howard at the time to put some money on the table as Premier of Victoria. He put, he matched and actually gave a bit more at that stage and then put pressure on others to put some money on the table. It was very small back in those days, but when Jeff lost the election, he went ahead and set up Beyond Blue. It was lucky Victoria kept the money on the table even after Jeff wasn't there. And Beyond Blue started in a very.

We were trying to do is make it okay for people to talk about it. You know, you can't fix something, you can't talk about.

Look, it's absolutely true. So most issues such as mental health are not about just about medicine. Obviously it is important to have psychologists, psychiatrists, the people who can medically support somebody. But a lot of it's about discussions about accepting people for who they are, being willing to ask, are you okay giving people support in the workplace, in families, when they are struggling, not doing well. So a lot of problems can be solved by having good solid discussions, good planning and accepting what people want and need.

Well, as I said, I'd been a pharmacist. Well, I'm still a pharmacist really, but I'd been a pharmacist for a long time and I'd seen, you know, what happens to families when that end of life process, the last chapter of life, isn't handled well. But then I thought I knew everything, you see, because I'd been Minister for Health, I'd done inquiries for the federal government, a couple of them into aged care. It's a complex area, but hey, I knew what federal governments did and state governments did and what the private sector did. I understood all that to Mum and Dad, and Mum and Dad were, you know, dad ran his own businesses for lots of years. They were capable people. They'd made it really clear that they didn't want to be saved, if you know what I mean, that they, they had the Philip Nitschke book On the shelf talking about, you know, if. If they ended up needing significant support, if they end up but ended up not being able to look after themselves. They wanted to be allowed to die.

So those discussions had. I call them the what discussion. So they didn't want to end up in a fetal position in an aged care place. They didn't want to be saved if their quality of life was significantly impacted upon. So we knew all that. We, Mum and Dad had built a very nice granny flat. It was probably a bit better than that. In the backyard of the old family home. We had railings, we had, you know, wheelchair access. We were planned to within an inch of our lives. But what we didn't really plan for and hadn't had the discussions about was how we were going to achieve what Mum and Dad wanted and that was to die in their own home.

Well, how we were going to do it as a. Yeah, as a family, but also the actual nuts and bolts of this. Yeah, Mum had had help. We started the process of help coming in for, you know, basic things like house cleaning, you know, all of those things. And Mum was really, really hated it because we were using some of the bigger operators and they sent different people.

Well, Mum just hated having different people that she didn't know in her house. So she said, I'm not having different people in my house anymore.

How often do you hear the same thing from people saying, yep, that's exactly what my mother said. It's exactly what my father said. So what we didn't do then is have sensible discussions about, okay, Mum, get that, but you know, you are going to fall. You know, mum's 90 at this stage. She's quite frail. Dad's looking after Mum. She was going to fall. And guess what she did? She did broke a hip, ends up in hospital. She's too frail for a hip replacement, so they pin it for pain purposes. Dad can no longer lift Mum. Now what do we do? Mum said she doesn't want people in the house. We haven't really, you know, come up with a plan on how to get around that. I found a really nice residential aged care facility, you know. Cause I knew the space, it was lovely. It looked a little bit like a resort. Mum could. I got Mum and Dad in together, which is a challenge. I thought, okay, we've got this nailed. They hated it. They were depressed. Dad didn't have a job anymore because he couldn't look after Mum. They died within 28 days of each other.

I mean, it was horrible. Horrible. They didn't deserve that. They deserved better than that. But it was really because we hadn't. We had planned what, you know, railings, you know, that sort of stuff.

So the inevitable nature of Mum falling, you know, and ending up in a situation where dad couldn't lift Mum so couldn't take her to the loo and all those things, how we were actually going to deliver on what we knew they wanted was, was a really big. Well, not surprise really, but, you know, big, you know, a failure from my behalf because we hadn't done that.

It's really different. And you know, really having in depth discussions as a family. And that's the other bit. I only got one brother, so it's not like we're thousands of us.

I'm the eldest.

The classic.

And my brother lives in the house, in the old family house at the front. But, you know, they're working and, you know, whatever the fact is, we hadn't sat down and said, okay, how are we going to give Mum and Dad what we know they want? Understanding what was going to happen. Mum was going to fall. Dad wasn't going to be able to actually physically look after Mum anymore. I think if we'd said to them, look, you are going to need 24 hour care and we could have managed that in the facility, you know, where. But that means you're going to have to have people in your house and you're going to have to have them, you know, available 24, 7 or residential aged care. Those are the choices here. I think they would have chosen residential aged care, at which stage it would have been their choice, at which stage I think, you know, the level of depression and other things wouldn't have been there. But mind you, they might have chosen to stay at home, at which stage it was their choice to have the care the problem was the decision making ended up being not with them. And I think that's the issue we find all the time.

You know, people having to make decision in hospital corridors because mum's fallen, Dad's fallen, something's happened.

Oh, look back, you know, Mum's in hospital, she's not real well. Dad's pretty distressed as you could imagine. It wasn't a good time to have, you know, an in depth discussion. The only discussion we could have is, okay, Mum can't come home, what do we do? What do we do? And dad said, I can look after her, but dad couldn't look after her. And, you know, so in those sort of situations, it's a really bad time to have rational discussions.

You've got to have them earlier. Yeah. And that's what Violet's about.

I think unfortunately, in our society, talking about death and dying is really difficult. You know, how often do you hear, oh, such and such passed on? Well, they actually just died, really. And so talking about death, even though it happens to everybody, which is, you know, we're all going to die. We all have I spec views on how we would like to die. We all have, you know, sort of very unrealistic views, like, I'll say, I just like to be run over by a bus. You know, here one minute, gone the next.

I was thinking run over by bus is bad because the poor bus driver.

Here one minute, gone the next. But that's not terribly likely.

So the thought that we could be here one minute, gone the next is very, very unlikely and sometimes not the best outcome. Because that process of dying, where you can have discussions with your family, with your friends, you can, you know, you can be, you can do a whole range of things that you may not have done otherwise, particularly with your very close family.

Yeah, you can handle much better if you can. If it's not here one minute gone, gone the next.

Well, the problem is it becomes medicalized. So what happens is it's about, it's about medicine, it's about you hope. You know, palliative care is fantastic, but generally people don't even access palliative care until the last days of life or when it's really about pain relief, keeping a patient or a person comfortable rather than, you know, the whole issue of dying over a period of time. So we medicalize it, we make it about doctors, not about families, not about discussions, not about planning, all the things that you would normally do for a stage of life.

Well, Melissa, you know, having been around health for a long time, the fact that 25% of beds in our public hospital system are taken up by people in the final stage of life. And that's really people like my mum back in the day with nowhere for them to go, you know, and getting treatment that is not useful. I mean, they're dying, they're going to die.

Look, hospitals are there to treat people, to make them better. They're not there as a comfortable, quiet, embracing sort of an environment where for people to have their final parts of their life. And you know, we're not talking necessarily about days. You know, we know that people are in hospital, you know, for regular admissions to hospital for very quite long periods of time in that final 12 months of life.

There's lots that are there for lots longer and you know, these are taking up hospital beds that are desperately needed to treat people and make people better. We hear about ambulance ramping and whatever. This is not to suggest we want to throw people in final stage of life out, but we want them to be where it's best for them and their families. And that means we've got to have discussions and plan it before they end up in a hospital bed with no plans, no residential aged care, no capacity to go home or to another family member or whatever it is that that family actually wants, which is just that.

It's also true, Meliss, when you talk about the sandwich generation, that's changed dramatically. You know, now 58 year old women, which is the average in this space, are still in the workforce.

Well, what's changed dramatically is back in my mum's generation, they weren't at work. They might work a bit, but mostly they weren't at work. Mostly people died lots sooner. So parents didn't live till 90, 91 like my parents did and mostly kids had left. Now increasingly the 58 year old woman is in the workforce working full time and we need her to for productivity purposes.

In society we need those women, well educated women in the workforce needing to continue to work for, you know, for their retirement, but also for our community more broadly or for our economy more broadly. She's potentially got kids still at home because they can't afford to buy a house. Yet so they're living at home to save on rent and all those things that we hear about all the time and have got elderly parents that are alive potentially living in their own homes, becoming frailer. So trying to balance all of those things while working full time is incredibly difficult. And I'd have to say I made the point earlier that I understood the aged care system. The aged care system is an absolute nightmare to navigate. It's really complex. So for people who've never interfaced with it before it's, you know, it's really, really hard. I always despair for people who English may not be their first language and may not understand the Australian health system or legal system.

Look, it's really hard, especially if you actually don't understand the system, don't even know where to go for help or support because there is home based care there. You know, you've got to have an assessment to determine what level of care and then you've got to access various other services. You know, it is actually quite complex even to access the services that exist and even know they exist. And you know, that's a problem with the system as we've got it today. Where do you go to to actually even know what, you know, what questions to ask, how to have that conversation with mum, what services are actually available, you know, in other words, where do I start?

Look, I think a checklist is really important, but look, the first thing on a checklist is to talk to mum or dad or whoever it is that is at the final, in their final chapter of life about what they want, you know, secondarily what the family wants and can do.

What's possible for the family. So I suppose we could say identify what truly matters to the person who is in that final chapter, but also what really matters for the family. And that will differ quite significantly depending.

The whole range of things.

So you've got to have the conversation. Not in a hospital corridor. Yeah, yeah.

Well, one of the important things I think for Violet in this space is to become a source of truth a bit, as I'm sure we will talk about. But Violet has great information on the website with the capacity to ask questions at 11 o' clock at night, which is probably when you need to ask.

But we've also got Violet guides and Violet guides are people who have been there, they've been through losing a loved one, they're very well trained by us at Violet on how to have those conversations, but also on how to support somebody through that decision making process. Because family dynamics are difficult. Look, let's be Fair. And where things go really wrong, as we know from our absolutely wonderful board and clinical advisory group, who are often doctors in accident emergency, in intensive care. So the great dilemma is, you know, one member of the family says, yes, Mum doesn't want, you know, the life support system on, she wants it off, she's made it clear. And another member of the family says, no, no, no, no, you can't do that.

You know, making sure you've navigated those family dynamics early, not when you're in hospital. In hospital is, is pretty fundamental, isn't it?

And being really clear about that and making sure families are really clear about that. You know, the example I gave before of one member of the family saying, I know Mum doesn't want to be on that life support system, and another one saying, no, no, no, it's really bad. You can't pull the plug. That's a. At an extreme end of this, but that happens all the time. So making sure that families are understanding and have had the discussions about if this happens, what's the outcome. And remember, the hard bit about this is you don't know what day you're going to die or what day mum's going to die or even what month mom's going to die. So this. There is a huge amount of uncertainty. So a lot of planning is about saying, okay, we're going to have a baby and this is the date, or within a week or two, it's going to happen. In this case, you can't. So it could be a year, it could be months, it could be years, you know, it could be a number of years. You just don't know, but you know it's going to happen. So I think the important bit is just to be really, really honest in those discussions, to say, look, Mum, we're all going to die. You're going to more than likely die before me because you're older, you're getting frailer. Let's have that discussion about what that's going to look like. Not about, oh, mom, you're going to die. No, it's about we all are. And we should have those discussions before we get to the final stage of your life. Well before.

And often the reality is it doesn't happen in one conversation.

Look, absolutely, in fact, huge amounts. So having a power of attorney, everyone should have one, because you don't know what will happen in life, really. You know, you could have a car accident and not be competent. One of the saddest things at the moment is, you know, the levels of dementia are going up, up quite significantly. And the problem is it isn't legally possible to have a power of attorney when somebody doesn't have the capacity to make the call. So you can't get somebody with significant dementia, Alzheimer's, whatever, to actually sign a power of attorney because the lawyer, stroke doctor, both of them need to be able to say, this person knows what they're signing and, and that. So putting it off for a long time often means you get to a point where you can't do it anymore. It's not possible. So power of attorneys are really important, obviously, wills are really important. And obviously it's really important to update your will as your life situation changes, as your kids get older, as things happen, you should, we all should do that. But importantly, things like, where are all of those documents that your loved ones are going to need when you die? And so just as simple as everyone's.

Stage and being able to ask, to know the things you've got to ask for. Like a whole range of people are going to ask you for the death certificate, so make sure you ask for one. You know, I mean, there's stuff that you don't even think about. And that's again, where some of the planning that Violet can help you with can mean when it happens and remember it's going to happen to everyone when that loved one dies, you know, well, I need this, this, this and this. I need to know where they are and I need to be, you know, to know the things that I need to do like closing down bank accounts or.

And of course, Violet has also helped with training people who deal with this, you know, at the banks, at the residential aged care, you know, we'd like more of those entities to train their staff, but it's really important to have staff that understand the trauma.

We can help train them.

Look, I think the real. Well, for me the most important issue is to be realistic. You know, Mum and dad are going to die, they're going to become less able to look after themselves and what does that look like? And how do we have the conversations now with them and with the family more broadly to ensure that that final stage, that final chapter of life is the one they choose and that you as a family are able to support. I mean, sometimes people want things that are not possible, but often they are possible if you have the time and the capacity to have those discussions. And Violet can really help with what those questions are, what things you need to think about and to, I have to say, take that weight off your shoulder of not knowing where to start.

And yet there is a huge number of Australians right now, often women, mostly women, but not always women who are in exactly that space, feeling like the weight of the world's on their shoulders. They've got balls in the air. Mum, dad, kids, job, you know, at the moment, financial pressure, cost of living, all sorts of things, and feeling like they're just being pushed into the ground because, you know, too much weight on their shoulders. Hopefully Violet can help take some of that weight off.

It's an absolute pleasure, Melissa.