Everyone has the right to live the life they want to live, even if that involves taking risks. Aged care providers are expected to help make sure everyone understands those risks and to help manage them.
But decisions about taking risks can be really challenging situations, with lots of opinions and often emotions involved.
So, what can this look like when you’re supporting someone in their home, and how do people navigate these tricky situations in real life? Find out in this episode of SNACK.
Special thanks to all our guests, and to the organisations that helped:
Looking for some inspiration? Check out these great resources and links:
SNACK has been produced by COTA Queensland as part of the Homecare Workforce Support Program, which receives grant funding from the Australian Government.
00:00
We acknowledge the traditional owners of the lands on which this podcast has been produced and we pay our respects to elder’s past and present for anyone accessing aged care the older person themselves. It’s essential. They’re aware of those rights. But it’s absolutely essential that the aged care workforce has those rights in the absolute forefront of their mind. There’s a real level of trust between us. And
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I respect her for the job that she does. cheerfully. And I know she respects my attempts at Independence.
00:48
Welcome to snack, the aged care podcast where we break down some of the big questions around what it really means to be person centred. I’m Dr. Andrea Petrovsky. I’m a gerontologist and I’m passionate about hearing and sharing the real life experiences of ageing.
01:05
Today, we’re taking a look at an issue that trips up a lot of people. And that’s autonomy, rights, and risk. Everyone has the right to live the life they want to live, even if that involves taking risks. Aged Care Providers are expected to help make sure everyone understands those risks and help to manage them. But decisions about taking risks can be really challenging situations, with lots of opinions and often emotions involved. So what can this look like when you’re supporting someone in their home? And how do people navigate those tricky situations in real life? In this episode, we’re going to find out.
01:46
We spoke with Jill who brings the perspective of both a family carer and an experienced care professional.
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So Joe, what are some of the common situations you’ve seen in your career where people’s rights and autonomy can be put at risk? Every situation is unique. And what I’ve come to understand, though, is that family dynamics, and especially discordance within families, play a very big role in where people’s rights and autonomy can be put at risk. And try to keep in mind that family is often shaped by existing relationships by gender roles.
02:30
Families are shaped by cultural norms and expectations that can overwhelm and undermine a client sovereignty.
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The client gets lost behind all of this, sometimes they get lost behind those expectations from family, they get lost behind their condition, they get lost behind their diagnosis.
02:55
And they get lost often in the demands of caring for them. And that dignity of risk gets a backseat then, because there’s just so much else to consider. It’s such a complex mix. So how do you as a professional, navigate your role as an ally or as a person centred service provider alongside your responsibilities to your organisation and to yourself to your own? well being? Because the reality is you do work within certain constraints, don’t you? Yes, yeah. It’s a balancing act. You know, knowing what my organisational restraints are,
03:34
and getting to know someone really well as empowering as a professional. And that support mix, because that mix of understanding helps to anticipate potential issues and navigate ways around difficulties.
03:49
It helps to negotiate a solution as partners.
03:54
That’s the important bit I think it’s the negotiating, negotiating for a positive outcome for all concerned.
04:05
The advocates at Ada, Australia see a lot of situations around autonomy. So we spoke with Renee and Lizzie, who are both advocates about how they see these playing out in their roles. Here’s what Renee had to say about the ways that the dynamics of caregiving and safeguarding can impact people’s autonomy.
04:26
You know, I say that I’ve got an ageing parent and I start to think actually, I’m getting really worried about this person. I don’t think that mums safe living alone anymore. And I think that it might be best if we start looking at an aged care facility and those types of things but mums saying you know what, I would rather die than go into an aged care facility or over my dead body will I do this, those types of things? So I think in that instance, what we see often is that the risk is then or the worry about that risk is trained
05:00
spurred on to the client,
05:02
as opposed to me managing my anxiety or my worry about that. Because that shouldn’t Trump that person’s right, I would strongly encourage people to be mindful of the fact that what the person wants is always paramount. And that also shows the benefit, I think of debriefing, because when Lizzie and I were talking about it, you know, we were talking about something. And she was saying, I think that this might be a case of the people managing their fears or their anxieties around it. And up until that point, I’d actually thought I can really see why they’re worried. And you know, when people have enduring power of attorneys, that’s something that we see a lot. But the thing that some people don’t realise is that that is you not substituting the decisions for the ones that you think are right, but actually doing the same thing that that person would have chosen, should they have had capacity, there was a legal forum. And one of the speakers that was talking was saying to us that you know, the different lenses that we apply to risk and decision making, if you actually place the same lens over it. You know, one might assume, Renee, actually, it is quite dangerous for you to be driving to work every day, because you start work, when it’s peak hour, you might have an accident, you know, what if you break down on the side of the road, or you get lost, or those types of things, and everyone would be like, that’s a little strange, she has to get to work. And that’s the time it starts. So of course, that’s a fine risk to take. But if that was a 78 year old, say, who wanted to go to the corner store on their mobility, Scooter all of a sudden were like, what if their thing breaks down? What if they get lost? What if they’re, you know, so think about the things that you can do to support somebody rather than what’s not possible? I think that we’re quite risk averse, by nature. But people actually have the right to make decisions that best suit them.
07:00
We know that sometimes issues can come up because of organisational policies or rules or procedures that can be really risk averse or over protective. We asked Lizzie what ideas she could share with care staff who might be struggling with the rules and restrictions they’re working under, that they might feel are ageist or undermining a person’s dignity or quality of life? Yeah, so I think there’s a few things to really point aged care workers in the direction of one of the most important is sitting within the Aged Care Act specific legislation around the Charter of Rights. It’s absolutely essential that the aged care workforce has those rights in the absolute forefront of their mind, and integrating that older person’s rights into their practice. I also think that the aged care workforce need to have a really proactive and a really healthy relationship with advocacy where we can work together, and really complement each other’s roles. We’re working in that very formal sense of an advocate. But often, they’re very much working as informal advocates, they are the person on the ground working directly with the older person. And again, if we look at that
08:28
the philosophy of advocacy that we practice is very much standing alongside someone to ensure their voices heard. The other thing that I think is really important, and there’s some really good information.
08:45
Sitting with the Aged Care Quality and Safety Commission, around something called dignity of risk, we need to be challenging that that risk averse approach which is often diminishing and robbing people of their quality of life and their independence. So you must hear a lot of stories about the conflicts around risk taking and autonomy, in your work as an advocate. What are some of the situations that you come across a lot? What I find as an advocate is even if it is something quite small, the harm it causes to a person when they do feel like they’re not seen or heard. Often what we’re doing is simply repeating what that older person has already actually said for themselves.
09:36
We asked Lizzie for some examples of conflict between autonomy and risk taking and what it looks like when those are handled well. So as well as the example of deciding whether to move to residential care which Renee also raised. Lizzy also talked about decisions around mobility where someone is allowed to walk, how they access the community what transport or mobility aids they can use.
10:00
and decisions around food and nutrition, especially where there might be risks around swallowing and choking. The times where we see that done well, is where the older person is sitting at the centre of that decision making is given the option and the space to explore that, rather than again, where we see
10:25
that paternalistic approach, whether it’s medical practitioners, whether it’s family or friends, stepping in and overriding the older person. So there’s a lot of fear around cognitive capacity and decision making. Every person is individual and each person situation needs to be looked at with those individual merits, again, around whether someone has had an impairment in their capacity that is only temporary, and given the chance to recover and ensure their capacity is reassessed, where they are able to again, practice and content and take control of their own decision making. Yeah, so whether it’s that they have an initial assessment and would like a second opinion, whether they would like a choice to even refuse that professionals recommendation, and again, take that level of risk that they don’t choose to follow that, that direction put in place from the healthcare professional, just things that so many of us take for granted.
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But again, as an older person,
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all all of the aspects of their daily living are starting to be really challenged. And again, is incredibly difficult for older people to stay in control of their own lives and their own decision making. I’ve seen it very much with my own eyes as an advocate,
12:04
that when someone has been very much robbed of their decision making and their autonomy and feel incredibly disrespectful and hopeless and helpless, that often what I see is, is almost the stripping of the life that they’ve lived by, I’ve seen a transformation where someone is able to re engage with their decision making and with pay choices, I believe truly have seen a transformation in that person’s physical and mental well being is not words don’t even have to be said, an older person feels and knows, when they’re in company where they’re being respected or disrespected, heard or not heard.
12:51
It’s it’s so apparent, and they’re so aware of it. And it makes such a profound difference.
13:01
We spoke with Maureen and another Renee, who both received support at home about what their care staff do that helps support their independence and autonomy. Let’s hear from Maureen first. My care worker comes she is very respectful of what I can and can’t do.
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She was supposed to come and change the beds and do the washing. And I say to her, I can do that. I can take the sheets off and put them get them going in the washing machine for you.
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My house is a bit of a joke jumble because I’ve got art stuff everywhere. And she respects that she never tries to move things or
13:48
say Oh, this is in the way, you know, she would never do anything like that. There’s a real level of trust between us. And
14:00
I respect her for the job that she does. cheerfully
14:07
and I know she respects
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my attempts at Independence. She’s never forceful about you know, you you perhaps you need a walker at this time. Yeah, another thing is she’s never over protective of me,
14:28
which is a really good sign.
14:33
Here’s a great example Renee shared with us from her experience
14:40
and because my mobility is now severely hampered
14:45
I don’t do a lot but but occasionally I like to push the envelope of beef. And one of my carriers was my actually my main carrier was with me that day. And I really really wanted to plant some seeds I’m a bit keen on the stations you see
15:00
And I had packets of seeds in a raised bed, you know, under normal circumstances, it would have been really simple.
15:07
She knows how wobbly I am.
15:11
She didn’t think it was a wise move. But she quickly suggested that she go into the garage and grab my spare Walker, and have me use that. So she put that at the bottom of the little ramp I’ve got in the patio. And out we went. And the walker, of course, can carry things as well. So that was practical. And yeah, the planting was duly done.
15:34
And of course, the thing is sitting there now making me much more able to get out into the garden on my own, because I’ve had a couple of serious falls out there.
15:44
And, yeah, I’m happy that that was a really sensible suggestion.
15:52
What an amazing opportunity. This has been to hear real examples of what some of those ideas around autonomy and independence and dignity of risk can look like, and why they’re so very important. What we’ve heard from these guests really reflects again, what we’ve been talking about in previous episodes, leaving your assumptions at the door, being open and flexible, finding ways to make things work, and really thinking about what will make a difference to people. And above all, being respectful of each individual person and where they’re at. And this is all part of a way of working that helps to make sure a person’s rights are kept at the centre of all you do.
16:37
That’s today’s snack. Thank you so much for joining us and a big thank you to our guests for sharing their insights and ideas. If you want to find out more, you’ll find some great resources and other good stuff on our website Kota QL de.org.au. You’ll find links in the show notes. And please don’t forget to subscribe wherever you get your podcasts to make sure you get the next episode as soon as it’s out. Until next time, thanks again and goodbye from the Kota Queensland team.
17:04
This podcast is part of the home care workforce support programme, which receives grant funding from the Australian Government
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