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A question of dignity

Aug 8, 2019 • 15m26s

After Kate O’Halloran’s grandmother was placed in residential care, her family complained about her treatment. The centre responded by threatening to withdraw her place.

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A question of dignity

53 • Aug 8, 2019

A question of dignity

[Theme music]

ELIZABETH:

From Schwartz Media, I’m Elizabeth Kulas. This is 7am.

The royal commission into aged care has heard evidence of extreme deprivation and mistreatment. It’s also inquired into the toll taken on people caring for the elderly. Kate O’Halloran on looking after her grandmother and what happened when she complained about her treatment.

[Theme ends]

[Music starts]

Archival tape — Scott Morrison:

“You ask a simple question: how widespread is this? How far and wide does it go? Does it touch on the whole sector? Now, until we have clear answers to those questions, I think Australians will be unsure. And that’s why as Prime Minister, last week we discussed this together as a cabinet and we decided it was necessary to move forward with a royal commission into the aged care sector.”

Archival tape — Unidentified Man 1:

“Please open the commission…”

Archival tape — Unidentified Woman 1:

“Dozens packed two courtrooms, many family members of victims who have suffered horrifically.”

Archival tape — Unidentified Man 2:

“These witnesses are expected to be crucial in determining just how bad the problem is.”

Archival tape — Unidentified Woman 2:

“This Royal Commission is, of course, a chance for older Australians, their families and their loved ones to tell their story about what has happened to them when trying to access quality care in Australia.”

[Music ends]

ELIZABETH:

Kate, how did you first come to interact with the Royal Commission into aged care?

KATE:

So I suppose it was probably more by accident than anything just by nature of having cared for my grandma, who lived in her own home up until about January this year, at which point she went into a residential aged care facility.

ELIZABETH:

Kate O'Halloran is a writer and research fellow at Victoria University. She wrote about the aged care royal commission for The Saturday Paper.

KATE:

From that moment on, I was at the frontline of being exposed to a lot of the issues that we've heard come up so far in the royal commission. At this particular facility, there was quite a strong community that formed between a lot of the residents families. We even started up our own WhatsApp group, and we actually shared a lot with each other about what was happening with our families and I found that there were a lot of people who were really invested in the Royal Commission but probably weren't really sure how to best contribute.

ELIZABETH:

Kate, what was it like becoming a carer for your grandmother?

KATE:

She lived at home until about... She would have been aged 83, I think, when she first went into aged care facility. She'd always expressed a preference to stay at home. And my mum had to move into my grandmother's home. My youngest sister who had just finished uni decided to take on her care pretty much full time. She had advanced Parkinson's, probably went on for about a decade before signs of dementia emerged. With dementia, it meant a lot of complications like hallucinations, delusions. She often thought we might be poisoning her with her medication and was very confused, and that was probably when we had various recommendations from specialists and G.P.s that it might be worth putting her into a facility at least for some respite.

There's obvious benefits to being a carer for someone you love so much, you know, and I just feel that I was able to be there for and think about things that she might enjoy that I'm not sure she would have had otherwise. But it's also incredibly heartbreaking. She went so devastatingly downhill very quickly, to the point where I just couldn't console her, you know? It was just hard to think that anything was more important than being there for my grandma, and I still feel that way. You know, most primary carers end up being women in their 50s or even under; one in is under 25. So, I think it's a real burden that it places on your social life, your career progression and that can have a real detrimental impact on your own health.

ELIZABETH:

So what was her experience like, when your grandmother was moved to a residential care facility?

KATE:

Unfortunately, I felt it had a very negative impact on her. It was expected that residents would use their nappies. They were all put into nappies. She very quickly was placed into a large chair. All the staff called a princess chair, which is basically like a big recliner so she would go directly from bed into that recliner and basically be in it all day.

She was delusion and hallucinating so her communication wasn't always that rational, but we communicated quite a bit and I found sometimes she would just be mute. I couldn't talk to her a lot of the time.

ELIZABETH:

That's incredibly distressing.

KATE:

Yeah, yeah, it was horrible.

I can't tell you how many times I witnessed falls when just people weren't being watched. Some of the residents got physically aggressive at times. And when you don't have anyone monitoring anyone in that communal space, it's a very...it’s accident prone. I mentioned a lot of these issues. I said, look, I don't have an issue with individual carers, I don't think this is a problem of the wrong people working here or...it's a systemic issue, there's just not enough supervision, there's not enough time for them to do what they need to do.

I mean, another issue that doesn't get talked about a lot is the ratio of care staff and nurses, so, we regularly had one registered nurse who would be responsible for the more severe memory support unit but also the lower care facility and a high care upstairs.

So this nurse basically, you know, rotates between the three locations and has a buzzer, on call. It basically means they're there for dispensing medication and then that's it. Then you've literally got two care staff for all these people with severe dementia.

Look, there's so much I could say but so many families felt they actually had to be there every single meal, you know, because sometimes you just worried that they wouldn't get fed. You know, how can you feed 20 people who can't use a spoon or a fork? This particular day, another staff came in from a lower care facility to look after older residents. And she said, I can't find the other carer, so there was only one, and she herself was incredibly overwhelmed, said this is not fair. I can't watch these people properly, I can't attend to their needs. And then she said but you know, we always complain to management, they don't listen to us, you know. Nothing happens. If you complain maybe something will happen.

ELIZABETH:

We’ll be right back.

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ELIZABETH:

Kate, you’ve been reporting on the Royal Commission into aged care. You also made complaints yourself to the facility where your grandmother was being cared for earlier this year. What were the complaints you made to that facility?

KATE:

I made a formal written complaint a few weeks after she went into respite. I complained to head office, so I went kind of as high as I could go. I listed a whole range of things, not just for my grandma but the other residents. Actually, one of my key motivations probably to reach out was that I had spoken to a lot of the carers working there about their experiences of this situation and I had one of the staff, who was just so lovely, say to me; ‘You know, I just pray to God every day that I don't end up in a place like this.’ That was like, the worst possible future she could imagine for herself was being somewhere like that.

ELIZABETH:

Did formal complaints that you made have any effect?

KATE:

Yes, I think they worried management. They did agree to a short trial of three staff at night rather than two, which all the families were extremely grateful for and appeared to make, you know, some difference. It certainly was a little bit calmer at night, but they actually didn't continue that arrangement. It happened for a couple of months and then they said look, we're not continuing it, it was always intended as a trial and we think it's functioning fine, which none of the families felt that way.

ELIZABETH:

So you didn't see any lasting change to the situation that your grandmother faced in the home?

KATE:

No. But actually what ended up happening was that the home then threatened not to take her on as a permanent resident. It really distressed my family because the last thing I wanted was to uproot her again. Someone with severe dementia who is already extremely confused. I felt like maybe that was the best option if that was the way they were going to respond. But yeah, it was very upsetting for everybody. They actually had said that there was a room available and there would be no issues and then they said they weren't sure anymore that there was going to be space.

ELIZABETH:

How long was your grandmother living in the aged care facility?

KATE:

So she went in for respite. Around January, earlier this year, and then she died in May. So that five months.

ELIZABETH:

The commission has heard from families but also from nurses and people who’ve worked in the sector. What have some of their submissions been?

KATE:

I was really interested in this witness testimony by Dr Jennifer Abbey. She's a retired registered nurse. She spoke about working in aged care over the last 30 years or so and said that she really observed it go from something like what she called a cottage industry, run by retired ex nurses, for example, to a huge business and the impact that it had. So she said, you know, she'd left her job because of the toll it had taken on her. She said it becomes sad and quite morbid. And that was a quote from her to go to work there. She said she was actively discouraged from forming bonds with residents. And she described frequently making complaints to management because of residents, in quotes “not being treated with dignity and respect.”

According to her, you know, those complaints didn't really go anywhere. They weren't heard and she said she saw rough handling, she saw staff telling residents to wait because they were doing something else that obviously was not as important. And that many times they just simply wouldn't give residents the time of day like they didn't matter. And I think that that resonated so much with me. I like that she really points out that the corporatization of aged care in Australia has played a significant role in this problem.

ELIZABETH:

Why do you think that the commission was established?

KATE:

Look, it's hard to say. I mean I think it's almost an unavoidable issue in the sense that even though these stories that many of us have heard are so shocking, they’re also believable. Given our aging population and just how many more people over the age of 65 we’re going to have in a relatively short period of time, I think it's coming to a head. I think it's unavoidable that something needs to be addressed. But yeah, look, I suppose it's surprising to see that the Coalition endorse or lead it, given particularly the Howard Government's push to really marketise aged care and just propagating this belief that consumer directed care is meant to be enabling choice of better options for elderly people. But, you know, forgetting that that relies on them having the means financially, emotionally, psychologically, having the family support in place to advocate for you...

ELIZABETH:

At a time when, say, someone might be the most vulnerable they’ve ever been in their lives.

KATE:

Correct. There's just so many barriers there for people to actually access the care that their loved ones need. And I don't think the system's working in the way that it's been sold.

Archival tape — Unidentified Man 1:

“Many have addressed particular aspects of the aged care system…”

ELIZABETH:

What is on the key areas that the commission is looking into now?

Archival tape — Unidentified Man 1:

“...Where the reviews have been limited in their scope, they have not been able to address the bigger picture. Too often, the reforms made to aged care have been addressing a problem in isolation, rather than the system as a whole.”

KATE:

So most recently, I wrote about some of the impacts on carers, particularly people looking after families in their own home. What supports are in place for carers like access to home care packages or whether the NDIS has provided any kind of support, which at the moment, the answer seems to be not particularly, that carers can't really access the support that they need, it's much more focused on the person who needs care. There was a little bit in the Cairns hearing about alternative models, but I have also had the commissioners at times say they looking for tweaks to existing models to improve the situation that we have currently.

ELIZABETH:

And you are of the opinion that that's just not going to go far enough?

KATE:

No. I think if you look at the history of the way aged care in Australia has really shifted towards not only being deregulated but its marketisation, this consumer-directed care model. And, you know, the people working in these places are paid terribly as well. Until that profession is respected and paid properly then no. More regulation, great, but perhaps we need an overhaul of that whole model, in my opinion.

ELIZABETH:

I know an interim report is due in October and then the final report is due at the end of April next year. What is it that you hope to see that might come out in the recommendations?

KATE:

I probably think that we haven't heard enough about best practice worldwide. What I find is these people end up so lacking in purpose. I just think, unless we re-engage with these people as human beings who need a sense of purpose I don't see how, yes, we could add one more staff, how does that change the problem of these people effectively waiting to die, rather than being engaged as citizens with worth and had very meaningful lives up until this point.

ELIZABETH:

Kate, thank you so much.

KATE:

No worries, thank you.

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[Theme music]

ELIZABETH:

Elsewhere in the news:

The Reserve Bank of New Zealand stunned economists yesterday when it moved to cut the country's official cash rate by half a per cent. The large rate cut had a knock on effect for the Australian dollar, which fell to 66.77 US cents, the lowest level since early 2009 during the depths of the global financial crisis. The New Zealand dollar fell even more sharply.

And in Canberra, a former public servant has lost a landmark free speech case in the High Court after it found that tweets she'd written which were critical of the government had breached its employee code of conduct. The High Court unanimously ruled that the code had not restricted her right to freedom of political communication and was in keeping with the need to maintain an apolitical public service. The relevant union said that the decision could affect more than 2 million people working across all levels of government and that the restrictions on social media use by public servants had in recent years become, quote, "even more draconian."

This is 7am. I’m Elizabeth Kulas. See you Friday.

[Theme ends]

The royal commission into aged care has heard evidence of extreme deprivation and mistreatment. It has also inquired into the toll taken on people caring for the elderly. Kate O’Halloran on looking after her grandmother, and what happened when she complained about her treatment.

Guest: Journalist and research fellow at Victoria University Kate O’Halloran.

Background reading:

Carers’ evidence on aged care in The Saturday Paper
The Saturday Paper
The Monthly

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7am is hosted by Elizabeth Kulas. The show is produced by Emile Klein, Ruby Schwartz and Atticus Bastow. Our editor is Erik Jensen. Our theme music is by Ned Beckley and Josh Hogan of Envelope Audio.

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53: A question of dignity