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Aged care: Locked down for life

Aged care: Locked down for life

By Bill O’Shea and Professor Joseph Ibrahim

Aged Persons Human Rights 

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A conversation on the state of aged care in Australia between Bill O’Shea and Professor Joseph Ibrahim.

Snapshot
  • Residential aged care has been in crisis for at least the past decade.
  • The COVID-19 pandemic has shone a spotlight on the crisis which at last has caught the public’s attention.
  • This conversation considers the problem and suggests a way forward.
  • One suggestion is that human rights law might be a way to achieve justice for residents of aged care facilities.

Many of us are shocked by the high death rate in federally-funded residential aged care facilities during the COVID-19 pandemic. Although major problems in aged care existed before the pandemic, they have at last caught the public’s attention. I wanted to find some answers – and who better to ask than one of Australia’s leading authorities on aged care, Professor Joseph Ibrahim, head of the Health Law and Ageing Research Unit at Monash University. Professor Ibrahim has been prominent in media commentary on the aged care catastrophe. He’s seen it close up through his clinical practice and in his ground-breaking research which examined premature deaths in aged care.

What led you to a career in aged care? 

You have the opportunity to do a wide range of things in aged care. You hear about the history of people’s lives and can make a big difference to their quality of life with small changes. Most people when they are older are looking to maintain their independence. You can help them find that but, unlike acute medicine, you often can’t cure their underlying disease. I went from a specialty in geriatric medicine to do my PhD in epidemiology and public health. That led me to the Victorian Institute of Forensic Medicine and the Coroners Court where I was assisting with the medico-legal death investigations. The interest I had was in the systems of care and why and how professionals, who are well-meaning people, make horrible mistakes. Why it is difficult to admit to those mistakes and then how should we rectify the system? 

With the current state of aged care, is it possible to make changes?

A lot of it has to do with timing and networking, rather than evidence and science. People put a great deal of faith in science, and I think you should, but people generally don’t respond to numbers or data. They respond to an individual’s story – someone or something with which they can empathise. So, for the majority of my career, I have been trying to change people’s behaviour and attitudes using the wrong mechanisms, which is science and evidence. It’s not what politicians, the media or the public respond to. 

I’ve seen profound changes through the Coroners Court when a coroner makes a recommendation with substantial policy or practice implications. People act on those because there’s an account detailing circumstances of a preventable death. The account is usually pretty awful yet most people are able to see something of themselves in those cases. This prompts them to follow that recommendation. An academic paper doesn’t generate anywhere near the same level of social mobilisation. 

How do you achieve change when so much of aged care is privatised and the operators have a conflict of interest between returns to shareholders and care for the residents? 

I think that placing the onus on private providers to change the system is wrong. Private providers are in the aged care business because it’s a business. They don’t get into aged care because they are altruistic souls – that’s like expecting the banking sector to help us address poverty. And what fires up private providers is pretty clear. You’ve either got to give them more money to make them behave in a particular way or place regulations on them which are enforceable. But asking the private sector to reform aged care is not going to work, it’s not the right mechanism. They’re not there to fix aged care, they’re there to make a profit just like every other private enterprise in society.

Do you think public money they receive should be tied to actual expenditure? 

Absolutely. We should know where the money goes to a forensic level of detail because it’s billions of dollars – it’s taxpayers’ money and we should know whether we’re getting value for money. One way to determine value for money is to ask, “Are we getting the desired outcomes?” At the moment, we are stuck at, “Where did you spend the money and why?” 

I think what might change aged care is having an accounting system where a resident knows how much the provider has been paid by the government for their care and they get a personalised report on how much money was actually spent. I think residents then become informed and activated. They see what their provider received and what was spent. And if the difference is unreasonable the provider needs to be accountable to the resident.

During the pandemic there has been a higher number of COVID-19 infections and deaths in commonwealth funded aged care compared to state-funded aged care. Do you think conditions imposed by the funder can affect outcomes?

I do. Research from the US shows that homes that are rated as high quality did better. They have a star rating system. Five-star homes are like five-star hotels and have had fewer outbreaks of COVID-19 than those with one or two-star ratings. 

In Australia, we don’t have that star rating system, but we’ve got different types of providers. The public sector homes are owned by state governments, predominantly in Victoria. They have to adhere to state as well as federal legislation, so they have staff ratios and more nurses. They have a higher staffing profile with more clinically qualified staff. They also have a relationship with a local public hospital. They may be more regionally and rurally located and may be slightly smaller in size. These are all factors that would contribute to a lower outbreak of COVID-19.

Should all aged care providers be ‘not for profit’?

I think “not for profit” is misleading. Every operator or organisation is there to make sure the books are in the black. And it comes down to “what do you do with the money?” With a private provider you know profit goes to the owners. If a not for profit makes money from aged care, they may send it to another area of need within their organisation. The Aged Care Act 1997 (Cth) was a massive step in the wrong direction into a free market. A free market cannot and does not work when you have human services being delivered to highly vulnerable populations.

Why isn’t it just as simple as saying that all commonwealth-funded aged care providers should adhere to the same requirements as state-run aged care, including the same award requirements? 

People argue that minimum standards exist through accreditation. So, everyone has to adhere to the same standard. 

But there’s no nurse-resident ratio in those accreditation standards.

It goes back to how do you know something is working well. Traditionally, you look at quality of care using three steps – structure, process and outcome. What we are aiming to achieve is the same outcome or end-result. Setting a standard for accreditation is really a structural measure: you know everyone’s got that, it is the same as stipulating staffing levels.

You might have the same number of staff and they may have the same qualifications, but their aptitude, experience, motivation and teamwork might vary enormously. So, having the same number of staff doesn’t always achieve the same outcome. You only have to look at any sporting league – they all have the same number of players on the team, but you get vastly different outcomes depending on how that team is managed.

The other issue in aged care is staff salaries. If you are going to make a profit you need a highly efficient workforce. Simply stating the minimum number of staff is not enough. You also need to consider the population you are looking after because the people who live in aged care homes have varying levels of care needs. Facilities where many residents have high care needs will need a different staffing profile than those where most residents’ needs are for a moderate or low level of care.

Is this where a star rating system would help? Could they be rated higher on the basis that they exceed the minimum staffing level?

Star rating only helps when you have a truly functioning free market model. That is, where a potential resident has and can enact choice. The fact is an older person can’t really choose in aged care. Choice is an illusion. Aged care is something you access when you have to, not when you want to. You typically access it when there’s a crisis in your life, such as developing a profoundly life-altering illness such as a stroke. You’ve been hospitalised and you are struggling to cope with your illness, let alone with making major life decisions. 

You have done a lot of work on violence in aged care. Is that still a factor in aged care in Australia?

Yes, it is. The reason we examined that subject was that the only records we had access to were coronial records. You cannot easily access records from individual aged care homes. You also cannot access the records from the Commonwealth Department of Health, which is where some of this data is held. There have been no concerted federal initiatives to address sexual assaults or suicide in aged care. There is some consideration being given on how to manage very complex cases of people with dementia who have major behavioural issues. This remains a massive challenge in terms of the consequences and repercussions for the person with dementia, their family, other residents, staff and society.

What’s the role of the Aged Care Quality and Safety Commission?

The Commission is now a consolidation of three previous functions. It came about because of the Oakden aged care scandal that showed up regulatory failures and the confusion between different regulatory functions. The thought was if you could consolidate it, that would be better. It’s still relatively early to make a definitive judgment. It’s not really a new body but a merger of previous bodies, so I don’t believe the philosophy and operations have changed substantially enough to reassure us that they are going to perform an order of magnitude better than what we had before.

Do you think aged care providers have any fear of the regulator?

I don’t think there is any fear from the senior executives because their business model is not really affected. There is a certain level of fear from the mid-level managers who have to address and respond to things in a timely fashion. They are caught in a sandwich between pressure from their board or senior managers and pressure from the Commission. I don’t think the providers lose much sleep over threats from the Commission. They are often substantially bigger operators than the Commission.

Some groups providing aged care are considered too big to fail. There’s a concern about what will happen if a facility is closed down. You create a bigger problem than you’re trying to rectify, so remediation is always the preferred option. If you are in a free market, then remediation isn’t a free market principle. In a free market, you either live or die based on your service. So, we have a theoretical free market for the resident, but we don’t actually have a free market functioning for the provider in terms of how the regulator works. If the provider fails, it’s not left to fail. That’s created the system and the shocking things that we’ve seen, particularly over the past months during the pandemic.

My experience with the Commission has been that it wants to see process improvements. So, if a provider can convince the Commission it has improved, then the Commission won’t take any action. 

Yes, but we need to appreciate that this is not unique to aged care in Australia. It’s the approach that’s taken in most human services around the world in terms of what is called “light touch regulation – I am here to help you because we are all in this together, trying to do good for a vulnerable person”. We don’t have the hard edge. If you look at other areas of regulation historically, such as occupational health and safety and road trauma, they were light touch regulation in the past and we found that didn’t work. Now, there are substantial penalties associated with unsafe systems of work or dangerous driving. It doesn’t matter how well a law is written. What matters is whether the law is enforced. A good law must be enforced well. Enforcement must have consequences that mean you are going to change your behaviour, rather than simply pay your way out of trouble. 

Do you think there’s an insurance-led, risk-averse culture in aged care that prevents many aged care residents having experiences that are more enjoyable than those totally dominated by risk?

I don’t think it is insurance-led so much as paternalism and concerns about clinical duty of care by health professionals. It may turn out to be due to the insurers at the end of the day, but I think the biggest limitation at the moment is that professionals are so focused on their duty of care and making sure they adhere to what they understand it to be that they fail to understand that their duty of care incorporates respecting people’s human rights. So, doctors and nurses have been very selective in looking at duty of care from the point of view of: “Am I doing the best job for you?” rather than “Am I acting in your interests?” and your interests might compete with what I consider are my good decisions.

Section 8(1)(a) of the Guardianship and Administration Act 2019 (Vic) emphasises that guardians must exercise their decision-making power by reference to the will and preferences of the person. The guardian is required to ask, “What would this person want if I was in their shoes?” Should that principle apply to aged care?

I think it should. Understanding that principle requires a different workforce and a better trained workforce in those areas. At the moment, we don’t have specific training for aged care nurses – they are usually nurses who have an interest in older people but are not formally trained in gerontic care. Many of the geriatric medical specialists are understandably anchored in a medical model of care and decision-making. That limits our ability to address the important non-medical issues which often determine a person’s quality of life.

Many people were fretting about being locked down due to the pandemic, but residents in aged care are permanently locked down – in most cases, for the rest of their lives. Isn’t that a denial of the right to freedom of movement for many residents?

We have tried to prosecute that argument. It’s met with a mixture of ridicule and amusement and results in lively debates about what should be done. Families at all strata of society don’t want their loved ones with dementia leaving a facility at will. People who are cognitively intact and are happy to stay at home don’t see it as an issue to be able to come and go because they don’t want to come and go. We really need some pro bono legal help to test in the courts some of the breaches of the human rights of older people. That’s an avenue we haven’t tried. It’s a challenge I hope the legal profession will take up to support us in effecting change in aged care.

What would you say is the ideal model for the provision of aged care in Australia? 

I think we need far more home-based care and we need smaller residential units that typically house six to 12 people in a traditional home-like environment. The days of large, industrial size facilities should be in the past. With the private providers, the buildings have become much bigger. You can now have aged care homes catering for from 30 to more than 120 residents. Economies of scale increase profit margins. I don’t think we can work out what we want the aged care system to provide until we work out what we, as a society, want to do for vulnerable populations who have needs. At the moment, we are warehousing older people – out of sight, out of mind.

I think it’s hard to judge the true need for residential accommodation when there’s 100,000 people waiting for a home package and they are referred directly into the residential aged care market because they can’t stay at home any longer. So, residential aged care grows artificially. And if we solve the problem of home-based care, how much residential aged care do we need? What would that look like? I think it needs to be far more niche, far more boutique and cater for people who are like-minded in “share houses”. What we have done to date is fix the system within existing boundaries rather than starting with a blank page – deciding how we want to live and designing the accommodation, and only then looking at how we get the people, the money and the regulations to operate it. 

Do you think the Royal Commission into Aged Care Quality and Safety will help advance that thinking?

I think it has already helped because it has brought to the fore a lot of the issues in aged care and started a conversation. I think the lack of impact, compared to the banking Royal Commission, has been a demonstration of how disconnected the community is from aged care. The stories don’t last very long. It shows people are worried about money but not about getting older. They can see themselves as rich or poor, but no one ever sees themselves as old and needing help. It’s disappointing the Royal Commission hasn’t explored further the contributing factors to the failures in aged care. For example, doctors don’t visit aged care facilities very often, there’s not much training for doctors who practise in residential aged care and the Australian Health Practitioner Regulation Agency hasn’t regulated the doctors’ use of anti-psychotic drugs. 

The question is, will voters hold governments to account to deliver on what the Royal Commission recommends? I am hoping the Royal Commission will be adventurous and not just try to fix the current system. 

The only way to fix aged care is to fix society. It’s not aged care that’s broken. Aged care reflects what we value, what we fund, how we regulate and how much interest we show. The solutions for aged care sit outside of the sector. So, if you want more doctors and nurses you need more universities training those people. If you want more staff, you need more money to pay them. All the things required to fix aged care require people outside aged care to do what they need to do. 

The final report of the Royal Commission into Aged Care Quality and Safety is expected this month. ■


Bill O’Shea AM is chair of the LIV Elder Law Committee and a former LIV president. Professor Joseph Ibrahim is the head of the Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University. 

The author thanks LIV Disability, Elder and Health Law Section paralegal Alexander Laurence for his assistance in editing the transcript.


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