Mum and dad deserve better than industrialised aged care

The pandemic highlights fundamental flaws with modern nursing homes that prioritise safety over choice.

Giuseppe, 90, and Tina, 95, celebrate their 70th wedding anniversary separated by glass at a Sydney aged-care home. Picture: Tait Schmaal

“We will all likely come to this place where we have a hard time living alone and need services or need to be even in a nursing home. And the striking thing is that nursing homes look more and more like hospitals.

“They are built around a nursing station, the rules are all around safety. And safety is assumed to be the most important thing that you would want for your ageing ­parent.”

Those words are from Atul Gawande, an American doctor whose book, Being Mortal, became mandatory reading for old people and their children after its publication in 2014.

Gawande, who was to speak at the Sydney Opera House the following year, wrote forcefully about how the Western world’s obsessions with keeping the aged safe had helped destroy choice for so many older citizens. His comments are apposite as the world tries to stop COVID-19 killing its old people in residential care.

Gawande says home is “ultimately a place where you get to make the choices, where you get to make the choices about the risks you want to take”.

In contrast, entering an aged facil­ity means ceding some of those choices to the group — even if it is supposed to be your new home. That lack of choice has been magnified during COVID-19.

Few would argue in principle against restrictions on residents and their visitors, but is the cost of physical safety too high for people reaching the end of their life anyway? Do we want our parents spending their final months isol­ated in a care home?

Health researcher Hal Swerissen says the disastrous death toll in American and European facilities shows “this is not a trivial ­exercise”.

Even if some residents think it’s worth taking the risk, Swerissen says, “It’s not a fun disease, COVID-19. I am not sure I would be wishing that on people.”

But Swerissen, who is a visiting fellow at the Grattan Institute in Melbourne, says the bigger problem is how we care for old people.

“The issue really is: is residential care, and the way we have framed it, a great model for the ­future of older people in our ­society? The answer to that increasingly is, maybe not.”

He wants us to scale back to smaller facilities that are more flexible, more socially focused and integrated with the community, saying: “Those are the models you would be looking at rather than the warehousing model where you build 150 beds and run it like a mini hospital. (But) you need to create incentives for that to happen. It’s a whole redesign of the system.

For now, peak bodies and providers are working with health authorities to maintain general protocols to protect residents. After a shaky start, when many ­facilities imposed their own rules, the sector has developed uniform measures such as the Visitor Access Code. This has been in place since early last month, sets out the duration and number of visits each day, and is under regular review, with hopes of relaxing restrictions further in the next few weeks.

Aged and Community Services Australia chief executive Patricia Sparrow says it has been extremely difficult getting the balance right. “We are sort of on the frontline, we are at risk as the restrictions are eased,” she says. “We know we have to manage it till we get a ­vaccine, and we know that if (COVID-19) gets in, it’s not a good outcome.”

She says there are mixed views among families about the restrictions and the extended period of the lockdown makes it more difficult: “What does it look like if there’s no vaccine in a year?”

However, another representative group, Leading Age Services Australia, released a survey early last month showing 90 per cent of family and friends and 82 per cent of residents agreed or strongly agreed with the protections.

An Essential Research survey found 69 per cent of the public agreed with restrictions on visits to aged homes.

Vasi Naganathan, a specialist in geriatric medicine at the University of Sydney, says it’s a mistake to assume a homogenous view among older people: some are happy with isolation while others suffer physically and emotionally from loss of visits from families.

But given 40 per cent of those with COVID-19 in care homes die, it’s logical to try to protect residents, he says. Older people are not more likely to get the virus but are more likely to become very ill and more likely to die, and this is certainly the case for those in residential care.

Naganathan says Australia has done well in working through the issues but the public health implications make choice complex.

“In almost every other medical situation, it’s what does that person want when risks are explained. That’s still the priority, but we all understand the added thing is, what is good from a public health point of view?”

The question, for example, of whether someone with COVID-19 could be forced to go to hospital if they refused to leave an aged-care facility has not been put to the test, he says.

Even before infection, choice is problematic. As Swerissen says: “If you are at home you can make individual choices. The difficulty in a residential care facility is that once you do that you also affect all the other residents, so you have a general consequence of behaviour.”

He believes we need up to four months — basically the winter — to check for breakouts and clusters before significantly relaxing ­restrictions.

Yet relax we must, because a vaccine is unlikely before the first quarter of next year, he says, and maintenance of present restrictions until then would be difficult.

Back on the bigger policy issue, Swerissen says our “highly privatised” sector means we have “ended up with a model that is about trying to aggregate”.

He says: “What makes money is to aggregate to a larger-scale organisation with more beds and you run it like you do a business, in that scale makes a difference in your profit margins. The models that we actually want are much smaller-scale models, much more closely integrated with the community and where there are much more flexible arrangements and much more home-based care.”

That model is not financially ­viable under current arrangements, Swerissen says, “but if you really want to start thinking about older people’s lives you need a new approach.

“It’s not a tweaking exercise. It’s really a question of whether in the current environment there is the willingness to deal with this given the huge sets of issues (around COVID-19) that have emerged. It’s going to be difficult to get the policy space to get beyond the ­discussion about how to keep ­people safe.”

Instead he sees increased pressure on government for more money for home care as people opt to stay away from facilities where infection risk is high.

There’s a certain irony in quoting Gawande in this story, given his interviewer in 2015 was ABC broadcaster Norman Swan, who has argued for strict measures during the pandemic.

So what does Swan think about the aged-care issue?

“My view from the distance is that choice is the first thing to go,” he tells Inquirer.

“Facilities are risk-averse, as indeed are families. That’s clearly been successful in terms of saving lives as we’ve only had a handful of problems, distressing though these have been.

“However, I hear again and again about families with aged parents at home that they’re wanting to make decisions for their ­parents. My view is that if someone knows the risks and wants to hug their grandchild — assuming lockdown rules allow visiting — then why shouldn’t they?”