Jyl's journey to aged care: 'I feel like part of me is lost'

Aged Care Australia

When David Stephens' elderly mother Jyl fell in December, it seemed to be the start of a new family tradition.

"In 2015 she broke her hip just before Christmas and she spent two-and-a-half or three months in hospital and rehab, then she went home," Stephens says.

"Then last year, at exactly the same time, the week before Christmas, she fell again. This time she broke her upper thigh bone very badly."

As Stephens drove from Melbourne to where his mother lay in hospital on Phillip Island, neither realised that this time, Jyl would never be returning to her beloved home.

Aged care

David Stephens and (inset) with his mum, Jyl. Photo: Joe Armao

Time in a hospital and then a rehab facility gave way to a strong recommendation from medical staff that she was not up to managing a house and garden - it just wasn't safe. Full-time residential care was the only option, they said, and the decision had to be made now.

"I felt like we were being swept up in this vast machine," Stephens says.

"You're faced with this all-knowing system with deep layers of experience and knowledge ... And you're kind of saying, 'Well, you've seen it all before, but you don't know what's happening to this woman. Or to me. Or to our family'.

"There's a sense of powerlessness in that."

Jyl had no desire to go. The thought terrified her.

"Because I was moved around a lot in the war as a child in England, I worked harder toward having a home where my sons could come home to, and there'd always be a place for them," she said. "[A home] that I could call my own, and make my own."

To fund her care, Jyl would need to sell that home. It felt, she said, bigger than any of the other big life events she'd encountered: getting married, having children, migrating.

"I feel like part of me is lost."

Chandeliers and guilty feelings

Like many people, Stephens had no idea where to start in looking for a suitable nursing home for his mother, and he feared that finding a place would be difficult. So when he asked an aged care broker to help, he was astounded at the sales effort that confronted him.

"Immediately I started getting phone calls from five or six places, straight away, on that day.

"They were selling the places to me ... 'It's got this! It's got fresh food'. Well, you know, that would be a minimum, but they all emphasise the fresh food."

Jyl, with the help of sons David and Mark, finally resolved to go into a local nursing home. But she never got to experience it. Two days after our interview, she had a stroke and died.

It costs state governments $1000 to $1500 per day to keep someone in a hospital bed, while the Commonwealth spends on average just $173 per day for a nursing home place. Hospitals are therefore keen to move elderly people - sometimes known as "bed blockers" - out.

Families are often given just seven days to organise the move. And they are confronted by a vacuum of useful information.

University of Technology, Sydney, associate professor Richard Baldwin says homes outside the Victorian government system publish no information either on the "hard" indicators: "pressure sores, medication errors, weight loss, falls, infection rates, admissions to hospitals"; nor anything about "dignity, privacy, freedom to make own decision, freedom to choose your own leisure activities".

The federal government recently started publishing "consumer reports" based on what residents say about a home during accreditation visits, but the information is patchy.

Politicians and providers assert that Australia's standard of care in nursing homes is "world class" but, according to Baldwin, "we don't have the data to compare".

Asked if finding a suitable nursing home for a loved one was "a guessing game", the federal minister Ken Wyatt told Fairfax Media: "I accept that."

The people entering nursing homes are typically women in their 80s from a generation that did not express themselves forcefully. Half to two-thirds have some level of dementia or memory deficit. All are under stress. Complex decisions need to be made quickly, typically by middle-aged children with little information who are feeling guilty about the whole process.

They confront a highly proficient marketing push. About half of nursing homes in Australia are run for profit, and the proportion is growing. Four big companies are listed on the stock exchange. A few - about 5 per cent - are government run and the rest are not-for-profits whose practices (and financial results) often mimic the for-profit providers.

Not everyone makes money from aged care, but the most "efficient" players in both sectors take up to $25,000 in earnings before tax from each resident every year on profit margins of 20 per cent.

graphic

A family touring a new home may find crystal chandeliers, soaring marble foyers and grand pianos. These are aimed primarily at alleviating the misgivings of family members. Inside, they will be met by an admissions coordinator. According to aged care consultant Paul Dwyer, the first question to the family will be "Let's just run through mum's assets and income".

"Their role from management is to maximise every bed occupancy. They do it very politely; they paint a beautiful picture of the home. When they're on their walking tour, they greet the patients they pass in the corridor by name."

But what the residents will really care about in the years they have left - the number of staff per resident, their qualifications, the home's record of care, and its food and activities - are all obscured by commercial-in-confidence considerations and weak legislation.

Like any business, lifting profits means boosting revenue and cutting costs.

To help them, accounting firm Stewart Brown produces an annual financial performance survey. They call it a "benchmarking" report.

In Stewart Brown's survey, a "care result" does not refer to the amount or quality of care, but how much profit the home makes "per bed day". The "top 25 per cent" of homes in its survey - those the other homes should aspire to - made an average of $18,121 per bed, per year, clear of expenses. This survey is mostly based on a survey of "not-for-profit" providers.

The model homes with big earnings spend less on nurses and chefs, have higher occupancy rates, higher accommodation deposits, and are more likely to be in a city than their rivals, the figures show.

The "best" homes also spent just $6.08 per day on food for each resident.

Bon appetit

???"The smells of food," according to celebrity chef Maggie Beer, "are the last memories to go" with dementia patients, and eating is "absolutely a sensory experience".

She has spent the past two years conducting master classes with nursing home chefs to try to improve the quality of the food they serve the residents.

Beer will not directly criticise homes, saying, "you don't change a culture by bashing it". But you sense she is frustrated.

"I was told by one cook in a master class that they had a budget of $4.50 per day for three meals plus morning and afternoon tea. The good places are around the $9 to $11 mark," she tells Fairfax Media.

"That is ridiculously small; but the difference between that and the ones with budgets of $6.50 is exponential. I would love it to be $15 a day, but no one is seeing it's even possible."

Aged care

Chef Maggie Beer teaches chefs working in aged care.

"The people who are cooking in aged care are there because they love their 'oldies'," says Beer.

However, "it is very hard to please them if they have budgets that are so tight that they don't have latitude to give them beautiful food, because the person in charge, the leader, has no idea about the difference that beautiful food makes."

Beer wants homes to use fresh vegetables and generate "the smells of home cooking" in mini-kitchens dotted around nursing homes.

In many homes this is a pipedream. One elderly resident of a for-profit nursing home in Melbourne, speaking anonymously, told Fairfax Media she had spent $800,000 on a deposit to get her room, but bought most of her meals at the cafe.

"The food is a disgrace for human consumption. It's cold when served, the portions are small, the meat is tough. Most people push away their plates. It's inedible," the woman says.

Jasmine Pitts spent years working as a chef in a number of for-profit nursing homes. She found it depressing because, "the residents are paying the money and they're getting just crap".

"Cost-cutting is the main problem. Big time ??? "It was just ridiculous. For example, tea bags: the residents would complain saying can we get better tea bags? We just want to enjoy it. The company was. 'No, we can't afford them".

Dementia patients were treated the worst.

"When everyone else is getting fish and chips, the dementia patients might get a scoop of mashed potatoes with pureed vegetables [the chef] has kept from the day before, and whatever meat he's pulled out of the freezer ??? it just looks like dog food," Pitts says.

Aged care

Chef Jasmine Pitts: "Residents are paying the money and they're getting just crap." Photo: Eddie Jim

In her experience, many nursing home chefs were lazy - people who could not make it in commercial cooking, or who were burned out.

A whistleblower and catering expert says getting the lowest price on food meant "fresh produce is all bought in bulk. It's negotiated by head office so you don't get good quality and the chef has no say in it."

Residents complain, he says, but "you have to stick to the menu".

Unappetising food has serious consequences. A recent study by dietitian Dr Skye Marshall found, "on average, half of all residents in aged care are malnourished".

Gary Mason, who nursed his wife through dementia, visiting her three times every day, says that all 30 meals in the home were prepared at 4.45pm.

"But they weren't getting around to feeding some residents until 5.30. By then it was like eating clag. When they're getting a good meal, they enjoy it. You can tell. They show pleasure with something they understand."

Aged care

A meal in an aged care facility charging an $800,000 deposit.

Maggots in her mouth

Last year, Sydney physiotherapist Dorothy Gliksman decided she would like to spend some free days working in a for-profit nursing home (which she does not want to name).

"On my first day, I was told that there were 42 patients to see. I was allocated no more than 10 minutes with each," she said.

"I was told, 'Here's your patient, here's your list, and you have to see them all'. But by the time you go into the room ... and you go through the formalities, ask about any aches or pains ... the 10 minutes is well and truly over."

She felt unable to deliver any actual treatment, but it was made clear to Gliksman that she was required to document each visit on an iPad the home supplied.

"I realised this was all about numbers, payment and making it look as though treatment was taking place," she said.

Proper physiotherapy is expensive, so many nursing homes provide low-level help - mostly a nurse giving a massage. It's unproven whether this does any good, but it does allow the home to tick the "pain management box" on accreditation forms.

Gliksman lasted one day before quitting.

Dr Janet Wallace, a senior lecturer in oral health at the University of Newcastle, described a situation that was just as bad in her field.

"Residents might not get their teeth brushed for days or weeks," she said, due to time constraints on a limited number of staff.

"So they get dry mouth; they can't chew, swallow or speak properly, and they're in danger of getting oral thrush."

One patient in a Newcastle home run by the for-profit company Opal suffered and died at the extreme end of the oral health spectrum last year: she was found with maggots in her mouth. Her daughter Jayne was asked by the home's management not to tell anyone.

"I've seen a lot of small companies start off with the passion and wanting to make a difference, but money gets in the way, and inevitably it becomes the driver," says one former nursing home manager, speaking anonymously.

"And it's not like a hospital ??? in aged care, there's not that oversight. People expect the elderly to die."

graphic

Have assets, will pay

The financial calculations for aged care are diabolically complex.

One-tenth of the beds in each nursing home must be set aside for people who can't afford to pay, in which case the home takes 85 per cent of their pension.

But those with assets will pay. One of the nursing homes' first moves is to conduct a "financial health check" of their potential resident to see how much they can afford.

The government assesses both the resident's physical health (to judge the amount of government assistance they will get) and their financial health. They look for every asset, to work out if the new resident can afford to make a co-payment.

There a number of distinct types of payment. Everyone pays a basic daily fee for their care, which is set at 85 per cent of the pension (about $49 per day). For those who can afford it, the government charges an additional means-tested daily fee.

Those fees pay for a long list of items, from bed, linen, cleanliness, food tailored to the resident, activities, medication and therapy.

But they do not cover the accommodation cost - the rent. That is either another daily charge, or an up-front bond, known as a "Refundable Accommodation Deposit," set by the home, or a combination of the two. The nursing home takes the interest from the deposit and returns the principal when people leave or die.

Last year, the average deposit across Australia was $377,000 but the figure varies wildly. Many homes pay bonuses to the admissions coordinator to try to eke the highest deposit possible out of their potential new customer.

Most people plan to sell their house to pay it. And as with Jyl Stephens, it's a decision that can have a big impact on the psyche.

"When the family home is sold to fund the care, that's a signal that, if ever I get better, there is nowhere to go," says consultant Paul Dwyer. "That is a conscious and subconscious negative."

Providers set the price of accommodation deposits "based on the socioeconomics of an area," says Aged Care Minister Ken Wyatt.

Figures obtained under Freedom of Information show that Australia's most expensive nursing home, Lansdowne in Neutral Bay, Sydney, charges up to $2.7 million just to get through the door. A bed in a shared room costs $1.15 million.

Homes can also charge "additional service" fees for things such as Foxtel or wine at dinner.

Lansdowne has permission from the government to charge up to $77 per day in "additional" fees, in return for which customers are promised beautiful rooms, designer decor, hot breakfast, beer or wine with meals and even a personal assistant for letter writing.

"With prestige and comfort comparable to the world's top hotels, Lansdowne Gardens will cater to your loved one's lifestyle, clinical and care needs," its website boasts.

Dwyer says these additional payments seem attractive to families when they're signing the contract to put mum or dad into care, and they help with the guilt. For the home, though, they are "pure profit".

"I can't think of anyone who'd get value for those services," Dwyer says.

"I helped a couple last year who went into a shared room and got 'Club Services' [at a for-profit nursing home]. She was 96 and he was 92, and they were asked to pay $97 per day each for extra services they never used. It was a higher level of food, Foxtel and two papers a day; but they were in the same room watching the same TV and reading the same paper."

Ken Wyatt and the Aged Care Guild, which represents the nine largest for-profit nursing home companies, say profits are crucial if companies are going to invest in the new homes that will house the baby boomer generation.

"I think we've got to respect the fact that every aged care facility is, in a sense, a business entity," Wyatt says. "That's the harsh reality that we face. Governments provide legislative and regulatory frameworks around which they have to operate."

"An operator could choose lower returns, but that would not be sustainable," says Aged Care Guild chief executive Cameron O'Reilly on behalf of the for-profit homes, "And if the sector did that, there would be a massive shortage of beds in future and older people would end up in public hospital beds.

"For-profit providers are able to borrow bank debt, raise equity ... With such massive growth imperatives, we need funds, and the structure most available is private sector, for-profits."

Pat Sparrow, who speaks for not-for-profit nursing homes as head of lobby group Aged and Community Services Australia, says "surpluses are reinvested back into service delivery", and that "you need to have a surplus to invest in infrastructure".

Aged care

The care factor

The government's subsidy to nursing homes comes in the form of the Aged Care Funding Instrument, or ACFI. Critics say the ACFI payment should be devoted entirely towards care, but the money can be used for any purpose - care, infrastructure, or executive salaries and dividends for shareholders.

Next year the ACFI for nursing homes is budgeted to cost the federal government $12.4 billion.

The subsidy works by paying more as a resident gets sicker, up to $214 per day. Nursing homes employ "ACFI champions" or hire consulting firms to maximise their take.

"They're paid big money, and they walk around every day like a hound dog and the slightest change in your behaviour or cognition is documented, and the home gets to increase your money," says one industry whistleblower.

For two years, the nursing home that houses Kate Mannix's father collected $145 per day from the government because they said her father had Parkinson's disease, which attracts the highest level of funding. The problem was, he did not.

"I calculate that due to over two years of false claims, my father's aged care facility has ripped off the taxpayer by around $100,000, for my father alone," Mannix says, describing it, at best, as "medical sleight of hand".

The federal budget says the cost of ACFI should be growing at 3 per cent per year, but in recent years it's been growing at 5 per cent plus. The industry says it's because more people are arriving sicker. The government says it's because the homes have become so good at ramping up the subsidy.

"There had been incremental growth in funding ??? and then we found an incredible spike," Wyatt says.

This prompted a crackdown, then a partial backdown under heavy lobbying from the industry, and then an inquiry. The industry still complains that the changes take $2 billion over four years out of the sector.

Sparrow, the representative of not-for-profit homes, said the industry wanted more funding and more predictability, adding there was a "mismatch" between funding levels and community expectations: "Aged care is not funded to provide hospital level care," she said.

According to O'Reilly, the equation is simple: "The level of funding from the government determines the capacity of the provider to pay for care."

Any failures in care are, on this account, the fault of a lack of government funding.

But homes only spend about two-thirds of their ACFI funding on care. And when government inspectors compared the amount of subsidy with the actual condition of residents, they found that almost one-third of all ACFI claims reviewed were overpaid.

In Queensland and Tasmania, the overpayments reached 50 per cent.

"In our management meeting every month, the first line is about the share price and there's nothing about patient care," says one nursing home manager working for a listed, for-profit provider, speaking anonymously.

"Managers are told that have to keep costs down. That's to make sure shareholders get better profits."

iFrameResize({resizedCallback : function(messageData){}},'#pez_iframe');

This story Jyl's journey to aged care: 'I feel like part of me is lost' first appeared on The Sydney Morning Herald.