Aged care and demanding families

Families have higher expectations because of the fees they are paying

Aged Care Royal Commission
EXPECTING TOO MUCH? Experts have questioned whether families fully understand what happens as a person nears the end of life.

EXPECTING TOO MUCH? Experts have questioned whether families fully understand what happens as a person nears the end of life.


Do we expect too much from aged care? Why communication is key to ensuring services meet the needs of nursing home recipients.


DO WE expect too much from aged care? Are we in denial that our relatives are actually dying, and not going to get better?

While the Royal Commission into Aged Care Quality and Safety has heard many horror stories about inferior care and the system letting down vulnerable older Australians, the final day of the Cairns hearings was given a glimpse into what families expect from aged care and how they communicate with aged care workers.

Nursing practitioner Sandy Green told the hearing family behaviour had dramatically changed since the introduction of accommodation bonds in 1997.

"So they expect a service," she said. "So my mother needs a geriatrician or my mother needs a dietitian.

"I'm just finding families are getting angry. They're demanding services. They're demanding care. They're demanding treatment a lot quicker."

And fair enough, too, most people would say. But are our expectations of care and recovery off the mark?

Rather than presenting residents with a home-like environment, Ms Green said she saw aged care as a "subacute hospital - because family is driving this".

She said some families would not accept their loved one had multiple medical conditions and their condition was unstable.

"And if we say, 'I'm sorry, your mother or your father, they're dying' they don't want to accept that. They want us to get in outreach services.

"They want us to put everything in place so their parents can get better."

Consultant nursing gerontologist Drew Dwyer said families were often the biggest barrier to providing the best outcomes in care.

"It's a simple case in any home you go to ... that the families are extremely demanding and have a higher expectation for the fees and services they're paying but, unfortunately ... we need to understand that most facilities are not fit for the purpose," Dr Dwyer said.

He said families needed more education on the impacts of ageing so they can better understand and accept what is occurring as a relative reaches the end stages of life.

"Our responsibility as a team is to nurture that ... but it's not usually the case.

"It's a denial; it's a confrontation; it's 'You're not doing enough. You're not providing enough' - and it causes a bit of discourse."

Angela Raguz, general manager residential aged care with HammondCare, said she believed the relationship needed to begin for entry to aged care.

"Meeting the person and their significant others who are perhaps involved in the decision before entry into a facility and communicating effectively - not just then but throughout the whole time that a person is in care - develops that relationship," Ms Raguz said.

"And within that, you're setting up at the beginning what it is that you're able to do, what you're able to offer, how that person's care can be delivered within ... this service if and when they arrive."

Ms Raguz said she had not experienced an overwhelming level of unrealistic expectations.

"In fact, I haven't experienced people being in denial about the progression, and perhaps that's because I work in dementia-specific services. And there is a general understanding by people when they come in that dementia is a terminal illness."

Continuing on the importance of communication, Dr Jennifer Abbey said it was important aged care workers listened to residents, especially those with dementia.

"We mustn't ignore the voice of the resident when they're spitting food out. It's the last power a person with dementia has got. They're choking. They don't want this food. They want to spit it out. We go on feeding them.

"So we've got to listen to the voice of the resident as well as the voice of the family ... and everybody else.

"Family communication is difficult, but it can be improved by all the things that we've talked about - setting up a good relationship in the beginning and regular family conferences."

Dr Abbey acts as a voluntary consultant to PainChek, a phone app that uses facial recognition to detect pain. She has worked in various aged care roles since 1967.

The needs of family, informal and unpaid carers will be addressed in Mildura hearings from July 29-31.

The royal commission then heads to Brisbane from August 5-9. It will look at the regulation of aged care with a focus on quality and safety and how aspects of the current regulatory system operate.