No dignity in aged care without control

Published in the Daily Telegraph 12 March 2021

Every one of us will likely one day need aged care. The final report of the Royal Commission into aged care uncovered a chronically underfunded system rife with neglect, and we all have a stake in the overhaul that must follow.

But while the Commissioners wrote at length about treating older Australians with ‘dignity’ and ‘respect’, their recommendations  lack a strong enough focus on something essential to both these principles: choice and control.

Our aged care system robs older Australians of their choices, from the simplest to the most profound.

It’s a system that is obligated to treat people with dignity and respect but doesn’t let them choose where they live or when they see their family. They can’t choose what time they wake up in the morning or what time they have breakfast, lunch and dinner. They can’t choose the flavour of their toothpaste or who sees them naked.

What Australian would call this dignified? Who would feel respected?

This benevolent paternalism is deeply ingrained in the culture and systems of aged care, along with a ‘take it or leave it’ mentality that gives all the power to providers.

Many aged care providers are trying to do the right thing, but one-third preside over such appalling conditions they should not be operating. The Royal Commission laid bare hundreds of harrowing stories of abuse and neglect inflicted on aged care recipients, by both for-profit and non-profit providers. It’s time to shift the balance of power.

If quality of life is the goal of our aged care system, then it needs to be on our terms. That means seeing older people as full partners in the delivery of their own care and allowing them to make the decisions that work for them: who bathes them, when they get up, what they eat, who they see and when.

How can we make sure aged care providers give our parents, grandparents, and our future selves, control over their own care? We can start by enshrining our right to self-determination in law, mandating open disclosure, feedback and consumer involvement in decision-making processes. We must shift the provider culture of ‘complaints’ and ‘risk aversion’ to one of customer service, partnership and co-design.

Aged care providers need to change or get out. But the government also needs to start offering genuine choice and control. One-fifth of people living in residential aged care are forced to be there because the government cap on home care packages means they can’t live at home. 10,000 Australians die on the waiting list every year, while another 19,000 are forced prematurely into residential care because there isn’t enough care at home.

When this happens, older people don’t just lose their home. They lose a hundred small, daily choices that the rest of us take for granted.

It’s the government’s moral duty to make sure we can stay safe at home, in control of our own lives, for as long as possible. And that if we do need residential care, we have control over what happens.

The principles and rights in the proposed aged care legislation are encouraging, but they are meaningless unless put into practice. Our new aged care system must tip the scales towards the individual and give older people genuine self-determination. That means control over the culture, choice of care and service delivery, and full transparency from providers.

Protecting the dignity of older Australians is not just a moral imperative. We should build an aged care system that we will one day be content to live in.

None of us can have dignity without power.