Australian Ageing Agenda March-April 2024 Cover Story

At the centre of decision-making

OPAN helps seniors retain choice and control

Preserving choice, securing control

OPAN continues to campaign for older people to be at the centre of their decision-making.

Rosemary Seam moved into an aged care home near Kempsey in the mid-north region of New South Wales four years ago. While residential aged care has been a largely positive experience for Seam, she tells Australian Ageing Agenda she has encountered issues around choice and control.

“When I first came in here, any question regarding healthcare, or just general living, was referred through my family. So I asked management to send emails about me, to me,” she says.

That included financial correspondence, such as Seam’s monthly account. “My family doesn’t pay it. I pay it myself.”

When Seam pointed that out to the site’s supervisors, they heard – and responded –immediately. “It wasn’t a problem,” she says. “Now everything comes through me.”

Well, nearly everything.

“We just had an email about a flu vaccination and the request for permission went through my family,” Seam says. “But I made sure I got a copy of the form and filled it out myself.”

By responding positively to Seam’s request for control of her own affairs, management at the aged care home have shown they respect her autonomy and right to choose and make her own decisions.

“We all have a duty to deliver supported decisionmaking.”

OPAN’s 2023 Presenting Issues Report identified a lack of choice and control as one of the top issues facing older people in aged care settings.

In this area, concerns often involved aged care staff making decisions on behalf of an older person, says Craig Gear – chief executive officer of the Older Persons Advocacy Network (OPAN).

“Even when a person’s cognition might be impacted, or they might be older – they can still make decisions about their lives. And we need to give people the tools to help them keep involved in making those decisions.”

This is where supported decision-making comes in. “Supported decision-making is about keeping the older person at the centre of their decisions,” says Gear.

“Like a personal care worker talking to a person about when they would like to have their shower rather than coming in and saying, ‘Come on, time to get up. You need to have a shower.’”

In the same vein, the report found aged care workers also prioritise the decisions of family members over the views and preferences of the older person.

“The son might be saying, ‘Oh, Mum can’t have that extra scoop of ice cream – she’s a diabetic.’ And the staff are deferring to the son rather than respecting the resident’s wishes.”

Aged care resident Rosemary Seam (right) with her support person Elaine Gosling

Craig Gear

While those scenarios may concern the small things in life, Gear says they represent something far more fundamental. “This is about human rights. This is about the right of the older person to continue to make decisions about their lives.”

Natalie Clements is a member of OPAN’s National Older Persons Reference Group – which aims to ensure older people are actively involved in discussions that affect them.

She highlights that everyone engages in some form of supported decision-making. “When we go to an accountant to give us tax advice or we might go and see a lawyer to ask for legal advice.”

Like Gear, she says retaining choice and control is integral to a person’s independence.

“It’s their autonomy, their dignity and also, crucially, their right to exercise their legal capacity and to have that recognised by other people,” Clements tells AAA.

Relatives of an older person often think they have their best interests at heart, says Clements. “They typically have that paternalistic approach. And, usually, it’s to do with safety and risk.”

But risk-taking is a key principle of decisionmaking, Clements tells AAA. “It is a part of human dignity for us to be able to take risks and learn from taking those risks.”

Individuals also have the right to change their minds, adds Clements.

“Older people have the same rights as anyone else. They should always be presumed to have capacity, even if they might present with dementia symptoms. It’s key to their human rights unless it’s proven otherwise.”

Others assuming they know what’s best for an older person has become “institutionalised practice”, says Clements. “Where people think, ‘I know what’s good for this person.’ When, in actual fact, they might not know at all,” she says. “Doing that takes away choice and control, which leads to abuse of older people.”

Likewise substitute decision-making – made by the likes of a power of attorney, a guardian or a public trustee – takes away control of the individual, says Clements.

“Because people are making a decision based on best interest when it should be the will and preferences of the particular person. It’s about ascertaining what this person wants; what they would like to do in terms of minor decisions or major decisions.”

Major decisions such as maintaining the right to sexual intimacy.

“Someone may have cognitive impairment or dementia but still want to be connected to their partner,” says Gear. “By having these conversations and talking about the decisions beforehand, you get much more clarity of the wishes and preferences of the person.”

In collaboration with fellow advocacy organisations Celebrate Ageing and the Older Women’s Network, OPAN has developed a Charter of Sexual Rights and Responsibilities.

“At the heart of that is people talking and giving direction to what their wishes and preferences are and how they want their decisions to be made,” says Gear. “That will prevent abuse because we know what someone’s wishes and preferences are.”

OPAN has long campaigned to government on the need to enshrine the concept of supported

“It’s about ascertaining what this person wants.”

Training for aged care professionals

OPAN’s free education and information sessions support providers to meet their obligations under the Charter of Aged Care Rights and Aged Care Quality Standards.

W: opan.org.au/education/ training-for-aged-careprofessionals

decision-making into the new Aged Care Act.

“So that everyone understands that they need to engage and understand what the wishes and preferences of the older person are, and how they want their care delivered,” says Gear.

“So it’s actually family and friends upholding the rights of older people in partnership with the older person, in partnership with the aged care provider. It’s about saying, ‘We’re all part of this, we all have a duty to deliver supported decision-making.’”

Clements tells AAA, in its current form, the new Aged Care Act just adds another layer of substitute decision-making.

“That’s concerning, because under our human rights obligations, Australia needs to move away from substitute decision-making towards supported decision-making. We would like to see supported decision-making included in the Act as a requirement for government to provide support, and for providers to provide support as well.”

As well as lobbying parliament, OPAN has been educating the sector through face-to-face training sessions. “We work with providers to help them understand what supported decisionmaking is and how it can help them identify and respond to elder abuse,” says Gear.

OPAN also hosts free e-learning modules. “So that aged care workers can make sure that the rights of the older people they care for are being upheld, that they’re still maintaining their autonomy and engaging in the decisions that affect their lives.”

Gear adds: “That not only puts older people at the centre of their care, but it also creates a much more engaged and satisfied workforce and much more engaged clients as well.”

In the end, says Gear, every Australian needs to be made aware of the importance of supported decision-making.

“This is about educating all of us about how we can uphold the rights of older people and how to ensure supported decision-making becomes best practice. After all, we’ll all be older someday.” n