Call for law to place older people at centre of decisions

The Older Person’s Advocacy Network is calling for supported decision-making to be embedded into aged care.

The Older Persons Advocacy Network is calling for supported decision-making to be embedded into aged care and enshrined in Australian law.  

In a position paper released this week, OPAN voiced its support for the right for older people to make decisions about the care and services they receive and recognising this right under a legislative framework.

Craig Gear

OPAN CEO Craig Gear told Australian Ageing Agenda that, while there has been much talk in Australia about supported decision-making over the years, it has never been formally realised.

“In Australia, while we’ve had some research done in the past around supported decision-making – there was also a recommendation of the [aged care] royal commission to embed supported decision-making – we actually haven’t rolled it out as a framework.”

Supported decision-making aims to assist people to stay involved in the decision-making process about their healthcare and is an alternative model to using a substitute decision-maker.

Legally appointed, a substitute decision-maker can be a:

  • spouse or de facto spouse
  • unpaid carer
  • nearest relative or friend who has a close personal relationship with the person.

“While OPAN agrees with the urgent need to cease the current use of substitute decision-makers in Australia to reduce the abuse of older people, we recognise that substitute-decision making may be required in rare and exceptional cases have been exhausted or are impossible – [for example,] if the person is in a coma,” say the position paper’s authors.

However, the advocacy network believes, “supported decision-making should be the first and preferred option, with substitute decision-making seen as a last resort.”

A fundamental human right

Supported decision-making is fundamental to older people’s human rights, Mr Gear told AAA. “It’s going to embed dignity and respect because if we have supported decision-making we will then be looking at how we make sure that the older person is at the centre of all decisions – that’s even when there might be some issues with cognitive decline.”

Recognising that decision-making is “complex, fluctuating and difficult to assess,” the paper’s authors note the ability to make decisions depends on many factors, including:

  • the quality of information provided and the suitability of the format it is provided in
  • available supports to make a decision
  • the person’s confidence and knowledge relating to the topic to be decided
  • the person’s communication modes and preferred language
  • culture differences in expressions and values.

Legislative framework needed

The paper’s authors are calling for a national policy and legislative framework for supported decision-making to be codesigned with people with a range of disabilities, diverse groups, cultural backgrounds, and ages.

“The codesigned national policy and legislated framework should be embedded in federal, state and territory laws, policies and legal frameworks across all care and support sectors (including aged care) and spanning all types of supporters including family, friends, advocates, support workers and legally appointed supporters,” reads the 20-page document.

Mr Gear told AAA he would like supported decision-making to be included in the new Aged Care Act currently being reviewed by the federal government. “I think supported decision-making is something that should be considered with that,” he said.

Ageism at core of the issue

Effective guidelines and safeguards should be included in the national policy and legislative framework, says OPAN, and a specified body should be established with powers to enforce charges and sanctions for providers and individuals who do not uphold the decision-making principles.

Once the principles are established, the position paper’s authors are calling for the Aged Care Quality and Safety Commission to conduct audits ensuring providers produce evidence of:

  • how their workers implement supported decision-making principles in day-to-day practice
  • how they provide access to independent supporters.

As well, OPAN would like the federal government to provide funding for:

  • professional advocates as potential supporters in aged care decision-making processes
  • a national public awareness campaign
  • educational and training programs for those working with older people, including aged care staff.

Ubiquitous ageism – in society and therefore internalised by many older people themselves – is core to the issue of supported decision-making, conclude the paper’s authors. “This means older people are in a perceived, and actual, power imbalance with younger family members, service providers and others as they feel and are treated as less than in a multitude of ways.”

They add: “This power imbalance due to ageism is further exacerbated by people abusing their positions of power, for example as a substitute decision-maker, to exert undue influence.” 

The purpose of OPAN’s position paper, said Mr Craig, is to continue the conversation around supported decision-making and to “seize the opportunity with the aged care reforms so that this gets embedded in those reforms as well.”

However, Mr Craig told AAA “there are a number of building blocks we need to get in place for this to get put into practice.”

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Tags: craig gear, opan, supported decision-making,

3 thoughts on “Call for law to place older people at centre of decisions

  1. Shouldn’t the EPOA be the supported decision maker? After all this is what the person appointing the EPOA requested. They CHOSE the EPOA. It is their decision.

  2. This is a fantastic step forward and needs to happen, those of us who have worked in the aged care management arena for some time are often swamped with family and friends trying to make decisions for wise older Australians who have lived a great long life, only to be treated like toddlers in their later years. It does need to be in the Act , and this will also ensure the Quality and Safety Commission Is held to account for ensuring the decision making is made by the elder, not the others., as too many times I seen the gutless wonders from Govt cave into the vocal non elder. It should be treated as elder abuse, the same as the financial elder abuse that is rife in this country.

  3. This highlights the need for a residents style committee. The new legislation mentions “Consumer Advisory Groups” but so far there is very little information on who, how, what and any constitutional issues. If this to be truly independent there needs to be arms length from local management. Hopefully we will see more information shortly, this would fit with “Consumer Based”

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