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Complaints

Human Rights Don't Diminish With Age (2023)

Age Discrimination

Hon. Dr Kay Patterson AO

Age Discrimination Commissioner

Speech to Chris Barnard Nursing Agency (CBNA)

MACG Grand Cedar, Ashwood VIC, 3 May 2023

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Welcome everyone - I wish to acknowledge the Wurundjeri Woi Wurrung and Bunurong people as the traditional owners of the lands from which I speak and pay respect to their Elders, past, present and emerging.

I also want to acknowledge the Medical and Aged Care Group, in particular Grand Cedar for hosting us at this facility today.

As Age Discrimination Commissioner, I have made it my priority during my term to address three major manifestations of age discrimination— elder abuse in the community, older women’s risk of homelessness and age discrimination in the workplace.

While I hold deep concerns and a commitment about the issues in aged care it has not been a central focus of my role as Age Discrimination Commissioner.

This was because there is an Aged Care Quality and Safety Commission which is responsible for protecting and enhancing the safety, health and wellbeing of people receiving aged care services.

In addition, the Federal Government also funds the Older Person’s Advocacy Network which has responsibilities to advocate for older people in residential aged care and aged care in the home – I have a very good working relationship and frequently consult their CEO Craig Gear.

Having said that, my team and I kept a close eye on the Aged Care Royal Commission from a human rights perspective, especially in relation to the central human rights themes that have emerged concerning the delivery of person-centred care and issues around autonomy and independence.

I am also a member of the Council of Elders, which was established by the Australian Government to consult with senior Australians and provide advice about aged care reform and ageing generally.

Today I will be speaking to you on the topic of human rights and ageing, and what this means in practical terms for older people in aged care and for aged care managers and nurses like yourselves.

Ageism and aged care

I want to start by making some comments about ageism.

In 2021, the World Health Organization released the “Global Report on Ageism”. It contains one of the best definitions of ageism I have come across:

‘Ageism refers to the stereotypes (how we think), prejudice (how we feel) and discrimination (how we act) directed towards people on the basis of their age.” [i]

Ageism is an obstacle to achieving an aged care system which respects and supports human rights.

It can also result in older people feeling they cannot exercise their rights and that their concerns are not being acknowledged and addressed.

Ageism can be malevolent or benevolent. Families, health professionals and institutions like aged care facilities can overprotect and reduce an older person’s autonomy – sometimes to the point of malevolent ageism, which can lead to the ignoring of the wishes and autonomy of older people, and their abuse and neglect.

Individuals working in health and aged care services can reinforce and perpetuate ageism and discrimination based on age, often through unconscious bias.

The Royal Commission undertook research into ageism, which included a survey[ii] and qualitative research[iii] into the relationship between ageism and attitudes towards older people in aged care.

This research found prevalent negative descriptors of older people include a perception that they are:

  • vulnerable
  • frail
  • slow
  • close-minded
  • inflexible
  • lonely
  • scared
  • invisible

While many of the survey respondents had little exposure to older Australians and knew little about the aged care system, those who did interact with older people – either through family or community – predominantly described these interactions positively. 

Across all demographics and age groups surveyed, there was a clear preference expressed to remain living independently for as long as possible.

When ageist attitudes are reflected in behaviour, this becomes age discrimination. This may be demonstrated in:

  • the types of services available to older people
  • age-based assumptions about their preferences and capabilities
  • language used when interacting with or talking about them.

Ageism is therefore an insidious and pervasive factor in diminishing older peoples’ human rights that we need to be on the lookout for in all contexts, including in aged care.

A human rights approach to aged care

What does a human rights approach to aged care look like?

In my submission and subsequent appearance before the Aged Care Royal Commission – prior to COVID – I noted the importance of the need for the Royal Commission to look at aged care through a human rights lens.

To quote from my submission, “… we need much more than a 'tick-a-box' approach.” I suggested that this was vital "so that the care received by every Australian is not 'just good enough' but is 'more than good enough.” [iv]

It is a fundamental human right that people living in residential aged care be treated humanely, with dignity and with respect for their autonomy.

This means that the preferences and needs of older people really must be the driving force behind the provision of aged care.

I recently came across an amazing story of a 100-year-old who returned home after recouping from a back injury. They had been in residential aged care for two years. This is an older person exercising her choice and her right to live independently in her own home and being supported to do so whilst maintaining her health and autonomy.

This is a good example of an older person’s needs and preferences being put at the centre and the aged care system and services wrapping around to support this outcome.

The translation of a human rights-based approach into practice is helpfully informed by what’s known as the ‘PANEL principles’ – Participation, Accountability, Non-discrimination and equality, Empowerment, and Legality.

Participation in an aged care context would require care recipients to have free and meaningful participation in decisions affecting their rights and about their care. Information must also be accessible, and mechanisms put in place to enable participation.

For example, aged care assessors may witness a family member pressuring an older person to apply for residential care. In some instances, this could constitute elder abuse. Mechanisms or guidelines to enable assessors to see clients on their own may be required or may need to be strengthened in this regard.

I am also of the view that assessments used to determine an individual’s decision-making capacity need research and refining to ensure they can differentiate the circumstances and domains in which a person does or does-not have decision-making capacity. There should also be opportunities for reassessment of a person’s decision-making capacity.

Accountability in the provision of aged care services would require the development of appropriate policies, procedures and mechanisms to monitor how people’s rights are being affected and to provide remedy when things go wrong.

Horrific accounts of abuse and neglect have come to light through the Royal Commission into Aged Care Quality and Safety. The Commission estimated that there are approximately 50 residents per week experiencing sexual abuse and 30.8% of residents living in aged care facilities have experienced neglect.  This is wrong, and we must do everything we can to ensure such incidents do not happen again and perpetrators of these crimes are held to account.

Non-discrimination and equality. Research indicates a strong link between ageism and risks to older peoples’ physical and mental health, plus the quality of health care received.

To give one example, a person in residential aged care was assumed by aged care staff to have limited capacity or declining faculties when in fact her hearing was obstructed by impacted wax in her ears.

This shows how ageism and unconscious bias can seep into the behaviours of aged care workers and influence assumptions about residents’ preferences and capabilities. This highlights the importance of addressing ageism, such as through education for staff and fostering of intergenerational programs to counter ageist attitudes. 

Next is Empowerment. In the context of aged care, older persons should be provided with information about their rights and how they can exercise their rights, including through advocacy or communication supports as appropriate.

Finally, Legality requires recognition of rights as legally enforceable and grounded in domestic and international law. It will be important for stakeholders to participate in law reform processes to ensure rights are embedded in law and legally enforceable.

The PANEL framework is one way to embed human rights into aged care. That is: Participation; Accountability; Non-discrimination and equality; Empowerment; and Legality.

We can also learn from elsewhere in the world:

Drawing on other jurisdictions like Scotland, England, and Wales, which have implemented a human rights approach in the provision of health services,  we can see that training has a vital role to play in applying a human rights approach in practice.

For example, education and training for aged care decision-makers, service providers and all staff is essential on topics such as elder abuse, ageism, human rights, and understanding the scope and limitations of enduring documents – for example, sometimes enduring documents can be inappropriately used to restrict who can visit an aged care resident.

So what can you do to protect the rights of older people receiving aged care?

There are 5 simple actions:

  1. Help older people understand their rights. If they receive government-subsidised aged care services, the Aged Care Charter of Rights outlines their rights as a consumer, regardless of whether they receive home care services or are living in an aged care facility. The Charter is readily found online and outlined in a straightforward video. [v]
  2. Support them to know where to get support. If you or the person in care has questions about the care they or someone they know is receiving, or if there are concerns about elder abuse, there are organisations to contact:
    • Older Persons Advocacy Network, for advocacy support
    • Aged Care Quality and Safety Commission, for complaints
    • National Elder Abuse Phone Line on 1800 ELDERHelp (1800 353 374).

Hopefully all aged care facilities have an appropriate and transparent complaints procedure too, for not just older people and their families, but to you as staff members and managers who may want to report your concerns.

We need to work together and be vigilant so we can create supportive and safe aged care environments.

  1. Encourage people to prepare Planning Ahead documents.  Whenever I speak publicly, I always encourage people of all ages to have their enduring documents in place and keep their wills and Powers of Attorney updated. These documents are important tools for safeguarding a person’s will and preferences as they age. But I caution, they can also become instruments for abuse.  It is critical older people understand their rights, and someone’s power of attorney or guardian understands their responsibilities and what they can and cannot do in the role. As aged care staff and care providers please ensure you know about and understand these documents, and that the residents or clients understands their rights when an EPOA becomes active. Supporting older people to participate in completing Planning Ahead documents should be part of a whole and gentle conversation with them.
  2. Help older people to stay connected. Whether that be with family members, friends, or community through local activities. Isolation is a risk factor for abuse, and loneliness has been shown to have poorer health outcomes equivalent to smoking 15 cigarettes a day. Remaining connected to others is a way of self-protection. This is important for all of you too.
  3. Don’t internalise ageism. Several studies by Professor Becca Levy of Yale University have identified a significant association between internalised ageism and various deteriorating health outcomes including physical functioning, mental health conditions, cognitive decline, cardiovascular stress, and longevity. [vi]

Each year Professor Levy asks the students in her health and ageing class at Yale to picture an older person and share the first five words that come to mind. Don’t think about it too much, she tells them before writing the responses on a board. The responses include admiring words such as wisdom, creativity; and roles such as grandmother…But senility comes up a lot, stooped over, sick, and decrepit. Despite this, Dr Levy has found reason for optimism: Damaging ideas about age and ageing can change. Using the same subliminal techniques that measure stereotypical attitudes, her team has been able to enhance a sense of competence and value among older people themselves. Researchers in many other countries have replicated the results. And I quote: “You can’t create beliefs, but you can activate them,” Dr. Levy said, by exposing people to words like “active” and “full of life,” instead of “grumpy” or “helpless,” to describe older adults. [vii]Can any community undertake such a mission to reframe the way we consider ageing? I will leave that one with you ponder.

Supporting an exhausted aged care workforce

This provides me with a segway to make some brief comments about exhaustion or burnout in the aged care sector. Burnout is the experience of feeling exhausted, ineffective and mentally distanced from work. It’s something we’ve seen a lot through the pandemic as healthcare and frontline workers, including aged care staff, continue to meet new challenges during a time of great change and reform.

There is no easy fix, and I am not about to tell you how to run your business practice. But I would encourage you not to lose hope. Change can occur when all levels seek to work together to address the issues and support each other. This includes:

  • Individual staff members being supported to take self-care steps in their lives, perhaps through professional training/guidance;
  • Management improving workplace practices;
  • Providers making changes on an organisational level and
  • Governments working with the sector to address staff shortages.

According to the Royal College of Healthcare, the best thing we can do is see burnout as a collective problem, requiring collective understanding and care. Perhaps you could also collectively brainstorm some suggested steps to address at least some of the issues, as I acknowledge not all of them are within your control. 

I commend and thank you for continuing to seek better outcomes, for the commitment and care you and your staff have for the older people receiving your services.

In Conclusion

Human rights do not diminish with age. Nor do rights change as we transition into various forms of care.

We must put people at the heart of all aged care initiatives, so that the care received by every Australian accessing it is not ‘just good enough’ but is ‘more than good enough.’

Adopting a human rights-based approach to aged care, learning from best practice elsewhere in the world, and utilising technology all contribute to enhancing a consumers’ experience of aged care.

Individually, we also have a responsibility to ensure that we are aware of the rights of our residents and support them to know this too; encourage them to have documentation in place to protect these rights; to know the services they can call for advice and support when needed; be mindful of internalised ageism either your own or that of your residents; and lastly, remain connected to others, including friends, family, and community groups.

Family and friends also have a role to play in reducing risk factors. This can be as simple as making a call or visiting an older person to see how they are.

Exhaustion and burnout are a big challenge for many sectors that will not be easily resolved. Seeking to address it as a collective problem requiring collective care and understanding is a step in the right direction.

I have said over and over that some of us will require aged care in the future – and the culture we set now will be the culture we inherit.

It all adds up and can be summarised very simply as older people receiving aged care services, and indeed the workers supporting them, deserve our respect and compassion. My hope is that this commitment enhances the lives of our older people receiving care and the careers of those working in this worthy sector.

My time as the Commissioner concludes at the end of July, but I will keep a watching brief and keen interest in aged care.

Thank you.

End notes:

Dr Kay Patterson, Age Discrimination Commissioner