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End-of-life project builds aged care palliative care capacity

By Shona McQueen

Catholic Health Australia

Australia’s ageing population is placing a huge strain on the nation’s aged care and palliative care systems. By 2050 the number of Australians aged 65 and over will more than double.

The World Health Organisation has highlighted the potential contribution palliative care can make in reducing unnecessary hospital admissions. However, increasing awareness, knowledge and skills is an important step in realising its benefits. 

Eighty per cent of Australians use an aged care program at some stage and more than a third of all deaths occur in residential aged care. Mercy Health, a Catholic Health Australia member, says people are coming into aged care older and often sicker and frailer than ever before. Many people are palliative from the time they come into a facility which means they may need care in managing dementia and other comorbidities in the final stages of their life.

End of Life Directions for Aged Care (ELDAC), funded by the Australian Government Department of Health and Aged Care, aims to improve the aged care workforce’s capacity to provide quality palliative and advance care planning. Catholic Health Australia is part of the consortia of universities and peak bodies that run ELDAC.

Since 2017, ELDAC has worked to address the gap in palliative care by connecting health professionals and aged care workers with information, resources, and services, to improve quality care for older Australians at the end of their lives. ELDAC aims to educate, empower, and inform aged care workers by providing free and easily accessible information that builds knowledge and skills across the sector. 

We talk to everyone, from residential aged care facilities and community aged care providers to specialist palliative care providers and advance care planners, and everyone in between.

We empower general practitioners, aged care providers, and other health care workers with knowledge of palliative care and advance care planning relevant to their situation. As Mercy Health says ‘when you are looking for palliative care information, you don’t need to reinvent the wheel.’

ELDAC also links primary, aged and palliative care services, and provides advice on palliative care, advance care planning, and advance directive resources, processes, legislation and accountabilities.

Our website (www.eldac.com.au) contains a range of resources such as evidence-based tool kits developed to support workers in specific aged care settings. There is also a dashboard application that can be embedded into residential facility IT systems to help managers and staff track residents’ and clients’ needs. Other technology solutions include an online self-care resource for aged care staff and organisations and an app for home care staff to help them identify end-of-life care needs and respond accordingly.

We provide a guide to relevant learning resources for facilities and staff, with tools to identify existing educational activities and gaps. We also try to improve quality of care, prevent unnecessary hospital admissions, and shorten hospital stays by encouraging cooperation between aged and palliative care services.

ELDAC contributes to system capabilities by conducting evidence reviews and engaging with all jurisdictional groups to build awareness of its work. And we have launched a national campaign to acknowledge aged care’s role in end-of-life care and to improve death literacy and awareness among aged care workers.

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

Dear reader, what are meaningful activities?

By Judith Leeson

Director Vector Consultants, Career Development Counsellor and Coach/Hope Filled Engagement

I wonder if, like me, you are sitting in your favourite chair reflecting on the years that have passed, and those to come, and wondering how your future will look. At present I am coping with somewhat limited physical abilities, living independently with my husband on our small rural property and trying to imagine what the transition from Home Care Support to residential care may look like, if or when needed.

My day is lived exactly how I want to live, after six decades of paid employment- sleep in until 9 am, breakfast in my dressing gown, shower, put on farm- sensible clothes, and go out into the garden. There I am able to closely inspect our veggie garden, and herbaceous border, pull up some stray weeds and make a secret list of tasks for my husband.

My next enjoyable task is to check and respond to my emails, read the world news on the internet, and look for learning opportunities where I am able to enrol in stimulating webinars that match my interests and my values. I then reply to messages from family, friends and colleagues, and compose provoking responses to people on LinkedIn and Facebook. Lunch on leftovers with my husband, and then a whole afternoon to do exactly what pleases me, and also is of use to the community. Some days it is reading, others coffee and shared cake with friends, movies, visits with the Garden Club, attending Board meetings, dozing in my chair, feeding the chooks, picking the roses, and planning the evening meal.

All of these activities have meaning, contribute to my purpose-driven life, and are just a small portion of what I do throughout my day – but no day is the same, as I respond to the outside world, and try to sustain the important relationships I enjoy.

So, what are meaningful activities? For me, they are those which allow me to express my interests, and my values, and to build on my experience through learning new and useful skills. Some of them enable me to continue my life of supported independence, those which enable me to explore the world, sometimes by proxy, and continue to initiate and maintain meaningful relationships. My voluntary work is very important to me, and I am trying to make a difference where I can, so I read widely and write down my thoughts.

Does your day resemble mine? What has meaning for you and makes your day sing? Would you like to share some of my daily activities in residential care, or would the prospect fill you with horror? Let’s hope that there will be an affectionate dog, a lazy demanding cat, and some chooks in the garden so that we can engage with them, feed and love them. Perhaps there will be a small library, even a book club, classes in painting or craft, some classical music performances, opportunities to be involved in the University of the Third Age, immersive travel experiences using virtual reality, a woodworking shed, cooking for fun (with lots of chillies), a garden to tend, and veggies to include in our menu, even an elegant bar for sundowners, and a special space for reading? What support, if any, would you need to choose your daily activities so that you continue to have a meaningful life in residential care?

How would you like to transition into residential care from where you live, or from hospital if you have been ill or had an accident?  On my first day in residential care, when everything is strange and new, I would like to sit with someone who is genuinely interested in the life I have left behind, the previous day in fact. I would want to continue the life I had and be able to select daily activities that have purpose and meaning for me. I would want my choices from yesterday acknowledged today as being of importance and meaningful to me. I would want real challenges, but genuine support to engage with my family, friends and the world as I had done yesterday.

If I have early dementia, I may need assistance to undertake meaningful activities during my day but substituting any with little or no meaning for me would further reduce my capacity to make decisions and continue to learn. Meaningful activities are motivated by our interests, values, preferences and past experience, and often involve learning. They cannot be superimposed or reduced to meaningless tasks. Without our story to inform our daily lives, activities can be mindless, filling in time without purpose, blankly watching a television program aimed at adolescents. 

So, dear reader, how would you want to spend your days in residential care? We are all unique individuals, with unique life histories, so what activities would be meaningful to you?  If my short list of activities that would be meaningful to me is not of interest to you, what would you choose?

Please let me know, dear reader so that we can transform our future in aged care, our lives continue to have purpose and meaning, and our days continue with hope-filled engagement.

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

Helping people take control of their ageing journey

By Hilary O’Connell

Wellness and Reablement Lead, iLA.

The Australian population continues to increase in age and supporting older Australians to live well and have the best quality of life for as long as possible is a key government objective.

Ageing is a normal experience for everyone and affects people differently through their lifespan. Healthy ageing means different things to different people. To some it might mean living independently at home, for others, it means having the best possible physical and mental health or maintaining social connections with family, friends, and the wider community.

As we age, for some people, managing everyday activities of daily living can become compromised and support from the aged care system may be sought. At this stage, the response is often for services to be provided such as cleaning, personal care, social support, and meals to compensate for what a person is having difficulty doing as opposed to providing support to help a person retain or regain their capacity to manage, without that support.

Whilst ageing itself is inevitable, how we age according to the World Health Organisation (WHO) is prefaced by healthy behaviours throughout life. WHO defines healthy ageing as ‘the process of developing and maintaining the functional ability that enables wellbeing in older age’ and ‘creating the environments and opportunities that enable people to be and do what they value throughout their lives’. [1]

Importantly, WHO reiterates that being free of disease or infirmity is not a requirement for healthy ageing as many older adults have one or more health conditions that, when well controlled, have little influence on their wellbeing.

Maximising a person’s chance of ageing as well as possible

In the context of WHO’s definition of healthy ageing and the need to create the environments and opportunities that enable people to live and age well, how do we better support people to:

  • move more/be physically active
  • maintain a balanced diet
  • be socially connected
  • stay cognitively sharp
  • maintain a sense of purpose and,
  • have a positive attitude towards ageing.

And importantly for older Australians receiving support from the aged care system, how do we move away from predominantly task-based care delivery to supports that actively enable and maximise a person’s capacity, health and wellbeing?

Changing the discourse

The need to change the discourse within the aged care sector to one which has a preventative focus was identified in the 2021 Royal Commission into Aged Care Quality and Safety Final Report. The report referenced the need for a greater focus on healthy ageing and reablement, and a requirement for increased access to preventative care and early intervention to address risk factors that delay the need for aged care services. [2]

Additionally, the Australian Government’s Commonwealth Home Support Program requires service providers to deliver support within the context of a wellness, reablement or restorative care approach. This means providers need to focus on supporting older Australians to actively retain and/or regain their highest level of function, independence, and confidence to manage daily living activities and in so doing reduce their need for longer-term support.

Yet despite the plethora of information around how age-related decline can be minimised through reabling approaches, there continues to be an entrenched stereotype of individual ageing as an inevitable process of decline and degeneration over which we have little control. And worryingly a seeming lack of association between the abundance of information available about how to actively support people to retain and/or regain capacity and the delivery of aged care services.

Everyone should have access to the information and support they need

LiveUp is an initiative launched in 2022, to bridge this important interface between promoting healthy ageing behaviours and empowering older Australians to remain independent for longer. Developed by iLA with funding from the Australian Government Department of Health and Ageing, LiveUp is a free national healthy ageing platform designed to promote early intervention and delay the premature decline of a person’s capacity to live or function independently. The site, liveup.org.au, is a valuable resource not only for individuals but also for aged care providers and can help people take what could be seen as an investment approach to ageing, to help us think about what healthy ageing looks like and consider how we want to live our later years. With the knowledge that even small changes make a big difference.

LiveUp offers an online quiz, screening tool, and access to impartial information and personalised suggestions. The site encourages people to take action. This might include making a minor lifestyle modification to optimise their level of ability, commencing an exercise routine, self-selecting and purchasing a low-cost assistive technology product, connecting with locally relevant activities and community support or contacting My Aged Care. LiveUp also features regularly updated healthy ageing articles designed to provide information on various age-related issues, and people can join their online community – the ConnectUp Facebook Group - to share their healthy ageing journey, ask questions and support others to optimise their health and wellbeing.

It is never too early or too late

We all know there are everyday things that we can do to help us fully live our later years. The premise of LiveUp is that by helping people understand how to take control of many of the changes that occur as we all age, people can take action and continue to enjoy the highest quality of life. The site highlights the importance of that old adage, ‘use it or lose it’something that is relevant to us all.

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

1. World Health Organization. Healthy ageing and functional ability [Internet]. Geneva: WHO; 2020 [cited 2022 Nov 1]. Available from: https://www.who.int/philippines/news/q-a-detail/healthy-ageing-and-functional-ability

2. Royal Commission into Aged Care Quality and Safety. Final report: Care, dignity and respect - Volume 1 summary and recommendations [Internet]. Canberra, ACT: Commonwealth of Australia; 2021 [cited 2021 Aug 30]. Available from: https://agedcare.royalcommission.gov.au/publications/final-report-volume-1