In Australia, over 300,000 people are entering aged care facilities each year. According to reports [1], around 3,100 patients are fit for discharge at any given time but are waiting for access to an aged care bed or home care package. This is causing disputes between hospital and aged care funders about the “bed block” which results.
Why the conversations don’t happen
Underlying this very political issue stands another. How many of those older Australians could have avoided a long, expensive hospitalisation which frequently leads to loss of conditioning, if their end of life care had been better planned? Talking through options with older family about their health status is a fraught issue. Reports in the health sector and amongst advocacy groups are replete with references to [2]:
- Denialism – older people who refuse to discuss their health. This can be due to fear of what lies ahead, an earnest desire to live life to the full whilst it is possible and a loss of insight about how frail they really are.
- Competition – families of older people may wish for them to stay at home because involvement in aged care often means selling the family home in order to pay for upfront costs of entry to care. Spouses may also feel concerned about the transition to living alone which the change catalyses.
- Ignorance – the potential for an unexpected event like fall leading to a broken bone or major orthopaedic or cardiac surgery to trigger loss of function from which the patient never recovers. The nature of end of life planning is also unknown.
- Culture – Australia and many other western countries lack a vocabulary around ageing and death. Consequently, conversations are hard. We can also be ageist so conversations about the normal course of life are resisted because people do not want to be put in a “box” both literally and figuratively.
- Optimism – in western countries death and dying have become outsourced and professionalised. Consequently, many people have never witnessed end of life first hand and are not prepared to notice commencement or engage with the journey. Their technological optimism that modern medicine can heal what millennia have been taking away is often unfounded and costly both in terms of the patient experience, the system costs and the ultimate futility of care.
The enduring power of attorney
What does an EPOA cover?
The result is patients entering hospitals and aged care facilities with no end of life care planning in place. One of the most challenging for patients and also for healthcare providers is the enduring power of attorney. An EPOA is a legal document which allows the patient to appoint someone they trust to make personal, healthcare and financial decisions on their behalf if they lose capacity to do so. Simply imagining a future where you cannot make important choices is confronting. Determining who will make those decisions can be difficult if family relations are strained or those closest to a patient live at a distance. Thinking through who will pay bills whilst you are incapacitated can be hard to imagine for folks who have managed their private affairs for all of their lives and have always kept such information private.
Common misunderstandings about EPOA responsibilities
For many people the fact that major cardiac surgery can have them intubated and sedated for days does not occur to them until they are preparing for surgery. Who will be their advocate whilst they are unable to literally speak for themselves? Such major surgeries can occur whilst people are still comparatively fit and healthy so the need for an EPOA has not been on their radar…until it looks like a swarm of bombers minutes from their target. This is not the best environment for negotiating the many choices the patient may face with their care and their wider lives.
A difficult document for everyone
For healthcare providers, the EPOA is a difficult document for other reasons. Those appointed as attorney, frequently misunderstand their responsibilities. The Office of the Public Guardian in Queensland has an information sheet [3]. It’s opening paragraph notes that you are being asked to “stand in their shoes and make decisions about their life when they are no longer able to”. It goes further and says that whenever you make a decision, you always need to take into account the persons views and wishes. Using past decisions by the person to inform decisions taken on their behalf is recommended as one strategy for achieving alignment.
Receiving a personal benefit is explicitly explained as a conflict transaction. This is easiest to understand in relation to financial transactions. Selling assets and utilising proceeds or transfers for gain can be contested by others. There are also rights for the Public Guardian to investigate and take away an attorney’s powers if they act inappropriately.
Beyond wealth, there are grounds for seeing the action of attorney’s as benefitting the person not the patient. For example, religious differences or views about vaccination can create challenges for healthcare providers. If a patient has regularly booked for immunisations their history would indicate they are accepting of vaccination as a preventative health strategy. Children with different views often withhold authority to immunise their parents, much to the concern and consternation of health workers.
The courts have ruled on examples of custodians, whether parents looking after children whose religious views preclude blood transfusions or other procedures or children looking after parents, making decisions which others contest as not in the best interests of the patient. However, these are rare instances. Most often, healthcare providers try and engage family around options and point to the need to make decisions based on the patient’s preferences.
There is growing disquiet about the stress this places on healthcare providers and the tensions it creates within families. Given Australia and other countries are facing the largest demographic shift every experienced, we need a more mature public conversation.
Learning from compassionate communities
Designing the program options for engaging the community to discuss death and dying is not easy. Images of grim reaper advertising from the 1980’s and state patronisation in campaigns from the middle of last century come to mind. These are not the approaches which will see more end of life care planning let alone more EPOAs engaging in their difficult duties with more balance.
There are, however, better developed alternatives, and they rest on a substantial body of theory. Over the past two decades a public health approach to palliative and end of life care has taken shape, most closely associated with Allan Kellehear, often described as the field’s first non-clinical professor of palliative care, who began at La Trobe University in 1998. Drawing on the World Health Organisation’s Ottawa Charter and its insistence that health is everyone’s responsibility, he argued that death, dying, loss and caregiving are not primarily medical events but social ones. His Compassionate Communities movement, and the related Compassionate City Charter, treat the health system as one player among many, alongside schools, workplaces, businesses, faith groups and neighbours. The logic is captured in his 95% rule: someone living with a life-limiting illness spends only around 5% of their final year in the direct care of health services. The other 95% is lived among family, friends and neighbours. If that is where dying mostly happens, that is where the conversation has to begin [4].
Death literacy: building confidence to talk about dying
A companion idea is death literacy: the practical know-how, skills and confidence to plan for and act on end of life and death care. It was developed by Australian researchers – Kerrie Noonan, Debbie Horsfall, Rosemary Leonard and John Rosenberg – whose work also produced a Death Literacy Index to measure it across whole populations. A related finding from this group speaks directly to the concerns raised here: caring for someone who is dying is itself one of the most powerful ways a community builds its social capital. In this light the denialism, ignorance and cultural silence described earlier look less like personal failings and more like symptoms of low death literacy – and literacy, unlike temperament, can be built [5].
Examples from the UK, US and Australia
Overseas, these ideas have moved well beyond theory. In the Somerset town of Frome, a project led by general practitioner Helen Kingston and palliative care physician Julian Abel combined enhanced primary care with deliberate community connection, mapping hundreds of local groups and training community connectors to link isolated people back into them. Over nearly four years, unplanned hospital admissions in Frome fell by around 14%, while they rose by more than 28% across the rest of Somerset – a result published in the British Journal of General Practice [6]. Alongside such structural models sit gentler entry points for the conversation itself. Death Cafés, which began in 2011, gather strangers to talk about death over tea and cake, with no agenda and no obligation to speak. Last Aid courses, developed in Europe, do for dying what first aid does for emergencies, teaching ordinary people the basics of supporting someone at the end of life in a few hours. In the United Kingdom the Dying Matters campaign, and in the United States The Conversation Project, have built national momentum around simply starting the discussion before a crisis forces it.
Australia has its own version of this work. The GroundSwell Project launched Dying to Know Day in 2013, now an annual occasion each 8 August that turns death and dying into a community conversation through everything from pub gatherings and shared dinners to cemetery tours [7]. In Western Australia, Samar Aoun’s Compassionate Connectors model has shown how trained volunteers can build supportive networks around dying people and their families, and the approach is now being translated to other regions. The numbers explain why this matters. Surveys suggest around three quarters of Australians have never discussed their end of life wishes, only a minority hold an advance care plan, and close to half die without a will – even though most say they would prefer to die at home [8]. An enduring power of attorney signed in the corridor outside an aged care assessment is the predictable result of leaving that conversation so late.
Where co-design comes in
Such emotionally charged and novel situations are perfect for co-design. It is not the role of the bureaucracy, the health system or even families to enforce their views on others. Depending upon your role there are many problems to solve:
- Patients in hospital with no end of life care planning and families who have never had conversations about choices embroiled in very emotional discussions
- Patients needing access to care with doors closed to that care until end of life documents are presented. This can lead to hasty documentation which less than adequately reflects the desires of older people.
- People appointed as EPOAs who have limited life experience for the role.
- The increasing cost of caring for older people in their last 12 months of life with patients and families asking for interventional care as it seems easier to medicalise than philosophise.
These differences in problem definition are common to the complex situations where co-design works best. Multiple perspectives bring a richness of conversation to the table. The datasets available can create options. For example, most people have no awareness of the cost of a bed for a day in hospital or the cost of more intensive treatment. They also have limited experience of the course of various treatments so assume that treatment is better than no treatment. Digging into the realities can be revealing. Statements like “Mum was always saying her grandkids are faring worse then she did with the price of housing and taxation. She would hate to think that for a few weeks of miserable existence, we have blown the cost of an apartment”.
Counting the real costs
Whilst life is precious and we need to protect older people as the holders of our wisdom and history, we also need to be aware that no action is without a cost. This is the reality of a constrained environment. Behavioural economics has done much modelling around how people make choices. Information is not the only thing required to provide more satisfying choices. Time, the right context, preparation and real information alongside self-knowledge are all involved in making better choices.
Understanding these underpinnings has never been more important. When hundreds of thousands of people are year and their multitude of family and friends are added up, we have a society on the move. The direction of that move is hard to predict as the frameworks in place are not obvious nor well developed. To date, much of our structure has been developed by lawyers, health system players and policy makers in government agencies responsible for ageing.
Yet the cost is worn by families and patients who experience these failures very directly. It is felt by healthcare workers who have to balance the inadequacies daily adding to their burnout and stress. Ultimately, the cost is worn by us all. The failure to plan for end of life is blocking beds. It is costing us funds which could be spent on preventative health which would keep people at home for longer.
Tapping into the shared passion and rising concern of the many stakeholders will hopefully produce better solutions. Being expected to generate a full end of life care plan, statement of choices, appoint an EPOA whilst navigating the paperwork involved in entry into aged care and the costs which it triggers is not the time for making decisions everyone can believe in. Some facilities let residents enter, but increasingly, facilities are holding residents out until the documents can be submitted. This just adds to the stress and inadequacy of what will be enacted. A better solution is to instigate a co-design process which unlocks how to engage our population in this critical issue earlier and more comprehensively.
Defining success together
We need to demystify end of life and in the process value the life and choices we have more. This would be success, but in many ways that is just our definition. Real co-design would be asking you to define success. What do you think?
Article References:
- https://www.abc.net.au/news/2026-02-13/aged-care-hospital-funding-bed-block/106336820
- Photo by Filipp Romanovski on Unsplash
- https://www.publicguardian.qld.gov.au/__data/assets/pdf_file/0005/599153/Responsibilities-of-an-attorney-under-an-EPOA-online-1.pdf
- Kellehear A (2005), Compassionate Cities: Public Health and End-of-Life Care, Routledge; see also Abel J & Kellehear A on compassionate communities and end-of-life care: https://pmc.ncbi.nlm.nih.gov/articles/PMC6330929/
- Noonan K, Horsfall D, Leonard R & Rosenberg J (2016), ‘Developing death literacy’, Progress in Palliative Care; the same team published the Death Literacy Index in 2019.
- Abel J, Kingston H, Scally A, et al. (2018), ‘Reducing emergency hospital admissions: a population health complex intervention of an enhanced model of primary care and compassionate communities’, British Journal of General Practice 68(676): e803–e810: https://bjgp.org/content/68/676/e803
- Dying to Know Day, an initiative of The GroundSwell Project running annually since 2013: https://www.dyingtoknowday.org
- Figures drawn from Dying to Know Day / The GroundSwell Project public health campaign materials: https://pubmed.ncbi.nlm.nih.gov/25960468/
