Many people spend the last stages of their lives in aged care, and for that reason Palliative Care Australia believes that end-of-life care should be recognised as core business for residential aged care. Increasingly, aged care providers are recognising the need to ensure their workforce have the necessary skills and competencies to deliver high quality end-of-life care. Yet in spite of this recognition, access to quality palliative care services is far from guaranteed in residential aged care – particularly in rural and remote areas.
We all want the ‘best death possible’ for our loved ones and ourselves as we enter old age. So we need to ask ourselves, what are the barriers to accessing care that can support this, and will looking at the issue from a population or needs-based policy perspective help to ensure end-of-life care becomes core business for all aged care providers?
Older Australians are not a homogenous group, with different life experiences, beliefs and backgrounds and with varying degrees of health and wellbeing. Between 2011 and 2013, nearly 360,000 people aged 65 and over died in Australia (80% of all deaths). Most of those were older, with only 1 in 5 (18%) of those who died aged 65–74. Some 34% were aged between 75–84, and nearly half - 47% - were aged 85 and over.
The leading cause of death for all older Australians was coronary heart disease—causing 53,900 deaths between 2011–2013, followed by dementia and Alzheimer’s disease (30,900 deaths in total), cerebrovascular disease (30,300 deaths), lung cancer (18,400 deaths) and chronic obstructive pulmonary disease (16,700 deaths).  These figures show us that many, if not most, of the older members of our community are dying of chronic disease – conditions that require ongoing treatment and symptom management.
Solid evidence-based policy has always been fundamental to the design and delivery of health and aged care. An example of this is the Living Better Living Longer aged care reforms. These reforms, which enjoyed bipartisan political and sector support, were undertaken primarily to ensure the aged care system, which was and is facing increasing pressure:
- delivers high-quality, safe and appropriate care
- is accessible, sustainable and affordable
- offers choice and flexibility for consumers
- encourages businesses to invest and grow
- provides diverse and rewarding career options.
The introduction of consumer-directed care – a key element of the reforms - has provided choice and control to aged care consumers, who are now able to choose which services they receive, who will deliver these services, and when.
The reforms were informed by comprehensive policy analysis and consultation with the health and aged care sectors. Changes have been carefully staged, and have occurred or are planned to occur across three separate time periods to ensure consumers and providers are prepared.
The first two years introduced system improvements, new home care packages, a national contact centre, and new agencies to oversee quality and pricing regulation. The second two years primarily focused on improving access, choice, and quality.
The period we have just entered, from 2016-17 to 2021-22 will usher in the most significant reforms, including even greater consumer control, a single quality framework, a renewed focus on supporting diversity and a whole of system legislative review, while at the same time supporting the expansion of the sector to cater for the needs of our ageing population.
To date, the reforms have been successful, delivering more support and care at home, additional home and residential care places, greater consumer choice and control, greater recognition of diversity, and support for carers. The achievement of the broad based policy objectives has been underpinned by research, collaboration with the sector, consultation with consumers, and supporting legislation - all key tools of successful government policy design and implementation.
Despite these many successes and achievements in reforming aged care, there are still troubling challenges within the policy environment for palliative care. These include the complexities of caring for an ageing population, the increasing burden of disease workforce scarcity and skills gaps, the cost of care delivery, and the decreasing availability of carers.
From 2009-10 to 2049-50, real health spending on those aged over 65 years is expected to increase around seven-fold. Over the same period, real health spending on those over 85 years is expected to increase around twelve-fold. As successive Intergenerational Reports and Treasurers have foreshadowed, this level of growth is not affordable or sustainable.
With the ageing of the population, the pattern of diseases is also changing, with even more people expected to die as a result of serious chronic disease.
Older Australians deserve quality care at the end of their lives, regardless of where they live. The low level of access by residential aged care services of funding for palliative care suggests an underassessment and treatment of people who require palliative care in residential aged care facilities. We need to work with residential aged care services and the government to identify better ways of identifying residents’ needs for palliative care earlier in the trajectory of the consumer’s disease.
The Aged Care Roadmap  - another critical piece of the aged care policy pie – was produced by the Aged Care Sector Committee to provide a guiding path on future directions for aged care. The roadmap takes account of the reforms to date and identifies areas for further action to respond to future challenges and transform aged care in nine key domains covering consumer engagement, needs assessment, availability of care, meeting diverse needs, dementia support, payment, workforce and quality.
The Aged Care Roadmap is an excellent document yet, given the number of people who access aged care services in the year before their deaths, it is surprising that it does not make any direct mention of end-of-life or palliative care. To help address this, and to raise awareness of the need for palliative care in aged care, Palliative Care Australia has been working with a number of aged care peak bodies to develop a set of principles for palliative care within residential aged care. We have been very encouraged in this work, as it is a concrete acknowledgement and recognition from within the sector that more can and should be done for people in of aged care who are faced with living with a life-limiting illness.
Just as the policy work that helped to design and construct the Living Better Living Stronger framework was based on sound evidence and consultation with stakeholders, here is now an exciting opportunity for the palliative care sector to better understand and engage with the policy design process and, importantly, how to change or influence it. Unfortunately, however, the health and social sectors (including the palliative care sector) lack a comprehensive understanding of government policy development processes and indeed the fundamental of good evidence-based policy design .
Crammond and Carey in their seminal article “What is policy and where do we look for it when we want to research it” suggest a range of elements that can influence policy and therefore effect real change. Some of these elements include:
Policy narratives: are attempts to unite actors behind a common goal. For example, development of principles for palliative care in residential aged care, supported by aged care peak bodies, would be one way to create a “policy narrative’’. The purpose of a policy narrative is to communicate goals, which are underpinned by evidence.
Think tanks: seek to form new policy ideas and influence policy decision–making. The Deeble Institute and the Grattan Institute are two think tanks that have been bringing together the academic domains with public policy in relation to end-of-life care and palliative care.
Networks: to influence and shape policy. The National Aged Care Alliance (NACA) is one network which is a representative body of peak national organisations in aged care, including consumer groups, providers, unions, and health professionals, working together to determine a more positive future for aged care in Australia. This network can be further mobilised to influence the political debate about how Australians should be cared for at the end of life. Much of the work of NACA – which can directly influence government policy- can be found in the grey literature– which can shape political discourse. Other networks such as Palliative Care Australia, with its national reach and state- and territory-based membership, as well as peak workforce bodies, also work to shape formal policy action through public pressure (media, social media, blogs, positions statements, etc).
Street level bureaucrats: According to Crammond and Carey, “policy is now understood to be delivered by complex networks of actors who may exist inside or outside of government (eg, located within non-government organisations)”. Further, their actions can alter the scope and outcomes of policy”. There are many actors working in the policy palliative care and end-of-life space, with Palliative Care Australia being one of these groups, as is CareSearch.
Crammond and Carey forcefully make the point that “effectively understanding policy and its relevance for public health requires an awareness of the full range of places and contexts in which policy work happens and policy documents are produced”.
What this tells us is that policy matters, but it is a ‘many headed’ beast. As a sector, palliative care needs to understand this and work together with other actors, across many levels to achieve mutually agreed change. A resource such as palliAGED - the online evidence-based guidance and knowledge resource for palliative care in aged care – is a lever through which policy change in aged care can continue, providing a greater focus on information and resources to support all those involved in caring for older Australians approaching the end of their life.
Palliative Care Australia will be using National Palliative Care Week 2017 to focus on residential and aged care, to highlight these issues and how we can overcome them, as well as acknowledge those aged care providers that deliver high quality end-of-life care.
These are the messages, as policy ‘actors’ or ‘street level bureaucrats’’, we can all be delivering at every opportunity.
- Palliative care should be available to people receiving aged care services, to assist in managing their symptoms and improve their quality of life.
- There are over 350,000 Australians cared for by aged care providers. Maximising their quality of life and ensuring a good death is a basic right.
- People accessing aged care services have a right to talk about their end-of-life wishes with their loved ones, aged care staff, and doctors.
- Members of the community should be proactive in asking aged care providers about the end-of-life care available within their service.
- It is important to talk about dying with those closest to you. Talking about dying won’t kill you.
- Palliative Care Australia’s Dying to Talk Discussion Starter makes having those conversations easier.
Palliative care bodies from all states and territories will be hosting a series of events during National Palliative Care Week to raise awareness for palliative care in aged care settings and increase the engagement between aged care providers, patients, and their loved ones.
Liz Callaghan is the CEO of Palliative Care Australia, the national peak body for palliative care.