Overview of palliative care in Australia

The World Health Organization (WHO) describes palliative care as ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

  • provides relief from pain and other distressing symptoms
  • affirms life and regards dying as a normal process
  • intends neither to hasten or postpone death
  • integrates the psychological and spiritual aspects of patient care
  • offers a support system to help patients live as actively as possible until death
  • offers a support system to help the family cope during the patient’s illness and in their own bereavement
  • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
  • will enhance quality of life, and may also positively influence the course of illness
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications’ (WHO 2020a).

In January 2014, the WHO and the Worldwide Palliative Care Alliance released the Global Atlas of Palliative Care at the End of Life—a tool to advocate for including palliative care in the global, regional and national health agendas (WHO 2014). This tool supports countries to develop palliative care policies and services that integrate palliative care into their health systems. The WHO regard palliative care as a human right in high demand, with an estimated 20 million people needing end-of-life care each year. In May 2014, the World Health Assembly unanimously passed a resolution to strengthen palliative care as a component of comprehensive care throughout the life course.

Palliative care in Australia

In Australia, and many other parts of the world, the demand for palliative care services is increasing due to the ageing of the population and the increases in the prevalence of cancer and other chronic diseases that accompany ageing (WHO 2014).

Historically, it was assumed that palliative care would commence only once all treatment aimed at ‘curing’ people had finished or only when a person was dying, however it is well accepted that there is benefit in providing palliative care in association with disease modifying therapies for longer periods, and earlier within a person’s illness for non-cancer conditions (PCA 2018).

Palliative care is provided in almost all settings where health care is provided, including neonatal units, paediatric services, general practices, acute hospitals, residential and community aged care services, and generalist community services.

Specialist palliative care services operate from a variety of settings, including specialist inpatient consulting services, specialist inpatient settings, hospices and community-based specialist services (DoH 2018). Specialist palliative care comprises of multidisciplinary teams with specialised skills, competencies, experience and training to deliver care to people where the palliative needs are complex and persistent (PCA 2018).

The exact model of care provision differs across Australia, with each state and territory having specified an approach to providing palliative care-related services (Senate Community Affairs References Committee 2012). The states and territories have different approaches to planning and delivering publicly funded services, different local service delivery practices and differently structured health-care systems. They also have varying demographic and remoteness profiles, and varying demands for particular types of services. Over the last decade, there has been a focus on expanding the practice of specialist palliative care teams to support primary palliative care providers, often through consultative or consortium arrangements (ANZSPM 2011). More recently, the Australian government established the Royal Commission into Aged Care Quality and Safety in October 2018, which has received various submissions on palliative care within the aged care sector. The Commission’s final report is expected to be released in February 2021.

While palliative care can be provided to patients in a variety of settings, a distinction is commonly made between care provided in hospitals (includes hospices or dedicated palliative care wards) and care provided in the community (such as in the patient’s home or in residential aged care facilities).

National policies for palliative care

Australian Governments have committed to addressing the palliative care needs of Australians through the National Palliative Care Strategy 2018 (the Strategy) (DoH 2018). This version of the Strategy builds on the work of the first National Palliative Care Strategy, published in 2000, and the second version published in 2010.

The 2018 Strategy was produced following a 2016 evaluation of the 2010 Strategy, and involved extensive consultation with Australian Government and state and territory health departments, carers, consumer and service providers peak bodies, clinicians and a range of service providers and other key organisations involved in palliative care.

The Strategy outlines a number of priority goals including robust data collection, monitoring and reporting, and will include an implementation plan and a monitoring and evaluation plan which aim to meet the identified demand for high-quality palliative care services across Australia. These goals encompass building and enhancing the capacity of all relevant sectors to provide quality, appropriate and effective palliative care to all Australians who need it.

The purpose of the National Palliative Care Strategy 2018 is to guide improvement of palliative care across Australia and provide a shared direction. The Strategy represents a commitment of all Australian governments to ensuring the highest possible level of palliative care is available to all people (DoH 2018).

In October 2012, the Senate Community Affairs References Committee released its report into palliative care in Australia (Senate Community Affairs References Committee 2012). The Committee made 38 recommendations, including the need for improved access to information on services. Noting the lack of comprehensive palliative care data, the Committee highlighted in its report the need for consistent data collection practices to become fixed in the clinical environment and for systems to be set up to enable palliative care data to be accurately collected, analysed and reported. The Productivity Commission released its report Introducing Competition and Informed User Choice into Human Services which also recommended that the Australian and State and Territory Governments should ensure that sufficient data are available to enable governments to monitor how well end-of–life services are meeting patient’s needs across care settings (Productivity Commission 2017).

In addition to the Strategy, each state and territory has a range of initiatives in place to improve the delivery of palliative care services. For example, some jurisdictions have overarching frameworks or strategies to guide service improvement, such as the New South Wales End of Life and Palliative Care Framework 20192024, Palliative Care Victoria Strategic Plan 20182022, and the WA End-of-Life and Palliative Care Strategy 20182028.

Better palliative care data will assist policy makers, palliative care providers, researchers and the general public to better understand the amount and nature of palliative care activity in the Australian health-care sector. Reliable, accurate and comprehensive data about health-care services can improve the quality of care and lead to better health outcomes through:

  • highlighting areas in need of more or different types of services
  • highlighting inequalities and inequities in access to and outcomes of care
  • helping to assess the uptake of guidelines and evidence-based practices and to evaluate the effects these practices have on patient outcomes, as well as other consequences
  • helping to detect barriers to and facilitators of the uptake of best-practice patterns of care
  • helping to understand trends in the use of pharmaceutical medicines in palliative care to inform policy and research
  • helping to recognise changes in practice and consequent changes in outcomes
  • informing evidence-based policy and strategy decisions
  • providing practitioners with information and the ability to make appropriate decisions and to provide high-quality care (AIHW 2008).

A strategic plan to improve national information on palliative care and end-of-life care is being developed by the Australian Institute of Health and Welfare. This will provide the foundation priorities for better national data into the future.

Response to COVID-19 pandemic

All Australian governments have been responding to the impacts of the COVID-19 pandemic as the effects and impact of the virus have become better understood. Palliative care is considered an essential component of the public health response to the pandemic, with the World Health Assembly including palliative care in their COVID-19 resolution (WHO 2020b).

It is likely that the demand for palliative care services will increase in line with the number of Australians dying from COVID-19. Current evidence also indicates that the main groups of patients receiving palliative care are those most vulnerable to severe illness if infected with COVID-19.

In March 2020, the Australian Government expanded Medicare-subsidised telehealth services to allow Australians to access health services from home or place of care and help limit the potential exposure of patients and health practitioners to the virus. This included new temporary MBS items for palliative care service providers to provide telehealth services, either by videoconference or by telephone, as a substitution for existing face to face MBS consultation services (DoH 2020).

The growing demand for palliative care from our ageing population was already posing significant challenges to the provision – delivery, availability and quality – of palliative care to existing patients before COVID-19. Changes to the delivery of palliative care services necessitated by measures to control COVID-19 have caused further strain on the overall provision of palliative care in Australia, for both the admission of new palliative care patients with diseases other than COVID-19, and for those few who have so far died from COVID-19. Health services are also likely to face an increase in the need to address the grief, bereavement and mental health needs of palliative care patients and their families during the pandemic. While it will be some time before we fully understand the impact of COVID-19 on the delivery of palliative care, for both clinicians and their patients, the things that we learn will help planning for future events.


References

AIHW (Australian Institute of Health and Welfare) 2008. Review and evaluation of Australian information about primary health care: a focus on general practice. Cat. no. HWI 103. Canberra: AIHW.

ANZSPM (Australian and New Zealand Society of Palliative Medicine) ANZSPM 2011. Workforce Strategy: Meeting the palliative medicine needs of patients in Australia 2011-2015 and beyond. Canberra: ANZSPM.

Cairns W, Coghlan R 2020. Palliative care during the COVID-19 pandemic. Canberra: Palliative Care Australia.

DoH (Department of Health) 2020. Medicare Benefits Schedule Book, effective March 2020. Canberra: Department of Health.

DoH 2018. National Palliative Care Strategy 2018. Canberra: Department of Health. Viewed 9 July 2020.

PCA 2018 (Palliative Care Australia). Palliative Care Service Development Guidelines. Canberra: Palliative Care Australia.

Productivity Commission 2017. Introducing Competition and Informed User Choice into Human Services: Reforms to Human Services, Draft report. Canberra: Productivity Commission.

Senate Community Affairs References Committee 2012. Palliative care in Australia. Report to the Senate, Australian Government. Canberra: Senate Community Affairs References Committee.

WHO (World Health Organization) 2014. Global Atlas of Palliative Care at the End of Life. Geneva: WHO.

WHO 2020a. WHO definition of palliative care . Geneva: WHO. Viewed 9 July 2020.

WHO 2020b COVID-19 response. 73rd World Health Assembly. 19 May 2020. Viewed 9 July 2020.