The World Health Organization (WHO) describes palliative care as ‘an approach that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or 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 (WHA 2014; WHO 2020a).
In 2014, the World Health Assembly unanimously passed a resolution to strengthen palliative care as a component of comprehensive care throughout the life course (WHA, 2014). In the same year, 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). The second edition was released in 2020, and is designed to support countries to develop palliative care policies and services that integrate palliative care into their health systems (WHO 2020a). The WHO regard palliative care as a human right in high demand, with an estimated 26 million people needing end-of-life care each year (WHO 2020a).
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. Now, it is well-accepted that there is benefit in providing palliative care in association with disease-modifying therapies that aim to prolong life. It is also recognised that many people with life-limiting illnesses are not ‘cured’, but continue to live with these illnesses for many years (PCA 2018).
Palliative care is now 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. A distinction is commonly made between care provided in hospitals (including 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).
Specialist palliative care services are comprised 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). 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 2019).
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 received various submissions on palliative care within the aged care sector. The Commission’s final report was released on 26 February 2021. Key recommendations for palliative care included compulsory palliative care training for aged care workers, comprehensive sector funding specifically including palliative care and end-of-life care, a review of the Aged Care Quality Standards to regulate high quality palliative care in residential aged care, access to multidisciplinary outreach services, and a new Aged Care Act that includes the right to access palliative care and end-of-life care. The Australian Government formally responded to the Royal Commission’s recommendations in May 2021 (Australian Government Response to the Final Report of the Royal Commission into Aged Care Quality and Safety), committing to a range of reforms which are now at various stages of implementation.
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 2019). 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 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 ensure the highest possible level of palliative care is available to all people who need it (DoH 2019). The Implementation Plan for the National Palliative Care Strategy was released in October 2020, and a monitoring and evaluation plan will support reporting on the progress of the Strategy.
The Strategy outlines a number of priority goals, including robust data collection, monitoring and reporting, 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.
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 2019–2024, Victoria’s End of Life and Palliative Care Framework, South Australia Palliative Care Strategic Framework 2022–2027, Queensland Palliative and End-of-Life Care Strategy 2021–2026, Palliative Care Tasmania Strategic Plan 2022–2025 and the Western Australia End-of-Life and Palliative Care Strategy 2018–2028.
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, titled the National Palliative Care and End-of-Life Care Information Priorities, has been developed by the Palliative Care and End-of-Life Care Data Development Working Group. This provides the foundation priorities for better national data into the future.
Response to COVID-19 pandemic
Palliative care is considered an essential component of the public health response to the COVID-19 pandemic, with the World Health Assembly including palliative care in their COVID-19 resolution (WHO 2020b). However, the pandemic also poses a number of issues to the delivery and quality of palliative care, such as limited financial and human resources, access to palliative care medication, and isolation due to social distancing measures (WHO 2020c).
The Australian Government has responded to the impacts of the COVID-19 pandemic as the effects and outcomes have become better understood. In March 2020, Medicare-subsidised telehealth services were expanded 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 which could be used by palliative care service providers, among other specialists, 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 leading to an increase in demand for the provision – delivery, availability and quality – of palliative care prior to the COVID-19 pandemic (DoH, 2019). Changes to the delivery of palliative care services, necessitated by measures to control the COVID-19 pandemic, have added complexity to 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 who have died from COVID-19 (PCA, 2020a). Health services also faced the need to address the grief, bereavement and mental health needs of palliative care patients and their families during the pandemic (Cairns and Coghlan, 2020; PCA, 2020b).
It will be some time before we fully understand the impact of the COVID-19 pandemic on the delivery of palliative care, for both clinicians and their patients. It is hoped that data presented in Palliative Care Services in Australia, particularly time series data, will help to understand these impacts and plan for future events.
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