Much has changed within palliative care over the past decade, including expansion of the evidence base for clinical care, re-design of service delivery models of care to meet changing community expectations and needs, and changes to the language used to describe those we care for. Most importantly there is increasing recognition that caring for people who are approaching and reaching the end of life is everybody’s business – everybody in health, aged and social care has a role to play.
In alignment with the World Health Organisation definition, Palliative Care Australia defines palliative care in the contemporary Australian context as:
Palliative care is person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die, and for whom the primary treatment goal is to optimise the quality of life.
Palliative Care Australia considers that the following elements are integral to understanding this definition of palliative care:
Palliative care should be strongly responsive to the needs, preferences and values of people, their families and carers. A person and family-centred approach to palliative care is based on effective communication, shared decision-making and personal autonomy.
Palliative care should be available to all people living with an active, progressive, advanced disease, regardless of the diagnosis.
Palliative care affirms life while recognising that dying is an inevitable part of life. This means that palliative care is provided during the time that the person is living with a life-limiting illness, but it is not directed at either bringing forward or delaying death.
The National Palliative Care Standards (the Standards) clearly articulate and promote a vision for compassionate and appropriate specialist palliative care. The Standards recognise the importance of care that is person-centred and age-appropriate. In particular they point to the requirement for specific attention to the needs of people who may be especially vulnerable or at risk. This may include, but is not limited to, Aboriginal and Torres Strait Islanders; asylum seekers; people who have experienced torture and trauma; people who are experiencing homelessness; people living with mental illness, intellectual disabilities or dementia; paediatric populations; people with unique clinical needs; people who are lesbian, gay, bisexual, of transgender experience and people with intersex characteristics (LGBTI), people from culturally and linguistically diverse (CALD) communities, or those experiencing other forms of social or economic disadvantage.
The Standards need to be relevant to those specialist palliative care services with a sole practitioner, as well as larger services that are more resourced with comprehensive research and teaching roles – and to everything in between. They are generally normative standards but also incorporate aspirational components to support those services with growing capacity and capability.
This 5th edition of the Standards has been developed to reflect the significant changes that have occurred since 2005 and to continue to support specialist palliative care services as they work to ensure that the people they service have access to the highest quality of care as they approach and reach the end of life.