Changing demographics and community circumstances are leading to an increased need for care and support.

Most people say they would like to stay at home and although this is not always possible improved care co-ordination, access to primary and community support can help more people to achieve their goal.

The ACI Palliative Care Network undertook a robust research-based process to understand the needs of NSW residents and health professionals to inform the development of a model of care.

12 key learnings

From the diagnostic phase, we identified 12 learnings: 1


People’s needs change

The needs of the patient, family and carer during their end of life journey vary over time and care setting. Services need to be responsive, coordinated and flexible in meeting these changing needs.


Geography matters

People living in rural and remote areas experience additional barriers to receiving quality care at the end of life and rely on local, innovative strategies to help overcome these.


There are gaps in the reach of specialist palliative care services

Gaps in specialist palliative care services inhibit the reach of care to people with complex needs as well as limiting the support available to primary care providers.


Many people fall through the gaps

Care to people approaching and reaching the end of life is often fragmented and under-utilised by identified population groups or clinical cohorts. These include but are not limited to:

  • Aboriginal people
  • People of culturally and linguistically diverse backgrounds
  • People under the age of 65
  • People with non-cancer diagnosis such as motor neurone disease
  • People who live alone
  • People living with dementia.

Not every patient journey is the same

Current patient journeys are often poorly coordinated. This is particularly true for people with advanced chronic disease who have multiple comorbidities and a much slower and more unpredictable trajectory of functional decline.


Hospitals are the ‘default’ carers for many people

People in their last year of life make intense use of admitted acute hospital services including unplanned emergency admissions. Lack of advance care planning for admitted patients inhibits timely and coordinated care for people approaching and reaching the end of life.


There is unwarranted variation in clinical care

There are numerous factors that impact on reported unwarranted variation in clinical care. These include a lack of agreed and standardised clinical assessment tools and referral practices; insufficient resourcing, capability and workforce.


People want care to be provided as close to home as possible

Although most patients prefer to be cared for as close to home as possible, services required to provide such care are limited and often inflexible.


General practitioners and residential aged care providers experience a unique range of structural barriers that limit their capacity to provide palliative and end of life care

A range of structural barriers were identified that reduce the capacity of primary care providers (including GPs) and residential aged care facilities to provide optimal care to people approaching and reaching the end of life. For GPs these include an escalating demand to provide increasingly complex and at times, time consuming care. For residential aged care facilities these include inadequate staffing ratios, limited access to specialist palliative care expertise, limited access to GPs with skills and knowledge in providing care, limited access to a range of allied health services and inadequate training and other workforce development opportunities.


Community denial and discomfort of death and dying can block access to appropriate care at the end of life

Patients, families and some health providers are often reluctant to agree to referral to specialist palliative care services or to initiate end of life discussions. The stigma associated with death and dying along with often unrealistic expectations of modern medicine can make preparing for death less likely and this mitigates against a healthy approach to death and a peaceful death in many cases.


Language can be confusing

Palliative care means different things to different people. This range of definitions and conceptual understandings inhibit the ability to develop an integrated approach to care – one that crosses jurisdictions.


Leadership and collaboration is needed

For significant improvements to be made, strong leadership and collaborative action across jurisdictions including public, private, community sectors and individuals needs to occur.


  1. NSW Agency for Clinical Innovation Fact of Death Analysis 2011/2012 Report. Sydney: ACI Palliative & End of Life Care Network; 2015.