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