The Australian Palliative Care Outcomes Collaboration (PCOC) is the national evidence hub on patients' daily pain and symptom outcomes in Australia. This is evidence of the effectiveness of palliative care.
We have information on pain and symptom control for more than 250,000 people who have received palliative care over the last decade.
The information produced by PCOC is used by clinicians and by local, state and national providers of palliative care to continually improve care for patients and their families.
How many people receive palliative care?
Only about 40% of people who could benefit from palliative care receive it.
Palliative care is highly effective for the majority of people. For most, symptoms and problems improve with palliative care.
About 100,000 people die a predictable death each year in Australia.
Of those, 40,000 receive specialist palliative care and 60,000 do not.
What type of evidence is collected?
PCOC provides the best national and local evidence of the needs and outcomes of patients and their families, including the effectiveness of their care.
Palliative care clinicians use our standardised patient and family / carer assessment tools to assess and respond to each patient’s needs.
People may receive palliative care for years, months, weeks or days before death. The PCOC assessment tools are used to measure and track symptoms and problems.
PCOC measures outcomes for pain, physical symptoms, psychological-spiritual needs, as well as family and carer outcomes. We also measure outcomes for people as they move between home and hospital.
What are the most common symptoms and problems?
The majority of palliative care patients have no or mild symptoms and problems in the last stage of their life.
A small number of people have high symptom needs and burdensome problems.
Fatigue is the most common symptom. It causes severe distress for around 13% of patients and this reduces to approximately 8% just before death.
Pain is next most common symptom, with 7% of people experiencing severe distress and this reduces to approximately 2.5% just before death.
Other problems with appetite, breathing, bowels, insomnia and nausea are experienced by less people and all of these symptoms are improved by the end of palliative care (see figure below).
Percentage of patients reporting severe distress at the beginning of palliative care and just before death
What are the experiences of people in their last few days of life?
For people receiving palliative care, severe pain or other distressing symptoms are rare in the final stages of life.
Despite what most people think, pain and other symptoms actually improve as people receiving palliative care move closer to death. People in their final days and hours experience less pain and other problems than earlier in their journey.
In the final stage of life, some people do experience problems with fatigue, pain, appetite, breathing, bowels, insomnia and nausea. PCOC’s information tells us that around 5% of people experience severe distress from some, not all, of these problems. The most distressing problem reported in the final stages of life is fatigue.
How is PCOC information used?
Clinicians use the information PCOC produces to measure the effectiveness of the care they provide and to continually improve the palliative care provided to people and their families.
Where can I find more information about palliative care?
The CareSearch website provides trustworthy information about palliative care for patients, carers and families as well as for the health professionals providing their care.