Patients, families & friends

Palliative care involves health professionals from a range of disciplines caring for your physical, practical, emotional and spiritual needs. This occurs in a range of settings including the home, aged care facilities, hospitals and palliative care units.

The main goal of palliative care is to optimise the quality of life of someone who has an active and advanced life-limiting illness. Life-limiting illnesses include a wide range of conditions. This includes, for example, advanced cancer, chronic obstructive pulmonary disease and heart disease.

The needs of people with life-limiting illnesses and their carers or families vary and assessing these needs is important. Assessment helps each individual receive the care that will be right for their circumstances, preferences and needs.   

In palliative care, a range of needs are assessed. This includes physical, psychological, emotional, social and spiritual needs.

Assessing someone twice can help work out whether needs have changed in response to the care provided. Put another way, assessing needs at two points in time can help staff know whether the care is working, and whether outcomes have improved.

PCOC is a program running throughout Australia. PCOC helps staff use tools as part of routine care to see whether outcomes improve. PCOC works with services to help continuously improve outcomes for the benefit of patients, carers and families. We also work with government representatives to help with service planning and policy. We use the information from the PCOC tools to do this.

Frequently asked questions

PCOC can tell us a lot about how and whether palliative care helps patients.

For example, PCOC information shows that, 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.

Download a graph showing the percentage of patients reporting severe distress at the beginning of palliative care and just before death (pdf)

In this graph, the blue bar is the percentage of people that experience the problem (e.g., fatigue or pain) to begin with, and the orange bar shows the percentage of people that have the problem just before their death. The orange bars are much shorter than the blue bars. This shows that less people experience distress from these problem as they receive palliative care and as they get closer to death.

The graph shows that, for example, 7% of people experience severe distress related to pain when they are initially referred to palliative care. This reduces to approximately 3% of people just before death. Fatigue (feelings of being tired) causes severe distress for around 13% of patients initially. Our information shows that this reduces to approximately 8% of patients before their death.

Fewer people experience distress from a range of problems as they receive palliative care and as they get closer to death. This includes distress related to problems involving appetite, breathing, bowels (lower part of your gut), insomnia (difficulty sleeping) and nausea (feeling sick and that you may vomit). 

PCOC can also help us work out who gets palliative care and who misses out. PCOC shows that, in Australia, about 40% of people who could benefit from palliative care receive it. This means three out of every five people that could benefit from palliative care miss out on it.

This is despite palliative care being highly effective for the majority of people. For most, symptoms and problems improve with palliative care.

Yes, PCOC welcomes the contribution of patients, their carers and families. PCOC recognises the valuable expertise and knowledge that patients, their carers and family can bring to helping to improve PCOC. Contact us for more information.

Also, most of the PCOC tools are filled in by staff. However, one of the PCOC tools is to be filled in by the person with a life-limiting illness. Taking the opportunity to complete the tool is important. It helps make sure that staff know what matters to you. It helps staff tailor your care around your needs.

Most palliative care services in Australia use PCOC’s tools. You can ask your service if they are part of PCOC or you can  to find this out.

The CareSearch website provides trustworthy information about palliative care for patients, carers and families as well as for the health professionals providing their care.

© PCOC UOW 2020. The intellectual property associated with a suite of resources on this website is owned by the Palliative Care Outcomes Collaboration (PCOC), University of Wollongong. PCOC has placed resources in the public domain and is happy for others to use them without charge, modification or development. These resources cannot be modified or developed without the consent of the University.

PCOC is a national palliative care project funded by the Australian Government Department of Health and Aged Care.