Palliative care – who is missing out?

People with dementia and heart disease are least likely to receive specialist palliative care and only about 15% of people in rural and remote areas receive timely palliative care. 

These are key findings by the Australian Institute of Health and Welfare (AIHW), with palliative care advocates saying the data highlights “a distressing lack of access to the symptom control, and social and emotional support palliative care offers”. 

The research reveals the benefits of palliative care for those with a terminal diagnosis but also highlights a distressing lack of access to symptom control, and to social and emotional support.

What is palliative care?

Palliative care aims to prevent and relieve suffering and improve the quality of life of people and their families facing terminal illness. 

Care can be delivered by a wide range of health and community providers. It is not limited to any specific condition, and it can be delivered at any stage of illness.  

The AIHW data fills in gaps in our knowledge about people with life-limiting conditions and their access to quality palliative care. 

Palliative Care Australia (PCA) says the study paints a more detailed picture of the barriers to palliative care services and who is missing out. 

Key findings (based on 2019-20 data)

• 80% of all expected deaths in Australia each year need palliative care for illnesses including cancers, kidney failure, liver failure, dementia, and heart disease. That’s almost 110,000 people per year, or 2,000 people a week. 
• 62% of all people who need palliative care did not receive specialist palliative care. 
• People with dementia and heart disease are least likely to receive specialist palliative care, while people with cancer are most likely. 
• Those in major cities are more likely to receive timely specialist palliative care than those in rural and remote areas. In some of these communities, only about 15% of people with a life-limiting illness received timely palliative care. 

Palliative Care Australia CEO, Camilla Rowland, said while not all people with a terminal diagnosis require specialist palliative care there is room for much improvement. 

“We also know access to and understanding of palliative care within primary health and aged care – where non-specialist palliative care could be delivered effectively – needs to be much better.”  

She said the AIHW data also pointed to the positive impact and power of palliative care when people can access it: 

• The overwhelming majority of palliative care patients report better outcomes with pain and symptom management, and psychological and spiritual needs, after palliative care intervention. 
• The overwhelming majority of families and carers of people with a life-limiting illness felt their own problems improved or remained low with support from palliative care services. 

Spirituality and palliative care

While the AIHW study provides valuable information about the successes and gaps in the nation’s palliative care delivery, it does not attempt to assess another crucial area of care: patient spirituality. 

Palliative Care Australia and Meaningful Ageing Australia have joined forces in ensuring spiritual care is an integral part of palliative care. 

These bodies affirm that “Spirituality is the way we seek and express meaning and purpose; the way we experience our connection to the moment, self, others, our world and the significant or sacred. 

“Spiritual care occurs in a compassionate relationship. It responds to our search for meaning, self-worth, and our need to express ourselves to a sensitive listener.” 

Here are the important spiritual care factors to consider:

• A palliative approach includes spiritual assessment, and the involvement of appropriately trained staff.  
• There are gaps in understanding about spirituality and spiritual care across the community, including among aged care staff and organisational leaders. 
• Further education and specific funding is needed for spiritual care practitioners to function as part of the team in the palliative approach. 
• Religious and spiritual beliefs can affect decision-making about treatment, medicine, and self-care as well as expectations of, and relationships with, health and aged care service providers. 
• Individualised spirituality-based interventions can lead to lower depression scores and reduced anxiety. 
• Cross-disciplinary palliative care is required to address psychosocial and spiritual needs at end-of-life in long-term care settings. 

More information about palliative care and practical resources and assistance is available here. 

This article was originally published by our friends at National Seniors.