A long-term misconception that palliative care is only for cancer patients may be preventing people with non-malignant chronic diseases from receiving the care they need, peak health bodies have warned.

Palliative Care Australia (PCA) CEO Liz Callaghan said while palliative care had historically focussed on providing symptom control and support for people with cancer, it was now available on the basis of need, rather than diagnosis alone. Ms Callaghan said PCA had long recognised the impact of chronic illness, which is why ‘Living Well with Chronic Illness’ is focus of this year’s National Palliative Care Week (22-28 May).

“Four out of five deaths in Australia are caused by chronic illness, but there is a misconception that only cancer patients can access palliative care,” she said.

“People often have more than one chronic illness which affects their health in different ways. Many don’t realise that palliative care can help people with chronic illnesses to live well. Early access to palliative care can help them have a better quality of life.”

A recent report from the Australian Institute of Health and Welfare showed that while cancers remain the leading disease group, in terms of disease burden (19%), cardiovascular diseases ranked a close second (15%). Among disease that caused the biggest burden were coronary heart disease, chronic obstructive pulmonary disease (COPD), lung cancer and dementia.

The report, Australian Burden of Disease Study-impact and causes of illness and death in Australia 2011, explained “Burden of disease quantifies the gap between a population’s actual health and an ideal level of health in the given year – that is, every individual living in full health for an ideal life span.”

"People don’t realise there are palliative care options for people with dementia, or that they could be dying a quality death."

Alzheimer’s Australia CEO Carol Bennett said the report also highlighted dementia as “one of the leading chronic conditions of our age”, particularly among women, for whom its burden ranked third behind coronary heart disease and other musculoskeletal conditions.

Ms Bennett said dementia was the second leading cause of disease burden for men aged 85 and older, and third among those 75 older.

“I think the view that palliative care is for cancer still permeates. People know about dementia and are affected by it but they don’t necessarily know that it is terminal and that it comes in more than 113 different forms, which all have different side effects,” she said.

“They certainly don’t see dementia as a palliative disease. “

She said there was a general misperception that dementia was a normal part of aging, which worked against people with dementia receiving the long-term palliative care they needed to address pain and other symptoms, particularly when the disease affected the ability to speak.

“The consequence is that palliative care is seen as something you receive in hospital, unless you’ve got cancer. People don’t realise there are palliative care options for people with dementia, or that they could be dying a quality death. They’re just faced with the reality that they may not have access to services or know how to get good care,” Ms Bennett said.

Alzheimer’s Australia released survey findings last week which showed 90% of respondents want politicians to do more for people with dementia, and the disease has affected 70% of the population in some way.

Lung Foundation Australia CEO Heather Allan said it was important for people with chronic or non-malignant disease to have the same access to palliative care services as people with malignant disease. However, patients and doctors both found it difficult to know when to start discussing palliative care, particularly when symptoms often came on gradually and patients made lifestyle adjustments to accommodate them.

“We find patients with chronic lung disease are missing out, because they are not raising the need for supportive and palliative care with their doctors and their doctors don’t know when to raise it with these patients,” Mrs Allan said.

“Do you raise it when someone is first diagnosed? Do they raise it when they’ve stopped going out because they are too breathless?”

She said PCA and the Lung Foundation Australia had attempted to address this issue with a quality of life checklist, which helped to identify when people might need palliative care support in order to live as well as possible at home.

“We advocate strongly that patients and clinicians should be raising the subject of supportive and palliative care as early in the disease journey as possible. Sometimes it is easier to raise it before the patient is struggling with their symptoms, so the conversation can be clear and less emotional. An early conversation is always better than a conversation had at a late stage,” Ms Allan said.