It’s your right: access to palliative care topic of awareness week

The annual awareness-raising week runs from 22-28 May, and Chief Executive Officer of Palliative Care Australia (PCA), Camilla Rowland, explains that National Palliative Care Week helps increase the understanding around palliative care.

“The theme acknowledges the World Health Organisation’s (WHOs) position that palliative care must be recognised as a universal right. The theme also builds on efforts here in Australia to ensure equitable access to palliative care for all, when and where they need it,” says Ms Rowland.

“Because everyone with a life-limiting illness has the right to live as well as possible, for as long as possible.”

Key to the theme this year is the misconception that palliative care is the same as end of life care.

In reality, palliative care can support a person with a life-limiting illness and their family for years before they reach the stage of needing the shorter term end of life care, and it enables them to have the highest quality of life for as long as possible.

Palliative care can include pain and symptom management, planning for medical treatment and other decisions, support for families, referrals to respite, resources for care at home rather than in a stressful or uncomfortable hospital environment, and counselling.

PCA says the misunderstanding of palliative care is causing some Australians to miss out on receiving the support they need, when and where they need it, and that’s why the theme for this year’s awareness week was chosen.

“We look forward to having more conversations in the community during NPCW about the benefits of quality palliative care,” says PCA.

“During NPCW we hope to spark important conversations in the community about the benefits of quality palliative care and celebrate the amazing dedication of all those working and volunteering in palliative care across Australia.”

Motor Neurone Disease (MND) Australia Chief Executive Officer, David Ali, says people with MND, a life-limiting condition that causes nerves to degenerate, benefit from quality palliative care.

“We encourage people living with MND to connect with palliative care soon after diagnosis, as part of a multidisciplinary approach to their care,” says Mr Ali.

“Quality palliative care ensures people live as well as possible and supports the physical, emotional and spiritual needs of a person living with MND and their family.”

MND can lead to disability as it progresses and disability supports for physical tasks like personal care or social supports to access the community can be worked into palliative care plans.

Mr Ali says it is important that people with MND and their families understand palliative care and talk about what they want to get out of services.

“Our recently released guide to End of Life Care with MND supports people in talking about end of life and planning ahead, which is vital in ensuring people’s needs and wishes are met during their palliative care journey,” he says.

People with disability, including people with MND, can access specialist palliative care teams that have more experience in disability and supports, so that their care is individualised.

Some people with disability experience barriers to palliative care and are denied their right to quality care, read more about these barriers and tips for overcoming them on the Disability Support Guide.