Few aspects of caring for the ageing are so widely misunderstood as palliative care. That’s why we’ve provided a quick guide to palliative care to help you understand what it is and what it isn’t. Palliative care is for anyone suffering a life limiting illness, regardless of their age of state of health.
Here are some of the many myths about this caring process: palliative care is the beginning of the end, that it hastens death, it is only available in the last few days of life, you must be in a hospital to access it and that palliative care means that you doctor has given up.
Wrong, wrong, wrong.
So what is the truth about palliative care?
The truth is that palliative care is about living well. It is for our loved ones, of any age, suffering a life-limiting illness who have little prospect of recovery. Its goal is to allow people to live as comfortably as possible. According to Palliative Care Australia, in addition to the 40,000 Australians receiving palliative care, it’s conservatively estimated that at least a further 40,000 people would also benefit from it.
Even though one in three Australians have had a family member who has received palliative care, the treatment needs demystifying.
What does palliative care treat?
The care is person and family-centred and, beyond treating physical symptoms, also ministers to emotional, spiritual and social needs. It can be provided in hospital, or a hospice, nursing home or family home.
It might be as simple as providing emotional support after a bout of painful surgery.
It might be coming up with a treatment plan for a long-term illness. It might be for patients with cancer, or dementia, or motor neurone disease, but it is not just providing care during the final stages of life.
Usually, patients are treated by a team, which includes doctors, nurses and allied health professionals. This can include physiotherapists, psychologists and social workers. And, if you are helping to look after your ageing parents, you can be part of the palliative care team.
Starting conversations about death
Part of palliative care can include difficult conversations about death. These can be sad, but important. The more we learn about end-of-life options, and prepare for death, the easier it is on the ones we leave behind. Plus, it reduces stress on everyone.Starting early is the best way to take control. Many patients express a wish to die at home, so having an advanced care plan/ advanced care directive is desirable. Dying at home can depend on the type of illness, support in the community and ability of family members to provide care.
Looking after your mental health
Seeing a loved one so ill and then their death can have a huge impact on your own mental health. Your palliative care team can help.
In addition, here is a list of useful phone numbers outside of the palliative care system that or your loved ones can call:
Australian Centre for Grief and Bereavement – 1800 642 066
- Beyond Blue – 1300 224 636 (available 24 hours a day)
- Kids Helpline – 1800 551 800 (available 24 hours a day for young people aged 5 to 25)
- Lifeline – 13 11 14 (available 24 hours a day)
- MensLine Australia – 1300 789 978 (available 24 hours a day)
- Parentline – 1300 301 300
Do you need to apply for palliative care?
The good thing is palliative care is available to everyone and is easy to access. Often a referral from your parent’s GP is all you need, if they’re not already in the hospital system.
After death
Everyone deals with death differently. Your palliative care team can also help family after a loved one’s death with access to grief counselling and bereavement services. Most area health services have a bereavement services team, so ask your palliative care team for a referral (or you can also speak to one of the services listed above).
Some useful links
Carers’ Circle article answering common questions people have about palliative care – Palliative care – living well while dying – https://carerscircle.com.au/2023/05/21/palliative-care-living-well-while-dying/
Palliative Care Australia has many resources, including the Palliative Care: It’s more than you think website and the National Palliative Care Service Directory The directory provides information about specialist services and providers, community support organisations and services.
As well as many useful fact sheets for carers, the PCA also provides a National Register of Palliative Care Consumers and Carers, a collective body of knowledge from those who have lived with palliative care.
Other very useful information is provided by the Department of Health.
https://www.health.gov.au/health-topics/palliative-care/about-palliative-care/how-to-get-palliative-care
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