Research indicates that introducing palliative care earlier can lead to improved symptom management, enhanced quality of life, and better coordination of care. It can also provide crucial emotional and psychological support for the person and their family by helping to navigate and prepare for the challenges of living with a progressive illness like Parkinson’s.

The Myths of Palliative Care

  • “Palliative care hastens death”
    Palliative care isn’t about speeding up death. With a holistic approach, palliative care considers the person living with Parkinson’s as a whole, focusing not only on pain and symptom management but also on emotional wellbeing, preparing for changes and loss, and overall quality of life as identified by the person and their family.
  • “You can only receive palliative care in a hospital”
    Palliative care can be incredibly flexible. While it is available in hospitals, it is also provided at home, in aged care facilities, or hospice settings. The focus is on creating a comfortable and supportive environment that meets the person’s and their family’s needs, wherever they wish to be.
  • “It means my doctor has given up on me”
    Palliative care is a signal that your healthcare team is prioritising your comfort and quality of life. It’s not about giving up; it’s about offering compassionate and comprehensive supports that focus on your wellbeing, and personal preferences.
  • “Palliative care is just for cancer patients”
    While cancer patients benefit greatly from palliative care, it’s also available for those living with other life-limiting conditions, such as heart failure, respiratory diseases, and incurable neurological conditions like Parkinson’s.
  • “Palliative care is only for the last few days”
    This is a common misconception. Palliative care can be introduced early in the journey, alongside other early intervention therapies and medical treatments. Palliative care works with a multidisciplinary team to help people navigate complex healthcare needs. It’s not just about end-of-life care—it’s about living well, even at the most challenging times.

Palliative care teams are skilled at helping the person living with illness and their families to express what’s most important to them in terms of their care and the location of that care. They offer guidance on treatment decisions, ensure comfort, and connect families to grief and bereavement support when the time comes.

Moving beyond the stigma

Embracing palliative care is not a sign of giving up. For people living with Parkinson’s, having someone from palliative care on your care team can complement treatments and support both the person and their loved ones throughout the journey. It’s about living as well as possible, for as long as possible.

By starting the conversation early and involving a palliative care team member from the outset, you’re taking an important step toward better managing symptoms, improving quality of life, and ensuring that your care is aligned with your values and preferences.

If you’re ready to learn more about how palliative care could support you or your loved ones, talk to your care team. They can provide information and guidance on accessing palliative care services, which may be accessed through your general practitioner (GP).

For more information about palliative care and resources, please visit www.palliativecare.org.au.

Information kindly written by Palliative Care Australia. You can find our co-developed resources on the Parkinson’s Australia information hub including the Palliative Care & Parkinson’s booklet, Advance Care Planning, Self-care for the Carer and more: https://www.parkinsons.org.au/information-hub/palliative-care/

 

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