Palliative Care services are only accessed by a quarter of the people who could benefit from them and often as late as 72 hours before their death. Yet research shows the earlier people are supported, the better their experience of the last stage of their life. This is true for caregivers, too.
Here, we ask those close to palliative care, either professionally or personally, to share their insights on how carers can help their loved one get the most out of the service.
Access palliative care early.
Professor Kathy Eagar, Director of the Australian Health Services Research Institute, University of Wollongong, dispels the myth that palliative care is just for your final days of life:
“Palliative care is not about how long you've got to live, it's about making sure that you live that part of your life as well as possible.
Best practice is that everybody is focused on your functional abilities and the management of your pain and symptoms, from the day you're diagnosed.
So, for example, the first time you turn up at a cancer centre, you meet the palliative care doctor or nurse who says, ‘Just to let you know, we in palliative care don't just look after people who are dying, we are experts in symptom control. So, if you have any symptoms, come and talk to us’.”
Share as much as you can about your loved one, not just their physical condition.
A/Professor Leeroy William, President of the Australian and New Zealand Society of Palliative Medicine talks about holistic care:
“In palliative care, we consider the whole person within the context of their relationships and life experiences.
When other healthcare professionals just focus on the physical needs, then they're not attending to psychological needs. They're not attending to the social or existential needs. These all affect the physical symptoms and they're also missing all the other elements that actually make someone's life meaningful to them.
For example, if someone is breathless, dealing with their underlying fears and concerns will help. Reassuring them that their family is going to be looked after and supported through this process, can help the anxiety that may be contributing to the breathlessness. Sometimes this might be much better than just giving them medication."
Work on open communication with the palliative care team.
Marian, a Violet Guide, encourages caregivers to focus on communication:
“Foster an honest relationship with the person you’re caring for and palliative care staff.
Often, people have a real fear around what's going to happen and don’t speak up. Someone I supported recently didn’t ask any questions so she was really in the dark as to how far advanced her husband was. Ask questions, you get no second chances. Foster a really open and honest relationship in both directions, and that is you can ask questions of your palliative care, and they can ask questions of you.”
If you're at a loss for how to start important conversations with your loved one or with their palliative care team, reach out to a Violet Guide. Support is one-on-one, tailored to your needs and free. Click here to find out more.
Don’t be afraid to ask for what you or your loved one might need - big or small.
Lesley who cared for her friend in palliative care in 2020, wants you to know that you can ask for anything that might make the journey easier:
“I was an advocate for my friend, and that was important.
Don't be afraid to speak up. Don’t be afraid to ask for anything your loved one needs. The staff offered to help make the room more inviting by putting up family photos. Nothing was a problem for them, it was always, ‘yes, we can do that, whatever you need’.”