“Palliative care is about quality of life” – Changing the perception during National Palliative Care Week

This year’s theme, ‘Palliative Care – It’s more than you think‘, is in line with recent data from Palliative Care Australia (PCA) that Australians don’t fully understand or want to talk about palliative care.

The survey, National Palliative Care – Community Survey Snapshot, found that 88 percent of Australians think it’s important to think and talk about wishes and preferences for care if they were to become seriously or terminally ill, however, only 50 percent have done any end of life planning.

Palliative Care Australia wants to use this special week as a national education campaign to engage the community in a conversation about the benefits of palliative care.

Chair of PCA, Professor Meera Agar, says the campaign will help Australians better understand that palliative care helps people living with a life-limiting illness to live as well as they can, by managing pain and symptoms to ensure their quality of life is maintained.

“At its heart, it is a clear and simple message; the campaign is aimed at informing, empowering and encouraging Australians living with a life-limiting illness to engage with their health care professionals early in their diagnosis, so as to live as well as possible for as long as possible,” says Professor Agar.

“Palliative care really is more than you think. It’s for anyone of any age – from babies to older adults – who have been diagnosed with a life-limiting illness, and it can be provided alongside curative treatments, or when those treatments have ended.

“All palliative care is about quality of life and helping people with a life-limiting illness live their lives as well as possible for as long as possible.”

Many Australian consider palliative care as a “last resort” service, however, understanding what palliative care is can empower individuals to talk to their doctors early in their diagnosis so they can live well and comfortably for as long as possible.

It is estimated that 40,000 Australians receive palliative care, but there are at least another 40,000 Australians who would benefit from palliative care treatment.

The survey found 76 percent of Australians would ask for palliative care for themselves or a family member when diagnosed with a terminal illness, yet the evidence shows that Australians don’t understand what palliative care entails so they don’t access it in a timely manner.

Additionally, many Australians find it difficult to bring up the subject of death and planning for end of life, especially if it would upset family.

Around 54 percent of survey respondents believe that their family will be upset if they talk about death, dying or end of life planning, and 48 percent found the subject of death and end of life planning too difficult to talk about.

During National Palliative Care Week, home care provider, Home Instead, released five tips for helping families to support their loved ones who request palliative care.

Karen Conte, Home Instead Franchise Owner and a registered Palliative Care Nurse of 30 years, says, “The one guarantee we all have in life, is that we are eventually going to die. 

“Whilst it can be an emotional and challenging topic to discuss, advance care planning generally reduces stress for those approaching the end of their life and it allows families to rest-easy, knowing their loved one’s end of life wishes are honoured.

“As a society, we generally don’t think about or discuss death, and National Palliative Care Week is designed to shine a light on the important conversations that should ideally be had, when someone is at the end of their life. 

“My best advice to families is to listen to and recognise your loved ones’ feelings, as this empowers them and gives them dignity during their final days.”

In light of National Palliative Care Week, Home Instead has released a list of their top 5 tips to help families best support their loved ones who require palliative care:

1. Plan ahead – Discuss what the ideal end of life for you looks like and ensure your loved ones understand and are comfortable.

2. Get affairs in order – Make sure your, or your loved one’s personal preferences are finalised in writing before losing the capacity to do so.

3. Budget for the cost of care – There are a variety of medical costs that need to be considered when you or a loved one enters palliative care.

4. Pain and symptom management – Communicate with your loved ones to get the most appropriate medical professional or medication so you can have a pain-free experience.

5. Self-care – Implement self-care during what can be a stressful or distressing time. Make sure to TREAT yourself – Talking to loved ones, Rest, Eat a nutritious diet, Accept that you may need to ask for help, and dedicate Time to planning, supporting others and preparing yourself for grief.

Visit the National Palliative Care Week campaign website to get a clear understanding and more information of what palliative care is, who it is for, who can provide it, and where palliative care can be provided.