Palliative care is more than just end of life care; a better description may be quality of life care. This National Palliative Care Week (23-29 May) has the theme, Palliative Care: It’s more than you think, to encourage the community to think differently about palliative care.
Lung Foundation Australia Respiratory Care Nurse Amanda said there was a common misconception that palliative care was simply about the last few days or weeks of a life, and that it only concerned planning end-of-life-care. But there are many stages of palliative care, which helps people with a serious or life-limiting illness, and their families, to manage symptoms and improve quality of life.
“You may need to engage palliative care from diagnosis, or you may choose to take it up once your illness progresses to a certain stage,” Amanda said.
“This week is a chance to further work on changing the perception of what palliative care is all about and to talk about the benefits.
“Feeling nervous about starting difficult conversations is a very normal response, particularly when talking about the subject of death and end-of-life planning. But having discussions early can help you and your loved ones to plan and, most importantly, let your loved ones and healthcare team know your exact wishes.”
Palliative care is there to enable you to live life to the best of your ability, and as comfortably as possible, by identifying your physical, emotional and social needs.
When Ken’s wife Dale was diagnosed with Stage IV lung cancer, the couple knew it was important to talk about what Dale would want at each stage of her journey. Ken says having those conversations as early as possible ensured both his family and Dale’s healthcare team could honour her wishes right to the end. Now Ken, who lives with Chronic Obstructive Pulmonary Disease, is applying all those principles to his own journey.
“It’s important to bring palliative care in as soon as you possibly can. It doesn’t mean you’re just about to die. People can engage with palliative care at any stage of their journey,” Ken said.
“We found there was a huge gap in actually being linked in with palliative care early on so sometimes you have to be proactive. We didn’t know who to talk to and it was difficult to know where to go to find advice.
“Once we connected with our local palliative care service, they provided us with all the support services we needed, nurses would come out and make sure Dale was comfortable and had whatever help she needed to deal with what was going on physically, mentally and emotionally.”
Ken says completing an advanced care directive is a great way to start what can be a difficult conversation with family about your preferences for your future care, including palliative care.
“I’ve just redone mine and they’re pretty tough questions, like when do you want to continue living. But having it in place with Dale really helped everything flow beautifully, there was no kerfuffle, no arguing about who’s decision it was. We knew what Dale wanted and we honoured that,” Ken said.
“It’s about making it easier for family, friends and loved ones. It’s hard enough dealing with losing a loved one without having to make really difficult decisions at the time.”
New medication listing
From 1June 2021, the Palliative Care Schedule (PCS) will include new and amended listings for opioid medications. Criteria restricting use for palliative care patients undergoing cancer treatments, and requirements for annual review of opioid use, have been removed. More on the PBS here
Connect to support
Lung Cancer Support Nurse
Our Lung Cancer Support Nurse can assist patients, families and carers at any stage of their lung cancer journey. To arrange a telephone appointment, complete the form, here.
Respiratory Care Nurse
Book a phone appointment with our highly skilled nurse who can provide guidance for those living with Chronic Obstructive Pulmonary Disease and bronchiectasis. Book an appointment here.
These groups are a chance to connect to people in a similar situation, to share practical tips and to help break down the sense of isolation that can often be experienced. More here