This National Palliative Care Week (24-30 May) we’re debunking the misinformation surrounding palliative care and highlighting the importance of accessing palliative care early in your journey to help you live your best life possible, for as long as possible.
Palliative care is often misinterpreted to be just end-of-life care, however, it’s perhaps better described as quality of life care. It is designed to enable you to live your life to the best of your ability by identifying your physical, emotional and social needs and wishes.
For people living with lung disease or lung cancer, talking with your healthcare team and your loved ones about palliative care and your needs and wants can help you to live as comfortably and as fully as possible.
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.”
Lung Foundation Australia Respiratory Care Nurse, Amanda Curran says it’s a real misconception that palliative care is just about those last few days or weeks of life and is a service that is only engaged for planning end of life care.
“Palliative care is about improving your quality of life by managing symptoms, helping with communication, assisting in navigating the numerous decisions that can evolve when faced with a life-limiting illness, and providing family support.”
Amanda says for people living with an active, progressive or advanced illness, having a conversation early in your journey about palliative care can make a big difference.
“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. The important thing is that you have the conversation early,” Amanda said.
“We understand these kinds of topics of conversations can be challenging and upsetting to navigate but having these discussions early can actually make you and your loved ones feel more comfortable and prepared for making difficult decisions when the time comes.”
To find out more about palliative care for people living with lung disease or lung cancer, including helpful resources and links, click here.
Connect to support
The Lung Cancer Support Nurse provides a telephone-based service for patients, their families and carers at any stage of their lung cancer journey.
The Lung Cancer Support Nurse is a highly experienced oncology nurse who can provide evidence-based information regarding diagnosis, treatment, symptom management and well-being, in addition to guidance about relevant support services.
To arrange a telephone appointment with the Lung Cancer Support Nurse, complete the form, here.
The Respiratory Care Nurse telephone service is available for people living with Chronic Obstructive Pulmonary Disease or bronchiectasis. Our skilled nurse can provide guidance on all aspects of your condition according to the management guidelines.
The Respiratory Care Nurse aims to connect you with the information and support to live well with your lung condition. The service offers three telephone appointments over a few months to ensure you receive the support you need.
Please contact our Information and Support Centre to make a booking with the Respiratory Care Nurse, on the freecall number 1800 654 301.