It's Palliative Care week in Australia. This important reflection from Palliative Care Australia's CEO:
By DR YVONNE LUXFORD
Think ahead (hopefully a long way ahead) to your last days. How do you want to go? At home, surrounded by family, in a specialist hospice with an expert team keeping you comfortable?
If you’re anything like me, you spend half your life making plans and choices – from the type of coffee you like to kickstart your day, location of your next holiday, to where you want to live, and how you’ll save for your kids’ future. Why is it then that we leave something as important as our end of life care to chance? Are you one of the 50% of Australians who haven’t spoken to our loved ones about what we would want?
Palliative care is all about providing the best quality of life at the end of life. Of course it’s about managing physical and emotional pain and discomfort, but it’s done in a holistic way with a genuine focus on the individual. People with a terminal illness and their loved ones tell us palliative care provides them with a level of support that they simply hadn’t expected – it truly does help them to live well until the end. What worries me is that it comes as such a surprise to people that this is the type of care they can, and should, expect.
None of us want to deal with the situation faced by T, who struggled to fulfil her father’s dying wishes. Apparently unbendable hospital rules led to T’s father being transferred from a nearly empty rural Queensland hospital, where he was gently dying close to the community he loved, to a nursing home an hour’s drive away. His community priest drove to visit him but had lost the nursing home address. Despite knowing the priest well, the hospital would not divulge the nursing home details, and the priest did not arrive in time. However, T was with her father the whole time, giving both of them great comfort. But T’s grief and sense of mistreatment of her dad will take a long time to heal.Memories of the care of the dying remain with those left behind.
I recently met a lovely NSW woman whose father-in-law was adamant he wanted to die at home. He spent his final weeks in his own bed, surrounded by bustling family activity. And love. Family meals were shared at his bedside, games of cards were played across his feet, and the little kids staged concerts for his “entertainment”. He was kept comfortable with the advice and support of a palliative care team, who gave practical advice about what to do when the time came. He slipped away peacefully in the middle of the night with his beloved wife holding his hand.
Now it goes without saying that caring for a dying loved one is very, very stressful. But knowing what they want ahead of time can make a difficult situation that little bit easier.
We need to tell our loved ones what we want, where we want to be cared for, who we want with us, what medical treatment we would prefer to pursue or not to pursue. A recent Palliative Care Australia survey showed that of those who had shared their end of life care wishes, 9 out of 10 had their wishes respected. Don’t rely on chance – sit down and tell your loved ones what you want. Have the conversation now, and make it clear who you want to make decisions about your care if you can’t.
People ask me if it’s depressing working in this field, but that just tells me that I’m not doing my job well enough. The focus of palliative care isn’t death and dying, it’s life! Palliative care is all about helping people live as well as possible until they die – recognising what capacity they have and building upon it, and acknowledging their preferences and values. It’s also about caring for the carers and other loved ones to ensure that their journey is as supported as possible.
I would love to think that all Australians with a terminal illness and their loved ones could access palliative care, or health professionals skilled in a palliative approach, as required. But they can’t. People encounter barriers due to their location, their diagnosis (you are more likely to be able to access palliative care if you have cancer than other illnesses), their ethnicity, and the knowledge base of both themselves and their health professionals.
Palliative care is not an exclusive club centred around terminal care. It’s a vital service that should be demanded by everyone with a terminal illness – whether delivered through specialist palliative care, or a primary care team delivering generalist palliative care or a palliative approach.
There is no question about it. Palliative care is everyone’s business.
Dr Yvonne Luxford is the CEO of Palliative Care Australia. For National Palliative Care Week this week, PCA have launched their new initiative MyTribute where you can write and post a memoir for the ones you love and have lost. If you would like to create a memory for your loved one, please visit the My Tribute website here to make a tribute and share it via social media.