Not just for the elderly or those days away from the end, palliative care helps individuals and families spend their final chapter in a way that honours their wants and needs. From the 21 to 27 May, National Palliative Care Week, Australians are encouraged to take some time and think about what the end of their life would look like if they were given the choice.
With a message of Matters of Life and Death, this year’s campaign aims to highlight the importance of end-of-life care and bring the conversation to the forefront of national conversations. The team at Palliative Care Australia hope that by breaking down the tough conversations around end-of-life, we can step closer towards accessible end-of-life care for all Australians.
This year’s National Palliative Care Week launched last night, Monday 22 May at Parliament House with a world premiere screening of Live the life you please. The emotionally-driven documentary tells just a few of the unique stories of the palliative care journey. A mother determined to try to be with her daughter as long as possible, a young family visiting a respite stay and a husband in a handbag are among those who share their personal stories.
Through moments of laughter and tears, we see stories of love, lives well lived and people closing their books in their own ways. One of these stories is shared by Dr Mark Boughey, Deputy Director of the Centre for Palliative Care, and Director of Palliative Medicine at St Vincent’s Hospital, Melbourne who has dedicated his career to hospice and palliative care. However, in the documentary, he tells his personal journey through palliative care with his long-time partner, Leonard. Although he had long been involved in the respite and palliative care movement going through the process offered him a deeper understanding of the important role it plays.
“It is about making people feel safe so they feel their voice can be heard, their voice can be understood and we reflect our care as to the things they would see important to themselves” Dr Boughey says “I think that really honed that truth to me, I really understood why it was important for me to connect and be part of the palliative care movement,”
Palliative Care Australia, CEO Camilla Rowland says that death is the last taboo subject left in our society. She asks why if we can openly talk about sex, mental health and anything else that comes to our minds can’t we discuss death and dying? One thing she wants everyone to take from the film and do this National Palliative Care Week is to be open with those around us.
“Talk to your loved ones and talk to your families. That if you had a life-limiting illness or they had a life-limiting illness, what would be your plan? How would you want to live until you died?”
Australian of the Year, Professor Samar Aoun, says that death is a social event with a medical component. The professor believes in a time where we are more globally connected than ever before, we have never been more locally disconnected.
“We’re not talking to our families enough, we’re not asking about their values and choices and therefore they are dying in a way that is not what they want,”
Towards the end of life, only 5 percent of the time is spent with health care practitioners says the fierce advocate for person-centred, end-of-life care. As the co-founder of South West Compassionate Communities network, Professor Aoun says the community has an important role to play in end-of-life care. While she believes we are lucky in a country with amazing clinicians, they cannot replace interpersonal connections.
“No one else is going to replace that care, love, support, friendship that people want. That social connectedness that they need… We need to prepare the community better to understand it is their role to do this, to work hand-in-hand with palliative care services to deliver the practical and social support,” says Professor Aoun.
Wanting to flip the narrative that palliative care is just for the last week or two of someone’s life, that entering palliative care means you are about to die. Ms Rowland says contrary to this belief palliative care comes in and out of people’s lives potentially from the time of diagnosis of a life-limiting illness. She says care doesn’t just help people choose how they want to die; it also helps them choose how they want to live with their remaining time.
Learn more about the end-of-life options and National Palliative Care Week events via; palliativecare.org.au
Find out more about Live the life you please via; livethelifeyouplease.com
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