Serious illness, death, and dying at any age is difficult territory for our society. Children and young people at the end of life stirs much deeper feelings and thoughts.
Rather than shy away from those natural responses, Australia’s first ‘Paediatric Palliative Care National Action Plan’ boldly seeks to raise awareness of the issues and drive better access to palliative care for these special people in all our lives.
Launched by Assistant Minister for Health and Age Care, Ged Kearney on Monday, 24 July at Very Special Kids, Melbourne, the Action Plan is a roadmap that guides the way children and young people with life limiting conditions and their loved ones are supported.
“At the heart of the Action Plan is a real commitment to seeing the child or young person as the individual they are and encouraging the active total care of body, mind and spirit, as well as supporting loved ones,” says Camilla Rowland, Chief Executive Officer, Palliative Care Australia.
Recent data tells us there are currently around 30,000 people aged between 0 and 21 years, living with a life limiting illness in Australia who would benefit from palliative care.
“When you add family and friends to the picture, the ripple effect of paediatric palliative care extends to many more thousands of people,” Ms Rowland says.
Funded by the Australian Government over three years as a partnership between Palliative Care Australia and Paediatric Palliative Care Australia and New Zealand, the Action Plan draws on extensive patient and family input.
The families who took part did so as part of their children’s legacy, many seeing the experience as giving added purpose and impact to short lives.
“In sharing our stories, we are contributing to ensuring that others walking the path behind and beside us are cradled and carried through the journey safely and with care,” one parent said.
Eighteen recommendations form the backbone of the Action Plan, including measures that deal with quality, access, information sharing, collaboration, data and research.
“Investment from governments and the sector is needed, however, much of what is outlined can be achieved by health professionals and services as part of their own clinical development,” Ms Rowland says.
Launching the Action Plan at Very Special Kids, Victoria’s only children’s hospice, adds weight to the occasion.
“Very Special Kids opened Australia’s first children’s hospice more than 25 years ago. At the time, there was little consensus on how best to provide clinical, emotional and practical support to children and young people with life limiting conditions, and their families,” says Michael Wasley, Chief Executive Officer, Very Special Kids.
“To come full circle and host the launch of the National Action Plan at our newly rebuilt world-class facility, which will soon reopen to Victorian families, is a real honour.”
Building on the Action Plan project, funds for a new paediatric palliative care project were announced in the May 2023 Australian Budget.
“We are just scoping out what that looks like now and hope to work with Minster Kearney on further funding that enhances paediatric palliative care for all who need it, wherever they are,” Ms Rowland says.
Download the Action Plan at https://paediatricpalliativecare.org.au/resource/the-paediatric-palliative-care-national-action-plan/
A snapshot of paediatric palliative care in Australia:
28,976 children and young people (0-21 years) were estimated to be living with life-limiting conditions in Australia in 2021. Note: The actual number remains unknown due to a lack of readily available national data. The evidence to support planning and service delivery is limited
Children under the age of 1 year are the biggest cohort of patients (around 300 children per 10,000 people), followed by 4-6yrs, 1-3yrs, 19-21yrs, 16-18yrs, 13-15yrs, 10-12yrs, and 7-9yrs (all between 25 and 40 children or young people per 10,000 people). Bowers A et al. (2020)
38% of life-limiting conditions in children and young people are cancer related. Bowers A et al. (2020)
Aboriginal and Torres Strait Islander People have higher prevalence of paediatric life-limiting conditions. Bowers A et al. (2020)
The proportion of children with a life-limiting condition who have complex needs is estimated to be around 38%. Palliative Care Australia (2018)
Unlike adult patients, paediatric palliative care is generally delivered over a longer time frame – on average, it’s about 40% longer than for adults. Connor SR et al. (2017)