Around 20 children in the ACT receive palliative care each year, and that number, sadly, could increase as the region’s population grows, says Tracy Gillard, interim CEO of Palliative Care ACT.
On Thursday, the charity published a toolkit about children’s palliative care – the fifth in an annual series, released in National Palliative Care Week each year.
“Palliative care for children is quite a confronting topic for anybody, but a really important one to know about,” Ms Gillard said. “When a child is in palliative care, it’s a challenging, emotional time for the child and their immediate family … [and] for the people around them who love those people.”
- Not just the end, Palliative Care Week launches in Canberra (23 May)
- Canberra home to Australia’s first non-clinical respite facility (29 April)
The toolkit is aimed at families and friends who are close to a family with a child who has a life-limiting illness (i.e., reduces their life expectancy). It is meant to start conversations, Ms Gillard said, and is not expected to provide all the information.
It busts some common myths about palliative care; provides advice, divided into four stages (introducing palliative care; palliative care when active treatment is still happening; when end of life care begins; and after-death care for the family); and offers helpful hints and links to local resources.
It suggests ways to make meaningful memories with the child – from excursions to the zoo, horse riding, camping, and milestones like school dances to simple activities like making candles or bookmarks, or building a cubby house.
It also has a space to write reflections. “When people are in emotional times, it’s important to reflect on how they’re feeling, not to shy away from that, but also to embrace it and talk about those feelings,” Ms Gillard said.
ACT health minister Rachel Stephen-Smith launched the toolkit, which she considers a valuable resource for the local region.
“The level of stress that parents, carers, and their families experience in caring for a child with a life-limiting illness is unimaginable for the rest of us,” the minister said. “But with the right resources, knowledge, and support, we can help children and families who are facing serious illness to live their lives to the fullest with dignity and respect, finding as many moments of joy as possible.”
Dr Louise Mayo AM, Palliative Care ACT Board president, said families face challenges when a child is diagnosed with a life limiting illness.
“The child, family and close friends are often in shock and there are always appointments, treatments, and procedures to consider. Under the palliative care umbrella, our local health teams – doctors, nurses, physiotherapists, occupational therapists, and social workers – come together to deliver holistic care not only to the child but to the whole family.”
Palliative care starts when a family is ready for it to begin, often offered in the home, where support workers are guided by parents or guardians who know their children best.
“During a challenging and emotional time, many children understand the world around them, but can’t properly express their fears,” Dr Mayo said. “Starting conversations early can help them understand why so many new people, such as healthcare professionals, are suddenly a part of their life.”
While there are no permanent specialist palliative care physicians in the ACT, Ms Gillard said, doctors regularly come down from Sydney. Two part-time paediatric palliative care nurses provide “wonderful support, advice, and connectivity” for families.
Clare Holland House, Canberra’s only hospice, does not have a specific space for children, and there is no other child-centric clinical overnight respite available. Leo’s Place, Palliative Care ACT’s non-clinical respite accommodation, can cater for families, although guests must be over 18 to stay unaccompanied. The Stella Bella Little Stars Foundation provides financial assistance, family support, and childcare for families with a child with serious and long-term illnesses.
- Home-like palliative care funded at Leo’s Place in Canberra (25 July 2022)
Copies of the toolkit are available on Palliative Care ACT’s website, and in hardcopy by calling their office on 02 6255 5771.
Previous toolkits are about palliative care in the workforce, cultural approaches to death and dying, and palliative care consideration for LGBTQIA+ people.
