Paediatric Palliative Care, it's your right
There are never enough hours in the day when a child requires round the clock care. But for families like three-year-old Maxim’s, Paediatric Palliative Care has given them precious time to spend together.
Parents Annie and Mike’s lives were changed forever when their son was born with level-five cerebral palsy. Due to his condition, Maxim is confined to a wheelchair and needs support to maintain his head and neck position. He also lives with epilepsy, microcephaly (a rare neurological condition in which an infant's head is significantly smaller than children of the same age and sex), and other complex health conditions.
Caring full-time for Maxim, or Maxie as he’s affectionately known, comes with its challenges. With two older children, eight-year-old Eliza and five-year-old Theo, Maxim’s parents are often stretched thin which takes a physical and emotional toll on the family.
This is when they turn to the Sydney Children’s Hospitals Network’s (SCHN) Palliative Care teams and Bear Cottage.
“Maxie’s condition has changed our lives completely but it’s especially tough on his big brother and sister. The biggest impact it has on us is time, there are never enough hours during the day,” Annie said.
“When we first heard about palliative care, my heart sank. I didn’t understand what it was all about or what it meant for Maxie and our family, it was very difficult news to take in. It was only when the neurologist explained about Bear Cottage and what it was all about, that I realised how life changing it would be for our family.
“The Palliative Care teams at the Network have made a world of difference to our journey with Maxie. They’ve offered support and respite when we need it, which has been reassuring and helpful for the whole family through the most difficult times. It has been a lifeline for our family.”
Maxim is one of about 270 children who are cared for by our Network’s Paediatric Palliative Care service each year.
Palliative care is provided as a service at both Hospitals as well as at Bear Cottage, the state’s only children’s hospice. It provides care and support to patients and families while in hospital, as outpatients, and in some circumstances, at home.
Palliative care involvement may occur from the point of diagnosis and guides children and their families through their journey - from negotiating the medical system, helping them live well, and when death is certain, supporting them through end-of-life-care, bereavement and beyond.
What matters most in paediatric palliative care is not just supporting the patient but caring for the entire family.
“Palliative care can reframe hope and assists to define goals of care that focus on good quality of life,” Dr Martha Mherekumombe, Senior Staff Specialist in Palliative Care, said.
“People often think a referral to palliative care means the child or young person will die sooner. Contrary, emerging evidence demonstrates that children and young people who receive palliative care live better and live longer – and that is what we aim to achieve.”
Dr Rachael Kermond, Palliative Care Fellow at SCH, added medical teams will refer to palliative care knowing the service offers an extra layer of support to the child and their family – helping maximise their quality of life.
“Our service aims to ensure all our kids can make the most of life, and their families can create lasting memories that are far beyond their illness.”
This year’s theme for National Palliative Care Week (22-28 May), ‘It’s Your Right’ seeks to raise awareness about the rights of all Australians to access high-quality care when and where they need it – just like Maxim and his family have received.
Since 2019, Maxim and his family have visited Bear Cottage for respite. Maxim has also stayed at the hospice unaccompanied, allowing his family to take a break together.
“Knowing Bear Cottage could care for Maxie, it allowed me to do simple things such as taking Eliza and Theo to see Frozen or to help Eliza with her schoolwork,” Annie said.
“Bear Cottage gives our family a place to reset, relax and forget about the tough stuff for a while. It means a week of sleep, and precious time to spend with Eliza and Theo. Sometimes it’s nice to just sit with the kids and colour in, or squish playdoh together. We don’t get time to do these things as often as I would like.”
Annie also enjoys the little luxuries of having meals prepared for them, having the opportunity to talk to other families in similar situations and knowing they can hand over Maxim’s care for a short time and not have to worry.
“Arriving at Bear Cottage and knowing that Maxie is in the best possible place to be cared for means we can relax and just be a family,” Annie said.
National Palliative Care Week is an important time to raise awareness and increase understanding about the benefits of palliative care. It’s also an opportunity to share the stories of our palliative care teams and showcase the difference they make to children with life-limiting illness and their families.