Palliative Care Week
There are some words that no parent ever wants to hear. “Palliative care” are two of them but this is the reality for more than 100 families across Sydney Children’s Hospitals Network every year.
This week is Palliative Care Week and this year’s theme is “What Matters Most?”. It is an opportunity to raise awareness and understanding about palliative care not just across our Hospitals, but right across the Australian community.
When people first hear the words “palliative care” it is almost immediately associated with end-of-life care, but while it is a service for those with a life-limiting illness, palliative care is about living, not dying – and that’s what matters most.
In paediatrics, palliative care is a support network there to help guide children and families through their journey, providing support through respite care, symptom management, end-of-life care and care of the family as they move into bereavement and beyond.
For families like Isabella’s, this makes the world of difference.
Isabella and her family were first introduced to the Network’s palliative care service at the end of 2016. Born with an unspecified genetic condition, Isabella has severe physical and intellectual disabilities and relies entirely on others to perform daily tasks.
For both Isabella and her family, palliative care has meant support, therapy and advice, particularly when times get tough.
“Caring for a child with complicated medical issues can be isolating and difficult. We prefer to keep Isabella at home as much as possible however sometimes we feel we’re a little out of our depth,” Isabella’s Mum, Lynne, said.
“The Palliative Care team are able to provide us with advice over the phone and support when we need it, which is reassuring and often helps us to achieve our goal of keeping Isabella at home.”
Palliative care is a type of care that is centred on the child but also focuses heavily on caring for the entire family, individualising care to encompass the physical, social, emotional and spiritual needs of all involved.
It recognises that illness doesn’t just affect the child, but the whole family and as such, aims to enhance quality of life and maximise memories for everyone.
“Prior to needing the palliative care service, I had always thought of palliative care as a service for people who were at the very end stage of life.”
“But it’s actually about helping families to continue to live the best life possible despite their child's condition, and offering patients and their carers choices and support with their care,” Lynne said.
Across the Network, palliative care is provided as a service at both Hospitals as well as at Bear Cottage, the states only children’s hospice. The service provides care and support to patients and families while in hospital, as outpatients, and in some circumstances, at home.
For many families of children with life-limiting illness, home is where they want to spend their final days with their child and the Network’s service takes every step to try and make this possible. This includes connecting families with their local services, including community nursing, GP’s and other health providers, and also providing information and education to local services to support them in their role as primary contacts for palliative care patients.
The service also supports referrals to Bear Cottage, a home away from home dedicated to providing a place where families can spend quality time with their child and help create some lifelong memories, while receiving respite and 24 hours medical assistance.
Supported by a $6.5 million investment by NSW Health between 2013/14 to 2017/18 to enhance the Paediatric Palliative Care Program and with a feasibility process underway for Big Bear Cottage, services across the Network are hoped to improve even further over the coming years.
Palliative Care Week runs from 20 - 26 May.
Donate to help The Children's Hospital at Westmead's palliative care service.
Donate to help Sydney Children's Hospital, Randwick's palliative care service.
Donate to help Bear Cottage.