Managing misconceptions.
The main myth about a children’s hospice is that it’s just for the end stage of life.
Which leads to the next main myth. That is, that supporting children living with a life limiting illness is intensely dark and sad.
“People often say to me, about my work: ‘Oh that must be terribly sad’, said Katie Moore, Chief Medical Officer at Very Special Kids, Malvern, Victoria.
“But what matters to our children and their families is to give the children joy, to give their lives meaning, and to give them a sense of fun and thriving.”
“The children might be living alongside a life-limiting illness for years. So our focus is not just on the end of their lives, but the living of their lives.
“And you need to remember our children bring immense joy, meaning and beauty to others lives as they experience happiness in their own.”
Very Special Kids House provides respite, and a range of other supports. It’s a paediatric palliative care facility, a bright home-away-from-home. It offers music and art therapy. It has a wheelchair-accessible playground, a hydrotherapy pool. And most important of all, a resident therapy dog called Jaffa.
After a long life of service from the 1990s, the old site was reinvigorated and a new purpose built Very Special Kids House was officially opened on Tuesday, November 21.
“Our architect has created a wonderful light-filled house with a light-filled courtyard, and connective sculptures,” Katie said.
The kitchen’s at the heart of the hospice.
“When you walk in, there’s a beautiful open area, with a kitchen at the heart of the hospice. Just like a warm home environment. People can sit around the table, whether parents or staff. It’s very democratic, not sterile and clinical,” Katie said.
“The bedrooms are as close to a child’s bedroom as possible, with the safety mechanisms needed, such as equipment to help lift the child off the bed. But we’ve tried to hide the intrusive elements as much as possible. For example, the oxygen is hidden behind panelling, behind the bed.”
The approach to a child’s final days is very holistic at Very Special Kids House. It complements the usually long relationship that has built up with the child and their family, through for example, the respite care that has been offered over the years.
“We are there right from the beginning of the diagnosis, until the end of life. And we offer after death care,” Katie said.
“Our after-death care suite is in a private part of the building. The child’s body can stay there for several days after the child dies. It includes parent accommodation and a beautifully designed child’s room, that they can decorate how they wish, stay and say their goodbyes.
The room can be cooled, and cooling blankets are used.
Extended family could say their goodbyes.
“One family recently stayed for about six days in the suite. Their child died in hospital but his body came back to Very Special Kids House, so that family, including extended family, could say their goodbyes. They found it really nurturing and gentle,” Katie said.
“And one family who were able to utilise the space said they didn’t know such a space existed.”
“Our bereavement care continues after the child dies. We have a whole range of supports for our families, from formal counselling, to sibling and family camps and art therapies.
Paediatric hospice not as common as needed.
Hospice Manager Kirsty Blair says she was a little surprised to discover that paediatric hospice based palliative care isn’t as advanced in Australia as it is in her home country, Scotland.
We also have Bear Cottage in Sydney, Hummingbird House in Brisbane, and a new children’s hospice is planned for Perth. But this total of three-four is small, given the size of our population and the long distances Australians have to travel to reach a service, she observed.
As manager she must create the hospital teams to provide constantly improving services and implement the best of new ideas, whether in nursing, music therapy, occupational therapy or other allied health care.
“It’s my job to identify gaps and make the improvements necessary.”
Because Very Special Kids is the only hospice in her state she takes feedback from all over Victoria, as she improves what it can offer.
“And it shows there’s a need for the model of children’s hospice to expand. Not just in Victoria but across the whole of Australia,” she said.
Find out more about Very Special Kids at https://www.vsk.org.au/
About Bear Cottage: https://bearcottage.schn.health.nsw.gov.au/
About Hummingbird House: https://hummingbirdhouse.org.au/
Read about Western Australia’s children’s hospice plans: https://cahs.health.wa.gov.au/Our-services/Childrens-Hospice-Project
Read our article about Australia’s pioneering Adolescent Hospice in Sydney, the only one of its kind. This is for 15-24 year olds. https://good-grief.com.au/the-manly-adolescent-and-young-adult-hospice-opens/