HOME BASED PALLIATIVE CARE FOR CHILDREN

Guest Blog by Dr John Collins

Throughout the world, the preferred location of care for children receiving palliative care is  home for the majority of the time. At times hospital and hospice care are needed, but most families desire to be at home with their children, or close to home, for as long as possible. Home is where families feel most empowered to be themselves in their ordinary routines, with a minimum of rules and regulations. Home better supports the needs of siblings in their ordinary routines to attend school, for example. Home also better supports the needs of an extended family to visit and offer support.

HOME BASED PALLIATIVE CARE FOR CHILDREN

The story of Charlie compellingly reveals not only the beauty of Charlie, but also that of his parents Liz and David, and sister Alysia as his carers at home. The love and joy of this family shine in the way they care for Charlie and also each other in so many practical ways in their home environment.

Home care, however, may present great challenges for some families. These may include catering for the extensive care needs of the child with little external help or support. Additional support is frequently needed to support children in their own homes and to cater for the needs of all family members.

The privilege afforded to us all working in paediatric palliative care is not only the opportunity to reach out to each other, often in small ways, to some of the most vulnerable in our community and their families, but also the opportunity to be strong advocates for improved support of children receiving palliative care at home.
Editor’s Note: Please consider supporting the the Children’s Palliative Care program at the Children’s Hospital at Westmead https://support.bandagedbear.org.au/palliativecare