'Nicholas' palliative care room for teens opens at John Hunter Hospital

IT’S almost a decade since 14-year-old Nicholas Butters lost a courageous battle with cancer, but the spirit with which he lived is never too far away.

It was there again on Thursday in Newcastle’s John Hunter Children’s Hospital where the doors were swung open on the new Nicholas Room.

The first of its type in an Australian acute treatment hospital, the room is specifically designed for teenagers undergoing palliative care.

The Nicholas Trust, established by his parents Jenny and Craig shortly after Nicholas’s death, was instrumental in establishing the new room, thanks largely to a $100,000 donation from the Newcastle Permanent Charitable Foundation.

The trust has raised well over a million dollars since Nicholas’s death, and has established other palliative care rooms at Maitland, Tamworth and Taree’s Manning Base hospitals, but none with the specific purpose of the Nicholas Room.

‘‘We have found that many families prefer to conduct end-of-life care within a Nicholas Room rather than at home, so we try to make the rooms as comfortable and welcoming as possible for families,’’ Jenny Butters said.

‘‘This room is only the third palliative care room for adolescents in Australia and the first to be located within a hospital with immediate access to specialists and paediatric palliative care staff.’’

At yesterday’s official opening, the hospital’s palliative care specialist Dr Sharon Ryan said the new room adds some comfort to what is usually a very stressful time for young teens and their families.

‘‘The room has space for parents to stay in hospital with their children, decreasing distress caused by separation during end-of-life care,’’ she said.

‘‘This time spent supporting their child is a great gift and one that families can cherish for many years.’’

Sadly, almost 400 children and teenagers are suffering from terminal illness in the Hunter and northern NSW regions every day. Not long after the Nicholas room opened on Thursday, it was hosting its first family.