Towards the end of 2017, Ozcare’s Nursing Team on the Gold Coast were involved with the palliative care of Ben, an exceptional 17-year-old young man who had been diagnosed with a malignant tumour at the start of the year.
Ben underwent many treatments for his condition and the secondary malignancies that developed, but his disease continued to progress.
Ben was referred to Ozcare by Paediatric Oncology at Gold Coast Hospital for palliative support, and together with a Paediatric Clinical Nurse and a Consultant from Specialist Palliative Care Service at Robina Hospital, a collaborative approach was developed to care for Ben at home during his final months.
Ben had many issues with bone pain and control of other symptoms which at times meant novel approaches were utilised to achieve maximum comfort. He was also on exceptionally high doses of pain relief and associated medications and ultimately had three continuous subcutaneous infusions in place.
Determined not to let the cancer interfere with his important life events, Ben created his ‘Bucket List’ which included attending his Year 12 School Formal, Graduation, 18th birthday celebrations with friends, a helicopter flight with his dad and many other wishes, the majority of which he achieved.
Ben was always in control of his care pathway and was determined not to go into hospital, but to remain at home. The collaboration of health professionals and the support of his family and friends meant that Ben was able to live fully and die peacefully at home with grace, humour and determination, cared for by the people who loved him.
Ben is still demonstrating the value of communicating and engaging with young people with cancer by sharing his story, as he requested his health professionals to do. His family are also extremely supportive of his story being shared with the wider community.
Ozcare’s Janice Morton, Clinical Nurse, Michelle Noyes, Paediatric Clinical Nurse, and Dr Joanne Doran, Palliative Care Specialist, have delivered presentations within Queensland Health, and their work was recently recognised as the ‘Best Poster of the Day’ at the Global Adolescent and Young Adult Cancer Congress in Sydney at the end of last year.
Ben’s story demonstrates the significant impact health professionals can have on end-of-life care outcomes by taking a collaborative approach to meet individual needs.
Everyone involved in Ben’s care acknowledges that he was an exceptional young man who has left a lasting impression.