Alstonville High student Anthony Barling battled cancer for 20 months before succumbing to the disease at 17.
In some ways his mother, Jan Barling, was better prepared than most. A mental health nurse for almost four decades, she now lectures on the subject at Southern Cross University.
Despite this, she said she felt vulnerable and at the mercy of a health care system that fails to meet the needs of young adults with cancer.
“Anthony was treated in seven different hospitals from Sydney to Brisbane, most often in adult wards, with much older men suffering unrelated medical problems.
“It wasn’t very pleasant and made me realise how fragmented and isolated young people and their family members are as they go through cancer. We never connected with any other families going through the same experience and Anthony never connected with any other young people in hospital.”
Dr Barling has labelled these adolescents and young people overlooked by the health care system as the ‘lost tribe’.
Her experience with Anthony became the catalyst for an exploration of other families’ grief and trauma at losing a young family member to cancer, for which Dr Barling was awarded a PhD from Southern Cross University last month.
She dedicated the PhD to Anthony. Next month – November – is the 10th anniversary of his death.
“You’ve got to be able to do something with the energy from grieving and turn it into something positive that’s going to make a difference to other people,” said Dr Barling.
She interviewed individuals and families from around Australia, most often face to face, to weave together 21 stories for her thesis, ‘From Go to Woe: Family members’ stories of adolescents and young people living with and dying from cancer'.
“Because they knew I was a mother of a dead son, these people were honest with their stories and some are powerful,” said Dr Barling.
One young girl received her treatment in a four-bed ward alongside three adult men. Another, a young man, was traumatised by seeing blood spilling onto the floor of the ward when an old man next to him haemorrhaged severely.
“At the other end of the scale, young people are placed in the children’s ward and forced to watch Hi-5. That’s no place for them either,” she said.
Dr Barling’s narrative work is divided into two sections: treatment and dying.
Her initial research revealed a lack of information about the psycho-social needs of young people with cancer and their family members.
Some families admitted to Dr Barling that their child’s dying could have been better handled.
“During the treatment phase the family copes with the pain and anguish because hopefully the outcome is going to be positive. But if treatment fails, it’s watching the trajectory of the dying.”
Most wanted to be with the young person at the time of death and those who were given the opportunity to care for the loved one after death found this experience healing.
“Hospital staff are used to dealing with older people who are dying, that’s a natural progression,” said Dr Barling. “But when it’s a young adult it can be difficult for hospital staff. Nurses are human like everyone else.”
On a positive note, in cases where the health system had opened up dialogue around death and dying the young person and their family made informed choices.
“For example, where young people made their own funeral arrangements it was so much easier for the parents because they knew their child was getting what they wanted.”
Dr Barling admits reliving her son’s death in the process of writing the PhD was profoundly sad but ultimately cathartic.
“I am hoping these stories will contribute to improvements in the health system as well as lessen the suffering. All people who go through the cancer journey suffer but young people have different needs and different expectations.”
She plans to turn the PhD into a book.
“Unfortunately in our culture people don’t want to hear about death and dying. A book would be a useful way to share these stories more widely to help families who confront similar situations in the future.”
As they’ve done every year since 2002, Dr Barling and her husband Bruce are planning a celebration in November to mark Anthony’s passing.
“We’ve decided this one will be the last. It’s time we experience our grief more privately,” Dr Barling said.
Photo: Dr Jan Barling.
Media contact: Sharlene King media officer, Southern Cross University Lismore, 02 6620 3508 or 0429 661 349.