Clinicians struggle to not get personally involved when caring for adolescents and young adults with incurable cancer, an Australian study shows.
While survival rates for adolescent cancers in Australia now approach 90%, oncologists and other clinical staff still face major emotional and mental challenges when providing palliative treatment for young people with incurable cancers, interviews with 14 staff at the Victorian Adolescent and Young Adult Cancer Service have revealed.
Conducted by researchers at the Peter MacCallum Cancer Centre, the interviews with cancer specialist doctors and nurses found that many experienced feelings of sadness, guilt and a sense of failure when a patient died.
Some staff also said they lacked confidence in their ability to relate to young people with incurable cancer, particularly when they first started in the position.
‘‘There is limited formal training on cancer in adolescents and young adults and nothing on palliative care, this makes this work more challenging,’’ said one nurse.
‘‘Even working on the adolescents and young adults team, I struggle at times with knowing what to say [and] how to approach the more sensitive conversations. There’s no ‘rule-book’ or set of instructions. It can be difficult,” a cancer specialist told the researchers.
Younger staff found it especially difficult to manage their personal feelings and maintain professional boundaries.
“Caring for a young person is more challenging when you’re of a similar age … it’s easy to forget that they’re your patient … to let your guard down,” one nurse said.
Communication was seen as a key to the best management of young people with cancer, but this was often difficult due to insufficient time in busy clinic environments or lack of organisational training or briefings.
One allied health clinician described caring for adolescents in palliative cancer care as “confronting and very difficult without much support”.
Several staff also expressed a need for formalised support structures and better use of multidisciplinary teams to share skills, communication and decision making.
The need for backup and emotional support from colleagues was also a commonly expressed theme for people dealing with adolescents with incurable cancer. But in addition to the informal support given by talking to senior staff the respondents also saw formal support mechanisms in the workplace as important.
“I debrief informally with my colleagues. There’s no formal arrangements,” said one staff member.
“The emotionally taxing nature of adolescent and young adult palliative care was strongly evident across all disciplines but in particular, for younger nurses. Together with a limitation in formal support mechanisms, there was strong consensus for greater organisational commitment to promoting self-care,” the researchers noted.
They said their findings provided a starting point to explore ways to support clinician in managing the emotional burden of adolescent cancer care as well as enhance the delivery of care to young people with a life-limiting cancer diagnosis.
The study is published in the Journal of Adolescent and Young Adult Oncology.