Global initiative to develop training for end of life conversations

July 24, 2018

 

A Sydney-based clinical psychologist will lead a global team of researchers to develop a training program for healthcare professionals on how to have end of life conversations with young cancer patients.

The project is being funded by the Adolescent and Young Adult (AYA) Cancer Global Accord, an international partnership between CanTeen Australia, Teen Cancer America and the UK’s Teenage Cancer Trust. Their aim is to improve outcomes for adolescents and young adults with cancer and their families worldwide.

“It’s a tragic reality that around 400,000 young people aged 15-39 will die of cancer worldwide every year,” said Dr Ursula Sansom Daly, a Post-Doctoral Research Fellow leading the Behavioural Sciences Unit’s Mental Health Research Team at UNSW Sydney, and Clinical Psychologist at Sydney Youth Cancer Service”. In Australia, sadly this means about one adolescent/young adult cancer patient dies every 3-4 days.”

“If young people with a potentially incurable diagnosis aren’t given the opportunity to have end of life conversations, they’re more likely to experience greater anxiety and physical pain and undergo intrusive procedures in their final days, and may also be less likely to die where they would want to.

“Because of how confronting it is, young people and their families can really rely on health professionals to ‘lead the way’ in talking about end of life issues and preferences. If these conversations don’t happen, this can be really isolating for the young person, and can make it even harder for surviving relatives to deal with their grief.

“That’s why training healthcare professionals to guide and facilitate age-appropriate end of life conversations for adolescents and young adults with cancer is absolutely critical,” Dr Sansom-Daly said. “What we don’t yet know, is what this kind of training should include, in order to best equip healthcare professionals to navigate these difficult discussions with young people.”

The $60,000 grant from the AYA Cancer Global Accord will be used to develop a training blueprint, which will then be evaluated with healthcare professionals and young people.

“The Global Accord partners are committed to international collaboration on innovative research into the psychological effects of cancer on adolescents and young adults,” said CanTeen CEO Peter Orchard.

“Despite being critically important, there has been little research into how best to facilitate end of life conversations, which is why all three partner organisations are thrilled to be supporting this vital project,” he added.

The grant announcement comes ahead of the 3rd Global Adolescent and Young Adult Cancer Congress being held in Sydney from 4-6 December 2018. For more information and to register, visit www.ayaglobalcancercongress.com.

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Media contact: Suzanne Riley, Head of Marketing and Communications – CanTeen

0456 214 621 / suzanne.riley@canteen.org.au