Healthcare professionals treating adolescents and young adults facing terminal illnesses like cancer often find it difficult to approach end-of-life discussions with patients and their families. However, we know that avoiding these conversations can mean worse outcomes for young patients, who are more likely to suffer from anxiety and feelings of emotional isolation surrounding their illness if their wishes for end-of-life care are not heard.
Healthcare professionals are often relied upon to initiate these conversations, but there is currently no training available to assist them in talking to young people about end-of-life. To better facilitate end-of-life discussions, the 2018 Global Accord Grant will provide funding to develop training tools for clinicians who work with adolescents and young adults with cancer. In order to develop training tools that are effective and useful for clinicians working across a range of settings, the first stage of the study will also be to benchmark current practices in end-of-life communication with young people with cancer, internationally. This international survey of healthcare professionals will feed directly into a consensus-building exercise to determine what types of end-of-life communication training diverse healthcare professionals feel is most urgently needed. We hope that the training tools we ultimately develop will provide clinicians with the confidence and skills they need to begin end-of-life discussions and improve patient wellbeing during this difficult time.
The grant, provided by CanTeen Australia, Teen Cancer America and the UK Teenage Cancer Trust, emphasises global research collaboration. Dr Sansom-Daly’s team includes 24 international researchers and clinicians from the UK, USA, Canada and New Zealand. The team will provide global perspectives on the best ways to approach end of life care conversations. Her team of local experts is joined by a number of important international contributors including Dr Lori Wiener (National Cancer Institute, USA), Associate Professor Anne-Sophie Darlington (University of Southampton, UK), Dr Hanneke Poort (Dana Farber Cancer Institute, USA), Associate Professor Abby Rosenberg (University of Washington, USA), Associate Professor Meaghann Weaver (University of Nebraska Medical Center, USA), and Dr Jennifer Mack (Dana Farber Cancer Institute, USA), among others.
Ultimately, the study hopes to develop tools that can be utilised by all types of clinicians involved in the treatment of young people with cancer. This will provide clinicians with the confidence and communication skills they need to address challenging end-of-life discussions with young cancer patients, in order to best support patients through to the end of their lives.