Oral Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2017

Doing better at ‘Difficult Discussions’: Australian Oncology Professionals’ perspectives on End-of-Life communication with adolescents and young adults with cancer (#98)

Ursula M Sansom-Daly 1 2 3 , Claire E Wakefield 1 2 , Lori Wiener 4 , Holly E Evans 1 2 , Brittany C McGill 1 2 , Pandora Patterson 5 6 , Leigh Donovan 1 7 , Donna Drew 1 , Afaf Girgis 8 , Rob Sanson-Fisher 9 , Antoinette Anazodo 1 2 3 , Richard J Cohn 1 2
  1. Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  2. School of Women's and Children's Health, The University of New South Wales, Kensington, NSW, Australia
  3. Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospitals, Randwick, NSW, Australia
  4. Pediatric Oncology Branch, National Cancer Institute, Bethesda, MD, United States
  5. CanTeen Australia, Sydney, NSW, Australia
  6. Cancer Nursing Research Unit, Sydney Nursing School, The University of Sydney, Sydney, NSW, Australia
  7. Lady Cilento Children’s Hospital, Brisbane, QLD, Australia
  8. Centre for Oncology Education and Research Translation (CONCERT),, Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, UNSW, Sydney, NSW, Australia
  9. School of Medicine & Public Health, University of Newcastle, Newcastle, NSW, Australia

Aims:

Adolescents and young adults (AYAs) with cancer face complex psychosocial and medical challenges.1-3 AYAs report wanting honest conversations around their illness.4-6 Supporting age-appropriate conversations about end-of-life topics, at the right times, is critical.4-6 There is currently no best-practice guidance for communication of end-of-life topics with Australian AYAs with cancer, and evidence indicates that current practices could be improved.3,7-9 We explored the perspectives of healthcare professionals (HCPs) caring for AYAs with cancer, to better understand and improve the quality of current end-of-life communication practices.

Methods:

Semi-structured interviews were conducted with a range of HCPs from paediatric and adult sectors, including medical, nursing, and allied health staff who had cared for at least one AYA with cancer who had died. Interviews focused on perceived barriers and facilitators to high-quality end-of-life communication, and preferences for improving current practice.

Results:

Twenty-seven HCPs were interviewed (82% females; mean age=42 years, SD=9.09). HCPs represented a range of disciplines and experience (mean years practising=17, range=5-30) and most had cared for >15 AYAs who died from cancer (74%). Most HCPs reported experiencing some anxiety about facilitating end-of-life conversations (70%). The two most frequently reported barriers to high-quality, timely end-of-life communication with AYAs were an excessive focus on treatment (n=9; 33%) and a lack of support from patients’ families (n=8; 29%). The most frequently-reported facilitators were having a structured tool (n=6; 22%) and pre-established honest communication with patients (n=6; 22%). HCPs frequently indicated that the clinician best-placed to facilitate these conversations was whomever the AYA had the best relationship with, regardless of discipline (n=15, 55%). 

Conclusions:

Australian oncology HCPs are highly engaged and motivated to support end-of-life conversations with their AYA patients. The lack of consensus around 'when' is the optimal time to introduce these issues reflects the complexity of developing and implementing gold-standard practices in this area.

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