Introduction and aims Patient experiences at life’s end remain poor, especially with regards to discussing and planning death.1Adolescent and Young Adult (AYA) cancer patients represent an important demographic with unique needs. Unfortunately, little is known about the extent of Advance Care Planning (ACP) within this group.2 The aims of this study were to determine what, if any, ACP occurred with AYA patients and whether preferences for care/death were met.
Methods A retrospective case note audit was conducted of all AYA cancer patients known to the Principal Treatment Centre in Birmingham, UK, who died between 2013 and 2019. Patients whose care was provided by children’s services were excluded. Case notes were scrutinised for evidence of ACP, involvement of palliative care services, and place of death. Data were entered into an Excel spreadsheet for analysis.
Results 84 AYA patients (64% male) met the inclusion criteria. 57% of primary diagnoses were oncological; 43% haematological. Evidence of ACP was recorded in the notes of 67% of patients. ACP discussions were facilitated by oncology/haematology doctors in 61% of cases and by palliative care specialists in 23%. 29% of patients died on a dedicated AYA cancer unit within a specialist tertiary care centre, 26% died at home, and 12% died in hospice. Place of death reflected a patient‘s ACP in 42% of cases.
Discussion and conclusions Our results demonstrate inconsistent ACP amongst AYA cancer patients. Many patients died in their preferred setting, but almost one third of case notes showed no evidence of ACP. The reasons for this are not clear. Nor is it appreciated whether the topics of death and dying were broached at all in this patient group. Further research is urgently called for to help AYA patients feel more empowered and understood as they approach the close of life.
Leadership Alliance for the Care of Dying People, 2014. One Chance to Get it Right. London: UK Government. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf [Accessed 28.02.20]
Sansom-Daly UM, Wakefield CE, Patterson P, Cohn RJ, Rosenberg AR, Wiener L, and Fardell JE, 2019. End-of-life communication needs for adolescents and young adults with cancer: recommendations for research and practice. Journal of Adolescent and Young Adult Oncology ahead of print http://doi.org/10.1089/jayao.2019.0084
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