Barbara Hayes1, Anne Marie Fabri1, Maria Coperchini2, Rafatullah Parkar3 , Zoe Austin-Crowe4
1 Northern Health, Bundoora Extended Care Centre, 1231 Plenty Road Bundoora, Vic, 3083. email@example.com
2 Western Health, Footscray Hospital, Gordon Street, Footscray, Vic, 3011
3 Monash Health, Kingston Centre, 400 Warrigal Road, Cheltenham, Vic, 3192
4 Department of Health & Human Services Victoria, Continuing Care, 50 Lonsdale Street, Melbourne, Vic, 3000
Background: Australian health services have growing numbers of people from culturally and linguistically diverse (CALD) communities but they are largely under-represented in advance care planning (ACP) research.
Methods: This qualitative study builds on an earlier pilot study, to increase understanding of cultural issues relevant to ACP and end-of-life decision-making, from the perspective of interpreters. Participants are hospital-employed interpreters from five Melbourne metropolitan health services, participating in one-to-one semi-structured interviews. Interpreters have extensive experience of witnessing discussions about treatment limitations and end-of-life, for the cultures they interpret for, and also personal experience of a culture. Interviews explored how people, within the interpreter’s language group: discuss death and dying; make health decisions at end-of-life; and respond to ACP discussions.
Results: Thirty-nine interviews (including six pilot interviews), covering 22 language groups have been completed. Audio-taped interviews have been transcribed and analysed thematically, using open and axial coding. Three major themes are identified: (1) diversity within linguistic culture; (2) moral difference; (3) health and death literacy
Findings identify diversity in how medical decision-making, and planning for future illness and deterioration, might be valued. Factors were reported to include: time in Australia; education; access to new information and ideas; and religion. Some people were described as avoiding, or fearing, planning ahead; others identified God as the decision-maker, and destiny as predetermined or not to be interfered with. Lack of knowledge about health, health systems, potential harms of medicine, chronic dying, and death were reported factors for how end-of-life decisions are approached.
Conclusions: Findings caution against stereotyping but increase understanding of how people from CALD communities might respond to ACP and end-of-life discussions. Respectful engagement with a person’s values and beliefs is important. Assessing and addressing health knowledge and death literacy is a pre-requisite to any decision-making, including ACP. Death literacy should not be assumed.
Dr Barbara Hayes is the Clinical Leader for Advance Care Planning at Northern Health, which has a culturally and linguistically diverse patient population. She has an in interest in ethics related to end-of-life decision-making, including CPR decisions. She has previously worked for many years in Palliative Medicine