Cultural diversity, advance care planning and end-of-life decision-making

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.  barbara.hayes@nh.org.au
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.


Biography

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

About the Association

The Australasian Association of Bioethics and Health Law (AABHL) was formed in 2009.

It encourages open discussion and debate on a range of bioethical issues, providing a place where people can ask difficult questions about ideas and practices associated with health and illness, biomedical research and human values.

The AABHL seeks to foster a distinctive Australasian voice in bioethics, and provide opportunities for international engagement through its membership, journal and conferences.

Members come from all the contributing humanities, social science and science disciplines that make up contemporary bioethics.

Many members have cross-disciplinary interests and all seek to broaden the dialogues in which all members of the wider community ultimately have an interest.

The AABHL is a supportive, creative and challenging community that provides a rich source of continuing academic refreshment and renewal.

Conference Managers

Please contact the team at Conference Design with any questions regarding the conference.

Photo Credits: Tourism Tasmania, Sean Fennessy, Luke Tscharke, Jess Bonde, Richard Strong, Jason Charles Hill,

© 2015 - 2016 Conference Design Pty Ltd