Dying to Know Day, held on 8 August, aims to encourage all Australians to talk about death by promoting conversations and community actions around death, dying and bereavement.  

When asked, the great majority of Australians (70–80%) say they would prefer to die in the comfort of their own home. However only 16–20% manage to fulfil this wish.

Thinking about end of life and the transition to palliative care is challenging for patients and their loved ones to discuss. Patients from culturally and linguistically diverse (CALD) backgrounds may need extra support as they can experience challenges around language and cultural values, and isolation from the broader community.

Mater researcher Dr Phillip Good, a staff specialist in palliative care, is tackling these issues head on. He was part of a collaborative team that explored key experiences and perspectives of CALD patients and their caregivers undergoing oncological or palliative care treatment.

A key theme that occurred in the interviews was the lack of understanding of the concept and meaning of the term – ‘palliative care’. In many languages there is no equivalent term for ‘palliative care’, and the majority of participants experienced difficulties in understanding the meaning and consequences of this term.

Some patients even confused palliative care with ongoing ‘active’ treatment, and believed that a return home may indicate the onset of the dying process. This led some to believe that staying in hospital meant a hope for recovery.

Talking about death and dying, or terminal illness was frequently associated by participants with ‘giving up’ or hastening death. Some participants understood death to be more likely to happen, or more likely to happen quickly, if openly acknowledged, verbalised or discussed.

For some patients their religious faith complicated their relationship with their doctor’s expertise and authority, as they believed that God knows best, or would intervene and assist their healing.

Dr Good’s research has provided additional insight into the experiences of CALD patients and their caregivers. In particular how they manage the challenges that occur when their beliefs about treatment, death and dying; the language difficulties they face; and communication around diagnosis, prognosis, pain and symptoms, all meet in consultation with clinicians. 

For clinicians, understanding these complex dynamics is important for communicating, establishing trust and making decisions with both CALD patients and their families.

“Greater attention is needed to develop effective communication skills to acknowledge the cultural, linguistic and spiritual needs, and acknowledge the unique nature of each doctor patient interaction.” Dr Phillip Good says.

The research was recently published in the journal BMC Palliative Care - 10.1186/s12904-018-0343-z