'Death is difficult in any language': A qualitative study of palliative care professionals' experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds
Green, A., Jerzmanowska, N., Green, M., & Lobb, E. (2018). 'Death is difficult in any language': A qualitative study of palliative care professionals' experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds. Palliative Medicine, Online First.
Background: Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care.
Aim: To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture.
Design: An emergent qualitative design, informed by theoretical and procedural direction from grounded theory research.
Setting/participants: Four focus groups held with palliative care staff (n=28) in a single specialist palliative care service in Australia.
Results: The following themes emerged: 1) determining the rules of engagement around discussion of diagnosis and prognosis; 2) navigating the challenge of language to patient understanding; 3) understanding migration experiences to establish trust; 4) maintaining the balance between patient safety and comfort care; 5) providing a good death experience through accommodation of beliefs; and 6) navigating the important role of family members while privileging patient preferences.
Conclusion: Underlying provider perceptions of caring for patients was that death is difficult in any language. Care was conceptualised as considering cultural and linguistic backgrounds within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group.
Culturally and Linguistically Diverse; Palliative care; Health professionals; Qualitative