‘Death is difficult in any language’

THIS MONTH’S EDITOR’S CHOICE FROM PALLIATIVE MEDICINE. . .

Professor Elizabeth A. Lobb and Dr Anna Green explain the background to their longer article selected as ‘Editor’s Choice’ in the September 2018 issue of Palliative Medicine.

Prof Elizabeth Lobb

Rising population trends in ageing, chronic illness, and migration have significant implications for the provision of palliative care. These global trends have led to ageing populations within countries defined by growing cultural heterogeneity and numbers of people who do not speak the dominant language. The increase in these culturally and linguistically diverse (CALD) populations corresponds with growing recognition of the need for planning and delivery of palliative care services to address the needs of this patient group.

Palliative care teams are at the coalface of navigating the complex space of providing good end-of-life care and support to patients from CALD backgrounds.

Dr Anna Green

There has been significant development of specialist palliative care services within New South Wales, Australia. However, there is little information available at the patient level that describes how palliative care services impact on the type and quality of care provided. Using a chart audit methodology, we reviewed the clinical journeys of 100 patients from culturally and linguistically diverse backgrounds who had transitioned from acute care facilities to either community or inpatient care within our specialist palliative care service in a metropolitan region of Australia. We also asked inpatient and community palliative care team members about their perceptions of providing care to this population.

Our findings

The overarching approach to providing care was that death is difficult in any language. This reflected a perception that concerns related to approaching the end-of-life were universal and that cultural and linguistic backgrounds need to be considered 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. The findings support the use of a social-ecological approach1in the development of responsive models of care for patients from CALD backgrounds.

Conclusion

Communication is key to balancing the needs of the individual and the needs of the family in palliative care. The role of family members as intermediaries between patients and providers is in conflict with the Western medical emphasis on patient autonomy. However, conversations about how to reconcile Western ethical frameworks within palliative care with other cultural imperatives without stereotypes or oversimplification are important. Raising palliative care provider awareness of how to accommodate cultural beliefs in the provision of care should involve the tailoring of education and information in collaboration with CALD communities.

Working with family members to increase their knowledge and comfort with administration of pain relief, and addressing family distress regarding patients’ lack of appetite and food consumption, will help to minimise some of the identified barriers to care in this population.

References

1.Davidson PM, Phillips JL, Dennison-Himmelfarb C, et al. Providing palliative care for cardiovascular disease from a perspective of sociocultural diversity: a global view. Curr Opin Support Palliat Care2016; 10: 11–17.

More about the authors …

Elizabeth A. Lobb PhD, Professor of Palliative Care, Chair, Calvary Palliative and End of Life Care Research Institute, Adjunct Professor, the University of Notre Dame, and University of Technology, Sydney, Australia. Contact Elizabeth Lobb by email.

Anna Green PhD, Post-doctoral research fellow, IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, University of Technology Sydney, Australia. 

Read the full article in Palliative Medicine

This post relates to the longer article, ‘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 by Anna Green, Natalia Jerzmanowska, Marguerite Green,Elizabeth A Lobb, published in Palliative Medicine 2018 Volume: 32 issue: 8, page(s): 1419-1427. Article first published online: May 16, 2018; Issue published: September 1, 2018. https://doi.org/10.1177/0269216318776850.

How to download this article free of charge from the EAPC website.
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website. Paste this link into your browser https://bit.ly/2BWO7qX and then LOGIN or REGISTER. Or, go to www.eapcnet.eu – Choose Resources, and from the left-hand side-bar choose Clinical & CarePublications & Documents and then login or register. Remember that it’s free of charge to become an EAPC registered user.

Read earlier Editor’s Choice posts on the EAPC Blog.

 

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