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Culturally and linguistically diverse palliative care patients’ journeys at the end-of-life

Published online by Cambridge University Press:  04 June 2018

Anna Green Open the ORCID record for Anna Green [Opens in a new window] ,
Natalia Jerzmanowska ,
Safrina Thristiawati ,
Marguerite Green  and
Elizabeth A. Lobb
Anna Green
Affiliation:
Faculty of Health, University of Technology Sydney, Australia
Natalia Jerzmanowska
Affiliation:
Department of Palliative Care, Calvary Health Care Kogarah, Sydney, Australia
Safrina Thristiawati
Affiliation:
Department of Palliative Care, Calvary Health Care Kogarah, Sydney, Australia
Marguerite Green
Affiliation:
Department of Palliative Care, Calvary Health Care Kogarah, Sydney, Australia
Elizabeth A. Lobb*
Affiliation:
Department of Palliative Care, Calvary Health Care Kogarah, Sydney, Australia Cunningham Centre for Palliative Care, Sacred Heart Health Services, Darlinghurst, Australia School of Medicine, the University of Notre Dame, Sydney, Australia
*
Author for correspondence: Professor Elizabeth A. Lobb, Calvary Health Care Kogarah, 91-111 Rocky Point Road, Kogarah, New South Wales, 2217, Australia. E-mail: [email protected]
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Abstract

Objective

To understand the clinical and psychosocial journey of culturally and linguistically diverse (CALD) palliative care patients.

Method

This study was conducted at a subacute hospital with a specialist palliative care unit and a community palliative care service in a metropolitan region of New South Wales, Australia. Medical records of 100 deceased patients from CALD backgrounds over a 12-month period from 2014 to 2015 were recorded on a data mining tool. The cohort had transitioned to either community or inpatient palliative care services with a life-limiting illness. We used descriptive statistical analyses to identify the patients’ end-of-life journeys in the physical, psychological, spiritual, and social palliative care domains. Staff case notes were used to enrich the quantitative data.

Result

The most common symptoms burdening the patients were decreased mobility (82%), pain (76%), and poor appetite (60%). The majority of patients (87%) were diagnosed with cancer. Language was a major barrier to the assessment and management of symptoms. The vast majority of patients were born in Europe and Asia. Twenty-nine percent of the patients preferred to use English. However, among patients who required an interpreter on admission, only 9% used professional interpreters. Family distress around patients’ lack of food consumption was prominent, along with provider concern when this led to families “force feeding” patients. Only 5% of files documented patients’, and 21% of files documented families’, cultural wishes or needs. Care of the body after death was only documented in 20% of files.

Significance of results

The increasing cohort of older people from CALD backgrounds will have significant implications for the planning and delivery of palliative care services. There is an emerging need to address the physical, psychological, spiritual, and social palliative care domains in the end-of-life journeys of patients from CALD backgrounds to ensure the provision of quality care.

Keywords

Culturally and linguistically diverseCALDpalliative care
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 2 , April 2019 , pp. 227 - 233
Copyright
Copyright © Cambridge University Press 2018 

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