‘It's different from my culture; they’re very different’: providing community-based, ‘culturally competent’ palliative care for South Asian people in the UK
Box 1 Definitions of palliative care
• Palliative care is when there is no longer a cure for a patient who has a life-threatening illness, and therefore, you control their symptoms and give them a better quality of life until they are at the end of their life, really.
• Well, I suppose my interpretation is giving the patients what they want within our limitations, you know. I did hear a quote once, but I can't think – I'm trying to think of the actual quote, I think it was –‘I can't change the cancer in the man, but I can change the man that has the cancer.’
• The word – palliative –[in palliative] care was based on the word palliare, which is Latin, meaning ‘to cloak’. So you’re just masking the symptoms … But also, you’re dealing with the rawness of it all; the raw emotions and everything that's happening, and it's not just that one person, it's all the aspects of the person and everybody who deals with them as well, their family, their friends, it covers a wider area.
• Yes, it's standing back and watching, and making sure that, you know, the patient's not in pain and the patient's not suffering because of that … so you know, you've just got to be there with them.
• Within the palliative setting, we’re looking to alleviate the symptoms and make the patient's life as comfortable as possible, with a view to their death being comfortable and the family as well being supported if possible.
Abstract
This article investigates the challenges faced by those trying to develop ‘culturally competent’ palliative care for South Asian cancer patients in Luton, UK. It discusses the findings of a phenomenological study of service providers’ attitudes to and experiences of caring for South Asian patients. Ten semi-structured in-depth interviews were carried out with a range of staff who work in home and community-based palliative care settings, including nurses, community liaison personnel and representatives of non-statutory organisations. The authors begin by considering how these service providers construct ideas of cultural difference and how these relate to philosophies of palliative care. They then examine attempts to deal with cultural diversity in everyday practice, focusing in particular on the social context of care in the home. The paper considers the ways in which staff attempt to incorporate the cultural needs of patients, family, kin and community. Rather than criticising current working practices, the authors highlight the complexity of delivering culturally competent services from the perspective of those working directly with patients. In doing so, they contribute to ongoing debates about the development of anti-discriminatory practice in health and social care.
