Caring and Cultural Difference
When caring for dying people in pain and from a different cultural background, it can be difficult to discern the quality of care-giving.
How to judge the appropriateness of care? What changes should be made to accommodate different beliefs and values? What about cultural differences in gender inequalities? Here are some examples of how care practitioners have described situations of social pain at the end of life for migrants.
The following extract is from a group interview with palliative care social workers where they talk about some of the challenges of intercultural palliative care:
Anna: I was working with a young woman in East London who was dying and she'd specifically said "I do not want my body to be returned because I want what little money there is to stay here with my kids". But the culture says that her body must go back and so there's a huge wrangle going on within the family now, and the men will win because the men in the family always get their say. Um, but I was thinking how it touches me as a worker...And I was thinking that's often a conflict, you know, is it that I only respect other cultures' attitudes so long as it doesn't impinge on my own values, which are that, you know, that the kids are more important and they should benefit...
Jane: And that's a very difficult one isn't it? Where I have the right to my own views, that I think this is wrong and how do I check? How do I know that I think this is wrong because I am being racist? or that I think this is wrong because it is wrong (laughs), and this is just such a fine thing...(you) often actually can't be sure of. But equally you can't culturally relativise everything out of existence and say "Yes. That's OK", because it isn't OK...But it just feels difficult.
Some practitioners have likened the challenge of working between their professional knowledge and the unknown of cultural difference as walking a tightrope. And yet good care always involves some risk-taking. Might there be other ways of understanding and experiencing the high wire? Jeanette Winterson
I live in the space between chaos and shape. I walk the line that continually threatens to lose its tautness under me, dropping me into the dark pit where there is no meaning. At other times the line is so wired that it lights up the soles of my feet, gradually my whole body . . . and I see then the beauty of newly created worlds, a form that is not random. A new beginning
Jeanette Winterson, The World And Other Places, New Ed (London: Vintage, 1999), 14.
Reading between the lines
Melanie, a white British hospital nurse says that she is never sure that she understands the depth of a person's experience. She has an inkling that social differences and her professional authority as a nurse affect what her patients tell her. She told me this story of a Jamaican patient who wanted to be buried in Jamaica:
…she [the patient] said ‘when I’m buried in the ground and my spirit
comes up I want to see the sunshine and I want to see familiar people,
people who know and love me’. She was wanting to not offend me, I think
she said ‘there’s nothing wrong with this country, but it’s not the same
warmth’ and it wasn’t just the physical warmth of the sunshine.
What is interesting about this story is how Melanie moves beyond a literal interpretation of her patient’s wishes to begin to think about the pain of dislocation: of what it might be like to die in a ‘strange’ place, far away from those who love you. She also seems to recognise how differences between patients and practitioners can make the telling of such stories difficult. Yet, despite this uncertainty and conscious incompetence, Melanie does not withdraw from listening to her patient.
Themes from Melanie’s story echo throughout the poem ‘Tropical death’ by Grace Nichols (1984), a Guyanese-born British poet. The poem, from the collection ‘The Fat Black Woman’s Poems’ uses a dialogue between the ‘Fat Black Woman’ and the poet/narrator to convey multiple heritages and belonging.
Tropical Death begins with the stanza ‘The fat black woman want/a brilliant tropical death/not a cold sojourn/in some North Europe far/forlorn’. It is through talk about the weather that ambivalence is felt, caught between the heat and cold, so that the renewed ‘brilliance’ of a tropical death comes out of a present ‘cold sojourn’. In the last verses of the poem, the past opens up through the encounters between biographical and cultural memory that in other poems in the collection evoke the catastrophes and suffering of slavery in the Middle Passage and the plantation.
In the heart
of her mother's sweet breast
In the shade
of the sun leaf's cool bless
In the bloom
of her people's bloodresr
the fat black woman want
a brilliant tropical death, yes
Cultural competence is an approach to teaching and caregiving that is aimed at helping practitioners to provide culturally responsive care. You can hear Natalie Evans explain more about cultural competence in her podcast.
Focusing on the central role of cultural knowledge in cultural competence models, in an article in the Journal Mortality, I have argued that contemporary policy and pedagogical approaches to caring across cultural difference can undermine equity and erode responsibility for emotional and moral thinking through their attempts to simplify and control the threat of the unfamiliar. In this sense, I have seen cultural competence as possessing many of the characteristics of what the sociologist Anthony Giddens has called an ‘abstract system’. For Giddens, abstract systems are a consequence of modernity’s drive for control amidst accelerated social and technological change and the increasing complexity of institutional frameworks. At their most basic, abstract systems, shored up by expert knowledge, serve to defend against threats to ‘ontological security’. They do this by promoting routinised practices that codify and regulate behaviour, thereby removing from social (and personal) life, events and experiences that demand emotional and moral deliberation. A process that Giddens calls the ‘sequestration of experience’.