End of life care for people from ethnic minorities

As ethnic minority populations age in the UK how can we ensure that they receive responsive end of life care? Yasmin Gunaratnam discusses the challenges for social work

The numbers of older people in the UK from ethnic minority groups are increasing. They are often poor, socially marginalised and face difficulties in using health and social care services. Their illnesses can result in complex care needs and long periods of ill-health.(1) Despite greater policy attention to the needs of older people at the end of their lives,(2) there has been very little discussion about the palliative care needs of older people from ethnic minorities.

The Stories That Matter project was funded by the Department of Health to raise awareness about the palliative care needs and experiences of this group of service users.(3) Managed by The Policy Research Institute on Ageing and Ethnicity (Priae), the project used narrative interviews with older people, carers and health and social care professionals to gather stories about how old age, ethnicity, culture and faith can affect experiences of life-limiting illness and care. We have used the findings to produce information for older people and to develop education and training initiatives with service providers and practitioners.

Our interviews with 33 older people and their carers showed that care choices do not simply reflect cultural traditions or individual preferences. Choices were often struggled over, negotiated and evolved in relation to knowledge about services, personal values, changing family roles and relationships, and the progression of an illness. Two consistent themes emerged across the interviews: first, many older people did not feel listened to or taken seriously by professionals; and second, information about services and advocacy was needed.

Unfortunately, feelings of not being listened to are common among all older people. What is different for elders from ethnic minorities is that these experiences can also be related to racism and negative stereotyping. Mary, an African Caribbean woman, was diagnosed with cancer 18 months after several misdiagnoses of mental illness. She said: “I was treated really badly… it’s just because they’re not looking at the right place. They’re not listening to me. They give me antidepressants and I say ‘I don’t want anti-depression tablets, I am not depressed’ and because I’m divorced with seven children, I’m supposed to be depressed, and nobody takes any notice.”

Information about services and entitlements as a means of improving access to care is a complicated issue. The phrase “going backwards and forwards” came up many times in the interviews, conveying feelings of being stuck within health and social care systems that many service users found mystifying.

This is also the case with regard to welfare benefits, where there is a need for greater signposting from social workers. Research has found that nearly half of those who died with cancer in 2001 had not claimed attendance or disability allowance, despite social worker involvement in their home and hospital care.(4)

Another less recognised aspect of access is that of low expectations. Previous experiences of poverty, different financing arrangements for care in countries of origin and social marginalisation can result in some ethnic minority elders having very low expectations. They can put up with inadequate care, because they feel lucky to be receiving any care, particularly when it is free. This was the case for Ricardo, who made repeated comparisons to the cost of care in his native Brazil and expressed extreme gratitude for his care, even with highly limited access to interpreters.

Ricardo placed a great value on compliance with professionals, stressing the importance that service users should “accept advice and do everything right”.

Information and policies aimed at empowering older people and carers as consumers of services are simply not enough for more marginalised groups. They need to be accompanied by strong advocacy to allow all older people to play an active part in enhancing their choices and experiences.

Our group interviews with 56 health and social care professionals revealed the depth of the practical, ethical and emotional dynamics of care for older people from ethnic minorities. Key concerns included:

● Feelings of fear and anxiety in working across difference that were compounded by an awareness of institutional racism and lack of knowledge about cultural and religious values and beliefs.
● The marginalisation of social work perspectives within multi-disciplinary teams.
● Inadequacies in the use, training and provision of advocates/interpreters.
● Tensions between cultural sensitivity and anti-oppressive practice, which were expressed through dilemmas in addressing tension within families from different cultural backgrounds.
● Difficulties in providing holistic care to those who do not speak English.

Although providing responsive and anti-racist care to older people from ethnic minorities can be problematic, our interviews showed the valuable contribution that social workers can make to holistic end-of-life care. Social workers can play a
critical role in co-ordinating services and support across the statutory and voluntary sectors, supporting the aims of the government’s recent End of Life Care strategy to improve patient choice and to make it possible for more people to die at
home. They can also help to address fears about palliative care services such as hospices, where misunderstanding and perceptions of hospices as “white, middle-class and Christian” can serve to restrict access.

Guidelines from the National Institute for Clinical Excellence on cancer and supportive and palliative care found that patients’ psychological symptoms are often not recognised by health and social care professionals, although at diagnosis 50 per cent of patients experience anxiety and depression severe enough to affect their quality of life adversely.

We found that social workers were valuable in providing emotional support to older people from ethnic minorities throughout a life-limiting illness, using their assessment and counselling skills to address the complex emotional relationships between illness and identity.

For example, some of the specialist palliative care social workers that we interviewed identified how the trauma of a diagnosis of illness and/or awareness of dying can bring up memories of previous traumatic experiences, such as war or racism that require specific recognition and support. Social workers can also play a part in putting service users in touch with support groups, either during an illness or in bereavement. These are resources that are highly valued by elders and carers.

At a time when access to specialist palliative care can be more limited for those from ethnic minority groups, social work skills in counselling, advocacy and anti-discriminatory practice can play a vital role in reducing inequalities and providing service users with the psycho-social support that they need.

YASMIN GUNARATNAM is a senior research fellow at the centre for ethnicity and health at the University of Central Lancashire and consultant on palliative care to the Policy Research Institute on Ageing and Ethnicity.

TRAINING AND LEARNING
The author has provided questions about this article to guide discussion in teams. These can be viewed at www.communitycare.co.uk/prtl and individuals’ learning from the discussion can be registered on a free, password-protected
training log held on the site. This is a service from Community Care for all GSCC-registered professionals.

ABSTRACT
This article discusses findings from a new project on experiences of life-limiting illness and care among minority ethnic elders, carers and health and social care professionals. It highlights the ways in which social work can support the care choices of older people from ethnic minorities.

REFERENCES
(1) Priae Research Briefing, Black and Minority Ethnic Elders in the UK: Health and Social Care Research Findings, 2000
(2) E Davies, I Higginson, (eds) Better Palliative Care for Older People, World Health Organisation, 2004
(3) Y Gunaratnam, Ethnicity, Older People and Palliative Care, National Council for Palliative Care and Policy Research Institute on Ageing and Ethnicity, 2006
(4) B Tunnage et al, Estimation of the Extent of Unclaimed Disability Living Allowance and Attendance Allowance for people with a terminal diagnosis of cancer, University of Wales: Centre for the Economics of Health, 2004

FURTHER READING
● B Monroe, “Social work in palliative care”, in D Doyle, G Hanks, N MacDonald, eds. Oxford Textbook of Palliative Medicine, OUP, pp565-573, 1993
● The National Council for Palliative Care 

This article appeared on page 36 (issue 28/9 – 4/10) under the headline: A sweeter palliative