“We Look after Our Own’ – Dispelling Myths on End of Life Care Services for Black and Ethnic Minorities

BAME groups -Learning Alliance
Listening to the seminar – Black and Ethnic Minority Groups at the University of Greenwhich

At a seminar to gather views on Palliative Care and End of Life Care Services from Black and Ethnic Minority communities hosted by Greenwich University in Medway, Dr Carlos Moreno Leguizamon, Senior Lecturer in Health and Social Care and Dr David Smith, Principal Lecturer in Sociology found that taboos and cultural beliefs surrounding death and dying were among common factors preventing some groups from accessing the services. What other factors arose? Diversity Business Magazine was at the scene to find out about measures taken to dispel myths and attract more BAME communities to open dialogue about these essential services.

Dr David Smith, you are one of the organisers of the recently held seminar at Greenwich University on Palliative and End of Life Care Services for Black and Asian and Minority Ethnic People (BAME). Please explain what the aims of the meeting were?

The aim of the meeting was to encourage dialogue and the sharing of knowledge and experiences between BAME community members on one hand and health and palliative care providers on the other.

It is known that BAME groups access and use palliative care less than the white majority (and also important differences in access within the white population). The main aim of the meeting was to build on the 1st phase of the project where Dr Carlos Moreno- Leguizamon and myself established a learning alliance with BAME community groups such as Diversity House, hospices and health providers around the issue of palliative care and conducted a pilot study of attitudes and experiences of palliative and End of Life care in BAME groups in north-mid Kent.

A lack of knowledge and awareness of palliative and End of life care services was a common theme. On the other hand many health providers lack knowledge of how different groups approach death and dying and what their practices and preferences are. So the aim of the meeting was to encourage dialogue and the sharing of knowledge and experiences between BAME community members on one hand and health and palliative care providers on the other.

Dr David Smith, in the morning session, several groups from BAME communities, were invited to give their views as to why they are reluctant to use the services of care homes and hospices specialising in palliative and end of life care. What are their concerns?

This differs between different communities and also within them – it is hard to generalise because there are differences within BAME groups by gender, social class, between 1st generation immigrants and those born in the UK – but there are tendencies within different BAME groups and there are also certain key themes that emerged.

A lack of awareness of available services or how to access them e.g. who is responsible for making referrals; preconceived ideas among health professionals regarding some BAME groups e.g. ‘they look after their own’ which may not necessarily be the case.

Others mentioned the common perception that palliative care is all to do with cancer which is not the case. Palliative care is about how to improve the quality for anyone facing a chronic and incurable disease. And here the difference with End of Life care is significant as the latter is just for individuals facing in general the last year of life. So Palliative Care and End of Life although related are different.     

Dr Carlos Moreno-Leguizamon, what are the key findings of the report?

In gross terms certain themes emerged strongly depending on the group while other themes were crosscutting and were raised by all groups. For example, among the African migrants their own experiences of working in the care sector strongly shaped their beliefs and attitudes towards palliative and end of life care along with experiences of racism at work.  Their own perceptions of poor standards of care towards elderly and frail patients made many afraid should they have to enter such care themselves in later years. Also cultural beliefs and taboos surrounding death and dying emerged as strong themes surrounding palliative and end of life care. There was a belief that talking about death is to evoke death making people reluctant to discuss the topic.

Meanwhile among South Asians communication in general was an important theme and in particular, the roles of insiders/outsiders. In certain contexts participants noted they would prefer to communicate with health staff via someone from their own community and in other situations someone from outside their community would be easier to communicate with indicating a need for sensitivity and a case by case approach.

Similarly, stigma surrounding illness and death was a major theme in these groups which means people can be reluctant to disclose illness to family and friends. This stigma, combined with a low level of knowledge about palliative care means that use of such services tends to be low.

The main themes in the Gypsy/Traveler group were firstly their experiences of discrimination in society generally and in using health care services more specifically. This made many believe their experiences would be the same in palliative care settings.  Second related to the first point there is a reluctance to disclose their ethnicity meaning their specific needs may not be catered for or acknowledged and finally conflicts around customs and end of life care in formal healthcare settings and communication problems with staff. Staff could do more to accommodate those customs and to accept all patients equally regardless of their background.

Dr David Smith and BAME Groups
Dr Dr Carlos Moreno Leguizamon (far right) and Dr David Smith (2nd left) with members of the Learning Alliance from BAME Groups

How should health professionals in this sector reach out to BAME communities? After all, in many of these communities it is considered unthinkable to place old people in homes, away from loving family members.

Dr Davis Smith, one of the findings is that health professionals often lack knowledge of different BAME groups’ preferences and customs when one of their members becomes terminally ill. This is especially the case with many of the more recently arrived groups as greater diversity in the population means greater diversity in the way different groups approach the end of life.

Health professionals need a greater understanding of the needs of different BAME communities and to develop networks and communication channels embedded in those communities in order to reach out to them. That is what the Learning Alliance is trying to achieve.

Regarding the attitudes of the communities, first palliative care is very different to old people’s homes away from loving family members. But the point that family care is the preferred option is true in many cases among BAME communities and the wider population. However the reality of modern life is making that increasingly difficult.

Many BAME communities are showing a pattern of dispersal out of urban areas meaning families are becoming more geographically distant. Families are moving from an extended to a nuclear family structure; women – who traditionally provide care at the end of life in most cultures – are working more. While family care may be the ideal in many cases this is becoming increasingly difficult as wider social changes impact on BAME communities.

Dr Carlos Moreno-Leguizamon, when talking about BAME Communities, it is of course a very wide group of people with different cultures, traditions and beliefs. How do you overcome the tendency to generalise and yet appear inclusive and relevant to all people?

In terms of research in some cases is important to generalise while in some other is not. This is the constant challenge which any research community always faces when researching HUMAN issues.  For example while there are some issues that were common to all African or Asian or Gypsy people this also differed within those groups according to how long they had been in the country and whether they were born here; there were differences by gender and by social class: level of education and income. At the same time the most basic issues are shared by everybody regardless of their ethnicity, class and background. So the task is to tease apart those more general themes and issues form culturally specific ones and then to assess how those culturally specific issues differ within certain groups and why that is the case.

Dr Carlos Moreno-Leguizamon, would you say that mainstream communities have also something to learn from BAME communities with regards to how they care for their elderly and terminally ill.

Of course, mainstream communities experience similar situations to BAME communities regarding the challenges of modern life: dispersion of family members, lack of time for caring for elderly parents, changing roles in women’s roles and so and so forth.

Dr David Smith, what has been the major shift or significant trends that have impacted on the quality of care offered in this country in terms of end of life services?

As we said at the meeting by international comparison the UK is the best place to die in the world and has the best developed system of palliative and End of Life services. That doesn’t mean they are perfect however and not everybody is benefiting from those services as much as they could. Recognising that inequalities exist – by ethnicity, social class, where you live – and a focus on how to address those inequalities has been one major shift in recent years.

There is also a much greater willingness to engage with communities than was previously the case. On the downside the wider economic and demographic context e.g. a squeeze on funding and an ageing population – places those services under increasing strain.

Dr Carlos Moreno-Leguizamon, how should BAME communities engage with health professionals to access services?

The aim of our programme is to raise awareness of services to BAME communities.  Knowledge of what services are available, what those services provide and who makes referrals to them is key to engaging with health professionals, as was apparent at the meeting. At the same time raising awareness among health professionals of what those communities’ customs, practices and attitudes towards end of life care, encouraging dialogue building bridges to those communities is the other vital aspect .

Dr David Smith, finally has there been anything surprising or significant to have come out of the seminar and will there be any follow up research?

One very positive outcome of the meeting is that there is a real appetite among the BAME communities for more information about palliative and End of Life care. Among the health professionals and providers who attended there was a desire to learn more about those communities in general and diversity in particular as well as how best to engage with them which was very encouraging. A further meeting is planned for September and we intend to develop this research based on the findings we have to date.

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