End of life care: diversity

Does the National Health Service (NHS) in the UK deliver culturally sensitive end-of-life care services? Or does it rely on stereotypes and biases rather than exploring the actual needs of the population groups it serves? How much research and work is done in different hospitals to find out about the end-of-life care needs of different population groups? What measures are put in place to ensure needs are met?

It is sometimes assumed by NHS staff that people from different religious, faith and belief backgrounds should explain what would be suitable arrangements or approaches for an entire community. Sometimes this can mean that staff from minority religious and faith groups are put on the spot. Mashal Iftikhar, an NHS Consultant, for example, writes about a time when they were asked “You’re Muslim right?” the Consultant turned to me “Perhaps you can explain to the rest of us how dying in Islam works?”. What is the problem here you may ask? Well, how does the view of one Muslim apply to the general needs of the whole of the Muslim community? What made the white Consultant assume that a Muslim Consultant would know everything about the beliefs and practices of Muslim death rites? Also where was the individual patient voice in this? In general, people of colour and Black and Minority Ethnic (BME) people are seen as representatives of their group, so they are always asked to explain the needs of the wider community as spokespeople. What is the problem here? Well, not everyone is knowledgeable about their community (think about the different perspectives and needs within any community based on gender, sexual orientation, disability and socio-economic background alone) and it means that someone who is ill informed will land up dictating the services offered to everyone. So, no. You can’t just rely on the word of one person to form your picture of a whole community. That would be illogical.

For many Consultants and clinical staff it seems difficult to engage with Muslim families and other minority groups to use palliative services and use the hospice as a preferred place of dying. In general, palliative referrals for minority groups remains very low across the country. There are many reasons for this, not least the overall lack of awareness in NHS establishments of the needs of diverse communities, the historic discrimination faced by these communities in the UK and the lack of communication support services when delivering NHS care. This basically amounts to not seeing a person as an individual and not learning about diverse needs. Which in turn further isolates the person and makes communities less likely to work with local providers to find solutions to their needs. There is very little awareness of what end of life care planning entails, about why it is important to think about it rather than just relying on life sustaining/lengthening treatment – which can mean that by the time it is withdrawn, it is too late to plan a death at home or in a hospice. Another issue is the wider arrangements that hospitals need to make. For example, some minority groups, particularly those from South Asia and those from the Gypsy, Romany and Traveller communities, tend to have large numbers of people visiting and staying with their loved one. This is part of the needs of these groups. Most hospitals, do not have arrangements to accomodate these needs. With a lack of seating or waiting areas as just one example.

That said, white British people also have problems accessing palliative services and hospices because in general, information about these services are very low and understanding of what they entail, even lower. Also, again, this is not a homogeneous group – people have differing needs and expectations when it comes to end of life care. Why? Well, grief manifests in many ways and as diverse people we respond to it in different ways too. We also have different family arrangements, networks and concerns. However, unlike minority groups, the white British patient is more likely to be treated as an individual – there are few prejudices that are impressed upon their needs, unlike BME people.

So what can be done? The best hospitals have some form of communication training/workshops for all clinical staff. The training helps them navigate intercultural communication across different healthcare settings, including end-of-life care. It includes awareness of unconscious bias and gives people the opportunity to interrogate their biases and prejudices in a safe space which limits the possibility of subjecting patients to these biases. Without this type of commitment it is likely that end-of-life care services will continue to neglect the needs of minorities in the UK. The British Medical Association (BMA) has also called for end-of-life training for staff to ensure that patient needs are met and it has found that clinicians have asked for the training to be made available.

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