Hospices in the UK must meet the challenge of an ageing Muslim population by overcoming barriers that deter Britain’s largest faith minority from using their services, ensuring that language, cultural and religious needs are met.
The UK hospice network should see a significant increase in Muslim patients in coming years as a result of rising numbers of elderly Muslims combined with changes to traditional family structures, a new report says.
But only a handful of more than 200 adult and children’s hospices in the UK have Muslim patients, reflecting “a perception that hospices aren’t really for us”, said Sughra Ahmed, programmes manager in the centre for policy and public education at the Woolf Institute. The institute produced the report on behalf of Hospice UK and Together for Short Lives, a charity for children with life-limiting conditions.
Unless existing hospices take positive steps to be inclusive, Muslims are likely to set up parallel institutions with implications for social cohesion and integration, said Ahmed.
Underlying changes in the British Muslim community are highlighted by the report, Bridging the Gap, published on Thursday. “All demographic indications point to Britain’s older Muslim citizens becoming in need of hospice and broader end of life care services in increasing numbers over the coming years ... The increase of elderly people coupled with a gradual shift towards more nuclear and smaller family groups will mean the number of users requiring palliative care services will increase significantly over the period of a generation,” it says.
According to the 2011 census, there were 2.7 million Muslims living in the UK, or almost 4.8% of the population, making them the largest religious group after Christians. Although the Muslim community is generally young, with 33% aged 15 or under, 4% were over 65 – with numbers increasing as those who came to the UK as young men and women in the 1960s and 1970s grow older.
Meanwhile, Muslim family patterns are changing with successive generations. In contrast to traditional extended families, the pressures of finding work, good schools and affordable homes are driving younger Muslims increasingly to live apart from their parents and older relatives. Rising numbers of Muslim women are working outside the home. These factors, said Ahmed, challenge “cultural norms and values for Muslims to look after the elderly and sick”.
One person told the report’s authors: “You know we are raised to believe that we will take care of our parents, it is our duty and we are happy to do that. But not all are able to do that. So make people aware that you can still have loved ones in a hospice and it’s OK. And this is one of the biggest challenges that [hospice staff] have in getting over the taboo that Muslims have ... about not caring for your parent. You know I quit my job to care for my mum, I was lucky to be able to do that, I realise not all people can afford that. And then you feel guilty that you can’t.”
The UK hospice movement needs to respond to new needs by respecting religious and cultural norms, overcoming language barriers, providing relevant training and education for staff, and ensuring that Muslim communities are aware of its services, the report says.
It suggests recording data on religion and ethnicity, using specialist satellite television and radio channels to educate Muslim communities about hospice care and specialist training for healthcare professionals to “better understand the ‘last journey’ protocols”.
It points out that “the history of ‘hospice’ is rooted in Christian traditions”, which may deter Muslims. “Hospices have historically catered for a population that was less heterogeneous than the diversity in Britain today, but most now aspire to represent and support the community they are situated in.”
However, the report adds: “Without effective communication, cultural and religious concerns and sensitivities will continue to act as barriers to positive engagement with hospice services.”
The Muslim community must also overcome social expectations that families should look after sick relatives at home. “When we put a child in a hospital or a hospice, you know our background, families think ‘oh can’t you look after that child, why have they left her there?’ See, that’s our religion and our faith and people chat a lot,” one person told the report’s authors.
In 2013, 5.3% of all deaths recorded in England and Wales occurred in a hospice. However, UK citizens are not required to state religion or ethnicity on death certificates which, the report says, “give[s] rise to real challenges in the exploration of social patterns in deaths and, accordingly, of patterns of end of life care.”