Diverse experiences by race, ethnicity or faith

What the evidence shows

Potential barriers to accessing palliative care may include a lack of cultural sensitivity amongst healthcare providers, for example, when dealing with dietary requirements and religious observances. A greater prevalence of non-malignant (non-cancerous) conditions in minority ethnic groups may also be a factor in the ability to access palliative care. Quality of care may be impacted by language barriers. People whose first language is not English may have to rely on interpreters or family members to communicate their needs and wishes to healthcare professionals and to translate information from those professionals. This gives the family greater sway over what the patient hears and requires their involvement in crucial decisions.

Healthcare professionals may make generalisations or assumptions based on ethnic background, for example, the willingness and ability to care for family members at home. However, one family's needs will often differ from another from the same background. In addition, generational attitudes towards death and dying are shifting, particularly amongst people who are younger or were born in the UK.

An expressed preference for dying at home may be based on a deep-rooted cultural expectation that family members will care for them at home. Past experiences of racism may also play a part in the decision. Barriers to effective care planning may include fear of discrimination or being denied treatment, and conflicting values between family or religion and the notion of palliative care.

Although the spiritual and practical support provided by faith-based communities may be considered a substantial asset, faith rituals related to the process of death, funerals and bereavement may require flexibility from end-of-life care providers. This may include numbers and frequency of visitors, treatment of the body once death has occurred, and the timely release of the body to the family for immediate burial or cremation.

What Kirklees organisations told us

The main themes emerging from the discussions about inequalities in end-of-life care and support by race, ethnicity or faith were as follows:

Cultural sensitivity

• End-of-life services are generic, and don't necessarily accommodate specific cultural practices, rituals or traditions, such as burning incense or applying ointments.
• Due to experiences of racism and discrimination, there remains a significant level of mistrust of formal healthcare services, which can impact care seeking.
• Institutional racism affects access to end-of-life care services. There is an expectation that if you are more affluent and of the dominant race in your country, you will be able to access better quality care, due to previous exposure to higher quality service. The quality of care and those delivering that care therefore vary according to your ethnicity.
• Healthcare environments can be perceived to be unwelcoming, due to restrictive rules around visiting times and numbers of visitors allowed.
• In some cultures, there is a mindset of not wanting to bother or challenge medical professionals. People who do not feel able to speak up find it more difficult to get the support they need.
• Language barriers can make it even more difficult to have conversations about end-of-life, or to understand use of medication or make decisions on treatment.
• Translation into Punjabi is sometimes not available. Translation between languages can be difficult because words mean different things in different languages.

I think if it was someone who is from an ethnic minority and they realised that they could pick up a phone and talk to someone in their own language, who would understand them more, I think that would make a massive, massive difference.

• Poor communication can mean people are not aware their relatives are at end-of-life.
• We shouldn't assume or generalise about needs or preferences based on race, ethnicity or faith. End-of-life care and planning should be personalised to the individual (and their carer's needs, where applicable).
• Increasing numbers of individuals are living alone or without family support, as more family members seek higher quality work outside of the family home, contradicting a misconception that Black and Asian families are usually an extended unit, which also impacts on care for the elderly.

There's been a huge cultural shift in the way that we live.. So now we're in a situation where actually people do need more provision and more care and more services, but they're not there or they're not fit for purpose.

I had a meeting recently and they said 'Oh, the problem we have is people look after their own in your communities' and actually it made my heart sink...because actually that's not true. I think there's a perception that we look after our own and there's a perception that we don't need that support and perhaps all those agencies don't need to be involved and that kind of thing. And she gave a really stark statistic, which was that Asian and Black people manifest at stage three and four in cancer, so early diagnosis is rare and a real challenge.

Faith-specific issues and community assets

• In some faiths, people believe that everything is pre-ordained, so they wait to see what happens to them.
• Faith is a spectrum, not a fixed point. People with the same religion may have different cultures, and within those cultures there can be wide variation.
• Faith leaders have a role to play in discussing death, although they may not be best placed to provide advice or signposting on where and how to access all aspects of care and support.
• Places of worship provide comfort, support, strength, but death remains abstract from this experience. This can make death seem sudden and shocking.

Though there might be a section of the community that may go to the religious places for comfort, for support, for strength, for all of that the concept of death and dying is still far removed, even in the spiritual context.

• Local burial committees linked to mosques use a network of volunteers to provide round-the clock support during the end-of-life and burial process, including liaising with services around home adaptations, completing death registration paperwork and making funeral arrangements.

The volunteers will alleviate as much of the stress that will come at the end by ensuring the quality of life and the quality of end of care is as good as possible.

• If members of the community are not actively engaged with local faith groups, they may not be aware of available support.
• Someone in hospital might get lots of people coming in praying for them, because that is part of their faith. They may need more space, or a quiet room, to do this.

You'll see a lot of people praying quietly... Sometimes I think hospital settings, doctors, nurses, they can get overwhelmed by how many people are visiting this person, but actually that's a part of our culture, our faith... being able to pray for the person who's dying.

• Delays in releasing the body can be distressing. In the Muslim faith, the sooner you can shroud and bury the person the better. A case was mentioned where the family were waiting a week for the body to be released. The upcoming changing role of medical examiners following the Shipman Inquiry is causing anxiety in the Muslim community, as this is expected to slow down the process for releasing bodies.

The weekend was a long holiday weekend. It caused the family distress, not being able to obtain a death certificate and arrange a quick burial as per their Muslim faith.

• In certain communities there are rituals for after death, for example, supporting a widow and children. For some faiths, the relationship doesn't end with death, loved ones can be supported through their transition into the next world. Rites of passage related to religion can help contextualise death and habituate death as an integral part of life's journey.
• In the Muslim faith, the purpose of life is remembering death all the time. This can make it easier to have conversations about death, but finding the right support can still be difficult.
• Faith-based charities, such as Huddersfield Mission, can combine general holistic and specialist support, alongside a spiritual dimension if that's what the person or family want. This may help bring families together and aid the grieving process.

Death for most of us is in some way a spiritual event... We are poorer if we don't acknowledge that.

• A whole community supports the dying. They often identify and then advocate for the dying, requesting services and practical support. They recognise gaps that services do not.

The strengths I see are always from a community perspective, and a faith and a neighbourhood perspective, rather than... health practice.

• Each community can learn the best from other communities. We should support people from other communities in the same way we support people from our own community.

Every community has its own challenges... and its own strengths and weaknesses.

For many people, faith plays a significant role in their life, the way they die... People should be able to have these discussions for their end-of-life planning without feeling embarrassed, judged or as a hindrance.

Staff training and workforce diversity

• Health professionals need to be aware of cultural differences - for example, those baptised in the Sikh faith would not want their hair cut or shaved.

We need professionals to be aware of what's going to happen after someone died and what happens in specific cultures, specific religions. For example, in the Muslim community, the funeral happens very quickly.

• Training existing staff and employing people from diverse communities would enable staff to advocate for different cultural needs. This would also help with designing and delivery of services, and engagement with communities.
• It is important to educate nursing home staff, as well as hospitals and GPs, about the needs of different faiths. Education would also make the pathway to hospice care easier.
• Bereavement services and training courses should be tailored towards the needs of specific races (such as people of the African Caribbean diaspora).

Difficult conversations, access to support and lack of information

• More support for the family is needed around how to deal with death, including practical steps around preparation and overcoming the stigma of talking about death. The words 'death' and 'dying' are almost seen as viral, and once said, convey a sense of death to those who hear them. Support should extend to what to expect when someone is in the last days of life. Spiritual needs are often well catered for, but there is a gap in the understanding of what clinical and palliative care is available.

Start those conversations early on from a very young age and making it part of life, that actually end-of-life is also part of, you know, the whole process.

Let's actually be more resilient and let's be more positive and let's be more proactive about dealing with things that are part of life, and maybe bring in some celebration.

• People should be supported to plan for their death transition, giving them time to make these plans, and ensuring people's needs and wishes for end-of-life care are logged and available. Also, recognise the individual when providing care.

What we need to remember is that these people are still alive. They are alive until they die, until they take their last breath.

• There may be a reluctance for someone to communicate the severity of their illness. Healthcare professionals should respect an individual's decision whether or not to receive care.
• Conversations about dying are very different from different ethnic perspectives - some communities will try to spend more time with their loved ones, others will focus on the process of what happens after they die.

You don't overcome a death, it's everlasting... It's there with you... It's a loss forever. And how do you deal with that? All this needs to be talked about, more open discussions.

• Families are often too busy caring for the sick person to have time to look around for support. It can be stressful for families when they have work commitments.
• More information from hospitals and hospices about the services they provide would help people to decide whether it suited their cultural needs.

There's a lot of research around, more people from a sort of diverse ethnicity dying in hospital rather than dying at home. So for me, I kind of think, you know, that lack of knowledge isn't there or that assertiveness isn't there to push for services, for people to push to be supported in their own homes, if that's what they want as well. It's all those things that kind of get in the way.

Yeah, I have reached out. I've tried, but all to no avail. I felt that my background, let's say, or my race had something to do with it.

• It is important for support to be available in communities - examples of this include the Hope Cafe in Ravensthorpe, and the reach of Community Champions.
• Many people from South Asian communities are cared for within the family home, but facilities may not be suitable, and families are not always aware where to get support to upgrade their homes. It would be good for hospitals to assess the home before discharging patients. Where care is provided by families at home, it is not clear whether they are sufficiently supported to provide high quality care.
• A link worker would be useful for providing information and advice to help families in the end-of-life phase.
• The Kirkwood now has a more diverse approach; carers from the South Asian community are feeling more confident about accessing their support.
• It is important to acknowledge the role of unpaid carers and consider their emotional and physical wellbeing. Many carers have their own long-term health conditions but receive limited support. Increasing awareness of support available would help.

Connected systems

• The voluntary groups who support the community rely on being notified of someone being seriously ill (usually by someone at the hospital). This communication is important, as often they are the only ones in the community who know about end-of-life pathways.
• Better sharing of information about and between services and other supporting organisations is needed. Better communication would help to ensure that individuals and carers do not have to constantly repeat themselves.
• Services rarely if ever connect directly to the individual in their community; there's an expectation that the individual or community go to, or are signposted to, services.
• Collecting equipment quickly after a person has died at home (beds, walking frames, etc) can help the bereavement process.
• Care provision seems to be more disjointed when it crosses over geographical boundaries.

Inequalities and socio-economic factors

• BAME communities are more likely to suffer with multiple morbidity, such as diabetes, stroke, cardiovascular disease, meaning a different care pathway.
• For those in work, a dying relative can pose a dilemma of choice. Becoming a full-time carer can be impoverishing, and impoverish future generations in the family.

There's a socioeconomic issue there as well, because if you've got a job and you're working full time and you're presented with a family situation, you've got a choice to make. You either provide for your family and the future generations because you've got a job and an income hopefully, or you hand your notice in to become a carer and live in poverty in order to care for your loved one.

• When the cost of burial is in excess of £3000, this will cause worry for families, particularly those in financial difficulty.
• Employers should support individuals who have caring duties by being compassionate workplaces, based on openness, transparency and trust.

You need to be able to trust in your management system, your employer, your whoever, to have your back when you've got to just disappear [to provide end-of-life care] and catch up your time later.

Recommendations

• Services that support the dying should focus on providing culturally appropriate, community-based and humane support and information. They should be linked with palliative care specialists. Bridging professionals like social prescribers could offer a link between GPs and supporting organisations.
• Partners and professionals should understand more about specific cultural norms around ritual and observance of death. For instance, medical professionals should understand that bodies need to be washed and prepared by community members for the funeral in certain religious practices.
• Everyone should be treated as individuals, without making assumptions about a person's needs or wishes based on their race, ethnicity, or faith.
• The financial burden of dying is important. Suggestions were made to increase the carer's allowance, for employers to offer more flexibility and empathy, for clearer and more inclusive policies on compassionate leave (to recognise compassionate allowances beyond first-degree relatives, for example), and for a culture shift towards a more supportive and compassionate workplace.
• Facilitating a change of perspective could destigmatise the word 'death'. Reframing it as a normal, familiar aspect of life, even a celebratory thing, could promote conversations around the end-of-life.