“We need training in cultural sensitivity – we all want to help, but we’re not aware of our unconscious biases”
Marie Curie Deputy Head of Quality and Clinical Governance Rekha Vijayshankar shares her views on why ethnic inequity exists in advance care planning, and what we could do to tackle it and help people get the end of life care they want, regardless of their background.
Advance care plans give people who are living with a terminal illness some control over what they want at the end of their life. Some reassurance, both for them and those closest to them, that their wishes and goals of care and preferences towards the end of life will be respected. Not having a written care plan can make it much harder for people to have the end of life they want.
International research shows ethnicity can impact whether someone is likely to have an advance care plan – in predominately white countries, white people are more likely to have a legally documented plan. However, there is no disparity when it comes to more informal conversations about end of life plans. So why is this?
We need to understand the beliefs that shape people's attitudes to death
There are so many different ways that people's cultural background and beliefs can influence their end of life wishes, especially amongst minoritised populations in Western high-income countries.
Death and dying are understood as a psycho-spiritual process amongst minority ethnic communities, not a bio-medical event as is popularly viewed in the West. A faith in a higher power as the protector and arbiter of destiny is prevalent. This may explain the delay in treatment seeking and disclosure. A similar thread exists in the Southeast Asian population, and among Hindus. There is a strong belief in Karma.
This is a conversation that goes right to the heart of people, how they want to die, what they care about, what's important. And it's as simple as or as hard as trusting the person you have that conversation with.
Most ethnic minority populations are family-based cultures, and discussions on treatment preferences and goals of care tend to be family-orientated, usually male-led, although the women in the family have a guiding voice in these decisions. The view is that this is not so much a decision for the individual to take as for the family to decide.
And that's why training is needed on cultural sensitivity because we are all here wanting to help but we're not aware of what people may want or our unconscious biases. The call is for a cultural humility, a genuine openness to learning ways different to ours.
People from marginalised backgrounds mistrust formal healthcare, and for good reason
Our extensive work in London with minoritised populations facing high and multiple deprivations, evidenced the pervasive institutional mistrust in these communities given their experience of systemic racism in the criminal justice system, education, and the disproportionate impact of Covid-19 pandemic on minoritised populations in the UK.
So as a person of colour, what is my level of trust going to be in a system that enables this inequity?
Our participants in our London engagement told us that they feel systemically invisible, especially those with poor language literacy. One participant commented: "Of course I'm going to feel safer talking about my end of life wishes with someone who understands my language. I not very good with computers not good English as didn't do much school in my country."
We need to take away the power imbalance
The other barrier is something as simple as a language. There aren't enough translators trained to undertake such sensitive discussions. Sometimes we've only got 15 minutes for that conversation. We're looking at Google Translate to try and understand what they're saying and convey our message to them, and it doesn't capture all the nuances.
If you don't speak the same language as the healthcare professional, or if you're socially or economically disadvantaged in some way, you can have this feeling of being invisible. There's this power imbalance.
What am I going to do if I'm feeling invisible? I'm going to shut down. You may think "OK, you are the professional. You know what you're doing. I don't know, so you decide whatever is right for me."
It's as simple or as hard as trust
This is a conversation that goes right to the heart of people, how they want to die, what they care about, what's important. And it's as simple as or as hard as trusting the person you have that conversation with. That can be achieved, but it needs to be creatively achieved.
It doesn't need to be the doctor who has this conversation for example, as it seems to be now. It could be started by a nurse, a physio, a speech and language therapist, someone who the person has a connection with and can trust. Maybe those discussions are for places like community centres. And then the doctor comes in to decide what treatments they think may be useful.
Then there need to be regular conversations as their illness progresses. You can't necessarily decide everything at once, because you don't know what you will be feeling like and thinking at that time.
If you scratch the surface, we have the same emotions guiding us
In my time on the wards, I've seen so many people being treated as 'other' by healthcare professionals, however unintentionally, because of their race, their culture, or something else – it's endemic.
For example, if you want to talk about a person you're caring for and their background, what do you say? Maybe "I don't remember which part of the world they came from. But you know, lots of people come into their room." You've already othered them.
If you don't speak the same language as the healthcare professional, or if you're socially or economically disadvantaged in some way, you can have this feeling of being invisible. There's this power imbalance.
But if you scratch the surface, we have the same emotions guiding us, informing us. Forgiveness, family, bonding, love, guilt, worries about the future.
Whether I've nursed people from ethnic minority backgrounds, or white middle class backgrounds, the most important things to us nearer death are the same.
Seeing death as a part of life makes these conversations more natural
Most Western cultures are quite death phobic. Whereas in the more sort of Asian, Latino, African populations, there is more acceptance of death because it's as much an organic part of life as birth is.
In India for example, where I come from, it's not uncommon for people to be dying at home with little children's scurrying around, living their daily lives. The understanding of death is that it is a transition, which makes it very spiritual.
If we approach it as death, being linked to life and not separate from it, something that you need to speak clinically about, then these conversations feel more normal and natural.
Just because someone looks different to us does not make them the other
That is the biggest learning – our own cultural humility. That is very important.
At the end of the day, without cultural humility, we will not have the openness to learning, however many training programmes you put in. It's about trust building and a mutual openness to dialogue – "I am willing to learn from your death and bereavement systems. They are as valuable as my own."
And the openness that comes with humility. Saying "Actually, I don't know, you tell me how you would want to talk about this."
Read the full report about how ethnicity can affect someone's likelihood to have an advance care plan.
Join our virtual research conference on 5-9 Febuary, where we'll be discussing advance care planning, equity at the end of life and more.
Marie Curie was also recently involved in a series of innovative workshops with minority ethnic communities in areas of high deprivation in North London. The Celebrating Life workshops explored how ethnicity can affect knowledge of palliative care and advance care planning.
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