Of course, everyone’s different. Perhaps especially when they’re dying. But the fact that there’s no one simple right answer gives the biggest and best clue.
It underlines just how important it is to carefully listen to and hear - rather than simply assuming what individuals and families want and need.
I’m a volunteer with Eden Care, an End Of Life support organisation. And I’ve worked as a doctor for 25 years. Although I thought I knew what I was doing, I’ve learnt a lot of important lessons from Eden Care. Lessons about culturally sensitive listening and truly personalised priorities.
Even though we in Eden Care especially help Muslims in need, many of these lessons are relevant to you and your family.
Even within your family, have you assumed you know? Or have you actually listened and heard?
Eden Care is not trying to replace the NHS or Social Services. We’re aiming to fill those cultural, social and spiritual needs that the statutory services don’t have the time or the expertise for.
Our trained volunteers have usually experienced the terminal illness and death of a family member or friend - making them ‘experts by experience’.
In Eden Care, we do befriending. Sometimes we also do advocacy, to help individuals and their families access services. But generally our volunteers sit and listen and chat about whatever is important to our clients. Lonely BAME (Black Asian and Minority Ethnic) individuals often hold onto the hands of other BAME volunteers and don’t want to let them go.
Everyone who we befriend is specifically asked for their Three Wishes - these generally aren’t the glamorous holidays that young, healthy people put on their fantasy ‘bucket lists’. Instead, our clients may want a special sort of their favourite dried fish from ‘home’; or to visit the market and shops they used to go to every day. Trips like that mean people can speak with their old friends, and see how valued they still are. Sometimes clients want to be reconciled with families they’ve become estranged from. Many want someone to recite the Quran. I’m not religious, but I have seen a man who was grey and taut with pain, breathe easier and stop sweating when he heard the words that mean so much to him.
If individuals have no family or friends to be with them, or the family would like more support, then when someone is actually dying, Eden Care can arrange a Rapid Response team to help out.
Unlike many of the services ‘for’ BAME people, Eden Care has been developed by, with and in direct response to the needs of BAME communities. Very importantly, Eden Care is BAME led.
That avoids the power imbalance in so many encounters between patients and doctors (or social workers). When clients and volunteers speak the same language - literally and culturally - it is easier to establish trust. And trusting relationships are vital at this challenging time.
Eden Care is not a service squashing patients into ‘the system’ but a way of listening for, and responding to, individual and family needs. I ask again, have you explicitly listened to the needs of your family?
Many Eden Care clients want help with a dignified Muslim burial - so we developed a free burial service for the needy.
We were immediately responsive after the Grenfell tragedy too. Around 80% of Grenfell residents were BAME. Even while the Tower smouldered, Eden Care volunteers offered food, headscarves (for female survivors who had lost everything), a listening ear, and support. We focused on our burial expertise, liaising with the Coroner and other voluntary organisations to bury the 42 Muslim people (out of 70 deceased) who died at Grenfell.
Although cultural sensitivity is very important for Eden Care, we are not afraid to change. Muslim undertakers are usually men, but a (very splendid) woman, Jusna Begum, is now in charge of our burial services.
We have not got everything sorted out at all. But we focus on simple acts of kindness to dying individuals and their families.
We would like to also influence policy makers and practitioners. Although some people are happy with the ‘normative’ system, others do not feel comfortable, welcome or safe in healthcare environments. They are reluctant to have sensitive conversations with people and in places that they do not trust. Practitioners and policy makers who want to address barriers for BAME and other minorities need to work in trusted spaces, and alongside communities, to develop ways of supporting decision making at the end of life.
‘Hard to influence’ decision makers might be more of a problem than ‘hard to reach’ communities and individuals.
Can you listen in your family?
Listening and hearing means you can advocate for your family members.
And, please, listen now - it’s much easier before an emergency, before someone is actually dying.