Faith, Food and Family

We specialise in helping people to make plans for their end-of-life treatment and care. Evidence shows that when people are supported to record their wishes for treatment and care, it can have a hugely positive impact on their end-of-life experience, and, importantly, on their quality of life before they die.

There are a variety of factors that can make planning for future treatment and care more or less straight-forward to achieve. For example, having conversations and recording an advance care plan can be easier if:

• you have family or friends nearby to talk to
• you can go to your GP and talk to them
• your doctor understands you and takes your conversation seriously

Sadly, we know from our work that many people don’t have these kinds of support systems or such open relationships with their healthcare providers.

It can be harder for some communities

Some communities experience a combination of disadvantages that negatively affect their access to healthcare and ultimately impact their health outcomes.

These can include:

• race and gender discrimination
• language barriers
• poverty
• being a migrant

When it comes to planning for end of life care and dying there are a range of specific challenges thrown into this mix.

We’ve been working with members of the Portuguese-speaking community in the South London borough of Lambeth, who have explained how they and their families experience these barriers on a personal level.

It’s difficult to access interpreters when we need them at the GPs. My daughter normally comes with me, but what about people who don’t have family? People use different methods, some people use friends, others have to pay someone. I don’t have enough time to explain my problems. It takes time.

Workshop Participant

We know that people in this community experience language barriers, alongside high rates of poverty and other disadvantages, ultimately resulting in poorer health outcomes.

Health inequality is not random or a matter of bad luck — it is a matter of social injustice

We undertook a Lottery-funded project that supported Lambeth’s Portuguese-speaking communities with advance care planning. We designed this work as part of our commitment to ensuring that diverse ethnic, faith and community groups are empowered to make plans for their end-of-life care — and to generate better understanding of the obstacles preventing this planning from happening and the ways in which they can be overcome.

People told us about the difficulties they face when considering the treatment and care they would want towards the end of their lives:

• Language barrier: many speak Portuguese as their first and only fluent language. The people we supported told us that not being able to communicate with GPs and other healthcare professionals makes them less likely to go the doctors and feel less supported and like they receive lower quality care when they do go.
• Mistrust of health and care professionals: people described their preference for family doctors, longer appointment times, and building a relationship with a doctor before having hard conversations. Some of the people we spoke with described feeling like doctors would not be attentive to their wishes — even if they wrote them down — at the end of their life. Experiences or expectations of prejudice can create barriers to advance care planning — GPs can become unintentional gatekeepers to advance care planning opportunities for this community.

At home they have what’s called a family doctor. We do have more time in Portugal… if you have a headache they want to find out where it comes from.

Workshop Participant

• Lack of understanding about advance care planning: several of the people we spoke to said they had plans to return home to Portugal or Brazil to be cared for by family at the end of their lives, and saw this as a reason that advance care planning might not be relevant for them.
• Reluctance to talk about ill health and death: while keen to get involved there was a sense that these were conversations that made some of those in the room uncomfortable and some struggled talking about death at all.

Some of the questions made me feel scared. I think you were very brave to talk about this!

Workshop Participant

Here at Compassion in Dying, we do more than simply identify obstacles to good care. We are committed to generating learning in partnership with community organisations and the people they serve.

During our project in Lambeth, we worked together to overcome some of these obstacles:

• We developed a bilingual advance statement template and translated other information so that people can engage with our resources and articulate themselves the way they feel most comfortable.
• We worked to understand why people can be reluctant to talk about death and dying and developed recommendations for how these conversations can be best initiated. For instance we discovered that language like “living well until the end” and “what makes your life worth living” was experienced as being more engaging, and helped people to see advance care planning as a positive experience.
• This piece of work informed the development of a larger Lottery-funded project which aims to increase access to advance care planning for Lambeth’s residents, especially those from communities known to experience health inequalities. Through this new project, we have developed training sessions for community Advance Care Planning Champions , which include people from Portuguese-speaking communities, who will be able to confidently start having conversations with people about how to plan for their future treatment and care.

Our work with Portuguese-speaking communities is informing the work of Lambeth’s Advance Care Planning Consortium. This is an open network of organisations working to make advance care planning accessible for Lambeth’s diverse communities and increase the numbers of people documenting their wishes, ensuring that what matters to each person is known about when health decisions need to be made.

The Advance Care Planning Consortium is using community events to raise awareness of the importance of planning ahead, and will provide one-to-one support for people to document and share their wishes.

Read the full report to find out more about the project.

Let us know what you think, or if you have a story to share get in touch — via email or on Twitter.