Death and dying: a cultural taboo?

“I like chicken soup, it’s my favourite! I like music from Madeira to remind me of home. With music and soup I am fine!”

Why this work matters

This quote is from one of the people Compassion in Dying supported through a project that we’ve just completed in the London borough of Lambeth. One in six people living in Lambeth (more than 35,000 people) speak Portuguese as a first language; and Lambeth’s Portuguese speaking communities are known to experience poor access to health services and information, and poor health and wellbeing outcomes. The Care Quality Commission’s A Different Ending identifies that minority ethnic groups are more likely to have unmet end-of-life care needs, and experience multiple barriers to accessing good, personalised care.

We wanted to work with Lambeth’s Portuguese-speaking communities to tackle these health inequalities. We supported Portuguese-speaking people to access more personalised care.

What we did

In partnership with local community organisations The Lambeth Portuguese Wellbeing Partnership, The Stockwell Partnership and the Latin American Disabled People’s Project, set out to support Lambeth’s Portuguese-speaking communities to consider their values and preferences for their treatment and care, and to document and share what matters to them with their GP. In doing so, we aimed to facilitate more meaningful discussions between Portuguese-speaking people and healthcare professionals, helping to make sure their care decisions started with what’s right for them.

“I have faith in God. I am Catholic. I pray in the evening and at night. I like to watch masses at Christmas time on TV. I would like someone to read exerts of Bible to me if I can no longer read. I respect and celebrate Catholic days. On Sunday it’s a resting day.”

Participants were very vocal in their likes and dislikes and had a strong sense of identity as individuals but also part of their community. The majority of people who were part of the groups did not speak or read English. Some of them were quite isolated and did not have any family to care for them.

“There is a particular fear at the moment about late life care, as apparently there are ‘Parent Orphans’ increasingly in Portugal – elderly parents dropped off and left in hospitals or placed in unregulated cheap care homes, neglected by the rest of their family”

(Staff member)

Challenges

The level of engagement in the project varied and was not without its challenges. This made us examine how culture, belief, traditions and expectations effect how an individual engages in the subject of ill health, death and dying. Some of the barriers included reluctance to talk about death and dying, mistrust of healthcare professionals and competing life priorities. Respecting these realities, allowing time for discussion around them and being flexible with structure and content of the sessions was an important part of the work.

“There is a deep seated reluctance (verging on superstition) to talk about poor health and death – just talking about it can lead them to feel they are bringing bad luck down on themselves.”

(Staff member)

Overcoming the challenges

We know that Advance Care Planning is not for everyone. Nevertheless, we found that when people knew they had the right to plan ahead, and that doing so helps healthcare staff know what matters to them, people did want the opportunity to discuss their priorities for treatment and care.

Over the duration of the project we supported 19 individuals to be aware of their choices around advance care planning, and provided training for 38 staff and volunteers. While we will continue to be sensitive to individual fears, we also believe that it is important to give people who do want to discuss their wishes the opportunity to do so.

Many of the barriers to people thinking about death and dying highlighted by participants can apply to other groups and individuals. Projects such as this are vital for learning about the strengths and needs of diverse communities.

During the project, Compassion in Dying produced:

• Information about planning ahead in Spanish and Portuguese
• A bilingual Advance Statement (in which people can detail their goals and values for care) in Spanish and Portuguese
• Bilingual information on planning ahead for healthcare professionals.

The bilingual Advance Statements are available for open sourcing so community organisations can put their own logo on them. If your organisation is interested in using the bilingual resources, or in knowing more about the work, please contact us: info@compassionindying.org.uk