Landmark Death Literacy research to shape local hospice end of life care
Dorothy House Hospice’s vision is for a society where death is a part of life. This website is one iteration of this vision, however, it is also our mission to ensure that everyone in our community has access to outstanding palliative and end of life care.
Death Literacy Survey
In order to ensure we are serving and empowering our communities in ways that matter to them, we commissioned a Death Literacy Index (DLI) survey – the first of its kind. This internationally accredited model offers a benchmark to survey the communities we serve and the results can be a route to:
Understand the level of skills, experience and confidence within our communities,
To ensure we develop services that build upon these and guide our service improvement.
“Research shows that only five percent of care is carried out by professionals at the end of someone’s life, but clinicians should harness the potential of the 95%*. In order to best support patients, we have to better understand the knowledge and the experience that exists within our communities. This is what makes this landmark research so exciting for Dorothy House.” *Compassionate Communities UK (CCUK
James Byron, Director of Engagement, Dorothy House.
What is death literacy and why is it important?
Death literacy has been defined as:
“…the knowledge and skills that people need to make it possible to gain access to, understand, and make informed choices about end of life and death care options.”
In the simplest of terms it means that if we feel ill-equipped, we feel awkward about discussing death and therefore we avoid end of life planning.
Within a public health framework, the level of death literacy can affect end of life outcomes and by association can impact upon the way in which individual communities use their experiences to shape future end of life care.
Why was the research commissioned?
As a hospice charity, we are committed to engaging and empowering our local communities to support one another at the end of life, so that no one faces death alone.
In order to do this effectively, we need to better understand what assets and differences there are between the 10 neighbourhoods we serve so that we can ensure our care matches the need.
What did the Death Literacy Survey results show?
The results from the Dorothy House’s Death Literacy survey are in, and the unique statistics from across 10 primary care networks make for fascinating reading; our data suggested….
A lack of knowledge of how to access palliative care in our local communities
Few people know how to navigate the healthcare system when someone is dying or trying to receive end of life care.
There is a need for people to have greater knowledge of how to navigate the funeral industry
However, overall Death Literacy is relatively high in the Dorothy House area and there is a tangible link between community and cultural events that talk about death and dying.
What Matters To You
Dorothy House’s adoption of the ‘What Matters To You?’ Charter requires us to understand the significance of social, as well as medical interventions. Using the data from this landmark survey will help us to tailor our services and community awareness events to the communities they serve, whilst also empowering each of our 10 local communities to shape the end of life services that matter to them.
