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Sensitive Services – what matters most in end-of-life care?

This week is Dying Matters Awareness week, designed to raise awareness of end of life care. Not an easy topic. The charity Dying Matters take a brave stance with their lines, ‘Let’s talk about it’, and ‘You only die once’. It’s an open approach to a difficult topic. And it’s a good approach. Patients should – if they wish – be able to express their experiences, no matter how emotive and intricate the issue.

It is about encouraging real patient stories to be told – freeing the individual’s voice, so that they feel comfortable to articulate, in their own words, what matters most to them. To achieve this we must ensure people are able to share their stories in a way that makes them feel at ease and in control. As researchers in this field we’re all passionate about our research being more than just words on a page, instead aiming for it to have a positive impact. For me, that means our work is used to drive better care.

All experiences matter. But when looking at end of life care we must remember that this will be one of the last experiences a person may have. It can – and will – have a significant impact on wider experiences for both the patient and the people around them.

Our work raises a key consideration when looking to deliver high quality end of life care.

Simply, care services do not go far enough in understanding, identifying and adapting to individuals emotional and support needs.

We have found upon diagnosis patients fell in to four categories each of which requires differing levels of support…

… At peace and accepting of what was to come…

… Unwilling to discuss but accepting …

… Showing anger and sadness but understanding the diagnosis …

… Denial of their diagnosis.

These cases more than any other highlight how health and social care is where the personal meets the professional, where systematic processes meet individual emotions.

Better understanding and identification of these states will help care givers plan and deliver their approach in a way that better meets people’s needs. Ultimately this will lead to better quality end of life care. We believe our approach to examining experiences will continue to build a bridge in the tricky space between services and sensitive experiences… One person at a time.

Tags: End of life care.

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