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Celebrating ‘Living Well to the Very End’

Angus Wiltshire 09 March 2017

Though end-of-life care is not usually a topic of celebration, in this blog Angus Wiltshire celebrates the work that our ‘Living Well to the Very End’ teams have been doing in end-of-life care.

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End-of-life care is unique. You only get one chance to get it right. The fixing and repairing have stopped. The whole of their care is now committed towards one aim – the patient’s and their families’ wishes.

End of life care is not an area normally associated with celebration. However the projects run by our eight teams taking part in the living well to the very end programme were something worth celebrating!

On 23 February, we hosted a celebration event, giving all the teams the opportunity to showcase their work. One presentation that stuck in the memory was that from the Livewell Southwest team from Plymouth. Their work has taken place in the forgotten and ignored area of end-of-life care resulting from substance misuse. It is an area that often lacks the ‘clinical’ environment that normally accompanies end-of-life care.

The typical end-of-life pathways and care plans do not apply to an unexpected death that has been the result of an overdose. Choice over dying at home is not an option for those who are homeless. In order to understand how their service could improve, the team needed to ask relatives about their experiences and explore what could be improved. Through the process, they found that many of their initial ideas – such as support groups – did not seem to resonate with the people they asked and spoke with.  As a result of the project, they are now going to produce much clearer information for families about post-bereavement support, establish a regular reflective space for staff and provide level 1 bereavement training for their team.

These kinds of tangible improvements for patients and families are typical of what we see when encouraging teams we work with to try new methods of understanding the experience of care.  The process may not always be straight forward, but quickly staff see how they can improve their service and feel more motivated than ever to provide the best possible care.

What now

The teams work in a broad range of settings, from cardiology, to substance misuse, to elderly care. However all have made a noticeable impact on those who interact with the services, now and for the future.

The teams will continue to explore the experiences of their patients and will continue to find innovative and often simple solutions that make a huge difference to their patients and their families. Maybe that is the most crucial lesson to be taken away: that seemingly small changes can make an enormous difference to the experience of the patients and their families.

The teams from both Oxford and Southampton have now created reserved free parking for the relatives of patients who are approaching the end of life. This may seem small, but removing the burden of finding and paying for parking at such a pressured and stressful time is invaluable.

It is often so hard to see clearly from the inside. It is so rare to get the chance to step back, and even rarer to see things from the perspective of the patients and their families.