End of life care

The development of this film was funded by the Oxford Health Experiences Institute to be used in The Experience-Led commissioning (ELC) Programme.

It is a ‘trigger film’, intended to trigger a discussion between people, families, NHS staff and commissioners about how they can work together to improve health outcomes and people’s experience. The ELC Programme provides commissioning support to health and care commissioners in The NHS and beyond. ELC offers both outsourced commissioning support and an organisational development and coaching programme, including training and accreditation of ELC Practitioners and Facilitators so that commissioners can embed and adopt ELC as ‘the way we commission around here’.

We anticipate that the film could also be used as part of an experience-based co-design (EBCD). EBCD is a patient-centred quality improvement process. If you are planning to implement it in your organisation, we recommend you use the online EBCD toolkit to guide you. The Point of Care Foundation is also developing a learning programme on EBCD supported by NHS England.

If you plan to show this film, healthtalk.org suggest the person facilitating the session use the following introduction to set the scene.

This film was put together from analysis of a national sample of 95 people with a range of conditions talking about end of life experiences. Researchers at the University of Oxford collected interviews with people all round the country, many on video, some audio or written only. They present findings from these interviews on the patient information website www.healthtalk.org The interviews are not just about NHS care but also much wider experiences, for example their emotional reactions to the diagnosis, how the condition impacts on their lives, their thoughts about the future.

For this project, we looked at both our specific interview collection on end of life experiences, and interviews from other collections such as motor neurone disease and different cancers. We pulled out specific themes around experiences of services and ‘touchpoints’ where people come into contact with the NHS.

Obviously these are not people from your area and everybody has a different experience, though some patterns do start to emerge from looking at many stories. Some of the things they say you may think aren’t relevant to local services or what happened to you. But our hope is that listening to them will help you reflect on your own memories and spark some ideas for what could be done differently here.

There may be some where people are sad or angry about what’s happened to them. You will hear some negative comments, because we can learn a lot from looking at when things went wrong and what could have been done to make that a better experience. Even when patients are largely positive about the rest of their care, one damaging bad moment can colour the whole thing. But listen out for positive comments too, where people remember some small act of kindness or a particularly good moment that made all the difference to them.

The interview studies from which this film was made were funded by The Gatsby Charitable Foundation, the Motor Neurone Disease Association, Department of Health, Macmillan Cancer Support, and Cancer Research UK.

Our thanks to all the patients who took part in the interviews

“Inner Light” Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0

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