'Palliative' or 'end of life'? Why it is important to say the right words

'Palliative' or 'end of life'? Why it is important to say the right words


Recently, as part of a film project, we posed the question to the general public: "What do you think and feel when you hear the terms 'palliative' and 'end of life' care?" The responses included: "Palliative care means you're not getting better, doesn't it?"; "End of life care sounds a bit frightening"; "Palliative is gentler but more confusing" and "I've got no idea".


These responses will be fed into our new project on terms used by professionals. We will be working in partnership with the National Council of Palliative Care who lead the Dying Matters Coalition. The evidence we collect will be used to consider whether there might be other, more readily understood terms or phrases that could be used instead of "palliative" and "end of life care". And if we can't find more acceptable words, we will disseminate our findings so that those working in health and social services are aware of the confusion, bafflement and misunderstanding that these terms can create for people.


Recent reports, such as More care, less pathway - which followed the review of the Liverpool care pathway - and the Keogh report, emphasise the urgent need for clear, compassionate communication, especially when people are being cared for in the last years, months and days of their lives. It can be summed up in the story we heard about a woman who was told that her husband was receiving "palliative care". She found out two weeks later that this meant he was dying. One can only imagine the damage that was done because she did not understand what the term meant.


Our project aims to capture, understand and explore what people think and feel when they hear the terms "palliative care" and "end of life care". We'll be using a wide range of ways to engage with people, in particular digital media and film. We would like to hear views from a wide cross-section of both health and social care professionals and the public. We also want to reach out to those who are isolated and those who are not connected to the internet. We will be speaking to people in a range of settings, for example shopping centres, care homes, youth clubs, universities and colleges.

We are also speaking to people who are loosely linked to end of life care projects, such as those working for insurance companies in the social care sector.


We want to improve the communication between those who give care and those who receive it. One person we spoke to, misheard us and thought we'd asked her about "palace of care". She described a beautiful place where worries and cares could be hidden away; the idea was appealing. However, too often, misunderstanding creates anxiety and fear. That's why we are proud to be undertaking this work. Together we can help to improve the care that people and their families receive at the end of life.


By Pamela Holmes


The Guardian, 24th of January, 2014.


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