End of Life and palliative care: Thinking about the words we use

10 December 2014

New film from SCIE and NCPC

Recent reports* have highlighted examples of very poor care for people who are dying. Poor communication has often been at the root of the problem. People in the final stages of life, along with their families and carers, do not always understand that they are dying. We often hear the terms ‘palliative care’ or ‘end of life care’ for the first time when someone we know is dying or will not get better.

A new video, launched today at the 9th Annual Conference on Dementia and End of Life, addresses this by looking at the words that care and health staff often use when someone has been given a terminal diagnosis or is dying. “Thinking about the words we use” is launched today by the Social Care Institute for Excellence (SCIE) and the National Council for Palliative Care (NCPC).

People were asked what they thought and felt about the terms ‘end of life’ and ‘palliative care’. More than 1000 people responded to a survey. The video, which uses both film and animation, reveals the views of the general public, health and social care professionals and people who use services.

Here are just three of the responses from professionals and the general public.

  • “Communication is absolutely vital”
  • “People talk about things like ‘passing over’ or anything that doesn’t involve the word ‘death’”
  • “’End of life’ is a frightening phrase. ‘Palliative’ is gentler but must be explained properly”

The film looks at how people are first confronted with this terminology. It might be when a professional speaks to them; or it might be on signs in hospitals and other care settings. This, at a time when people – and their relatives - might be confused, angry and in the dark about what to expect.

SCIE’s Chief Executive Tony Hunter says:

There can be a lot of confusion when these terms are used; the terms aren’t bad in themselves, but it’s clear from our evidence that health and social care staff must be clear about what’s being said. Of course it’s tempting to use jargonistic phrases or anything without the word ‘death’ in it, but our work suggests that this can make the end of life care experience even more of a challenge for people and their carers. This film is a great introduction to how care professionals can address this issue.”

Claire Henry. Chief Executive of the National Council for Palliative Care says:

Communicating clearly and compassionately makes an enormous difference, especially when people are in their final days, weeks or months, which is why it’s vital that when terminology is used, it is clearly explained and understood by all involved. We are delighted to have had the chance to work with SCIE on this important project, and very much hope the new film helps professionals to talk more sensitively about dying with the people they are caring for, and their families.

The film makes the case for practitioners to communicate how much they care about the person who is dying; as well as being clear about what they’re doing to help and support the person, and their friends and relatives. Practitioners need to ask themselves whether the words they use convey this compassion. They also need to check with those they are caring for, that the information they are providing is clear as well as compassionate.

Key messages for care professionals include:

  • When speaking to a person who is dying or their relatives, understand the impact of the terms used
  • Where possible, try to explain things in plain English, rather than automatically using potentially unfamiliar terms
  • Regardless of the terms used, always check what the person has understood from the conversation
  • Always speak in a kind and caring way to the person who is dying, as well as to their relatives and friends

The following professionals will find the film useful: Care staff, social workers, care managers, carers, community nurses and nursing staff.

* 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.

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