The language of children’s palliative care

As Stephen Greenhalgh, chief executive at St Catherine’s Hospice in Lancashire, highlighted in his article ‘Word matters’ on ehospice yesterday, terms such as ‘palliative care’ can be a barrier to some families assessing these services. 

As part of a discussion paper on the language used in children’s palliative care, Together for Short Lives is asking whether the phrase ‘supportive care’ should be used instead – Stephen suggested the phrase ‘comfort care’.

This is just one of a number of questions posed by the national charity for children with life-threatening and life-limiting conditions, as it sets out to establish a common understanding of the terms used in children’s palliative care.

The charity published this discussion paper following an international discussion about the terms used in children’s palliative care across the world, held at the 6th International Cardiff Conference on Paediatric Palliative Care in July 2012. It is interested in hearing any feedback on the paper, or general comments on the language of children’s palliative care and how it has developed over the past 30 years.

The paper discusses the use of phrases such as ‘life-limiting’, ‘life-threatening’, ‘life-shortening’ and ‘terminally ill’, and the way we describe different phases of illness.

Other questions asked in the discussion paper include:

• What do we mean by children’s palliative care?
• Should we use terminology that focuses on needs rather than conditions? Eg should we say ‘children with palliative care needs’ rather than ‘children with life-threatening and life-limiting illness’?
• How comfortable are we with using terms such as ‘terminally ill’. In what contexts might we use this terminology?
• Should we use terminal care and end of life care interchangeably?
• Does ‘life-limiting’ mean the same thing to families and professionals from different backgrounds?
• Is ‘life-shortening’ a term that is easier to understand?

Different words can mean different things to different people, but it is important that the language used is meaningful to the entire range of different audiences – families, providers, commissioners, researchers, the general public and potential funders. Precise definitions are also important when trying gather data and carry out research, and for service planning purposes.

The discussion paper can be downloaded from the Together for Short Lives website, and comments on the paper and the issued raised can be can be sent to Lizzie Chambers, development director at Together for Short Lives.

Comments will help feed into the fourth edition of the ‘Guide to the development of children’s palliative care services‘, as well as the glossary of terms provided as part of the publication ‘A family companion‘.

EDITOR: We are also very keen to hear your views on terminology in palliative care, either children’s or generally. Submit your comments below (you will need to log in/register if you haven’t already done so).