The language used during end of life care matters
The language we use to talk about end of life care matters because it conveys the values we attribute to life and death says lecturer at The Open University, Dr Erica Borgstrom.
A male born in 2014 to 2016 has a 21% chance, and a female a 32% chance, of surviving to at least age 90
“She’s poorly” — that’s a phrase I hear a lot in my research about palliative and end of life care. But what does that mean? It took me a while in my fieldwork in hospitals, hospices and care homes in England to work out that this phrase could be code. Code that someone was dying. In this article, I’ll discuss two different ways in which language is used in end-of-life care which may lead to confusion about dying: the use of euphemisms to address dying, and the negative language used around decisions to reduce medical intervention.
Firstly, there’s the use of ‘code’ language to say someone is dying, without specifically using words related to death. Code can be useful if you have sensitive information or you want to keep information between only certain groups of people. But using this kind of language to talk about end-of-life care can make it unclear for dying people and those close to them to know what is going on. It can also make it hard for teams to communicate well if they do not all understand that implicit code — such as using everyday language to describe something technical. And there are a lot of examples of unclear language in palliative and end of life care, where euphemisms are used either to make a ‘difficult subject’ easier or to obscure the lack of certainty there can be around death.
Rarely in the absence of medical treatment is there an absence of care. Indeed, often clinical and nursing care teams will think of other things that can be done during this time to support holistic care.
Some people argue that the use of euphemisms in England to talk about death means that there is a societal taboo around the subject. Claiming something is taboo implies that the mere mention of it may somehow bring misfortune. However, social scientists have been pointing out for decades that death is quite present in our everyday experiences — such as news reports about murders, obituaries for celebrities — rather than being a societal taboo per se. Instead, it is often the connection between death and the self that is not as openly explored, and that certain kinds of deaths, such as the ones most of us will experience for ourselves, have been ‘hidden’ away in hospitals and care homes. As such, some have argued that death has been hidden away because it is ‘dirty’ and not valued within our society.
The language we use to talk about end of life care matters because it conveys the values we attribute to life and death. One of my latest projects (Forms of Care) is looking at the language used to talk about what happens when decisions are made not to provide medical intervention. For example, there’s the cliché of “there’s nothing more that can be done”, said even as palliative care teams explore alternative options for symptom management. Much of the language around decisions like this are framed in the negative — withdrawing, withholding, de-prescribing — indicating that something is not being done.
There’s the implication then that medical intervention is inherently ‘good’ and thus, not providing interventions, is somehow ‘bad’. The emotive reactions to such a framing about intervention and care can be seen in the media reactions surrounding the Liverpool Care Pathway in 2012, where not intervening as someone was dying was equated to neglect. Rarely in the absence of medical treatment is there an absence of care. Indeed, often clinical and nursing care teams will think of other things that can be done during this time to support holistic care. So why do we let the language we use imply there might be?
Dr Erica Borgstrom is a lecturer specialising in the study of End of Life Care at The Open University. This article was previously published on OpenLearn in March 2018. Subscribe to our newsletter for more free courses, articles, games and videos.