The way we use language in healthcare can help people to understand or it can cause additional confusion. It can open discussions or it can create barriers. In my work as a specialist midwife, every day I hear from people who say that they didn’t understand what a health professional has tried to tell them, or I realise that there has been fundamental miscommunication due to the way things have been expressed.
When you are faced with unexpected news about your baby during pregnancy, this can be extremely difficult to take in and to understand. Inevitably medical language has to be introduced, but every unfamiliar word which is introduced fills yet more brain space, and makes it more difficult to comprehend the whole of the information. We have all had the experience of reading or listening to information and being distracted by an unfamiliar word, or of misunderstanding the whole because of a single word.
There are so many examples of the challenges of language in healthcare specific to pregnancy and birth. I have been working with the team at MAMA Academy recently in their efforts to make professionals aware of the way that language can help or hinder understanding through their empowering parents campaign. A very common example of language leading to misunderstanding is in relation to screening tests. In these a screen negative result indicates a low chance of the condition being tested for and a screen positive is an indicator for additional discussion. Here the words positive and negative are used in the opposite way to their use in day to day language.
I am concerned by the number of parents who turn to various non-professional forums seeking clarification of something they have seen in their notes or that they have been told about their baby. I feel disappointed that the healthcare worker involved has not communicated clearly. On many occasions their initial confusion is then compounded by further misunderstandings and assumptions made by others, based on those people’s own personal experience and (mis)understanding. Surely as professionals we have a responsibility to check that people have understood what we are saying? My blog post last week about major abnormalities led to a (very nicely worded) criticism from someone I respect, because I used the term fetal abnormalities. My colleague felt strongly this language is inappropriate and felt I should have used the term fetal anomolies. Ironically, this was a very deliberate choice of language on my part, because I have met many people over the years for whom the word anomoly is unclear. I aim to use straightforward language in order to avoid confusion. In my experience, normal and abnormal are expressions that most English speaking adults understand easily, whilst anomoly is a term which is unfamiliar to many. Unfortunately specific words can be perceived to have a secondary or implied meaning quite apart from the original word.
In NHS screening tests, the word anomoly has been used for some time as an alternative to abnormality. Unfortunately, in my experience, this change of language has meant that women do not always understand the core purpose of the mid-pregnancy scan – looking for anything which appears different from the normal appearance. I have lost count of the number of times I have heard people say “I didn’t know they were looking for problems…” and it becomes immediately clear that they have not appreciated the meaning of anomoly in the pre-scan information. The reason for the changed used of language in the NHS was seeking to avoid possible negative implications of abnormal. Things can be different to the norm without that being a major problem. Initially I was in favour of the change of wording, more recently I am concerned that we may have made things more difficult in some cases. However, my piece last week was specifically in relation to very major issues which are life threatening or life limiting. I do not believe that there is any room for misunderstanding in such situations. Language in healthcare must primarily be chosen to enable understanding.
Rather than focus on a single word, I would like the focus to be on promoting understanding. I would like parents to understand that not all babies develop exactly alike. These differences may be just a curiosity and make no difference to the child’s life, some unusual findings will be seen on one scan but on later scans nothing unusual is seen. Other differences have major implications for the baby’s life. Parents need to know which of these we are talking about. They also need to know that normal appearances on a scan, or a low chance (screen negative) combined test do not be taken to mean that a baby has no health issues. None of us are simply normal or abnormal. We are each unique individuals. There are some issues that have major implications for life, and others which are just difference. Where each of us feel that the boundary is between acceptable and unacceptable difference is based on our own unique beliefs and life experience. To decide how to react to news of difference requires that you understand what the implications may (or may not) be. As a specialist midwife, my role is then to respect the parents’ views and to support them to proceed as they feel is best for their family.
I am always happy to talk to those who are feeling confused by what they have been told. I often feel that I am acting as a translation service, converting medical language into plain English. A single, free, conversation often resolves issues by allowing you to understand. If things are more complicated I offer an ongoing service to support you.