Language around baby loss is still causing harm, says new report

Some of the words used by healthcare professionals to describe pregnancy loss are still making grief and trauma worse despite long-term calls to avoid insensitive terms, say researchers

Researchers have urged healthcare professionals to think carefully about the words they use in connection with baby loss, to protect women and birthing people from unnecessary confusion and distress.

A report from University College London says the language used to describe pregnancy loss can be ‘a critical factor’ in how severely people are affected psychologically by their experience.

The study, led by Dr Beth Malory at UCL and supported by Tommy’s, involved interviews with 290 people with lived experience of pregnancy loss and 49 former healthcare professionals.

Some of those with lived experience said words such as ‘miscarriage’ and ‘incompetent cervix’ made them feel guilty, while the use of terms including ‘blighted ovum’, ‘empty sac’ and ‘chemical pregnancy’ implied they had failed or that their baby had never existed.

People also described their distress at hearing ‘abortion’, ‘feticide’ and ‘termination’ in connection with the loss of a much-wanted baby.

Some found it difficult to understand what was being said about their care, which made it ‘frightening’ or ‘confusing’.  

The research highlights the risk of even greater difficulties for people who don’t speak English as their first language.

The study is the first since 2005 to gather evidence about language around pregnancy loss in healthcare settings in the UK. The UCL team found many of the words judged as inappropriate then are still being used almost 20 years later.

The researchers also found there was no agreed way for people affected by pregnancy loss to talk to their care team about how they wanted their experiences to be described.

However, there were improvements at some sites. Some healthcare professionals practised ‘reflective listening’ - paying close attention to what women and birthing people said and letting them know they had been heard and understood.

The report calls for more flexibility to accommodate the wide range of emotions felt by someone experiencing pregnancy loss.

In other recommendations to healthcare teams, it says:

  • Be aware that language matters – the words you use can deeply affect someone’s experience of pregnancy loss, so use the same language they do.
  • If in doubt, ask how someone wants you to talk or write about their experience and their baby. This helps you understand their feelings and choose the best words for them.
  • Once you know how someone is feeling and thinking about their loss and their baby, think about using language that ‘frames’ your conversation in the appropriate way – for example, by replacing very clinical words in a report with more gentle terms.
  • Respect their preferences. Don’t use language that conflicts with how someone has described their experience or their baby - for example, by using impersonal language about their baby when they have given their baby a name.

Lead author Dr Beth Malory said: 

“These findings really show just how important language is in pregnancy loss care, and the testimony of those who took part in the study illustrates the long-term impact it can have on someone experiencing pregnancy loss.  

“Our evidence clearly indicates the steps we can take to improve language during and after experiences of pregnancy loss and lays the groundwork for a more conscientious and compassionate approach.”

Dr Jyotsna Vohra, Director of Research, Programmes and Impact at Tommy’s, said: 

“We know from our communities that some of the words still used routinely to describe experiences of baby loss can be deeply upsetting.

“There is no language that can take away the pain, but the trauma and grief from this loss can be made worse if described in ways that feel uncaring and unfamiliar.

“We welcome the recommendations in this report and hope they will inspire change where it is needed, and soon.”

We're here for everyone, no matter where you are on your pregnancy journey. Our midwives are available to support you via email or the phone, during and after pregnancy and loss, and our pregnancy and baby loss information and support resources are available whenever you need them https://www.tommys.org/pregnancy-information/help-and-support

Tommy’s offers advice for family and friends about what to say to someone who has experienced the loss of a baby https://www.tommys.org/about-us/news-views/what-say-someone-who-has-lost-their-baby