Women who have lost a baby often dislike the language used by medical professionals and would prefer the term “pregnancy loss” over “miscarriage”, research has found.
More than six in 10 women (61%) who had lost a baby between 18 and 23 weeks of pregnancy said it was unacceptable for doctors, midwives and nurses to use the word “miscarriage”.
Only 22% thought that was an acceptable way to refer to the loss they had suffered, even though that is the medical and legal definition in the UK of a baby who dies before reaching 24 weeks’ gestation. Large majorities also disapprove of “intrapartum foetal death” and “intrauterine death”.
Four out of five (82%) women would prefer staff to use “pregnancy loss”, according to the research, which was led by Dr Beth Malory, a lecturer in English linguistics at University College London.
Malory began looking into how women felt about the clinical language used around baby loss after having a daughter born in the second trimester of pregnancy and seeing how often complaints were aired in online communities, such as the Facebook group of the baby charity Tommy’s.
“‘Pregnancy loss’ is much more broadly acceptable than ‘miscarriage’, which prompts really mixed feelings and which a lot of people actively dislike due to connotations of blame, failure and so on,” said Malory.
She and fellow researcher Dr Louise Nuttall found “widespread dissatisfaction” among women who had lost a baby, with “lots of words and phrases that trigger trauma”.
Their research, among 391 women who had lost a baby, also found that 84% regard “incompetent cervix”, “cervical incompetence” or “cervical insufficiency” as unacceptable.
Most felt the same about “foetal death” (53%), “intrapartum foetal death” (70%) and “intrauterine death” (66%). Malory suggested “pre-term cervical shortening” as an alternative.
Mehali Patel, the research manager at the baby loss charity Sands, said: “The findings show that the words used by health professionals when talking to parents about pregnancy loss can have a big impact on their mental and physical wellbeing.
“For someone whose much-wanted baby has died, at whatever gestation, hearing words that are clinical, cold or cruel can leave them feeling even more emotionally devastated on leaving the hospital.
“Some bereaved parents carry an enormous amount of guilt after loss, so it’s vital that the language health professionals use does not initiate or compound the sense that someone’s body failed them and their baby, as this can make it harder to cope and in the worst case scenario lead to significant mental health issues.”
There is also widespread opposition to staff using phrases like “products of conception”, “tissue”, “products”, “pregnancy tissue” or “contents of the womb” when referring to the baby who died. An overwhelming majority of women affected want “baby” to be used, the research found.
Patel said: “Health professionals talking to parents about pregnancy loss should always take time to listen to the words parents use and aim to mirror this, for example whether someone talks about their ‘pregnancy’ or their ‘baby’.
“Technical terminology or medical terms that are less than compassionate, such as ‘incompetent cervix’, should not be used when talking with parents. The research shows that commonly used words like ‘miscarriage’ may be unhelpful to some people, so the key is to be led by the parent’s wishes.”
When Malory asked women what words or phrases they found acceptable, most said they approved of “stillbirth” for a baby lost after 24 weeks gestation, “ectopic pregnancy” and “recurrent pregnancy” for a baby lost before 24 weeks.
Separate research published on Thursday found that women in the US who suffer from endometriosis and uterine fibroids are 31% more likely to die early, mainly from a gynaecological cancer.
Endometriosis occurs when tissue that is similar to the lining of the womb grows in other places, such as the ovaries or fallopian tubes. It is already associated with a higher risk of developing conditions such as high blood pressure, heart disease and some cancers.
The study, published in the BMJ, found that the rate of all-cause death before the age of 70 was two per 1,000 person-years for women with endometriosis and a lot less – 1.4 – for those who did not have it.
