'Doctors discuss my daughter like she's nothing'

A doctor in Cambridge is spearheading a project to help to reform "blunt" medical language that patients and their families can find upsetting.

Ethicist Zoe Fritz said language that "casts doubt, belittles or blames patients" was long overdue for change.

Sixteen-year-old Josselin Tilley from Wiltshire has charge syndrome that reduces her life expectancy.

Her mother Karen said Josselin's death was often referred to in correspondence "like she's not a person.

"It's not person-centred at all, it's like she's just nothing."

The example she gave was an extract from a typical letter in November that she was copied in to by a community paediatrician addressed to colleagues.

"Death below 35: On discussion with Josselin's mum early death has been discussed with her, and there is plan, discussed with Josselin's mother about a wishes document being done."

"Discussion with family: mode of death: This will be included in the wishes document."

Mrs Tilley, from Westbury, said she objected to the use of language that "very bluntly discusses Josselin's death like she's something going off in the fridge".

She said she had endured 16 years of such medical correspondence.

HCRG Care Group said it was unable to comment on the specific case but said "we would never want people to feel offended".

HCRG chief nurse Sarah Wardle said: "We don't always get it right and for that I am sorry but I do know professionally and as an organisation we're really keen to listen to improve all of the time and we're really open to feedback and to changing how we work ... (it's) really important to have a shared understanding with the patient and family about phrases and terms that they're comfortable with ... we would never, ever, ever want people to feel offended we all share the same aim to provide the best possible experience and quality of care and working together with families is absolutely the best way of achieving that."

Doctor Fritz said the reason she and doctor Caitriona Cox were running the campaign at Cambridge University was because they recognised language regularly used by clinicians was often problematic for anyone outside of medical practice.

"Even just (the term) presenting [a] complaint. Patients coming into hospital with whatever's bothering them we [doctors] talk about as a complaint and I think that infantilises the patient. They're not complaining when telling us what's going on."

She said it was a complicated issue though.

"Doctors are trying to gain a shared understanding with them [patients] about what the problems are and we think we're doing a good job copying our patients into our letters, but the letters have to have really clear medical information for our colleagues and there's where the tension is because there is a language we use as doctors... that when you try and turn it into plain English you can lose something."

The team has invited patients and their families to share examples of problematic medical language they have encountered, and what form of words they would prefer medics to use instead, to help feed into the campaign.