Putting the ‘person’ at the heart of patient centricity – why language matters
The irony of patient centricity is its name – that a movement designed to help people look after their own health is described in terms that disempower.
Health literacy isn’t just about using short sentences, we also need to think about how the words used are received and perceived.
We’ve known we need a new word for ‘patient’ ever since we started moving away from the ‘doctor knows best’ era.
Julia Neuberger, chief executive of the Kings Fund at the time, wrote: “(It) conjures up a vision of quiet suffering, of someone lying patiently in a bed waiting for the doctor to come by and give his or her skill, and of an unequal relationship between the user of healthcare services and the provider.
“The user is described simply as suffering, while the healthcare professional has a title, be it nurse or doctor, physiotherapist or phlebotomist.”
The word comes from the Latin ‘patiens’, from ‘patior’ meaning to suffer or bear, which has no place in a patient centred world of patient activation.
In fact, patient empowerment is something of a contradiction in terms, and over the last decade or so, advocacy groups have realised this.
Diabetics are people with diabetes, MS patients are people with MS. Because why should they be defined by the condition they live with? And how can they feel empowered if they are classified as a passive sufferer?
A new guidance document, published recently by NHS England, advises clinicians to also choose their words carefully.
Language Matters: Language and Diabetes, explains that the words used by healthcare professionals can have a profound impact on how people living with diabetes, their family and friends, experience their condition.
“At its best, good use of language; verbal, written and non-verbal (body language) which is more inclusive and values based, can lower anxiety, build confidence, educate and help to improve self-care,” said an introduction to the guide penned by Anne Cooper and Bob Swindell, who are living with Type 1 and Type 2 diabetes, respectively.
They went on: “Conversely, poor communication can be stigmatising, hurtful and undermining of self-care and have a detrimental effect on clinical outcomes.
“The language used in the care of those with diabetes has the power to reinforce negative stereotypes, but it also has the power to promote positive stereotypes.”
This, they went on, hasn’t been embraced within the wider healthcare community, “despite the growing trend of placing the ‘patient’ at the centre”.
That growing trend is based on an ever-expanding evidence base that recognises people with long-term conditions do better when they are involved in their own care.
“When… messages are perceived negatively, whether it is intended or not, this can lead to feelings of shame, guilt and resentment.
“People who are ashamed of a condition will find it much harder to engage and manage that condition proactively,” said Anne and Bob.
Language Matters, which highlights that ‘patient’ implies someone is not actively participating in their care, concentrates on diabetes. But it could equally be applied to any long-term condition.
Across therapy areas, there can be something of a double standard in language – the sector can refer to people as “living with X, Y and Z” of a condition to their faces, but as ‘patients’ when talking amongst themselves.
Of course, it’s not just ‘patient’. There’s a whole dictionary of words that are used in healthcare settings every day, despite their negative connotations. Compliance, adherence, even ‘disease’ are examples.
“I hate ‘sufferer’, ‘lives with’ is better and my child has Type 1 and is not a ‘diabetic’, would you introduce another child as a ‘myopic’? I doubt it very much,” said a parent of a child with Type 1 diabetes quoted in the guide.
I remember as a cub reporter describing a young man with Down’s syndrome as “suffering from” the condition.
In a call from his mother, I was asked if I really thought he was suffering. I’d met him, I’d interviewed him – at what point did he seem as though he was burdened by his condition?
He wasn’t. He was happy and full of life, but I used the term without even thinking. More than 15 years later, it still gives me pause to think when at my keyboard and I’ve never made the same mistake again.
It’s not easy to stop using phrases that are cemented into the public consciousness.
But by working with advocacy groups and clinicians to understand the implications of the words we use, we can make sure we are all speaking the same language, all of the time.