Chubby, obese, fat, bariatric, heavy. Finding the right words is just one of nurse researcher Caz Hales’ projects for improving the care of very large patients. FIONA CASSIE finds out more.
This is one of the findings of nurse
Dr Caz Hales’ PhD research into observing care of the clinically morbidly obese, which has led her to her co-founding an initiative to support very overweight patients.
The intensive care nurse says her interest was sparked by patients who were recovering from bariatric surgery sharing their stories of what had brought them to this point.
“Often it was just about wanting to fit in. This was their last chance, they felt, to allow themselves to fit in with society’s idea that people should be thin.
“That was quite confrontational for me… and I realised we really weren’t doing enough as health professionals to advocate for this patient population.”
Hales is co-founder of Bariatric Management Innovation (BMI), whose work includes ensuring swift delivery of the right-sized bed, chair, gown and other necessities when very large patients are admitted to Wellington Hospital (see sidebar).
Hales is currently on extended leave from her role as a lecturer at Victoria University’s Graduate School of Nursing. She and her BMI co-researcher Lesley Gray of the University of Otago, Wellington, are also surveying a cross-section of New Zealanders about the right words to use and are asking health professionals to don a ‘fat suit’ and head out into downtown Wellington.
Dealing with social sensitivities
Hales set out in her PhD research to see how nurses and doctors actually cared for the very large.
The research literature up to that point focused on nurses’ self-reported negative attitudes to morbidly obese patients and the prevailing view was that negative attitudes led to negative behaviour.
Hales decided to see what actually happened at the bedside and her ‘fly-on-the-wall’ research involved observing intensive care nurses and doctors caring for the seven patients with a body mass index (BMI) of over 40 who were admitted to a Wellington Hospital intensive care unit over a four-month period.
She spent 16 hours a day watching the nurses and doctors interact with patients, chat in the coffee room and interviewed 39 of the nurses and six of the doctors involved.
What she found was that, yes, negative attitudes towards obesity were expressed, but the nurses were extremely professional and provided respectful and very compassionate care to the patients in the study.
Whatever their personal thoughts, the staff were aware of the social stigma their patients experienced, which left them wary of offending them by saying the wrong thing or using the
“No-one really knew how to talk to somebody who was larger.” Should they acknowledge that the person was larger? If so, what words should they use?
“So the doctors and nurses said nothing. They pretended the person wasn’t large or fat. And the patient also pretended that they weren’t big so there was this mutual pretence.”
This led to Hales observing some awkward bedside handovers as the handover nurse tried to avoid the word obese, instead pointing to the word on the file or whispering it to her colleague.
Likewise, if the patient was too big for the equipment, rather than acknowledging the issue the nurses would dismiss it by saying something like “oh no, don’t worry, nobody fits this commode”.
Or if the patient referred to themselves as being fat the nurse would quickly dismiss that with “oh no you’re not” because they didn’t know how to respond without offending the patient.
Finding the right words
Discovering the social awkwardness faced by doctors and nurses who have difficulty finding the right words when caring for the very large has prompted a further research study.
Hales and her co-researcher Lesley Gray have been surveying people in supermarkets, the university, the hospital and shopping malls to find which words they regard as acceptable and which are unacceptable for the very overweight.
Ten words are on the list, including terms such as obese, morbidly obese, bariatric, chubby, heavy and fat. People are asked to rate how stigmatising, blaming or motivating these words are, which words they would allow a colleague to call them and which would be acceptable for a health professional to use.
Hales says they might find there are no terms that people agree on but if the research does come across words that most New Zealanders find completely unacceptable or acceptable then this can be used to inform nurses and doctors so that the care they provide is appropriate and respectful.
In the meantime Hales says the feedback she’s received from high-BMI patients she observed and worked with is that they prefer to be called fat than obese. Nurses and doctors might be trained to use the clinical terminology of obese, morbidly obese and bariatric, but that language is now associated with stigma, discrimination, and oppression.
“The biomedical language has become very politicised because it is used in health policy to name being large as a disease. And fat people don’t often consider themselves as being diseased.”
She says instead a common attitude expressed by very large people is: “This is who I am – I see myself as fat.”
When to use the right words
It is understandable then that health professionals can have difficulty finding the right words when working with high-BMI patients whose body fat levels can make routine procedures complex.
“You have to chose the words that most appropriately fit the clinical scenario that you are in, your understanding of the patient and the patient context,” says Hales.
So she advises health professionals to think through the appropriate words; for example, using the word ‘weight’ – one of the preferred terms for talking about someone’s obesity – can be confusing for a renal patient or congestive heart failure (CHF) patient with a very high BMI, because weighing patients and talking about weight to renal and CHF patients has a different meaning when talking about monitoring fluid levels in the body rather than fat accumulation and losing fat-related weight.
Another dilemma that nurses and doctors struggle with is when a person’s size should be acknowledged. Hales says if a person’s body fat creates issues with performing a care task or clinical procedure then it shouldn’t be ignored.
“Patients are absolutely aware that their size is challenging for procedures.
The patients I’ve talked to want honest conversations – they don’t want to have it brushed over and not acknowledged.”
But she suggests rather than using the word ‘fat’ as a blaming word – i.e. ‘it’s because you are too fat’ – to instead use it as a descriptor to describe the problem the nurse may be having with taking a blood pressure or doing a wound dressing. For example: “We are having this particular care issue because the fat on your arm (or the fat on your leg or the fat around your abdomen) is causing these particular challenges.”
Patients also told her that while they don’t want their body size brushed over when receiving health care they also don’t want it to become the centre of a conversation about losing weight.
While ‘when, how and who’ to raise the issue of weight loss is an important topic, Hales says it is not part of her work. “That’s a completely different area of research.” Her focus is on ensuring people with very high BMIs who come in to the hospital system receive respectful and equitable care, including meaningful conversations about day-to-day care practices.
Walking in another’s body
Helping health professionals to more fully understand and empathise with the lived reality of very big people is behind another research project in which Hales is involved.
She and co-researcher Lesley Gray have been asking healthcare professionals to don a simulation suit that makes “really little people large, and larger people really large”.
Once dressed up, they are asked to head out and take a ride on the bus, buy food in a supermarket and go to a café and order food.
“It’s been an extremely powerful study,” says Hales.
“One of the comments was that ‘you are the most visible person when you are out and about but you are made to feel invisible’. I think that is just extremely powerful for nurses to experience that.”
Putting on the suit has been so confronting and challenging for some research volunteers that they have declined to go out into the public. “I think that in itself is very powerful because people who are larger don’t have the choice of stripping off their fat and going out into society.”
While the researchers had hoped to have 10 people taking part in the ‘fat suit’ study, only five people participated, but they will also be interviewing those who declined to go out
The team is planning to use the suit for further research studies but meanwhile it is keen to put an actor in the suit when offering safe handling training.
“Instead of talking about the differences when you move a larger patient, you would actually have the suit with actor inside – who can play out some of those vulnerabilities – to make it really realistic for staff so they can think about maybe their own attitudes and how they engage with larger people.”
Hales’ aim remains to help health professionals offer the right care with the right words so that larger people receive the respectful and equitable care they deserve.
Goldilocks service: delivering a bed that is ‘just right’
Having a bed that fits and a chair you can sit in is a fundamental patient right, believes Caz Hales – along with the dignity of an appropriately sized gown.
One of the findings of her PhD observances of the care of high-BMI patients in a Wellington Hospital intensive care unit was that this didn’t always occur.
“Sometimes patients could be waiting up to 72 hours just to get a bed, never mind a commode.”
Some of these patients didn’t meet the arbitrary cut-off weight to receive a bariatric bed, but because they were short and wide they didn’t fit conventional beds and faced the indignity and discomfort of skin folds hanging over the sides of bed.
This provoked the formation of the Bariatric Management Innovation (BMI) initiative with research colleague Lesley Gray and Todd Bishop, the chief executive of Essential Helpcare, a company hiring out specialist healthcare equipment.
BMI’s first major service initiative has been with Capital & Coast District Health Board. Since last winter it has been delivering on-demand bariatric care bundles tailored to meet the size, shape, weight and needs of high BMI patients admitted to Wellington Hospital and other CCDHB services.
The care packages or bundles include essentials like an appropriate-sized bed and chair, disposable gowns and bedpans, along with pressure-relieving mattresses, slings, blood pressure cuffs and commodes.
The equipment is owned and supplied by Essential Helpcare, whose staff deliver the bundle – and explain how to use it – within an hour of receiving the request (the average time is 23 minutes). In the first 9–10 months the BMI service has supplied bundles for 64 patients, ranging from a very wide 106.5kg patient to a patient weighing 332kg.
Research on the partnership initiative between the DHB, Victoria University and BMI led to Hales receiving the DHB’s Excellence in Research award this year.