A disease by any other name…

Single Rose by Thor

 

As a UK medical graduate, working in a London Hospital, it is fair to say that my CV doesn’t contain a huge diversity of workplaces, or populations served.  However, it is striking how many different levels of health literacy I encounter within the working week.

I have had conversations with patients to correct the perception that oxygen delivered by face mask was being introduced directly into a vein, and also had conversations with patients about the finer points of pulmonary vascular autoregulation, as applied to their own illness.

Given the range of knowledge and experience of patients is so wide, it is essential to be able to evaluate this as part of a consultation.  There is little point launching into an explanation of why a certain treatment is being recommended or discussed if my patient remains completely mystified by what I think might be wrong with them.  However, my getting to meet a patient might well rely on their ability to interpret their own symptoms, and seek help for them.

A paper in the current issue of the PMJ explores this in a setting so far removed from my own that I thought I might not find a great deal relevant to my own practice.  I was pleasantly surprised to be proved wrong on a few counts.

The study is a qualitative exploration of glaucoma awareness and access to healthcare at a clinic in Northern Tanzania (Open access).

The first lesson I took was that qualitative research of this sort is hugely valid, and absolutely required, even in situations where one might think that discovering the opinions, and feelings of patients may be lower down on the research priorities than achieving wider ranging public health successes.  The paper reveals some of the reasons why patients have presented late to the clinic with symptoms that, one feels, could have been noted a little sooner…

“sometimes my wife asked why are you going to off the road”

The paper is rich with the difficulties encountered in accessing healthcare for glaucoma, and the late presentations start to become clear.  There are the expected problems of cost, distances to travel (151.5km on average!) and knowledge of the disease process itself, but the interviews revealed a wealth of other information that point to ways in which this service could improve – through improved health education, changes to operational policies to smooth the running of clinics for those who had travelled furthest, and utilising patients to spread information about a modifiable cause of blindness (a massive economic burden on family and community, especially in poor, rural areas)

The other key point I took from this, that has resonance in all healthcare settings was the use of language, and it’s impact on health literacy and efficacy.  Swahili is the main language of Tanzania, and there is no direct translation of ‘glaucoma’ into swahili.  The word is translated in different forms – contributing to the confusion of patients.

This is not a problem unique to non-English speakers though.  ‘Medicalese’ is a language we all use – it is often a matter of shame amongst the medical profession to admit that one doesn’t know the precise meaning of a medical term, and as such, we can use language as a tool to exclude others (intentionally or otherwise) from our conversations.  We do the same with patients – the art of the medical synonym is well practiced on the wards… ‘malignant, neoplastic, mitotic…’ and when we simplify into ‘lay terms’ we can cause just as much confusion:  ‘water on the lungs’  – pulmonary oedema? pleural effusion?

The use of language is to me one of the key aspects of communication that can influence the ability of patients to hear about, understand, process the implications of, and work with the possible solutions to their problems.  There are definitely times when my choice of words has been below par, and a less favourable outcome has been the same.  Language used in consultations is also key to establishing and maintaining the relationship between physician and patient.

The linked paper shows just why the appropriate use of a clear and unambiguous explanation of medical terms is so important.  There are wide-ranging effects of good and poor language, from the initial access to healthcare, understanding and using treatments appropriately, and thereafter in informal health promotion and education within a community.

Whilst I am lucky not to have to tackle consultations in swahili myself, I think it is right that we remind ourselves regularly of how foreign ‘medicalese’ is from the vernacular, and conciously tackle the use of sloppy terms that often only increase the confusion they attempt to disspate.