To read the "PROPO - Annual Report 2009", please click here

To read our Europa Uomo Manifesto in your own language, please click here

The patient's language

It is often said that at the moment of hearing the diagnosis, the medical facts and technicalities associated with treatment go over the patient’s head. In my opinion, this situation cannot, at least generally, be explained only by the "old-fashioned" theory that every man goes into shock when hearing that he has been diagnosed with prostate cancer.

Could the failure in getting the information through also be that, in these situations, the physician and patient are speaking about the same issue, but using different languages?

In other words, do questions occur to the man (and possibly family members present) that the medical jargon does not answer? In short, I would like to ask whether the verbal, and indeed the written diagnosis, continue to have different information contents for the physician and the patient. Increasingly detailed pathologist statements, blood tests, other possible examinations, and recorded significant symptoms naturally form the factual basis upon which the physician will usually base the diagnosis. It is upon these data that the physician will position the individual case within the framework of general knowledge of the disease and its treatment possibilities. However, to the man who has just been "declared" a prostate cancer patient, instead of medical curiosity, his primary concerns relate to questions about his immediate future and lifestyle.

The above example could carry a broader significance when carrying forward issues associated with the patient's quality of life.

These days, with information overload on cancer from all possible sources, even patients with plenty of get-up-and-go may be overwhelmed. A common feature of this information, which is often apparently anonymous and flamboyantly titled, is that it is usually based on single studies, technical innovations, developmental steps of pharmacotherapies, or other new information often "declared" universal. This open avalanche of information is often characterised by the use of the jargon of professional language, which, to the average layman, can be gobbledegook.

Compared to such effusive professional information, the natural language of the ordinary person and patient may start to feel inadequate. Is it becoming a general feeling that an ordinary person does not dare or is not able to speak about being ill and having a disease to just anybody, because he/she is not sufficiently familiar with the terminology? We must not give in to such unhealthy linguistic over-medicalisation developments, which at its worst will increase the disenfranchisement of patients. In our current so-called information society dominated by experts, we as patients should continue to speak boldly and shamelessly in our own language. We should participate and express ourselves, not simply listen and answer when asked. We should talk about our wishes, our fears, how we are coping - everything in our lives, and not be humbled or baffled by "cold" professional information.

In our everyday lives it is far more valuable to us as patients to understand our own individual situation and possibilities, rather than trying to penetrate continuously all kinds of "fancy" fragmentary and detailed information which might become quickly obsolete. The patient’s increasing ownership of their illness and treatment should not demand a continuous medical education. We should call a spade a spade, and this applies to the treatment of illnesses. However, we must also accept that the same fact can have a different meaning depending on one’s standpoint.

From the point of view of a patient organisation, there is naturally no conflict for us in following and supporting scientific information that aids us, and pass it on to patients in a language they understand.

We should create and develop together our own Patient's language, which speaks the language of life.

Hannu Tavio