...Because medical jargon is a different language
In all professions jargon serves a number of positive purposes; a single word creates levels of understanding between those in the ‘know’ and therefore saves time. However, for those outside the profession it may as well be a foreign language.
I am not a medic although I have edited medical education magazines now for over twelve years. However, I was fortunate enough to be formally trained in immunology (at a time when most doctors were not). This was the perfect training ground for understanding a new language because out of all the ‘ologies, the jargon used in immunology is probably the most impenetrable. If you doubt what I’m saying try this relatively simple and recent example for size (with apologies to the authors):
To be fair, most doctors wouldn’t be able to grasp that immediately without a bit of head scratching, although I’d hope that they could get the gist of it, (if not please see me later!). In case you are interested, here’s the link: http://www.translational-medicine.com/content/7/1/18
I have chosen the title of the publication referred to above Journal of Translational Medicine for good reason. Translational medicine can either be seen as a natural extension of ‘Patient Choice’ policy, or an attempt to effectively remove all choice from the patient. The relatively new concept of ‘translational medicine’ potentially eliminates choice in medical terms. The objective of translational medicine is to be able to diagnose the disease objectively at an individual patient level and therefore scientifically pre-determine the precise treatment option that will be most effective in that individual case. It’s all in the genes. We are not a prostate cancer patient. We are patients with our own personal form of prostate cancer and therefore some treatment approaches may not be appropriate. There is little point in treating someone with a prostate cancer drug unless their cells have the necessary receptors. In breast cancer a modern example of this is the receptor HER-2 and hence the drug Herceptin. Not all patients with breast cancer have the HER-R receptor.
Translational medicine is therefore a major advance and will increasingly become the standard approach. However, there are still choices. For example, do I really need surgery, or am I better off continuing to take the drugs? What are the different drug combinations and what are their pros / cons? How does that affect my own set of circumstances?
There are as many barriers to understanding medicine as there are sentences using medical jargon. Looking at it from the other side, if you do not want someone to understand what you are saying you speak a different language. Any English person who has taken a holiday in Wales will know exactly what I mean! A better example is listening to your dentist talking to the assistant while describing the state of the inside of your mouth.
In both cases you perfectly justifiably feel like screaming: “Speak English!”.
Therefore, communication (a two-way process) is all the more important when trying to understand your own condition and your doctor has an obligation to ensure that you understand a) what is wrong b) the options available, and c) what is involved. Unless you can fully describe all three it is unlikely that you are properly involved in the decision-making process, let alone making a proactive choice of preferred treatment. On the other hand, isn’t that what we pay professionals for? Should we not just place blind faith in the expert? I know that I am often actively encouraged to do so by lawyers, but when I do I should have no complaint about the outcome or the size of the bill. Caveat Emptor! Or, the onus is on you if you do not understand what you are buying.
Recent political initiatives both domestic and international are all about making medical choice more transparent. For example, you can travel abroad for treatment under the NHS and increasingly there is a shift from ‘Prescription only Medicine’ (POM) to ‘Over the Counter’ (OTC). The mantra is that consumers (patients) do not understand all the implications and therefore the choice is not yours unless it is an OTC product and you are willing to pay for it. In the UK, although most would like to, pharmaceutical companies are not allowed to advertise their products to the public. The obvious worry is that the subsequent demand would bankrupt the NHS. To get around this problem of red tape, pharmaceutical companies naturally release ‘news’ items to the media in order to influence demand from the public. Unfortunately in these circumstances, the message is more influenced by PR and journalism than scientific and medical accuracy.
Americans are different
Pharmaceutical companies following Food & Drug Administration (FDA) approval of their products and under regulation are allowed to advertise DTC. As a result, sales of drugs and particularly ‘brands’ are far higher per capita. However, there is no NHS and therefore patients in most cases have to meet the cost themselves – and if you can’t afford it – you don’t get it. It is therefore not unsurprising that ‘getting ill’ is the prime reason for bankruptcy (or the US equivalent – Chapter 11).
So why is DTC advertising allowed in the States and not this side of the pond? Is it because Americans are better educated in medicine and therefore can be trusted to make informed decisions? Or, is it just a case of money? With a ‘free’ NHS are you likely to abdicate the decision-making and have blind faith in doc? Conversely, if you are parting with hard-earned cash, do you feel you want to delegate responsibility and prefer to have a ‘say’?
Regardless of political view, one thing does seem to be certain and this is that Americans in some aspects do appear to take their health more seriously. They introduced the smoking ban before us and ‘jogging’ before breakfast is practically mandatory. The patient-power approach is also reflected in the press and two headlines have recently caught my attention, these are:
“Do You Know What Your Doctor Is Talking About?” By Dr Pauline Chen in The New York Times
“Lack of health literacy can be fatal.” By Andrew Van Dam in Health Journalism
The first article informed the second and is a reflection of how both consumer journalists and journalism are taking their responsibilities seriously. I would urge any patient to read these articles because what happens ‘over there’ inevitably reaches our shores and ‘forewarned is forearmed’. Having said that, it is also interesting to see that the new Obama administration is adopting aspects of NHS style policies. Capitalism and socialism are not always happy hospital bed fellows (it’s the reason for having ‘private’ wards even in NHS hospitals!).
NHS and Private Health
In the UK it is possible to have your cake – and eat it. The NHS has effectively subsidised private medicine and as a result there are aspects of care that are the envy of the world. We have some of the best trained doctors along with top research facilities and this is possibly why so many medical and pharmaceutical companies have their HQ and research facilities based in and around London. The NHS is about the only employer I know that actively encourages senior staff to moonlight, and so private patients can benefit from the expertise knowing that the NHS is there to support both the doctor and often the financial overhead too. If something goes wrong, there will be a nearby NHS A&E Department. Of course, some more courageous doctors prefer to operate entirely privately, but these tend to be the exception.
To have a ‘say’, you need to be in the ‘know’.
The point is that if patients want to be involved in something as important as their own choice of treatment there needs to be two-way communication and this needs to be in plain English. And totalhealth is a good place to start the dialogue.