In Depth
Weekly checkup
Story Time
How disease and risk are constructed in our communities
Feb. 20, 2008
By Dr. Brett Taylor
It is just before midnight. The ambulance is five minutes out, carrying a four-year-old with a known history of asthma who awoke with marked respiratory distress. The ambulance personnel have reported that the child is alert but breathing 50 to 60 times per minute, working hard, and that the O2Sat (the amount of oxygen in her blood stream) is abnormally low.
The charge nurse has cleared a bed and another nurse has been pre-assigned; I have been notified. The medical student, who just moments ago had been denying boredom in a wholly unconvincing fashion, is now bright eyed at the prospect of seeing some real medicine.
Sounds like a good opening for a TV show, right? Except that, like a TV show, it's a construct, a fabrication. There really isn't much of an emergency here.
There are four stages in the development of an emergency clinician, and those stages are strikingly similar whether we are talking about a physician, a nurse, a paramedic, or any of the other related health-care professions that work in my area.
Stage one is characterized by idealism and fear, by the certainty that you play a critical role in the survival of individuals in your care, and, further, that you aren't quite smart enough to be in that position.
Stage two is characterized by idealism and confidence; you have skills now, you can probably resuscitate anything that walks, and you are even more certain that your presence is vital to a good outcome.
Stage three is the one where reality steps in, and the uncertainty returns. You start to grasp the whole picture, you begin to recognize that for at least 75 per cent of all patients who come to the ED, your presence is, well, completely inconsequential, and that for a number of others the "therapy" you have been trained to offer doesn't have a lot of evidence to back it up.
In stage three, you begin to recognize the same types of patients over and over again, many who come because their child has a cold, or a sniffle, or a rash. Those, in other words, who will ultimately be just fine, and for whom you have nothing to offer, and you wonder, sometimes with a bit of heat on a busy night, just what the hell they are doing here occupying your time.
Stage four is story time.
Story time is when you come to grasp that the shape of an illness is not an event defined by physiology or science, but rather is a narrative that has roots in the media, community gossip, marital communication and deep parental fears. Stage four is when you recognize the critical role of information in the genesis, and treatment, of illness. When you see that the majority of Canadian health care dollars are spent to treat what I call memetic disease.
I entered stage four in my late thirties, after I had been practicing for a decade, after one of my patients who "were going to be just fine" turned out to have a very serious illness. I have no idea if that is a normal, or delayed, or even precocious course. I have certainly seen the rare medical student who already seems to grasp this, and, conversely, have seen others retire never having quite got it.
Maybe (probably) there is a stage five as well. Ask me in another decade.
Richard Dawkins coined the term "meme." Dawkins pointed out that an idea, like DNA, can self-replicate; it can change as it moves from mind to mind, and only the most successful ideas are retained. Many are lost, because they just don't make sense within the environment (the minds) in which they live. He called these info-structures "memes" because, like genes, he argued, selection pressure would cause them to evolve.
For example, if you enjoy a new song, you remember it; it has reproduced itself within your mind. By humming it, you might succeed in transmitting it to someone else. If you are a musician, you might produce your own cover and this new "mutant" version of the song might become even more successful than the original. Or, if you have my music skills, the version you produce might be so bad as to be obviously and immediately unsuccessful, and become extinct.
Dawkins has written more on this and many other topics; he is a marvellous, provocative author, and I highly recommend him.
Take a look at the information elements of a child's emergency visit, and you can identify a number of distinct memes. "Risk" is one, as is "effective therapy" and "need" among others. Every parent in a pediatric emergency department carries the meme of illness; treatment is given by those who carry the meme of treatment efficacy.
The visit, in other words, is built on the memes available to the parent and subsequently directed by those available to the health care workers. The whole event, and often even the disease itself, is composed of and directed by ideas; it is a "memetic" process.
Where do these memes come from? Well, they spread through the community using communication in any form as a vector. Parents and clinicians who hear about illness within their community share these stories ("infect") others. Those aspects of the story that are most compelling stick with us, and the memes that compete most effectively for the limited attention span and memory space are those that entertain, or frighten, or intrigue us the most.
Dawkin's point, I think, would be that the meme can be considered to be a selfish entity in its own right, existing only to replicate. Memes don't have to be beneficial; in fact there is evidence that we actually tend to retain those that aren't.
In 2004, Alan Kamhi, a PhD in communication disorders, published a paper titled "A meme's eye view of speech language pathology." He noted that successful memes "typically provide only superficially plausible answers for complex questions" (emphasis mine). In other words, as humans, whether we are patients or caregivers, we tend to be infected by simple, intuitive memes, whether they happen to be right or not. We shun complexity, even though it might lead us to wiser, more fruitful behaviour.
I have never met Alan Kamhi, but I bet we would have a lot to say to each other over a cold beer.
Because, you see, the example I gave at the beginning of this article is very real; a scenario just like it will happen virtually every day during "asthma season" in any pediatric emergency department in Canada.
The memes of risk, treatment and need are obvious. They just happen to be, largely, wrong.
The risk of death or need for intensive care is very low in asthmatic children. For example, American data shows that the death rate for asthma in hospitalized children is less than three per 10,000. If these figures apply to the hospital in which I work, we would have to wait 40 years to experience an asthma death on our wards. To put it another way, after 23 years as a trainee or practitioner in acute care pediatrics, including five years running a children's asthma clinic, I have never presided over an asthma death.
The meme of risk with respiratory conditions is deeply ingrained. It is transmitted by stories arising from rare personal experience, circulated in the community and reported in the media. What makes this meme stick? Fear and love, which are, frankly, the emotional staples of parenthood.
Health care workers, critically, are no less susceptible to this than the general public.
The meme that our treatment improves these asthma "risks" is somehow not reduced by the fact that studies supporting treatment efficacy are sadly lacking. Somehow, the meme of effectiveness trumps the memes of science, probably because, superficially, it just doesn't "make sense" to us. We "know" that what we do matters, we don't care that we can't prove it.
Many presentations to the ED (fevers and seizures, for example, as well as many others) demonstrate these false memes of high risk and treatment efficacy. Most of the time, the children presenting with these conditions are at extremely low risk, and no effective treatment that further reduces that risk exists.
Clearly all memes aren't negative; what I am saying here is that some memes guiding medical care are wrong, and that correcting this takes an understanding, not just of the science, but of the way in which ideas propagate through a community.
Emergency departments should be locations that enhance some memes and actively seek out and destroy others. We should be "info-inoculators" who act to make our patients and staff resistant to sensationalist, frightening stories that generate false memes, and sensitive to those that represent sober, considered risk assessments. But the fact is, we are often too busy fixing what ails you to spend much time on information management.
We have our own, internal processes for our staff (and these can always be improved), but reaching out to the public in a meaningful way in a busy ED is difficult.
Maybe we shouldn't be trying to. Medical memes are generated, largely, by using narrative. We are story-telling beings; compared to other species on the planet, this is quite possibly the only distinctive quality we have.
>Maybe the best setting for deliberate, considered meme manipulation is elsewhere, outside of the clinical setting, in the media, for example, or on the web. Maybe we should demand from our information sources that they engage, as we have, in evidence based processes, deliberately avoiding the sensational except, perhaps, to put the context of reason and experience around it.
Whatever the process we engage, as health-care workers we need to start with ourselves. If we transmit overblown, inappropriate memes of risk and need, we have only ourselves to blame when a frightened public misuses our preciously limited resources.
I think we need to fight memes with memes. Maybe what modern medicine really needs is a good PR team.
Brett Taylor is an associate professor of pediatrics and emergency medicine at Dalhousie University. He works as an emergency paediatrician and researcher at the IWK Health Centre in Halifax. He is in the process of obtaining a Masters in Health Informatics, also through Dalhousie. His website for parents is available at www.thevirtualpediatrician.com.
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