It is a typical Sunday night in the emergency department, and one of the nurses slaps a chart down beside me on the "blue desk" where we write up our notes. "Query constipation," she reads from the registration note. "Why would you wait in an emergency department for three hours if you weren’t even sure? And for constipation??"
At least 75 per cent of all patients who present to pediatric emergency departments are low-risk, meaning that they could be easily and appropriately seen in a walk-in clinic or in a family doctor’s office. While family doctors, like the rest of us, are in short supply, walk-in clinics in most Canadian cities are open into the evening hours and on weekends. The waits at these clinics are almost always shorter than ours, and the care provided for low-risk conditions is usually very good.
Yet emergency departments across Canada continue to be packed with patients with minor ailments, conditions that have been ongoing for months, and minor boo-boos.
What is going on?
Most of the time, the frustration evoked by low-risk patients in the emergency department is rather abstract. We in the biz tend to regard them with an almost anthropological paternalism, trying to find explanations for a parent’s choice to spend an entire evening just to get that three-week-old rash explained.
Tonight, though, I and others in the team have just come out of the trauma room where a 12-month-old baby with sepsis lies hooked to monitors, held by parents and observed by nurses. The adrenalin is still floating around the blue desk.
Sepsis is an infection of the bloodstream itself, the river inside your vessels that carries oxygen and glucose — and in this case bacterial invaders — to every cell in your body. It is a very frightening disease which evolves quickly; if treatment is started too late, it can have a devastating outcome. Thanks to widespread immunization, sepsis is a lot rarer than it used to be, but this child, despite having all her shots, has somehow slipped through the net.
Over the last hour we have obtained (with difficulty) an IV and blood work, injected her with antibiotics, pushed IV fluids and connected her to oxygen. We used words like "shock," "meningitis" and "life-threatening" to describe her condition and the risks she faced to two very worried parents.
The phrase "first do no harm" is nonsensical; in order to safeguard this child we have caused pain and emotional trauma to this entire family. Now, however, her condition appears to have stabilized, and the risk appears lower.
"I am glad you came in when you did," I tell them cautiously. "Your attentiveness to your child was really her best defence."
This is, in many ways, the sort of child the emergency medical system in Canada was made for. Yet in other respects, the tales this case will generate represent a critical problem for the way in which our emergency services are used.
We’re talking here about feedback. About the power and vitality of health-care memes, particularly dramatic "sticky" ones. About the significance of storytelling.
For example, take a typical (immunized) 12-month-old baby with fever. Perhaps three per cent of such children have a bacterial infection causing the fever, and most of those are slow-moving entities like pneumonia or simple bladder infections that will make themselves known to caring parents long before anything bad happens. The remaining 97 per cent of hot babies almost all have viral causes for their fever. Not only does nothing bad usually happen to these kids, there isn’t much anyone can do to change the course of illness.
Hot babies, though, are very frightening to parents, because they’ve all heard the stories of the child who had an awful outcome.
I could write very simple rules to safeguard hot toddlers and babies. In fact these are the ones that I give my patients in the emergency department:
- Is your hot child less than three months old? (If yes, come to emergency.)
- Does your child have a chronic condition like cancer, immunodeficiency or certain others? (If yes, come to emergency.)
- Has your child had the fever for more than five days? (If yes, either see your family doc or come to emergency.)
- An hour after acetaminophen or ibuprofen, does your child look pretty darned good (active and playful) despite the illness? (If no, either see your family doc or come to emergency.)
- Finally, how worried are you? (Depending on how worried, see your family doc or come to emergency.)
Five rules. I would guess, and this is just my own anecdotal reckoning, that if these rules were followed, 80 per cent of visits to emergency by feverish infants and toddlers would disappear.
That last rule, of course, is the rub. Because there is a catch.
One illness whose symptom is fever is famous for causing sniffles in the morning and admission to the intensive care unit at night. It is incredibly rare; out of 30,000 visits per year to our emergency department, we will see perhaps one case every year or two in an otherwise healthy child over three months of age. Outcomes, however, can be devastating.
What is this illness?
Sepsis. The same disease that afflicted the baby above.
The scary unknown
Parents don’t know what their child has when they arrive at our department, so the complaint they provide simply reflects their best guess at a diagnosis. We could write similar self-triaging rules for parents regarding abdominal pain ("constipation"), local skin infections ("ingrown toenail"), or respiratory distress ("cough"), and in general those rules would be very, very good.
Full disclosure to parents, however, requires that we add one big caveat: No matter what rule you use, no matter what complaint you come in with, there is a chance that something truly bad will happen.
Humans, particularly modern humans, don’t perceive risk very well. When we as parents hear of a bad medical outcome, we scrutinize it, gossip about it and shudder about the consequences. When we look in on our sleeping children, the memory of those conversations can easily pass before us.
We are a storytelling species; good stories "stick" to our memory. Drama, danger, tragedy and rescue are powerful in this regard. Thanks to the internet and Facebook, etc., we are becoming more and more addicted to information — and in particular to juicy, scary stories.
Like rats in the old Skinner box experiments who fed on opiates to the exclusion of real food, we are at risk of feeding on drama to the exclusion of common sense. It doesn’t matter that the risk of dying in a car crash on the way to the emergency department is probably higher than the chance that my hot toddler has sepsis. I can accept the risk I think I have control over, in order to exorcize the other.
What can we do about this? I’m not sure.
Separating intuition from anxiety
It is seductively easy to blame parents who are, after all, only worried about their kids. But expressing blame or assigning a cost to such parents might result in excluding from care some children with significant illness.
Bottom line: if parents are worried, their child should be seen. Parents have tacit knowledge about their children, an intuition that wise clinicians listen to. The trick is separating intuition from anxiety.
The blame can be more reasonably placed with parts of the health care system. Telephone medical advice lines, for example, work with far greater uncertainty than those of us who see patients face to face, so often default to the safest, most conservative response. This teaches parents that minor fevers, aches and pains need emergency department care, promoting dependency on "experts" rather than parent judgment.
Unfortunately, most of these lines are for-profit organizations, most require their staff to stick rigidly to a scripted algorithm (i.e. not utilizing the judgment of the nurse on the line), and most staff are not expert at pediatric issues. As a result, several studies indicate that visits to emergency actually go up after the introduction of telehealth phone lines.
Parents are often a lot smarter before telephone advice than they are afterward.
Acute-care staff like me have to recognize our role in fear-mongering, too. It is common, for example, for parents of asthmatic children to leave the emergency department with the impression that asthma is a rather hazardous condition. After all, their child was hooked up to monitors, given lots of medication, and often kept for long periods while nurses and doctors listen intently to the wheeze, judging carefully whether it is "safe" to send the child home.
Yet asthma is incredibly safe. In 2006, for example, Statistics Canada reports that despite the fact that some 10 to 15 per cent of all Canadian children had asthma symptoms and thousands visited emergency departments, only one died. Acute asthma needs to be managed, for the comfort of the child and to prevent more chronic issues, and yes, in case your child is for some reason high risk.
But a "dangerous disease"? If we as caregivers leave this impression, we should share the responsibility for parental paranoia. We need to walk the talk, not just blame the parent.
Health literacy and health costs
Clearly the issue is health literacy, and make no mistake, this has to be addressed.
While Canadians may be getting tired of hearing about it, it is absolutely true that population health costs, which include much more than simply what the government pays for, are rising at an unsustainable rate. We need to get better at how we use what we have. Period.
Maybe we should actually spend a bit more — but on education, with the expectation of reaping rewards down the line.
Imagine a process that starts where prenatal classes end off, where new parents can show up with their babies to hear about normal changes and minor ailments that they can diagnose and manage themselves. To learn, in other words, effective triage.
How about a dedicated educational campaign in high school so that young adults have a grounding in risk management and the proper use of a health-care system?
Why not, in other words, start to construct useful health-care narratives that display the realities of health, illness and risk, and place these in direct competition with the distorted, dramatic stories circulated by our media and our social networks?The younger me who might have been (okay, was) dumb enough to blame parents for appearing with low-risk illness has (I hope) learned his lesson en route to becoming a senior clinician. It is important to become wise in using the emergency resources we have available; wisdom, however, requires an honest discussion and a reasoned approach.
Immersed in the emergency department on a busy evening, it isn’t easy to see the solutions to all this, and that can lead to a certain degree of confusion and frustration. I pick up the chart for "constipation boy" and start down the hall. As I do, the family of my infant with sepsis is just coming out of the trauma room, with all the monitors and IV poles in tow, heading up to intensive care for the night. The parents have their arms around each other’s shoulders, and their hands on the stretcher.
"Honey," says the father. "I am just so glad we decided to come in."
So am I.