Entitlement
Anyone who has ever taken a class in medical ethics knows about the concept of 'justice' as it applies to medicine. Justice is one of the four prima facie principles of ethics (the other three, if you're interested, are autonomy, beneficence and non-maleficence). Justice can be described as the fair adjudication between competing claims. And what does this have to do with what I'm rambling about today? I'm glad you asked.
Recently, I've noticed an increasing sense of entitlement when it comes to Canadians and their health care. Many Canadians living today don't remember a time when there was no universal health care system. I know I don't. And I'm thankful for it. Although it has its flaws and omissions, I love the fact that everyone walking into the emergency room is treated the same. Basic health care is guaranteed for all-- at least in theory. And serious illness or accident doesn't automatically mean a six figure bill.
Recently one of Canada's national newspapers ran an article hidden deep in the first section about a 40-something year old man who had been diagnosed with terminal lung cancer. The article focused on his delayed diagnosis. Apparently, after a lifetime of being otherwise healthy, he developed a chronic cough. Although he had none of the symptoms that are often considered the 'red flags' that would raise suspicion for cancer, this cough persisted through various failed treatments and investigations. Early in the investigation of the cough, a chest x-ray was performed. It was clear. By the time the cancer was diagnosed it had metastasized throughout his body. The article concluded with the man's family doctor apologizing to him for missing the diagnosis, and the patient lamenting the health care system for not investigating his cough aggressively enough to diagnose his cancer.
Another example I heard of second-hand. A woman's husband had been diagnosed with esophageal cancer and she was understandably devastated. She was angry with their family doctor, who she believed had been 'covering up' his cancer with anti-reflux drugs rather than taking his complaints seriously. Had the doctor acted sooner, she believed, her husband would have been diagnosed while the tumor was much smaller and more easily resectable.
These two cases have a lot in common. In both cases, the eventual diagnosis was a rare condition-- particularly in the age group in which these two men were diagnosed. In both cases, there were many diagnoses that were much more likely. And in both cases, the standard of care was met. The first case could have been easily explained with a diagnosis of chronic allergic rhinitis. Particularly after the initial chest x-ray was clear, without any weight loss, night sweats, fevers, smoking history or other aspects that would be more likely to suggest serious illness, a chronic dry cough in a healthy young man is many times more likely to be an allergic rhinitis or reflux. Both of which, although there are treatments available, can sometimes be very difficult to control.
In the second case, again the red flags just weren't there. Although the wife complained that the family doctor just 'covered up' the problem with medications, if the reflux responded to medication that should be diagnosis enough. The standard of care is not to scope everyone who comes in with symptoms of reflux, but to save the invasive testing for people with other worrisome symptoms-- trouble swallowing, weight loss, a history of lye ingestion (okay, now I'm reaching). But the reality is that most people with early esophageal cancer DON'T show any symptoms. That's one of the things that makes the survival rates for esophageal cancer so poor. My favorite source of clinical practice guidelines, the GAC Guidelines, clearly states that in the absence of dysphagia, bleeding, weight loss, choking, hoarseness, and chest pain, no further diagnostic testing is indicated for cases of GERD that respond to medical therapy.
In both of these cases, the patients felt that they deserved further testing. They feel angry and cheated by the system that is supposed to ensure their health. And although I understand that people given diagnoses such as this (and their loved ones) often have a knee-jerk reaction to find someone to blame, it makes me sad that this blame always seems to fall on the shoulders of family doctors.
One of the many problems with a universal health care system is that it is, by definition, universal. Everyone should be treated equally, in theory. So every 40-year-old with a cough should have a right to the same investigations. Depending on the situation, that often starts with eliminating the scary things and fixing what can be fixed. In someone who doesn't have any red flags, and who has already had a clear chest x-ray, expecting the medical system to pay for a bronchoscopy or equally invasive low-yield test is unrealistic. In the second case, a system that sent everyone with symptoms of GERD to a surgeon for endoscopy would not only create horrendous wait times for endoscopy, but would also be prohibitively expensive. A system which allowed everyone to be investigated without compelling indication to do so wouldn't be sustainable. This will mean that some cases will be missed. But it will also save much unnecessary testing, particularly invasive testing which isn't without risk itself. The key to screening for disease is to balance out the sensitivity of the test with the specificity. That means taking into consideration things like the prevalence of the disease, the potential for meaningful intervention (i.e. there's no point in detecting a disease early that we can't do anything about anyway) and the cost of the test. This doesn't mean much when the diagnosis missed was you or someone you love, but that's the way it works.
And unfortunately, the family physician is the gatekeeper. The one who decides who warrants further testing, and who doesn't. Although there are guidelines to fall back on, in the end it often comes down to a gut feeling-- is there something about this person's complaints that just doesn't sit right?
The problem is, what's best for society isn't necessarily what's best for the individual. And medicine isn't just a science, but an art. But in my opinion, both of these patients were treated appropriately. What happened to them sucks, no doubt. I wouldn't wish cancer on anybody, particularly not lung or esophageal cancer. But there is no one here to blame. So maybe we should stop looking.
10 Comments:
Hey,
Great post. I just discovered your blog today and am very impressed. It is wonderful to read! Keep up the good work, you are a hero.
10:06 PM
ptbncbqKubler Ross. It seems that the doctors are being blamed unfairly, but in reality I think the families just need someone to blame. They're angry and have not yet begun to get through the Kubler Ross stages. Once they begin to move through the anger stage they might be more capable of dealing with these problems.
Yes it sucks, but this is when society needs to understand why what was done was actually correct and not due to negligence. Here in America that has been lost and CYA testing is out of control.
10:42 PM
Right on, Dr. Couz. I bow down to you on your soapbox.
In contrast to your examples where a patient was not investigated "enough", I recently had a patient who smokes and had a sore, tender, swollen calf. I did a U/S to rule out DVT, and it came back negative. Then the patient was actually angry at me for being wrong and "not knowing" what was going on.
Sigh.
12:20 AM
Sugar, I thought this was going to be a post about entitlement. Did I miss something?
Mis-diagnosis and delayed diagnosis happens here in the States as well. It happens all the time. What's that got to do with National Health Insurance or the lack thereof?
Of course you're right that what's best for an individual isn't always best for his community - that's why there's such a thing as political philosophy - these questions aren't easy to solve.
But my question returns: what's this got to do with patient entitlement, or socialized medicine, or even with Canada?
best,
Flea
6:44 AM
I thought the link with entitlement was pretty clear-- both of these patients felt that they were entitled to much more testing and investigations than the symptoms warranted.
8:40 AM
Nice post
Much of what you said, sadly, applies here in the UK, too. Nice to see it verbalised so eloquently.
Cheers
4:56 PM
Couz-
You've been t a g g e d !
Merry Christmas a bit early!
12:47 AM
...the family physician is the gatekeeper. The one who decides who warrants further testing, and who doesn't. Although there are guidelines to fall back on, in the end it often comes down to a gut feeling...
You might want to reconsider the 'gut feeling' diagnostics. Another reason I promote second opinions.
Excerpts:
"Since the 1980s, Gershon's colleagues have zealously embraced the notion of "the little brain in the gut," as it's affectionately known. "What Mother Nature had done, rather than packing all of those neurons in the big brain in the skull and sending long lines to the gut, is distribute the microcomputer, the little brain, right along with the gut," says Jackie Wood, a neurobiologist at Ohio State University."
"This miniature central processing unit, whose 100 million-plus nerves number more than those in the spinal cord, carries out many of its daily chores without guidance from the brain. "Suppose the gut gets a message that the pressure is up in the stomach. The brain doesn't get its hands dirty with that kind of nonsense–so the gut takes care of it," explains Gershon. Not only does the gut direct its own show, he adds, but its spidery projections trickle into neighboring organs, commanding the pancreas and gallbladder to aid with digestion."
"Though able to run itself, the little brain does stay in close touch with the big brain via 1,000 or so nerve fibers. Scientists studying this relationship have discovered that the gut-brain connection is at the heart of some of the most visceral human emotions. A "gut feeling," for example, isn't just a poetic conceit used to convey intuition. It arises from the biological interplay between these two intimately connected brains, says Emeran Mayer, a gastroenterologist and professor of physiology at the University of California-Los Angeles. When faced with an anxiety-ridden situation, the big brain sends urgent messages to the little brain, which begins orchestrating a physical response, read as gurgling or "butterflies" in the stomach. These sensations are recorded in an "emotional memory bank" residing in the big brain, says Mayer, and the next time the big brain makes a decision in a similar situation, it's not based on some intellectual calculation. Rather, it's instantaneously formulated from this catalog of previous bodily responses–"gut feelings"–stored in the brain."
Source, U.S.News & World Report
12:58 AM
Wonderful post. Sometimes it happens so. Bring such things to light.
4:08 AM
To me the examples used by the press fall under the category of shit happens. I wouldn't be so flippant if I wasn't a cancer patient in the U.S. whose prognosis would have been much better with an earlier diagnosis. I guess I feel like I earned flippant rights, not through any effort of my own but because of being at the wrong end of the shit.
I have always had good health insurance (unlike so many in my country who can't afford it). I was even referred to a specialist by an alert family doc but when the specialist didn't pursue it and I figured I was safe because I saw a specialist, the ball got dropped. I think I got standard of care but there were some unusual aspects to my presentation that the specialist missed. Plus I got an attitude and swore I'd never see another doctor in that specialty as long as I lived (yep, dumb me).
My point is shit happens everywhere and I think it's a shame that the press would blame it on universal healthcare which I wish we had here. I have too many friends without good health insurance and when I get to where I can't work, I'll be caught between a rock and a hard place since my health insurance is through my job.
Anyway, I admire countries that have made universal healthcare a right.
11:47 PM
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