I had a brief message exchange with someone who has firsthand knowledge of the aftermath of an ADVERSE DRUG EVENT.
Stephen's Voice – Suicide Prevention is a Facebook page dedicated to raising awareness about the risks of, what the medical community refers to as, an ADVERSE DRUG EVENT. They're also on Twitter, but if it were me, I wouldn't be on either one—I'd be a fetal position, unable to move, let alone care about whether an ADVERSE EVENT happened to anyone else or not.
I think this speaks to the incredible resilience and strength of Stephen's family.
I messaged the page because their social media copy read, "… after suffering a catastrophic [reaction] to Sertraline," but it was missing the word "reaction," and I wanted to know why they chose that term rather than "side effect." I'm uninvested either way because it's their story. They get to share it however they feel best serves the good work they're doing. I simply wanted insight into how they viewed what had befallen their family—although the adjective is on point.
If you or someone you love is given a medication for a non-fatal condition, and that drug goes sideways, resulting in the worst clinical outcome imaginable—I think catastrophic would be the word I'd use, too.
The woman I messaged told me she hadn't really thought about what the differences between the two terms were, and I'll admit, it hadn't occurred to me, either, not until then. What I do know is the medical community continues to use pale, ambivalent, and slippery language when medical errors lead to unimaginable losses for patients and their families.
It leaves me wondering if Stephen's family received any acknowledgement from his medical providers. A card, perhaps.
KNOWLEDGE = RESPONSIBILITY
Sometimes I get accused of hyper-focusing on language for the sole purpose of wiredrawing or parsing. But here's the thing: the devil is in the details and language is "the details." The metonym, "fine-print," means the stuff, the language, we often don't pay attention to.
One of the biggest barriers to cultural assimilation is the language barrier. Knowing the "native tongue" can be the difference between "enemy" and "friend," and historically language has been used to exploit people who don't have "a command" of it.
All the more reason in a legal dispute to drown the opposing party in reams of paperwork, filled with words and language. All the more reason to teach Latin to the clergy and keep "the language and word of God" from being known or spoken in the "common tongue."
It hasn't gone unnoticed by me that medical terminology hearkens back to that time, when only the ordained were allowed to speak it, then for God, and interpret His will to the masses. Anyone caught learning or teaching the holy tongue was accused of heresy, and this mentality wasn't just an earmark of Christianity. Just ask Prometheus. So, why would immortal, infallible beings (whatever the belief system) care if their creations had knowledge?
A fun question to explore another time.
Meanwhile, patients armed with medically correct language often get slapped with a nasty Personality-Disorder label, because for some reason, the MD-ego quickly bruises when the layfolk know what "contusion" means. You know, I miss the days of "complexes." Comparatively, they were benign, yet so spot-on. There was the Cinderella complex, Electra complex, Oedipal complex, Don Juan, oh, and the God comp—oh.
I see what they did there.
I pay attention to language because it matters, and it's also sometimes an indication of what's not being revealed, and even more interesting, what's actively being hidden so a certain few get all of the benefits of their knowledge but get to shake all the responsibility.
Talk about a Cluster-F.
ALLERGY: REACTIONS GONE WILD
I decided to do some research and see how the medical community delineates between a REACTION to a medication, versus a SIDE EFFECT. Oddly, there aren't many articles that parse it out because "allergy" is often entangled into REACTIONS, even though they aren't synonymous.
You can have REACTION to a drug that's not an allergic REACTION:
Someone takes Percocet after they get their wisdom teeth removed and they puke up their shoes, so the Doc switches them to Lortab, and they tolerate that fine. Same class of drug, different "model."
So, that's an adverse REACTION to Percocet.
Here's an example of a drug REACTION that's also an allergic REACTION:
A patient with a UTI is given Cipro, and within a day or so, they develop hives, their body temp drops, and they get to an Urgent Care facility.
The latter isn't a "phone call," wait-and-see situation, is it? No. It isn't. So, after some epinephrine shots and the patient is stabilized, the Doc marks that class of drug an allergy, and that means doesn't matter how new or neat the new "models" are, anyone who knowingly gives that patient a drug in that class is risking the patient's life.
Just to be clear, you can't have an allergic REACTION to a drug and say it wasn't an adverse EVENT or REACTION, and while I realize that may seem too obvious to mention…
You'd be surprised.
FOREKNOWLEDGE v. HINDSIGHT
I found this article from Pharmacy Times on the significant differences between REACTION and SIDE EFFECT. What stood out for me was predictably, families and victims of "adverse drug reactions" use language that more accurately reflects the true nature of what happens, such as catastrophic. Horrific. Violent. Terrifying.
In the above article, author, Shelby Leheny, Pharm D, B.S., (Doctor of Pharmacy Degree), believes:
"… pharmacists are currently under utilized[sic] as they play a critical role within the healthcare team as the true drug experts."
From what I understand, her education focuses solely on a drug's pharmacological mechanism in the human body, whereas a physician's educational focus is mainly on how the body works and ways in which pathology, injury, or illness present in it. Yes, reductive, but we don't have all day, do we? No.
So here's a summation of her main points.
According to the author a drug REACTION is viewed as an ADVERSE EVENT and falls under the umbra of a REACTION.
ADVERSE EVENTS are undesired results, and they fall into a couple of subcategories: the predictable (TYPE A) and unpredictable (TYPE B). They can be mild, moderate, or severe, and the latter three determine the prescriber's next step or steps.
Ideally the doctor and patient know the possibilities of a Type A REACTION in advance, and therefore react accordingly.
So, a mild reaction for a short-term medication could be drowsiness, so adjust the dose or don't go skateboarding after your first pill. A moderate reaction could be nausea and headache, so avoid greasy foods for a week. A severe reaction is sometimes life-threatening or can be life-altering, like permanent brain damage from anaphylactic shock.
Type A REACTIONS can be mitigated through changing the dose, the subtype (fast-acting v. extended release) or switching to another medication within the same class.
So this is where it gets rather murky. If someone has a severe REACTION, wouldn't this necessitate crossing that drug class off the "OK" list? One would assume this crosses over into the Type B REACTION, because if there's even a possibility of a severe REACTION based on any known factors, I don't think a Doc would risk it, and neither would a patient.
But it's all about foreknowledge and predictability, isn't it?
Type B REACTIONS are, according to Ms. Leheny, "completely unpredictable and have nothing to do with doses."[sic]
So these REACTIONS are based on factors neither the patient nor prescriber could possibly foresee, including the list of foreseeable REACTIONS (you see where I'm heading here? Good).
Type B REACTIONS are based on too many variables to predict and are indeed as random and bizarre to the prescriber as to the patient.
Doc: "I see. Fell right off, did it? Yes, well, let's have you come in tomorr—oh, sorry, right now, yes, we'll get it reattached and, uh, obviously, you should discontinue Vigoralis immediately."
The author of the article presents a POV with which I happen to agree:
"A patient may experience an adverse event due to the healthcare provider’s lack of knowledge of the drug and the medications[sic] complete mechanisms."
Unfortunately, this also proves true when it comes to SIDE EFFECTS.
TO BE OR NOT TO BE, THAT IS … A SIDE EFFECT?
When doctors and patients are both ignorant about or misled into believing that certain SIDE EFFECTS are so rare, the likelihood of them occurring is exceedingly small, they, and we, are lulled into a false sense of safety and confidence.
Along with the (sometimes) intense desire for a medication to work (maybe you're running out of options to deal with severe acne), the real picture of SIDE EFFECTS gets obfuscated by our hope and the Doc's desire to help us.
Especially when we believe, as the author believes:
"Side effects are tracked and investigated extensively during clinical trials before entering the market."
Pretty to think so, Ms. Leheny, but incorrect.
Most BLACK BOX WARNINGS come after the drug has been released into the market, and while SIDE EFFECTS are cursorily addressed in commercials and shiny pamphlets, it's only when the most catastrophic REACTIONS occur that they get reported to the FDA.
In other words, if our doctor doesn't know, doesn't warn us or succumbs to publication biases (among other industry blinders), and if we don't wanna know, we are not warned. Not until a family—meaning a whole bunch of families like Stephen's—lose someone they love.
So, when it comes to SIDE EFFECTS, Ms. Leheny states in the article something I've found to be true in my own personal journey through the medical quagmire iatrogenesis plopped me into: the medical community's underutilization of healthcare folks with the expertise, training, and education in pharmacology, the way medications interact with and in the human body, and whether they play well with other medications for that individual's
Frankly, we trust our pharmacist probably more than all my docs put together, because in a way, he IS all of them, put together.
Meanwhile the author explains a SIDE EFFECT with these main points:
Unlike adverse events, SIDE EFFECTS are "mostly foreseen," unintended reactions to medications.
Patients ought to be alerted to the possible SIDE EFFECTS of the drug.
SIDE EFFECTS resolve in/with time.
So, in the case of discussing the risks of treating an illness or condition using medications, SIDE EFFECTS are quite literally the star of that show, the Belle of the Ball, the devil and the details and the fine print because at the end of the day, kids, the benefits of taking a medication ought to far outweigh the risks of no treatment or another treatment strategy besides pharmacological intervention.
In other words, the risk v. benefits conversation, when looking at pharmacological intervention of any kind, whether short-term or long-term, hinges on that medication's SIDE EFFECTS, which are known, foreseeable, and weighed against all other alternatives.
All that said, I just have one question:
At what point did we decide that "suicide" was an acceptable SIDE EFFECT of medications used to treat non-fatal conditions such as depression?
When did we decide permanent brain damage was an acceptable risk when treating any non-fatal illness?
Of course, the indignant argument is that left untreated, depression or other mental health issues can also lead to suicide. Fair enough.
Suicidality, then, can sometimes be a SYMPTOM of clinical depression.
Again, and I don't know why this has to be said:
If someone is suffering, in any way, from a mental health concern that leads them to feeling suicidal, explain to me how "EVEN MORE SUICIDAL" sounds like an acceptable risk.
Ever notice the passive language and "voice" of drug ads?
"…these and other SIDE EFFECTS have happened."
"…a worsening of (the thing you're taking the drug for) has happened."
It reminds me of all the TV shows and movies when the cheating spouse gets confronted by their other half, and they reply with:
"I don't know why…it just…happened."
Yeah, no, we totally get it. It was "Go Commando Tuesday" at the office, and you fell down a flight of stairs, in a skirt, right onto Brad from accounting, who was napping, pants-less, at the foot of the stairs, fully erect while dreaming of number-crunching.
I mean, yeah, these things DO happen, don't they.
NO. They freaking don't "just happen."
TIME HEALS MOST WOUNDS
Drug REACTIONS happen.
SIDE EFFECTS do not happen to you unless you were not properly informed that they COULD happen to you, and/or you were not properly prepared for how they present, feel, or "show up" when they DO happen to you or someone you love.
And too often, we're not given the real picture, the real choice, the real anything and our prescribers choose for us by not telling us what the trade-offs might be, how common certain SIDE EFFECTS are. To be completely fair, prescribers oftentimes don't know what you're getting into, either. And that's their job, not ours, yet here we are.
How about some radical honesty from our prescribers:
"In 6 weeks you might feel a bit better, but your penis might not work, ever again. Can you live with that? Brad?"
"Adverse events require interventions" writes Ms. Leheny, "whereas most SIDE EFFECTS spontaneously resolve with time."
Losing your loved one, or dying by suicide, is a SIDE EFFECT that no amount of time resolves, Ms. Leheny.
And whether a REACTION or a SIDE EFFECT, it is a catastrophe, no matter how you spin it.