Hear hoof beats? It Might Be Zebras.
Hear hoof beats? It Might Be Zebras.
Read this. Pass it along. Maybe save a life.
I didn’t write any posts in December and January because unfortunately I had a “very meaningful” interaction with the institution known as “American Health Care.”
The title of this post comes from an aphorism popular in medical training, strongly emphasized to students. Outside Africa and perhaps only in America, students are drilled that “when you hear hoofbeats, think horses not zebras.”
It means look for common causes of a patient’s symptoms, not exotic ones. if you tell your doctor you have had recurrent headaches it’s better that they talk to you about tension before testing for hemochromatosis.
In many cases, this makes sense. But only up to a point. If doctors don’t have clear and accurate patient information, time to think critically, and awareness of their own limits, this simple slogan can kill.
Here’s an example of this rule of thumb inappropriately applied:
Me: “Doctor I hear hoofbeats. I was attacked by killer zebras 5 months ago. I think they’ve come back.”
Doctors: “Oh, horses cause hoofbeats.”
Me: “But I took a very long airline flight to a distant country.”
Doctors: “I don’t think that would make a difference.”
Me: “I see a lot of grassland, unfamiliar trees, and giant termite mounds.”
Doctors: “Horses wouldn’t cause that to happen.”
Me: “No, it’s the other way around – I think I’m hearing zebras, not horses. Zebras that could kill me.”
Doctors: “Well there are also a lot of things that can cause hoofbeats. Bison, for example. I’ve never heard about zebras around here.”
Me: “When I look around, I see giraffes. At night I hear hyenas. I’m not in Kansas anymore. When I was here before a herd of zebras almost killed me. I need an expert to find the source of the hoofbeats and whether the zebras are going to show up again.”
Doctors: “Hearing hyenas? Here’s a good ear wax remover. Perhaps you are mentally ill. It’s completely unlikely there are zebras here in Kansas.”
This absurd exchange, fictionalized from an actual encounter at a “top” university medical center, is not an exaggeration.
After this horrifying experience I had to become my own guide, cutting through a thorny thicket of Internet medical research trying to prove to doctors that zebras were a reasonable source of the hoofbeats - because I was (figuratively speaking) in Botswana and not Kansas. I had to read my own radiology reports and medication guides to diagnose and resolve my condition on my own, which very possibly saved my life.
Simple facts, when put together, should have made it obvious to the doctors that killer zebras were very possibly nearby.
Why couldn’t the doctors do this? They certainly are not stupid.
It’s because doctors are trained according to narratives and incentives that emphasize:
- Speed. Nobody has any time.
- Authority. To be efficient The Voice of Authority must dominate the patient interaction.
- Certainty. Doctors must believe they are right, almost no matter what.
You don’t want your doctor dawdling if you’re bleeding out. Speed requires command and control. Doctors are trained to issue pronouncements that patients will believe and directives that patients will follow. Taking command means making critical decisions in changing conditions, and doctors can’t be second-guessing themselves.
But this only works if doctors’ systems of record-keeping and communication work, and if there’s a system of checks and balances to ensure there are guardrails in place on this high-speed, high-stakes obstacle course where running off the road can be fatal.
Given that those conditions are not met, assuming horses, running at top speed, asserting unquestioned authority, and acting with absolute certainty are not appropriate for every patient all the time.
This is the reality of the illness-industrial complex.
Doctors’ time, attention, mindset, and priorities are managed according to the needs of “medical services organizations (including insurance companies and other parasitic institutions)” who hire “medical providers” to “provide medical services,” sold to “consumers” as a “product” at the lowest cost and risk to the top of the food chain. These priorities often go against patients’ best interests.
If a patient’s needs are not within the boundaries defined by this system they must make a major investment in time, risk, and dollars to have those needs met. This is “burden shifting” – making individual patients take on a good part of the load of getting the job done so upper levels of the hierarchy have it easier.
This is the same hyper-capitalist cost-and-liability-externalization that makes you bag your own groceries for free or suffer phone trees in the hopes you’ll just go away. It is what it is, and your life may depend on knowing how to deal with it. If you are in a situation the system is not designed for, you will have to push and fight to get a good outcome. I was an idiot. I was unprepared for this when I had my encounter.
So, as a service to others who still believe in Marcus Welby, MD and Doctor Gregory House, here are some insights hard-earned by my experiences:
1. If you feel that you are having a serious medical problem, assume you are until it’s proven otherwise.
2. Unless you’re in an immediate emergency, prepare for any medical encounter as if you were going to meet with your boss.
Walk into the appointment or the emergency room with an attention-grabbing, compelling headline statement that will get attention without being excessively alarmist.
Prepare a concise elevator pitch describing what the problem is and what help you think you need.
3. Maintain credibility and be precise. Once you lose credibility with a doctor, that impression will go into an indelible ledger of your encounters, other doctors later will rely on it, and you are more likely to be dismissed in the future.
Everything you report will be written into that record and very likely incomplete and/or inaccurate in important ways.
Take notes and review them with the doctor before you leave. Politely insist they report your impressions and not just theirs in your medical chart. If possible, have your notes scanned in.
It is a complicated legal process to try to correct or amend your medical records and your request can be denied.
4. Be prepared for “medical gaslighting” – it’s a killer and a big enough problem to be called out in the Business Insider, Psychology Today, and the Journal of General Internal Medicine.
Remember that a doctor’s inappropriate minimization of your symptoms is probably not maliciously intentional, but being dismissed until you die or become maimed is horrific torture, not just for you the patient, but also your survivors
Good doctor-patient communication may help avoid gaslighting, but don’t be lulled by bland superficial “active listening” techniques. It’s easier for them to say “I understand – that must feel terrible, and I’ll refer you to the pain clinic” than to do the difficult work to diagnose something nonobvious.
5. Create documents, e.g. an advance directive, that will authorize someone to advocate and intervene in your health care, if necessary, even if you aren’t totally incapacitated.
6. Have a roster of friends and family you can select from so someone can join you for every non-routine medical appointment and be present every day – around the clock if possible - during a hospital stay for something serious.
This person needs to take notes, catch mistakes you make in talking with medical staff, ask questions, and support you in every nontrivial encounter with staff.
This person must be empowered to come into a medical encounter to offer opinion, push back on an unproductive process, clarify what you are saying, or otherwise constructively intervene.
7. Consider hiring a professional private health care advocate to assist you. You will have to pay for this service. Of course.
8. Come to every encounter with healthy skepticism about the doctors’ mindset, overall work environment, biases, training, and empathy.
9. Keep this in mind: hundreds of thousands of “adverse events” occur in health care annually in the US.
This is because attention and investment aren’t allocated to making improvements.
Accident rates are apparently below the risk-management threshold where repercussions to executive management stimulate change.
Refuse to become a victim of sloppy, incomplete, rushed, or negligent medical care.
Here are some resources to help you. Good luck.
30 years of research from the NIH about medical errors
Patient advocate certification – this is only one site out of many claiming to be a gatekeeper for medical advocates. There is no formal authority over this role so use caution and do your due diligence.
…you get the idea.
California’s Advance Health Care Directive form
Some facts and myths about Advance Health Care Directives
Information on California’s AHCD laws
Portal to the world of correcting or amending your medical records
Code of Federal Regulations on correcting or amending your medical records
If your medical record is so inaccurate it poses a risk if other doctors rely on it