The Priesthood of the Patient

[jmj11]

About 15 years ago I attended an interesting lecture at the AAPA meeting in Las Vegas. I can’t remember the title of the lecture, but the PA who gave it had a great optimism that we (at that time) were on the threshold of a revolution in medicine. He compared it to the Protestant Reformation. The one issue, which he hung his optimism on, was—what he called—the “priesthood of the patient.” Like the Reformation, he foresaw a great empowerment of the individual to search out medical truth on their own and to become captains of their own medical-care ships. He cited the new (at the time) arising world-wide-web and other great resources as where that empowerment will come from.

 

BTW, my good Catholic friends have always told me that the “priesthood of the believer” (the Reformation version of this empowerment of the people) wasn’t necessarily a good thing. Maybe they were right.

 

Here is my point. Our office today has been very busy. All three providers are here. Most of us have been over-booked (due to bad weather and the holidays last week). I’ve counted about six major, ugly patient confrontations today, between myself and my patients or patients screaming at the front desk personnel. All six cases boil down to the same issue . . . the patient has “read on line” or “been told by friends” that they need x,y or z test or certain treatments (which we disagree with). The “empowered patients” become very nasty and angry if they don’t get the MRI or the exact treatment they wanted.

 

The thing that the PA in Vegas didn’t think about, is . . . maybe unlike theology (or again they could be the same) is that medicine is so complex that the patients can't have a clue what the right thing to do, or totally miss their self-diagnoses.

 

Of course it is a good thing when patients participate in their care. Stop smoking, eat right, get good exercise, keep their appointments, take their medications . . . but I really think that this so-called empowerment, over all, does more harm than good. As someone else has said (in previous posts) that you wouldn’t board a 747 and demand that the pilot flies the plane a certain way (say flaps up) because you’ve read on line that it flies better with the flaps up etc. It would be ludicrous.

[MCHAD]

Very well said. So what do you do in a situation like you described above? I am a PA Student in rotations right now, and I am already encountering this...The TV ad said to ask about this, My friend said i have to get this done etc...

[jmj11]

Very well said. So what do you do in a situation like you described above? I am a PA Student in rotations right now, and I am already encountering this...The TV ad said to ask about this, My friend said i have to get this done etc...

I think you pick your battles. Cut your losses and hold your ground at the right time.

 

Since I posted that, I just got off the phone with an insurance company. A woman's husband had been giving our front desk hell for weeks, demanding a neck MRI for his wife (because the chiropractor convinced them that she needed one). I made it clear that the numb feeling marching up her arm and then on her face HAD NOTHING TO DO WITH HER NECK!. The husband and patient were always nice to me in the office, but constantly called wanting an MRI.

 

So I just talked to the MD reviewer for the insurance company (after I ordered her $()#* MRI to shut them up). He says, "I don't see a clinical indication for this cervical MRI."

 

I responded, "Nor do it. I it simple migraine aura." Then I explained how they have been calling almost every day for weeks. Then he, to my surprise, said, "Well, we will pay for it to get them off your back."

 

So, the problem solved . . . sort of. But, cervical MRIs aren't cheap. This behavior drives up the cost of healthcare and continues to empower patients when they should not be so empowered.

[LIPPER]

Ok I hear what you are saying......But Wikipedia says..........

[ajnelson]

I've recently been on both sides of this. Being in the ER, I tend to order more tests than I probably need to on certain patients. We get a decent amount of patients from urgent cares, sent to the ER to rule out a DVT (when the patient has obvious cellulitis) or to rule out a PE in and asthmatic with wheezing, rhonchi, infiltrate on CXR and for some reason they decided to run a d-dimer in their urgent care, so the patient is sent for a CT angio to rule out PE. Both of these types of situations (and others) but the ERs in difficult situations, and in general, we end up doing the un-needed test, partially CYA, partially customer service (making the patient happy). Is it the right thing to do? I'm not really sure I have a great answer to this....

 

Being on the patient side of things, I ended up in the ED with a family member and her kiddo who was having neuro symptoms after hitting his head. We watched him for almost 6 hrs at home and just wasn't getting better, so went to the ED. ED doc tried telling me he had a normal neuro exam (it wasn't....) and didn't need CT. I pretty much had to tell this provider I wasn't going to leave until it was done. Kiddo ended up with small hemorrhage around an unknown cavernous malformation. Nothing done but observation, but this doc wanted to send him home (not acting correctly) with a mom that knows nothing about the medical field. Had I not been there, nothing would have been done.

 

I guess, the point of this long post is having some knowledge is a good thing, and I like when patients are knowledgable, but I also think it is important for them to listen to us and why we don't thing certain things are or aren't the problem. Now when we (as providers in a specialty) don't agree with another provider, I think this makes a much more sticky situation.

[jmj11]

I think your "second guessing" is more of the exception because you are educated in medicine and know what you are talking about.

 

Another good example was a gal I saw last week. She is not even in health care (elementary school teacher I believe). She had a fairly recent onset of a rt horner's syndrome and ipsilateral head pain. She probably has hemicrania continua. However, I did order an MRI and even a carotid MRA. As I went over her normal tests she, in a polite way, asked. "Do you think I need a chest CT?"

 

To my amazement I asked her, "How in the world did you know that I was considering that? Did I mention it last week?"

 

She answered, "No . . . I've just been doing some reading on Horner's syndrome."

 

But she wasn't demanding but fully trusting my judgement. I did order a CT chest but I think the yield would be very low. She is about 32 and never been a smoker.

[EMEDPA]

"cyberchondria".

drives us all batty in the e.d.

[MCHAD]

"cyberchondria".

drives us all batty in the e.d.

 

haha LOVE IT! Hope you don't mind if i steal that one

[TerryBroadhurst]

I am sort of on the fence about this, due to the fact that several physicians refused certain tests that might have prevented the advanced nature of my condition had they listened to me.

 

What kind of tests were they asking for, out of curiosity?

[andersenpa]

Two sides tp this problem- a more informed patient makes better decisions, but we must ensure that they are appropriately informed.

This is an extrapolation of the common scenario in clinics each day- patients wanting antibiotics for viral illnesses. They read the sx, think they could have strep/etc, and of course want to cover all the bases for themselves.

 

Mike- re your pt and the neck MR- are you in the position of being in a "buyers market" and feel like you may have to cater to those whims of the patient even when you don't see a clinical indication? Will they go elsewhere? Is there enough of a reason to say they don't need the study and that you can't in good conscience order something unecessary? (excluding of course the possibility that they don't get the MR, and later are found to have a missed dx)......

[jmj11]

I am sort of on the fence about this, due to the fact that several physicians refused certain tests that might have prevented the advanced nature of my condition had they listened to me.

 

What kind of tests were they asking for, out of curiosity?

 

Others may have examples from their work. I work in headache. We know a lot about the pathophisology of headaches now. Most of my patients have chronic migraine. When I make the diagnoses I am quite confident in it. No testing is helpful in that condition (save the exotic research PETs, and functional MRIs but even those have been limited).

 

The patients though, have read on line that they have one of about 1,000 exotic conditions that have headache in their list of symptoms. Typically they want MRIs brain (there is a place for MRI but not with episodic headaches), MRI necks, "Allergy testing" Lyme titers, gluten sensitivity testing, and home inspections for "black mold." This sub group will not do any of the treatments which I recommended but they go from one holy grail to the next based on what their friends are telling them or they read on the Internet.

 

This same group often buys into the medical-industrial complex conspiracy theories. We western medicine practitioners are paid off by Pharma to make people sick so we, and pharma, can make more money by treating their worsening sickness. So we don't want to do tests because we might find the real (and simple) cause of their symptoms and ruin our gravy train.:;;D:

[Road Runner]

Yes, I agree, jmj11. Patients/families are becoming more demanding. (it has been said, "a little knowledge can be dangerous")

 

People come to the ER demanding a head CT for their child with normal neuro/no LOC/no vomiting/normal vitals.

Families wanting blood work for a viral URI.

Person demanding CT abdomen even though belly pain is 1/10, non-tender exam, vitals normal, afebrile, non-surgical abdomen.

The list continues.

 

I remind patients that I am not "withholding" a test from them (or antibiotics, etc, etc), but that it would not be helpful/useful/or indicated. I give them the risk/benefits. I then document that patient requested "xyz test", notify my doc, and often then get it! (grrrrr)

 

I don't know... I want my patients to be vocal about their requests, concerns, what they read on the internet (I document that too -- "pt states that on the internet it said ..."). I try and try to reassure.

 

I like your analogy about the airplane I want my pts to allow me make the best clinical judgement for their situation. But at the end of the day we went to PA school. They did not. ( I had a doctor remind me of that when I remember putting dermabond on cut that needed no laceration repair, but mom and child waited hours to see me over their cut.)

 

Anyway, jmj11, I feel your frustration and share in it.

[jmj11]

Yes, I agree, jmj11. Patients/families are becoming more demanding. (it has been said, "a little knowledge can be dangerous")

 

People come to the ER demanding a head CT for their child with normal neuro/no LOC/no vomiting/normal vitals.

Families wanting blood work for a viral URI.

Person demanding CT abdomen even though belly pain is 1/10, non-tender exam, vitals normal, afebrile, non-surgical abdomen.

The list continues.

 

I remind patients that I am not "withholding" a test from them (or antibiotics, etc, etc), but that it would not be helpful/useful/or indicated. I give them the risk/benefits. I then document that patient requested "xyz test", notify my doc, and often then get it! (grrrrr)

 

I don't know... I want my patients to be vocal about their requests, concerns, what they read on the internet (I document that too -- "pt states that on the internet it said ..."). I try and try to reassure.

 

I like your analogy about the airplane I want my pts to allow me make the best clinical judgement for their situation. But at the end of the day we went to PA school. They did not. ( I had a doctor remind me of that when I remember putting dermabond on cut that needed no laceration repair, but mom and child waited hours to see me over their cut.)

 

Anyway, jmj11, I feel your frustration and share in it.

 

Here is where the biggest problem comes in, as least in the outpatient sitting.

 

Step 1, the patient ask for a test that is not indicated. I do, as you've suggested, try to educate them on the reason I don't seen a need for it. They still demand it. I explain that I'm sure their HMO, or other insurance will not cover it for that indication.

 

Step 2, they still demand it, so I order it using as precise of dx as I can. It gets rejected.

 

Step 3, (this is what happened yesterday) the patient (or surrogate) shows up at our front desk mad as hell that we did not get the scan approved. They called the insurance rep who (to pass the buck) tells them, "Oh, we would be happy to pay for it, just have your doctor order it correctly." My MA explains to them that I have ordered it but it was rejected it. Then it starts this back and forth that the patient claims that I did not order it correctly. We explain until I'm blue in the face that I ordered it correctly, however, I'm not going to lie for them. I won't call a typical migraine a "Thunderclap headache" or report false neuro symptoms just to get it approved. That's when they get really angry. I suggest that I order it and they pay out of pocket for it.

[coloradopa]

In the ICU I'm a little more insulated. Every once and a while we get someone who just doesn't get it. We had a lady who was vented in a persistent vegetative state from a massive stroke (got a love NICU overflow). She was 20 days out and the sisters refused to discuss DNR because "we new someone like that who got better". They either didn't or refused to understand that the reason that she was on the vent was that there was nothing wrong with her lungs but her brain looked like swiss cheese. The kept asking if the "lung doctor" could see her. Hello, your critical care doctor (this week) is boarded certified in anesthesiology and critical care. Finally we gave in and called a pulmonology consult (which gave me a chance to use my evil laugh). The pulmonologist bluntly told them there was nothing wrong with her lungs and he could not understand why they were prolonging her suffering. This wasn't what they wanted to here so they wanted another "lung doctor" consult. After a prolonged round which included an ethics consult and a risk management consult we had the department chair see her. He even more bluntly told them that there was nothing wrong with her lungs. They wanted another consult and at that point we told them if they could find an accepting physician we would gladly transfer the patient to whatever hospital they could find. After an exhaustive day on the phone, and even getting one poor sucker to ask for a copy of the chart, it became obvious that all the other doctors were in on this conspiracy. Finally after another 20 days she drifted off to LTAC land.

 

The other thing you haven't mentioned is when a family member is a physician. Never mind that they haven't seen this area of medicine since internship. That won't stop them from "helping".

[jmj11]

Oh, yes. That is the worse case. Brother, uncle etc. the physician who is in radiology or some other area is an expert in your area based on what they taught in the 1970s.

[chatcat]

Unfortunately lay people place great value on anecdotal medical stories. Inevitably, another friend/family member/acquaintance will tell them about a similar illness they had which then automatically makes their illness identical to the others. And of course people love to share what I call "the worse case scenario stories" which results in common illnesses taking on supernatural proportions.

 

People searching the internet will inevitably be exposed to information that has no scientific basis and in many instances is downright dangerous.

 

My most recent glimpse into the perils of internet medical education involved a 60 yr.old uncontrolled diabetic with COPD who refused both the influenza & pneumonia vaccinations. When I asked why he had decided not to take advantage of something that would protect him I was told that his "trusted" internet reading revealed the dangers of vaccinations included:scam by drug companies just trying to make money, government conspiracy to thin out the population, adult autism, H1N1 was fabricated and without evidence.

 

As hard as I tried to educate this patient ,the internet information just couldn't be dispelled....and of course I was part of the entire "conspiracy":wink: