Moral fiber

A hundred years ago, battlefield soldiers who exhibited neurological symptoms like insomnia, tremors and hypersensitivity to noise without showing visible wounds were often charged with cowardice. Eventually (and reluctantly) the term “shell shock” was coined to describe the injuries that caused disrupted lives decades after the end of the First World War.

As we progressed through a century’s worth of wars, we referred to the condition as battle fatigue and then Post-Traumatic Stress Disorder (PTSD). We’re still somewhat ambivalent about the diagnosis, and treatment is also a bit of a crapshoot, depending upon both enlightened clinicians and funding of resources.

(During World War II, the Royal Air Force actually distinguished “medical casualties” from those classified as Lacking Moral Fibre (LMF). It was a diagnosis intended to prevent shirkers of combat missions turning their experience to profit as private pilots.)

We’re much more adept at sending men and women off to fight than we are at caring for them after they return. If they return.

So I was very heartened by this report out of NPR this week about a medical researcher and combat veteran who answered the unspoken call for help from a comrade, switched specialties and hung on for a decade to hunt down the physiological factors that constitute what we now call Traumatic Brain Injuries (TBIs). We are in the midst of a bumper crop of TBIs, thanks to the use of improvised explosive devices (IEDs) in Iraq and Afghanistan, so Kit Parker and his team are meeting a critical need.

There are several parts to this story that are worth highlighting.

We’re a hundred years on from the Western Front, with incredible advances in both life-ending and life-saving technologies, and we’re still teetering at the edge of the Dark Ages in terms of how we characterize the human costs of warfare. As one of the on-the-ground investigative leaders put it, “If you don’t have blood coming out of your head, if you don’t have a penetrating injury, you’re fine, everything’s OK, have a nice day.”

I love the way that Parker, a Harvard biophysicist specializing in the cellular workings of the heart as a muscle, essentially sat still and listened to what was not being said when his National Guard comrade Chris Moroski called him. He heard what his friend didn’t have the words to ask for, and he took action to ensure that Moroski got proper diagnosis and care for his TBI.

Then he took extraordinary action to ensure that others with TBI would also get proper diagnoses and care. Because he changed his research focus from the heart to the brain to understand how blast waves produced by IEDs physically disrupt brain tissue and function. Until he started his inquiry, no one had investigated this.

There have been some exceptional people working on unravelling this mystery, and I love how they’ve been unremitting in their pursuit of nailing down the cause of these injuries, and laying out preventive and therapeutic measures to protect soldiers. Many of them are combat veterans, but they all have that scientific curiosity that drives them to pursue “ground truth”. I applaud their tenacity and devotion; may their funding never wither away.

I am not at all surprised by the fact that there’s no corresponding research into drug therapies because pharmaceutical companies can’t see profits in the prospect of repairing broken brains, so they don’t see any merit to investing in it—even though TBIs are sustained in a lot of non-combat situations like auto accidents. They haven’t found a way to rake in millions from Alzheimer’s; they’re not going to piss away bench scientists on TBI when they can tweak the formula of Viagra or Lipitor, file new patents and spend that money on advertising direct to the consumer.

(If anyone should be labeled as LMF, it’s Big Pharma.)

So Parker’s team continues to work on gathering the data that will eventually lead to something that might entice some drug company to produce a treatment. NPR’s going to continue reporting on this, and I’m looking forward to following the story. This is why we need basic and applied science, and this is why we need to know about it.

Primary portal

We now move from the “personal” aspect of my recent primary care experience with the practice associated with Virginia Hospital Center. Let’s look at the systems side.

Naturally, this practice has a patient portal. You’re meant to go there to find results of tests, keep track of your immunizations and so on. This is a whole Thing in contemporary healthcare—they tout it as putting the patient in charge, but what it effectively does is keep the patient out of the provider’s hair. It’s also a massive saving in labor costs. If you want information about your care, the first step is supposed to be to go to the portal and look it up instead of calling them.

That would be fine if the portal was easy to use, well organized and contained accurate and understandable information. The VHC portal does none of these things.

Not having heard anything from the nurse practitioner in the couple of weeks since my office visit, I went through the kludge of logging on to the portal (which is a white-labeled site run by an outfit that shows up as eClinicalWorks). Obviously what VHC chose was the least amount of customization possible, because the interface is as generic as they get.

The disdain for the user exhibited by this site is encapsulated in one design feature: you cannot use it to initiate contact anyone in the practice. Partly, I’m sure, because to have that capability the site would need to have an underlying database with contact details, which involves the expense of custom development, and partly because you’d also have to have providers who would be willing to be contacted. Either way, it would represent an investment in providing customer service, which would in turn eat into profits.

Note the message screen:

You cannot create and send a new message; you can only reply to one. (You can try to make an appointment, but that's an entirely different thing from communication.) It’s essentially push-respond. What does that say about the provider-patient relationship?

Back in the day, I bitched about the limitations of the portal run by Palo Alto Medical Foundation: you’d get an email whose sole purpose was to drive you to the site, so you had to log in and navigate to the message page to find out that they were confirming your appointment, or the like. PAMPF: I apologize. I had no notion how bad these portals could be; as they go, you are aces.

Because I could send questions and get responses from my providers throughout the system. It actually was a bi-directional communication system, not a freaking wall. I’d also receive notifications of lab test results (via the email-and-login route; but still…), which is better than hearing nothing but post-office visit crickets.

(Case in point: I used the portal three times in January and February to get interim prescriptions faxed to local and mail-order pharmacies, and to get a referral to physical therapy while I was still trying to find a PCP here. Each time, I originated a message online and my PAMPF PCP responded. It was like magic compared with this VHC nonsense.)

After receiving nothing in the nearly two weeks after my office visit, I soldiered through the kludge of logging into the portal and tried to understand the results of roughly $1100 worth of blood work. Want to know what I found?

Why yes indeed: a block of boilerplate covering liver-kidney-glucose-cholesterol-thyroid-vitamin D…and the X-ray results. All lumped together and pasted five times into the five individual tests. I wonder if they billed my insurer for that?

Okay—I believe that three days is enough of a rant. But if you’re in the NoVa-DC area, I’m still looking for a primary care provider.

Primarily not care

I promised you yesterday that I’d write about the second part of my Healthcare Hell Monday, so here it is.

It turns out that it’s right challenging to find a primary care provider (PCP) in the Metro DC area. Leaving aside the issue of finding a practice that accepts the flavor of CareFirst insurance that I have, I spent a solid two weeks a couple of months ago calling PCPs only to find that either they’re not accepting new patients or the first appointment I could get was months (as in more than eight weeks) out.

So I broadened my search and eventually found a nurse practitioner at a sizeable primary care practice affiliated with Virginia Hospital Center who could see me within a couple of weeks. The practice isn't on the same scale as my provider back in the Valley They Call Silicon, but I reckoned that as an interim measure (I needed new prescriptions for maintenance medications), I could tolerate this.

(And before you get up on your hind legs, I’m perfectly fine with nurse practitioners for primary care. They can be better diagnosticians and more attentive than actual MDs. As with any profession, it all depends on the individual.)

She wouldn’t prescribe without a full examination, which was okay with me. But when I discovered what passes as an exam in her eyes, I wondered what the point was.

Except, of course, for the revenue.

This is the first time in my life that an annual physical did not involve what you might call an actual physical examination. My clothes stayed on for the entire time I was with her. I had two issues I brought up—joint pain and skin anomalies (I have red hair and fair skin; any anomaly makes me nervous). She looked at neither. By which I mean, she stayed sat on the other side of the examination room and blinked at me while I described them.

She did order an X-ray to see if there might be a fracture, but she didn’t even take a look at the area when she did the absolute minimum: listening to my breathing and peering into my eyes and ears. Oh, and she tested my reflexes. And ordered blood panels.

This was also the first time since I was about 20 that an annual exam didn’t involve the physician doing a breast exam.

Well—I did get my prescriptions (and told you my sad tale about that yesterday). So I had accomplished my purpose. But as I was checking out, the admin staff handed me a document grandly called “Summary of Today’s Visit”. I’m glad that they didn’t take my blood pressure after I sat down at home and read that, because it was quite the work of fiction.

Here’s a clip from it:

Here’s my own summary: 

There was no discussion of ideal body weight, BMI or blah-blah-blah. I told her that I know I’m overweight and she nodded in what I assume is meant to be knowing sympathy. There was not a whisper of Weight Watchers or the ilk.

Sleep counseling? Dental health? Injury prevention? Safety?? (Bike helmet??? What the hell?) Guns? Seat belt? Alcohol? Not a peep. Seriously—not word one from her on any of those subjects. She didn’t even ask me about my drinking habits—first time in probably a decade that that question hasn’t been part of taking a patient history. (Yes, I filled out a questionnaire beforehand. But if she actually read it, she didn’t ask me anything about it and she certainly didn’t “counsel” me on anything.)

I told her I don’t smoke—on the health history questionnaire; there was no mention of it in person.

I brought up my concern about skin; I informed her that I never go out without sunscreen on; I told her that I stopped using the sunroof of my car six years ago. She never said a word, and she didn’t bother to look at my skin for damage even after I told her I had some areas of concern.

She said nothing about breast examination (and did nothing about it) beyond ordering a mammogram—preferably at the radiology department of VHC, which is a revenue source for the overall organization. When I asked if I could get it from another provider (one more convenient to my work), she got a sour look on her face, but said yes.

She did ask if I’ve had a screening for osteoporosis, ready to order that, as well. When I reported that I did within the past year and apparently have the bones of a 27-year-old (which appears to be the benchmark), she lost interest. That crap about dietary requirements for calcium and vitamin D—no. Never happened.

(I did report that I regularly take both vitamin D and Omega-3 supplements. She neither inquired about nor recommended dosage amounts.)

Obviously this “summary” was all boilerplate that she cut and pasted into the document. You can see that she didn’t even bother to do a good job of pasting; she just slapped it in willy-nilly.

I’m assuming that this crap was for the dual purpose of laying groundwork for showing comprehensive attention to care in the event of legal action, plus sending to the insurance company for payment. But for the first time in my life, I’m contemplating calling a health insurer and ratting out a provider. This kind of assembly-line whole-cloth fabrication doesn’t deserve to be compensated. If you’re too busy running patients through your practice to actually have in-depth conversations with them, okay. But don’t make up shit and attach it to your invoice as a statement of work performed.

And don’t assume that I can’t read. Especially since you expect me to engage with you exclusively through your website.

And I’ll write about that little joy tomorrow.

Not a high mark of care

What was your Monday like yesterday? Mine was spent trying not to go postal dealing with the US (well, Metro DC) health system.

First of all, I had my third conversation in a week with CVS Caremark over authorizing payment for a medication which carries a co-pay of more than $300.

My PCP faxed the prescription to Caremark on 26 May, and in response to one of their robocalls I authorized payment on the 31^st. Then I did it again on the 4^th and got a confirmation email.

But yesterday I got another robocall, in which the automated system makes you jump through a bunch of verification hoops before it intones, “There is a problem with your payment. We cannot process your prescription until you call us.” Because their time is so much more valuable than yours and they couldn’t possibly waste one of their humanoid’s time on calling you—or even connect you with one of their humanoids since you’ve already verified your credentials.

Leaving aside the issue that only about half the time does Caremark seem to recognize my member ID number (the one on my insurance card), so I have to run through extraordinary measures just to keep them on the line, for the third time I once again went through the rigmarole about authorizing the obscene amount of money they demand as a co-pay. (In fairness, it is three months’ worth of the meds.)

I pointed out to their agent Michelle that I was told a week ago that everything was set and asked when I could expect to have my medication actually, you know, ship. (As far as I know, they don’t have to go out and grow anything; they can get supplies from one of several rapacious pharmaceutical companies and add on their own extortionate markup.) She assured me that it’s now settled, and I’ll get a confirmation email. I needed to get to a meeting, so I didn’t point out that their confirmation emails don’t seem to be worth the pixels they’re written on.

Then I got home and had to deal with my primary care provider’s “patient portal”, which of course is their preferred method of keeping their customers at a distance.

But I’ve had enough tsuris for one day. I’ll write about that tomorrow.

Gratitude Monday: Base and precious metals

Last week NPR reported a story that really reached out to me. You may recall an earlier story of how staff at the Auschwitz museum discovered two pieces of jewelry hidden in the false bottom of an enamel mug. The original owner—one of hundreds of thousands to pass through the work-and-death camp—is unknown, so the narrative surrounding the mug, the ring and the necklace remains ephemeral and very sad.

But that report sparked a listener to contact NPR with a similar story from her own family history. You can read it here, but the condensed version is that when the German army began the invasion of Poland in 1939, a Jewish couple in Warsaw, Guta and Meyer Rak, took precautions against the presumed chaotic future. They took their gold jewelry to a goldsmith and asked him to melt it down and hide it in the lip of an ordinary tin tea canister.

When they picked it up some time later, of course there was no way of knowing whether the goldsmith had done what he’d been paid for, because the whole point was that the precious metal be completely hidden. He could well just have kept the gold as well as their payment, lined the tin with more base metal and handed that over; after all—even if they did discover deceit, what could they do about it? The Raks took the canister with them as they fled to the East, and it stayed with them through years in Soviet labor camps, and more years of travel until they settled in the Bronx.

They never attempted to retrieve the gold—they always managed with what was visible, without having to dip into their secret reserve—so they lived their long lives without knowing whether their reserve still existed. It took them decades before they even told their daughter what the rusty old tea canister represented.

But when their granddaughter was planning her wedding, she decided to use whatever metal the tin contained for her wedding rings. She found a jeweler who likes a challenge, and he made a special tool to pull out the lining around the lip that would cause minimal damage to the canister.

And he found gold.

The Warsaw goldsmith had not taken advantage of the dark times to cheat customers he would never see again. And he’d done a masterful job using lead to solder the gold securely to tin—apparently a tricky balance.

The Raks kept their battered old canister with them for 70 years, trusting that, whatever came along, they could always pull out something extra from the can if it was needed to get them to better times. But they managed without ever needing it.

And their granddaughter and her husband wear daily reminders of that story of honor, trust, hope and resilience.

I am grateful that this story has come to light to remind us that such precious metals are possible, even in the basest of times.