Building Theory

This weekend, I am at the RSA 2015 Summer Institute attending a workshop on Theory Building in the Rhetoric of Health and Medicine. I'm excited; I've not attended an RSA workshop before, the leaders and other members of the workshop are doing work that's interesting and exciting, and I really enjoyed the reading materials.

I had forgotten how fun that experience is--to get a reading list from a group of experts, read it, think about it, and then get together with other engaged people to discuss it. I haven't really gotten to do that since coursework, which ended four years ago at this point (yikes). Of course I read a ton of things all of the time and take notes and am motivated to read more by recommendations I hear, but it's not the same as working in a group with some really smart folks leading the charge.

According to the pre-workshop documentation, we're focusing this week on theory building with Ebola as a common example, which I found to be a fascinating choice. I was obsessed with Ebola in the fall but, with the rest of America, quickly forgot about it once the initial fervor had passed (in my defense, I became obsessed with measles instead, as the Disneyland outbreak picked up steam, but that's no real excuse for ceasing to care about real people infected with a real deadly disease). I was thinking about that viral amnesia today when re-reading Paula Treichler's How to Have Theory in an Epidemic, another reading assigned for the workshop. Treichler includes a lengthy quotation from Stuart Hall in the prologue, some of which states,

"AIDS is indeed a more complex and displaced question than just people dying out there. The question of AIDS is an extremely important terrain of struggle and contestation. In addition to the people we know who are dying, or have died, or will, there are the many people dying who are never spoken of" (3-4).

I believe these observations point to the importance of the work that medical rhetoricians, medical humanists, and cultural theorists undertake. Right as Hall is about the invisibility of many of the early AIDS victims--and AIDS as a disease, no less--it strikes me that many diseases have their own forms of invisibility, of silenced and muted voices, of blind spots and amnesias that blot out victims from view. Sometimes those victims of disease go unnoticed for years, sometimes they come into focus and benefit from attention, sometimes they come into focus only briefly and then flit away. No one knows (or cares) where they went or what happened to them. Sometimes they come into focus only to be heavily stigmatized, and benefits to the victims are few (maybe this is the case with Ebola?). Visibility isn't always a good thing; invisibility isn't either. Both may be inevitable.

Who, why, when, and how visibilities are created and negotiated in public spaces is the task of the medical humanities and medical rhetoricians and those who study and understand culture and communication. Disease, though it has undeniable objective components and consequences, is only partially those things. It's also a social phenomenon that needs to be understood if the disease is ever really grappled with. This is what makes me excited about my job, my research, and this workshop. Looking forward to an illuminating weekend.

Return to Blogging; Interesting Mea Culpa

It has been over a year since I have posted to this blog. I intended to get back to it this winter, but all of my posts wound up being either too short to be useful or too long to interest blog readers. It's an interesting writing challenge to be brief and responsive while also being comprehensive and still, altogether, not taking up too much time.

However, I realized as I was sharing this difficulty with a good friend who writes and develops the amazing fashion blog, Pumps and Polka Dots the other day, and I realized that this might be precisely why I should be blogging more often--to give myself the writing challenge that I clearly need. Plus her system for keeping blogging regular sounded like a great plan. So, I'm going to make an effort to post more frequently in the coming weeks.

Today, I just have a few brief comments on this article published yesterday by Tara Haelle, "How A Claim That A Childhood Vaccine Prevents Leukemia Went Too Far" in response to an earlier article she had written, which connected Hib vaccine to decreased risk for acute lymphoblastic leukemia. In her response article, Haelle outlines an extensive process she went through as a reporter to verify a claim she came across in a press release that, "the cancer protection offered by the Hib vaccine has been well established in epidemiological studies." Haelle describes seeking out numerous sources to verify this claim without being able to firmly determine that Hib vaccine can prevent leukemia. However, several news organizations picked up the story, and the connection between Hib vaccine and leukemia prevention became widely reported. But, the connection simply isn't true, as Haelle herself reports:

"In short, this study's press release greatly oversold the findings, and in my first interview with him, Müschen didn't discourage this conclusion. Was the research interesting? Yes. Does it add to our understanding about how leukemia begins? Yes. Can other researchers build on what Müschen and his colleagues demonstrated? Yes. Does it show that the Hib vaccine helps prevent cancer? Absolutely not."

She goes on to state that vaccine refusal may be a contributing factor to why people were so eager to find and report additional benefits for vaccines. In a time where the benefits of vaccines are being questioned by some, there is a rhetorical rush to find more benefits and more reasons to vaccinate. I'd add to Haelle's conclusion that sensationalist reporting and pro-vaccine support has contributed to this frenzy as well; yes, it's a reaction to vaccine refusers' claims, but it is imbued with its own forms of exaggeration and damaging claims as well. Charges that vaccine refusal is a case of medical neglect or that parents who obtain exemptions should be charged with child endangerment only add fuel to the fire about vaccines and are ineffective as persuasive techniques.

Yet, these are the very claims that made their way into numerous articles covering the Disneyland measles outbreak this winter. Even small things, like rounding up disease cases, linking to articles that do not support the claims that authors make, and bombastic titles designed to get clicks rather than inform can help to perpetuate an environment of misunderstood science through exaggerated benefits. More re-examinations like Haelle's would do well to dispel these issues, though more prudence in what does and doesn't get reported in the first place would likely be a more effective technique for de-escalating vaccine debates.

Walk-in Health Care: Growing Popularity (and Concerns)

From The Washington Post, April 6, 2014

Not a lot of time for a long blog post today, but I came across this article in this morning's Post and have been thinking about its implications for health care ever since.

The basic arguments in the article are as follows:

1. Between the growth of eligible patients (something that will continue to grow with expanded coverage facilitated by the Affordable Care Act) and the continued decline of doctors graduating from medical schools with specialities in primary care or family practice, gaining access to primary care has become increasingly difficult.

2. Consequently, retail chains, such as CVS's Minute Clinic, have expanded pharmacy offerings in their stores to include basic care for things like infections, vaccinations, and sports physicals. Some offer testing for basic preventative measures, like blood sugar testing, according to the article.

3. The services provided by these retail chains are more convenient, faster, and cheaper than other available options.

In a sense, the clinics solve a few problems. In an environment where people lack easy, quick access to medical services that physicians offices are too pressed to provide, the clinics can dispense antibiotics before infections (and discomfort) become severe, offer timely vaccinations (a critical need during flu season at the very least), and alleviate some of the burdens placed on the existing primary care system.

But, there are problems with this, too, some of which the article addresses but doesn't really offer a clear solution for:

1. The impact this might have on the care of children, in particular, is unknown and troubling. As the article quotes from an American Academy of Pediatrics (AAP) representative: "There is no such thing as a ‘minor illness’ when it comes to children. Pediatricians use these ‘minor illness’ visits to identify other, potentially more serious issues." What seems like a series of acute illnesses may be masking a chronic condition that goes unnoticed because there isn't a consistent physician caring for a child. Pediatricians and primary care doctors also watch for other issues children may be experiencing, such as nutrition issues, developmental problems, or even signs of abuse. All of these may be missed under such a disjointed system of care.

2. A lot hinges on preventative care, from our own long-term health to many health policies (not least of which, the Affordable Care Act). Increasingly, disease is not conceptualized as a single, isolated incident, but as a stress point that occurs at the end of a steady progression of illness, which has been exacerbated by individual circumstances and lifestyle choices. Properly caring for the little things that happen to us over time may be more essential to our long-term health than we realize, and reliance on acute or emergency care may exacerbate the negative affects of short-term thinking.

The problem of the dwindling primary care provider is a really serious issue. It strikes me that, on one end of the spectrum, the issue is addressed by concierge medicine--a specialized, expensive system where access to a physician is restricted by how much one is willing to pay. In this case, a select few can get same-day appointments, a doctor's email address, and, if needed, a quick diagnosis and prescription to treat an ear infection or an in-hospital consultation and coordination of care after a heart attack.

On the other, we have the CVS Minute Clinic. Here, you may not have a doctor's email address (or even see an actual doctor), but the service performs the same functions, providing quick, convenient access to medical information within the time constraints of otherwise busy people. Here, access is almost universal, but it's not as complete or complex and lacks the relationship-building and health maintenance objectives of the concierge option. While this system may solve acute problems, again, we're addressing acute measures to the possible detriment of chronic conditions that go unnoticed.

All of this might not be a problem. But we at least need to acknowledge how it is at complete odds with our larger objectives of preventative medicine that shape expectations for medical care and outcomes today and ask what the impact will be if this is the system that is takes up residence where the doctor's office once stood.

The Rhetoric of Feline Oncology: Or, What Happens When Your Cat Never Had Cancer (But the Doctor Said He Did)

Milton during his follow-up oncology
appointment, 6 months after his
initial cancer diagnosis. 

The title kind of tells it all.

In 2008, after a long bout of excruciating gastrointestinal troubles, my cat Milton—then 8—was diagnosed with intestinal cancer. Specifically, carcinoma of the jejunum and colon.

The pathology report described “multiple intestinal masses that are mucinous in appearance.” The cells retrieved through a fine needle aspirate of the masses revealed a “severe degree of nuclear variation and variation in cell size.” All possible treatment options were either too invasive for him to endure (sick as he was at the time) or unlikely to impact the particular kind of cancer he had. They didn’t even try to book us a follow-up appointment—the letter simply concludes, “I do expect him to decline over the next 2-8 weeks.”

At the time, these words were terrifying, final, the source of hours of tears and lots of Googling for alternative interventions and treatments. In the years since, they have meant afternoons spent at various veterinarian offices investigating mysterious symptoms that may have indicated that the cancer had spread (always turning out to be absolutely nothing), countless ultra-sounds and further small biopsies of his intestines to see how the tumors were doing (fine, by all of our best estimates), so many elaborate diets and supplements that Milton oftentimes ate better than I did, and a lot of fear and anxiety and worry for all of us that any mis-step in his care might bring dire consequences.

But, this week, at an appointment with the very same oncology unit that gave Milton a 2-8 week death sentence 5 ½ years ago, I learned what those words really meant:

There’s actually very little accuracy associated with these tests, surgical biopsy being the gold standard for this type of diagnosis, so although the conclusion at the time was that he likely did have cancer, the fact that it hasn’t killed him yet indicates that he actually never had cancer at all.

What?

Wait, what?

This was my response. Very eloquent.

So, what is wrong with him, then? I asked, still knowing that my dear cat experiences, well, for the sake of protecting his privacy, I’ll say “frequent gastrointestinal distress.”

Hmm. Not sure, the doctor says. IBS? Combined with old age?

So, 5 ½ years of doctors, medicines, alternative treatments, expensive tests, and constant worry all because he has, basically, been an aging cat with an upset stomach?

This experience has been interesting for a wide range of reasons (and infuriating as well), and I’ve had a wide range of reactions to it. But, for right now, I’ll put on my rhetorician hat, and analyze the situation through that lens. Because, looking at this case through its discourse is incredibly revealing.

Looking back through the original pathology reports, you can actually see the spaces where the discourse makes itself available to both offer a devastating diagnosis and explain away a mistake at the same time. As terrifying as the words on the report were, they were still couched in contingencies that I was too saddened to see when I originally read them: “the radiologist suggests carcinoma,” “a carcinoma is suspected but cannot be proven with this cytology,” “surgical biopsy would be required to make a definitive diagnosis.” None of those contingencies ever mattered at the time, and I never revisited them. Once the word “carcinoma” entered my world, my focus was on identifying, addressing, and defeating that, not on questioning its presence.

Yet, the contingent words were the words the oncologist relied upon this week as she delivered the news.

When I said, “But, I thought you took cells out of tumors. I thought those cells were cancerous, and that meant he had cancer.” She said, “Well, all we can see are irregular cell patterns, and irregularity can exist along a spectrum of pathology, from healthy, to sickened, to fully diseased cells. So, we may have seen cells that were cancerous and were later resolved by the immune system or cells that just looked abnormal because of inflammation.”

 

Milton, sitting on papers (of course).
Also, if you look carefully, you can see his belly is
pink after being shaved for an ultrasound.

And, naturally, “this is why surgery is the gold standard for diagnosis,” because without a chunk of diseased tissue, there’s no way to know for certain that what’s really in his body is really cancer and what kind of cancer it is. So, the combination of the ultrasound showing a mass and the extracted cells are the least-invasive best guess. That’s all they really have—a best guess that you can hope isn’t as bad as it seems.

The problem is, of course, that a lot of decisions are made based on that best guess. Most gravely, I could have chosen to have him put to sleep. This wouldn’t have been an inhumane option, given a cat that was pretty sick and going to die at the time. It wasn’t an option that I considered, but it is something that some people absolutely would.

On the other side of things, I could have chosen one of the more invasive options they provided, and that subsequent doctors have recommended since, like chemotherapy and radiation. This is the only point at which the oncologist did express some acknowledgement of the consequences of this error: “Well, in retrospect, it’s really good that you didn’t move forward with any more aggressive treatments, like radiation or chemotherapy treatment for a cancer that wasn’t there.”

“Humph, you think?” was my knee-jerk retort.

Overall, the experience reified everything I’ve read and suspected and analyzed about communication and medicine over the past few years. That, in that examination room, objective truths are hard to find (try as we might to find and rely upon them), conversations are rarely the same for doctor and patient, and the documents produced and the words those pages simply are different for the person who types the words versus the person about whom they are typed.

A similar sentiment is reflected in one of my favorite quotations from Kathryn Montgomery:

“The lump is there. It is a sign, caught in medias res, a clue to a natural history that is unfolding. Science describes and explains it and determines what can be done about it. But the importance of that lump, the acts its discovery entails, and what those acts will mean are social and cultural matters.” How Doctors Think, page 15

There may be cancer—except when there’s not—but cancer isn’t the same thing for the doctor as it is for the patient. Cancer, for this veterinarian, was a series of pieces of paper, test results, and a subsequent medical history that seemed to disprove original observations made by another veterinarian years ago. Cancer, for Milton, had meant that he had lived an entirely different life for the past 5 years than he would have without that diagnosis.

To put it in Montgomery’s terms, the veterinarian offered a scientific ending to the story of the lump, in the form of a conclusion: the lump was never there, and that was a good thing. But, it’s not as simple as that. The lump was never just the lump for Milton and for me. It was a series of treatments that were doing very little or nothing to treat the (still to be determined) disease he actually had; side effects of those treatments that were endured in vain; and a lot of time, energy, and fear funneled into a disease that wasn’t there. The narrative of that experience works very differently with such a scientific twist—gotcha! He didn’t have cancer at all!—at the end.

I share all of this with a rhetorician’s lens and a certain level of seriousness because, well, I can. As much as we love our pets, feline cancer isn’t as important as human cancer—pathology can get a cat’s cancer wrong; oncology can afford the educated guess that turns out to be a mistake. Owners can set the boundaries and refuse treatment without being called—at least openly—negligent. All of it happens without consequence; the consequences for the owner or the vet if one makes the wrong interpretation or the wrong choice aren’t as dire as they are if this were to happen to a human. So, in many ways, the rhetoric of the science here is a bit more raw, closer to the surface, open about its reliance on its own discursiveness. Well, we never knew, for sure, that he had cancer, and we never really said so either.

Regardless, as I say, this is good news. The best news I have ever received in an oncologist’s office, that’s for sure. But that’s only part of the point. Every part of the end of this part of the story is fraught, shaped by discursive contingencies, marred by rhetorical mis-steps, and shaped by the fact that the facts were never as certain as I thought they were. A lesson I still don’t know what to do with but that I should probably figure out before I arrive at the next vet appointment.

Back-to-School means Back-to-Vaccine (Mandates)

http://www.philly.com/philly/blogs/phillylists/States-with-best
-worst-vaccination-coverage-for-kindergarten-students.html

This came across my Twitter feed today, originally posted at Philly.com, about vaccination rates for Kindergarteners. Rates are not uniform across States, which is not surprising, but which States have the highest and lowest rates are.

For example, Mississippi consistently ranks among the highest levels of vaccine preparedness, largely because they have few available exemptions; only medical exemptions, written by a licensed physician, are accepted. No philosophical exemptions, no personal belief exemptions, no religious exemptions. Consequently, Mississippi is at the top of each "Best" list for the rate of vaccine compliance--99.9% in all major categories (MMR, DTaP, Varicella).

This is, of course, of particular interest in the context of Mississippi's health as a State overall. It has high rates of obesity (according to this report, the highest obesity rate in the country, though just reading through some articles on obesity, I'm noticing that there isn't a lot of uniformity in where different outlets are getting their reports on this, which is interesting in and of itself) and hypertension, and its counties have some of the lowest life expectancies in the nation. And child health metrics are not great in Mississippi, especially when it comes to obesity. The Child Policy Research Center reports that 44% of children are obese in Mississippi, and 30% of low-income children ages 2-5 are obese. Although it's not everything, obesity during childhood can have drastic consequences on life-long health outcomes, meaning that many of these children who are obese are at significantly increased risk for issues down the line, such as diabetes, high blood pressure, and all of their related secondary conditions and general pitfalls. (I'd provide more sources and links there, but we already know this, right?) Mississippi is also tied with Louisiana for being the least healthy State in the country according to America's Health Ratings.

At the same time, relatively "healthy" States are ranking among the "Worst" list in the article. Colorado is a particularly curious example, ranking worst in MMR uptake (85.7%), second-worst in DTaP (82.9%), and worst again for Varicella (84.6%). Also consistently on the "Worst" list is Pennsylvania, which, although not quite as bad as Colorado, is a surprising addition to the list. The easiest reason for this is likely Pennsylvania's relatively lax vaccine exemption requirements--according to Pennsylvania code, "

Children need not be immunized if the parent, guardian or emancipated child objects in writing to the immunization on religious grounds or on the basis of a strong moral or ethical conviction similar to a religious belief." 

So, vaccines are relatively easy to get out of--just write a note saying you really, really don't think you should be vaccinated, and you don't have to be.

Yet at the same time, Pennsylvania is a healthier State. Its rates of childhood obesity, while not great, are much better than Mississippi's: roughly 30% of children are obese, and about 25% of low-income 2-5 year-olds are obese.

I was struggling with more comparative ways of measuring how Pennsylvania is healthier than Mississippi (something I felt I knew based on news but have been unsure about) and came across a comparison tool at America's Health Rankings. You can play with this too; just go to their website (http://www.americashealthrankings.org/), go to 2012 Overview, and use the menu on the right-hand side to compare one State to another.

Just a few snippets of data that demonstrate relative healthiness:

Mississippi has

• More cancer deaths
• More cardiovascular deaths
• More incidents of diabetes
• More incidents of infectious disease (AIDS, Tuberculosis, Hepatitis A and B [which are vaccine-preventable])
• Substantially more incidents of preventable hospitalizations

I could go on, but you get the point. 

We have an obvious conclusion here: fewer vaccine exemptions=more vaccinated kids, but not necessarily healthier kids. Nice work for a Monday morning, Heidi.

But, an more interesting question to ask based on that (rather obvious) observation is this: what are the differences between a State like Mississippi and a State like Pennsylvania that could produce such radically different preventative health environments--one relatively good and the other the worst in the nation? And how does the least healthy State in the country manage to have one of the most aggressive preventative healthcare policies when it comes to vaccination?

Pennsylvania is, by all accounts that I can reach through some pretty quick searching, a richer, healthier, more populous state. If, as vaccine advocates often argue, increased scientific literacy is all that is needed to convince people that vaccines are safe and effective at producing healthy children and adults, then why would a more educated, richer State allow more permissive vaccine regulations?

So: what's the deal? What is the history of Mississippi's vaccine requirements? It is one of only two States (West Virginia being the other) in the nation that doesn't allow for religious exemptions (in line with what Paul Offit has frequently recommended as the only solution to waning vaccine rates in certain areas). Why? Who fought for that? When? How? Did anyone object?

I'm working in broad strokes here, but what this facet of the issue says to me is that a deeper understanding of the vaccine mandates (or lack thereof) that manifest in different places and historical moments might be an important link to understanding how different controversies are sparked in different places, who the major players are in dictating the debate (if there even is one at all), and who, ultimately, wins. Because, clearly, Mississippi's vaccine policy is not a product of a fastidious attention to preventative health detail as a product of collective social and cultural concern. Otherwise, it would be healthier by other standards as well (one would hope).

Again, another round of questions to be investigated through a deep understanding of the local manifestations of controversy, rather than those that exist more globally.

Local Vaccination and Rhetoric: An Interview with Bernice Hausman

My dissertation director and director of the Vaccination Research Group (VRG) at Virginia Tech was interviewed recently on our study of H1N1 vaccination practices in Southwest Virginia. The interview also mentions our upcoming article in the Journal of the Medical Humanities, which discusses the implications for this study and our understanding of local publics and medical rhetoric. Brief shout-out to yours truly at 1:57!


http://virginiapublicradio.files.wordpress.com/2013/04/prerollvaccine.mp3

Vaccines in 2013

Happy almost-2013! In honor of the New Year, I thought I would share a couple of the news items I will be watching for in 2013.

First, as always, is flu. This year's flu season has supposedly been off to a very early start, but by my accounting of the total number of infections on the CDC's national influenza summary, through week 51, there have only been 15,106 infections this year. I know--there have also been 16 pediatric deaths, which is absolutely terrible, and if you are one of those 15,000-some who is infected, you're probably in significant discomfort at best and some pretty serious trouble at the worst. And I also know that the number of reported cases represents only a fraction of the number of actual infections. But, still, 15,000 infections doesn't sound like a lot, in a nation of 300 million--to me, anyway. Everyone is going to have a different reaction to that information.

Vaccination rates are about the same as they were last year. I'm sitting in a room of five adults right now, and none of us got our flu vaccine; two say they intend to, but it hasn't been convenient so far. So, I guess we're contributing to the problem. Next year, there will be two quadrivalent flu vaccines: MedImmune's Flumist Quadrivalent and the newly approved Fluarix, an intramuscular vaccine produced by GlaxoSmithKline. Both of these vaccines will protect against the two most common Influenza A-type and Influenza B-type viruses. The addition of a second Influenza B virus may result in fewer infections.

But, as the CDC's website reminded me today:

The seasonal flu vaccine does not protect against influenza C viruses. In addition, flu vaccines will NOT protect against infection and illness caused by other viruses that can also cause influenza-like symptoms. There are many other non flu viruses that can result in influenza-like illness (ILI) that spread during the flu season.

I mean, I knew that, but it doesn't exactly get me excited for a flu vaccine, since it just reminds me of all of the things that can still make me sick no matter what I do. Yippee.

Anyway, next year, I will be looking out to see how these quadrivalent vaccines are marketed, if the uptake rates are higher, if more adults in particular (like those sitting with me in the room right now...) are motivated to be vaccinated, and so on.

Second, I'm also going to continue to watch news of the pertussis outbreaks. I'll be watching to see how/if the epidemic continues, how rates of infection pan out (adults? children? infants? college students?), and how serious is this going to get. Mostly, I'm curious to see how the story gets told: is this going to continue to be evidence of the "evil" of vaccine skeptics, who demanded the (now less-effective) acellular vaccine despite relatively unsubstantiated evidence that the whole-cell DTP vaccine caused neurological side effects? And damaged herd immunity by refusing the TDaP vaccine? Or, will those who remain skeptical use this as evidence of long-term ineffectiveness of vaccinations as a practical public health solution? Both arguments are out there. I'll be interested who uses what argument and when.

Back to dissertating. Happy New Year. Get a flu shot. Or wash your hands a lot. Or both. Or just accept sickness as an inevitability of life. Welcome, 2013!