On Weight Stigma as a Population Health Harm

STAT News, which I quite like as a source for health journalism — other than their acceptance of funding from the pharmaceutical industry — ran a piece written by Laura Fraser.  The article covered what by now can only be understood as an extremely familiar narrative.  Namely, Ms. Fraser’s sister Jan died six months after being diagnosed with an aggressive form of endometrial cancer.  But a series of health care providers failed to diagnose accurately because they were unable to see past the patient’s fatness:

Jan might have had a better chance if her doctors had looked beyond her weight and their prejudices about fat middle-aged women; if she hadn’t been so reluctant to seek medical treatment because of the fat-shaming lectures she knew awaited her; and if she’d grown up thinking that her body was OK the way it was, and she should love it, move it, and take care of it.

This is a tragedy.  It is also all-too-common a story.  If you take the time to really listen to fat people, engage with fat activists, read blogs, zines, and narratives in the Fatosphere, stories similar to that noted by Ms. Fraser are legion.  Hence, I tweeted:

I think this is true.  Heck, I wrote a commentary on an issue of Narrative Inquiry in Bioethics that was devoted to the collection of stories like this (and others related to fat stigma).

However, I’d like to take a moment to further unpack the notion of stigma as a population health harm.  Most people, especially those connected to health care, can readily understand the idea that stigma erects barriers both to seeking treatment and to the shared decision-making that is integral to safe, effective, and humane health care.  (One of the bugaboos of the latter is known as “premature closure,” in which the provider determines, prematurely, that the patient’s problem is X and closes off further inquiry and discussion that might open up the field of potential diagnoses and interventions.  This is precisely the error that seems to so widely affect fat people seeking health care).

However, thinking about the harms of stigma solely as an impediment to health care is a big mistake, because it drastically understates the extent to which stigma harms health.

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CFP: Pain and its Paradoxes

MedHum | Daily Dose

BMJ Medical Humanities will host a special issue on PAIN in June 2018! We want you to be part of it!

Title: Pain and its Paradoxes
Abstract Deadline: August 1, 2017
Final Submission Deadline: October 1, 2017 (publication date June 2018)

Pain is almost certainly the most common illness experience on the planet.  Yet, it is frequently treated poorly, and those who experience pain often endure skepticism, doubt, and stigma for their condition.  In most places around the world, pain closely tracks social power structures, which means that marginalized groups are both more likely to experience pain, and are more likely to have it regarded dubiously and treated inadequately.

Moreover, while pain is a near-universal part of the human condition, it remains difficult to define and conceptualize.  As Emily Dickinson famously noted, pain has an element of blank.  And while pain and suffering are often experienced together, they remain distinct…

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Morton, X-Rays, & the Dead: On Ethics & Historical Memory

This post will read like a basic history of medicine post, but it actually presents an ethical question with which I am wrestling.  Thus, comments from the peanut gallery are especially desired.

In April of 1896, Henry D. Chapin, a pediatrician at the famed New York Post-Graduate Hospital, contacted his friend and colleague, William J. Morton.  morton

Morton was a prominent neurologist and electro-therapeutist in New York City, and he hailed from a prominent therapeutic family: his father, William T.G. Morton, was the co-discoverer of anesthesia in 1847.

Morton had been experimenting with galvanism and faradism for some time prior to the introduction of the X-ray, and by virtue of his work, he enjoyed a professional relationship with Thomas Edison, who, by 1896, had reached nearly the height of his fame.  We have evidence that Edison began experimenting with X-rays within hours of the news of Röentgen’s discovery being cabled across the Atlantic.  Telegrams establish that Edison invited Morton to some of the earliest X-ray experiments he conducted in his laboratory, in late December 1895 and early January 1896.Morton Edison January 2 1896 Lawyer Letter

Morton was very busy with X-rays during the “X-ray fever” of 1896, but in this post I want to focus on what Morton and Chapin were occupied with in April of that year.  On March 17, a six-week-old infant identified only as “William J” was admitted to the Babies Ward of the Post-Graduate Hospital.*  According to Chapin and Morton,

He presented a typical clinical picture of a condition very often seen in infants’ hospitals and dispensaries, due to bad food and air, and popularly known as marasmus or atrophy.  The mother was unmarried, without means, and had fed the baby since birth on canned, condensed milk.

In spite of careful nursing and feeding, the infant was unable to assimilate its nourishment properly, and died on April 9th. It occurred to me that this would be a good case to test the transmissibility of the Röntgen rays, and accordingly I requested Dr. William J. Morton to undertake the experiment.

There is, of course, much that could be said about these two passages alone.  The description of William’s mother is obviously moralized and gendered, with pejorative implications on her marital status, her socioeconomic position, and her choices on how to care for her baby given the constraints that she likely faced.  All of these issues are hugely important — likely more important than what I want to say here — and are fortunately well-plumbed by brilliant historians of women and reproductive health.

What I am interested in here is the fact that Morton managed to produce a X-ray image of William J.’s dead body.  Here is how Morton described the process:

The Crookes’s tube was placed at a distance of fourteen inches above the child and in a vertical line above the epigastric region. The sensitive plate was inclosed within a cardboard box. Probably less than forty minutes actual time was consumed in affecting the plate. With the excitation of tubes now at command, fifteen minutes would suffice to produce the result shown. Since the bones of a child of this age are so freely penetrated and traversed by the X ray, the contrast between flesh and bones is not so marked as in the case of adults. In relation to showing the situation of organs, this is largely a matter of the time of exposure. An under-exposure shows the organs in silhouette, while with a longer exposure the rays soon penetrate the plate and obliterate the record. The picture here reproduced was timed to show the skeletal bones only, and therefore does not do full justice to the possibilities of location of other internal parts.

Although it is difficult to be certain, it is quite possible that the resulting image, published in the New York Medical Record of April 25, 1896, is the first successful X-ray of such a young infant (whether alive or dead).  The image itself is quite impressive, certainly by the standards of the time (X-rays often required long exposure times and were often unsuccessful in these early days).

I am writing about this as Chapter 7 in my monograph project on the history of the X-ray, tentatively entitled, “Truth, Objectivity, and Sight: An Intellectual History of the X-Ray in the U.S. 1896-1945.”  Here is my question:

Should I include the image in the book?

This is not a copyright question.  The image appears in a text written prior to 1911, and under US intellectual property law, is therefore in the public domain.  I am legally permitted to reproduce the image for any purpose that I see fit, as are you, dear reader.  This is an ethical question.  What do I owe William J.? What do I owe his mother?

William J lived a short life, but he lived a life.  His life has worth not simply because I and others like me can reproduce a X-ray image of his dead body.  His life is not fodder for my work.  How do I bear witness to his life? What are my obligations towards William J.?

I’ve blogged before on the ethics of memory, arguing that how we remember Mary Mallon, and how we speak of her, has significant ethical content.  I am unsure how this is any different with regard to William J.  The image is both evocative and historically significant in the annals of scientific imaging.  A scholarly book on the history of scientific imaging should obviously include many examples of such images, although that does not itself require I use this particular one.

Ultimately, I keep returning to the idea that the reasons for wanting to include the image of William J.’s dead body are mostly selfish.  While it would enrich the text and be useful for showing the reader the point I am trying to flesh out in the chapter, it’s use is really more about my hopes and aims for the chapter and the book.  I cannot say that doing so is really about centering William J. and of honoring his short life.

So, I am leaning against including the image.

I really welcome your guidance on this one.  Feel free to comment or email.  Thanks in advance.

*Henry D. Chapin & William J. Morton, “A Röntgen Picture of a Marasmic Infant,” New York Medical Record 63 (1896): 540-542.

 

On Priorities For Reducing Mental Health Stigma

I engaged an interesting exchange this AM on Twitter with my friend and colleague, Ben Miller, Director of the Farley Health Policy Center here at the University of Colorado Anschutz Medical Campus.

Initially, I retweeted a perspective suggesting that stigma was the largest known challenge to mental health care.  Ben responded:

Although I typically agree with Ben on most everything, here I disagreed, invoking the Unholy One himself (Bill Lumbergh):

Lumbergh-Im-gonna-have-to-sort-s2BK.gif

Ben clarified:

I agree with this, but it does not follow that payment reform is more promising than other kinds of anti-stigma interventions.  Rather than belabor it in text, I thought I’d try my hand at vlogging an explanation:

Thoughts?

On Teaching About Medical Ethics & the Holocaust

The Holocaust has always felt near to me.  This has been the case for me since childhood.  My grandfather, an Orthodox rabbi who left Lithuania for South Africa in 1932, satisfied every stereotype of the Eastern European Jew — the beard, the accent, everything.  In him I always saw what could have been.  Late in his life, he claimed to know what was coming, but I honestly doubt it.  I think it is more likely that, having finished his yeshiva training in the early 1930s, he managed to find a good job offer in Johannesburg, and he took it.

In any event, since childhood, I read widely, asked lots of questions, and learned as much as I could long before I ever thought about a career in bioethics.

None of my immediate family members died in the Holocaust.  Some more distant family members almost certainly did.  Nevertheless, it has always shaped my perspective not just on what it means to be a Jew in the world, but on man’s seemingly infinite capacity for atrocity and evil.

Many scholars have argued that, given the signal involvement of the health care professions (esp. doctors) in the apparatus of the Third Reich, Western bioethics in general arises from the ashes of the Holocaust.  Whether this is the case, I refer to the Third Reich often in my teaching, especially in connection with my interest in the Milgram experiments, cognitive biases, and our very human tendencies to groupthink and obedience to authority.

I think these topics hold troubling and disturbing implications for our most basic commitments and obligations to treat each other humanely.  Namely, a large amount of historical AND psychological evidence suggests that, given the right social cues (which do NOT involve compulsion or duress), the vast majority of us are capable of unspeakable cruelty.  Worse yet, striving to be a virtuous person does not seem much insulation against these capacities, for lots of people who seem in most walks of life to be decent human beings (i.e., good to their families) have committed atrocities (i.e., participated in genocide).

The evidence suggests that while most of us will in fact participate in cruelty and violence, a relatively small proportion of us will resist.  How we can ensure we will number among the resisters is something which I believe no one really knows — or at least, I do not — and we are forced to grapple with the conclusion that each of us is much more likely to number among the perpetrators of atrocity than the dissenters.

These matters sit heavily on me; they always have.

My Center and our invited guests have spent the last four days delivering panels, talks, and programming for our Holocaust Genocide Contemporary Bioethics Program (marking Holocaust & Genocide Awareness Week).  I spent some time preparing over the last few weeks; reviewing key texts, trying to shore up my understanding and awareness of key themes and pedagogies.

This week, we delivered a program that touched all four campuses of the University of Colorado: the Anschutz Medical Campus, Colorado Springs, Boulder, and Downtown Denver.  The details of these talks and panels are on our website, if you’re interested.

These issues are so crucial for health care professionals, IMO.  I am glad and honored to have participated.

But it was far more difficult than I had ever expected.  I feel empty and hollowed out.  I am drained by my feelings of connection and proximity, by my heritage, by my feelings of the ever-present peril of being a Jew in the world, and by the weight and gravity of the matters discussed and shared this week.

Last night, I almost burst into tears when listening to our expert, Tessa Chelouche, talk about the Hunger Study run by the Jewish doctors in the Warsaw Ghetto, and the final words of the leading physician, Israel Milejkowski, who died in 1942.  Milejkowski, who was starving alongside his patients, orchestrated the meticulous documentation of the effects of starvation, and smuggled the results out to a Polish doctor.  I barely managed to choke back tears upon hearing some of his final words, from his written introduction to the study:

A last few words to honor you, the Jewish doctors.  What can I tell you, my beloved colleagues and companions in misery.  You are a part of all of us.  Slavery, hunger, deportation, those death figures in our ghetto were also part of your legacy.  And you by your work could give the henchmen the answer, ‘Non omnis moriar,’ ‘I shall not wholly die.’

Basically: I’ve had a run-in with the Dementors this week.

So, here I sit, eating chocolate and listening to Beethoven’s Ninth Symphony.

To life.

On Priorities in Health Policy (as to Cost-Effectiveness Research)

This Health Affairs blog post is irritating, though not because it’s wrong. In the blog post, the authors acknowledge the following facts:

  • Health care services do not account for more than 15-20 percent of population health outcomes (Ed: AT MOST)
  • The vast majority of Americans believe that health is largely a function of access to health care services
  • The vast majority of cost-effectiveness research is done on health care interventions (i.e., in the clinical sector)

These points, and others like it, are the empirical jump-off points for my own work, which essentially pleads with scholars and policymakers alike to invest their attention and resources to the prime determinants of health and its distribution (the social and economic conditions in which people live, work, and play).

I suppose what irritates me most is that health policy experts in the US spend the vast majority of their time on HSR and health insurance.  These paradigms are important and worthy of attention.  But given the overwhelming evidence that HSR and access to health insurance are not the prime determinants of health and its distribution, this allocation of time, energy, and attention seems misdirected.  And I charge health policy experts with knowing this, which makes their overwhelming focus on health care and access to it all the more frustrating.  The authors of the blog post briefly address the causes of this focus:

Given the large spend in the health sector, health services researchers and economists understandably gravitate to clinical interventions to investigate where greater efficiency and effectiveness can be found. And because so much money is invested in medical care and the research that underpins it, such studies are comparatively easy to undertake. Meanwhile, the evidence base is much less straightforward when it comes to analyzing the cost-effectiveness of interventions that target more broadly health-beneficial policies, those that through tax policies promote and inhibit health-affecting behaviors, those directed at built and natural environments, education, and other strategies that directly or indirectly affect people’s health.

Priority-setting matters. And we spend far too much time talking and arguing over things and phenomena that IMO do not justify the moral priority we seem to grant them. Even the terms of our debates reflect this, as in the pharmaceuticalization of health (to where people on all sides of the debate frame health in terms of access to drugs).  The blog post reflects this — it is not simply the actual proportion of expenditures on health care vs. whole population interventions (which is hard to quantify but according to several measures, public health spending in the US is rarely more than 3% of overall health expenditures) — but even our attempts to analyze health and the welfare state fall prey to the Health Care Beast.  (The authors’ point is that we do most of our CEA on clinical interventions and health services, as opposed to whole population interventions targeted at root social determinants).

Although I generally agree with the blog post, I’d also note we do have some excellent CEA on some upstream interventions, such as the phenomenal work on The Abecedarian Project. The ROI is so good for the kind of intensive early childhood intervention evaluated here, Nobel laureate James Heckman has made such investment a cornerstore of The Heckman Equation.

Finally, the HA blog post leaves unaddressed what to my mind is the crucial question: does the evidence base we do possess as to the social determinants of health sufficient to justify public health action? Or need we wait until we have broader and perhaps more rigorous cost-effectiveness research as to root social determinants?

I think the evidence is more than sufficient to justify action, at least in some paradigms and as to some interventions, and a significant portion of my work is devoted to justifying this conclusion.

Thoughts?

On Stories, Rigor, and Public Health Policy

From the fascinating MAQ Blog curated by the fascinating and delightful Theresa MacPhail:
[a]  story-centered approach to examining health policy, however, is barely tolerated in mainstream policy circles. One recent example is a blog post on the Health Affairs website written by economists Katherine Baicker and Amy Finkelstein. Based on their own research into Medicaid expansion in Oregon, these authors argue that stories are little more than anecdotes that are incapable of providing the “evidence” necessary to develop and assess health policies. Instead they contend that more “rigorous” methods, and particularly randomized controlled trials (RTCs) are needed.
Interesting. I’ll say right off the bat I’m a friend and a fan of med anthro, qualitative work, and ethnography in general. I rely on it heavily for my work.
 
I’m also not here for the epistemic chauvinism evident in the notion that “stories are not rigorous,” which is abject nonsense if you know the first thing about ethnographic and qualitative methods (more specifically: stories in and of themselves may not constitute rigorous data, but neither is a random internet survey. Rather, systematic and careful methodology can render either collection and analysis of stories or insurance claims data rigorously produced, valid, and reliable).
 
I have firsthand practical experience of the power of narratives. I practiced pharmaceutical, hospital, and insurance litigation for 5 years in Texas, including mass tort pharma litigation. Causation in these cases is almost impossible to prove,  b/c the plaintiffs were often quite sick already, there’s a zillion confounders, and epidemiologic causation is brutally difficult to establish.
 
Plaintiffs should basically have never won, by the standards required under the law.  But they did, and when they did, it was because their stories were compelling.
 
When I teach about the use of stories in public health policymaking, we work from the notion that such stories are crucial, indispensable, and yet also dangerous. We ignore these stories at our peril — there is so much that is so important in them.
 
And yet, public health policy made on the basis of a few stories — note that in this context the stories would NOT make for valid and reliable data — can be disastrous, and there are many examples of this. The one I use are the horrifying patient dumping stories of the early 1980s, which led Congress to enact the unfunded mandate of EMTALA. There is good evidence that EMTALA has actually DECREASED access to emergency care for people in at least some rural and resource-poor settings. The use of stories in the congressional testimony prompted Congress to run off and apply a fix that was in too many cases actually worse than the status quo.
 
This is not a basis for rejecting the use of stories in public health policy, of course. As I said, they are indispensable to sound, humane public health policymaking.  But basing public health policies only on stories that are not collected and analyzed in rigorous ways in indeed dangerous for sound, humane public health policy.
Here‘s a nice defense of the use of stories in both clinical practice and in health policy, in JAMA, no less.
Thoughts?
(For those interested in looking further into this issue, the work of political scientist Sylvia Tesh is quite fascinating).

On Stigma, Race & Pain

Earlier today, The Atlantic published a Q&A with me regarding my recent publication on history, pain, and stigma.

The Q&A is the subject of a fascinating, wide-ranging conversation I had with the journalist, Sarah Zhang.  At one point, we have the following exchange:

Those attitudes, practices, and beliefs are handed down, and of course, they’re also racialized. One of the things we know is that persons of color, especially black people in the U.S., are much less likely to receive opioids than white people. As it turns out, it might actually be good for them.

Zhang: Right—and that’s one of the reasons why the opioid epidemic has been centered around white communities.

Goldberg: Yes, people of color might be missing some of the opioid epidemic than comparably situated white people, that’s a public health gain, but they’re also experiencing pain stigma, and that’s a public health loss.

On Twitter, several readers of this exchange were concerned that this might seem to indicate a belief that racial discrimination in access to health care resources is acceptable if it results in salutary health consequences.

This is not what I meant, but when it comes to racism, what the speaker means is far less relevant than what the speaker says.  Language matters.

Here is what I should have said:

Racial discrimination in access to health care resources is immoral.  Period.

There is an active debate, of which I am part, regarding whether stigma can ever be justified if it produces good public health ends.  I do not think it can be so justified, but others disagree.

Regardless, that debate is inapplicable here because, when opioids were being liberally prescribed, they were widely believed to produce more benefit than harm.  They were perceived as a health good.  Therefore, access to such an intervention was widely deemed to be just and right, and racial inequalities in such access were not justifiable when they were occurring.  Denying people what was widely believed to be a salubrious intervention along racial lines cannot be justified retrospectively because it resulted in some unintended health good.

Thoughts?

On Stigma, Public Health, and Narrative Ethics

One of the books I love teaching above all else is Judith Walzer Leavitt’s fabulous Typhoid Mary: Captive to the Public’s Health.  This is a spectacular book, and my students regularly confirm this perspective.  It is one of those rare texts that manages to satisfy the scholarly standards expected by professional historians of medicine and public health at the same time that it is readable and accessible for non-expert audiences (undergraduates, public health students, etc.)

My pedagogical affect is generally quite genial and affable.  I smile often in class, which is in part a function of the fact that I love teaching so much, and in part is because I try to practice compassion and accessibility with my students.  I begin most of my courses by sharing a significant amount about myself and my background, in part to build rapport and to try and diminish the educational distance that often exists in the hierarchies between student and teacher.

But because health stigma is a frequent topic of discussion and analysis in all of my teaching, we often find ourselves broaching the subject of Mary Mallon.

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