On Pathologizing & Stigmatizing Autism

Today, JAMA Pediatrics published a Letter entitled The Electronic Health Record: Acquired Physician Autism.

I teach health stigma in clinical settings constantly, and one of the most important learning objectives is understanding that stigma is structural.  We can perpetuate stigmatizing structures and dynamics even where we least intend it.

I think that this Letter demonstrates, yet again, how and why this is so, and I say more in a brief vlog here:

 

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On Health As a Social Problem

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Here is my latest vlog, this one on the catchphrase of the blog:

“Health is a social problem, not a technical one.  It will be resolved socially and politically, or not at all.”

Obviously, this is oversimplified, so I explain in a bit more detail what I mean here:

On Medical Nihilism

Here is a fascinating review by Jeremy Howick of philosopher Jacob Stegenga’s new book Medical Nihilism (OUP).  Howick is largely sympathetic to Stegenga’s argument:

All of Stegenga’s arguments come together in Part III, where he reviews numerous types of bias that make medical evidence ‘malleable’. Here he shows that manipulating evidence (often by introducing ‘hidden biases’ that can be difficult to detect, Part V) and a ‘hollow’ hunt for adverse events (Chapter 9), lead to overestimating treatment benefits and underestimating their harms. All this points to his nihilistic conclusion that we should have low confidence in treatment effects. Instead of opting for treatment, he suggests we opt for ‘la medicine douce’ (gentle medicine), which he defines as a ‘form of therapeutic conservatism’.

Super interesting. I was increasingly moving towards a similar view myself, at least in part b/c of the overwhelming social epidemiologic evidence demonstrating that population health is mostly determined by social and economic conditions. But these methodological problems are also quite serious and deserve significant attention. And the point that adverse events are unknown, downplayed, or ignored outright is almost certainly true, IMO.

Basically, my view is that you really don’t want health care unless you absolutely need it (tho in the latter case you really do want it!). The problem is epistemic — knowing which minority of cases fall in the latter set. The author’s point, to which I am sympathetic, is that the set is actually quite small.

Richard Smith, former editor of BMJ, seems to agree as well:

Most practising doctors are, I believe, instinctive medical nihilists even if they would never use that term: they know the limitations of magic bullets, are highly sceptical of claims for new drugs, and recognise the importance of the human as opposed to the technical. Some patients and politicians are also medical nihilists, but most are not. They are the group who would benefit the most from this important book but also, sadly, are perhaps the least likely to read it.

Thoughts?

 

On Social Justice & Health

Because I am a public health ethicist, most of my work in ethics, law & policy involves justice and health (public health ethicists are in general agreement that justice is “a” if not “the” central value implicated in public and population health). In the US at least, lots of public health stakeholders spend lots of time talking about “social justice.”

Yet, what do we mean when we say “social justice”?

I’m not convinced a lot of the discussion is really connected to robust concepts of social justice (which do exist!). More in this vlog:

On Historical Moral Judgment

Nature published an editorial recently arguing against the removal of the statue of J. Marion Sims located in Central Park, right across from The New York Academy of Medicine (which is not responsible for the statue’s erection or presence there).

Although the opinion is within the bounds of reasonable debate, the arguments for it are poor, IMO.  I am not going to dissect it here — the term has begun and blogging time has become even more scarce than it usually is.  But I did want to say something about this particular claim, which one often encounters:

Defenders of controversial historical figures argue that they should be judged by their achievements rather than by modern norms. Sims was far from the only doctor experimenting on slaves in 1849, despite the fact that the abolitionist movement was well under way in the United States. And his achievements saved the lives of black and white women alike.

Because I teach the history of J. Marion Sims (and am prepping a course on the legacy of the Holocaust for health professionals), I have had a lot of time to think and work with learners on this claim: viz., that we cannot judge bad actors of the past because they were behaving according to dominant social norms that diverge from ours.  And increasingly, I think the claim is wrong if not absurd.  I vlogged a bit on why I think this is the case:

Comments welcome!

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

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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):

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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.