NYU Center for Humanities Event Imagining Illness: Pulitzer Prize Winners on Truth and Fact in Narrative David Oshinsky and Paul Harding

March 29, 2016 at 1:30 pm

By J. Russell Teagarden
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On a recent winter's evening, Pulitzer Prize winners David Oshinsky and Paul Harding appeared together at the NYU Center for Humanities in an event cosponsored by the NYU Division of Medical Humanities and the Bellevue Literary Press. Erika Goldman, the publisher and editorial director of the Bellevue Literary Press, moderated the session. Jane Tylus, faculty director of the NYU Center for Humanities, provided opening and closing remarks. The evening also had support from the Pulitzer Prize Campfire Initiative.

David Oshinsky's book, Polio: An American History (Oxford University Press) won the 2006 Pulitzer Prize in History, as well as the Hoover Presidential Book Award in 2005. It became the basis for a 2009 PBS documentary on polio. In 2010, Paul Harding's book, Tinkers (Bellevue Literary Press) won the Pulitzer Prize in Fiction and a PEN/Robert W. Bingham Prize. Drawing from their respective genres in the humanities, the authors shed light on how chronic illnesses can affect individuals and their families, in the case of Harding's novel, and on how epidemics can affect populations and national responses in the case of Oshinsky's history of polio.

In her annotation of Oshinsky's book in the NYU Literature Art and Medicine Database, Dr. Janice Willms notes that the narrative was written in a way that readers were easily able to grasp how it was "real people fighting a battle that swept from certain success to likely failure and back again many times, often almost overnight." Dr. Tony Miksanek, in his annotation of Harding's book, focuses on how the "story presents some exquisite impressions of seizures along with the aura that precedes them," and how it "masterfully represents how we measure life."

Oshinsky

Both authors spoke of creating narratives that convey a truth, yet their sources for truth are antipodal in nature. As an historian and documentarian, Oshinsky goes to archives and other sources of objective facts and occurrences to build his narrative. He told the audience that in creating his narratives, "not only am I telling a story, but I am fitting into a larger mosaic of other stories." He read a section from his book about a particular polio victim, Fred Snite, that interweaves both the personal suffering and social responses his plight generated.

He had lost the ability to cough so his throat had to be regularly suctioned. He had to be fed in rhythm with the respirator which caused his chest to rise and fall every four seconds, 21,600 times a day. But that was only part of the story, the lesser part. What kept Snite in the public eye was his determination to lead "an otherwise normal life." He became a tournament-tough bridge player, reading the cards in a rearview mirror placed above his head. He traveled to race tracks and to college football games in a trailer equipped with a spare iron lung. "His arrival at Notre Dame Stadium was one of the events of the afternoon," a friend recalled, "Enter the visiting team, polite cheers, enter the home team, loud cheers, enter Frederick, pandemonium." (p. 63)

Oshinsky lamented that as an historian he can't take the liberties availed to novelists, but Harding noted, in referring to this passage, that he is actually "deploying the same tactic as a fiction writer." Harding was allowing that the historian must work from facts and documents, but like the fiction writer, must create compelling narratives if the goal is to reach the general public.

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As a novelist, Harding builds his narratives from what he calls "imaginative truth." He starts by "imagining my way into the lives of people…whose lives might otherwise pass by unremarked. The value of their lives would not be witness to." In Tinkers, he imagines his way into the life of a person with severe epilepsy and what it must be like to experience a seizure. He gives witness to the experience in the section he read (or "tone poem" as he called it):

The aura, the sparkle and tingle of an oncoming fit, was not the lightningait was the cooked air that the lightning pushed in front of itself. The actual seizure was when the bolt touched flesh, and in an instant so atomic, so nearly immaterial, nearly incorporeal, that there was almost no before and after, no cause A that led to effect B, but instead simply A, simply B, with no then in between, and Howard became pure, unconscious energy. It was like the opposite of death, or a bit of the same thing death was, but from a different direction: Instead of being emptied or extinguished to the point of unselfness, Howard was over-filled, overwhelmed to the same state. If death was to fall below some human boundary, so his seizures were to be rocketed beyond it. (pp. 47-48)

Harding said he assiduously avoided doing any research about epilepsy, and had only some family mythology and his own close call with electrocution to inform his writing. But, although the seizure experience he describes was mostly mined from his imagination, it covers basically the same scope as a traditional biomedical description of seizures that can be found in Harrison's Principles of Internal Medicine-minus the literary splendor:

Some patients describe vague premonitory symptoms in the hours leading up to the seizure…The initial phase of the seizure is usually tonic contraction of muscles throughout the body, accounting for a number of the classic features of the event. Tonic contraction of the muscles of expiration and the larynx at the onset will produce a loud moan or "ictal cry." Respirations are impaired, secretions pool in the oropharynx, and cyanosis develops. Contraction of the jaw muscles may cause biting of the tongue. A marked enhancement of sympathetic tone leads to increases in heart rate, blood pressure, and pupillary size. After 10-20 seconds, the tonic phase of the seizure typically evolves into the clonic phase, produced by the superimposition of periods of muscle relaxation on the tonic muscle contraction.


Thus, Oshinsky and Harding compose compelling narratives about illness experiences originating from different places and evolving from different forms. In her forward to Humanity in Healthcare: The Heart and Soul of Medicine, Iona Heath captures the essence of what the varied approaches Oshinsky and Harding use when she states, "skilled writers help us to see the world and our own place within it in a new light-a light that falls from a slightly different direction revealing subtly different detail." (p. iv)
These are just a few of the many insights the authors provided during the session.
A video of the entire program is available at: https://www.youtube.com/watch?v=w-l86fOAsLY&feature=youtu.be.

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Medical Photography Exposed- Part 2

September 18, 2015 at 1:24 pm

In Part 2 of her interview with Katie Grogan, Emily Milam discusses how photography is used in medicine today. For Part I, click here.

 
As a second component to your project, you surveyed dermatologists nationwide about their use and opinion of medical photography. What did you discover about current practices?

Current practices vary depending on the clinical setting and the specialty. I restricted my survey to dermatologists because it is a population that relies on regular use of medical photography. I also chose this group because I do clinical dermatology research, so I have greater access to that population. But plastic surgery and other subspecialties that are particularly visually-oriented also rely on medical photography. To be honest, most fields use medical photography or images in some capacity, whether it's CT scans, MRIs, endoscopic images during a colonoscopy, intraoperative images of a patient's abdomen - these are all forms of photography to some extent.

The goal of the study is to better characterize the use of medical photography, including issues of technology, image storage, consent, and patient privacy. Despite its ubiquitous use, little is known about how photography is employed in the clinical setting.

Is there any formal training for medical professionals to encourage universal responsible photography practices?

To my knowledge, there are very few formal training opportunities. There are courses at national meetings, and some residency programs teach basic photography skills. There are also a handful of review articles in academic journals and CME courses that guide readers on how to focus a camera and things to keep in mind while taking photographs. Some medical centers are fortunate enough to have a professional medical photographer on hand who can take that expertise and apply it to patients throughout the hospital instead of having to rely on physicians. Also, with the advent of telemedicine, there is a focus on training physicians to be skillful photographers so that the images are clear and accurate representations of the disease that they are trying to transmit. I think there is still room for improvement. Medical photography tutorials should be a required component of training for many specialties, especially within the visually-oriented fields such as dermatology and plastic surgery. Beyond teaching students how to use digital cameras and take images that are in focus and with adequate light, it is also important to teach them how to drape a patient properly, what should and should not be included in the image, to remember to remove identifying jewelry and to cover tattoos and avoid the face if it is not the subject of the photo. I think that this is a benefit to everyone because oftentimes you can't publish photos that don't meet those criteria anyway. Other important tips are to place a ruler next to the lesion of interest for scale or to take follow up images at similar distances and angles so that they are more comparable. You'd be surprised how few photographs fulfill these criteria, including images published in some of the best academic journals.

Today, when a medical photograph does feature a patient's face, are there steps taken to protect that person's identity?

That's changed in recent years. At the end of the 20th century - the 70s, 80s, 90s - it was very common to put a black bar over the patient's eyes after the picture had been taken, using a computer to pixelate the image, or some other post hoc editing changes. It was later determined to be kind of silly - you can still tell who's who in a photograph with the eyes covered. So the focus now is on gaining consent, making sure the patient is informed about how their photograph is being used, doing the necessary paperwork, and if the area of interest is the face, including the face - eyes and all. There is greater emphasis placed on making sure the patient is fully aware and on board with how their photos are being used.

Medical photography can really come to bear on patient-physician trust then, right? How do you think it shapes this relationship?

I think that the relationship between patient and physician can go either way. In the modern age of technology, in some sense, patients expect their photographs to be taken, especially if it's for a procedure where they're looking to have before and after differences, or tracking their disease over time. But in the end, to maintain trust, it's important for the physician to fully communicate what they intend to do with the photograph, why they need it, and where it's going to be stored. Otherwise patients may be skeptical or distrustful, and it might make them nervous to come back. There is actually a study by dermatologists at Bellevue and NYULMC clinics, where patients were surveyed on their perspective of medical photography. In that survey, a majority of patients agreed that photography enhanced their quality of care, and they were okay with it. And they were okay with their photograph being used for medical purposes, for their continuity of care, teaching and research purposes, but particularly when the photographs were not identifiable. The study also found that patients preferred the use of clinic-owned cameras above personal cameras or smartphones. They preferred physicians to take the photos and not nurses or medical students. While patients are open to medical photography, there are some things that we need to be mindful of to make it comfortable and to continue that trust and even empower that relationship.

What do you think patients should be aware of when they are asked to be photographed?

I think they should know what their images are being used for, whether that's education, publications, part of their historical medical chart, or medico-legal purposes. This communication should be part of the informed consent process prior to taking the photograph. But obviously in the rushed world of clinical medicine this doesn't always happen. I think if patients understood that their photographs are a benefit to their clinical care as well as a useful instructional tool to trainees and journal audiences, they would feel more comfortable with the process and perhaps even take pride in their involvement. In fact, I've written a few case reports as part of my medical research, and I've found that a couple of patients were very excited to be a part of a journal and to be helping in some way, even if it showed them with a strange rash.

And when a patient consents to have their photograph taken in a clinical context, what does that mean for ownership of the image? Whose property is it?

That's a good question. It is very hard to say because when a patient agrees to have their image published in a journal, it is very difficult to take it back down the road. So you can argue that a patient no longer has control of the image, especially on the Internet. Once it's on the Internet, it's very hard to extract.

As the third and final component of your project you examined creative portrait projects that feature individuals who have visible diseases aimed at reframing the way we see them. What is different about portrait photography and contemporary medical photography? Why do you think photography is such a powerful medium for raising our consciousness?

Creative portrait projects have provided patients the opportunity to be the subject of art and not just the subject of clinical attention in the medical gaze. It allows them to reclaim their appearance and feel special rather than peculiar. That can be very empowering. These projects are important not only because they empower the portrait subject but also because of their rippling effect in empowering others with similar disfiguring diseases who see the portraits and then can identify with the portrait subjects and say, "There are other people out there like me." It's also important for people who are not disfigured to see the diversity of appearances.

Outside of this project you enjoy photography and documenting your experiences through pictures. Does this inform the way that you see patients? Are you observing your surroundings through multiple lenses, from medical and artistic standpoints?

Absolutely. When I observe clinicians taking photographs of patients or when I'm tasked to do it myself in the medical office, I can't help but consider the principles of perspective and depth of field that I learned in college photography. I can't help but look at the subject and the surroundings as kind of artful in some way. But I also have to remember that medical photographs, when used in clinical medicine, are not intended to be artful. They are supposed to be accurate representations of disease that convey clinical truths. There are two different sides of the coin, and I'd like to think that my interest in photography helps medical photography. I'm able to bring images into clear focus and center the photograph and make sure they are standing appropriately and able to consider the aesthetic elements that are helpful for the clinical needs or the purpose of the photograph. But sometimes it's hard not to want to play around and do creative things.

I hear the distinction you're making, but I wonder if those two things can really be so separate - where a medical photograph is completely objective and doesn't involve the subjective elements of perspective and framing.

I totally agree and in the end you're photographing a human, so you're seeing a human - whether that's through an objective medical gaze or you're peering into what they might be going through because of the malady they have and the reason why they are being photographed. So I don't think they can be separated. I think they go hand-in-hand and are kind of a composite entity.

From this whole process, going through all the photos you studied, do you have a favorite image that really spoke to you and maybe captured the spirit of this project?

It's hard to pick one, but one of my favorites is a photo taken by the medical photographer at Bellevue that I mentioned, Oscar G. Mason. My Rudin fellowship mentor, Dr. Oshinsky, initially told me about the photograph and I think it perfectly encapsulates the purpose of my project, not to mention its historical link to NYU. This photo, nicknamed "The Bellevue Venus," shows a young woman with a debilitating case of elephantitis of the legs. It was published by George Henry Fox in his dermatology atlas, Photographic Illustrations of Skin Diseases in the 1880's. What is striking about this photo is the way the subject has a cloth draped over her head and is covering her exposed chest, perhaps out of modesty or shame, or to protect her privacy or anonymity, yet it is such a clear representation of disease at the same time. You can almost imagine the overlap of the physical and psychosocial distress in this one image.

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"Bellevue Venus," photograph by Oscar G. Mason, The Bellevue Photographic Department

The fellowship year is about to end, and I understand that you have a few manuscripts in the works. What are you working on, and what do you imagine to be the future of this project?

I did have a paper accepted for publication, and it should be coming out in JAMA Dermatology in the next few months. It's a historical survey of the first dermatology atlases, after photography was invented. In this era, many of the photos were hand painted by artists to give color to the otherwise black and white images. I also discuss Oscar G. Mason and George Henry Fox's dermatology atlas. I'm working on a few other pieces for publication, including one on the psychosocial implications of one's appearance and society's "beauty biases." I'm also working on a manuscript that discusses, in depth, the legal cases that have shaped medical photography and the current guidelines we have today concerning consent and image security. Finally, I've also compiled a list of portrait projects that exist, showcasing different visible ailments such as alopecia, vitiligo, and craniofacial conditions. I want to have that on a site where people can find them and look through the images and feel empowered.

I want to take photographs of patients at some point. It's been interesting how some of the issues I've researched have been a barrier in my ability to take photographs of patients, such as concerns about image and privacy and anonymity. I still hope to have the opportunity to photograph patients and give them the chance to be the subject of art.

And, finally, you're planning to go into one of the visually-oriented fields of dermatology, so how do you imagine both your interest in photography and the knowledge you've gained from this project will shape the way you integrate photography into your practice?

Well, for one, I definitely hope that photography is a large part of my practice, and that means taking photographs of patients to track their disease progression or to use in educational materials. But I'm going to be very aware of the patient's experience in that process and make sure that I am clear and forward in what the photographs are going to be used for and provide patients the opportunity to opt out. I also want to help create educational tools or teach my future colleagues how to take photographs correctly. I see that on the horizon. Once I'm a physician, I will have built relationships with my patients and may have an easier time taking photographs of them - both clinical and creative - and they won't just come to me for their medical illness.

Medical Photography Exposed - Part I

September 9, 2015 at 12:44 pm

An Interview with Emily Milam, MS4, NYU School of Medicine, Rudin Fellow 2014-15

By: Katie Grogan, DMH, Associate Director, Master Scholars Program in Humanistic Medicine, NYU School of Medicine

The Rudin Fellowship in Medical Ethics and Humanities supports medical trainees at NYU School of Medicine - including medical students, residents, and clinical fellows - pursuing year-long research projects in medical humanities and medical ethics under the mentorship of senior faculty. It was established in 2014 through a grant from the Louis and Rachel Rudin Foundation, Inc and is a core component of the Master Scholars Program in Humanistic Medicine.

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Emily receiving her fellowship certificate from Drs. David Oshinsky, her Rudin Mentor, and Lynn Buckvar-Keltz, Associate Dean for Student Affairs, at the Rudin Fellowship Project Showcase, July 7, 2015

How did you become interested in medical photography and why did you decide to develop this into a research project as part of the Rudin Fellowship?

My interest in medical photography stems from a longstanding appreciation of portrait photography, since the two overlap so much. I first took a portrait photography class in college. In medicine, much of our education relies on illustrations from photographs. So when we aren't learning from the patients themselves in clinical rotations, we're learning from textbooks and the Internet where we see photos of patients with these diseases. I've always wondered what the experience was like for the patient who is photographed. What were they feeling? What did they think would become of that photograph? Did they know it would be in textbooks for thousands of people to see years later? I imagine that the experience would be perhaps embarrassing for some but fulfilling for others. I wanted to explore the different emotions and scenarios in which portrait photographs were taken in medicine.

One component of the project was a historical survey of medical photography. I imagine that most people, whether they are in healthcare or not, know very little about the origins of medical photography. When and how did it become integrated in medical practice?

Photography in some form has been around for centuries, starting with principles of the camera obscura. But the birth of photography is often credited to Louis Daguerre, who developed the daguerreotype process - the first photographic image with permanence - in the 1830s. After that it's thought that the first application of photography to medicine was in the 1840s, when a physician named Alfred Donne published a cytology atlas of 86 daguerreotypes of micrographic images in his book Cours de Microscopie with the help of a photographer named Leon Foucault. The earliest medical portrait is an 1847 photograph depicting a woman with a sizeable goiter, taken by two Scottish photographers, David Octavius Hill and Robert Adamson. There are many other examples of medical portraiture in the years thereafter, including the earliest known dermatologic daguerreotype of a burn victim's distorted face and neck published by a surgeon in Philadelphia's Medical Examiner. There was also a psychiatrist, Dr. Hugh Welch Diamond, who gathered a collection of psychiatric portraits of asylum patients, which he used for diagnostic purposes and case reports, but he also showed them to the patients after their treatment had finished to say, "See: this is the state you were in prior to coming to me." Finally, I'll just mention, the first medical photography department in the United States was at Bellevue, under the guidance of photographer Oscar G. Mason. He encouraged physicians to use photographs to describe landmark cases, surgical cases, and medical cases. He also helped physicians compile photographs for atlases of disease, and those can be viewed to this day.

Portrait and medical photography seem so distinct from one another. One emphasizes the wholeness and personhood of the subject, while the other captures a specific body part or condition of interest. It's interesting that early medical photography employed portraiture so heavily. Was the implementation of medical photography in the 19th century about documenting the patient experiences or advancing scientific knowledge?

I think it was a blend of the two. The purpose was definitely to advance scientific knowledge and to show these diseases, and to be able to send these photographs to other physicians around the country or world so that they could learn from unique cases. That couldn't really be done until the photographic technology allowed for prints to be lighter, smaller, and easier to transport. But when you look at early photographs of the late 19th century, you see very staged poses, with the use of props and backdrops, and they look like formal portrait photographs. So, there was a time when the two really overlapped, as medical photography was gaining its foothold and becoming more of a scientific endeavor and less about artful portraiture.

I know you combed through some really fascinating archives. What types of images did you find? What surprised you most about what you saw?

I scoured many places, especially the Internet, because there are so many archival photographs available, but there is nothing like holding an old tattered photograph or a reflective daguerreotype - they almost look like mirrors, and they are really special to see. I was able to travel to the Morbid Anatomy Museum in Brooklyn and also the Mutter Museum in Philadelphia. I spent the day sorting through original medical photographs from the late 19th and early 20th centuries, particularly photographs of Civil War veterans who had an array of amputations and maladies related to their time in the war. What's so striking is how formal some of the photographs are. A lot of the subjects are dressed very elegantly - with their top hats, bowties, and ruffled shirts - and they're posing formally, taking a sort of pride in their image and perhaps even their malady, though I can only speculate. I was also surprised, on the other side, to see portraits that seemed to portray patients' embarrassment or modesty about their illness, whether communicated by a look you can see in their eyes or their decision to cover their faces. Again, I can only speculate why they were covered - maybe it was the photographer's choice or the physician's or the patient's, it's hard to know for sure.

In our modern medical landscape, patient autonomy is paramount. When we talk about medical photography, what immediately comes to mind for me are issues of consent and privacy. Were these concerns for early medical photographers? How did this change over time?

In the present day, patient privacy, image security, and image quality are definitely paramount. I think early medical photographers were also concerned with image quality, but they employed the techniques of traditional portrait photography to showcase the high quality of their medical photographs, with the props, clothing, and elaborate backdrops. But underlying class issues and race issues came into play as well. There are photos that show patients of different races with similar conditionsaa leg amputation, for example - but the black patient is naked and the white upper-class patient is elegantly dressed and wearing full attire. In general, I think patient privacy was less of a concern. You can even find photographs with patients holding up signs with their names and other identifying information.

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G. Porubsky, Co B. 46th NY volunteer, photograph by R.B. Bontecou, from Shooting Soldiers: Civil War Medical Photography, by Stanley Burns, MD, published by Burns Archive

Was there one landmark legal case that really altered the course of medical photography with regards to privacy?

It's hard to pinpoint one case that changed the medical photography landscape but one of the first landmark privacy cases that hinged on photography was Roberson v. Rochester Folding Box Company in 1902. Basically, in this case the Franklin Mills Flower Company had hired Rochester Folding Box to print 25,000 advertisement posters. On these posters was the face of a young girl named Abigail Roberson, a teenager whose portrait had been taken at a photography studio for personal use. She never consented to its public display. Unbeknownst to her, the photos were placed all around town, and she learned of them through friends and family who recognized her. She reported experiencing "great distress and suffering in both body and mind" and she had a nervous breakdown, essentially, because of the embarrassment. While the judge ruled in favor of Rochester Folding Box, her case led to really rampant discussion about privacy and whether or not you own your own image. Over time, a decision related to this case ruled that, in fact, you do own your own image and the rights to decide what can be done with it. There are so many other interesting cases. One is Claymann v. Bernstein in 1940, in which the court ruled that a physician could not use a photograph of a patient's facial development for the purpose of medical instruction without consent. So even if it was just to be shared between medical students and residents, if consent had not been acquired, then it was not allowed. In a 1961 case in Louisiana, McAndrews v. Roy, a patient sued for an invasion of privacy after a physician published an image ten years after the patient consented. The judge found it unreasonable to publish photos after so much time had elapsed. So the rules we know today stem from several legal cases over time.

The gold standard today is really written consent, right? In these cases, what was the method of consent?

For the case of the elapsed time, I think it was a written consent. But even today not all institutions do written consentathey'll do verbal and document in the chart, "consent gained verbally," and some people don't do consent at all. So, it's definitely a fine line still, despite all of these cases.

To be continued