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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The Vaccine Project

November 6, 2015 at 1:25 pm

An interview with Philip Cawkwell, MS4, NYU School of Medicine, Rudin Fellow 2014-15
By: Katie Grogan, DMH, Associate Director, Master Scholars Program in Humanistic Medicine
Assistance from Tamara Prevatt, Intern, Master Scholars Program in Humanistic 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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Philip receiving his fellowship certificate from Drs. David Oshinsky, his 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 vaccine refusal and why did you decide to pursue this as a project through the Rudin Fellowship?

Vaccine refusal is something I've been interested in for a long time. As a medical student, and someone with a lot of doctors in my family, it was just accepted that you go to the doctor and get your vaccinations. So, growing up in an age where it felt like there was this huge movement of people who weren't vaccinating their kids, was something that I didn't understand very well. The goal behind this project was to dig a little bit deeper and figure out why this was happening. Why weren't kids getting vaccinated? Where were places with better or worse vaccination rates, and why? I also wanted to figure out what pediatricians can do about it. How can they do a better job of talking to parents and talking to kids and improving vaccination rates overall?

Through your research you discovered that the unlikely state of Mississippi, which consistently ranks at the bottom for other health indicators, has the highest vaccine compliance rate in the country. What's going on in Mississippi?

This is pretty shocking to everyone. Here is a state that is one of the most obese, approximately 35 percent of the population smokes, there is no indoor ban on smoking, and it has the highest rate of infant mortality. Yet, if you look at kindergartners in this state, 99.7 percent have gotten the MMR vaccine series, compared to about 95 percent nationally. That's almost every single kid in the state, and it's remarkable. That was something that I chose to focus on for this project because when you have a 99 percent vaccination rate, you're doing something right. The question is, what did Mississippi do to achieve this?

In one way, they're very fortunate because they have a framework that's in place due to a lawsuit, Brown v. Stone, which was brought against the board of education in 1979. Brown sued the school board in Houston, Mississippi to get his six-year-old son into the elementary school by arguing that his religion precluded him from having his child vaccinated. This went all the way up to the state supreme court that eventually ruled, "No you don't, in fact, have the right to a religious exemption because for the good of the public and society as a whole, sometimes you lose a little personal liberty." In their ruling they went further and invoked the Fourteenth Amendment, which is about equal protection under the law. They said that if they allow a way out of this vaccine statute, then it has to apply equally to everyone. If they allow a religious exemption, then they're discriminating against those who don't have that same religious belief. If they allow a philosophical exemption, then they're discriminating against those that don't have that same philosophy. The way they worded this was very important because it not only shot down Brown's case, but it saw into the future and prevented other personal and religious belief cases in the state. It has stood the test of time. However, it's difficult for other states that don't have this historical legal framework working for them.

It was important for me to figure out what else Mississippi does to maintain this high vaccination rate, so I went there and talked to the health department. Only medical exemptions are permitted, and to get one, the parent has to go through the state health department - it is not enough for the pediatrician to sign off on it. The pediatrician writes a letter and the health department reviews it. You only get that exemption if you have a real medical reason for not getting the vaccine. Further, the health department has a state registry of every child enrolled in school with a list of the vaccines required and a check box of whether or not the child received them. This is what the state epidemiologist calls "unit level accountability." So Mississippi's situation is a combination of this nice legal background and having everything centralized within the state department of health. That's what makes them the leader. (Additional information about exemptions can be found at the end of the interview)

As part of your project, you consulted experts in infectious disease, pediatrics, and vaccine education to explore how the rest of the nation can establish and maintain vaccination programs like Mississippi. What did you learn?

I can start with Mississippi, where I talked to Dr. Thomas Dobbs III, who is the state epidemiologist there. He personally oversees the exemptions and told me a lot about the inner workings of the program. One key thing I learned was that it is a lot easier to maintain a program like this than it is to establish one.

I also talked to a lot of pediatricians. At NYU I talked to Dr. Catherine Manno who is the Chair of the Pediatrics Department. She was able to talk about what it was like going through training at a time when we didn't have some of the vaccines that we do now - things like Haemophilus influenza Type b were routinely killing or crippling children. She commented on how it's remarkable that you can be a pediatrician or someone in training now and never have seen some of those diseases.

I spoke with Dr. Paul Offit at the University of Pennsylvania who has published more than anyone on this topic. He's written a number of books trying to dispel the autism-vaccine link and has developed a vaccine himself. We talked a lot about how it's now becoming popular among parents to try and spread out the vaccine series. People are worried about getting too many vaccines. One thing he was telling me that I think is really important to remember is that there are more vaccines now than there were a few decades ago, but if you look at the actual amount of the vaccine that is in each shot, the amount of antigen you are exposing your child to is much smaller than it was even if you combine all of the vaccines. Because Dr. Offit has been doing this for decades, he was able to provide some perspective. I asked him if he felt optimistic even while seeing the anti-vaccination people in the news everyday. He said with this year's measles outbreak at Disneyland people are finally caring and starting to respond. It was a really positive message from him that things might actually be changing and, indeed, we see that they are.

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Philip presenting his research at the Rudin Fellowship Project Showcase, July 7, 2015.

As you mentioned, among younger generations, we don't see many of these diseases firsthand so it's easy to mistakenly believe they've been eradicated. Disneyland was a reminder that this not the case. How did the measles outbreak happen? What did vaccine refusal have to do with it, and were there changes to California's exemption policy as a result?

It started in December 2014, and by February the CDC counted about 110 cases of measles that they could say definitely came from Disneyland. The majority of those cases were children who were either unvaccinated or who had unknown vaccination statuses. I think it was part of the national news and the national conversation and was able to ignite some change in California. The state senators in California who took up this call both had experience with public health. Senator Pan is a pediatrician in California and Senator Allen is the son of a polio survivor, so they both knew how important this was from a personal standpoint. They saw what was happening to their state. California used to have both religious and philosophical exemptions and as of June of this year, they have neither. That was a big change. However, it's important that it's not just California. Vermont got rid of philosophical exemptions this year as well. There are also seventeen other states with some form of legislation concerning vaccine exemptions. In some cases it's to get rid of exemptions and some cases it's making it harder to obtain them. But so far it's just Vermont and California that have actually passed legislation.

Vaccination is an issue that really crystallizes the tension between personal freedom and what's good for society as a whole. Do physicians have a moral obligation to help us reconcile this conflict?

Yes, it's very tough to get people to think about the health of society as a concept rather than the health of their child. If you think about it, these parents are not bad people; they are trying to do what's best for their child. They just have a different view than most pediatricians about what that is. They are really missing the societal aspect to it. Vaccinations are important and necessary because some people can't be vaccinated. If one or two people don't get vaccinated the system won't fall apart because the herd can protect everyone. It's actually safer to be unvaccinated living in a group of people who are vaccinated than it is to be vaccinated living in a group of people who are unvaccinated. And the reason is that around five to ten percent of the time, you don't get full immunity from a vaccine. With parents, there can be this diffusion of responsibility where, "my child does not have to be vaccinated as long as everyone else's is." It's hard to convince someone that you need to be part of the 95 percent that is going to take on that responsibility. It's a really quick snowball when you see states like Colorado, which has the lowest childhood MMR vaccination rate - it's about 83 percent - that's when you start to see problems, when everyone starts to take an individualistic approach.

But you have to look at it from two standpoints - from the parent's and the pediatrician's. Talking to pediatricians like Dr. Manno and Dr. Klass at NYU and Dr. Spiesel at Yale, they all came up with the same scenario: You're a pediatrician and you have someone sitting in your waiting room who can't get vaccinated - maybe he's six months old and not ready for his one-year-old shots yet. Then you have another patient in your waiting room that is sick with a vaccine preventable disease. Because you've allowed that child in your waiting room you now have some liability as a doctor to protect that six-month-old. Now you've exposed him to measles or another potentially deadly illness because you allowed someone who wasn't vaccinated into your office. At the same time, if you say, "As a pediatrician I am only going to see kids who are vaccinated," then what happens to the other kids? Where do they get their care and who sees them? That's a problem too. Several of the pediatricians that I spoke to say they just want to avoid that issue. It's much easier to say, "If you aren't vaccinated, there are a lot of pediatricians around here that will see you so go see one of them." They know they have somewhere else to go, and morally they feel better about that situation than potentially exposing their own patients to someone who isn't vaccinated.

Now if you're a parent, it's a whole other issue. It's this idea that "I'm not going to let the government or the doctor or the establishment make a decision for me about the health of my child." Many talk about it in terms of being forced: "You're forcing my child to get a shot," which isn't technically true. At the same time, there is something that has to be said for herd immunity and protecting those that can't get vaccinated and protecting the health of children as a whole. But when you have all of these vaccines that have been tested so well with data showing their safety and efficacy and you have diseases like measles and polio that we can protect against, it's hard for me to see a way for a doctor to feel comfortable without advocating for all of their patients being fully vaccinated.

What can the medical community do to motivate people who are confused or misinformed about vaccines? Would doctors' offices saying "we will only see patients who are vaccine compliant" compel conscientious objectors to rethink their stance?

It's a really good question. There are two groups of people who won't vaccinate their kids - a group who can be convinced and a group who can't. The really staunch anti-vaccination people, they're settled. They've made up their minds, and there isn't a story you tell them or statistics you give them to change their stance. Then there's a group who aren't vaccinating because they're under-informed or they're a little uncertain. That's the group that is really important because they can be convinced. That's the danger of having a blanket policy that you won't see those kids unless they get vaccinated. Maybe the parents could have been convinced and you shoved them aside.

The other part of my project, besides looking at Mississippi, was looking at strategies for convincing parents to vaccinate their kids. Specifically, I looked at strategies that weren't based in statistics. Doctors love statistics - they speak the language of the p-value and talk about randomized controlled trials proving the efficacy and safety, and that doesn't mean a whole lot to most parents. I looked at narrative medicine and the power of storytelling and whether physicians can talk about stories of patients they've had that weren't vaccinated, or even a personal story about how their kids got vaccinated and how well that's worked out for them. But the problem is that this takes time. When 80% of well-child visits in this country are less than twenty minutes long, it's hard to take five minutes to talk about why vaccines are safe. It's a lot easier to say, "You have to get vaccinated. Vaccines are safe. Here's an information sheet." That's a really complex problem where there's not a great solution at this point.

In addition to considering a narrative approach, you also looked to print media, especially political cartoons, to analyze the anatomy of the vaccine wars. Is there one particular image that you came across that captures the essence of this contentious topic?

There's a cartoon is of a blindfolded man labeled "anti-vaccinationist" walking off a cliff labeled "misinformation" into a big lake of smallpox. My favorite part about it is that it's not a current cartoon but from 1930. So it's this reminder that this isn't new; it's maybe new in the pubic consciousness and becoming a big thing in the media. As long as there have been vaccines, there have been people who have fought against compulsory vaccination. It's always been really tough to convince people that they need to do something for society and that they aren't making a big mistake. It's been played out over and over again every single decade since the 1850's.

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Anti-vaccination cartoon, from cartoon booklet, "Health in Pictures," 1930

So, it's stories, both in narrative or visual form, that resonate with people more than numbers and scientific studies. Can you elaborate on this in the context of the now-discredited 1998 Wakefield study that first claimed a link between the MMR vaccine and autism? Why has it had such a lasting impact?

The Wakefield study is really important because it shows how scientists and the lay population look at information differently. The original Wakefield study was a case series of twelve patients and was published in The Lancet. The scientific community then did large studies and meta-analyses looking at thousands of kids and completely discredited the original Wakefield paper. As far as the scientific community is concerned, that was great. That's how science works - you have a hypothesis, you run a test, and come up with a conclusion. Someone else can run the test differently and see how thing stack up. That's why the issue is settled in the scientific community. With the population at large, that's not the case. In 2009, 25 percent of people in this country still believed that vaccines cause autism. Over a decade after this study has been completely debunked and it was proven that the researcher was engaging in deliberate fraud, the public hasn't gotten that message. All these studies that all these scientists are running, what do they mean if no one really understands them or accepts them? That's why you have to think about the way scientists convey information. The anti-vaccination people do a really great job at getting their information out through social media, the Internet, by having spokespeople who can get through to someone who doesn't know what a p-value is but knows what autism looks like.

You're planning to train in pediatrics so you'll be navigating this first-hand - conveying scientific information in a way that resonates with parents and children. What do you think your approach will be, and how has this project informed it?

From a personal standpoint, my goal is going to be to get 100 percent vaccination rates. Part of that is going to be reading parents and seeing what appeals to them. For some, statistics will be great and they will want to see the studies. For some it will be telling them, "Hey, I've personally vaccinated all these kids and have seen them develop and do great." It's explaining how autism works and that there is no link to vaccination at all. There is no proven blanket strategy, so I think that individualizing it will be very useful to me.

What do you think is the path forward with vaccinations in our country? Are we going to see changes at the national level?

I think it is unlikely to see the federal government taking on this matter. This has really been a states' rights issue over the years. Unfortunately, it takes outbreaks like the one at Disneyland to spark change. Maybe it will be more outbreaks. Maybe that will wake people up. Maybe the California one will be enough and all the states that are starting taking up this issue will push through. But it's still really difficult in this country where you have such a vocal opposition. It's hard to be more than cautiously optimistic. I've seen things improve just over the last year - but still there are only three states with policies to limit vaccination exemptions. There are still 47 to go and I think that will take some time.

Types of Vaccine Exemptions
Exemptions differ on a state-by-state basis, but it boils down to three different kinds.

  • First, every single state allows for medical exemptions, and there are a lot of reasons why a child might need a medical exemption. For example, if you are receiving chemotherapy and your immune system is weaker, you don't want to get a live virus vaccine.
  • The second kind - and about 47 states have this - are religious exemptions. Again, it varies from state to state as to how much evidence you have to provide that you have a religious belief that is counter to receiving vaccinations.
  • The third kind - and I think seventeen states have these - are philosophical/personal belief or conscientious objector exemptions, and these run the gamut of pretty much anything. These are usually designed by the legislature as a catchall to let parents have a way to opt-out.
    For some states, like Wisconsin, it's just a check box on a form, you check "personal belief," and that's it - nothing else is required. In Georgia has you send in a notarized statement explaining the philosophical exemption, so you have to actually articulate the reason you are philosophically opposed to vaccination. New York has a religious belief exemption, and we also have the medical exemption. There is no philosophical exemption in New York.

*You can read more about Philip's research in his recently published articles "Storytelling in the context of vaccine refusal: a strategy to improve communication and immunization" in Medical Humanities, and "Childhood vaccination requirements: Lessons from history, Mississippi, and the path forward" in Vaccine.

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.

Emily_Milam

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.

G. Porubsky

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

Fostering Interdisciplinary Community: A Humanities Perspective

February 18, 2010 at 6:42 pm

Commentary by Jessica Howell, Ph.D., Wellcome Postdoctoral Research Fellow, Centre for the Humanities and Health, King's College London

Described as a "free destination for the incurably curious", the Wellcome Collection in London consists of several galleries, a cafe, bookstore and library. The library houses "collections of books, manuscripts, archives, films and pictures on the history of medicine from the earliest times to the present day". I knew that this particular library's holdings would be an invaluable resource for my research in the medical humanities, so I decided to pay the Collection building a visit, soon after I arrived in London this January. I was doubly interested because the Wellcome Trust, established by Sir Henry Wellcome's will in 1936 and meant "to advance medical research and understanding of its history", funded the Centre for the Humanities and Health at King's College London, where I hold my current position as postdoctoral research fellow.

I enjoyed the Wellcome Image Award gallery, which displays winning medical and historical images made by light and electron microscopy as well as illustration and photography. But I was perhaps most forcibly struck by "Medicine Man: The forgotten museum of Henry Wellcome", which exhibits objects from Wellcome’s personal collection. Sir Henry was apparently a dedicated gatherer of medical and anthropological artifacts and curiosities. Amongst the assortment are forceps, chastity belts, ceremonial masks, early surgical instruments such as bone saws, and even torture chairs. I found myself thinking of the exhibit for a long time afterwards. Imagine the research that could be done, and no doubt already has begun, on each of these object’s long, fraught histories, and what such research tells us about a culture's values, practices, even aesthetics. Because I found certain objects disturbing, I also felt responsible to pay even closer attention to what they had to teach me-about medicine's relationship with gender and race, as well as about common human experiences of birth, death, pain, suffering, and healing. I wished I had a medical doctor, artist and social scientist, amongst others, standing in the room, contemplating with me this window into complex and often troubling moments of human history.

Though I was alone at the Wellcome Collection itself, I am in the fortunate position of being able to participate in just such meaningful discussions in my role as Wellcome Research Fellow. I am part of a multi-strand program called the "Boundaries of Illness", convened in the Centre for Humanities and Health here at King's College. I work within a strand of this program titled "Nursing and Identity: Crossing Borders". For my project, I will examine the lifewriting of nurses traveling in the late nineteenth and early twentieth centuries under the auspices of the Colonial Nursing Association. I will analyze their work in terms of its implications for medical history, literary, postcolonial, gender and travel studies, and help to write a database for future researchers. To the research team at King's College, I bring a background in literary studies. I received my Ph.D. in English literature from University of California, Davis in 2007. My own work has been concerned with racial science and climate in nineteenth-century travel narratives. I applied to the research fellowship at King's partly due to my own long-standing interest in interdisciplinary scholarship and colleagueship. For example, while at UC Davis, I co-organized a medical humanities research group with Faith Fitzgerald (Internist and Professor of Medicine and Associate Dean of Humanities and Bioethics), and we also hosted two conferences on "Literature and Pathology."

Through these experiences, I have found that being part of an interdisciplinary scholarly community can enhance my own work in both tangible and intangible ways: on a pragmatic level, I produce better honed research when I analyze my arguments from alternate perspectives, testing the validity of my assertions outside of my own discipline. I may follow up leads provided by my colleagues that will take my work in new and creative directions. I also use research methodologies drawn from various academic traditions. Less measurable, but still critical to my work, are the interpersonal benefits: I find myself energized and encouraged when surrounded by scholars who have chosen this kind of study-speaking generally, I find that they tend to be more willing to explicitly discuss the ethical implications of their research, or even the underlying ideals and values they hold, such as human connection, compassion and understanding. Specifically, many of us in the interdisciplinary field of medical humanities believe that it is only through a meeting of the minds between biomedicine and other fields such as literature, art, philosophy and history that we can understand the experiences of patients and providers of care (roles that almost all of us will inhabit at some point in our lives). The Centre's website says it well: "Patient subjectivity and values - sometimes bundled together as 'the patient voice' - are expressed in a wide diversity of cultural objects and settings (texts, symbolic figurings rendered in portraits, films and in conceptual constructions), which it is the task of the Medical Humanities to identify, research and illuminate" (http://www.kcl.ac.uk/research/groups/chh/about.html).

As I have stated that I value my colleagues' diverse perspectives and the collaborative quality of interdisciplinary research, it would be remiss of me not to include the experiences of some of my King's coworkers. Dr. Rosemary Wall began her post in 2007, and so has seen the Centre develop through the stages of proposal, planning, and now implementation. She mentioned that it has been rewarding to help bring together scholars from within King's College and from other institutions who have common interests and complementary training, but may not have known each other or had the opportunity to share their ideas before (personal interview 2/4/2010). Ms. Elisabetta Babini asserts that, while "commitment to Medical Humanities" is "highly challenging", the field also has great potential to "broaden traditional research horizons." Both of my colleagues discussed the rich professional opportunities provided by their work in the Centre. As just one example, they are currently co-planning Screening the Nurse: Call to Service, a two-day event of talks and film screenings organized around the theme "British Nurses and Wars", hosted by the Florence Nightingale School of Nursing and Midwifery at King’s College in collaboration with the Imperial War Museum film archive (e-mail interview, 2/7/2010). These kinds of projects offer researchers in the medical humanities unique venues and opportunities through which to broaden their professional network and gain valuable cross-disciplinary experience, as well as to make their research accessible to the public. I am very pleased to have joined with the Centre in supporting its initiatives. Further, I look forward to sharing in the future some of my findings regarding nurses' writing, which I agree, with recent commentators Cortney Davis and Thomas Long, is a topic of ongoing interest.

References:
1 For more on Sir Henry's personal collection, see An Infinity of Things: How Sir Henry Wellcome Collected the World by Frances Larson. (Oxford: Oxford Univ. Press, 10 Sep 2009)

2 Within the "Nursing and Identity" strand of this project, I am supervised by Professor Anne Marie Rafferty, Dean of the School of Nursing and Midwifery, and Dr. Anna Snaith, Reader in Twentieth-Century Literature. My co-researchers include Dr. Rosemary Wall, postdoctoral medical historian, and Elisabetta Babini, Ph.D. student in Film Studies/ Nursing, who both kindly agreed for me to include their comments.

Nurse-Poet-Writer Cortney Davis Responds To Thomas Long’s Blog On Nurse Writers

January 6, 2010 at 4:32 pm

Commentary by Cortney Davis, MA, APRN, Nurse practitioner, Sacred Heart University Health Services, Fairfield, Connecticut

Thank you to Dr. Thomas Long for his excellent blog entry and for his continued championing of nurses' writing. I also wonder why nurse-writers don't have a wider audience. Specifically, as I see more and more narrative medicine courses offered to medical students, I wonder why many nursing programs still fail to utilize the creative writing of nurses-why not narrative nursing courses? After reading Dr. Long's blog, I asked my husband, a physician, why he thought nurse writers were not as well respected (and as widely read) as doctors who wrote. His answer was immediate: "Authority," he said. "People think that because doctors have more authority in the work place, they also have more authority on the page." There is certainly some truth in this, as Long points out. Doctors are often seen as the embodiment of strength and "curing" and nurses, whether male or female, are often seen as the embodiment of a softer, more feminine "caring"-and I think there are other factors at work here as well.

One reason nursing programs may have been slow to incorporate nurses' writing is the myth of "natural empathy." Some have assumed that those who go into nursing are already compassionate and empathic (sometimes they've even been seen as bleeding hearts, ruled by the emotions and not by the mind). Therefore it might seem that nursing students, those sensitive souls, wouldn't require the humanities to awaken them to their patients' suffering. The companion myth is that of the "distant physician." It's often assumed that medical students are more interested in the illness than in the patient and therefore would benefit from studying the humanities in order to become more empathic providers. Of course, neither myth is valid, although there is a kernel of truth in both. Indeed, when nurses first began publishing their creative writing, some of that writing was overly sentimental and, in some cases, poorly crafted. When doctors first began offering their creative writing, some of it was overly cerebral and occasionally cold. Now, after several decades, nurse- and doctor-writers have honed their skills and found their voices; the best of them are accomplished, professional and writing on equally high levels.

Another factor relates both to the question of who has the authority and to the myth of natural vs. learned empathy. "Nursing Education," that big generic machine, for many years also viewed, if secretly, physicians' work as having more authority, if not more worth, than nurses' work. This bias was spurred on by many things, including the belittling of the nursing profession by doctors, by hospital administration, by the media, and sometimes even by patients and nurses themselves. This led nursing educators to do their best to rid nursing programs of any hint of "softness"-that natural empathy taken to its limits-and to forge nursing education into a research-based, scientific endeavor. As Long notes, this brought the study of nursing from the hospital bedside to the classroom. Almost at the same time, in the 1970s, along came "medical humanities," the study of literature meant, among other things, to foster more empathic, nurse-like compassion in medical providers. As medical schools began offering courses in the arts, humanities and creative writing as a way to increase students' awareness of the "softer side" of caregiving, nursing programs hurried ever farther away from touch and ever closer to technology.

Nursing, it seems to me, missed the boat; only now is it, in some instances, trying to catch up. Still, the majority of nursing programs today have neither the time nor the inclination to offer humanities or writing courses to student nurses. If nursing students are asked to keep journals, the journals are too often seen as an exercise tangential to the real studies; when medical students are asked to keep journals, the journals are often lauded as intimate glimpses into the trials and triumphs of learning medicine-and some of those journal entries are published as beacons to guide other medical students. If the majority of nursing programs are not honoring the creative writing of nurses and using that writing to help guide their students, should we wonder why the names of the best nurse-writers producing poems, essays and novels today are not well known?

That said, some interesting things are happening which give me hope that, little by little, nurses' writing is moving into a more mainstream consciousness. Nurses' creative writing, while still for the most part under utilized within nursing education (and here let me recognize and thank Thomas Long and the many other educators who do value nurses' writing and fight to include it in their courses), is becoming more and more visible, as Long also points out, in the "secular" literary world. Rattle, an excellent and widely read literary journal, featured a "Tribute to Nurses" in the winter 2007 issue, publishing poems and essays by 24 nurses. Many of the poetry volumes, novels and essay collections by nurse-writers have been published by literary presses-among them the University of Iowa Press, Calyx Books, Beacon Press, Random House, and Kent State University Press-rather than by nursing presses. Many nurse-writers have won impressive literary awards-including National Endowment for the Arts Fellowships-which have no connection to nursing or medicine. It seems to me that nurses who write are finding new and exciting outlets and are being recognized not as nurse-writers but as writers.

Yet, within the halls of nursing and medical education, until we move beyond myth and presumption and accept that nurses and doctors are co-workers in the same mysterious and amazing world of caregiving; that we all long to find ways to deal with the complicated emotions our work engenders; that we all want to know what others like us are thinking and feeling; and that we all have essential stories and important contributions to make to students and to the humanities canon-well, until then, we nurses who write, although literary equals to physicians who write, will not enjoy equal recognition.

Remember The Nurses

December 30, 2009 at 5:01 pm

Remember the Nurses - Lithograph 1939 - 1945, Wellcome Library, LondonCommentary by Thomas Lawrence Long, Associate Professor-in-Residence, School of Nursing, University of Connecticut

Name three popular physician writers working today.
Atul Gawande. Pauline Chen. Oliver Sacks. Jill Bolte Taylor. Jerome Groopman. Rafael Campo. Deepak Chopra. Edward de Bono. Andrew Weil.

Well, that was easy.
Now name three physician authors who are part of the Western literary canon.
Hippocrates. Galen. The author of the Gospel According to Luke and of Acts of the Apostles. Hildegard of Bingen. Charles Eastman. Arthur Conan Doyle. Anton Chekhov. William Carlos Williams. Oliver Goldsmith. Thomas Browne. John Polidori. Oliver Wendell Holmes, Sr. Lewis Thomas. Thomas Bowdler (unfortunately).

An embarrassment of riches. That was easier still.
Now name three nurse authors, who are either writing today or are part of the literary canon.
All right, I'll give you twenty-four hours to get back to me.

Where Are the Nurse Writers?

Paradoxically, the healthcare professional field established by a prolific Victorian English author, Florence Nightingale (whose 1859 Notes on Nursing: What Nursing Is, What Nursing is Not has never gone out of print), finds few of its writers on the tips of our tongues. And even at the origins of professional nursing in the United States during the Civil War, one of America's most beloved authors, Louisa May Alcott, started her literary career with Hospital Sketches, an account of her experiences as a nurse in a military hospital.

Why are there so few well known nurse authors? And what nurse writers are ready to be discovered by a larger audience?

When I have asked nurse editors and scholars the first question, the answers have centered on two points. First, nursing has often been viewed (and until recently nurses viewed themselves) as ancillary, literally ancilla, handmaiden, a feminized, subservient profession deferring to the physician. Not only was the nurse not expected to have insights into the human condition; she (and the nurse usually was female) did not have the "room of one's own" to enable reflection and literary productivity. The physician had his (and the physician usually was a man) office as a retreat, while nurses just had . . . the nurses station-a public location at the hub of medical care and utterly lacking in privacy or solitude.

Second, nurses often were not educated for their profession in the tradition of the liberal arts and sciences. Instead they were frequently trained in hospital nursing programs, or since the second half of the twentieth century at community colleges in two-year associate of science degree programs. Baccalaureate programs in nursing have been a feature of the nursing curriculum since earlier in the twentieth century, but many nurses even today are not the products of that broadly general education.

Nursing Writing

Nurses seem uniquely equipped, however, to comprehend the whole person of the patient, spending considerably more time with the sick than physicians do and aware of the entire psychological, social, and spiritual inflections of their patients. Nurses have historically been encouraged to keep journals and diaries of their clinical experiences, so the raw material for memoir is in fact at hand. As Jane E. Schultz observes of the contrast between clinical accounts by Civil War military physicians and those by their nurses:

Though nurses' styles of self-expression differed widely, they wrote about their patients with a singular degree of material specificity, and they resisted surgeons' tendency to blur patients' individual characteristics. In their letters and diaries, they referred to patients by name, frequently mentioning hometowns, culinary tastes, or other distinguishing details. Often they quoted their conversations with soldiers, which surgeons who kept diaries rarely did. . . Surgeons' diaries do not show nearly the same individualization of suffering. They were more likely to refer to their patients in the abstract or to refer to the clinical details of a particular treatment without mentioning the soldier's name at all. (378-379)

Civil War nurse diaries are among the more vivid and moving accounts of the war, whether from the hand of the domestic Louisa May Alcott, or the sensationalist S. Emma E. Edmonds, author of the memoir Nurse and Spy in the Union Army. Moreover, feminist critic and literary scholar Elaine Showalter in an introduction to Florence Nightingale has characterized Nightingale as a major literary figure in English feminism, bridging Mary Wollstonecraft in the eighteenth century and Virginia Woolf in the twentieth.

Who are Nightingale's literary descendants working today? They are men and women, and they are many. They are working in a variety of genres, and their work has earned frequent anthologizing. Cortney Davis and Judy Schaefer's two collections, Between the Heartbeats: Poetry and Prose by Nurses (1995) and Intensive Care: More Poetry and Prose by Nurses (2003), have brought nurse writers to a wider audience. Schaefer's more recent anthology, The Poetry of Nursing: Poems and Commentaries of Leading Nurse-Poets, gives 15 nurse poets the space to present and to comment on three or four of their own poems, an unusual and engaging meta-analysis. An accomplished poet, Davis is also a talented essayist, whose recently published The Heart's Truth: Essays on the Art of Nursing encapsulates the relationship between clinical practice and writing:

. . . I find that when I'm not seeing patients, it's a struggle for me to write. It seems that for me, nursing and writing have become, over the years, inextricably bound. That intimate connection that links us, human to human, is essential both to my vocation and my avocation. (98)

Writers like Davis and Schaefer, Jeanne Bryner, Theodore Deppe, Veneta Masson, have published their work in distinguished literary journals, such as Minnesota Review, Prairie Schooner, Hudson Review, Poetry, The Sun, and Kenyon Review, as well as in their own books published by respected presses.

These nurse writers join an eclectic canon. Katherine Prescott Wormeley (1830-1908), an American nurse in the Civil War, was a highly respected literary translator, who turned works by Balzac, Daudet, and Dumas to English. Sarah Chauncey Woolsey (1835-1905), an American children’s author and editor, wrote under the pen name Susan Coolidge. Lillian D. Wald (1867-1940) was a community health activist and author of two memoirs, The House on Henry Street (1911) and Windows on Henry Street (1934). Ellen LaMotte (1873-1961) published several books, including travel and wartime nursing narratives. In addition, today nurse scholars publish their research in over 100 journals of nursing science and professional practice.

Florence Nightingale, whose collected works now runs to thirteen volumes in the edition published by the Canadian University of Guelph's Wilfrid Laurier University Press, put pen to paper in the service of a variety causes, not all of them related to health care. As Lytton Strachey observes in his profile of her in Eminent Victorians, Nightingale's dedication to spirituality led her to write a tract on the spiritual wellbeing of working-class artisans:

Then, suddenly, in the very midst of the ramifying generalities of her metaphysical disquisitions there is an unexpected turn, and the reader is plunged all at once into something particular, something personal, something impregnated with intense experienceaa virulent invective upon the position of women in the upper ranks of society. Forgetful alike of her high argument and of the artisans, [she] rails through a hundred pages of close print at the falsities of family life, the ineptitudes of marriage, the emptinesses of convention, in the spirit of an Ibsen or a Samuel Butler. Her fierce pen, shaking with intimate anger, depicts in biting sentences the fearful fate of an unmarried girl in a wealthy household. It is a cri du coeur . . .

The best of nursing writing shares this passion, a thirst for justice, an advocacy of vulnerable populations. Nightingale did not suffer fools gladly, and her view of the role of nurses went well beyond the ancillary, for as she wrote, "No man, not even a doctor, ever gives any other definition of what a nurse should be than this — ‘devoted and obedient.’ This definition would do just as well for a porter. It might even do for a horse. It would not do for a policeman."

Works Cited

Alcott, Louisa May. Hospital Sketches. Boston: J. Redpath, 1863.

Davis, Cortney. The Heart's Truth: Essays on the Art of Nursing. Kent, OH: Kent State University Press, 2009.

Davis, Cortney, and Judy Schaefer, eds. Between the Heartbeats: Poetry and Prose by Nurses. Iowa City: University of Iowa Press, 1995.

—. Intensive Care: More Poetry and Prose by Nurses. Iowa City: University of Iowa Press, 2003.

Edmonds, S. Emma E. Nurse and Spy in the Union Army. Hartford, CT: W. S. Williams & Co., 1865.

Nightingale, Florence. Notes on Nursing: What Nursing Is, What Nursing is Not. London: Duckworth, 1859.

Schaefer, Judy, ed. The Poetry of Nursing: Poems and Commentaries of Leading Nurse-Poets. Kent, OH: Kent State University Press, 2006.

Schultz, Jane E. "The Inhospitable Hospital: Gender and Professionalism in Civil War Medicine." Signs, 17.2 (Winter, 1992), pp. 363-392.

Showalter, Elaine. "Florence Nightingale." Sandra M. Gilbert and Susan Gubar. The Norton Anthology of Literature by Women: The Traditions in English. New York: W.W. Norton, 1996. 836-837.

Strachey, Lytton. Eminent Victorians. New York: Putnam, 1918. Retrieved from http://www.bartleby.com/189/204.html

Wald, Lillian D. The House on Henry Street. New York: Holt, 1915.

—. Windows on Henry Street. Boston: Little, Brown, 1934.

Dr. Fleischmann Draws Dr. Munk In Terezin

September 28, 2009 at 10:21 am

Portrait of Dr. Erich Munk, by Dr. Karel Fleischmann. Collection of the Art Museum at Yad Vashem.

Commentary by Michael Nevins, M.D., author of Jewish Medicine: What it is and Why it Matters and A Tale of Two "Villages": Vineland and Skillman, NJ. This commentary written in conjunction with an exhibit at New York University School of Medicine, Sept. 24-Oct.19: Art and Medicine in Terezin.

All of us felt a sense of sliding helplessness, again and again, day after day, night after night, you descended toward the abyss whose bottom was unfathomable….you felt only the downward movement, the fear, what next?

These chilling words, reminiscent of an earlier Prague resident Franz Kafka, were written in April, 1942 by Bohemian dermatologist Karel Fleischmann. With the Nazi takeover of Czechoslovakia in 1939 the situation for Jews had deteriorated and anti-Semitic racial laws restricted the doctor's ability to practice. Now at age forty-five, Dr. Fleischmann (b. 1897) awaited deportation to Terezin, the recently established ghetto town some forty miles to the north.

The morning of our deportation was pitilessly cold. The clouds as black as ink, the rising sun blood red in the background…darkness on earth, darkness in our souls…a nightmare. We arrived in Terezin in the evening. Really, you did not arrive, you were consigned. Someone managed for us for we no longer were we - we had become an object, a number, a ground substance, a kneaded mix of humans….Tired to the bones, sick, longing for quiet and sleep, we came into the cellars and dark holes of the barrack…still the mass was mixed, kicked and reduced to nothing, dirtied, put on the floor, kneaded and rolled till we became a formless porridge, a heap of rubbish….poisoned with the taste of the stable.

Dr. Fleischmann had been advised that upon arrival in Terezin he should look up the head of the ghetto's Health Department Dr. Erich Munk, but making contact was difficult. Known for his scrupulous integrity and organizational ability, the thirty-eight year old radiologist Munk (b. 1904) had been selected by Zionist leaders to direct what would become a massive medical apparatus.

Whereas Karel Fleischmann was prolific with more than a thousand of his diary notes, poems and art work surviving the war, only a few fragments of Dr. Munk's words remain. The following probably written during his first year at Terezin describes his first unpleasant impressions:

We had not yet freed ourselves from the needs of comfort, social norms, social stratas, prejudices…We had not yet realized that we have been set apart for an unknown length of time into an uncertain future. The impressions are as damp as the weather had been. Muddy like the mood of us all. Was I desperate? No. I was only deeply touched. I needed two nights and two days to overcome my deep depression, to be able to overcome my own self. I was unable to concentrate my thoughts on work….It was at noon of the third day that I suddenly succeeded in breaking through and submerged myself straight into work. Work saved me…ever since then I haven't stopped working.

As they endured their personal metamorphoses, Drs.Fleischmann and Munk learned a crucial survival technique - they could help themselves best by helping others.

Terezin

In 1780 Emperor Franz Josef, the emperor of Austria, built a garrison town in Bohemia which he named Theresienstadt - the city of Theresa, after his mother Queen Maria Theresa. After the formation of Czechoslovakia in 1918 the town was called in Czech Terezin. Then with German occupation during World War II, again it was officially designated as Theresienstadt. In later years both names were used depending upon the perspective of the speaker or writer. English language references tend to prefer the shorter Czech version which is used in this essay.

The Terezin ghetto was euphemistically described by the Nazis as "a city of refuge" or sometimes as "Hitler's gift to the Jews." In truth it was an assemblage camp where Jews were concentrated for varying periods until they were deported to "the East" - another euphemism for death camps, particularly Auschwitz-Birkenau. At first,Terezin was intended for Czech Jews but, before long others mainly from central Europe were shipped there - affluent, privileged, older people — rabbis, scientists, war veterans, musicians, artists — as many as 58,491 in September, 1942, all sharing space with rats, lice and fleas. Few of them suspected what lay ahead; many felt fortunate to be in this safe haven - some even paid for the privilege. Famously, in June, 1944, a delegation from the International Red Cross visited and couldn't, or wouldn't, appreciate the masquerade. They reported favorably to the world on conditions in what Nazi called the "model city" — in truth it was a Potemkin's Village - a place of false facades.

Terezin is often remembered as the concentration camp where guards turned a blind eye to cultural activities that were put on by the prisoners. Perhaps these were permitted for the purpose of propaganda or to temporarily appease the doomed inmates. There was a cabaret of sorts with a jazz band and performances of Verdi's Requiem and the children's opera Brundibar were sung by doomed choruses. Hundreds of lectures were given by famous scholars. Why did they do it? For some it may have been an escape into a semblance of normalcy; for others it represented a proud act of defiance - of being able to act human in the midst of depravity. Yet, few prisoners actually could attend the cultural events - most were too exhausted from work or were literally starving. Although technically Terezin was not a death camp, between November 1941 and May 1945 of nearly 160,000 people sent there, some 36,000 died of illness or starvation; the rest, about 88,000, were deported to extermination or work camps with only a few thousand of these surviving the ordeal. When the Russians liberated Terezin in May 1945, there were only about 30,000 survivors, more dead than alive. Within weeks many more died of a typhus epidemic. Of more than 12,000 children who passed through Terezin, only 325 survived.

Health Care in the Ghetto

Terezin's main hospital was located in a large barrack which had been built in 1780 to service military and civilian populations of about 7,000 people. It was ill-suited to care for the needs of 40 or 50,000 prisoners at a time and although solidly built with high vaulted wards and a huge attic, it was a hospital with no beds or bandages, no sterilizing equipment or instruments. Nevertheless, there was an abundance of knowledge and resourcefulness among the physicians. Dr. Munk's Health Department was able to collect some antiquated or broken equipment; glasses, orthopedic shoes and trusses were fitted and repaired, test tubes were manufactured and eventually a central pharmacy was stocked from medicines confiscated from new arrivals. Later this was supplemented by supplies brought in from the defunct Jewish hospitals and clinics of Europe. And so, gradually, a semblance of a functional hospital emerged.

Fleischmann's Portrait of Dr. Munk

Concerning his art work at Terezin, Dr. Fleischmann once wrote "I wanted to see the world differently and I could perceive it by making many hundreds of drawings." His subject matter frequently was mundane while at other times his art hauntingly depicted life in the ghetto. He was especially intrigued by the thought of drawing "the Munk." Here Fleischmann considers how he might develop the boss's portrait in geometrical terms according to Cezanne's cubist style:

I have repeatedly tried to draw him. It's not easy. ..I made a whole lot of drawings with little success. Dr. Munk says about himself that he does not have a photogenic face. Maybe he is right. [But] from a painter's point of view his face is not only most interesting, but his entire stature and movements which are like counterpoint in a subconscious composed symphony movement

I'll have to set up two, slightly upstanding but beautifully formed ears, above the ears a wreath of shining dark brown hair on the crown of the head something that once had been a bushy mane - without being impertinent…[now] a head which can be called bald.. It should not be [overemphasized] because this is a weak point of the otherwise brave Maccabee…The head, although small is proportional to the upper part of the body [and] establishes symmetry and almost a monumental impression. Yet the most remarkable are the eyes - dark, deep, seemingly with no transition from the pupils to the iris, shadowed by the sleeplessness of long nights, supported by some striking crossbeams under the sunken cheeks.

The center is marked by an aristocratic finely-cut nose betraying a strong spirit, a proud person; it is a brave man who is facing you. In the physically small head lies a mighty brain. This small head is not the way a puppet's head is put on. It is a real organic entity, an integral part of the rest of the body. It's also the hands that impress you so. They are big, much too big for the small face but not malformed or clumsy, quite the contrary. They are strong and betray knowledge and feeling for what they hold… These are the hands of an energetic, yet gently touching surgeon.

When you see the gaunt man with his inflamed eyelids and tired mouth, how relentlessly he works for the welfare of the Ghetto inmates… then you can't lag behind him. For me personally, Dr. Munk has become a real experience. Rarely have I met people of his stature. It will be an honor for us all to be able to say that commissioned by the Health Department of Ghetto Terezin we were permitted to work together with Dr. Munk.

(Karrel Fleischmann's drawing of Dr. Munk is in the collection of the Art Museum at Yad Vashem.)

Remembering Karel Fleischmann

Karel Fleischmann began one of his last poems with these words:

Nobody will hear my song
The world of my time ends behind these walls.

But the doctor was mistaken. After the war's end, more than a thousand of Fleischmann's drawings, written notes and poems were found and collected in archives in Czechoslovakia and Israel. They provided valuable testimony because as doctor-artist-writer he was able to see and record the entire panorama of suffering including hunger, fear, overcrowding, sickness and brutality. Gradually the world became aware of Karel Fleischmann's unique contribution but only a small amount of written material was translated into English. Then in 2004 an article appeared in the International Journal of Dermatology which described the doctor's life. The authors Leonard Hoenig of Florida and Tomas Spenser and Anita Tarsi of Israel concluded their review by noting that although Karel Fleischmann perished, his dream for a better future endured, declaring that it is up to each of us to help make it a reality.

This blog essay has been adapted from a longer paper.

References and Acknowledgements

Primary material that has been reproduced here in italics was extracted from unpublished documents found in files of the Theresienstadt Martyrs Remembrance Association, Beit Theresienstadt (BT) at Kibbutz Givat Haim-Ihud in Israel. These had been translated by others into English and, in turn, I have slightly edited or resequenced portions for the sake of coherence. If in the process, factual errors may have inadvertently occurred, they are my own responsibility. Lydia Shmolka of BT translated some documents into English from their Health, Altestenrat and Erich Munk files. Several of Dr. Fleischmann's journals and poems which depicted the doctor-writer-artist's prewar work were translated into English by Hana Houskova and reproduced an unpublished biography Rack of Time (BT Karel Fleischmann File No. 601.) Other useful sources were Vera Schiff's memoir Theresienstadt: The Town the Nazis Gave to the Jews (Toronto: Lugus, 1996) and Ruth Bondy's Jakob Edelstein. Elder of the Jews (New York: Grove Press, 1981.) The best English language biography of Dr. Fleischmann is the reminiscence Dr. Karel Fleischmann: The story of an artist and physician in Ghetto Terezin by Leonard J. Hoenig, MD, Tomas Spenser, FRCGP and Anita Tarsi of Beit Theresienstadt (International Journal of Dermatology 2004: 43. 129-135) and the accompanying Commentary by A. Bernard Ackerman, MD The Importance of Remembering Karel Fleischmann. I wish to acknowledge Oded Breda, the manager of Beit Theresienstadt, and historian Dr. Margalit Shlain for their constructive suggestions.

Celebrating July 6

July 6, 2009 at 10:21 am

Scan of an article -

Commentary by Bert Hansen, Ph.D., Professor of History, Baruch College, The City University of New York. Author of Picturing Medical Progress from Pasteur to Polio: A History of Mass Media Images and Popular Attitudes in America (Rutgers University Press, 2009).

In people's minds, July 6 rings no bells. It lights no anniversary fireworks. Yet we all live in a world of new discoveries, headlines proclaiming new cures, and the persistent expectation that new advances will keep coming. Those key features of the modern world were born on July 6, 1885, in a revolutionary shift in ordinary people's expectations. An old-style medicine that honored white-haired doctors and traditional practice at the bedside was quickly replaced with one characterized by novelties born in laboratories.

The atomic age is readily dated to August 6, 1945, when the bomb exploded over Hiroshima. Biology celebrates November 24, 1859, the publication date for Charles Darwin's Origin of Species. Molecular biology celebrates 1953 for the journal article in which James Watson and Francis Crick proposed their double helix model for the structure of DNA molecules. In 1955, headlines blared "Victory over Polio: Salk's Vaccine Works." Yet Salk's shots were not the start of laypeople's enthusiasm for medical advance, they stood in a tradition that began with another kind of injection in the late nineteenth century.

The medical revolution began very quietly in Paris on July 6, 1885, with the first human test of shots to prevent rabies a a relatively uncommon, but widely feared and absolutely fatal disease. Nine-year-old Joseph Meister, mauled on July 4 by a rabid dog, received the first of thirteen injections with a vaccine not yet tested in humans. Louis Pasteur, who developed the remedy, was nervous, and none but his most trusted laboratory associates were present. For about three months there was no publicity.

But within six months a largely caused by events in the United States a headlines around the globe carried news of a medical triumph such as the world had never seen. Children threatened with a horrible death from rabies were saved by these new injections. For the miracle cure, thousands of people bitten by dogs and wolves flocked to Paris from the Americas, eastern Europe, north Africa, even Siberia.

Media coverage in the United States played a unique role in creating a popular enthusiasm for the cure and a new idea of medical progress, both here and aboard. New tools of journalism were at hand: banner headlines, the reporter's interview, the human-interest story. Cut-throat competition among the penny papers produced an incessant drive to collar readers with exciting stories and to grab them again the next day with new developments.

Story-hungry papers were ready to pounce in December, when little children in the streets of Newark were bitten by a mad dog and a local doctor's letter to the editor suggested they be rushed to Paris for the new cure a with donations from the public if their parents could not afford it. Within hours factory employees were collecting loose change and delivering it to the doctor's office. Within two days, papers as far distant as Chicago and St. Louis reported the bites, the donations, and a trip to Paris in the offing for four working-class boys. The story was an editor's dream: innocent children threatened by an agonizing death, public charity, the problem of stray dogs, doctors and scientists to be interviewed, and a voyeuristic story of the boys' transatlantic voyage

Artists produced sketches of the boys, the dogs, the local doctors, M. Pasteur, and the steamship. Papers added editorials on science and long articles about Pasteur's earlier discoveries. The over-the-top coverage was quickly parodied with color cartoons in the weekly humor magazines, Puck and Judge. Much of the news coverage was silly and might have been ephemeral but for the fact that there emerged within it one entirely unprecedented image a the heroic scientist creating medical advances through laboratory research. The public became religiously devoted to this figure.

A rabid dog in Newark produced something no publicist could have achieved. And while the media bonanza was most striking in the United States, medical advance gained similar attention in other countries through the new rabies shots being given in Paris. Within three years, world-wide donations from schoolchildren and from princes built the Pasteur Institute in Paris, followed soon by a score of daughter institutes around the world.

Last year when two Pasteur Institute scientists received the Nobel Prize in Medicine for their identification of the virus responsible for AIDS, the world applauded them for a major breakthrough of modern medicine, a discovery that depended on a tradition just a little more than a century old, the powerful institutionalized process of research and development.

It all started when a boy was injected with weakened virus to save his life. He lived, he thrived, and he became a media celebrity.

In appreciation for rabies shots a but even more for the role of the press in creating the new idea of medical progress, let us all celebrate July 6.