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.

Two Doctors, Two Generations: Q&A with Dr. Barron Lerner

June 23, 2014 at 12:11 pm

On May 6, 2014, Barron Lerner, MD, PhD, kicked off the Lerner Lectureship series with a talk that explored the evolution of medical ethics through the lens of his father's and his own practice of medicine. Dr. Lerner's father, Phillip I. Lerner, MD, was "a revered clinician, teacher and researcher who always put his patients first, but also a physician willing to 'play God,' opposing the very revolution in patients' rights that his son was studying and teaching to his own medical students." The talk built upon Dr. Lerner's new book, The Good Doctor, which touches on issues of patients' rights, autonomy, generational friction, and the remarkable bond between father and son.

Below, Dr. Lerner discusses some of his father's unique stories and what it means to be a "good doctor."

The Lerner Lectureship is generously supported by Sam Miller, a grateful patient of Dr. Phillip Lerner.

Why did you write The Good Doctor?
There are several reasons. First, when someone is a historian of medicine and had a father who kept copious journals about his career as a physician, it is hard not to imagine fashioning this information into a book. Second, including medical school, I have now been in medicine for thirty years. To the degree that I have achieved some wisdom, I figured it was the time to reveal it. Third, my agent, Robert Shepard, has been trying to get me to write a trade book forever. So I finally succeeded. Fourth, and most important, the book is a tribute to my father, who I believe exemplified what it means to be a "good doctor." It is a taller task these days, but one I think that those of us in medicine should try to embrace.

What did you learn about your father from his journals and your other research?
The main "finding" about my dad's career was how he felt it was his duty, having mastered the scientific literature and learned as much as possible about his patients' lives and values, to make the right clinical decisions for them. This made him an unabashed paternalist and someone who, in certain circumstances, was even willing to mislead patients to get them to do the "right thing." As his career progressed, and bioethics and patients' rights emerged, he begrudgingly began to incorporate some of the new dogma about informed consent into his practice. But he remained strongly opposed to the reflexive use of algorithms and the practice of giving patients menus of diagnostic or therapeutic options. He believed that these approaches were not congruent with the true practice of medicine.

What were some of the most interesting stories you discovered?
Well, I guess you could say there were good and bad ones. One of my favorites was the time that my father got an elderly Orthodox Jewish woman to agree to an open lung biopsy by getting one of his infectious diseases buddies, who was a devout Catholic, to do a consultation on the patient. When this doctor took out his rosary to pray for the woman, she could not say no. In another case, my dad not only diagnosed meningococcemia, a severe bacterial blood disease, at a patient's home, but deduced that she had recently been playing tennis by the fact that the rash was worst in the area of her right forearm.
On the flip side, there is the story that starts the book in which my father placed his body over a recently-deceased patient to prevent his colleagues from resuscitating her. As the patient did not have a DNR order, this violated both the legal and ethical standards of the day. He also tried to get doctors and nurses to give both of my extremely-ill grandmothers enough morphine to get them to stop breathing. But even in these instances, my dad was acting according to his fervent beliefs about what it meant to be a compassionate doctor. After preventing the CPR, he wrote that he had acted based on his "30+ years as a physician responsible for caring and relieving the pain of my patients who can't be cured."

What lessons do your dad's and your medical careers reveal for future physicians and health care reform?
I would first point out that there is no going back to the paternalism of my dad's era. Patients' rights are here to stay. Plus, modern doctors do not have the time to practice the intensive, patient-centered care that my father did. But there are ways in our modern system to replicate some of what my dad did and stood for. There is a bit of a backlash against patient autonomy, for example. Patients may be quite willing to take advice from physicians that they know and trust, even about end-of-life issues. And although office visits may be only 15-20 minutes, it is still possible to spend a few minutes discussing what is going on in a patient's life. I like to write down what we discuss in my notes and bring it up at the next visit. And the doctor-patient relationship does not only have to occur via face-to-face encounters. Innovative programs are using phone calls, Skyping and e-mailing to allow busy physicians to stay in better touch with their patients.

The Social Construction of Cancer - Part 3

November 27, 2012 at 11:22 am

Editor's Note: This is the third of four installments from guest blogger Dwai Banerjee, a doctoral candidate in NYU’s department of social anthropology. Images illustrated by Amy Potter, courtesy of Cansupport.

Part III

In a later visit with the homecare teams, I met Rajesh - a 29-year-old man who has been battling cancer since his teenage years. The walls of his room in a dense middle-class neighborhood were bare but for two pictures - one of a Hindu deity and another of his parents who had passed away in an accident when he was still young. Rajesh had contracted cancer while working in a chemical factory in his late teens. The cost of his treatment led him to lose the little property that his parents had left him when they had died. The relatives that he lived with now took him in, but refused to extend any form of empathy or care. The stigma of the diagnosis of 'cancer' along with fears of its communicability saw to his isolation in the small verandah of the house. Yet, Rajesh's will to live was strong; on his own, he would travel to the All India Institute for Medical Sciences (AIIMS) early in the morning, negotiate the intricacies of the bureaucratic processes and make himself available for treatment.

As it stands, effective public health insurance is by and large absent in the Indian health scenario. In its place, the only financial respite for the poor comes in the form of subsidized treatment at government facilities. The bureaucratic procedures involved in procuring these government grants are daunting at best; very few cancer patients are able to transact the opaque bureaucratic process within the time allowed by rapidly progressive malignancies. Fortunately in Rajesh's case, where kinship had failed, a local network of knowledge and care stepped in. Cansupport and a sympathetic AIIMS doctor collaborated together to procure both a part-time nurse to care for Rajesh, while also taking him through the process of applying for a set of government grants.

In my conversations with Rajesh, it became clear that the years battling both the disease and the public health system and spent him. Time and again, his upbeat demeanor would collapse; at the end of one of our conversations as I made to leave, he stated baldly that if the disease returned he would not fight it again. It had deprived him of years of income and left him at the mercy of a family that had not cared for him at his most vulnerable. He had become the errand boy of the locality, earning his room's monthly rent by doing chores for his family and neighbors. His resentment towards his family was something that he had been forced to learn to hide; working for them allowed him to transact the complicated business of 'living on' with the disease. Over the next few weeks, Cansupport would try and work with its funders to set Rajesh up with a food-cart, to gain him the monetary security and independence he needed. While the biology of the disease was now in remission, the collapse of the infectious life of cancer had spread outside the body, jeopardizing his will and ability to carry on.

Dwaipayan Banerjee is a doctoral candidate at the department of social anthropology at New York University. Prior to his doctoral candidacy at NYU, he graduated with an M.A. and an M.Phil in sociology from the Delhi School of Economics, India. He has recently completed ethnographic work concerning the experience of cancer, pain and end-of-life care in India. His research follows the circulations of these experiences across different registers - language, medicine, law and politics. His broader interests includes working at the intersection of philosophy and anthropology, as well producing and studying ethnographic film and media.

The Social Construction of Cancer - Part 2

November 14, 2012 at 3:54 pm

Editor’s Note: This is the second of four installments from guest blogger Dwai Banerjee, a doctoral candidate in NYU's department of social anthropology. Images illustrated by Amy Potter, courtesy of Cansupport.

Part II

However, at this point, Shambu and Rohini's story took a sharp turn. The palliative care team I was visiting with discovered that, partly because of not collectively acknowledging the extent of the disease, Shambu and Rohini had started visiting a new neighborhood private 'ayurvedic hospital.' This hospital claimed to be able to completely cure cancer, provided that the patients pay whatever was the breaking limit of their financial ability. Perfectly aware that it was not her place to recommend or dissuade a line of treatment, the counselor restrained her own opinions. As the family talked, it became clear that to avail this therapy, they were considering risking their son's future as well as their ability to remain in their home. Shambu had been the sole breadwinner in the family, and given the imminent possibility of his passing, such decisions could have catastrophic consequences. The counselor still remained non-committal on the viability of this promise of cure, but skillfully urged Shambu and his wife to talk and think through what they were doing.

Soon, as they talked about their options for the first time, Shambu and Rohini started complaining bitterly about the treatment they had received at this hospital. The self-purported physician had refused to come into contact with the patient, or even take a medical history. Instead, their conversation had revolved around the staff ascertaining what the family could afford. (The counselor was to later tell me that many such 'alternative' hospitals had sprung up around lower-income neighborhoods, and for the urban poor at the margins of an overcrowded public health system, these were unsurprisingly seductive lures.) Soon afterwards, Shambu began to narrate his own life, telling the story of how he had planned his own insurance policies based on an astrological prediction that he would contract cancer, but how that prediction had fallen short by two years and wrecked havoc with his plans.

To my surprise, I began to see how the counselor's decision to listen patiently had allowed the space for these narratives to develop, and how the family now began the slow process of coming to terms with the prognosis. This would certainly not be the last word on the matter, but the team's skilful handling of the sensitive ways in which illness knowledge circulates ensured two vital things. On the one hand, they were careful not to heavy-handedly tear the web of careful ruses that continued to bolster the family and the relations between them and the social worlds around them. But at the same time, they laid the groundwork so that these partial denials would not financially ruin the family in the near future. Thus, the team facilitated the process through which Shambu and Rohini could place the illness within a comprehensible narrative of their lives, while beginning to prepare for what was to come.

Dwaipayan Banerjee is a doctoral candidate at the department of social anthropology at New York University. Prior to his doctoral candidacy at NYU, he graduated with an M.A. and an M.Phil in sociology from the Delhi School of Economics, India. He has recently completed ethnographic work concerning the experience of cancer, pain and end-of-life care in India. His research follows the circulations of these experiences across different registers - language, medicine, law and politics. His broader interests includes working at the intersection of philosophy and anthropology, as well producing and studying ethnographic film and media.

The Social Constructions of Cancer

November 2, 2012 at 12:03 pm

Editor’s Note: This is the first of four installments from guest blogger Dwai Banerjee, a doctoral candidate in NYU’s department of social anthropology. Images illustrated by Amy Potter, courtesy of Cansupport.

Introduction

The contemporary landscape of healthcare in Delhi inspires very little confidence. The lack of public insurance, scarcity of resources and rising cost of care in the vast network of private hospitals has ensured that for much of the city's poor, the diagnosis of cancer comes without any hope of treatment. Even at the best public health institutions, waiting lines for chemotherapy extend for months, compounded by the fact that over 80% of patients present at incurable stages. In the four-part entry that follows, I show that palliative care -far beyond its commonplace association with comfort at the end of life - is an urgent, irreplaceable and imaginative intervention that seeks to both diagnose and treat the social costs of the disease amongst the urban poor in India. I show that in its understanding of the form of the worlds that both collapse around and emerge through the disease, palliative care is really the condition and prerequisite of therapy, rather than its failure.
The anecdotes here come from a year of ethnographic fieldwork following intensive care, public health and oncology in India. Specifically, I describe some of my experiences working with and studying Cansupport, a pioneering palliative care organization in Delhi that provides home-based psychological and physical support to lower-income advanced stage cancer patients.

Part I

One of the first things that came to light when exploring cancer care in India was that knowledge of the prognosis was an extremely convoluted matter. From my first days in working with home-care teams, I was told to never mention the word 'cancer': the understanding was that patients hardly ever 'know' that they have the disease. Needless to say, this came as quite a surprise. Later on, analyzing the intake forms of about 2000 patients while working as a consultant at India's largest public hospital, I realized that about 85% of cancer patients were indeed recorded as 'not aware' of either their diagnosis or their prognosis. Delving into the emergent literature on 'psycho-oncology' in India, I began to realize this was a well-recognized problem within the emergent discipline. But it took several weeks of ethnographic work in the homes and neighborhoods of patients before the meaning of "awareness" and "denial became clearer to me.
In one of the early days of the Delhi winter, I accompanied a team on a visit to the far eastern borders of the region. We were greeted by the patient's wife - Rohini - and taken inside a room with two beds. On one lay Shambu, a former life-insurance salesman who presented with an advanced stage of the disease. In a pattern that often repeated itself, once Shambu's initial physical discomfort was taken care of, the counselor turned her attention to the question of the family's 'awareness' of the diagnosis. It was during interactions such as these that I realized the stakes of 'knowledge' around cancer. First, in a public health system in which oncologists see over a hundred patients in the space of a few hours, the communication of a diagnosis and prognosis - often across barriers of class and language - is often a half-achieved ideal at best. Second, even if a sense of the diagnosis is communicated and therapies undertaken, I realized that beyond the space of the hospital, just the hint of the word 'cancer' has the powerful potential to ostracize the patient from social life. Landlords would evict cancer-marked families, neighbors would suspend social interaction, marriages in the family would be jeopardized, and cremators would refuse the body.
Shambu and Rohini's case captured this double elision. The counselor's tactful conversation with Rohini elicited that she had a hazy but more-or-less accurate picture of the bleak prognosis, but that Shambu himself had not been explicitly 'told'. A separate conversation with Shambu revealed that he too was not as much in the dark as Rohini imagined. In a situation that recurred almost inevitably, both partners had tried to keep each other in the dark, firm in their conviction that putting the diagnosis into words would collapse the world of their loved one. They each recognized not only the power of the diagnosis to inflict psychic harm on the self of the patient, but also the threat of being marginalized and isolated from their extended family, their neighborhood and their friends. The world they had built around cancer, a world they had lived in for almost two years, had no place for its acknowledgement in language. To label this complicated work of living together as living in ignorance or denial would do it a great disservice. The work of home-care that took shape recognized this and often pulled back from pushing the disease blindly onto the surface of words.

Dwaipayan Banerjee is a doctoral candidate at the department of social anthropology at New York University. Prior to his doctoral candidacy at NYU, he graduated with an M.A. and an M.Phil in sociology from the Delhi School of Economics, India. He has recently completed ethnographic work concerning the experience of cancer, pain and end-of-life care in India. His research follows the circulations of these experiences across different registers - language, medicine, law and politics. His broader interests includes working at the intersection of philosophy and anthropology, as well producing and studying ethnographic film and media.

Walk a Mile in My Moccasins

May 9, 2010 at 5:05 pm

photograph of native american man and woman 1898

Commentary by Amy Ellwood, MSW, LCSW; Professor of Family Medicine & Psychiatry, University of Nevada School of Medicine, Las Vegas, Nevada

Communicating Through Story

Storytelling has been around since the dawn of time. Before the invention of paper, the Gutenberg press, telephone, television, internet, Kindle, texting, tweeting, Skyping, and emailing, people communicated by actually talking to each other face to face. Before language evolved, animal species communicated through grunts, howls, screeches, and gestures. Body language and micro expressions say more than most verbal communication (Ekman, 2003).The story teller often had a place of status in tribal cultures because he/she was the keeper of the tribe's history. When there was no written word, people would gather around the fire and tell stories. Stories provided entertainment, education, history and cultural preservation (Biesele, 1986). Adults and children alike, fully present, would sit with each other listening to the stories. Sharing time and history helped to develop a sense of community and adaptation.

Today many of the younger generation communicate with electronic devices in incomplete sentences and symbols rather than talking to another person. The context and body language are obliterated. Watching someone fixated on an inanimate smart phone while texting reminds me of a baby mesmerized while watching a crib mobile. Smart phones have positive uses but the list of problem behaviors associated with smart phones is growing (Bianchi, Phillips, 2005). Some of the problems include "BlackBerry Thumb" (Avitzur, 2009), texting tendonitis (Menz, 2005), increased risk for automobile accidents, escape from aversive situations, loss of sleep, decreased work productivity, excessive mobile phone bills, and others.

Reading Stories with Resident Physicians

Within the medical culture, communication is often a staccato-like list of acronyms and laboratory data shared among medical professionals. Translating this information into a language that the patient or patient's family can understand to make informed decisions is difficult for some clinicians. Developing empathy for those experiencing a health crisis and teaching about empathy can be challenging. Some feel that you either have it or you don't, based on lessons learned in the family of origin and quality of attachments. Using medical humanities concepts and tools to teach about ethics, empathy and other issues is a newer approach in medical education that is becoming more prevalent.

Several years ago I attended a family medicine conference where one of the workshops was on medical humanities. We read poems, short stories and discussed ways literature could be used to teach in medical education programs. I had been using movie segments to teach about various behavioral science topics for years (Alexander, 2005). Following the humanities workshop, I decided to try something new that would be more interactive.

Family Medicine and OB/GYN Residents Read "Indian Camp"

After perusing many short stories from my own library, I selected "Indian Camp" by Ernest Hemingway. Resident teaching conferences are usually one hour. It was important to find a story that was not too long or too short, too simple or too complex. This is a short story of a white physician who is called to an Indian camp in the Great Lakes area to assist an Indian woman in prolonged labor. The white doctor takes his young son and the child's uncle along. Other characters in the story include the birthing Indian woman, her husband, an old Indian woman, and the Indian guides. The woman has been in labor for days and is not progressing. Her husband lies in the bunk above her because he had cut his foot with an ax three days before. The doctor tells his young son that, "her screams are not important". The doctor does a crude C-section while the young boy witnesses the birth of the infant. In the bunk above, the Indian husband slits his throat from ear to ear and the blood pools down to the bunk below. On the way home, the young boy asks his father if ladies always have a hard time having babies and wonders if many men kill themselves. The doctor tells him that no, not many men kill themselves and that birthing babies is not difficult. The white men then get back in the canoe and return to their white world.

"Indian Camp" can be read in 10-15 minutes, although resident physicians whose primary language is not English might need more time and might not get the subtle nuances of the story. The story is an initiation story from life to death. The images of light and dark mirror the events in the story and the author's own life. "Indian Camp" is filled with issues for discussion: gender, culture, power, Native American healing practices, suffering, suicide, impact of witnessing trauma on a young child, and much more. After the residents read the story, I had them break into groups of 2-3. A colleague helped make fold over name cards that were placed on the table in front of each group. Each card had the name of one of the characters in the story and with a clip art picture of the character.

The story is told from the perspective of the doctor's son, not from that of the birthing mother. The residents were asked to tell the story from the perspective of the other characters. As a family systems trained clinician, I have learned to listen to the other voices in the family narrative. Medical education tends to focus on one system using a high powered lens. Asking probing questions about the other characters’ perspectives helped residents to see from a wider lens.

Another faculty member and I started the discussion by asking, "Is Dr. Adams a villain or hero?" What did it mean when he didn't hear the woman's screams? Why did he bring his young son along? Why was the uncle there? Why did the Indian husband kill himself? What was it like for the Indian medicine woman to have a white male come in and take over? These are questions that resonated in my mind when reading the story for the first time.

The family medicine residents quickly focused on the issues of gender and power as well as what it must have been like for the Indian medicine woman to have a white male physician come in and take over the care of the laboring Indian woman. In many tribal cultures, men are not allowed in the birthing hut. Family medicine residents wondered why the doctor used crude instruments rather than bringing his own instruments. All of the family medicine residents expressed concern for the doctor's young son who witnessed the traumatic events. When discussing why the doctor did not hear the woman's screams, the OB-GYN residents voiced that the doctor was focused on doing the C-section to save the woman and the infant.

Reading "The Yellow Wallpaper"

I tried the process again with "The Yellow Wallpaper" by Charlotte Perkins Gilman after finding Tucker's article about reading this story with medical students (2004). "The Yellow Wallpaper" is rich with issues for discussion. Postpartum psychotic depression, repression of women's intellectual interests and role outside the home as well as the ethics of the physician husband treating his wife offer a plethora of possibilities for discussion. Gilman's story is longer than "Indian Camp" and took the family medicine residents 25-30 minutes to read. This left only 30 minutes to have the discussion from various perspectives. Residents reported that they were not used to reading stories with such flowery language and found it less enjoyable than "Indian Camp". Most of our residents are currently male but the one female resident found it pleasurable reading. None of the family medicine residents were familiar with "The Resting Cure" that was prevalent in the early 1900's.

Final Comments

There are always a couple of residents who ask, "Why are we doing this?" "How will this help me run a code?" I only read medical journals, why do I have to read this?" The majority of the family medicine residents did not question the validity of this teaching process. The OB-GYN residents were initially very reserved not knowing what to expect but then became activated as the story unfolded. As the process evolved, the facilitators were less directive and the group took off. As in most groups, the group does the work! At the end of the hour, residents were making positive comments about what an enjoyable learning experience this was and that they would like to do it again but with stories that were more like "Indian Camp" than like "The Yellow Wallpaper".

During the past six years I have utilized "Indian Camp" three times with family medicine residents and once with OB-GYN residents. I used "The Yellow Wallpaper" once with family medicine residents and plan to use it with psychiatry and OB- GYN residents in the future. It will be interesting to see how the process evolves with different specialties and to learn which issues become the focus of the discussion.

References

Alexander M, Lenahan P, Pavlov A (Eds). Cindemeducation: A Comprehensive Guide to Using Film in Medical Education, Oxford: Radcliffe Publishing, 2005

Avitzur O. Rx for BlackBerry thumb, Consumer Reports, January 2009, p. 12

Bianchi A, Phillips JG. Psychological predictors of problem mobile phone use. Cyberpsychol Behav. 2005 Feb; 8(1): 39-51

Bisele M, How hunter-gatherers' stories "make sense": semantics and adaptation, Cultural Anthropology, Vol 1. No. 2, The Dialectic of Oral and Literary Hermeneutics (May 1986), pp. 157-170

Ekman P. Emotions Revealed: Recognizing Faces and Feelings to Improve Communication and Emotional Life, New York City: Henry Holt and Company, LLC, 2003

Menz RJ. "Texting" tendonitis. Med J. Aus. 2005, March 21, 182:6: 308

Tucker P, Crow S, Cuccio A, Schleifer R, Vannatta JB. Helping medical students understand postpartum psychosis through the prism of "The Yellow Wallpaper" by Charlotte Perkins Gilman, Academic Psychiatry 2004, 28: 247-250

Breast Milk As Medicine And Virus: Modern Maternity And HIV/AIDS

January 15, 2010 at 5:56 pm

John & Penny Hubley, Wellcome Images, London Breast feeding: health promotion . In this urban slum in India, a poster on mother and child health and breast feeding is being tested. Ideally, health education programms should start with trials in small groups before wider implementation.  Second half 20th century

Commentary by Bernice L. Hausman, Ph.D., Professor, Department of English; coordinator of the undergraduate minor in Medicine and Society, Virginia Tech.

Biologically speaking, breastfeeding has always been a health-promoting practice of motherhood. Within modernity, breastfeeding has become a consciously health-promoting activity through a complex historical development that has rendered all forms of eating and nutrition as analogs to a healthy lifestyle. To single out breastfeeding may seem to ignore the ways in which many other foods have become medicalized in the last half century. After all, eating has long been the focus of health advocates and lifestyle politics in the United States. Yet what is specific to the figuration of breast milk as medicine concerns, at least in part, the fact that breast milk is the only food produced in the human body for human consumption, and it is produced almost exclusively by female humans.

Breast Milk as Medicine

Breastfeeding's contribution to health is imagined through the representation of breast milk as medicine. This figuration appears prominently in guidebooks for new mothers. La Leche League's The Womanly Art of Breastfeeding contains a short section in its first chapter where the reader learns that breastfeeding provides not only the "best possible infant food," but that it aids in contracting the uterus after birth, helps the development of the infant's jaw and facial structure, "safeguard[s]" the baby against the development of food allergies, "inhibit[s] the growth of harmful bacteria and viruses," contributes to a higher IQ for the baby, protects the mother from breast cancer, ovarian cancer, urinary tract infections, and osteoporosis, and contributes toward the sex education of older children. (1) In another example from a global publication on breastfeeding and HIV, colostrum is defined often as "the infant's first vaccine." (2) In yet another example, this one from a local breastsfeeding coalition newsletter, a neonatologist writes, "The benefits of breastfeeding in terms of species specificity, balanced, changing nutrients and enzymes, host resistance factors, immunologic protection, allergy protection and psychosocial development, make breastmilk [sic] the most important and cost effective substance we have in medicine today." (3).

I believe that these claims concerning the biological benefits of breastfeeding are true, by the way. The point here is to examine the unfolding of a story about breast milk as medicinal, not to question the biological truth-claims of such a story. In the short section of The Womanly Art of Breastfeeding cited above, the new or expectant mother learns to think of her body as producing a substance with effects that are defined and measured in medical terms. Almost all breastfeeding advocacy in the United States works on this model—medical benefits and measures of breastfeeding's "natural superiority" couched in language also suggesting the central closeness that emerges in the mother-infant breastfeeding relationship.

Cultures of Breastfeeding/Breastfeeding in Culture

In general, breastfeeding operates within cultures as a behavior promoting the core values, beliefs, and practices of that culture. For example, in The Afterlife Is Where We Come From, anthropologist Alma Gottlieb demonstrates that West African Beng culture treats infants very differently than conventional U.S. families, understanding infantile behavior to be essentially unpredictable and without a knowable cause. Scheduled feeding and sleeping is an unknown value and thus not sought after, even though mothers are often separated from infants of 2 months of age when they return to work in the fields. While some maternal infant feeding practices, like feeding newborns and young infants water before nursing, are rationalized as healthful, Beng conceptions of health are themselves mediated primarily by spiritual belief rather than by medicine as an institutionalized form of knowledge about the body. (4)

In heavily medicalized contexts like the United States, the "nature of infants" is understood to be biologically determined; infants fuss because of a physical or physiological need. Scheduling feedings corresponds to a belief about "normal infants" as cohering to cultural values; "good babies" are those who eat at specific times and sleep in predictable, lengthy units (especially at night). (5) All of these factors are presented in advice books as healthful because they are understood to be biologically appropriate for growing infants, yet it is not hard to discern that medical ideas provide a justificatory rationale for culturally specific practices and perspectives on infant behavior.

In addition, a discourse of mother-infant closeness is grafted onto the medical narrative of biological causation, bolstered by pseudo-scientific ideas of "bonding." (6) The loving relation of mother to baby is founded on the transfer of a medically pure substance in a gift exchange. (7) This gift of breast milk is also a gift of medicine itself. Breast milk is not just a nutrient with medicinal effects, like an "anti-oxidant" or vitamin, something that helps avoid allergies and disease, but a pharmacological substance, a product associated with medical research and industrial production.

Yet what makes breast milk special is that it comes from women's bodies-it is figured as food and medicine made by women. It is also part of a cultural debate—longstanding and largely displaced from explicit social recognition—about whether mothers can really succeed at mothering. Cultural messages about pure milk and the implication that breast milk itself is medicinal are bound up with presumptions about good mothering and the embodied purity of good mothers. (8)

Scientific Motherhood

Scientific motherhood, defined initially by Rima Apple in Mothers and Medicine and developed in her later book Perfect Motherhood, is the notion that maternal practices are best subjected to the authority of medicine and the (presumably male) physician. (9, 10) In the context of scientific motherhood as an ideology, maternal knowledge and traditional practices do not hold the same authority as the scientifically derived understanding of doctors; thus, individual mothers are taught to rely on the advice of expert professionals. The best mothers are those whose practices promote growth and development that can be defined and measured by medical personnel.

Currently, in the United States, breastfeeding is a practice in service to the ideology of scientific motherhood, and, at least discursively, breast milk is the product that leads to the medically defined "healthy development" of babies. "Good mothers" are also narrative effects of these practices, figured through their selfless labor in relation to their infants' health, their disciplined relation to their own body projects, and their attentiveness to the purity of their own bodies. Scientific motherhood is a white ethnoracial and middle-class construct, although it serves as a model for all women's behavior and many different groups of women subscribe to its values. Scientific motherhood has also transformed the disciplinary experience of being a maternal body. If, in the early part of the last century, mothers were encouraged to stop feeding coffee to their babies because coffee stunted the growth of infants and led to digestive problems, now we see in pregnancy and infant care guide books advice to mothers to eliminate or diminish their own consumption of coffee and caffeinated beverages in order that the caffeine not affect their fetus or nursing infant.

Barbara Duden has discussed this kind of thinking as the figuration of the maternal body as an ecosystem, and she argues that its overall effect is to disembody women. (11) What this development alerts us to is a perception of the female body itself as a danger to fetuses and infants, for what mother can keep herself clean enough to avoid the transfer of some noxious agent? We are all the repositories of the chemicals that permeate our environment. In another historical shift, in the 1970s and 80s the body of the mother was posed against the bottle as the source of goodness figured against poison. If the image was striking—as the Nestle boycott meant it to be—it was effective. Now, however, the body of the mother is not clearly the good ending to the story of how to keep babies healthy and alive; it is instead implicated in the illness narratives of her infant. And there is no limit to the purity that can be demanded.

Breast Milk as Virus

The advent of HIV/AIDS has made salient the viral possibilities of breastfeeding. The opposition medicine/virus operates to enhance medicine's authority over mothers. In its articulations in affluent countries, it contributes to maternal anxiety and concern over breastfeeding. In poor countries, where the majority of HIV-positive mothers live, uncertainties about the meaning of breast milk are intertwined with bleak outcomes for many infants and children.

Biomedical research itself is not uniform in its understanding of mother-to-child HIV transmission rates and optimal feeding protocols. The World Health Organization (WHO) has developed guidelines for infant feeding in the case of maternal HIV infection that emphasize maternal informed choice. The AFASS criteria—which define whether replacement feeding is ACCEPTABLE, FEASIBLE, AFFORDABLE, SUSTAINABLE, and SAFE—are supposed to be evaluated in each instance. If these criteria cannot be met, mothers are counseled to breastfeed exclusively during the first months of an infant's life. Yet scholars suggest that myriad factors interfere with the model of rational decision making imagined in these guidelines. Indeed, sometimes even the simple understanding that a mother's milk contains HIV will be enough to convince a woman not to breastfeed, regardless of her circumstances (12, 13).

"Informed choice" situates the mother in the middle of a scientific and social controversy, and then asks that she make a decision responsive to her material and social circumstances and an abstract understanding of biomedical risk. HIV-positive mothers are figured as modernized individuals whose success at mothering is a blend of rationality, choice, and options. It is my view that these guidelines implicitly imagine the privileged mothers of the global north as their exemplary ideals, mothers for whom "choice" is understood (however improperly) as a relatively free endeavor and whose choices are supported by the social, cultural, and medical infrastructure of their communities.

Choice, Breastfeeding, and Modern Motherhood

It is not that I would want to deny choice and the agency it relies on to (mostly impoverished) HIV-positive women. Rather, I'd like to suggest that we need to reorient the utopian views of good mothering that frame and constrain our perceptions of what mothers do and the choices they make. Mothers need to be understood as neither the repositories of pure nutrition nor the potentially infectious contaminators of the young, but as materially embedded subjects whose bodies are of this world as everyone's are. It is probably impossible to return to breastfeeding a set of meanings untouched by medicalization, but it is possible to construe its significance as not completely captured by medical narratives and understanding.

Medical narratives that frame good mothering as the result of rational choices made on the basis of biological imperatives ignore the social and cultural contexts of practice that exist for all mothers. The medical framing of breastfeeding has obscured for many of us the important cultural functions that nursing enacts, and thus makes it difficult to see how HIV-positive mothers are affected by multiple social determinants. It is not just that the affluence of the global north makes understanding the practices of impoverished mothers of the global south difficult; it is that we no longer believe that breastfeeding has any other meaning than to create (biomedically) better babies.

It is my view that the biomedical and public health struggles over how to advise HIV-positive mothers point us toward larger issues concerning the social meaning of mother's bodies and mother's practices. These are, in Anthony Giddens's words, some "consequences of modernity." (14) To offer women more than a strait-jacket of choice, we might begin with a revision of the stories told about breastfeeding, especially those that suture its meanings to medicine and normative expectations of maternity.

References
1. La Leche League International. The Womanly Art of Breastfeeding. 6th ed. Schaumburg, Ill.: La Leche League International, 1997, 6-7.
2. Linkages. Infant Feeding Options in the Context of HIV. Washington, DC: Academy for Educational Development, April 2004. Web. www.linkagesproject.org (accessed October 15, 2004).
3. Wight, Nancy E. "Breastfeeding in High Risk Populations: The Mom with Hepatitis." Breastfeeding Update (San Diego County Breastfeeding Coalition) 1, no. 4 (December 2001): 1, 4. Web. www.breastfeeding.org/newsletter/v1i4 (accessed March 8, 2004). Emphasis added.
4. Gottlieb, Alma. The Afterlife is Where We Come From: The Culture of Infancy in West Africa. Chicago: University of Chicago Press, 2004.
5. Millard, Ann V. "The Place of the Clock in Pediatric Advice: Rationales, Cultural Themes, and Impediments to Breastfeeding." Social Science and Medicine 31, no. 2 (1990): 211-21.
6. Eyer, Diane E. Mother-Infant Bonding: A Science Fiction. New Haven: Yale University Press, 1993.
7. Golden, Janet. A Social History of Wet Nursing in America: From Breast to Bottle. Cambridge History of Medicine. Cambridge, U.K.: Cambridge University Press, 1996.
8. Meyer, Dagmar Estermann, and Dora Lucia de Oliveira. "Breastfeeding Policies and the Production of Motherhood: A Historical-Cultural Approach." Nursing Inquiry 10, no. 1 (2003): 11-18.
9. Apple, Rima D. Mothers and Medicine: A Social History of Infant Feeding, 1890-1950. Wisconsin Publications in the History of Science and Medicine, no. 7. Madison: University of Wisconsin Press, 1987.
10. Apple, Rima D. Perfect Motherhood: Science and Childrearing in America. New Brunswick, NJ: Rutgers University Press, 2006.
11. Duden, Barbara. Disembodying Women: Perspectives on Pregnancy and the Unborn. Translated by Lee Hoinacki. Cambridge, MA: Harvard University Press, 1993.
12. Blystad, Astrid, and Karen Marie Moland. "Technologies of Hope? Motherhood, HIV, and Infant Feeding in Eastern Africa." Anthropology and Medicine 16.2 (August 2009): 105-18.
13. Moland, Karen Marie, and Astrid Blystad. "Counting on Mother's Love: The Global Politics of Prevention of Mother-to-Child Transmission of HIV in Eastern Africa." In Anthropology and Public Health: Bridging Differences in Culture and Society, Second Edition, edited by Robert A. Hahn and Marcia C. Inhorn, 447-79. New York: Oxford University Press, 2009.
14. Giddens, Anthony. The Consequences of Modernity. Stanford, CA: Stanford University Press, 1990.

Rescuing Sympathy

November 30, 2009 at 2:24 pm

Female doctor talks to female patient

Commentary by Jack Coulehan, M.D. M.P.H., Professor Emeritus of Preventive Medicine and Fellow, Center for Medical Humanities and Bioethics, Stony Brook University, New York

Many authors who write about empathy in medicine are careful to draw a bright line between sympathy and empathy. For example, Hojat in his excellent survey of research on Empathy in Patient Care, considers the two concepts as almost dichotomous, albeit with a small area of overlap. (1) In this categorization, empathy is a cognitive attribute that allows us to understand the selfhood of another person, or, as Hojat puts it, "the kind and quality of the patient's experiences." (1, p. 12) Alternatively, sympathy is an affective or emotional attribute that plays a somewhat ambiguous, if not detrimental, role in medical practice. The bottom line message is that experiencing too much sympathy for patients distorts the clinician's medical judgment, thus harming the patient; and at the same time causes the clinician to "absorb" too much suffering, thus leading to professional burn-out. Interestingly, these authors seem unconcerned about the question of too little sympathy. Presumably, they agree that clinicians ought to care for their patients, i.e. feel-for or have compassion. Therefore, they must believe that a modest amount of sympathy is essential for patient care, but they never discuss how to develop or maintain sympathy. Their main concern is that it not be confused with empathy.

Empathy

Empathy is a hard nut to crack because it challenges the conventional medical opinion that thinking is thinking and feeling is feeling and never the twain shall meet. Empathy is a process by which we try to understand other people's experience: how they feel, where they are coming from. To the extent that we accomplish this, we are considered empathic and should score highly on a reliable test of this quality. Thus, empathy is a cognitive process, but the content (the known) includes emotions. To "know" emotions we have to feel them. Jodi Halpern uses the term resonance emotions to describe these feelings generated in the clinician as she practices empathy. (2) She writes, "The special professional skill of clinical empathy is distinguished by the use of this subjective, experiential input for specific, cognitive aims. Empathy has as its goal imagining how it feels to be in another person’s situation." (3)

I speak of "practicing," rather than "having," empathy because I want to focus on the professional skill component, rather than the natural endowment (i.e. more or less hardwired) component. In Howard Spiro's famous essay "What is empathy and can it be taught?" he answers the second question with a qualified "yes." He writes that "a better question might be, 'Can we recover the empathy we once had?'" (4) Arguing that the process of medical education tends to diminish our openness to others' feelings and experience, Spiro believes that enhancing clinical empathy is more of a restoration project, rather than a pedagogical one. Perhaps he overstates the case, but it is clear that medical education tends to narrowly focus students' attention on patients-as-objects, thus down-regulating their receptors for experiencing patients-as-subjects. It can be argued that concepts like detachment, detached concern, and clinical distance describe an unfortunate situation that needs to be remedied, rather than a professional ideal.

Sympathy

What does this have to do with sympathy? I take sympathy to mean an emotional state in which we desire to "feel another person's emotions better" (Hojat's language, 1, p. 11). In clinical medicine this translates to "connect with" another person's suffering. In other words, to have sympathy for a patient is to have genuine care or compassion for that patient. Perhaps it is useful to warn students against submerging themselves in excessive sympathy, but I doubt it. After many years of observing medical students, residents, and senior physicians in practice, I don't believe that over-identification with patients is much of a problem. Some doctors seem not to connect with their patients as persons. In other words, patients don't engage much of a sympathetic response. I suspect these non-sympathetic doctors would also score poorly if they were subjected to an accurate test of clinical empathy. another group of doctors seem genuinely to care for their patients. They have a great deal of sympathy for patients. However, these clinicians appear to have the emotional resilience that allows them to experience sympathetic feelings, but also maintain a clinical perspective. I suspect these sympathizers would also score highly if they were subjected to an accurate test of clinical empathy.

Empathy and Sympathy

This brings me back to the original distinction between empathy and sympathy. I agree that a distinction exists, but I submit that the relationship is more complicated than most writers portray it. In many ways sympathy and empathy parallel one another: sympathetic clinicians tend to work harder at being empathic; unsympathetic doctors tend not to devote much effort to empathy. At the same time, empathy is clearly a cognitive process by which we may approximate an understanding of another's situation and feelings, while sympathy is an emotional state of affirming the other person while experiencing something of his or her suffering.

Concluding Thoughts

Let me conclude with the following observations:
1. Empathy precedes sympathy. I can't sympathize with a person unless I have some understanding of how he or she feels.
2. Sympathy feeds empathy. My feeling-for a person's suffering makes me more likely to engage that person empathically.
3. Clinicians are more likely to be compromised by having insufficient sympathy than by having excessive sympathy.
4. My use of the term "sympathy" may be somewhat at variance with the way Hojat and others define it. However, I believe that, insofar as the versions are different, my version corresponds better with common usage, while their version, in which sympathy is considered egoistic as opposed to altruistic (1), is somewhat confusing and perhaps a straw man.

References
1. Hojat M. Empathy in Patient Care. New York, Springer, 2009, pp. 10-15
2. Halpern J. Empathy: Using resonance emotions in the service of curiosity. In: Spiro H et al (Eds.) Empathy and the Practice of Medicine, New Haven, Yale University Press, 1992, pp. 160-73.
3. Halpern J. What is clinical empathy? J Gen Intern Med. 2003; 18: 670-674
4. Spiro H. What is empathy and can it be taught? In: Spiro H et al (Eds.) Empathy and the Practice of Medicine, New Haven, Yale University Press, 1992

 

Disease Causality

October 12, 2009 at 9:55 am

Obese man eating fatty and sugary foods. Photograph, Anthea Sieveking, Wellcome Images

Commentary by Daniel Goldberg, J.D., Ph.D. Health Policy & Ethics Fellow, Chronic Disease Prevention & Control Research Center, Department of Medicine, Baylor College of Medicine; Research Faculty, Initiative on Neuroscience & Law, Department of Neuroscience, Baylor College of Medicine

There is a legal doctrine known as "attractive nuisance." The basic idea of the concept, grounded in the law of torts, is that an owner or occupier of a premises can be held liable for negligence if they are responsible for a dangerous condition which is reasonably likely to attract vulnerable persons, such as children. Sometimes the medical humanities are for me akin to an attractive nuisance inasmuch as I tend to be easily distractible and scatter-brained, and thus can wallow in to deep pools before I realize I am well out of my "safe" zone.

Of course, practicing the medical humanities is not a nuisance at all; it is a privilege to be practicing, instead of merely rhapsodizing about the merits of, an interdisciplinary approach to health, illness, and medicine in society. But the privilege comes with significant danger as well, and I have of late become more impressed with the need to focus in on a few key areas which I hope to make part of my comfort zone. One of these areas of interest is disease causality.

Causation

Causation is one of those fecund topics whose enormous importance seems to surpass disciplines. A favored subject of antiquity, it remained central to Thomas Aquinas, Maimonides, and many of the other medieval scholars, to the early modern greats like David Hume and Immanuel Kant, and remains a critical subject in contemporary philosophy of science. Kant, whose epistemology is in my view often shamefully relegated to the background of his moral philosophy, was convinced that causation is a category of understanding, such that we cannot make sense of the phenomenal world without the concept.

But not only philosophers treat of the importance of causation, especially in context of medicine and illness. Medical anthropologists, for example, have long since pointed out that comprehending how a given community understands disease causality provides critical insight into the meaning of illness, suffering, life, and death. Anne Fadiman's well-used book, The Spirit Catches You and You Fall Down [1], is a nice instrument for teaching this point, as it seems inescapable that greater understanding (if not acceptance) of the Lee family's beliefs about Lia's illness experience would have greatly improved the family's medical experience.

As a self-identifying public health ethicist, my particular focus right now in thinking about disease causality is in the context of stigma. The history of stigma in context of illness can, to my mind, be traced back virtually as far as one wishes in Western civilization. (I believe it is reasonably prevalent in non-Western cultures as well, though I admit to a shameful level of ignorance on the specifics here). The reasons why stigma is so common in illness scenarios are multi-faceted, complex, and in my view have powerful explanatory capacity in conceptualizing health, illness, and disability. Fortunately for the able readers, as I have some work in review on the subject, I shall not be discussing it here (though some general thoughts on the subject are available on Medical Humanities Blog.

Disease Causality and Stigma: The Case of Fatness

What I want to suggest here are the connections between a particular notion of disease causality and stigma. One of the most obvious examples is the relationship between fatness and illness. As Gard and Wright [2] painstakingly documented in their fabulous 2005 book, the connections between fatness and disease are typically taken to be virtually certain among both lay and professional communities. And what are the consequences? That is, what results if we assert that type II diabetes, coronary artery disease, and cardiovascular disease, among others, are caused by fatness?

Of course, responding to the question of "what causes diabetes" by answering "fatness" is really a set of additional questions masquerading as an answer. Many of these questions turn on the differences between causes and risk factors, but to approach the issue of stigma, one must ask what causes fatness? (Naturally, to even speak of singular causes of intricate, nonlinear systems like disease in populations is absurdly oversimplified; one of the problems with causal attributions of illness in both lay and professional discourse is our general reduction of these complex systems to single, discrete variables. This is of course a hallmark of the Western scientific method, and the history of how we came to do so is, I think, quite important. But that is another post altogether.)

Life-style Model of Disease

In any case, what causes fatness? The usual answer turns on some fairly innocuous-sounding mishmash of genetics and environment, but the so-called model of disease causality here is often referred to as the "lifestyle" model. And lifestyle-type thinking is, particularly in American culture, deeply ingrained with notions of choice. We choose whether to pursue this lifestyle or that one; and so, in a very real sense, we choose whether to be fat. If fatness causes illness, it follows that we choose whether to be sick (with diabetes, coronary artery disease, etc.). This is in part why breathless reports of genetic linkages with fatness incite so much controversy - one of the perceived implications of such linkages is that individuals are not responsible for their fatness.

Of course, as I have noted on Medical Humanities Blog (see "On the Genetics of Jewishness"" and "On Genes & Diabetes Disparities", our discourses of genetic causation are problematic in a great number of ways, not least of which is the notion that "genes" actually cause anything at all in a linear sense. Genes do have causal effects, of course, but those causal effects are only produced through a complex system in which social, economic, cultural, and environmental factors profoundly shape expression. As Jeremy Freese has noted, the idea that the causality of an illness can be divvied up into x% - genes and 1-x% - environment is deeply mistaken [3]. Thus mere genetic linkages themselves are, from a causal perspective, not very interesting separate and apart from the inordinately complex systems through which they express (or do not).

Critique

One of the most compelling criticisms of the lifestyle model of disease is not that it is false; but rather, it is incomplete inasmuch as it pays no attention to the ways in which social and economic conditions substantially determine one's lifestyle choices. Even if we were to grant the exceedingly dubious proposition that fatness causes diabetes, drilling the causation down to individual lifestyle choices ignores, in my and many others' views, the robust evidence that lifestyles are primarily the product of social and economic conditions (the social determinants of health).

And of course, our model of disease causality is frequently embodied in how we regulate behaviors thought to cause illness. If one sees society as what Robert Jay Lifton termed a "biocracy" [4] as prevailed in the early 20th century in both Europe and the U.S., then the solution to the inherited "degenerate" behavior that produced diseases like insanity, mental retardation, and syphilis was to enact laws which precluded such inheritance. Alternatively, one could also support laws that precluded the "amalgamation" of "racial stocks" in which such degeneracy proliferated.

Similarly, if the cause of diabetes and CAD is perceived to be fatness, and the causes of fatness are unhealthy lifestyles, the perceived public health solution is to regulate such lifestyles, by, for example, strictly regulating the food available in school cafeterias, or requiring restaurants to print calorie information on their menus and web sites. In contrast, if the cause of fatness is perceived to be social and economic conditions, policy solutions would seem to fall much closer to ameliorating the conditions which seem to promote unhealthy lifestyles. (I hasten to remind readers that I am quite skeptical of the causal links between fatness and illness, but I assumed the validity of the attribution to take the point further).

In any case, disease causality is an important, and, in my view, understudied concept in the medical humanities, one that ties in quite deeply to notions of stigma, disability, and moral culpability for illness.

References
1. Anne Fadiman. The Spirit Catches You and You Fall Down (New York: Farrar, Straus & Giroux, 1997).
2. Michael Gard and Jan Wright. The Obesity Epidemic: Science, Morality, and Ideology (New York: Routledge, 2005).
3. Jeremy Freese. "The Analysis of Variance and the Social Complexities of Genetic Causation," International Journal of Epidemiology 35, no. 3 (2004): 534-36.
4. Robert Jay Lifton. The Nazi Doctors: Medical Killing and the Psychology of Genocide (New York: Basic Books, 2000).

 

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.