Carolyn Moxley Rouse '87: Why I Believe in Death Panels and Other Imperfect Roads to Health Care Justice
Carolyn Moxley Rouse '87: Why I Believe in Death Panels and Other Imperfect Roads to Health Care Justice
Carolyn Moxley Rouse '87, a medical anthropologist and faculty associate in the Center for African American Studies at Princeton University, delves into the complicated ethical border between more medicine as a solution for ameliorating racial health care disparities and evidence-based approaches (popularly known as "death panels") that allocate resources according to particular types of evidence. She explores these issues through examination of the experience of an African American family she followed in the 1990s that was living in the projects in South Central, Los Angeles.
Rouse specializes in medical anthropology, visual anthropology, resistance, critical race theory and consciousness. She has done extensive fieldwork with African American converts to Sunni Islam, as well as with children and adolescents who have long term illnesses and/or disabilities.
Rouse is the author of Engaged Surrender: African American Women and Islam (2004) and Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease (2009). She is finishing a co-written book entitled Televised Redemption: The Media Production of Black Jews, Christians, and Muslims. Her current book project, Development Hubris: Adventures Trying to Save the World, examines discourses of charity and development and is tied to her project building a school in a fishing village in Ghana. In addition to being an anthropologist, Rouse is also a filmmaker. She has produced, directed, and/or edited a number of documentaries including Chicks in White Satin (1994), a film about a lesbian wedding; and Purification to Prozac: Treating Mental Illness in Bali (1998).
Rouse's talk was co-sponsored by co-sponsored by the Economics Department, Political Science Department, Black Studies Program, Lang Center for Civic and Social Responsibility, Sociology & Anthropology Department, and the Alumni Office.
Speaker 1: Welcome. We're going to get started. I wanted to start out by introducing our speaker, but I first want to thank all of your for coming today. It's really great to see so many of you here for a very important topic. It's my great pleasure to introduce to you, and to welcome back, our speaker, Dr. Carolyn Moxley Rouse. She's coming to us from Princeton University, where she's a professor of anthropology, and faculty associate in the Center for African American Studies. Dr. Rouse is making a homecoming of sorts, as she's an alumna of Swarthmore, and she graduated here in the class of 1987. In her own intellectual autobiography, she locates her first interest in anthropology to have begun during her junior year here at Swarthmore. She wrote, quote, "I was studying wildlife biology in Kenya. I found I was much less interested in the kidney efficiency of indigenous ungulates than in observing services at a pentacostal church in Nairobi." This experience set her on a track that led her through documentary film directing and producing, to a master's degree in visual anthropology, and on to get her PhD in anthropology from the University of Southern California.
As a cultural anthropologist, Dr. Rouse's research has focused on the question of why people accept systems of inequality. She describes this problematic in the following way. Quote, "When people learn about social inequality, extant and other cultures, they often react with horror. Examples include the caste system, burkas, female circumcision, and different forms of servitude. While we find it easy to state what is wrong with social systems out there, beyond our cultural borders, people generally find it difficult to recognize power and mystification in their own backyards." Dr. Rouse's work on race and inequality examines the discourses and the practices that are used to rationalize forms of suffering, as well as to negate them. Her field work focuses on four domains: Religion, medicine, education, and development. In the context of biomedicine, the domain on which her talk today will be focused, she examines how scientific authority and operationalized treatment protocols are used to delegitimate suffering and to redirect health care resources.
The list of Dr. Rouse's achievements is impressive and very long, too long to go into detail here, but I want to give you a sense of the range and the depth of her work, in both filmmaking and in written scholarship. Dr. Rouse has produced and directed and-or edited more than seven documentaries, including Chicks in White Satin, a film about a lesbian wedding, Purification to Prozac: Treating Mental Illness in Bali, which follows a Balinese psychiatrist who combines western and traditional medicine to address why outcomes for certain mental illnesses are better in developing countries than in highly industrialized societies. And most recently, she served as producer and editor for Hip Hop Is: I Am Not Dead, a video shot and directed by adolescents and former convicts from poor neighborhoods in Trenton, New Jersey, who describe the ways in which hip hop transformed their lives.
In her written work, Dr. Rouse has published more than 14 articles and book chapters, and I can't resist sharing just a few of her titles to illustrate some of the range and the depth of her work. Here's a few of them. One: If She's a Vegetable, We'll Be Her Garden: Embodiment, Transcendence, and Citations of Competing Metaphors in the Case of a Dying Child. Paradigms and Politics: Shaping Health Care Access for Sickle Cell Patients Through the Discursive Regimes of Biomedicine, and a forthcoming publication whose title I think is marvelous: Health Care is Not a Salad Bar: Consumerist Models of Health Care and Their Discontents. Dr. Rouse has offered three full-length monographs including Engaged Surrender: African American Women and Islam, Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease, which I've incorporated into my course Culture, Health, and Illness, and I'm very happy to see many of you here today. Her work on suffering has led to her most recent interest in development discourses about suffering and rescue. Her latest research involves building a high school in Ghana in order to study what is right and wrong with development discourses and practices. The title for this manuscript, which is currently under review at Princeton University Press, is Development Hubris: Adventures Trying to Save the World.
I think it's safe to say that we're all very privileged to have Dr. Rouse with us today. Her scholarship is a shining example of the importance and the value of anthropological approaches to understanding contemporary and pressing social problems, taking richly contextualized and nuanced views that reveal the complexities of what often remain unquestioned or taken for granted aspects of our worlds. She's certainly an inspiration to me, and hopefully will be to many of you as well. Both her past and her ongoing areas of scholarship beautifully enact and embody some of Swathmore's most treasured principles. Without further ado, please join me in welcoming back Dr. Carolyn Moxley Rouse.
Dr. Rouse: That has to be the sweetest introduction I've ever received, and last night I heard Toni Morrison read from her book Home, and I feel like I'm at home, and that was really lovely. You know now that this isn't just a talk for me, because sitting over here is my very first anthropology professor, Joy Charlton. I took a class with her and Jane Key my very first semester on feminist theory, and I remember the moment when I realized this was the discipline for me. You asked, "Can we live without stereotypes?" And I know I answered the question quickly, but it was like time stood still, and I remember my thought process. "I'm black. They think I should answer that, 'No, we can live without stereotypes.' But what are stereotypes? They're categories, and how can we live without categories as humans, because categories are language, and we developed language because we have categories." And so I knew the answer within a couple seconds, which was, "No, we can't live without stereotypes." For me, that opened up a whole world in terms of thinking about, "Well then, how do these stereotypes form?" It's about what the stereotypes mean.
They opened my world to challenging what Bourdieu calls "doxa," what Geertz calls "common senseness," about the world we live in, and by studying other cultures, you expand your notions of the moral universe. You can see how so many people live in so many different ways, but the discipline was so powerful to me that they were the only books I ever sold in my four years, because I was on my way to being a doctor. I have to tell you that it wasn't until six years ago that I purchased, re-purchased, "Women, Culture, and Society," when Louise Lamphere was teaching, a visiting professor in my department, so thank you. For the rest of you who aren't anthropologists, let me just say you'll be pleased to know that I've cited more anthropologists in the last 60 seconds than I will cite throughout the entire rest of my talk. There are a number of us anthropologists who went to have conversations that are cross-disciplinary, which means we don't want to alienate people with a lot of jargon and a lot of references to obscure theorists. Don't be worried.
Part one. In 2009, when President Obama reached out to the republicans to try to reform the health care system, he was slapped back by former vice presidential hopeful Sarah Palin. Using a clever turn of phrase, Palin warned Americans that Obama's ultimate goal was to ration care through the use of death panels. Without ever articulating exactly who would be on these panels or exactly what their legislative mandate would be, Senator Chuck Grassley of Iowa gave form to the fantasy when he said, "We should not have a government program that determines if you're going to pull the plug on Grandma." There, of course, was never a provision in the Affordable Care Act for death panels, but the claim captured a bit of truth: Americans overuse health care. Many drugs, tests, and treatments demanded by patients and ordered by physicians actually have deleterious effects on health care outcomes and quality. If we have to ration health care in order to maintain the economic viability of Medicare and Medicaid, then we need to stop throwing resources towards treatment that are akin to lobotomies and bloodletting.
Recognizing that the majority of health care expenses are spent on the last year of life, President Obama, along with a number of health care economists and ethicists, argued that it was necessary to rethink end of life care, given that it consumes 30% of Medicare costs. They proposed that physicians be compensated for patient-directed end of life care discussions, and in these discussions, patients would be encouraged to create advanced directives that spell out when medical treatment should be stopped, among other things. Also implied, but never discussed in the media, was that best practices toward end of life care would continue to be developed through consensus statements formulated by medical experts. Death panels, if you will. Never mentioned in the media is that professional panels of all sorts determine everything from what blood sugar level categorizes someone as diabetic, to what blood pressure or cholesterol readings determine when drug therapies should be prescribed.
Even though the turn toward consumerist models of health care have gained credibility in the past few decades, remember, there was a time when it was unseemly for doctors in hospitals to advertise, and it was illegal to advertise drug medication. Even with this consumerist turn, the medical profession remains a profession only open to trained and licensed practitioners who we trust use their expert knowledge to treat us, not because we demand it, but because they know what they're doing. This distinction was captured beautifully at a recent op-ed entitled "Hospitals Are Not Hotels." In the piece, oncology nurse Theresa Brown notes that patient satisfaction audit measures miss that medical professionals have to hurt people in order to heal them. In the case of death panels, formulating best practices around treating end-stage disease gives physicians the power to say "no" to a patient's demand for futile treatments, and to not worry that an unfavorable likeability rating on a patient satisfaction survey will end in a loss of their job or a lawsuit.
Now, I'm speaking largely to a group of liberals, I'm sure. That means that the fact that I disagree with Sarah Palin is like, it doesn't require much explanation, right? Such a disagreement belongs in the category of common sense. I should just end my talk and we can take questions. Okay, any questions? But actually, with respect to social justice and health care, support for professional panels to determine evidence-based approaches to treatment, or death panels, is far from common sense. With respect to racial health care disparities, the question is, "How do we simultaneously try to expand health care access to African Americans, specifically while simultaneously trying to limit the overuse of services generally?" The history of what Harriet Washington calls "medical apartheid" is compelling. African Americans have disproportionately been used as test subjects without their consent, for the most lethal and risky medical experimentation. Historically, blacks were denied quality care in segregated hospitals, and denied access to the medical care for reasons ranging from institutional racism to adversive racism in the clinic.
African American social history has been marked by structural violence, and this is reflected in the differential life expectancy of white Americans and black Americans. The gap has pretty much remained the same. It's sort of a band of 7.3 years to 4.5 year differentials, and there is, if this is the case, argument to be made to reject death panels, or more limits placed on patient care and choice, because then the history of racial health care exclusions mean that, you know, these abuses matter, and maybe we shouldn't be limiting care, because we're not sure why we limit care. Given this history, when I started researching health care disparities in the hospital in the 1990s, I anticipated that I was just going to go in, and I was going to find the perpetrators of all this racism, and then I was going to locate the victims, and I was going to put these things together, and voila, I would have an answer. Yeah. You see the problem there, right? It soon became clear that doctors were not overtly racist, and that some of the poorest African Americans were receiving some of the most advanced medical care through state insurance and through Medicaid.
You know, at the time, we thought that insurance was sort of like the key to the kingdom, so to speak, and so once we solved the insurance problem, then racial health care disparities would be eliminated. But we were finding that access alone wasn't necessarily the issue. Something else was at work. My research began in the late 1990s, when I spent three years following 14 African American families, and I would go to them, to church and home, and see home health care aides, visit with them in the clinic, and they were patients who were receiving long-term occupational physical therapy, meaning they usually had complex illnesses. Everything from brachial plexus to cancer, brain cancer. In the early aughts, I started narrowing my research to sickle cell alone for reasons having to do with the complexity of trying to understand racial health care disparities in the contexts of different diseases, and so then I started attending national, international meetings around sickle cell, interviewing advocates, patients, medical professionals, et cetera.
In the '90s, one of the families I followed I absolutely came to adore. Alicia had two boys when she met Donnell in the projects of South Central Los Angeles. They were both addicted to drugs, and Alicia was the first to admit she was a terrible mom. She neglected the kids, especially during their drug binges that would last days. At one point, they realized they could not continue, and so they got down on their knees and they prayed, and they were able to quit cold turkey. Months after that, Alicia got pregnant with twins, and one was born who's typical, and the other one was born with congenital abnormalities, including spina bifida. They gave their child a combination of their names, Donlicia.
Donlicia was quickly whisked away to the neonatal intensive care unit, where she stayed for nine months. Despite her fragile condition, the hospital released Donlicia to her parents because Alicia and Donnell impressed everyone. Donnell was illiterate, and yet his facility with the medical technology keeping Donlicia alive was stunning. In addition to their fearlessness with suctioning her trach, feeding her through the tube in her stomach, and maintaining the open wound in her spine, there was the love. Alicia and Donnell considered their daughter to be a blessing from God, and they tied their own redemption to how well they cared for her. At every clinic visit, Donnell and Alicia lifted the spirits of the medical professionals they worked with. They suffused every encounter with love and passion, not only for their child, but for the people who were tasked to care for her.
But six short months after leaving the NICU, Donlicia went for a checkup, and while waiting to see the doctor, she stopped breathing. After the doctors worked for over 20 minutes to revive her, Donlicia was alive, but her consciousness was indeterminate. Despite their daughter's tortured young life, Donnell and Alicia continued to fight for more treatments, and continued to try to inspire similar passion in the professionals who expressed doubt. In clinical encounters, physicians would mirror the couple's hopefulness, but in private interviews with me, they would say that God has tried to take Donlicia many times. Despite the private recognition that the treatments were futile, the hospital thought that withdrawing care from a poor, African American baby was not good public relations, and I have been following them since she was released from the NICU, and I played a significant factor in that decision as well. We think we're just flies on the wall, but we're not.
The hospital persisted, even after auxiliary services stopped. The couple was no longer allowed to call the ambulance. They were instructed only to call home health care. Once when Alicia crashed at 5:00 in the morning, Donnell gave her CPR and called home health care. The woman arrived two hours later and did nothing except counsel Donnell to stop. The parents refused, and instead packed Donlicia into the car while performing CPR, and drove her to the hospital. Donlicia lived for another 10 months.
A few months after her death, my husband and I gave Alicia and Donnell one of our cars as we began our journey east. I called them two months later, surprised that I hadn't heard from them. They were avoiding me, they said. Alicia had been receiving TNIFs since President Clinton signed welfare reform. She was actually quite happy about this, because they tested her and she tested high. "I never knew I was smart," she said. TNIF required that she receive training at a center miles from her house. In order to get to the training, Alicia would use the car. But first, she needed a license. Learning to drive a stick took a bit of time, and Donnell was willing to learn, except Donnell was still devastated by Donlicia's death, and he would often disappear for days, sometimes dulling his pain with alcohol.
No longer able to count on Donnell, Alicia went out for a practice drive before her test. Given the types of police surveillance in South Central, she was pulled over. After they discovered that she only had a permit and was driving alone, they impounded the car. For the first two days, the fee required to release the car was $100. After a week, $800. It might as well have been $10,000. They lived hand to mouth. They were never going to be able to pay any of it. Unfortunately, she lost the car about the same time that there was a bus strike. This meant that she was not able to get to her TNIF job training, and things just spiraled down from there.
Years later, I called them. Donnell became sober once again, and they were living out in a desert community. An extended family member robbed them at gunpoint in their apartment in South Central, and they had had enough. The desert was cheaper, and they could live off Darnell's disability and income from odd jobs under the table. While over $2 million was spent on caring for Donlicia, services for Donnell and Alicia, like education, jobs, and a safe environment, were all but non-existent. I'm sure you all saw the irony in that. But one can not argue that the poor should be required to choose between health care and quality of life. One could even argue that Donlicia's health care employed a lot of people, from health care workers, to businesses that supply medical supplies. In other words, the story of Donlicia does not contain all the proof necessary to argue for death panels. In addition, our assessment that health care services were overused is made largely in hindsight.
Any pediatrician will tell you that it's very difficult to give up on an infant, because unlike adult bodies, they are able to recover in ways that we can't. But there were medical professionals who did consider Donlicia's treatment to be futile. They were not, however, permitted by the institution from taking action, and that's important. This takes me to the second part of my argument, which has to do with physician discretion in the clinic, or the decisions made by physicians that fit within the realm of accepted medical practice, but which can have profound health consequences on patients.
The institution's unwillingness to refuse care for Donlicia has to do with their need to standardize care across all racial and ethnic groups. In order to understand the rationale of the hospital, we must return to the 1970s and 1980s. In Mary-Jo DelVecchio Good's book, American Medicine: The Quest for Competence, Good describes the emergence of maternal health care oversight as part of the second wave of medical professionalization. The first, of course, was Abe Flexner's 1910 Report on Medical Education in the United States. In the 1970s, a new treatment ethic emerged in which physicians were encouraged to practice medicine based on nationally agreed upon treatment standards. It no longer was acceptable for doctors to decide on their own what constitutes best practices. In addition, there were cooperative studies being done by the NIH, again, standardizing institutional approach to care.
The final blow to medical paternalism came in 1984, with the adoption of the Baby Doe law. The amendment was based on a number of cases in which children with birth defects were denied standard surgeries necessary to live. After the law, to deny health care to children with birth defects was considered child abuse, and a prosecutable offense. In the case of Donlicia and Children's Hospital West, they could not afford to let their feelings or experiences shape their treatment choices. Physician discretion no longer was an acceptable defense. Then in the 1990s, the conversation about racial health care disparities took on new heights. We have President Clinton in 1997 apologizing to the surviving male subjects of the Tuskegee experiments, and then a year later, he and David Satcher announced the goal to end racial and ethnic health disparities by 2010.
If we were to reach such a goal, what sorts of limits would have to be placed on physician discretion in the clinic, such that patients received identical forms of care? And what would standard care look like? It's one thing to treat trauma and acute illnesses similarly, but what about chronic illnesses that have layers of complexity that require health versus treatment trade-offs that aren't objective by any measure? We want to empower doctors such that they are not simply tools, you know? That we want them to give them the creativity to be able to use the knowledge that they have from the clinic, because there's a lot of valuable clinical information that they gain over the years, even if it's not evidence-based in terms of statistical evidence. But that doesn't mean that that's wrong, that's a wrong treatment. Time and time again in our study, physician discretion led to unequal treatment.
For instance, there was one girl in our study who the mother repeatedly returned to this hospital ER for eight straight months, and she would leave with a social worker's number, and a little pamphlet on how to properly feed your child, because the child was going in with headaches and was throwing up. Finally, the mother was fed up. Nine months into this ordeal, she goes to Children's Hospital West, she sits in in the waiting room, and they say, "Sorry. You can't see the doctor. We'll give you an appointment in six weeks." She says, "Okay. I'll sit here for six weeks." They brought a neurologist down. Within 20 seconds, he diagnosed a brain tumor, and then she died two years later, and the mother committed suicide two years after that.
This woman, she's African American, so when she went into the ER, she was read as dysfunctional. She was read as unable to take care of her child as opposed to, "This child is truly sick." This is the kind of discretion in the clinic that is unnerving for African Americans, who are afraid that the discretion is leading to unequal treatment. Discretion in the clinic is also why African Americans are far less likely to receive organ transplants. Doctors view African American patients as non-compliant, and therefore they consider an organ transfer into a black patient wasteful. Liver transplant surgeons David Axelrod and Elizabeth Pomfrey wrote in a 2008 JAMA article how by changing their liver treatment transplant protocol, they almost eliminated racial disparities, because they recognized that [inaudible 00:28:07] has the number of days you're on the waiting list as one of the factors in terms of where you are on that list, but it turns out that most doctors, white or black, are less likely to put their black patients on the list as their white patients. What happens is, white patients are on the list a lot longer, which privileges them. Simply by eliminating that, they actually got rid of a lot of the racial health care disparities.
An expert panel developed an operationalized protocol that limited physician discretion and produced greater health equality, which means parts one and two leave us with two conclusions. One, that health care is overused, and those resources could go toward improving the quality of life of those most impacted by health disparities, and part two shows us that the blunt instrument of rigid protocols can work. Part three complicates this a bit. Part three deals with the question of, "If we establish limits of care, what constitutes health care justice?"
In 1999, Schulman et al published an important article in the New England Journal of Medicine entitled, "The Effect of Race and Sex on Physicians' Recommendations for Cardiac Catheterization." They performed the study at the National Cardiology Meeting, where they showed cardiologists videos of patients who had these scripts. One patient was a black man. Another one was a black woman. One was a white man. One was a white woman. Then they invited cardiologists in to watch the tapes, and then decide which of these patients should go on for cardiac catheterization. What the authors of the article reported was that the black patients were far less likely to be sent on for cardiac catheterization than the white patients. What their data actually said was that black men, white women, and white men were referred at a rate of 90.6%, whereas black women were referred at a rate of 78.8%. The authors, in other words, lumped black women and black men together, when in fact it was the intersections of race and gender that seemed to matter, validating once again Kimberly Crenshaw's intersectionality political race theorists.
A retraction followed, and then a new piece in 2001 by Chin et al entitled "Racial Differences in the Use of Cardiac Catheterization After Acute Myocardial Infarction." Instead of staging patient clinical encounters, Chin and all reviewed the files of almost 40,000 Medicare patients hospitalized between 1994 and '95. The authors were interested in finding out whether black and white patients had been referred for catheterization within 60 days after a hospital admission for heart attack. They wanted to see if the race of the physician mattered in terms of the treatment patterns. What they found is that the race of the physician did matter, but that the use of catheterization was 38.4% for black patients and 49.7% for white patients. "Aha," they noted. "The race of the physician doesn't matter." Given what medical anthropologists know about the culture of medicine and medical training, that's not surprising to us. Of course, you know, black physicians are trained just like white physicians, so of course they're going to make the same recommendation.
Chin, however, does make an even more complicated point, which is that 30 days after admission, black patients had higher rates of survival regardless of whether they had received catheterization or not. One year, and even three years after their admission and discharge, black patients still had lower adjusted mortality rates, so more treatment didn't equal better outcomes. What was missed, though, in the skirmish over whether or not racism does or does not exist in the clinic, was the fact that each set of findings was making very different points about what constitutes health care justice. Schulman et al defined access as social justice, so if you get in there, that's all that matters. Chin et al understand it as outcomes. It's about the health following the treatment that matters. An access approach to health care justice ignores the fact that even the same treatments produce different physical responses and have different levels of efficacy in different patients. The outcome approach to treatment ignores the fact that clinic discretion can often be so powerful that one of the reasons that black patients in their study had better outcomes was because the sicker ones died before they even got to the hospital.
In general, African Americans are sicker when they're first diagnosed with cancer or diabetes, and we can trace this to poor experiences with primary care physicians who, in many hospitals, are gatekeepers for specialized care. What is interesting about the literature on health disparities is that there was this initial push to get all the questions that culminated in the Institutes of Medicine's volume, Unequal Justice, produced. Then it was followed by this sort of devolution. This sort of confusion about what it is we're trying to find. "What is social justice? How are we defining this?" Statistical data was privileged during this march to end disparities, but good researchers early on began to realize that the best data required that African Americans and white Americans be classified into sub-groups. Lower middle class, or middle class. Highly educated, less highly educated, and geography seems to matter more than anything in terms of the predictive value of disparities, regardless of race or ethnicity or gender. When race alone was used, the data was less compelling, and frankly confusing. What they determined along the way was that skin color is a fact, but race is a cultural construct, so it had not been enough for anthropologists and sociologists to be talking about this for over 100 years. It took medical researchers until this century to figure that out as they were trying to tackle health disparities.
States took on the challenge to reduce health disparities, and what they ended up doing was paying better attention to health services generally. What you find in Pennsylvania, for example, is that there are lower rates for some diseases, and the diseases of old age, there are higher rates of those, because basically you have to die of something, you know? Medical economist Uwe Reinhardt has this joke that Americans think that death is an option, you know? Another way we have reduced life expectancies, unfortunately, is that you know that poorly educated white women have reduced their life expectancy by four years over the past decade. I used to joke with my students, I used to say, "Well, you know, should we be raising the life expectancy of black patients, or should we be lowering it for Asian women in Bergen County, New Jersey, because their life expectancy is 91 years?" Now it's not a joke, you know? That's part of the way in which the life expectancy of whites and blacks are coming together.
Health disparities remain even as life expectancy has increased somewhat, but as most of you know, the United States has one of the lowest life expectancies for highly industrialized countries, so what's wrong? This takes me to part four of my argument, the sickle cell disease example. Studying the sickle cell disease community's response to poor treatment in the hospital led me to the conclusion that death panels are the best of a set of bad choices. Basically, for those who don't know, sickle cell disease is an inherited disease. It affects the hemoglobin, and what happens is, when the hemoglobin drops off in oxygen in a part of your body, it sickles, and it becomes hard and brittle, and it can't get through the veins, and it blocks. It's called vascular occlusion, and so that part of the body starts to die, and that's when you have intense pain. Pain is the number one symptom, and so black patients go off and go to the ER for treatment, and they're black in the ER, so you can imagine what the initial assumption is, which is that they're drug-seeking or malingering.
The community, the sickle cell disease community, in which I include physicians as well, have created evidence-based approaches to pain treatment, and they've used this in order to get hospitals to start treating pain as the disease, as opposed to trying to pretend like, "Oh, it's caused by some other condition." Lynette Benjamin, who's this wonderful physician, has studied the ways in which the pain is the issue, and if you can get the pain early, you can handle it within 20 minutes, have an IV in. You reduce their use of hospitalization, et cetera, et cetera. They created these evidence-based protocols that they then are encouraging institutions to implement in their ER. What is lost, of course, is the art of medicine.
The physician who implemented the National Pain Treatment Protocol in his hospital said that he knows his patients so well that he knows when depression or anxiety are intensifying pain symptoms, but he can't tell that to the ER doctors and nurses, otherwise they go back to dealing subjectively with each patient. In addition, while pain needs to be treated right away, there are treatments that don't involve opioids that are far better. Neuromuscular massage, for example, practiced by a holistic therapist in Philadelphia, is evidence-based, given that the practitioner actually went to great lengths to quantify his anecdotal information, and it was published in the journal Blood. Long-term opioid use produces secondary complications that many would argue reduce life expectancy. The trade-off, therefore, is greater access, but diminished life expectancy and quality of life. In other words, I appreciated evidence-based approaches to treatment, death panels, but good or bad, it makes transparent the rationales for which medical decisions are made. It standardizes are, and when we open these conversations up at a national level, we start dealing culturally and institutionally with exactly what we mean by health care distributive justice.
I want to conclude by returning to the beginning of my story. I am sure that everyone in the audience agreed, given our hindsight, that Donlicia's care was futile, but distributive justice in the case of health care can not rely on hindsight. It must rely on sacrifice. I'm the first to argue that mammograms should not be standard protocol for women under the age of 50, and I applaud the change from yearly physicals to every 18 months or two years, and I applaud making tests like the PSA test patient-directed, given the false positives produce all sorts of suffering. Evidence-based approaches are blunt instruments built around population studies and not individual experience. It is an approach to health care that argues that populations matter more than individuals, which is a difficult argument for Americans who so believe in individualism. Embracing death panels requires changing the social compact. Given that treatment standards allow a lot of slippage, the social compact means we have to educate people so that they can be proactive in terms of their health care, and I don't mean posters in the subway and PSA announcements on the radio or television. I mean kindergarten through 12th grade education that incorporates this knowledge. We don't need any more Akins telling us about "legitimate rape" and people believing it. We need real scientific education in the schools, around the body.
It's about changing how we distribute health architecturally through our built environments. It's about our food waste, and not only the foods we subsidize, but how we organize the work day such that we can enjoy each others' company at meals. Now I'm returning to Donlicia, and I'm going to show you just a couple minutes of a video in order to talk in other ways about what was happening with Donlicia and the family. This is in their house.
Speaker 3: [inaudible 00:41:10]
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Speaker 3: [inaudible 00:41:19]
Speaker 5: Why you didn't [inaudible 00:41:23] treatment.
Dr. Rouse: I'm going to get rid of the sound. That's the sound that was in their apartment all the time. What you notice is the amount of work, and the amount of technology involved with keeping her alive. I want to focus on the work. Donlicia's health care was one of the first times that Donnell, who you see here, could assert his competence and demonstrate to strangers that he mattered, because he cared for his child, who mattered. Saving Donlicia's life began to define his masculinity in a process I called embodiment by proxy. Donnell's life history made it next to impossible for him to get a job in which he could inspire his colleagues and that would allow him the opportunity to come home to Alicia with a paycheck, something he desperately wanted to do. As much as I respected Donnell, I was also well aware that health care for Donlicia was being treated as a reparation for racism and past social injustice. As much as we want to end health care disparities, the best place to start is outside the health care system. That's the end, and it was an interesting ending, but okay.
Speaker 6: [inaudible 00:42:50] justice?
Dr. Rouse: Well you know, there are a lot of people now studying the example in the Netherlands, and they're studying the test cases in the United States, and they're really following and trying to get a sense of, "How many people are using this? What motivates them to use it?" And I think a lot of people feel like we need to collect more data before we open the floodgates, so to speak. The thing about African Americans, and if anyone read Henrietta Lacks? Right? Yeah. You know, the problem there is that health care is sort of like a black box to them, and so there are all these urban legends that are formed because people heard something about somebody who maybe, you know, and they grow and grow and grow, because there's nobody there to educate, and I think what the African American community needs is education, because it's not about thinking that they know everything they need to know, and therefore if they reject end of life sort of euthanasia, that somehow that's an educated choice, in the sense ... You know, there has to be education.
One of the things that I'm so fascinated with is we have this sense that ... Anybody's been getting polling calls? I get calls and they say, "Well, how do you feel about this?" And I say, "Well, I don't know enough about that." And they say, "Well, it doesn't matter. You just answer my questions." I said, "But how can I answer your questions if I don't know?" They said, "Okay, well here. Here's a question." And I say, "Well, um, I can't really answer that. Can you give me some ...?" You know, I mean, it's this weird American notion that freedom means everybody knows what they want, and therefore it's up to us to allow them to do whatever it is they want, as opposed to thinking about the role of education that should precede choice. That's what I think is missing in this idea that, "Well, we can't ..." T
here's a wonderful example in a book where a doctor doesn't want to tell this couple from Mexico that maybe we should stop treating their newborn infant, who is clearly on her death bed, because they don't want to talk about letting go, because they're Catholic, right? Because they're from Mexico. They didn't talk to them. They didn't say, "Would it be a problem?" But it was this assumption based upon cultural competency, which don't get me started, you know? It's a bizarre question, given that there's not this equal push to educate all Americans about what this means, and even this whole death panel thing. You know, the media never got into exactly what that means, because sure, we have expert panels for everything around medicine. I mean, who wouldn't want to be treated by an expert?
Speaker 7: [inaudible 00:45:39]
Dr. Rouse: Well, I think that people are doing it already. They're doing it in their own way, in their own corner. If you look, all these states have been tracking how, because of the Healthy People, 2010, they've been tracking the reduction in health disparities, and they've all been doing it in different ways that works within their system. I think setting it as a goal, continuing to make it a goal not only helped African Americans and people of different ethnicities, it was helping whites, except for poor whites, which is a whole nother discussion, so yeah. That's also another problem when you're talking about social justice around health care. Do you separate one group and target them when you're a country as a whole? This came up when Tommy Thompson wrote his first version of the Healthy People Review of Healthy People, 2010, and he basically celebrated every ... He used the turn of the century as his benchmark for determining that America's great, but he didn't mention the fact that Native Americans are dying at rates of cancer that are outrageous.
I think that we have to start thinking about this as completely linked to how we live, and I mean, I just ... Every road led down to a very kind of, let me put it this way, European socialist model of health and well-being, you know? Did I answer your question? Okay.
Speaker 8: [inaudible 00:47:18]
Dr. Rouse: She was almost two years old. How did you feel watching that? Did you feel like you would have given up on her, or ...?
Speaker 9: No.
Dr. Rouse: It's an excellent question, and you have to ration health care in some ways. Right now we ration it by cost, meaning if you can't afford it, then you don't get it, but some people would argue that everyone gets sick, so why can't it be a right, considered a right? But then if it's a right, then we have to say, "Well, maybe infants that are born at 25 weeks shouldn't be rescued," right? Because the costs are too much of a burden for all. Maybe the experimental end stage ... I mean, the FDA approved a cancer drug that only increased the life expectancy of patients by 12 days. You know, perhaps we need to have a conversation if spending $200,000 for 12 days of life is worth it. But that's what happens when you start to talk about evidence-based approaches of treatment, and standardizing care. You have to have those national conversations. They're hard because it requires sacrifice, and think about what happened when people were saying, "Well, maybe we shouldn't pay for mammograms before women are 50, or require them for women who are under 50." You remember that conversation? There are a lot of people who are very wedded to particular kinds of interventions, standard interventions, that when you look at a population level, don't actually produce a type of benefit we want.
It's a tough conversation to have. That's why I use the case of Donlicia, because Donlicia in some ways seems easy for some people, but you know, it's not. You saw her. I mean, I cut out the part where I'm having this conversation. "Oh, look, she's tracking more." You know, "Oh, look, her hand isn't so tight anymore." This is after her collapse when she's finally back home. We spent so much time trying to make it seem like she had consciousness, you know? A high-functioning ... When you know, we just wanted to make everyone feel good.
Speaker 10: [inaudible 00:49:28]
Dr. Rouse: Yeah.
Speaker 10: [inaudible 00:49:29]
Dr. Rouse: There's some cultures that just are better at it, or better at figuring out how to deal with, you know, incorporating cultural idioms. Being able to handle bodies, being able to appreciate, you know, and Americans have housed it in these institutions so we don't have to see it. Americans can walk through life and not see suffering, and what's interesting is, medical anthropologists go out in the world and suffering is right in front of them, and they're like, but you know, there's suffering all around in the United States too, it's just that we do such a good job of compartmentalizing it. I completely agree. We need to start finding ways to celebrate life and death, and maybe it's because we're a nation of immigrants, and so we've all sort of kept to ourselves about what it is we do, but yeah, no, I agree, and I think that's what Uwe Reinhardt's saying.
The reason why we're so invested in health care, beyond what you would argue is rational, is because we really think it's an option. Death is an option. I have footage of her funeral as well. At the end of the day, it wouldn't have mattered if Donlicia had died 10 months earlier, you know? At the moment, it felt like, "Oh my god. We've got to hold on to her for every day we possibly can." But in retrospect, it didn't really matter, you know? This was a tragic life, a really sad death, and so that's the tough conversation, and so that's why, as I say, it's really easy to start out with this example, but then when you start to get into the nuts and bolts of it, people start to push back from it. "Oh, maybe we should keep throwing money at the problem."
Speaker 11: [inaudible 00:51:18]
Dr. Rouse: In pediatrics? Like, how do you say that about a child?
Speaker 11: [inaudible 00:51:24]
Dr. Rouse: Because there's so much hope invested in a child. You know, this is tough.
Speaker 11: [inaudible 00:51:32]
Dr. Rouse: End of ... End of ... You know, there's just ... I don't know. Joy invited me to a talk and I couldn't go because my father was injured, and it was amazing. My sister is a labor economist. She's actually going to be here next month, and we've just ... They started giving us, "Oh, we want to use this portable echogram." You know, why? He broke his hip. Why? We literally went up to the nurse and said, "Do not use this echogram. There's nothing wrong with this heart. He broke his hip. That's the end of the story." "Well, the doctor ordered it." Then she started looking, and it's like, "You ungrateful children, you." You know? And she just sort of let that feeling linger in the air, and finally we gave up. They did it. Guess what? Nothing wrong with his heart. How much did my mother pay? $5,000. It's hard to push back, even for people who know what they want.
Also, my dad was in a room with a man who has all sorts of problems with his heart, and the doctor said, "Well, you know, we can put stints in. Da da da." He said, "I just want to go home." He goes, "Oh but da da da. We can ..." "I just ..." And he started cursing at the doctor, you know? He's like in his 80s. "I just want to go home." "Do you have anybody we can call?" "No. It's none of your goddamn business." He was furious, and he goes, "Well, what do you imagine you want your life to be?" "I just want to get up in the morning, drink my tea, and read my newspaper, and be left alone." It was a fight to push back, because the wheels are turning now, and these standards of treatment are being, in a sense, developed by drug companies and medical supply machinery that then becomes part of the way in which a hospital also gets reimbursed for the expensive technologies that they're using. Pushing back on the system is going to require a lot.
Speaker 12: [inaudible 00:53:40]
Dr. Rouse: Expendable, or ...?
Speaker 12: You said [inaudible 00:53:43]?
Dr. Rouse: Oh, non-compliant?
Speaker 12: Non-compliant. Yeah. Yeah.
Dr. Rouse: Oh, yeah.
Speaker 12: [inaudible 00:53:48]
Dr. Rouse: Yeah, it's not just my observations. It's in the literature.
Speaker 12: [inaudible 00:53:53]
Dr. Rouse: I know. Chester Kroger.
Speaker 12: [inaudible 00:53:57]
Dr. Rouse: Well, first of all, there are African American patients who are non-compliant, but I don't like to use the word "non-compliant." They just are refusing. You know, they're people who don't want what the doctor tells them that they're supposed to want, and that's read as non-compliance. It's actually sometimes a rational choice to push back, you know? That's one area.
Speaker 12: [crosstalk 00:54:20]. It kind of seems like there would be some kind of [crosstalk 00:54:22].
Dr. Rouse: Well, I think doctors should let patients choose, and I don't think ... You know, I think they need all the education they can get, and at that point, you free yourself from this paternalism, and you just say, "Okay, this is how this person wants to live. Okay, you want to eat fried chicken, and you have problems with your heart?" That's terrible. That sounds like a stereotype of African Americans, which it is.
Speaker 12: [inaudible 00:54:46].
Dr. Rouse: But you know, that's how they think, you know? Fine. Let them kill themselves with bad food. If they know all of the risks, and they make that choice, okay. You know, like when do we let go of needing people to live particular aesthetic lives, with this expectation that you're going to live forever? We're not going to live forever. At one point, you have to say, you know, "It's about here and now. It's about the quality of life now. It's about a cup of red wine in the evening with a wonderful mean. You know, it's about community, and it's about ..." The whole focus on this strange notion of an ideal body, and an ideal health, is I think to the point where it's been turned into sort of a science, and has squeezed out all the humanity in terms of, like, what our bodies mean to us. Anthropologists and sociologists recognize that our bodies are more than just a kind of a rational tool for work, and productivity, and income generation. That our bodies are these symbolic bodies. They are engaged, they love, they have passion, they need other things, just then to be told, "You should be eating kale every night, and you should be ... Don't drink that cup of coffee."
You know, there's just more to life than that, and that's another thing we have to let go of. At the same time, appreciating that we should set up food ways and everything else that makes people healthier, right? That's one part of the non-compliant thing, which is that there are some people ... I mean, there are doctors throwing things at patients that they don't need, and there are white patients I know, I mean, they get a cholesterol medication, they're like, "I'm just going to stop eating meat." They stop eating meat, their cholesterol goes down. You know?
Speaker 12: [inaudible 00:56:42]
Dr. Rouse: Yeah, right? At this point, they should be. I mean, the literature now on what happens when you take cholesterol medication, then you wind up taking medication for this illness. I mean, it's just like all these complications, you wind up with, you know 12 different medications you're taking. We have to free ourselves from some of this as well.
Speaker 12: [inaudible 00:57:02]
Dr. Rouse: Right, but if you're a doctor and you think all your African American patients are irrational, then their non-compliance matters to you in a different way than it matters if you have a white patient and you do not see them as irrational. For them, you read that as choice. Okay. How can you say that ... Yes, we all live in our bubbles. I live in Princeton, you live in Swathmore. Yay. That's great, but you've seen the ads on TV. Blacks are still welfare queens. They're still one ... Oh, what was it, Newt Gingrich telling them to go to the NAACP and tell them they want a job and not a handout? Like, you know, please. You know, these things still exist. Blacks are seen as dysfunctional and lazy, and it's still there, but not at Swathmore.
Speaker 12: [inaudible 00:57:48]
Dr. Rouse: Well, you know, we're chipping away. We are chipping away at it, and you know, the demographics in the country are changing so greatly that it's just ... Yeah. I mean, things are changing rapidly, and you know, as much as I recognize African American social history, my conclusions around health care are not about targeting African Americans. It's about broadening our view of health, and taking it out of health care, because all we do is keep plowing more resources into this system that doesn't produce the kind of benefits. You know, you realize that the most life expectancy we gain is just through [inaudible 00:58:28]. We've only added 10% added life expectancy with all these medical interventions, which you know, tells you something.
Speaker 13: [inaudible 00:58:40]
Dr. Rouse: Well, I think neonatal doctors are showing that you can save children who are three months premature, and they grow up to be healthy, happy, smart, wonderful people, like you. They're already showing that data, so even in Europe, I think, they're having debates about maybe reducing that gestational age a little lower. But they all have to be ... Again, all of this, I can't believe I'm saying this to her, but you know, there's sacrifices that we all have to make in this, and I mean, it's such a tough thing to say. Americans don't like to sacrifice.
Elizabeth: [inaudible 00:59:22]
Dr. Rouse: Well, I think that the discourse is about the need to keep equalizing racial and health care outcomes had grown so much, and the institution was so afraid of the public relations, what it meant, that they kept her alive in a large part to show that they weren't ... There wasn't any poor treatment in their institution. It's a reparation in that way. It's sort of like you're trying to ... And in fact, more money is spent on end of life care for African Americans than any other group, and in some sense, we treat it as a reparation, in the sense that there's all these past years when they could have had more interventions, maybe not thrown into prison, maybe educated better, maybe ... Then we give them all this health care at the end of life, and it makes us feel better as a society, you know?
Elizabeth: [inaudible 01:00:15]
Dr. Rouse: Oh, no. I think reparations for African Americans is a long ... I don't think it's ever going to happen, and I'm not sure how you'd make it happen, so it's not that. I'm just saying that the whole discussion about racial health care disparities has turned medicine into a kind of a reparation for all of the slippages in terms of education, and in terms of communities, in terms of labor, jobs, available jobs, and so we feel better. Paul Farmer talks about how Medicare is such a great place to deal with inequality, because nobody challenges the idea of saving people's lives. It's a symbolic gesture, at the most part, but it's not necessarily a substantive gesture in terms of if you want to really think about reparations, which would be something completely different.
Speaker 16: [inaudible 01:01:07]
Dr. Rouse: Yeah. You know, I just think that this ... I'm not sure why education is so hard in this country. I have a husband who's worked in a very poor neighborhood in Newark in a school, and it's just completely dysfunctional. He raised the test scores, and then they wound up letting him go, because they couldn't stand the fact that the students all loved him. Our oldest daughter was immersed in a Spanish school, a Spanish language school, and it was in Los Angeles, and it was 60% from Spanish-dominant homes. A lot of the parents didn't have a book in the household, couldn't speak English. Some of the kids came to school, had never seen an alphabet. That school [inaudible 01:01:52] 100% graduates who were going on to college. It seems counterintuitive. You take kids from Spanish-dominant homes and you put them in a school that is immersion Spanish, and you think, "Oh, no. They're never going to learn English." That's not the case at all. It's because you honor what they know, and their culture. My daughter thought she was Mexican forever. I mean, she'd see the Mexican flag, and she'd ... Our first Christmas away from there, she didn't know any Christmas carol in English. She didn't know anything. All she knew was [inaudible 01:02:24].
You know, I mean, it's that kind of sensitivity to ... I mean, the BIA did all these studies early on about the cultural congruence of education, but we don't create environments where kids are being honored. Kids are being punished in the most draconian ways. The next time you read something that celebrates some kind of school in the inner city, you'll look, and it'll be about how they punish the kids, and how great they are for punishing the kids. Well, I want a Waldorf School in an inner city. You know what I mean? If you've read Paul Willis, we are so blessed to have Paul Willis at Princeton. Anyway, if you've ever read Paul Willis, you know, Learning to Labor, it's like, "This is it." You're taught very young that you don't have the capabilities. They aim really low, and everything else.
My youngest daughter is in a Chinese immersion school, and you leave the United States, and you find out that people don't believe in the IQ. They believe that people are taught, and it's unbelievable how they teach. It's hard to explain, but it's based on the idea that all kids are learners, that everybody can achieve a certain thing, versus Americans, where in my little community, 30% of the African American kids are in special education. How does that happen? The kids from the Spanish-dominant homes in my community- we have a Guatemalan community- none of them are in AP Spanish in high school. How do you take a kid who speaks fluent Spanish, and by the ninth grade they're so disenfranchised from the entire educational enterprise that they can't even take the AP exam in Spanish? We have to look inward, to the ways in which we reproduce social class, in a very profound way, through education.
Again, the stakes are so high at this point that parents know. They don't want competition for their kids, because income inequality is [inaudible 01:04:32]. If we didn't have such great income inequality, parents might be okay with the fact that their kid is, you know, not going to be a lawyer, or a doctor, or a judge, or whatever, and be okay with the fact that they really want to open a coffee store, or they really love flower arranging, and they want to start ... You know what I mean? Like, we're so afraid of falling. Barbara Ehrenreich's Fear of Falling. We're so afraid of falling at this point that I ... I mean, I was joking with my students yesterday about how their parents had basically formed them to be Ivy League students, and I said, "Oh, you know, your parents sent you to Kumon when you were four." And one student just went, "Ah!" You know? She just ... Post-traumatic stress. "Oh, the South Asians." You know? The stakes are so high poor kids can't compete. They can't compete anymore. But anyway, I could go on and on, but we should stop.