Medical Humanities

Article Highlight: Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results

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This week on the blog we are highlighting a paper by M.A. Rubel, A. Werner-Lin, F. K. Barg, B. A. Bernhardt, titled Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results. The authors completed phone interviews with women and their partners who had received positive prenatal microarray testing results. The authors then analyze the data using modified grounded theory, discussing the theme of cultural expert knowledge and the implications on research and practice of prenatal testing. They close by recommending a future assessment of informational needs before testing to aid both the patient and their partners.

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The authors begin by describing the increase in the use of prenatal genetic testing by pregnant women. Potential methods of genetic testing include invasive, non-invasive, and integrated screening for various potential fetal anomalies or genetic conditions. Chromosomal microarray, also called prenatal microarray, is a prenatal test that is used to “detect copy-number variants not detectable by conventional cytogenetic” (Rubel et al, 2017, 383). These test are recommended by the American College of Obstetrics and Gynecology if an anomaly is found via ultrasound. Parents feel anxiety after receiving a result of variant of uncertain significance, which can affect their decision-making following the result.

Western biomedicine helps to inform the biomedical expert knowledge (BEK) that holds a privileged status. BEK has roots in cultural and social conditions that shape how the knowledge is interpreted. BEK is founded in the idea that “aspects of the patient’s body and its symptoms are variables that can be independently and objectively evaluated and treated” (384). However, the genome may also be interpreted through a standard outside of biomedical knowledge. These other frameworks of medical knowledge may be used to interpret the testing done to women.

For this study, the authors recruited subjects for the study from the distribution of a pamphlet to pregnant women who received results from microarray testing. These women could then choose to participate in a short online survey that asked for demographic information and the results of the microarray test. The women who completed the survey and indicated interest were then e-mailed with information about the interview portion of the study. In total, 152 female patients completed the survey and 27 women were interviewed. 12 of their male partners were then subsequently interviewed.

Those who received positive results with uncertain or variable outcomes underwent a “state of crisis” after their results (388). They attempted to find the information related to their situation; some clinicians even provided the patients such biomedical information through literature and leaflets. Some patients were reassured by entrusting the health care providers to also provide the knowledge. Yet some providers may not wish to take a directive position and provide such materials.

Most of the patients interviewed expressed frustration that there was not enough information or resource provided initially by their clinicians. Patients that sought out BEK often turned to the internet. Those who considered themselves educated found it easier to search the information they could find online, yet there was still a general frustration about the BEK that was provided. Because of this frustration, patients often turned to other sources of understanding. The authors also extensively other ways of knowing and understanding their test results. These include embodied knowledge, spiritual beliefs, social networks, and a family history. These other types of knowledge other than BEK allowed the patients to understand their test results on their own terms.

The authors propose the term “Cultural Expert Knowledge” or CEK to encompass the types of knowledge that patients gained from outside the biomedical paradigm. This non-expert knowledge was some patients only information source. This provides a contrasting source of information to BEK and helps patients to understand their test results on their own terms. The authors close with a discussion about the difficulties of quantifying CEK since it is based on individual conceptions and outside of the biomedical sphere. They acknowledge the limitations of the study and provide further areas for expansion of the research base.

Article Highlight: Vol. 41, Issue 3, “Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum”

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This week on the blog we are highlighting an article from our most recent edition, Volume 41, Issue 3, by Mihan Lee entitled Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum.  The study explores the patients’ access to psychological support when dealing with a diagnosis of infertility. This is done through patient interviews and a cyber-ethnography of an online forum hosted by RESOLVE: The National Infertility Association. Lee explores the themes common across the different forum threads and the interviews to better understand the support systems of patients. Several themes emerge, such as the difficulty in obtaining treatment for many women because of resource burden and the stress of finding an option that fits within their parameters. The author proposes that not having the resources to access treatment silences women and denies them the support they came to the forum in search of.

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Patients experience of their illness during and after treatment can be impacted by the social support in their environment. Patients in the contemporary age build social support networks on the Internet, turning to it for health information and access to resources to make decisions. Infertility patients can receive both the privacy and anonymity they often desire when using online resources for support. Those who are infertile may experience stigma for their condition or shame at not being the same as others who are fertile.

The author calls the main narrative of American infertility the ‘persistent patient’. This narrative is defined by a woman who wants a child and expresses her desire for through material resources. This requires that the woman have an education and access to financial resources so that she can access the resources available to medically treat her infertility. This creates a subset of women among the rest who are able to fit the ‘persistent patient’ narrative.

For the study, the author identified women to interview through posts on the sites infertility advocacy organizations. The fifty-five women interviewed were given a demographics questionnaire and then interviewed to find their patient narratives and discover both personal and professional views on infertility. Lee also conducted a “cyber-ethnography,” a critical analysis of posts in an online patient community. This was used to compare the effects of the Internet on the social support of the women. These were followed up with more refined interviews of patients.

For many women who experience infertility treatment, there is an extreme emotional burden. There is also a pressure  experienced from the stigmatization of the condition. While infertility is a condition that affects seven million women, many women still feel like the condition is abnormal. Because of this, women keep their condition and experience private.

Within the forums, there was a running theme that friends and family did not understand the stress and struggle of infertility, which further stressed the women. The posters in the online community then became a support network for the women who were feeling an external lack of support. They were able to understand other women’s pain because it was similar to their own. However, this is offset by the validation of only certain narratives, especially through an assumed access to the resources to pursue treatment.

One type of thread, the “roll call” served as “an opportunity for all patients starting a certain type of treatment .. to connect with one another”. These roll calls allowed women of different experiences to connect with those who could offer them support through their parallel treatment journeys.

Interestingly, Lee notes that it seems as if those who most often frequent the boards are those who have had several treatment cycles. This juxtaposes the lack of discussion about the financial, time, and other resources necessary to pursue multiple treatments. Without these resources, some women cannot pursue the infertility treatments they would like. Data suggests that despite the lack of discussion, this is a prevalent problem. Most states do not require that insurance option cover infertility treatment and only 20% of employers cover ARTs.

The financial burden on women seeking treatment that was seen in the online forums was also reflected in the in-depth interviews as well. Some of the primary barriers to using ARTs was the overwhelming price. To be able to pursue these treatments, women must have type of disposable income that can go towards it. Lee suggests that the lower-income and uninsured women may either not be vocal or silenced by the culture of the forum groups. In the otherwise vocal community, posts about stopping treatment because of financial strain often went unanswered. And when there were responses, they often ignored the real constraints of financial burden.

When women bring up their concerns, the dominant narrative of the ‘persistent patient’ raises its voice louder than any of the other posters within the group. This adds further strain to the women who are worried about their financial experiences of infertility because the place where they have found solace rejects them. A counter-discourse emerges as women discuss the ways in which they have learned to cope with having a childfree life. Lee suggests that the forum should broaden its reach to offer for support as women adjust to their decision to stop treatment or inability to continue treatment.

Lee concludes that the role of the ‘persistent patient’ is one that is only available to a privileged demographic and that the socioeconomic factors that affect accessibility to resources also affects the ability of some mothers to have children. The condition of infertility is thus not experienced as a single thread and the nuances of different women’s backgrounds should be considered when hearing or researching their narrative.

 

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Conference: American Society for Bioethics and the Humanities, Oct 19-22, 2017

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This week we are highlighting four sessions from the upcoming American Society for Bioethics and the Humanities Annual Conference in Kansas City, MO from October 19-22, 2017. The sessions are categorized under Religion/Culture/Social Sciences, and include topics interesting to scholars in multiple disciplines. For the full conference schedule, visit the ASBH 2017 meeting website here.

Panel Session: China’s Forced Organ Harvesting: A Central Test of Our Time

Thursday, Oct 19 – 1:30-2:30pm

With David Li, Yiyang Xia, and Grace Yin

A decade of research by international investigators has concluded that the Chinese party-state is systematically killing prisoners of conscience on demand to supply its vast organ transplant industry. In June 2016, the U.S. House of Representatives unanimously passed H.Res. 343, condemning the harvesting of organs from Falun Gong adherents and other prisoners of conscience in China.

Researchers examined hundreds of transplant hospitals in China and analyzed data about their capabilities, capacity, personnel strength, and potential patient groups from medical journals, media reports, official statements, web archives, and government policies and funds.

The research estimates that China now performs between 60,000 and 100,000 transplants per year–more than any other country in the world. Even based on government-imposed minimum requirements, China could have performed more than one million total transplants since 2000.

The official organ sources–death row prisoners and voluntary donors–account for only a small fraction of the total volume. The victims are primarily Falun Gong meditators killed through organ extraction outside of judicial process as part of the Communist Party’s campaign to eradicate the group.

The issue of forced organ harvesting presents an opportunity and an obligation to bring medical and academic institutions to the center of bioethics. Presenters will articulate with the audience concrete actions to prevent the complicity of American institutions and individuals, including providing training, equipment, recognition, collaboration, and organ tourism to Chinese institutions that are participating in this crime. Comprehension of the issue helps institutions and individuals make informed choices and uphold social responsibility.

Panel Session: Pathways to Convergence: Sharing a Process that Aimed to Examine the Diverse Perspectives of Catholics on Advance Care Planning and Palliative Care in the United States

Thursday, Oct 19 – 2:45-3:45pm

With Robert Barnet MA MD, John Carney MEd, Matthew Pjecha MSPP, and Carol Taylor MSN PhD RN

Pew Charitable Trusts recently funded a project to examine views among Catholics in the U.S. regarding end-of-life, palliative care and advance care planning. Center for Practical Bioethics (CPB) served as coordinator for the project. A six-member steering group representing ecclesial, Catholic Health, and ethical interests, along with CPB (a secular organization) invited three groups of eight Catholics from different disciplines and perspectives to capture conservative and progressive themes within American society and among practice settings. Roles and responsibilities within those realms were prominently featured in deliberations with goal of clarifying areas of divergence, convergence and possible paths forward. The groups examined: – Social responsibility derived from tradition (how the Church presents itself and speaks in the public square and what informs this presence) – Covenant and contract (roles of free and informed consent in advance care planning and decision-making between patients and providers) – Shared decision making (Church teaching that informs specific decisions faced in goals of care conversations and interdisciplinary care planning for palliative care patients)Identified as Pathways to Convergence the groups aspired to identify common values and principles and report on the results following a convening. Presenters will explore how ethicists can use the processes, methods and findings of this group when workings with patients for whom faith tradition may play an important role and among providers, and others who share different perspectives on end of life to facilitate optimal advance care planning and palliative care.

Paper Session: Religion, Culture, and Social Sciences Paper Session 1

Thursday, Oct 19 – 4:00-5:00pm

Creating Compliance: Using Games to Engage Patients in Medical Management 

by Kristel Clayville

This presentation offers a method for increasing compliance among transplant patients. The recommendations presented are from non-medical clinical observation from a chaplain who deals with the day-to-day coping skills of transplant patients. The case studied focuses on the emotional aspects of compliance, and the attendant interpretation and recommendations focus on the social, emotional, and spiritual aspects of dealing with the existential difficulties of undergoing a solid organ transplant. Ultimately, the recommendations are for presenting medical compliance as a game that patients play rather than as a set of medical practices that sustain life. Thinking in terms of games not only helps the patient’s motivation, but it also offers the family and support network a language with which to engage the patient and help with the practices of compliance.

The Ethics of Influence: Celebrity Physicians and Social Media 

by Patrick Herron

Growth of social media has not only changed how individuals interact socially, but in how we engage with professionals too. Recognition of a physician’s social media “influence” is based on her/his ability to affect other people’s thinking. The greater the influence, the more appeal that individual has to companies or other individuals who might want to promote an idea or sell a product. Celebrity actors/athletes are often seen as prime influencers with regards to advertising campaigns, (i.e. “Got milk?” and “Milk: it does a body good”) to increase sales.

Celebrity physicians such as Dr. Mehmet Oz have used influence to promote health products and interventions, which raised considerable debate as to whether there were lapses in ethical and professional judgment. Not all physicians will have the platform of a Dr. Oz, but social media has created ample opportunities for many lesser known physicians and trainees to leverage their own professional expertise and growing social media prominence to become influencers. Such financial partnerships raise questions about conflicts of interest, professionalism and potential violations of an ethical duty of care.

The impact of social media on consumer healthcare decision making along with the dependence by consumers on their friends and families for healthcare product reviews (often shared via social media) has dramatically changed marketing. Consumer confidence and increased reliance on the opinions of physicians they follow via social media accounts can have a detrimental affect on the patient-physician relationship that consumers have with their actual health care provider.

Make Aging Great Again: Imagining a YUGE Lifespan

by Leah Fowler

The new era of longevity research seeks extended healthy life, with hoped-for interventions that would slow the aging process so that one year of clock time is matched by less than one year of biological time. Infirmities of old age would compress into a short period at the end of life—thereby increasing the ‘health span’. The benefit: living long and living well. Embedded in longevity discourse is humanity’s oldest and most pervasive wish: defying death. Slowing the process of aging, it is hoped, will lead to treatments to reverse it.

Social arenas and actors at the center of longevity are grounded in big data, big investment, and a breathtaking sense that “the person who is born today will live to 200.” A prominent longevity researcher says, “It is ageist and morally repugnant to not treat aging as a disease that needs a cure.” These expectations, fueled by aging populations, are rooted in narratives that render the possible futures of long, healthy lives as inevitable and real today. Bringing the future into the present—conveying hope and fear as moral vectors— introduces an imperative to pursue the extension of the life- and health spans as a matter of course, and devalues alternatives as non-progressive or even immoral. This paper presents a qualitative analysis of longevity stakeholders discussing the moral imperative to extend human life and free of the ravages of aging. Their narratives illustrate future social imaginaries that are central to the movement and spur us to take action today.

Paper Session: Religion, Culture, and Social Sciences Paper Session 2

Sunday, Oct 22 – 9:15-10:45am

Religion Matters: A Critical Response to Daniel Weinstock’s Appraisal of Conscientious Refusal

by Nicholas Brown

Daniel Weinstock has recently argued that it is necessary to make a distinction between freedom of conscience and freedom of religion when evaluating questions of conscientious refusal. Weinstock holds a right to refusal to care on the grounds of conscience enjoys a more privileged status than refusals made on religious convictions inasmuch as he judges religious refusals to be non-essential to the flourishing of a robust democratic ethos, and because he finds religious objections to lack a sufficient epistemological and ethical rationality that is publicly “reasonable.” The purpose of this paper is to offer a response that is both critical and sympathetic. Toward that end my argument is as follows: First, I will critically evaluate the underlying epistemological assumptions undergirding Weinstock’s privileging of conscientious over religious refusals to care. More specifically I will draw upon the philosophical work of Nancey Murphy and Michael Polyani to show not only why Weinstock’s account of reasonability is inadequate, but also why a religious ratio is just as publicly accessible as a non-confessional one. Next, I will draw upon Romand Cole’s political theory to demonstrate why religious perspectives are not only vital to the flourishing of a democratic ethos, but are so precisely because they help inculcate the critical mode of conscience that Weinstock endorses. Finally, I conclude by suggesting that Lisa Sowle Cahill’s articulation of theology as a participatory mode of discourse offers a more compelling basis upon which to adjudicate the ethical tensions entailed in conscientious refusal that Weinstock rightly identifies.

The Church Amendment Reconsidered: Lost Assumptions of the First Federal Healthcare Conscience Clause

by Ronit Stahl

In the wake of Roe v. Wade (1973), Congress passed the Church Amendment, which allows doctors, nurses, and hospitals to refuse to perform abortions or sterilizations on the basis of religious or moral convictions. As the foundation of subsequent federal and state conscience clauses, the Church Amendment operates as a powerful tool that enables healthcare providers and institutions to opt out of providing—and thereby restrict access to—contested medical interventions, typically in reproductive, end-of-life, and LGBT healthcare. Yet the legislative history of the Church Amendment offers a more complicated and nuanced set of assumptions about the intended effects and implementation of the nation’s first healthcare conscience clause. This talk will discuss the presumptions about access, disclosure, scope, and impact embedded in the Church Amendment and consider the value of a countervailing narrative about conscience clauses in an era of expanding conscience legislation.

Hinduism and Bioethics: Some Basics and Some Applications

by Deepak Sarma

With an increasing number of patients with Hindu heritage and background, it is imperative that the bioethics community begins better versed in germane issues pertinent to Hindus. What, for example, is the Hindu position on brain death and organ transplantation? What sorts of neurogenomic treatments and interventions are possible given the Hindu view of the self? How do these perspectives agree, or conflict with prevailing discourses in bioethics? Since Hindus makeup only a small population of patients they are further from the ‘center’ and from most patients. Healthcare providers, in this connection, will need to expand their knowledge of those whose beliefs are not at the center.

In the News: “Life After the Storm” and the Psychological Impacts of Hurricane Survivorship

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In our In the News post this week, we are discussing the lasting psychological impacts people face after surviving a large natural disaster event, such as the string of recent hurricanes battering the United States and the Caribbean. Building from a recent New York Times article by Benedict Carey entitled Life After the Storm: Children Who Survived Katrina Offer Lessons, available here, this post discusses how lasting damage from natural disasters can be much more than physical and economic.

September 2017. Benedict begins his article by sharing the story of Craig Jones, now 22 years old, who was in fifth grade when Hurricane Katrina in 2005 devastated his neighborhood of Pigeon Town in New Orleans. After spending years on the move, living between hotel rooms, Jones returned to New Orleans in his late teens. He remembers that “home” was not the same place he had left, and his “homesickness” became troubling anxiety and seemingly random panic attacks.

Lacey Lawrence, 22, at work in New Orleans. She escaped the floods of Hurricane Katrina on an air mattress. Now she teaches children coping skills. Credit: Annie Flanagan for The New York Times

Another survivor, Lacey Lawrence, now 22, escaped the water of Hurricane Katrina on an air mattress. Lawrence recalls the experience of seeing police officers pushing away floating bodies with oars, missing and uncle who presumably drowned, and wondering where a young cousin disappeared to for several hours. Later, at a new school, Lawrence was ill-equipped to deal with her experience. “I was getting into fights; real fights, violent ones. That was something I never did before, ever. But you lose everything and you don’t know how to deal with it – no one prepares you for that” (Benedict 2017).

Studying the psychological impacts from previous hurricanes may offer hints of what may be to come for those who have survived Hurricane Harvey, Irma, and most recently, Maria. Mental health providers and social scientists are acutely aware of the unpredictable traumatic consequences which can emanate from surviving natural disasters. Yet the impacts of surviving a hurricane may be unique.

Benedict (2017) writes, “Unlike an earthquake or a fire, flooding from a storm like Katrina or Harvey leaves many houses and buildings still physically standing but uninhabitable, simultaneously familiar and strange, like a loved one sinking into dementia.”

In a series of publications from the Stress & Development Laboratory at the University of Washington, the research teams concluded that the prevalence of “serious emotional disturbance” (SED) in young adults after exposure to Hurricane Katrina remained significantly elevated several years after their experience of the storm (McLaughlin et al. 2010). The prevalence of SED among young adults who experienced Hurricane Katrina was considerably greater than the pre-hurricane prevalence. According to a 2010 study, approximately 8% of youths were estimated to have SED that is directly attributable to their experience of the hurricane. Further, the majority of adults who developed posttraumatic stress disorder (PTSD) after Katrina, including delayed onset PTSD, did not recover within 18-27 months (McLaughlin et al. 2011).

Prior to Hurricane Katrina, the majority of the literature focuses on the prevalence of and risk for the development of mental health problems following a storm or hurricane. For example, a study of the presence of PTSD symptoms after Hurricane Mitch in 1998 in a low-income area of Nicaragua found that the occurrence of PTSD in the areas with the least damage was 4.5%, while the most damaged areas was 9% (Davis, Tarcza, and Munson 2009). Variables such as low social support, prior exposure to traumas, and poor health status were found to be universally predictive of psychopathology symptoms (Davis, Tarcza, and Munson 2009).

A 2005 study by Fried, Domino, and Shadle looked at the use of mental health services after Hurricane Floyd in 1999 and found that visits to psychologists, licensed clinical social workers, and physicians for mental health reasons were higher in affected areas after the hurricane. However, inpatient admissions and the money spent on anti-anxiety medications decreased, indicating that there were likely problems with service delivery for those that did seek help (Davis, Tarcza, and Munson 2009).

Flooded homes are shown near Lake Houston on Aug. 30 after Hurricane Harvey hit the Houston area.
Photo from NPR: Win McNamee/Getty Images

In the aftermath of Hurricane Harvey, Texas officials were “scrambling to coordinate mental health support” and the state’s psychology board issued temporary practice licenses for out-of-state therapists (Benedict 2017).

In a recent CNN article, Jesse Cougle, an associate professor of psychology at Florida State University, said that the people who stared and witnessed the destruction of Hurricane Irma will likely experience worse mental health problems than those who evacuated (Scutti 2017).

Chief of emergency mental health and traumatic stress services branch at the Substance Abuse and Mental Health Services Administration, Capt. Maryann Robinson, stated that “when you go home and now you are actually faced with what has happened — the devastation that has occurred in your home — it really does re-traumatize the individual” (Scutti 2017).

Overall, anticipating the consequences for major hurricanes should encompass more than disaster preparedness schemes and evacuations routes. Multi-state collaborations

Katrina’s young survivors, now older and reflecting on their experiences, say that “overcoming the mental strain of displacement is like escaping the rising water itself – a matter of finding something to hold onto, one safe place or reliable person, each time you move” (Benedict 2017).

References Cited:

Davis T.E., Tarcza E.V., Munson M.S. (2009) The Psychological Impact of Hurricanes and Storms on Adults. In: Cherry K. (eds) Lifespan Perspectives on Natural Disasters. Springer, New York, NY. Pp. 97-112. (Available here: http://stressdevelopmentlab.org/publications)

McLaughlin, K. A., Berglund, P., Gruber, M. J., Kessler, R. C., Sampson, N. A., & Zaslavsky, A. M. (2011). Recovery from PTSD following Hurricane Katrina. Depression and anxiety, 28(6):439-446. (Available here: http://stressdevelopmentlab.org/publications)

McLaughlin, K. A., Fairbank, J. A., Gruber, M. J., Jones, R. T., Osofsky, J. D., Pfefferbaum, B., … & Kessler, R. C. (2010). Trends in serious emotional disturbance among youths exposed to Hurricane Katrina. Journal of the American Academy of Child & Adolescent Psychiatry, 49(10):990-1000. (Available here: http://stressdevelopmentlab.org/publications)

Carey, Benedict. (September 8, 2017) Life After the Storm: Children Who Survived Katrina Offer Lessons. The New York Times. Available here: https://www.nytimes.com/2017/09/08/health/katrina-harvey-children.html?rref=collection%2Fsectioncollection%2Fhealth&_r=0

Scutti, Susan. (September 20, 2017) Resilience, suffering and silver liniings after a disaster. CNN. Available here: http://www.cnn.com/2017/09/19/health/psychological-aftermath-hurricanes-harvey-irma/index.html

Further Reading:

Davis III, Thompson, Amie Grills-Taquechel, and Thomas Ollendick. (2010) The Psychological Impact From Hurricane Katrina: Effects of Displacement and Trauma Exposure on University Students. Behav Ther 41(3):340-349.

Domonoske, Camila. (September 26, 2017) Long After The Hurricanes Have Passes, Hard Work – And Hazards – Remain. NPR. Available here: http://www.npr.org/sections/thetwo-way/2017/09/26/552063244/long-after-the-hurricanes-have-passed-hard-work-and-hazards-remain

Fothergill, Alice, and Lori Peek (2015) Children of Katrina. Austin: University of Texas Press. Available here https://utpress.utexas.edu/books/fothergill-peek-children-of-katrina

McLaughlin, K.A., Fairbanks, J.A., Gruber, M., Jones, R.T., Pfefferbaum, B., Sampson, N., & Kessler, R.C. (2009). Serious emotional disturbance among youth exposed to Hurricane Katrina two years post-disaster. Journal of the American Academy of Child and Adolescent Psychiatry, 48:1069-1078. (Available here: http://stressdevelopmentlab.org/publications)

Shear, M. K., McLaughlin, K. A., Ghesquiere, A., Gruber, M. J., Sampson, N. A., & Kessler, R. C. (2011). Complicated grief associated with Hurricane Katrina. Depression and Anxiety, 28(8):648-657. (Available here: http://stressdevelopmentlab.org/publications)

Article Highlight: Vol. 41, Issue 3, “Shame, Blame, and Status Incongruity: Health and Stigma in Rural Brazil and the Urban United Arab Emirates”

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This week on the blog we are highlighting a paper by Lesley Jo Weaver and Sarah Trainer entitled Shame, Blame, and Status Incongruity: Health and Stigma in Rural Brazil and the Urban United Arab Emirates. The authors build on sociologist Erving Goffman’s classic notion of stigma as a social phenomenon to investigate the stigma attached to two seemingly disparate conditions: food insecurity in rural Brazil, and obesity in the urban United Arab Emirates. The authors’ analyses emphasize that both circumstances are stigmatized because they represent a deviation from a deeply-held social norm. Additionally, in both cases, the stigma related with food insecurity and obesity is likely at least as damaging to personal wellbeing as are the biological effects of these conditions. To close, Weaver and Trainer suggest that these forms of stigma transcend individuals and are principally structural in their origins. Viewing stigma as a common element of the human condition refocuses the analytic lens toward structural-level factors that need to be addressed in order to improve human wellbeing.

Weaver and Trainer begin by discussing the theoretical grounding of stigma. Frequently defined as an indicator of disgrace signifying physical, moral, or social flaw, stigma is a powerful determinant of physical and mental health. Whether externally imposed by others or internalized and self-directed, stigma may come from or produce feelings of shame and embarrassment. Sociologist Erving Goffman described stigma as a “single social process uniting a dizzying range of conditions and behaviors… Stigma is stigma because it is ‘fundamentally discrediting’—that is, it is perceived to index something inherently negative about a person.”

Precisely because stigma draws on core beliefs held by mainstream society and has consequences for both physical and mental health, stigma should be a public health concern. Having a unitary conception of stigma can be operationalized as status incongruity—that is, the potentially measurable difference between culturally held attitudes of what people should be or achieve in a given realm, and what they are actually able to be or achieve.

Food insecurity is defined as a lack of secure access to safe and culturally appropriate foods at all times. Food security is often stigmatized since it may be a public symbol of poverty, or force one to have to obtain food in socially unacceptable ways. Even when not visible, food insecurity often generates self-directed stigma, often with damaging psychological impacts and experiences of status incongruity.

While clinically obese bodies are an epidemiological norm worldwide, they are rarely socially normalized in modern Western cultures. Further, evidence suggests that obesity stigma has increased along with increasing global obesity. Obesity cannot easily be hidden, and therefore stigma acts through both internal shame and external blame, which distinguishes it in profound ways from food insecurity. Stereotypically, obesity stigma stems from a combination of Western beauty ideals of aesthetic thinness and increased risk of ill health, along with moral beliefs that obesity signals lack of control. Further, obesity now can serve as a visible marker of poverty in many cultural settings, signaling status incongruity.

The authors discuss two different case studies—Brazil and the UAE—precisely because the severity of the differences between the settings exemplifies the powerful underlying similarities in the ways stigma influences health and well-being through feelings of shame, blame, status incongruity, and social isolation.

Weaver’s research in rural Northern Brazil focused largely around food insecurity and mental health. Ethnographic research conducted in urban Brazil establishes that bodies are read as high or low status, and weight and body shape are a key part of that. There is also an agreed-upon set of factors that signal the “good life.” These signals include things such as the ownership of a television and computer, participation in leisure activities, and the attainment of a desirable body shape. Some food items signal luxury and abundance while others carry stigma because they indicate humbleness, if not outright poverty.

Household food insecurity scores collected from pilot study phases were associated rather strongly with symptoms of depression among heads of household. The depression associated with food insecurity in this setting may be a result of the understandable stresses of having limited resources, but potentially also a result of the shame related to having to eat low-status foods or engage in non-normative food behaviors, such not being able to invite neighbors to eat or reciprocate sharing food.

Many people reported that they were unaware of food insecurity in the community, despite the authors’ documentation of its frequency. It appears in this setting that the harmful effects of food insecurity on mental health might stem more from self-stigmatization of one’s own food insecurity than from active stigmatization by others. The authors state they suspect that shame and self-stigma surrounding food insecurity motivates people to hide it.

In the United Arab Emirates, the authors’ discussion of stigma focuses on interwoven behavioral and aesthetic norms, and stigma related to perceptions of deviations from these norms. Food and eating patterns, as well as bodies and body norms, have seen particularly profound changes over the course of only twenty or thirty years of intense socioeconomic, structural, and cultural shifts. Despite the conspicuous consumption and wealth on display in the UAE, poverty and food insecurity are also present within the local population and foreign workers, but again the social pressure to hide such deprivation was intense.

Much more publicly considered in the UAE is the growing apprehension over obesity and associated chronic diseases. While “fatness” was once a desirable physical characteristic, especially in women who were expected to “fill out their skins” in order to display familial wealth, today young people reliably express physical female beauty ideals that aspire to an hour-glass shape, while stigmatizing bodies categorized as too fat or too skinny.

At issue here are “bodies that don’t conform.” The implications of lack of cultural consonance with body norms in this context are serious. In the UAE, the recipients of stigma are very thin or obese bodies, and in Brazil, the recipients are people experiencing food insecurity. The moral discourse around these issues, the ways in which this stigma is enacted, and the importance of specific types of stigma over others varies in important ways between research sites, however. The relative importance of internal versus external stigma in each case is likely related to the fact that one condition (food insecurity) can be hidden, while the other (obesity) cannot.

For the authors, a second common element linking these two cases of stigma is the fact that each signifies a departure from a social norm, accompanied by intense social isolation. Third, both food insecurity and obesity have well documented consequences for physical health, as well as important but poorly understood consequences for mental and social health. Weaver and Trainer states that these common features suggest stigma around food insecurity and obesity can be conceptualized as two “outlets” for the same social phenomenon: “health stigma.”

The authors conclude by asserting a useful implication of considering stigma as a single social phenomenon is that it refocuses away from the individual and toward structural causes of stigma. While the everyday issue of stigma is enacted on the individual level, stigma is only stigma because people concur at a larger population level that a position is stigma-worthy. Focusing on the commonalities between stigma experiences functions as an important reminder that stigma is not just personal but also collective. Policy implications of stigma-as-structure have largely been overlooked.

Book Review: “A Surgeon in the Village”

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This week we are highlighting a book review written by Veronica Tomasic originally published in MedHum Daily Dose, a blog for the intersections of medicine and humanities, available here. The book is entitled A Surgeon in the Village: An American Doctor Teaches Brain Surgery in Africa (2017) by Tony Bartelme, published by Beacon Press.

A Surgeon in the Village: An American Doctor Teaches Brain Surgery in Africa (Beacon Press, 2017) is the story of American neurosurgeon Dr. Dilan Ellegala’s efforts to provide medical aid in Tanzania. It was written by Tony Bartelme, an American reporter for Charleston, South Carolina’s Post and Courier; Bartelme is a three time Pulitzer prize finalist, including for the series that formed the basis for this book. The Post and Courier’s executive editor relayed a story to Bartelme about a “crazy brain surgeon who opened a guy’s head with a wire saw in Africa”; Bartelme’s interest was piqued and thus began the story that he narrates here (269).

A Surgeon in the Village is a bildungsroman of sorts. It describes the beginning of Ellegala’s career as a neurosurgeon and his personal journey toward finding meaning in his work. It is also about his ideas for how foreign medical aid should be delivered, and the growth of an organization, Madaktari Africa (Madaktari means doctors in Swahili), that he formed as a result of his ideas.

We first meet Ellegala when he has just completed his neurosurgery training in the US. He is burned out after years of grueling residency and fellowship programs. He travels to Tanzania for six months, volunteering to perform brain surgery at a small, remote hospital. Ellegala is determined to spend as much time as possible vacationing while there. But his plan changes after he starts to attend daily morning meetings where the visiting foreign students and MDs, and local medical personnel gather to discuss their cases. Ellegala observes that the foreign students sit in a privileged position at the front of the room, while the local personnel — such as assistant medical officers (or “AMOs,” who have paramedic plus a few years’ level of training) — stand at the back of the room. This disturbs his sense of propriety — in the US, medical students typically stand or sit behind attendings and residents. He insists that the students and local personnel trade places, a shift that becomes a central organizing metaphor for the book. The change symbolizes the degree of responsibility Ellegala believes the local staff should have for the care they provide, and the respect he feels they should be shown by foreign visitors.

Galvanized, Ellegala starts to rethink traditional models for providing aid in Tanzania, a country with limited resources to train and keep its own MDs. Rather than encourage foreign MDs to travel to a hospital, perform surgeries for a brief period of time and then leave, Ellegala realizes that it makes more sense to train local AMOs to perform neurosurgical procedures. If they can take over, he reasons, a hospital will transition from being dependent on outside help to being self-sustaining. Ellegala notices an AMO who has a surgeon’s confidence about him, Emmanuel Mayyega, and he trains him to diagnose and perform operations for a number of conditions, such as intracranial tumors, head trauma, and hydrocephalus. Eventually, Mayyega trains others. And thus began the “train forward” movement in Tanzania.

Bartelme weaves through his account the challenges Ellegala faces in his career as he devotes time, money, and considerable energy to Madaktari Africa. He also describes some of the ethical issues that are raised by the “train forward” practice. For example, should we accept that people will die in countries where there are not enough traditionally-trained MD surgeons to perform surgeries? Or should surgeries in these countries be performed by people with limited training and supervision because they can save lives? And what about the liability exposure for people trained under such circumstances? One area where the book could have been strengthened would have been to devote a chapter to the history of aid organizations and their varied philosophies. While mention of organizations such as Smile Train, or Paul Farmer’s Partners in Health, among others, are interspersed throughout the book, it was never clear to me whether Ellegala was the first person to conceptualize “train forward,” or whether such a practice had already been established in other countries.

Altogether, A Surgeon in the Village is a warmly engaging account of one doctor’s efforts to make a difference in a part of the world that has limited medical resources, and the personal rewards his efforts afforded him. It would be useful for medical providers and students to read, as well as anyone interested in how best to provide aid to other countries.

Veronica Tomasic (PhD, JD) practices community law in the New Haven, CT, area. She is a scholar of literature, painting, psychoanalytic theory, and end-of-life issues.

For more information about the book, visit the Beacon Press website, here.

From the Archive: “On the Social Constructionist Approach to Traumatized Selves in Post-disaster Settings: State-Induced Violence in Nandigram, India”

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This week we are highlighting an article from September 2015 (Vol. 39, Issue 3) entitled On the Social Constructionist Approach to Traumatized Selves in Post-disaster Settings: State-Induced Violence in Nandigram, India by Kumar Ravi Priya. The article discusses how a social-constructionist analysis into exploring how the continuity of self-hood is threatened or altered within socio-political and cultural contexts generates the experiences of suffering and healing. Through an ethnographic study conducted among the survivors of political violence in Nandigram, India, Dr. Priya aims to study the experiences of suffering and healing among the traumatized selves.

Priya states that the distressing experiences of survivors are understood in psychology and psychiatry principally as the behavioral symptoms resulting from an “incomplete emotional and cognitive processing of traumatic events.” With such an exclusive focus on the intra-psychic processes, trauma-related distress associated with the cultural interpretation of loss is largely ignored. Through an ethnographic study among the poor farmers of Nandigram, India, subjected to violence from the state government as it tried to forcibly acquire their land, Priya discusses the utility of the social constructionist paradigm in understanding the survivors’ experiences of suffering and healing within the cultural and sociopolitical context of violence.

Multidisciplinary approaches to subjective experiences of trauma state that a complete focus on posttraumatic stress disorder (PTSD) may be ontologically irrelevant in cultures that do not value the notions of an individualistic self. Priya states that unlike the positivist tradition of research within mainstream psychology and psychiatry, the social-constructionist paradigm opens up the scope for psychological understanding of human experiences in their sociocultural and historical contexts. Alternative conceptualizations of the psychological impact of trauma must incorporate the cultural notions of self and how its coherence is threatened and re-negotiated amidst the traumatic events and their sociopolitical consequences.

For Priya, people can suffer from what they have lost of themselves in relation to the world of objects, events, and relationships. Such suffering occurs because an intactness of person, a coherence and integrity, comes not only from intactness of the body, but also from the wholeness of the web of relationships with self and others. The wholeness that a person experiences may be threatened if they not able to uphold the culturally valued aspects of self-definition. Yet it is the social world, even when mutilated in war or violent events, that holds the key to recovery or healing. Healing can be described as the process of restoring the experience of wholeness by reformulating aspects of person in a new way.

Priya uses themes of suffering and healing to highlight how the traumatized selves experience intense distress resulting from disruptions to a sense of wholeness. Yet this wholeness may also be reformulated through culturally valued beliefs. Themes include “experience of PTSD symptoms,” “betrayed self,” “overwhelmed by loss,” “biographical disruption,” “moral reaffirmation,” “sense of togetherness,” and “sense of security due to change in political environment.”

Aman, a 36-year-old man who worked as a daily-wage laborer, lost his teenage son in an attack on a political demonstration he was participating in. Aman’s account often reflected his distress due to sorrow and grief, as well as his inability to comfort his inconsolable wife. “At 12 midnight or 1 a.m., I am reminded of my [deceased] child, I start crying. I do not know when I fall asleep while crying.”

In the case of Aman, such an experience of loss of relationship may have an overpowering or overwhelming impact. This impact may render the past and immediate future difficult to be comprehended by the survivors. In Priya’s analysis, despite being overwhelmed, Aman also shared a sense of fulfilment over the martyrdom of his son. He also shared a new enabling meaning in life through culturally valued beliefs of taking care of one’s family.

For Priya, a social-constructionist analysis into exploring how trauma in post-disaster settings affects the continuity of selfhood goes beyond the traditional psychological PTSD diagnosis and generates the experiences of suffering and healing.

Article Highlight: Vol. 41, Issue 2, “The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time”

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This week we explore Lone Grøn’s The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time. Grøn explores moral work and moral selves in the context of the obesity epidemic and weight loss processes. Cheryl Mattingly’s notions of “moral laboratories” (Moral Laboratories: Family Peril and the Struggle for a Good Life, University of California Press, Berkeley, 2014, available here) explore moral cultivation over time that cannot be disconnected from notions of biographical and narrative self. Building off Mattingly’s concepts, as well as philosopher Bernhard Waldenfels’ phenomenology, Grøn proposes the notion of a responsive self.

Grøn begins by introducing Rita, a participant in the obesity program at The Lifestyle Center, a Danish patient school which teaches self-care, diet, and exercise practices to people suffering from or at risk of what is termed “lifestyle-related diseases.” Grøn explores Rita’s reflections on obesity and weight loss, with specific attention to the transformation in notions of self, agency, and morality from fieldwork between 2001-2003 and 2014-2015.

Rita asks herself questions about her weight loss struggles, such as, “Why don’t I grow-up enough to take responsibility for my own well-being? Why is what I know to be the right thing to do a million miles removed from what I do in reality?” References to fighting the evil will or desire of your body, to sinning and backsliding, are plentiful and situate weight loss in the domain of morality. This places the concerns and reflections on weight-loss within broader historical and cultural ideas on self, agency, and morality, asking what kind of self one is able to be in the face of conflicting wills and moral demands.

Grøn takes up an argument that Mattingly put forward and developed, namely that moral cultivation over time cannot be disconnected from a notion of self.  Up until the last decade of the second millennium, attention to the relationships between body weight, food, and health were scarce in a Danish setting marked by cultural practices and values of “hygge,” that is, socializing by sharing food and alcohol, often to excess. Over the past two decades, this relationship has changed dramatically, and the consumption of food and drink have become morally charged in all corners of Danish society, from family spaces to the widespread network of institutions constituting the Danish welfare system. Further, a politically announced “paradigm shift” in the beginning of the second millennium in Danish health care services shifts attention from the treatment of acute diseases to the prevention of chronic diseases.

Grøn states that in many ways being obese has become an uninhabitable position. What used to be big and cozy (“hyggelig”) has become obese and alien. In the face of overwhelming personal and family histories of unsuccessful attempts at weight loss, temporary success is usually followed by increasing weight gain in a pattern widely documented in the scientific literature on weight loss processes over time. Both personal and family experience and scientific evidence define success as improbable, yet families struggling with obesity continue to experiment against the odds all the same. Thus, for Grøn, life itself becomes a laboratory.

Taking the experienced and biographical self seriously has allowed acknowledgement of the immense work of moral experimentation that Rita has engaged in over a lifetime. Furthermore, many other events and projects make up her life, including the cultivation of healing powers, of a garden of flowers, as well as of a home, family, and work life. This picture of Rita’s moral self could easily be lost if we were only concerned with the “obese” self, which can be constituted through workings of the bio-power and governmentality techniques of the Danish welfare state.

Grøn concludes by detailing the characteristics of the responsive self, emerging within the demand response dynamic. The responsive self displays both an event form that persists over the years (“I respond, therefore I am”), but also changes in terms of the content of the response. Thus, the notion of the responsive self stresses equally the suffering and the agentive dimensions of action—”an active passivity and passive activity.”

Lone Grøn is a Senior Researcher at VIVE The Danish Centre of Applied Social Science in Denmark, as well as a Senior Project Manager at KORA. She has done extensive anthropological research and ethnographic fieldwork on patient perspectives on chronic diseases, obesity, and behavioral change, highlighting the complexities of health work in the contexts of everyday lives. Her recent areas of research concern include social contagion in epidemics of non-communicable diseases and conditions, specifically in relation to kinship, relatedness and obesity; vulnerability and inequality in old age and the search for the good old life; and theoretical developments within philosophical and moral anthropology as well as phenomenological approaches in anthropology, which serve as the epistemological ground for experience-near and close-up studies of patients, citizens and families.

University of Washington Today: Q and A with Janelle Taylor

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Yesterday we highlighted Janelle S. Taylor’s article from the latest edition of Culture, Medicine, and Psychiatry entitled Engaging with Dementia: Moral Experiments in Art and Friendship, available here. In this post, we follow up with a link to a recent Question & Answer session with Taylor by Kim Eckart, posted on the University of Washington Today website. Included with the Q & A interview is a video with Taylor entitled “How friendships evolve when one person has dementia.” In the video, Taylor discusses her research and the implications of the moral challenges taken on by people who have friends with dementia. Visit the UW Today post here.

Article Highlight: Vol. 41, Issue 2, “Engaging with Dementia: Moral Experiments in Art and Friendship”

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This week, we are featuring an Article Highlight written by Monica Windholtz, an Integrated Graduate Studies student in the Anthropology and Bioethics departments at Case Western Reserve University. Monica highlights Janelle S. Taylor’s article from the latest edition of Culture, Medicine, and Psychiatry (Vol. 41, Iss. 2), entitled Engaging with Dementia: Moral Experiments in Art and Friendship. The article examines activities and social circumstances used to involve people with dementia in the world. Taylor depicts the steps involved in creating ‘moral experiments’ that plant patients with dementia in life. Through interviews with caregivers of people with dementia, Taylor explores the role of art and community in engaging those with dementia.

In this article, Taylor analyzes the experiences of individuals with dementia as relayed through the narratives of their caregivers. The article begins with the concept of media portrayals of dementia. Dementia is typically not represented well in the media, with stories devoid of “either subtlety or compassion” (285). In 2014, Julianne Moore received critical acclaim and an Academy Award for her role as the titular character in the film Still Alice, based on a book. The book and movie both chronicle the decline of Alice Howland, a brilliant scientist, as she suffers from early-onset Alzheimer’s Disease. While her husband and two oldest children are unable to confront the changes in Alice and focus only on treatment, her daughter Lydia attempts to understand her mother and engage with Alice’s new world. The article highlights Lydia’s artistic interactions with her mother to introduce the concept of the positive impacts of art and relationships to those with dementia.

While there is currently no effective cure for dementia, caregivers attempt to guide those with dementia to live full lives. The arts have especially served as a way to engage people with dementia, using programs in “storytelling, poetry, painting, dance, theater, [and songwriting]” (287). These programs engage and enrich the lives of individuals suffering with dementia. Artistic forms of expression help to imbue the lives of dementia patients with meaning. In Seattle, such programs to connect with dementia patients have been increasing.

Taylor labels these programs as “moral experiments,” following the work of Cheryl Mattingly where experiments are created by people trying to do the right thing (289). By attempting to enrich the lives of those with dementia, artistic programs are exploring new ways to bring meaning to their daily experiences.

Through an analysis of her interviews, Taylor recounts the experiences of those who have served as caregivers for family members or friends with dementia. In one case, a woman named Janet offered to help engage her friend’s husband, who was suffering with dementia. Their interactions formed a strong friendship between Janet and the husband, enabling him to still feel a sense of community, even as a patient with dementia.

Taylor found that caregivers and friends of those with dementia often see themselves as modeling or teaching proper behaviors to the rest of society, which may exhibit apprehension or discomfort when engaging with dementia patients. Since these anxious attitudes are common, caregivers may have interventions with their social groups or instruct others in how to interact with the individual with dementia. According to Taylor, people should attempt to interact with dementia patients, as they still understand the social environment, even if the context is not clear. Thus it is important for communities and social groups to still recognize the person with dementia in social settings.

Another striking example of people coming together was with the caregivers of Jacqueline, an immigrant woman in Seattle. Jacqueline had relied on the care and help of her mother in the home for many years, but soon after her mother’s death Jacqueline developed dementia. Those that knew Jacqueline were drawn into greater involvement in her life because of her dementia, and helped with the tasks her mother had otherwise taken care of. The group even created a calendar to organize their efforts to aid her.

The Still Alice novel uses the motif of a butterfly to reflect the theme of transformation while still being the same being. As discussed by Taylor, one caregiver of a dementia patient referred to the group that sought to improve the patient’s life as their ‘cocoon.’ The article reflects on the prominent transformations that patients with dementia undergo, and how cocoons and butterflies can both serve as symbols for the moral communities that protect and engage the patients.

In conclusion, Taylor reflects how Still Alice shows that it is not only science and medicine that can improve the lives of those with dementia. Engaging dementia patients through art and the community can help to improve their lives. Finally, there is further room for anthropologists and other researchers to understand and document these other forms of support and improvement.