Health

Clinical Decision Making in Rural China

September 25, 2020 by Hanna Pickwell

Society for East Asian Anthropology
By Xisai Song
September 16, 2020

This piece is part of an SEAA series on “An Anthropology of Ethics in East Asia.” The articles examine how individuals cope with societal changes such as environmental crises, nationalism, economic development, and mobility through a lens of everyday ethics.

As a life-sustaining treatment for patients suffering from kidney failure, hemodialysis has been ridden with controversies since its emergence. It is a “half-way technology” that can neither cure the disease nor provide a sense of comfort, but jams patients into a long and torturing status between life and death (see for example, Fox and Swazey 2001; Kaufman 2015). The life quality for patients on hemodialysis is extremely low: they have to constantly practice self-discipline in food and water consumption (only one small cup of water a day) and chronically experience a long list of complications such as itchy skin, sleeping problems, and bone diseases. Unless acquiring kidney transplants, patients have to depend on hemodialysis until death.

In 2019, I conducted fieldwork in the hemodialysis ward of a public hospital in Qiushui, a poor, mountainous county in northeastern Sichuan, China. There were 95 patients suffering from kidney failure who regularly visited the ward for a four-hour hemodialysis treatment two to three times a week. The majority of them were from the county’s rural areas, among whom most were former migrant workers. They used to work as laborers such as factory workers, construction workers, and truck drivers in coastal provinces in China, but returned to their hometown to receive hemodialysis treatments. Half of these patients were under 45 and 10 of them were in their twenties. In spite of their young age, only six patients in this ward were waiting to receive a kidney transplant. Why do so many patients choose the arduous hemodialysis treatment instead of kidney transplant? How is their clinical decision making formulated in the social-historical and political context of China today?

Photograph of the interior of a hemodialysis ward — Image description: There are about half a dozen beds in this corner of the ward, all accompanied by hemodialysis equipment. The ward is clean and well-lit. There is a large, partially opaque window stretching across one wall of the ward letting in a small amount of light.
Caption: A corner of the hemodialysis ward. Xisai Song

What shocked me when doing fieldwork in the hemodialysis ward was how grateful those patients were to the state, in sharp contrast to what has been documented in anthropological studies in other contexts where poor patients attributed their reluctance to receive kidney transplants to social and structural problems (for example, Hamdy 2012). Coexistent with their indebtedness to the state was patients’ intensive moral anxiety and self-blame. State-sponsored insurance schemes and the “Targeted Measures in Poverty Alleviation” (jing zhun fu pin) program cover 75 to 90 percent of patients’ medical expenses, making hemodialysis financially accessible. These state welfare programs made patients feel included into the political order. At the same time, although migrant workers are constitutive of creating the new socioeconomic landscape of reform-era China (Zhang 2001), they are displaced from it immediately as they lose their ability to work. Unemployment is common among these former migrant workers on hemodialysis because their bodies can no longer handle the heavy labor required to keep their jobs as blue-collar workers. As a result, families, both as a cultural source of support (Kleinman 1980; Yan 2017) and an agent of the biopolitical state (Ma 2020), become the default safety net that patients depend on for financial support and for care. Caring for a sick family member is a long-standing moral norm in China. In poor rural households, however, caring involves meticulous calculations and moral tensions; families strain to coordinate their limited resources including labor, money, opportunities, and life prospects. Consequently, clinical decision making, discursively framed as a private act of family responsibility, is in fact a dilemma of survival. Deciding on treatment options like kidney transplantation entails moral struggles of evaluating and comparing life values among family members.

For Shan, a patient in her early fifties, kidney transplantation was “meaningless.” Instead, her primary concern was her son’s marriage. Shan was from a rural village in Qiushui. She and her husband were factory workers in southern China. In 2013, Shan was suddenly diagnosed with kidney failure and came back to Qiushui to receive hemodialysis treatments. Shan’s husband also quit his job to take care of her, because Shan suffered from serious complications and couldn’t live by herself. Her son, who was 18 then, dropped out of school immediately and started working as a migrant worker to shoulder the financial responsibility of the family. In the past seven years, Shan and her husband had to rely on her son to pay Shan’s medical bills as well as their living expenditures. “I cried every time I received money from my son. I put too much pressure on him,” Shan once said to me. Shan’s son was 25 and remained single, which was absurd in rural areas where the marriage age was early. In Shan’s village, people called her “bottomless pits of trouble” (wu di dong) and no matchmaker ever introduced a girl to her son. Shan’s son also didn’t find a girlfriend in his workplace. Shan was extremely guilty that her son hadn’t finished school and blamed the difficulty of her son getting married on herself. Shan never considered kidney transplantation, refusing to add more burdens to her son. The financial cost of post-transplant medications was comparable to that of hemodialysis, while the possibilities of recurrent hospitalizations and relapse of kidney failure would further their trouble. Shan’s biggest wish was that her son would build a family of his own before her own death. Her family spent a large portion of their savings remodeling their house in 2019. A new house is an important cultural and economic symbol indicating that a family is ready to welcome a daughter-in-law. Bioethical principles of informed consents and patient autonomy have gained plenty of anthropological scrutiny.

In addition to worries over financial and caring burdens, many young patients regarded kidney transplantation as “useless.” The story of Jinwei, a patient in his mid-thirties, is one example. Growing up in a rural village of Qiushui, Jinwei went to Guangdong, a southern province at the age of 16 in 1998. Jinwei aspired to make a fortune and to snatch a good place in China’s emerging market economy. He started as a factory worker, but later became a gang member. Although his income was much higher, he ended up getting imprisoned for three years. After his release, he went back to working in a factory. Jinwei described the 1990s as a golden age of opportunity. Seeing some of his old friends getting rich, Jinwei was determined not to be left behind. He went to Beijing and invested his life savings into running a restaurant. The business failed a few years later, and Jinwei returned to work in a factory. This was where he met his wife, a fellow worker. In 2018, they got married and his wife became pregnant with twin boys. However, in the same year, Jinwei was diagnosed with chronic kidney disease (CKD). His CKD quickly progressed to the end stage and he started hemodialysis in early 2019. His boys were only three months old. Jinwei firmly refused to sign up for a kidney transplant waiting list. People with kidney transplants should still avoid heavy labor. That is to say, transplantation would not change the fact that Jinwei had lost his ability to work. Reflecting on the past 20 years, Jinwei demonstrated a strong sense of regret and failure, thus having no confidence to build a new life with a disabled body if he were to receive a kidney transplant. Jinwei didn’t bother to undertake the risks of a transplantation surgery, but would rather spend the surgery fees on raising his boys. He was immensely remorseful for his inability to provide his boys with an adequate life. Jinwei strictly practiced self-discipline in everyday life in order to maintain his body in a stable condition and to prolong his life, which extended beyond following medical advice to his moral endeavor to be a good father.

Bioethical principles of informed consents and patient autonomy have gained plenty of anthropological scrutiny. Scholars critique bioethics’ underlying liberalism and science-centric frameworks that overlook the complexity of local moral worlds and obscure structural inequalities (see for example, Kleinman 1995; Mol 2008; Pinto 2014; Rapp 2000). For Shan and Jinwei, their treatment choices are neither autonomous nor orient toward themselves. Instead, they gauge the overall well-being of their families and prioritize the benefits of the ones with relatively better life prospects—their children in both cases. Their seemingly intergenerational moral acts such as the sacrifice of Shan’s son, Shan’s motherly love, and Jinwei’s pursuit of good fathering have, however, obscured these poor patients’ predicaments caused by socioeconomic marginalization. For Shan and Jinwei, the chronic effects after transplantation—including the inability to work, long-term medication, and dependence on care—outweigh the benefits that transplantation can bring. Thus, they deem kidney transplantation worthless. Like Shan and Jinwei, most former migrant workers in the hemodialysis ward of the hospital in Qiushui regard kidney transplantation as being of little help to their life hardships, which challenges biomedical standards of medical efficacy. Instead of applying to individual biological bodies, medical efficacy is unevenly distributed to patients of different social statuses.

Xisai Song is a PhD candidate at Cornell University. Her study examines how lower-class patients struggle with chronic kidney disease in China. Her research interests include chronicity, medical ethics, health inequality, and the ways in which biomedicine is contextualized into non-Western contexts.

Cite as: Song, Xisai. 2020. “Clinical Decision Making in Rural China.” Anthropology News website, September 16, 2020. DOI: 10.14506/AN.1498

Family in the Ruins of Nuclear Risk

June 8, 2020 by Hanna Pickwell

Society for East Asian Anthropology
Jieun Cho
April 29, 2020

This piece is part of the SEAA series “An Anthropology of Ethics in East Asia.” The articles highlight different aspects of moral values and ethical practices in a range of Asian regions. They examine how individuals cope with societal changes such as environmental crises, nationalism, economic development, and mobility through lens of everyday ethics.

“I chose to not worry about radiation anymore, for as long as I stay living here; to live normally again for my children and my family,” said Kazumi, a mother of two children, who had decided to stop trying to move out of her neighborhood for the time being. Nine years after the Fukushima Daiichi nuclear disaster, I was listening to her confession of choosing to “live normally again” at a tea party for parents who were managing their anxieties in the face of long-term exposure to low-dose radiation in nuclear-affected areas. Employing the term “choice”, which has become all too familiar for people living in conflict-ridden areas that have not been evacuated (cf. Little 2019), Kazumi chose to give up “endless worries” as her own child-raising strategy. But what does this choice do for her in such an extraordinary environment? And what is this new normal life Kazumi is trying to make if it needs to be constantly chosen and confessed as such? Based on my ongoing fieldwork with families living with lingering post-Fukushima radiation, I take such choice as indexing an ethics of what I call balancing. Familial norms fail to provide actionable options when clearly the most effective way to protect children is to relocate to a risk-free elsewhere.

Kazumi lives in Koriyama City, one of the regions slightly outside the officially demarcated evacuation zone in Fukushima. In such a shadow zone, a life amidst unrecognized forms of nuclear risks has been effectively normalized with a newly introduced level of permissible radiation exposure—20 times the pre-disaster level for Fukushima. Although public debates over the long-term effects of low-dose radiation have escalated over time, amounting to what one may call science wars among ministries, academia, and citizens (Kimura 2016; Polleri 2019; Sternsdorff-Cisterna 2018), children’s health from the perspective of radiological protection has come to hold a central place in the imaginaries of biological vulnerability. However, those who have chosen to remain or return are left largely on their own with only limited help from central and local government (Lies 2017; McCurry 2017). Resources available for mitigating nuclear risks are differentially distributed along pre-existing lines of social, political, and economic inequalities; some could afford to leave while others were forced to make do by purchasing food from cleaner areas. Still others could scarcely afford anything. In a prolonged nuclear disaster, the matter at hand is not only the radioactive material itself, but also its construction as social facts, knowledge, and public feelings (see for example, Morris-Suzuki 2014; Hecht 2012; Masco 2008), all bearing on the actual lives of ordinary people.

Without doubt, living in the ruins of nuclear risk is a demoralizing situation for all the parents involved. Operating within the discursive domain of “family’s choice,” familial norms—specifically the injunction that parents should protect children until adulthood (Allison 2013; Borovoy 2005; cf. Doi 1973)—fail to provide actionable options when clearly the most effective way to protect children is to relocate to a risk-free elsewhere. Because they could not do this, the parents I encountered felt stuck and immobilized in the face of unavoidable risk, both physically and socially, and were struggling to raise children with limited resources outside the officially designated evacuation zone. In such moral struggles, “striking a balance” (baransu o toru, or oriai o tsukeru), to keep living, was a phrase I heard time and again in interviews and conversations, as a practical way to live through unwanted nuclear risks.

Photograph of a child trying to catch an ant. — **Image description: A photograph showing a small child’s arm extended, reaching down to the paved ground with finger and thumb extended in an attempt to capture an ant crawling on the ground.**
**Caption: A three-year-old girl trying to catch an ant when allowed to play on the ground during a retreat for families from nuclear-affected areas.** Jieun Cho

Like hundreds of thousands of others, Kazumi fled to the home of a relative in another city in Fukushima Prefecture after the disaster. As revealed by data that had been published over the following months, both her home and that of her relatives were exposed to the fallouts of radioactive iodine, which was recognized as the cause of childhood thyroid cancers after the Chernobyl disaster by the International Atomic Energy Agency in 1996 (for more on knowledge production surrounding Chernobyl, see Brown 2017). After returning home under a new standard of permissible airborne radiation (note here that other material forms of radioactivity like soil are discounted), she found with the help of an NGO that parts of her living environment measured 100 times the radiation of a pre-disaster estimate. Because she did not know what this would mean for her children’s health, Kazumi searched for information about the effects of long-term exposure to radiation on children of her son’s age, only to become more frustrated. Although experts diverge on how or even if prolonged exposure in shadow zones leads to ill health constituting the need for relocation (Normile 2011), all agree that distancing from the source of exposure is the best way to remain safe—an option unavailable to her due to her husband’s local business. After years of failed attempts to move out, she was left with “nothing but stress” and a deep sense of guilt towards her children. Her sons, then entering puberty, had started retreating into their own worlds. According to her, she was “infectious,” spreading “depression” in her family.

Kazumi decided to break off from this state by no longer worrying about how to live somewhere else, and instead, “to actually live.” As a parent, this meant accepting the premise that insulating her children entirely from any kind of radiation exposure, let alone removing the exposure that had already happened, was impossible. A risk-free body is out of reach, but a reasonably healthy body may be realizable, depending on how this is defined and pursued. What she could do was to “strike a balance” by, for example, not stopping her children from volunteering to help struggling farmers in more contaminated areas. Kazumi evaluated the change in her own children as “learning to be proud as children of Fukushima (by helping farmers)”—something that made them “healthier.” The mind (kokoro) here was less an individual psyche, but more a state of well-being gained from ongoing interactions with others. I heard many other parents echo this emphasis on balance “between the mind and the body” as they struggled to find a livable definition of health while staying in or returning to Fukushima for work, aging parents, children’s education, etc. The mind and the body are interconnected, and the connection is facilitated through engagement with the outside world (which entails risks for further exposure). Might one call this a form of “life lived as itself”? That is, life as “actualities” in which the means (action) and ends (health) are “one and the same?” (Lambek 2010). From Kazumi’s determination that her children can live well and even “healthier,” I see less the prospect of ill health, but more a striving for actively inhabiting a place of one’s own.

What strikes me is the vitality Kazumi gained from her choice to “actually live.” If she was static in her previous, demoralized view about her own situation, her new normal life is forged by her own acts of balancing like giving permission to her children to do various things—what she calls “compromise” (dakyō) in a somewhat self-deprecating manner. These gestures in the everyday bring forth a worldview that in turn orients her to the everyday amidst nuclear risks. Forging a way forward like this has gotten Kazumi out of her house after a period of dormancy, both physically and socially, experienced by so many parents after the disaster who “caged” their own children (Bird 2013; Hanai and Lies 2014).

Such a form of life may be helpful in considering alternative approaches to the two extremes of reproducing the assumptions of false consciousness and placing relentless faith in scientific truth claims, as is often observed in political debates surrounding environmental uncertainty (see for example, Ahmann 2019; Hochschild 2016; Taussig 2019). In the bipolarized discourses of human rights, state failure, or scientific causality in post-Fukushima Japan, people like Kazumi appear to embody a position that is overdetermined by multiple trajectories of injustice. However, this emphasis on her victimhood says little about how Kazumi’s own choice leads her to new points of struggle in her daily efforts to live through the very conditions of overdetermination. From Kazumi’s determination that her children can live well and even “healthier,” I see less the prospect of ill health, but more a striving for actively inhabiting a place of one’s own (see for example, Allison 2013; Mahmood 2005), despite all in the life of Kazumi and her children that cannot be lived properly. At least this form of life she has chosen is livable; a child can have a future within this life, albeit outside the prospect of a pure body.

Jieun Cho is a PhD candidate in cultural anthropology at Duke University. Funded by the National Science Foundation and the Social Science Research Council, her dissertation research concerns middle-class families who are trying to raise healthy children while living amidst low-dose radiation in post-nuclear Japan.

Cite as: Cho, Jieun. 2020. “Family in the Ruins of Nuclear Risk.” Anthropology News website, April 29, 2020. DOI: 10.1111/AN.1397