This article examines the experiences of Bangladeshi patients and their families as they travel transnationally within Asia for medical care. I explain how failures of biomedicine in Bangladesh feed into idealized expectations of care abroad. This medical imaginary is fueled by the hope that more expensive treatment in wealthier countries will result in better care, and it is sustained by the way the medical tourism industry operates and the way Bangladeshi patients and their families make choices and engage in the doing of care abroad. A detailed case study of a Bangladeshi cancer patient’s prolonged care in Singapore illustrates the tensions and ambivalences in the quest for the best treatment. These tensions are exacerbated by the linguistic, monetary, and emotional challenges faced in traveling back and forth between countries. While patients feel at times betrayed by experiences of care that do not meet their expectations, they also feel compelled to carry on. I capture this dynamic in the term rhythms of care, understanding these as the way the medical imaginary shapes care practices that become a scaffolding for hope to be maintained and further travel to be undertaken. I also reflect on how I become part of these rhythms by acting as the family’s interpreter as they navigate health care in Singapore.
Rashida was in her late thirties when she was first diagnosed and treated for breast cancer in Bangladesh. Twenty years later, a swollen foot prompted her to get an x-ray at a well-known government hospital for diabetes. They told her that she needed to get a biopsy to check for cancer. At an additional visit to a private hospital in the capital city of Dhaka, doctors recommended that she also get a CT scan, which showed that the cancer had come back, this time in her hipbone. Rashida and her family decided to confirm the diagnosis in Singapore and get treatment there. They went to an office in Dhaka with representatives from hospitals in Singapore. The hospital agent sent Rashida’s CT scan to a private hospital in Singapore, promising that it would take just over a week’s time to get an appointment. The estimate for the treatment cost was around 20,000 Singapore dollars (SGD),1 not including the flight and lodging, and SGD 4,000 per chemo treatment.2 Rashida’s sister had previously undergone cancer treatment in Singapore, which influenced their trust in the hospitals. Rashida’s son Farooq explained,
My aunt came here. Everyone says that if we come to this hospital in Singapore it is good, especially for cancer. Number one. The best in the world . . . you know lots of people from Bangladesh come here because they know it’s good. People like us come here so that we don’t fall into a worse situation. Twenty-one years ago Ma had cancer in her breast and eventually had a mastectomy. They keep telling us not to worry, but we do. We came here for the best treatment. 3
In January 2016, when I met Rashida and her son Farooq and daughter Salina (both in their late twenties), they had already been traveling from Bangladesh to Singapore for more than a year for tests and treatment for Rashida’s cancer. This middle-class family is among the thousands of Bangladeshis who travel abroad every year for medical treatment. Farooq’s explanation of why the family travels to Singapore and what they’re looking for (“the best treatment”) sets up the narrative of many a medical journey: expectations of health care abroad tap into an imaginary that “energizes medicine . . . [as it] circulates through professional and popular culture”(Good 2007: 364). These and other medical travelers imagine biomedical care abroad as something highly positive, promising a quality of care unattainable in their own countries (Inhorn 2017; Kangas 2002; Song 2010; Whittaker, Chee, and Hong 2017; Smith 2015). Meghann Ormond (2015) describes such journeys as “temporary exits” that patients make because of the inadequacies of their own health care systems—these medical travels are a social phenomenon with specific meanings and politics in both sending and receiving countries.
In the past two decades, traveling for biomedical care has become more accessible for people from all socioeconomic backgrounds and regions across the world. Privatization and competition, the globalization of regulatory regimes, cheaper air travel, the rise of the internet, and the global movement of people, ideas, and capital have all contributed to this (Chee, Whittaker, and Yeoh 2017; Inhorn 2015).4 Hospitals that cater to international patients are “spaces of connectivity” where technologies, patients, doctors, agents, and medical expertise intermingle (Pordié 2013; Kaspar and Reddy 2017). While medical travel is perhaps most dominantly associated with the movement of patients from the Global North to the Global South (Turner 2007; Hazarika 2010) – Thailand and India in particular – in fact, the bulk of medical travel is intraregional, between countries in the Global South (Connell 2015).5 Indian patients who fly to Dubai for reproductive treatments (Inhorn 2015) and Indonesian patients who fly to Singapore and Malaysia for routine checkups and high-tech biomedical treatments (Ormond 2013) illustrate evolving consumer behavior in health care as much as they show uneven distribution of expertise and services.6 As one observer writes, “The growth in transnational health care exemplifies an industry that is increasingly privatized, competitive and consumer-oriented” (Connell 2015: 399). These “patient-consumers,” typically without the advantage of a medical background, have to navigate a multitude of options while trying to make sense of an overwhelming amount of information about various treatments (Bell et al. 2015). International border crossings, histories of regional connections, and complicated social networks influence patients’ decisions to journey abroad for health care (Chee, Whittaker, and Yeoh 2017; Huang, Yeoh, and Toyota 2012; Ormond 2013; Whittaker 2008; Whittaker, Chee, and Hong 2017). Equally, in the choice of where to go, especially for interregional medical travel, ideas of care and aspects of identity (religious, national, linguistic, historical) play as large a role as cost considerations do (Sobo 2009; Kangas 2002; Crooks et al. 2011; Sengupta 2011; Whittaker and Chee 2015).
This article contributes to ethnographic accounts that document the realities, hardships, and “abject suffering that underlies much, if not most, medical travel” (Inhorn 2015: 13). According to Beth Kangas (2010: 357), “ethnographic fieldwork can reveal ways that ‘care’ takes on new meanings and obligations in today’s interconnected world when consciences cannot settle for what is available locally.” I am interested in understanding how medical travelers navigate the frustrations and disappointments related to the medical care they receive abroad. I want to trace how such experiences intersect with what Mary-Jo DelVecchio Good (2007: 364) calls a medical imaginary, referring to the way “affective and imaginative dimensions of biomedicine and biotechnology envelop physicians, patients, and the public in a ‘biotechnical embrace.’” Good’s conceptualization draws from the oncology culture in the United States, where patients are willing to make great financial and emotional investments in unproven, risky, and toxic medical treatment in the hope that it will be beneficial. The promise of new technologies or treatments “sparks the medical imagination and drives the political economy of hope” (367). The medical imaginary gives us a way to think about how governments and the medical industry invest resources in the political economy of hope, which in turn influences patients’ subjective experiences of medicine by cementing trust in medical possibilities.
In the context of international medical travel, the medical imaginary and political economy of hope extend beyond national and cultural boundaries to create a global medical imaginary. In his work on medical travel from mostly Western countries to India for experimental stem cell therapy, Amit Prasad (2015: 139) illustrates how patients are often ambivalent about their experiences because of the uncertainties and contestations bound up with these “transnational journeys of hope.”7 In particular, patients struggle ideologically with multiple regimes of truth (ethical, juridical, cultural, biomedical) as they navigate their way through the changing fields of health care and technoscience while crossing geographic territories. He argues that it is the transnational dimension of medical travel that deterritorializes the discourses and practices of a supposedly stable nation-state-centered political economy of hope. In her use of the term biotech pilgrimages, Priscilla Song (2010) highlights the material and symbolic aspects of transnational medical travel for patients who travel to China for experimental stem cell treatment. These journeys are often experienced as expressions of faith and trust, which are “intertwined with technology, travel, and the political economies of healthcare and medical research in a global era” (385). The shared experiences of medical travelers can become “collective journeys of the imagination” (397). These studies discuss how understandings of trust and truth about the efficacy of medical treatment give meaning to experiences of medical travel that are often filled with hope as well as feelings of ambivalence.
This article builds on this scholarship by exploring how a transnational imaginary of promise and hope associated with medical treatment abroad plays into dilemmas of everyday choice relating to the care of traveling patients. What do patients do in situations that draw them into complex deliberations about continuing long-term care abroad? How do families make decisions about further treatment and repeat journeys when things do not unfold as hoped or expected? A focus on rhythms of care links decision making about medical care to an imaginary of promise and hope associated with treatment abroad. The word rhythm usually evokes the musical sense of something regular and repeated. My use of the term is more similar to Haili You’s (1994: 363) explanation that “the essence of rhythm is not merely the perceived order (or pattern) of repetition (recurrence) of something; it is the demand, preparation and anticipation for something to come.” You’s goal is to develop “an anthropology of rhythm” (361) that medical anthropologists can use to better understand the moral contexts of illness experiences and healing systems. This understanding of rhythm connects experiences of illness and healing with experiences of time. I argue that understanding medical travel in terms of rhythms of care helps provide insight into the practices and sense making that allow hope to be maintained despite setbacks, frustrations, and differences from imagined expectations. For Rashida and her family, their preparations, expectations, and demands for “the best treatment” are what drives them to continue traveling to Singapore, creating a rhythm that renews and extends their investment in the promise of care abroad.
Beyond motivations involved in initial decisions to go abroad and evaluations of medical travel after the fact, my analysis thus considers the complicated and ongoing choices about medical treatment abroad made over an extended period of time, as well as the way care is imagined, experienced, and arranged for along the way. My intention here is to connect the overlapping layers of the political economy of health care to personal relations of care. I want to map the ambivalence and the suffering produced by a transnational political economy of hope that casts medical travelers as consumers who engage health care options as a matter of individual choice. As Annemarie Mol (2008) has argued, ensuring patient choice is not necessarily the best premise on which to organize relations and responsibilities between health care professionals and patients. The political economy of medical travel, however, strongly favors that mode of organizing, making patients responsible for choosing among available options and for dealing with the consequences of these decisions. Then again, the promise of care abroad and families’ often deep investments and commitments in securing care for loved ones also intensify the pressure on health care professionals, who are thus also enveloped in this “biomedical embrace.”
Rashida and her family’s experiences cannot represent the multitude of Bangladeshi patients who travel to Singapore, but they can give insight into the complex negotiations about medical treatment that long-term patients and their families make on an everyday basis. I explore how Rashida and her family often get caught between their understandings of care as equated to making the right choices and care as acts of concern for patients. Expectations about the outcomes of care and about feeling cared for by doctors, nurses, and other hospital staff play a part in the medical imaginary of transnational care. Bangladeshi patients I spent time with, including Rashida’s family, often use the word bebohar to talk in evaluative terms about the care they receive. Bebohar refers to behavior, and patients use the term to describe the attitude and actions of doctors and other medical staff during medical treatment. In the context of Bangladesh, there is a difference between the descriptive definitions of care as jotno or chikitsha sheba and words like bebohar, which describe experiences and expressions of care in terms of the way a person treats another person.8
In what follows, I first discuss how for many Bangladeshis, a lack of faith in biomedicine at home feeds into an idealized imaginary of biomedical care abroad. Next I describe how Rashida and her family struggle to have their needs met in Singapore; particularly how linguistic, monetary, and emotional challenges complicate decisions about what to do in the search for the best care. Finally I show how Rashida’s care continues despite frustrations about unmet expectations, as rhythms of care extend the hope promised by the medical imaginary. When patients like Rashida feel that they need to keep going abroad, rhythms of care emerge from the complex ways that political economies of health care intersect with realities on the ground: the back and forth of travel, of earning and spending money, of enduring cycles of chemotherapy, and of designating trustworthy others.
2 Imagining Care
Rashida and her family travel to Singapore for medical treatment because they do not trust the health care system in Bangladesh where they consider biomedical treatment to be less concerned about patient care and more likely to fail. They live in the capital city of Dhaka, which is the hub of specialized biomedical care in Bangladesh, including government and private hospitals. As a middle-class family in an urban area, they have more options than most Bangladeshi families. For Rashida’s family and for patients from all socioeconomic backgrounds, the structural problems with health care in Bangladesh condition their experiences of medical care at home. The provision of health care in Bangladesh is rooted in the inadequate development of a public health system and is more recently influenced by the rapid expansion of private health care facilities. As Good (2007: 366) reminds us, “Alternative stories, misuses and failures of medicine’s cultural power and possibilities, are also part of the traffic in the medical imaginary.” I explain how experiences and stories about the failures of care at home become part of a medical imaginary that idealizes medical care abroad.
2.1 Failures of Care at Home
Bangladesh inherited a public health system that was initially set up during British colonization. After independence from Britain in 1947, the territory of present-day Bangladesh became East Pakistan. The Pakistani government expanded the public health structure until Bangladesh gained independence from Pakistan in 1971. The postcolonial government of Bangladesh was not able to successfully construct a welfare state that provided for the well-being of all of its citizens and there was never a widespread distribution of services by the government (Gupta 2012). Moreover, the services that are provided by government health care facilities do not always fulfill their policy proscriptions.
In Bangladesh today, public, private, and nongovernmental (NGO) facilities all deliver health care. The public health structure is administered by the Ministry of Health and Family Welfare and is organized into a hierarchy of facilities including medical college hospitals at the national level, general hospitals at the divisional level (7 divisions), 64 district hospitals, health complexes in each of the 522 subdistricts, health and family welfare centers in the 4,576 unions, and community health centers at the village level.9 The influence of international donors and aid organizations have left their mark on the structure and services of public health, where half of the divisions of the Ministry of Health focus solely on family planning and population control (Osman 2004). The government spends around 3.5 percent of the gross domestic product (GDP) on the public health sector and a large portion of health care expenditure is paid out of pocket by patients (Adhikary et al. 2018).10 The “privatization of the state” (Leve and Karim 2001) in Bangladesh characterizes the shift of public services such as health care from government institutions to NGOs and other private entities. The cost of health care for citizens has increased with the proliferation of private health care ventures across the country, including commercial hospital chains, pharmacies, and diagnostic centers.
A recent study shows that Bangladeshi patients who live in the divisions of Rajshahi and Sylhet think that the public health sector offers a low quality of service and are more satisfied with private health facilities because they provide better cleanliness, privacy, and interpersonal communication with patients (Adhikary et al. 2018). In Dhaka, the largest city in Bangladesh, with the most hospitals, surveys of patients show that they are more concerned about the service orientation (bebohar) and the quality of care (shebar maan) in both private and public hospitals than about the cost. The inadequate nursing care in Bangladeshi hospitals and the lack of proper training and behavior by many nurses also impacts patients’ satisfaction of care (3).11
To make matters worse, many public sector doctors are not available in government hospitals and clinics because they spend their time in private practice, where they earn more money. The government has acknowledged the problems of the public health care delivery system such as empty posts in rural areas and government doctors who focus predominantly on their private practice. Patients’ perceptions of the poor quality of the public health sector have also contributed to its underutilization—use was as low as 30 percent in 2004. Meanwhile, the utilization of private health care services has increased. In 2003, 70 percent of patients seeking medical care in Bangladesh were treated in the private sector—a trend that has continued to rise (Andaleeb, Siddiqui, and Khandakar 2007).
Doctors often become a symbol of their medical system and nation. Catherine Smith (2015: 286), in her ethnography of health care in Aceh, Indonesia, reports how the figure of the local “arrogant doctor” has “come to signify the pain and suffering of a history of violence and state neglect [in Indonesia], while ‘friendly Malaysian doctors’ [abroad] come to signify a new, perhaps utopian political world that could exist without pain and suffering.” In Bangladesh, patients often describe doctors as ghinna—signifying a greedy nature with economic motivations to practice medicine. Many Bangladeshi patients I talked with see commercialization as the root of the health care problem because it corrupts the ethics of the medical profession and negatively influences the practice of doctors in both the public and private health care sectors. These trends are reflected in a common occurrence known as “cut practice,” which is when doctors get a cut of money if they send patients to certain labs and hospitals. Other patients describe the need to bribe everyone with baksheesh (a small sum of money) as the way to get anything done. As one patient in Dhaka shared with me, these features of health care are seen as failures and “those in our country who are rich or who have money, they don’t want to get treated in Bangladesh because of the business aspect of treatment.” There is a general lack of trust and bishash (faith) in doctors in Bangladesh. Stories of misdiagnosis circulate among patients and many patients are not confident that technicians properly conduct and read their lab tests. Whether the misuse of technology for diagnosis is intentional or not, patients interpret it as a sign of the lack of care that medical practitioners in Bangladesh have for them.12 Others complain about the lack of medical supplies and infrastructure or suspect the overuse of technology is a way for doctors, hospitals, and labs to make money. For cancer care, for example, there is a shortage of hospital beds, radiation therapy machines, and chemotherapy drugs (as well as trained oncologists and radiation technologists) (Hussain and Sullivan 2013).
A few patients pointed out to me that the situation is complicated, because there are multiple sides to it. Yes, many Bangladeshis travel abroad to get better care, but that does not mean that all medical treatment in Bangladesh is bad. Instead, they cite the high population density of Bangladesh and the huge number of patients as another reason that it is impossible for doctors to provide good treatment to all.13 As one patient questioned, “How can any doctor see seventy-five patients in a day and still give good care?” There are well-known doctors in Bangladesh who are qualified and esteemed, but it is hard to get access to them without waiting a long time or having a connection through personal networks.
2.2 Better Care Abroad
There is a sense in which Bangladeshis invariably translate “abroad” as “better.” This concern about getting the best care influenced Farooq and his mother Rashida’s decision to seek treatment in Singapore. It also influences others. Bimal Kanti Paul (1999: 680) refers to this phenomenon as “by-passing national health care.” He first observed this trend twenty years ago in Bangladesh among wealthy and well-educated residents of the capital city of Dhaka. At that time most of the medical travel was to India and it had become a status symbol among the wealthy. Now, thousands of Bangladeshis from all socioeconomic levels travel to India for medical treatment, but it is predominantly upper-middle-class and elite patients who travel to Bangkok and Singapore for costlier treatment.
Bangladeshis often travel abroad to access medical technology and specialized treatment. It is common for patients to travel to India and Singapore to have lab tests repeated, to get an additional biopsy done, to have surgery, or to continue treatment (especially for chronic conditions). Other patients, like Rashida, want to confirm a diagnosis, whether cancer, heart disease, or epilepsy. Bangladeshi patients abroad carry their amassed medical files around the hospital and town. Rashida’s medical files, including x-rays and plastic sheets of scans, were in a large plastic bag that became too heavy to carry. In the hospital, her daughter Salina would squeeze the bag in beside her mother on the seat of the wheelchair.
Traveling Bangladeshi patients emphasize the better care that they receive from hospital staff in countries other than Bangladesh. There is a perception that doctors abroad are not solely interested in increasing their social status and material wealth but also care about patients. Patients say that these doctors have good bebohar because they spend time with them, treat them well, and diagnose their conditions correctly. One middle-aged woman in Dhaka told me that in other countries “people are very attentive and have a good manner of speaking with us.” Despite the cumulative higher cost, most patients I talked with in Dhaka were happy with the care they had received abroad. Such stories of successful treatment propel the medical imaginary that circulates between patients and inspires more transnational journeys for medical treatment.
The exact number of patients traveling for medical care is hard to calculate because the numbers are not publicly available. However, the media estimates that more than 300,000 Bangladeshi patients travel abroad every year, with the majority traveling to India.14 It is easier to travel by train or bus to India than to travel to Thailand or Singapore, which are accessible only by air. These estimates seem low, considering that one hospital in India that I visited had 110,231 Bangladeshi outpatients and 4,926 inpatients in one year (2015–16), which amazed me. In the early 2000s, various Thai and Singaporean hospitals opened reservation offices in Dhaka, where the majority of their potential clientele lives. These hospital offices estimate that between 2,400 to 3,600 Bangladeshi patients travel to each of their hospitals every year.
The governments of many Asian countries have been supporting an increase in the medical tourism industry as a way to generate revenue (Ormond 2013). Figures from the Singaporean Ministry of Health report that around 36,000 nonresident foreign patients received treatment in Singapore hospitals in 2011 (Star Online 2013). Most of these patients visited private hospitals, such as Raffles Medical or the Parkway hospitals, especially Gleneagles (Chee 2010). Foreign patient numbers seem to have peaked by 2011–12,15 but even in 2015 overseas patients were estimated to account for 20 percent of the revenue of private hospitals (Hock 2015). Although it is hard to find exact numbers, reports estimate that patients from Bangladesh are the third largest group of foreign patients to seek medical care in Singapore (Star Online 2013). The media reports that although Singapore has lost some medical business to cheaper Indian and Malaysian hospitals,16 it still benefits from its 2006 ranking by the World Health Organization as the “best healthcare system in Asia” (Teo 2006) and its reputation for “state-of-the-art quality care” (Star Online 2013). Singapore, then, does not compete on price but promotes its medical facilities on the basis of highly skilled practitioners and advanced technology (Chee 2010). The phrase written on one advertisement for a Singaporean hospital that I saw in Dhaka encapsulated the medical imaginary of Singapore: “Technology. Expertise. Agility. Care. With you every step of the way.”
When I asked Rashida’s children why they brought their mother to Singapore for treatment instead of to India, they said India is no different than Bangladesh. The medical imaginary of traveling to Singapore marked this middle-class family’s aspiring class status, akin to what Kangas (2002) observed about familial duty, social capital, and status informing the travel of Yemeni patients to Jordan. In Bangladesh it is expected that adult children take care of their parents as a moral duty, which is often expressed in religious terms. Securing the best medical treatment is a way to help fulfill that duty. For Muslim families (like Rashida’s), traditionally it is sons who carry on the lineage and celebrate funeral rites to set their parents’ souls free (White 2012). Therefore, sons often take a lead role in providing and securing care, while daughters are married off into other families. However, these norms are shifting—as we will see in Rashida’s situation, where her married daughter takes on as much responsibility for her care as her son does.
3. Doing Careful Research
To tell Rashida’s story of cancer care, I use a narrative style that is a way of sharing how people live and cope with different diseases. As Mol (2008: 88) explains, “Powerful stories work by invoking people’s imagination, empathy and irritation . . . [and are] likely to be a way of raising ever more questions.” Most anthropological research on international medical travel relies on interviews to document patients’ illness narratives (Inhorn 2017; Smith 2015) or draws on blogs, websites, and books written by patients (Song 2010; Prasad 2015). It is not easy to access the intimate and often private interactions between patients, family members, and hospital staff. My involvement as an interpreter for Rashida’s family between January 2016 and January 2018 allowed me to witness these interactions as they unfolded, thereby answering Andrea Whittaker’s (2008: 284) call for “a micro-level analysis of the personal experiences of medical travel.” I was not just an observer because I participated in caring for Rashida and her family through my language translations and emotional support. I also accompanied Rashida and her family into spaces outside of the hospital and at times followed up with interviews.
My own interest in documenting this “micro-level” doing of care emerged from the accumulated stories that friends and acquaintances told me about their medical travels during my prolonged trips to Bangladesh over the past eighteen years. This study is part of a larger ongoing project about the transnational medical travel of Bangladeshi patients to multiple countries in Asia. The research in this article is based on participant observation and in-depth ethnographic interviews conducted from 2015 to 2018, with over forty Bangladeshi patients who traveled abroad for medical treatment. This broader research informs my findings, but in this essay I focus on Rashida’s long-term medical treatment in Singapore for over two years.
When I met Rashida and her family in Little India—an ethnic neighborhood in Singapore that is known for shops, restaurants, temples, mosques, and hotels that cater to South Asians—I thought that I would only interview them about their experiences and stay in touch.17 I had not planned on becoming an English-Bengali interpreter for them. Rashida and her family knew that I was interested in helping them because of my research, and during our first meeting, Farooq asked me to write a newspaper article to warn other Bangladeshi patients of the difficulties they had encountered. After I became involved in Rashida’s care, we talked less about my research and my focus shifted instead to problem solving with them. They relied on my help but knew that I had teaching responsibilities, and they would try to schedule medical appointments at times when I was free. Despite my time constraints I also wanted to continue helping them because I had become close to them, felt responsible for Rashida, and also because my role gave me an intimate entry into the struggles they encountered. These struggles, and the micro-level narrative of patients’ experiences that makes them visible, allow us to understand how the larger structures and imaginary of transnational medical care impact care in practice.
4 What to Do? Dilemmas of Choice
In the months after we first meet, Farooq and his family feel that the treatment at the hospital in Singapore is not improving his mother’s situation and that what they considered to be good care had deteriorated for multiple reasons. After the initial detection of cancer in Rashida’s lungs, Farooq says the oncologist in Singapore told them not to worry and to do a low dose of chemotherapy. It is this decision that upsets Farooq the most. He feels that the doctor did not provide the best care for his mother and that the doctor should have given a high dose of chemotherapy for her then. Rashida and her family expected care abroad to improve Rashida’s situation. As patient-customers, they are engaging in a market transaction that promises a means to an end—pay for the best care and you will get the best results. But because of care’s unpredictable nature, the medical imaginary in which they invested does not translate into reality. This prompts in them a sense of betrayal and makes further decision-making rife with tensions. The need for such decision-making crops up during many unpredictable moments throughout her care. Rashida and her family want to secure the best treatment. Sometimes their decisions improve Rashida’s situation, but at other times they lead to feelings that her care is inadequate. In the course of Rashida’s treatment in Singapore, she and her family struggle to make sense of the tensions between the decisions they make to pay more for better care and the actual quality of care they experience, including the bebohar and personal relations of care. At times they equate care with having a choice, and at other times they want medical professionals to make choices for them in the best interest of Rashida’s well-being. These tensions are exacerbated by the linguistic, monetary, and emotional challenges they face as they travel back and forth between countries.
4.1 Linguistic Concerns
Language problems complicate Rashida’s care on multiple occasions. Although educated and middle class and able to read and understand some English, Farooq and Salina have difficulty speaking English. They feel that their inability to communicate well with the doctors influences the quality of care. At the hospital, Bengali interpreters are available to provide the technology of language to facilitate good care. However, the hospital interpreters are mostly from West Bengal (in India) and Farooq feels that they see themselves as more elite and educated and look down on him and his family. As Farooq says, “Just because we can’t speak English, it doesn’t mean that we aren’t educated. I’m an engineering graduate and my sister passed her course as a doctor in medicine.” He becomes concerned that the hospital interpreters do not always translate everything or shorten translations into what he and his family should do instead of giving all the details. Because of these problems, they stop using the hospital interpreter and I am drawn into the care of Rashida.
The family ask that I go to the hospital with them to translate and talk with the doctors. They feel that my presence will ensure better care, telling me, “We humbly request that you go with us as our appa [older sister]. We don’t understand what’s happening and it’s not clear. You will be able to understand everything better and [you] can explain it to us.” After visiting the hospital with them, they tell me that the doctors treat them better with me there. This is perhaps because the doctors give more time for me to translate between Bengali and English and the doctors know that I understand what they are saying. I can also make sure that Farooq’s concerns are clear to the doctors. I end up translating for both Rashida’s family and for the doctors and medical staff for two years.
These translations involve more than what is literally said, because I also translate emotions, expectations, and frustrations. Rashida’s family does not feel as though the hospital interpreter is invested in the process because the interpreter shows little concern about them personally. Meanwhile, I take the time to visit them in their hotel and talk to them about their family and their frustrations in both Bangladesh and Singapore. I am not a part of the hospital system so they see me as on their side, as the only one to help them. Throughout my time with Rashida and her family, I would often ask myself questions about the ethics and limits of relationships—the kinds of questions that ethnographic researchers face when we become involved in other people’s lives. I had no training as a medical interpreter and had not expected to find myself in such a role. My involvement with Rashida’s care happened in the midst of in-the-moment assessments where I figured out what I could do to help and practically support the family during Rashida’s treatments in Singapore.
4.2 Monetary and Emotional Concerns
Some people working in the corporate sector or in top government positions in Bangladesh have insurance or other schemes to help cover the cost of expensive treatment in Singapore and Thailand. Yet most Bangladeshis, including Rashida’s family, have no medical insurance or government/employee benefits to help pay for medical treatment. They borrow money or sell off land or other assets, such as gold wedding jewelry or cows, to pay for medical treatment abroad. The huge expense for “VIP treatment” in Singapore—not helped by the low exchange value of the Bangladeshi taka—makes the frustration all the greater.18 Rashida explains,
I came here [to Singapore] from Bangladesh to get better, because I can get good treatment here and thought that if I come here there will be a benefit. But I’ve fallen into a worse situation because they gave me low doses of chemo and the cancer increased. They told me that if I did this, there would be nothing for me to worry about, but since then the cancer has now spread to my brain. So what’s the benefit for me to come here? I could have gotten treatment done in Bangladesh. People say that treatment here is good, compared to Bangladesh where they don’t understand things, there’s not good treatment, nor good machines. We struggled so much to be able to come here to get better. We are just normal people, how can we find so much money to pay for this kind of treatment?
A few months after I initially met the family, we returned to a hotel in Little India after meeting doctors at the hospital. We are all sitting on the twin beds in the cramped hotel room. Salina echoes the conflict between the expectations and reality expressed by her mother. “We came here to get good treatment and to control the cancer. We’ve been doing treatment here for almost a year and a half and what has been the benefit?” At this point Salina’s voice has an edge to it and she is exasperated and angry. Farooq, her brother, looks over at their mother who is sitting beside me on the bed, listening to them narrate the story, and asks if she is feeling sad and tells her to smile. Salina says that her mother is in pain, that it is a reaction to the chemotherapy and hopes that it will go away. Farooq insists that cancer treatment is even more expensive in Singapore than in the US. “We spent so much money to come here and struggled so much, in order for her to get better, but there hasn’t been any benefit for her treatment because the cancer has only gotten worse.” The medical imaginary of better care in Singapore is not becoming a reality.
Rashida’s family holds on to the hope that spending more money in Singapore will translate into better care. The tensions inherent in this orientation are revealed when Farooq has to decide how to go forward with the treatment for his mother’s brain tumor. The options seem to be to do either a targeted radiation on the detected tumor, or a more general radiation on the whole brain. I feel an ethical responsibility to convey the explanations and concerns of the family to the doctor and vice versa. We meet with the radiologist, Dr. Z, to discuss possible treatment options for Rashida.
In the course of our discussion, Farooq mentions that he does not understand why the previous doctor administered a low dose of chemo and not a high dose after the initial detection of cancer in his mother Rashida’s lungs. Farooq is frustrated and emotional, almost yelling at Dr. Z while shifting back and forth in his chair. He mentions this so many times that eventually Dr. Z raises his voice slightly and calmly insists that he cannot answer that question because he was not the doctor treating Rashida at that time. He says that Farooq needs to ask the doctor in question, not him, and then looks Farooq in the eye, saying, “Don’t play the blame game with me.” Dr. Z is quite calm and patient as he continues to explain things to Farooq and me, even though he can see that Farooq is agitated. Farooq seems to have lost all faith in this hospital after finding out that his mother’s cancer has spread to her brain. He wants to know how this is possible. Dr. Z tells me that there is no way to stop the cancer from spreading because Rashida had stage 4 cancer when she came to the hospital at the beginning. He explains that the cancer will never go away completely and that the goal is only to keep it under control and to “reduce the population so that it doesn’t cause too many symptoms.” Dr. Z says that the family needs to be realistic about what is possible, but asks me not to translate this in front of Rashida since it could diminish all possible hope that she might have.19
Later in the hallway of the hospital, I tell Farooq, in private, what Dr. Z said. He tells me that he knows this. . . that the treatment will only possibly prolong his mother’s life. Even so, he still cannot accept the treatment that the other doctor had done. Back in the doctor’s office, Farooq tells the radiologist in English that he only has one mother but the doctor has many patients, so they do not mean the same to him. Dr. Z starts to lose his patience with Farooq and maintains that he treats all patients the same and to the best of his ability. Exasperated, he continues, “I am not God and there is no way to cure the cancer, only to slow down the process and minimize side effects. This is difficult to accept and if all her cancer were to disappear, it would be a miracle.” Farooq is insistent that he came here for good treatment, for the best, and he does not feel like they are getting the best.
Farooq feels that Dr. Z, as a representative of the hospital, should take some responsibility for what he considers the botched decision of low chemo, instead of shifting the weight of what went wrong “onto the shoulders of the patient-chooser” (Mol 2008: xii). Above all he seems to want Dr. Z to pair his next-steps medical recommendation with a caring attitude. Emotion, desires, decisions, and attention all play key roles in caring attitudes (Collins 2015), and this bebohar is what Farooq wants from Dr. Z, who should, Farooq intimates, care about and seek active solutions to remedy the mistake of the previous doctor. Even though Dr. Z draws the boundary at treating Rashida—like all his patients—to the best of his ability, the medical imaginary of better care in Singapore influenced Farooq’s expectations of doctors not only performing the right actions but also having caring attitudes.
This tension between attitude and action can help explain why Farooq feels like the doctors do not care about his mother, even though they are administering technology and treatment. He connects it back to similar criticisms about medical care in Bangladesh, that many doctors only have a business interest in providing treatment and using certain types of medical technology. Farooq is now feeling the same way about the private hospital in Singapore, as if it were all just one big business for the doctors to make money, saying, “They are professionals. They are not treating it like a profession, but like a business.” That day alone it cost SGD 200 to consult the radiologist and a few hours later an additional SGD 300 to consult an endocrinologist.20 He and his family are spending a lot of money. In addition to the absence of the hoped-for treatment outcomes, unrealized expectations of bebohar compound their frustrations: they complain to me that they expect to see that money translated into simple reflections and actions of care such as doctors giving them handwritten notes about medicines, having the medical plan typed up for them, or even giving them a month’s supply of antiseptic pads for his mother’s insulin injections. At one point, I intervene by asking the hospital staff if they can type up the medicine list. They seem a bit bothered by my request, perhaps because I did not know what the normal procedure is at this hospital.
When presenting the treatment options, Dr. Z does not always explain the reasoning behind the treatment until I inquire and at which time he presents a choice. In this case, the options offered are radiation on Rashida’s whole brain versus a more intense radiation just on the brain tumor. Farooq wants to know what Dr. Z thinks is the best choice and wants him to make the decision, while also wanting to ensure that the best options are not withheld from consideration. The idea of a choice becomes a double bind for Farooq, who sees himself as responsible for deciding what ultimately happens, even though he wants Dr. Z, with his expert opinion and knowledge about the technology and the disease, to make the best decision for his mother.
Dr. Z explains that if they do a focused intense radiation therapy, it will cost an additional SGD 1,000 for the MRI.21 He says that he had not initially presented this option to Farooq because he was concerned that the cost would be prohibitive. This upsets Farooq even more—and he says that money does not matter, as long as his mother gets the best treatment. He feels like the radiologist is giving him worse options because they are cheaper and because the radiologist thinks that his family cannot afford the treatment. Later, Farooq decides that his mother should first have an MRI before he makes a decision about her radiation treatment. Dr. Z suggests that they return to Dhaka for his mother’s MRI because it is cheaper there, and then return to Singapore for the radiation treatment. This suggestion also offends Farooq, who tells Dr. Z, “Why would we do that . . . we are already here in Singapore and paid all this money to come here?” Dr. Z thinks that he is being helpful, but Farooq takes his suggestion as a sign that he is not interested in providing good care for his mother and as an insult to his economic status.
At the end of this particular visit to Singapore, Farooq no longer seems to be listening to what the doctors are saying. He thinks that the doctors are only interested in money and he no longer trusts them. In one of the last meetings with a doctor, he and his sister Salina speak to each other in Bengali in front of the doctor and they decide to play along with the doctor, even though their new plan is to go to Bangkok for further treatment for their mother, hoping that the care there will be better.
After spending eleven days at a hospital in Bangkok for a third opinion and a full body check, Salina returned to Singapore with her mother to continue the cancer treatment. Before she went to Thailand, Rashida had stopped her radiotherapy and chemotherapy because she was having such severe side effects. The doctors in Thailand suggested she get a biopsy of her lung tumor to find a chemotherapy treatment with a better match to her type of cancer. Salina felt burdened by having to make another decision about her mother’s treatment and sought more opinions from an additional private hospital in Singapore that charged even more than the previous one—over SGD 600 for two consultations.22 Salina was desperately seeking expert opinions to help her make the best choice about whether to go forward with the lung biopsy, but the difference in medical opinions left her confused about what decision to make. After making an appointment with a more senior oncologist at the same hospital that they initially visited in Singapore, Rashida continued her chemotherapy in Singapore for another year, until she died in Bangladesh in early 2018. Despite all the frustrations that they encountered in their transnational journeys before her death, Rashida’s family was determined to see her get better and for the rhythms of her care to continue.
5 Rhythms of Care
In the two years before Rashida’s death, the monthly travel to Singapore for chemotherapy generates rhythms of care that spread out across time and space. These rhythms encompass her medical treatment and the care provided by her family. They also include the very expectation that her well-being will eventually improve if they keep trying. It is this expectation that drives the repeated journeys and creates a semblance of order. This focus on the anticipation for what is to come means that the family is constantly preparing for Rashida’s next trip by saving up money to pay for the flights, hotels, and treatments.
Six months after I first met the family in Singapore, Salina takes over her brother’s role and she becomes the main decision maker for her mother’s treatment. Salina is married, but she is also a student and has more flexibility than Farooq to travel with her mother. She accompanies her mother on every trip for the next year and a half, while her two brothers (one married and one unmarried) and father stay home to work and earn money for Rashida’s medical expenses. Salina also feels more confident about making the treatment decisions since she is studying medicine in Bangladesh and she can rattle off all the complicated names of her mother’s drugs perfectly. We come up with a system for the time-limited appointments with Dr. H, the oncologist. Rashida knows only a handful of words in English, but Salina has a working knowledge of English. Salina tells me all the questions she has for the doctor in Bengali and I write them down in English. During the meeting, Salina leads, and I only intervene if she has trouble asking a question in English or if she forgets to ask something. I write down what the doctor says, and afterward I go over his responses with her because she often does not understand everything he said in English. Although Rashida and her family are frustrated at times by her care in Singapore, they tell me that they also encounter many medical staff (especially the chemotherapy nurses) who have very good bebohar.
Care activities emerge from these repeated journeys to pattern the daily life of Rashida and her family. These daily patterns are similar to rituals of care, which Felicity Aulino (2016: 93) describes as “the patterning and embodiment of habituated actions” and which she says give us an understanding of “what values people enact and how they maintain social worlds through the physical practices of providing for others.” This gives attention to what caregivers do and not just what they say. These patterns make up a “care time [that] can be enjoyable and rewarding, but also tiresome, involving a lot of hovering and adjusting to the temporal exigencies of the cared-for” (Puig de la Bellacasa 2015: 17). Rashida and her daughter Salina’s rhythms of care, involve regular flights and packing their bags with pills, food, dishes, and clothing. They always stay for two to three nights at the same hotel in Little India with a room that has a big window looking out over the neighborhood. As her body becomes weaker, Rashida starts to have trouble walking and enjoys lying in bed watching the bustling streets below. They eat the free hotel Indian breakfast in the morning and then usually eat other meals at a nearby Bangladeshi restaurant brimming with migrant workers. I also become part of their rhythms, expecting sudden phone calls or texts letting me know that they are back in Singapore. Rashida tells me every time that it is easier for them to travel to Singapore knowing that I am there, that she has someone in Singapore.
Once this rhythm of almost monthly chemotherapy treatment begins, it seems to give Salina hope that her mother’s cancer will get better, despite its terminal state. She and her family are constantly making preparations for the next treatment by saving up money and booking travel while demanding the best treatment from the medical staff who care for Rashida. These rhythms of care set a cadence that extend the hope of the medical imaginary despite setbacks and unmet expectations. During every appointment Salina focuses her attention on the numbers of the tumor markers from the blood test. Both numbers are much higher than the normal range, and at times one marker goes up and the other marker goes down. She interprets these fluctuations as good signs and Dr. H never says to stop the treatment. Instead, he recommends that Rashida complete more rounds of chemotherapy before doing another PET scan, which would more clearly show where the cancer is in her body. Meanwhile, I want to ask if it would be better for Rashida to stop treatment and be at home for the time she has left to live—but I do not know how to ask about her decline and impending death.
Dr. H does a physical examination of Rashida every time we meet. He talks softly about “quality of life” and managing pain, but I never hear him mention stopping treatment or beginning palliative care. Instead, his care involves tinkering with the medicines—trying one chemotherapy and if there is no positive change, trying a different one. Salina trusts him despite receiving unsettling news from another Bangladeshi cancer patient about the recent conviction of a prominent Singaporean oncologist. He was charged with “offering false hope” and had his medical license suspended for eight months. Because Rashida and her family hold on to the view that cancer treatment in Singapore is better than in Bangladesh, they continue to invest in the possibility that the treatment will extend her life. It is patients like Rashida and “those who suffer serious illness [who] become particularly susceptible to hope engendered by the cultural power of the medical imagination” (Good 2007: 364). However, the line between hope and false hope is often not so clear from a patient’s subjective point of view and their anticipations should not be dismissed as simply false hope (Prasad 2015).
Rashida is admitted to the hospital during her last visit to Singapore because she is very weak and has trouble breathing. She had been sick in Bangladesh, where doctors in two private hospitals in Dhaka treated her for pneumonia. Salina took her mother to the second hospital after the brash behavior of a doctor at the first hospital, who said “Niyejai [take her away]” because of her breathing problems. Salina was upset by the doctor’s bebohar—that he was not interested in treating her mother’s complex health problems and that he dismissed them both so rudely. Her Singaporean doctor, Dr. H., is shocked that her Bangladeshi doctors gave Rashida permission to board a plane. He recommends that she admit herself to the hospital in Singapore because she is too weak to receive outpatient chemotherapy. Dr. H is worried that Rashida will not be able to make the flight back to Bangladesh. On the plane coming to Singapore, they gave her oxygen because she was having trouble breathing.
Salina meets with a hospital financial counselor, who estimates the cost for in-patient treatment to assess Rashida’s lungs and improve her breathing at over SGD 15,000.23 The family has not planned for this huge expense. Salina is torn between the seriousness of the situation and the inability to pay that much money. She has only enough cash to cover the chemotherapy. It takes her four hours to make a decision, after discussing the options with her family in Bangladesh by phone. The hospital requires the payment of a deposit before the admission of a patient to the hospital. Salina pulls four credit cards out of her wallet to split up a charge of almost SGD 4,000.24 Even in this situation, she is still calculating how many days it will take for her mother to get stable enough to receive more chemotherapy. After four days of IV saline, oxygen, and nebulizer, Rashida receives chemotherapy before flying back to Dhaka.
The oncologist, Dr. H, thinks that Rashida’s breathing problems are probably a sign that the cancer tumors have increased in her lungs. Meanwhile, Salina is still holding on to the hope that the chemotherapy will stabilize the spread of the cancer and that they will be back in a month’s time for yet another round of chemotherapy. She is caught up in the overlapping rhythms of cycles of chemotherapy and back and forth travel that structures her movements and her anticipation for an improvement the next time. Rashida and her family are like other “biotech pilgrims” who “travel to great lengths and spend significant resources to find a high-tech means of deliverance from their bodily suffering” (Song 2010: 393). Their rhythms of care become a scaffolding that allows hope to be maintained despite repeated frustrations and differences from imagined expectations.
5.1 Limitations of Care
I am alone with Rashida in an expansive white hospital room during her final visit to Singapore. It is hospital policy and the law in Singapore to isolate new in-patients until lab tests for antibiotic resistant bacteria come back negative. This rule surprises both Salina and me because no one at the hospital admissions had explained this policy to us beforehand. Salina requested a bed in the cheaper general ward which is shared with two to three other patients. But, because of the rule, the head nurse makes Rashida shift to a single room while they wait for the lab results. This room is more than twice the price and more than they can afford. Salina is so upset that no one informed us of the policy beforehand that she threatens to take her mother out of the hospital. She is sleep-deprived, emotionally exhausted, and worries about her mother and the accruing medical bills. I manage to calm her down enough to call Dr. H, who says he will ensure that she pays the general ward price for the private room if the lab tests come back negative. However, one test comes back positive and she has to pay the higher price.
Rashida’s body has become slight and weak, with her face slightly puffy from the chemotherapy. She is not used to the frigid air-conditioning and feel chills despite the three hospital blankets covering her body and her red shawl wrapped around her shoulders and head. She has trouble walking and has to push the button on the side of the bed every time she needs her adult diaper changed. Salina comments that the nurses in Singapore have good bebohar and are more helpful and competent than the nurses she encountered in Bangladesh. When her mother was in the private hospital in Dhaka, the nurses there did not allow her to spend the night in the room, but here she can stay all day and night with her mother. She has given up her hotel room and sleeps on a couch in the family waiting room, sharing the space with a Malaysian family for three nights.
Rashida is not interested in eating much of the hospital food, so I bring them both some Indian curries and rice with extra pieces of chapati—Rashida’s favorite. She devours the meal and is happy for a change in the menu. Salina goes to pick up new medicines at the hospital pharmacy and I stay in the room. Luckily, the hospital has given permission for Rashida to continue taking medicines that she brought with her from Bangladesh. The same medicines are more than twice the price in Singapore. Reclining in bed, Rashida turns her head toward me and tells me how good her children are to sacrifice so much to pay for her treatment. She does not like coming to Singapore and wants to go home, where she is more at ease and can communicate in Bengali. But her children insist that she get treated in Singapore, so she obeys their wishes despite the struggle for all of them.
The hospital in Singapore says that Rashida’s bills have to be paid in full before she leaves the hospital, on what turns out to be her last visit. After seeing all the charges, Salina comments that this hospital hides charges to make money. For example, the cost of the PET scan is more expensive as an in-patient than as an out-patient. The nurses had also said that the ambulance service was free but there is a charge for it. We meticulously go over the hospital bills and Salina is able to successfully contest a few charges. When Salina asks if there is a payment plan option, the receptionist impatiently retorts, “This is not a public hospital. We don’t do that here.” In order to leave without paying in full, the hospital needs a guarantor in Singapore who is willing to legally ensure payment of the bills if there are any problems. The hospital staff looks at me when explaining this requirement. Salina has introduced me as a family friend. This becomes an awkward situation because it is not possible for me to financially guarantee the payment of the bills that are almost SGD 20,000.25 I also have a contingent relationship with Singapore as a postdoctoral fellow on a temporary contract, with a limited income. We ask for a break, and over coffee and pastries I explain to Salina that I am not comfortable with the situation. She understands and agrees. I feel that the hospital might only be pressuring her to find a guarantor because they saw me and think I can play that role. This is where we reach the limits of my capacity and of the helpfulness of my role as fictive kin. In this situation, Salina has more negotiating power without me in the room. This time she explains to the hospital staff that I am her interpreter and she cannot ask me to sign such a form. In the end the hospital let her mother sign as the guarantor of the debt. I do not know what happens now that her mother has died, and cannot bear to ask Salina how or if her family will ever pay what they owe to the hospital.
Rashida died just two weeks after returning to Bangladesh. She was at home, but taking oxygen around the clock. Usually Salina would replace her mother’s oxygen tank in the afternoon. However, on the day she died the oxygen tank unexpectedly emptied in the morning, much earlier than usual. Rashida died within five minutes, before they could get to the hospital to refill the tank. Salina felt an enormous amount of guilt for her mother’s death, but at the same time she was still in disbelief saying, “The doctor never said that she would die so quickly.” Salina knew that her mother would die eventually, but their rhythms of care had kept her going in the anticipation that she might still get better. For more than three years her everyday life revolved around caring for her mother: keeping track of her daily pills and injections of insulin to the belly, helping her bathe and get dressed, feeding her, giving her an arm to lean on as she became too weak to walk, and gathering the money from her family to prepare for the next trip to Singapore. In the end, it was the failure to access the simple technology of an oxygen tank in time that ended her mother’s life. A part of the system that Salina had unquestionably relied on ended their rhythms of care.
6 Concluding Concerns
Previous studies have shown us how the hope invested in transnational medical care is a powerful phenomenon, one in which patients invest financially, emotionally, and therapeutically. Traveling patients give meaning and make sense of their ambivalent experiences through ideas of truth, faith, and a sense of higher purpose (Prasad 2015; Song 2010). Rashida’s situation gives us an intimate account of what patients do when these ambivalent and uncertain situations are prolonged. We have seen over the course of Rashida’s treatment how her family’s trust in doctors and medical systems both builds up and falls away—patients can feel betrayed and frustrated when the medical imaginary in which they are invested does not materialize. And yet, the medical imaginary of transnational care also informs how patients and families make decisions over time, which become part of larger rhythms of care that are repeated in the anticipation that a patient will get better at the next turn. These rhythms of care act like a scaffolding for hope, despite setbacks, frustrations, and differences from imagined expectations.
This kind of detailed ethnography can “explicitly engage the views of local actors [and] provide insights into the ways in which the global dissemination of biomedicine and its specific local forms transform not only human bodies, but also people’s hopes and aspirations in ways that may well have broader repercussions for society at large” (Lock and Nguyen 2010: 5–6). Rashida’s story sheds light on the tangled interconnections between the medical imaginary of treatment abroad and the realities of transnational medical care. Bangladeshi patients blame their exclusion from good care in Bangladesh on the increasing commercialization of health care and a lack of trust in medical care due to the erosion of medical ethics. They contrast these perceptions of failure at home against a medical imaginary of idealized care abroad, usually in private health care facilities. Therefore, the failures of care in Bangladesh are also feeding into the privatization of health care across Asia, as hospitals compete for sick bodies to treat.
As Sobo (2009: 330) reminds us, the “subjectivities of the well-off as well as those of the disenfranchised merit examination, perhaps especially regarding how global markets affect people’s experiences of the local, the other, and health care consumption.” To understand care in the situations of medical travelers like Rashida, we have to acknowledge how their experiences of care and the burden of choice are often colored by many factors, including monetary, linguistic, and emotional concerns. Securing patient choice does not ensure good care (Mol 2008), and as we have seen in the case of Rashida and her children, that the double bind of choice and the many instances of decision making can be overwhelming and crippling, both financially and emotionally. There are also tensions among what good care means to the doctors, to Rashida and her family, and to me. The doctors were performing the actions of care by administering medical treatment; although Rashida and her family wanted to see these actions paired with good bebohar and improved health. I wanted Rashida to stop her medical treatment and to focus on the life she had left with her family, but this was not what her family wanted.
At times Salina and Farooq equated paying more money for care with accessing good care. They took extraordinary measures to prolong their mother’s life and expected the impossible: that she would get better. Maybe it was too hard for them to accept that all the sacrifices they made and the enormous debt they incurred would not help her get well. Over time, the stakes had been raised well beyond the aspirational choice for Singapore as a place for this middle-class family to access care. Farooq, in a dark moment, did not only equate Singaporean doctors with the ghinna doctors in Bangladesh—he said they are worse: “In Bangladesh there is a lot of churi [theft] of taka poisha [money], but here [in Singapore] they are stealing people’s lives.” Farooq and Salina brought their mother to Singapore because they thought it would prolong her life, which it did, but at what seems a staggering cost. Rashida’s children struggled to make sense of her care, wondering at times if it was worth it to keep traveling abroad for their mother’s treatment, investing all their money and risking their future economic stability. Perhaps their attachment to the possibility of hope in treatment abroad was a form of “cruel optimism” (Berlant 2011) because the medical journeys and rhythms of care in Rashida’s last years completely filled up the life she had left to live and consumed the lives of her children. Or maybe the political economies of transnational health care and health seeking conspire here in cruel ways with translations of filial piety and duty. That these are good children who stopped at nothing to honor and care for their mother is beyond any doubt, yet who was really served by the rhythms of care that governed this family for years and will likely reverberate for years to come is another question altogether.
I would especially like to thank Catelijne Coopmans for her care, encouragement, and insightful feedback for this article through its many iterations and drafts. She and the other participants in our workshop “Framing Technology and Care in Asian Contexts” helped me to develop the ideas that eventually became this article. Also two anonymous reviewers’ careful feedback was critical in convincing me to push my argument in interesting directions. Marjorie McNamara was a patient sounding board for the times when I was working through ideas. I also want to thank all the Bangladeshi families who openly shared their experiences about medical travel with me. Finally, I am grateful to the Asia Research Institute of the National University of Singapore (NUS) for enabling me to conduct this research during my postdoctoral fellowship and for supporting our workshop both financially and logistically.
This is a significant cost. In 2015, SGD 20,000 was equivalent to approximately USD 15,121 or BDT 1,177,081 (Bangladeshi taka). According to the World Bank, the average monthly income in Bangladesh in 2016 was approximately USD 117 or BDT 9,138. A middle-class salary is estimated to be USD 416 or BDT 35,166 a month. Therefore, the cost of cancer treatment in Singapore would be more than the yearly income of most middle-class families. See iresearch.worldbank.org/PovcalNet/povOnDemand.aspx and thefinancialexpress.com.bd/views/views/middle-income-population-slowly-running-out-of-puff-1541260569.
USD 3,024 or BDT 235,416 in 2015.
I use pseudonyms for the patients, family members, and doctors in order to protect their identity. I also do not mention the names of the hospitals where Rashida received treatment.
In 2010, there were an estimated 6 million medical travelers around the world—with a third of these patients traveling to Thailand and India. By 2020, the global medical tourism market is expected to be around USD 100 billion (Inhorn 2015: 12). These numbers are often unreliable because there is no systematic way to count medical travelers or the money they spend. Marketing companies also inflate both numbers, and governments and hospitals do not always make this data public (Chee, Whittaker, and Yeoh 2017).
Except when referring to the industry, I do not use the term medical tourism, because it evokes the idea that these trips are for pleasure and leisure. I follow scholars who are in favor of using more neutral terms such as international medical travel, transnational medical journeys, or medical migrations (Kangas 2011; Roberts and Scheper-Hughes 2011).
In Asia, the economic crisis of the 1990s stimulated the development of a medical tourism industry as a way to increase export earnings, which has encouraged the privatization of health care as a means to generate profit. Thailand, Singapore, and India have become hubs of the medical tourism industry.
Patients travel to this clinic from 140 countries around the world and some patients are from India. In Prasad’s (2015) article he focuses exclusively on non-Indian patients and in particular on the experiences recounted in the blog of an American woman.
Although I use the word care in this article, anthropological work has shown that the English word care does not translate simply into other languages or cultural contexts (see Van Hollen 2018; Aulino 2016). The Bengali word jotno, meaning earnest or careful attention, is the closest to the English word care. For example, jotno is used to describe the care of a mother for a child or taking care of oneself. Another word for care in Bengali is sheba. Sheba means serving, worshipping, or waiting on and can have a religious connotation, especially in a Hindu sense, when it can mean the service or worship of god. Chikitsha (healing or medical treatment) paired with sheba implies a caring kind of medical treatment or serving another person through healing. Chikithsa sheba, shastho (health) sheba or even the English word treatment are the most common ways to refer to medical care.
There are also many practitioners of traditional medicine and religious-based healing throughout the country, especially in rural areas.
The average GDP spending on health care for “least developed countries” is 4.31 percent. High-income countries spend an average of 12.53 percent of their GDP on health care. Some examples are Japan (10.93 percent), Canada (10.53 percent), the UK (9.76 percent), and the US (17.07 percent). India spends a comparable low amount of 3.66 percent. Other low-income countries like Nepal spend 6.29 percent and Indonesia spends 3.12 percent. These numbers are from a 2016 World Bank report. See data.worldbank.org/indicator/SH.XPD.CHEX.GD.ZS.
The nursing profession in Bangladesh is not very professionalized and nurses are stigmatized because of the work and do not receive good pay. These problems have contributed to the shortage of nurses in Bangladesh. In Singapore the nursing profession is more professionalized and better paid. See Amrith 2017 for an in-depth study of Filipino nurses in Singapore.
Patients express this lack by saying there is no good treatment (bhalo treatment/chikitsha nai).
With a population of over 160 million in the space of 56,977 square miles, Bangladesh has one of the highest population densities in the world.
The medical tourism industry is growing in Asia, but surprisingly not in Singapore. From 2005 to 2009, the Singapore government supported medical tourism through a now defunct program called Singapore Medicine, which attempted to establish Singapore as the region’s leading medical hub. Singapore had $832 million in revenue from medical tourism in 2013, a 25 percent decline from 2012 (Huang 2015). Some private hospitals in Singapore want more government support because of the declining numbers of international patients (Estioco 2016).
Malaysian hospitals, where private medical treatment is offered at less than half the Singapore price, have recently started targeting Bangladeshi patients and have even partnered with Malaysian Airlines to give them a 30-percent discount on airfare to Malaysia (Palma 2016).
This neighborhood caters to thousands of Bangladeshi migrant workers as well as Singaporeans of Indian descent. Many Bangladeshi patients prefer to stay in this area because there are cheap hotels and restaurants that serve Bangladeshi cuisine.
VIP stands for very important person. This is a common English term used in Bangladesh to refer to elite, powerful, and rich people in the country.
Patients interpret the act of disclosure about illness details differently depending on the cultural context. For example, in South India it can be seen as a symbol of care to withhold or disclose information about cancer treatment to a patient depending on the situation and patient preference (Van Hollen 2017). In Singapore, doctors balance their duty to be truthful and transparent to patients with a sensitivity to the cultural preference for collective decision making by the family (Tan and Chin 2011).
SGD 200 was USD 138 or BDT 10,922 in 2017. SGD 300 was USD 208 or BDT 16,383 in 2017.
SGD 1,000 was USD 692 or BDT 54,612 in 2017.
SGD 600 was USD 415 or BDT 32,767 in 2017.
SGD 15,000 was USD 10,379 or BDT 819,174 in 2017.
SGD 4,000 was USD 3,460 or BDT 218,446 in 2017.
SGD 20,000 was USD 13,839 or BDT 1,092,232 in 2017.