Celebrating 125 Years of Publishing
Celebrating 125 Years of Publishing
New Kinds of People, New Kinds of Health
Over the past thirty years, there has been a phenomenal worldwide increase in rates of childhood asthma, so much so that asthma has become the most common chronic disease among children today. In the United States, currently nearly one in ten children has asthma. In the countries most severely affected—the United Kingdom, New Zealand, and Australia—the rate is even higher, with an estimated one in four or five children suffering from this condition. Since 1995, the Global Initiative for Asthma (GINA) has attempted to address the escalating epidemic by promoting worldwide policies for asthma care. Among its recommendations on diagnosis and treatment, GINA’s current guidelines strongly advocate for self-management, encouraging patients to engage in “co-partnership” with physicians, take on increased personal responsibility, and become managers of their own, largely pharmaceutically focused care.1
Despite, however, the global reach of GINA’s policy guidelines, there remains great divergence in how governments and individuals have responded to the escalating crisis. Some medical systems focus predominantly on encouraging patient compliance with pharmaceutical use, whereas others promote much more intensive medical oversight, epitomized by residential “health spa” cures, reminiscent of the tuberculosis sanitariums of the late nineteenth and early twentieth centuries. Nonpharmaceutical remedies such as breathing retraining programs (most popularly, Buteyko), water or bath therapy (balneotherapy), and climate therapy are alternatively reviled and enshrined as part of government-supported strategies for alleviating respiratory distress. The power of patients to take part in decision making over their care varies radically, with some patients feeling dehumanized through their encounters with heavyhanded medical experts whereas others are effectively in charge of their own treatment to the point of feeling abandoned by medical services. In parts of the United States, India, China, and Central and Eastern Europe, debate also rages over whether air pollution might be a major cause of the growing epidemic, and, if so, what the various responsibilities are of states, companies, and individual citizens for cleaning up the environment.
This book is about the different ways we have come to understand responsibility for health and health care. It traces how global health policies, such as the GINA guidelines as well as an array of nationally focused policies promoting self-managed care, are being used to inculcate more personalized, patient-focused approaches to health and illness. It examines how the rise of discourses and practices promoting personal responsibility for health is reshaping our relationships to ourselves and our bodies, to our families and our doctors, and to companies and the government. It also examines concerted resistance to these policies, considering how medical professionals attempt to shore up their expertise at the same time as activists endeavor to redirect responsibility for children’s health onto the state and galvanize support for collective solutions.
Telling the story of how two very different nations—New Zealand and the Czech Republic—struggle to come to terms with the growing number of children in danger of “going blue” from lack of oxygen during an asthma attack, One Blue Child examines the wide range of policies and practices that constitute asthma care, focusing on the experiences of scientists working to halt the epidemic, parents struggling to care for sick children, activists raising the possibilities of solutions beyond pharmaceuticals, and physicians, nurses, respiratory physiotherapists, and alternative health-care providers aiming to both empower patients and make them well. Although both nations embrace advanced liberal health-care policies and actively promote patients taking increased personal responsibility for their own care, in actual fact they offer up very different perspectives on where responsibility for mitigating the epidemic lies. Looking broadly across asthma care in these two nations thus both enables us to see the variety of ways that responsibility for children’s health is currently constituted and brings into view a wide range of possibilities of what else “responsibility” could one day be made to encompass.
In the Czech Republic, scientists and physicians such as Dr. Jarmila Veselá,2 a public health specialist, view childhood asthma as fundamentally a political problem. When we first met in her Prague office, she brought a decidedly personal tone to our discussion of government policies on childhood asthma, describing the difficult years she spent living in Northern Bohemia, an area known for its environmental devastation. Now in her late fifties, she recounted that, when her children were young, “Sometimes I thought they might actually choke from all the air pollution. Some days it was so bad we shut all the windows, and the whole family spent the next few days in bed. So I know the fear that many mothers feel, and I feel very bad for them when their child has an asthma attack. But why can’t they say to themselves, ‘It doesn’t need to be this way?’”
For Dr. Veselá, asthma is a problem whose solution lies not in medicine but in governance. The current neoliberal government’s emphasis on economic growth has, she believes, outweighed the previous socialist regime’s focus on collective approaches to health. As a consequence, “The industrialists tell themselves, ‘I employ 7,000 people,’ so having one blue child in the neighborhood doesn’t matter.” In the face of promises of economic expansion, who could possibly care if there is “one blue child” struggling to breathe, Dr. Veselá wonders, other than his or her mother? Under capitalism, she laments, everyone has learned to think only of themselves. Rampant economic restructuring has led to a much more individualized focus among the citizenry. Indeed, many of the postsocialist Czech state’s reforms were specifically targeted at inculcating a greater sense of individual responsibility, especially in the area of health. “So what’s the answer to stopping asthma?” Dr. Veselá rhetorically asked, and then replied, “Don’t live next to a smoke stack!” But although such individualized solutions might help one child or one family, they clearly will not solve the problem.
In a similar vein, although Dr. Veselá embraces the idea of fostering patients’ involvement and control over their own health care, to implement something akin to the self-management programs for asthma that are popular in the West would ultimately only compound the crisis. Although Czech patients frequently grumble that their opinions are never elicited—much less listened to—in medical encounters, doctors and patients alike take issue with suggestions of stripping back medical oversight in order to promote increased patient self-responsibility. Instead of the figure of the “patient-expert” in charge of his or her own asthma care idealized by self-management policies in the West, most Czechs firmly posit medical expertise within the domain of the medical profession.
Dr. Veselá, however, raises another problem inherent in self-management policies, namely the medicalization of what she takes to be at heart an economic, environmental, and social issue. She reserves some of her harshest criticism for her fellow physicians, in particular for “the good, kind pediatrician who stuffs corticosteroids into the children and gives them their little inhalers and, when it is really bad, sends them off to the health spas so everything gets better.” The pediatrician “isn’t the solution,” she declared, “for what we need is a change in society.”
The only valid solution to childhood asthma, Dr. Veselá suggests, is for everyone to be mindful of the needs of the collective and work together in demanding the nation’s right to a clean environment. Such a solution requires a change in thinking by not only the owners of industry who pollute the air and the government that refuses to adequately regulate them but also by the citizenry who must rise out of their complacency. What is needed, she argues, is a new kind of society, made up of new kinds of people who are responsible enough to proactively engage with civic life, working together to demand that the government take action over children’s asthma.
Across the globe in New Zealand, childhood asthma constitutes a different but closely related problematic, largely focused on the question of what to do when personal responsibility falls short of resulting in good care. With its unfortunate status of having more children suffer from asthma than almost anywhere else in the world, New Zealand is a leader in scientific and medical advances in asthma care. It is the home of the International Study of Asthma and Allergies in Childhood (ISAAC), which for over twenty years (from 1991 to 2012) was the world’s largest epidemiological study of childhood allergies and asthma, covering more than 100 countries and approximately 2 million children. In 1986, New Zealand, in collaboration with Australia, generated the world’s first set of asthma guidelines. New Zealand is also a country that knows the costs when asthma care goes wrong, having been at the center of a scandal surrounding fenoterol, an asthma drug that was responsible for tripling the country’s asthma mortality rates in the late 1970s.
As a result, New Zealand has been a pioneer in developing self-management programs designed to increase individuals’ self-care through the use of asthma “action plans” that specify how to self-adjust pharmaceutical dosages and when to seek medical care. These programs are now enshrined in asthma guidelines around the world, including the widely adopted international standards published by GINA. In some countries, such as the Czech Republic, these standards are incorporated into national policies and encouraged by medical organizations but are, in fact, only sporadically implemented. In others, such as the United States, the UK, Australia, and New Zealand, they form the basis of care.
The philosophy underpinning moves toward increased self-management is often referred to as “patient-centered care.” As many New Zealand physicians told me, the purpose of patient-centered care is to put the patient “in the driver’s seat” for managing his or her own health. One respiratory physician explained how it worked in his practice: “Ultimately it’s the patient who takes responsibility for their own health, so the role of the health-care practitioner is to help the person navigate through [the system] and provide information and education so that person can be as autonomous as possible.”
Tapping into a rhetoric of self-sufficiency and autonomy that is prevalent across New Zealand, these perspectives carry much cultural cachet. They enable patients to engage in their own care at the most fundamental level and purport to create open dialogue and partnership between patients and those who provide their medical services. They also, however, mask limitations in public services and the devaluation of medical expertise and professional responsibility. In some instances, this results in accountability effectively being diverted away from those best trained to provide care (health-care workers) and onto those most in need of being taken care of (the sick). Doctors disparage patients who do not stick to their daily preventative doses of medication. Patients, in turn, frequently cobble together their own drug regimes, often ending up in the emergency room when things go wrong. Children as young as ten struggle with the responsibility of self-managing their asthma and with the symptoms that arise when self-management falls short of keeping them healthy. With the focus so firmly on the individual, collective action and moves toward collective solutions are mostly ignored, despite the efforts of many leading New Zealand respiratory physicians and scientists to advocate for government policies implementing broadscale change.
The stories in this book take place (mostly) in two locations—New Zealand and the Czech Republic—but are reflective of policies, practices, and reform movements that are reshaping health and health care globally. Both countries avidly engage in forms of biomedicine that are informed by the latest pharmaceuticals, internationally recognized “gold standards” of care, and high-level technologies, taking part in what Erin Koch describes as “the contemporary humanitarian global health enterprise [that] draws on and establishes moral imperatives and technical standards for ‘proper care’” (2013a: 10). Notwithstanding the many differences between them, the struggles of citizens in both countries speak to the same overriding concerns over what kinds of measures must be taken to ensure the health and well-being of citizens in an international climate of ever-increasing commercialization of medical care. Taken together, they raise crucial questions: How much responsibility should patients have in determining their own health care? How is medical expertise being reshaped in light of increasing patient autonomy? What are the roles of states and private companies in providing care? What other kinds of citizenship rights—from access to alternative therapies to growing up in a healthy environment—do governments need to safeguard to enable the health and well-being of their citizens? And how might these issues best be addressed in the context of increasingly globalized health care?
These questions emerge out of very pragmatic and immediate struggles over ensuring effective medical care that take place as parents attempt to keep their children breathing, doctors endeavor to provide their patients with adequate services within ever-shifting regimes of health-care funding, scientists search for ways of quelling a growing health epidemic, and government officials and policy experts reconcile slashing budgets with the pressing need for more comprehensive solutions. These struggles are over determining not only the limits of medical technologies and health-care budgets but also—and perhaps more importantly—the limits of collective political will. This book is about these struggles. It is also the story of the very personal and intimate realignments that take place as people come to cope with ongoing respiratory distress. It is an account of how parents of children with asthma learn to relate to their bodies, minds, and environments in new ways, reinterpreting their own or their children’s bodies for signs of distress, reflecting on their relationships to the pharmaceuticals they ingest, and looking for solutions that place them in the midst of the healing powers of nature or shield them from its potentially devastating consequences.
One Blue Child takes a broad approach to care, traversing multiple sites to reveal the intricacies of how children and adults with asthma are constituted as social, political, and medical objects and agents. The New Zealand side of the story focuses on familial strategies of self-care, examining how policies promoting self-management came into place and the effects of self-management on patient subjectivities, family relations, and the collaborative production of medical care between doctors, nurses, and patients. It considers how self-management policies have restructured patient–doctor relations, opening up a space of increased confusion and fear as well as familial experimentation with strategies to curb respiratory distress. It also considers moves toward more collective solutions for asthma as well as the experiential realities of asthma that lie beyond current diagnostic framings. The Czech case study sheds light on patients’ and families’ struggles to gain greater control over their health while keeping medical professionals responsible for ensuring their well-being, the entrenching of medical expertise in resistance to health policies’ emphases on promoting self-responsibility, and the utility of more holistic methods of asthma care that alleviate both mental and physical distress. It furthermore foregrounds how intense contestations over environmental pollution can fracture and remold relations among citizens, companies, and the state. By comparing these two nations’ responses to childhood asthma, this book builds a cumulative case for why, if we truly want to understand what it is to be a patient in the twenty-first century, we must look beyond the cultivation of self-managing subjects to consider the inherent interrelationality of healing.
The Rise of Personal Responsibility
In an increasing number of contexts, reform movements focused on promoting neoliberal values of personal responsibility are reshaping twenty-first-century personhood. Often part of moves to devolve a range of social services from the state onto individuals under the banner of increasing individual “choice,” advanced liberal reforms both enable and require people to take on greater personal autonomy, self-responsibility, and self-reliance (Rose 2006).
Although the actualities of advanced liberal policies vary from context to context (Hilgers 2012), the terms advanced liberalism and neoliberalism have been widely used (often interchangeably) to refer to a set of ideals that link together deregulation and privatization, a shrinking state mandate, an increased emphasis on personal choice and freedom, and a faith in markets to govern social life (Biebricher 2011). Peter Miller and Nikolas Rose have described the promotion of the ideals of neoliberalism, including the encouragement of new kinds of subjectivities and state–citizen relations, as stemming from broad sociopolitical transformations first initiated in the 1970s. As Miller and Rose document, the change that took place
entailed the deployment of new technologies of governing from the center through powerful means of governing at a distance: these appear to enhance the autonomy of zones, persons, entities, but enwrapped them in new forms of regulation—audits, budgets, standards, risk management, targets . . . It entailed a new conception of the subjects to be governed: that these would be autonomous and responsible individuals, freely choosing how to behave and act. We saw the emergence of novel strategies of activation and responsibilization . . . We saw the birth of a new ethic of the . . . responsible, autonomous individual obliged to be free. (2008: 18)
Often referred to as responsibilization, “the new ethic” focuses on promoting self-responsible, self-managing, and self-empowered individuals. There is, moreover, a decidedly moral undertone to responsibilization as individuals and collectives are under pressure to conduct ethical evaluations of themselves and their actions and enable themselves to be similarly evaluated by others. As Cris Shore and Susan Wright describe, processes promoting responsibilization encourage individuals to “embody a new rationality and morality,” resulting in “the creation of new kinds of subjectivity: self-managing individuals who render themselves auditable” (2000: 57).
Nowhere perhaps is the constitution of responsibilized subjects more evident than in the area of health, as governments and private enterprise reorganize the provision of medical care, encouraging people to engage in an ever-growing array of activities and responsibilities to improve or maintain their own mental and physical well-being. Patient groups help formulate research agendas, people look up their own illnesses on the Internet, and an increasing number of individuals attempt to maximize their well-being through self-care (Dumit 2006; Epstein 1995; Rabeharisoa, Moreira, and Akrich 2014).
Some of these shifts in authority and control are hailed as success stories, with patients feeling more empowered, resilient, and engaged as a result of their endeavors. Others, however, reveal the underside of underfunded health care, loss of medical authority, and the vacuum of knowledge and practical experience within which patients have to make life-changing decisions about their own and their family’s medical care. Very little is said of the fact that not everyone is capable, much less desiring, of turning into a responsible, self-reliant subject. In some cases, patients neither want nor accept such responsibilities, making overt as well as more subtle demands to shift responsibility back onto health professionals—requesting, in effect, to be cared for when they are ill.
Although many of us would like to have our opinions on what happens to us and our bodies respected, the entirely autonomous, self-reliant subject put forward by the rhetoric of neoliberal policy is a chimera in both senses of the word: a hoped-for illusion and a monster of fantastical proportions. Most of us remain reliant on our doctors and other health professionals to inform and guide us when we are ill, though our relationships with these professionals are radically changing, as are their own understandings of their expertise and authority. Many of us take part in relationships and families that provide us with care and nurturance and, in turn, care for and take care of children, husbands and wives, parents, siblings, or friends. We expect the state to provide at least the bare minimum of infrastructure for the services necessary to ensure health and well-being—though what might constitute that bare minimum seems to be continuously shifting.
In fact, we are all implicated in a variety of forms of responsibility, obligation, and duty, some of which emphasize being accountable for ourselves, whereas others underscore our inherent interrelationality with others, with the places and spaces we live in, and with larger social forms including neighborhoods, schools, workplaces, community groups, private companies, and states. Sometimes these other modes of responsibility align with neoliberal ideals and can be the very things that enable us to realize ourselves as individuals. At other times they pull us in opposite directions.
Across many advanced liberal societies, such autonomy is, however, increasingly held up as a very powerful ideal that motivates not only the policies of the governments we live under but also our own behaviors, opening up and closing down particular ways of thinking and acting and encouraging us to engage in projects of self-fulfillment in new and radical ways. At times, these can be powerful and uplifting activities that change our senses of self and give us the tools to reshape our lives and our health. At others, we encounter the limits of “choice” and “freedom” through radically disempowering moments that leave us stripped of not only agency but also the very possibilities of getting well.
This book examines how neoliberal policy reforms are being taken up, resisted, and reshaped in ways that change how we relate to ourselves, our bodies, and our health. Focusing on childhood asthma, I consider how new health-care policies, in particular the promotion of self-responsibility and patient expertise in light of the restructuring of state and private health services, are resulting in different kinds of medical and scientific practices, new forms of patient experience, and novel contestations among states, citizens, and private companies over rights and responsibilities to care for the sick. Here again, we have the promotion of “new kinds of people”—that is, the subjects of advanced liberalism—but quite different ones from those envisioned by Dr. Veselá. These new kinds of people, however, also take part in some much older forms of relationality, acting as mothers and fathers and children; becoming patients or doctors, nurses, or scientists; and being citizens vested with rights and responsibilities vis-à-vis the state. Each of these roles is similarly being revised in light of new political and economic agendas, but each of them also harks back to much older ideas and practices through which other kinds of responsibility, obligation, care, and sociality are constituted. The result is a series of tensions as reformist agendas open up new opportunities and foreclose others, and other kinds of social ties and duties, knowledges, and experiences demand a reframing of health and illness outside of the scope of cultivating self-knowing and self-managing subjects.
In considering these issues, this book makes three arguments. First, if we look more closely at the kinds of self-responsibility, empowerment, and patient expertise promised by neoliberal rhetorics, we recognize that they are realizable only within the context of interrelationality. Autonomy and self-realization can occur only in a framework that includes support and nurturance from others. Although this fact does not negate the possibility of becoming a self-responsible subject, it necessarily puts limits on what we mean by self-responsibility by recognizing how personal autonomy and knowledge are underpinned and supported by social relations of care and structures of obligation that are inherent within families, communities, institutions, and state–citizen relations.
Second, it has become fashionable in Western scholarship to dismiss neoliberal rhetorics of autonomy as empty promises that paper over the many detriments of widespread economic restructuring. Although I do not discount the many useful critiques of advanced liberal policy that emerge from this line of analysis, I want to suggest that there is considerable scope for considering how the ideals of increasing patient knowledge, personal empowerment, and autonomy can also be enabling, opening up possibilities for more democratic forms of patient experience and medical practice. Tracing local and global histories of asthma care reveals how the roots of neoliberal policies, in particular those encouraging self-management programs that put the onus of responsibility for monitoring and responding to symptoms on patients themselves, lie not only in the economic restructuring of health services but also in activist movements promoting patient empowerment. Whatever the problems with these programs—and, as this book shows, there are indeed many—they were born out of moves toward, and, I argue, remain, a possible site for radical political change that fosters patient rights and patient voices, enabling those who are ill to have a much more profoundly powerful role in determining their futures than was previously possible. The disjuncture, however, between the rhetoric of self-management and the need for trained professional medical oversight gives rise to serious questions over what exactly “self-management” should consist of.
Third, despite how the focus on self-management alongside the dominance of pharmaceuticals and evidence-based medicine is increasingly streamlining international approaches to asthma care, ethnographic evidence suggests that families, doctors, and scientists alike engage in other kinds of understandings of what coping with asthma actually entails. Examining a health-care system that embraces taking long outdoor walks (“climate therapy”) and spa baths (balneotherapy) alongside one that focuses solely on pharmaceuticals while quietly endorsing alternative breathing retraining programs such as Buteyko reveals the great lengths to which both Czech and New Zealand patients, parents, and medical providers go to enable more comprehensive mind–body therapeutics. The work of nurses, asthma educators, scientists, and activists in both countries, moreover, raises troubling questions over governments’, corporations’, and individuals’ responsibilities for ensuring structural conditions conducive to health and well-being. Opening up our analysis beyond how patients and doctors cope with the self-management of pharmaceuticals thus reveals a much more comprehensive understanding of what “asthma care” requires and the multiple avenues that must be explored if we are to curb this epidemic.
One way that I have found productive for examining these dynamics is through the concept of competing responsibilities, which underscores how, even in contexts where advanced liberal reforms are seemingly widely embraced, attempts to blanket out other forms of obligation and accountability can never be complete. Elsewhere, Catherine Trundle and I have noted that “responsibility” has become a key word in twenty-first-century social and political life, coming to dominate a range of conversations about not only health but also education, fitness, work, arts, and leisure (Trnka and Trundle 2014, 2017a). But we also argue that the notion of responsibilization is in danger of colonizing responsibility, so that when we think about or enact “responsibility,” we end up referring to a one-size-fits-all model of autonomous personhood. In fact, neoliberal policies exist within cultural and historical settings that always contain preexisting ties and obligations, some of which necessarily counteract them (Trnka and Trundle 2017b). In New Zealand, for instance, physician-activists’ attention to the need for healthy homes and the problems of child poverty are examples of attempts to actively and self-consciously broaden the medical and political gaze beyond self-responsibility. Conflicting ways of responding to health and social issues such as asthma are even easier to spot when we look at sites where neoliberal policies are strongly contested. In the Czech Republic, the commercialization of the health-care system is in tension with the socialist legacy of solidárnost (solidarity) under which health care remains a collective concern. There is also a strong emphasis on privileging medical professionals’ expertise that neither patients nor doctors appear willing to jettison. Moreover, self-care does not necessarily equate to responsibilization and the creation of autonomous subjects; as some of the Czech environmental activists in this book explain, self-empowerment is often seen as a necessary precursor to becoming an active, vocal participant in civic society.
Medicine and the care it entails are a particularly fruitful domain for examining responsibility. Despite the drive to inculcate patient self-responsibility, enactments of care often involve individual and collective responsibilities and obligations that far exceed the boundaries of responsibilization. Whether it be intimate forms of care that take place within families or between doctors and patients (Mol 2008) or more formal collective mandates for care enshrined in the social contract ideologies that underpin the very notion of states and citizens, care encompasses a variety of different kinds of rights and responsibilities, duties and obligations.
Although there is no limit to the medical conditions that may be productively analyzed in terms of competing responsibilities, some, such as asthma, lend themselves especially well to highlighting the multiplicity of ways that responsibilities (and rights) are framed. As asthma is one of the most significant sites for promoting self-managed care, it is not surprising that it provides insights into discourses and practices of responsibilization and the effects of neoliberal ideals of autonomy. Yet the social, medical, legal, and political facets of how this disease is lived out are much broader, requiring us to consider other aspects of health and citizenship. Alongside the encouragement of new forms of patienthood and revised notions of citizenship, asthma care is shaped by long-standing ideas of social justice, relations among states and nations, and distributions of economic power. It also requires a look inward at relationships within the family, as well as between the self, the body, and the mind. Neoliberalization frames many of these experiences but does not determine the scope of their content. Understanding asthma therefore requires a wider lens, one able to capture the range of everyday experiences of people with asthma and their families that anthropological research brings to our attention.
In offering a comprehensive perspective on the way asthma is lived out in families, in schools and medical clinics, in the scientific lab and on the floor of Parliament, and in the bodies and minds of those who suffer from this condition, One Blue Child departs from the growing body of social science and public health studies of asthma concerned with assessing the impacts of policies promoting self-management programs and advising on how to improve on them.3 Instead, my focus is on locating therapeutics in the wider context of interrelations that are pivotal to constituting care. These necessarily include not only relations to the self, be it in the form of self-management programs or other enactments of self-care, but also relations among patients and medical providers, their family members, the environment, companies, and the state.
Childhood is a particularly important site for examining these issues. Asthma tends to emerge in families, with multiple generations often suffering from this condition. Shared familial responses both highlight the interrelationality of how asthma is lived out and demonstrate divergences in how individuals cope with it. Furthermore, at the same time that asthma rates among children have skyrocketed, in many Western nations there is growing awareness and acceptance of children’s rights to self-determination, particularly the need to enable children’s active roles in determining their own well-being. In many societies, our expectations of children, understandings of what they are capable of, and the value attributed to their perspectives on their lives and their health care have radically shifted over the past two decades (Streuli, Michel, and Vayena 2011). Children have, moreover, not escaped the new social emphasis on self-management—on the contrary, they frequently bear the brunt of socialization processes intended to instill such moral framings. And yet, children are by definition dependents, requiring the care and nurturance of others. The emerging tensions between listening to children’s and young adults’ voices, teaching them to better self-manage, and recognizing their limitations and attending to their needs result in childhood constituting a particularly fertile site for examining neoliberal health-care policy, enabling us to recognize how interrelationality and dependence, as well as knowledge, autonomy, and self-responsibility, lie at the heart of how families, societies, and governments foster and curtail health and well-being.
Politicizing Asthma in the Czech Republic
Since the Velvet Revolution of 1989, widespread political-economic reforms have been reshaping Czech society. In health care, the shift from fully state-supported care to a mix of private and public health care with state-supported mandatory health insurance has radically altered the terrain of medical practice. Policy reforms have resulted in citizens shouldering increasing personal responsibility for their own health and medical care as well as, more broadly, for their overall individual and familial economic and social well-being.
Nevertheless, although moves toward greater patient empowerment and autonomy dominate current discussions of health-care policy making in Western societies, they play a more subdued role in discussions of health policy, and even more so medical practice, in the Czech Republic. Publicly, demands for increased patient rights are muted, with notable exceptions in the areas of childbirth (Hrešanová 2010) and end-of-life care. This is not to say, however, that this is not an important theme in medical encounters. As medical care is increasingly privatized, doctors and other medical professionals are necessarily redefining their roles and relationships with patients. And although patients frequently grumble about wanting more say in their health care, they also expect to have frequent access to intensive, highly regimented, specialist care. Together, doctors and patients are resisting the dilution of professional expertise while attempting to accommodate increasing patient demands and responsibilization.
For the most part, however, Czech patients and doctors are engaged in debates involving a very different kind of conceptualization of rights to those of patient autonomy and empowerment, focusing instead on the rewriting of health policies to ensure citizens’ rights to have access to particular kinds of services and protections from the state. Within these debates, asthma has a distinctive public profile. Respiratory illnesses, particularly in children, are a frequent topic of discussion on TV and radio, often raised as part of political debates that pit one side of the public, keen to protect the environment, against those focused on promoting industry. As such, government responses to childhood asthma are widely represented as something that should be of interest across the nation.
Though the language used may vary, the need to protect “one blue child” from the perils of rampant industrialism is frequently deployed to mobilize broad segments of society. Indeed, at the EU-funded Institute for Experimental Medicine in Prague, an entire scientific team devotes itself to documenting the effects of air pollution on children living in the industrial city of Ostrava. In academic papers, on TV, and on the floor of Parliament, these scientists argue that asthma should be understood as a disease of civilization and more particularly a disease of industrialization. They have furthermore contended that emissions from the largest steelworks in the Czech Republic, ArcelorMittal Ostrava, have resulted in Ostrava having the highest rate of childhood asthma in the world at 37 percent (Šrám et al. 2013). Several high-profile legal cases have been made by citizens’ groups as well as by the city of Ostrava against ArcelorMittal and against the Czech state for allowing excess emissions. The fear, however, is that enforcing emissions policies will drive away industry, and without industry there will be no jobs. Without jobs, people with—or without—asthma will suffer even more. Here then, economic rights come to be pitted against health-care rights.
In public consciousness, moreover, the role of the Czech state in addressing childhood asthma takes us far beyond standardized biomedical asthma treatments employed in the West. Indeed, public debates revolve around not only how to weigh up the right to live in a healthy, unpolluted environment against the desire to attract lucrative foreign industry but also how to resolve citizens’ rights to receive residential spa cures versus the need for government to focus on balancing the health-care budget. Popular therapies range from hourly stays in “salt rooms,” or climate-controlled rooms where children inhale heavily salinated air, sometimes also called “salt caves,” to more intensive treatments such as two- or three-week visits to the coastal areas of Croatia and Greece. The most coveted are insurance-subsidized multiweek stays in health spas renowned for their clean air, curative waters, and medicinal “procedures” such as massages and steam inhalations, which also offer a respite from urban life. Embraced by the majority of the medical establishment, such therapies are specifically intended to temper the central role of pharmaceuticals in asthma care. A March 2014 ruling by the Czech high court, moreover, found that all Czech citizens have a legal right to spa treatments, ensuring that popular therapeutics that lie outside the scope of worldwide asthma guidelines and evidence-based medicine will be used in tandem with international biomedical protocols. Some environmental activists contend that the state needs to go even further in countering industry and protecting citizens’ rights to a healthy environment, whereas for others such a ruling sends a clear message about how the Czech state considers itself to be ultimately responsible for overseeing and ensuring its citizens’ access to medical care.
Individual Responsibility, Health, and Asthma in New Zealand
When Dr. Veselá called for a “changing of society,” she had a very specific view of what that change should entail. In New Zealand, a different mode of “changing society” is taking place. It too is underpinned by a particular kind of politics with its own associated understandings of personhood, rights, and responsibility. It too grew out of radical political demands but today is largely viewed as neither political nor particularly contested, except by a relatively small minority.
New Zealand has the world’s second-highest rate of childhood asthma, just behind the UK (Ministry of Health 2013; Asher et al. 2006). Curiously, although Czechs widely view asthma as a national problem and generally believe that their asthma rates (at 10 to 15 percent of children) are extreme, most New Zealanders are surprised to hear that their country ranks so high in asthma cases. To a large extent, this blindness is due to New Zealanders’ intensely individualized approaches to health care. With the patient in the “driver’s seat” of care, it becomes increasingly unclear what role doctors should play. Policies promoting self-management and patient-centered approaches to asthma have generally translated into pharmaceuticals becoming the centerpiece of care. In some cases, the role of physicians has become reduced to a knowledgeable pharmaceutical broker, as they are the only one in the doctor–patient “partnership” able to hand out prescriptions. The result is not only the stripping away of medical authority and expertise but also a loss of medical oversight. Sometimes, the loss is extreme, as some of the asthma society representatives I spoke with estimated that up to 90 percent of patients do not receive the minimum guidance of a personalized asthma action plan, much less coordinate their use of it through regular routine visits to a physician (see also Crengle 2008).4 Less alarming but more common are patients who received action plans long ago and have spent years phoning in requests for repeat prescriptions; experimenting with various doses, timings, and combinations; cobbling together their own pharmaceutical regimes; and consulting their doctors only in cases of emergency.
More structural problems, and solutions, tend to be ignored. From the world-renowned epidemiologists who led the ISAAC study to global experts on the impacts of poor-quality housing on health, New Zealand physicians have been very vocal about the need for structural changes to help curb the alarming rise of asthma, advocating for the right of all New Zealanders to live in “healthy homes” with heating and insulation, as well as for economic relief for children living in poverty (Holt and Beasley 2002; Howden-Chapman et al. 2007). However, although many asthma nurses, particularly those working in services tailored for members of the minority Māori community, embrace the need for poverty alleviation and economic change, overwhelmingly their services focus on providing one-on-one patient education and support.
Although there are many shortcomings to focusing interventions primarily on individual patients, policies promoting self-management also have a number of merits in terms of encouraging patients to speak out and articulate their own perspectives, especially on the topic of medication use. The implementation of self-management in New Zealand is, moreover, not accidental but developed out of patients’ rights movements in the 1970s. Tired of “patronizing doctors” who dismissed their concerns, mothers such as Angela Scott, who later became a central figure at the Asthma and Respiratory Foundation, founded patient-focused asthma societies whose goal is to both educate and empower people suffering from asthma. As a result, a country of under 4.5 million people now has an extensive system of close to two dozen regionally focused asthma societies, all of which provide outreach and education to patients and parents of children with asthma.
But how did moves to promote patients’ rights turn into ten-year-olds being, in some cases, held responsible for managing their own health conditions? What strengths might we draw from patient-centered care in order to offset the more authoritarian and paternalistic relations that make a number of Czechs feel stripped of the right to determine their health care? In turn, how might a more collective focus on care that incorporates but also limits pharmaceuticals counter some of the detriments of the self-management model that has come to dominate international policy guidelines? These are some of the questions this book endeavors to answer.
1. GINA is an international organization founded in 1993 through the collaboration of the (American) National Institute of Health; the (British) National Heart, Lung and Blood Institute; and the (global) World Health Organization. For over two decades, GINA has been issuing international guidelines on asthma diagnosis and treatment. As of 2007, their policies highlight patient-doctor co-partnership and self-management as platforms for best-practice asthma care (see Kroegel and Wirtz 2009). Similar self-management approaches are promoted in the joint American Thoracic Society/European Respiratory Society asthma guidelines, the British Thoracic Society’s BTS/SIGN Asthma Guideline, the pan-European Brussels Declaration on Asthma (2007), and both Australia and New Zealand’s national asthma guidelines.
2. The names of all the parents and children and most of the medical professionals and activists I spoke with have been changed to pseudonyms, with the exception of well-known individuals who reflect on their own scientific, medical, or political achievements.
3. Much of the recent health social science literature on asthma focuses on assessing the viability of self-management programs (for example, Aroni et al. 2003; Pohlman and Becker 2006; Smith et al. 2007; Trollvik and Severinsson 2004). A particularly revealing project led by Michael Rich uses visual technologies to highlight discrepancies between what patients say to their doctors and their actual behavior at home (Chalfen and Rich 2004; Rich, Lamola, and Woods 2006). A less developed line of analysis has been the impact of self-management on family dynamics (but see Prout, Hayes, and Gelder 1999; Trnka and McLaughlan 2012). New lines of scholarship have recently begun to address a broader range of issues including patients’ fears of drug dependency (Gabe, Bury, and Ramsey 2002; Rose and Manderson 2000; Van Sickle 2009), the sociopolitical contexts of asthma research (Langstrup and Winthereik 2008; Whitmarsh 2008a), and the environmental dimensions of asthma, most notably in Mexico (Schwartz 2004; Schwartz et al. 2015) and the United States (Brown 2007; Brown, Morello-Frosch, and Zavestoski 2012; Fortun et al. 2014a, 2014b; Harper 2004).
4. A similar finding appears in a 2004 survey that revealed that 70 percent of physicians and pediatricians stated that they do not hand out action plans to families of asthmatic children (McNally et al. 2004).