Racialized Risk in Clinical Care: Clinician Vigilance and Patient Responsibility

Racial/ethnic identity is contingent and arbitrary, yet it is commonly used to evaluate disease risk and treatment response. Drawing on open-ended interviews with patients and clinicians in two US clinics, we explore how racialized risk is conceptualized and how it impacts patient care and experience. We found that racial/ethnic risk was a common but poorly defined construct for both patients and clinicians, who intermingled concepts of genetics, biology, behavior, and culture, while disregarding historical or structural context. We argue that racializing risk embodies social power in marked and unmarked bodies, reinforcing inequality along racial lines and undermining equitable health care.     

Cancer Survivorship at the Intersections of Care and Personhood

ABSTRACT

Surviving colorectal cancer following ostomy surgery with an intestinal stoma presents numerous challenges to the cultural category of full adult personhood. The foremost is managing unpredictable bowel activity. The technical management of the ostomy facilitated by biomedical specialists, is essential for personhood realignment. This article focuses on how some female long-term cancer survivors manage and adapt to this new fecal habitus by mobilizing various assemblages of care – receiving care, continuing to provide particular gendered forms of care, and returning to caregiving roles. These interdependent practices of care realign personhood, or at the very least, minimize the assaults that having an ostomy presents to the cultural category of full adult personhood.     

Out-of-Sync Cancer Care: Health Insurance Companies,Biomedical Practices,and Clinical Time in Colombia

I discuss the physical wearing out of low-income cancer patients in the aftermath of the neoliberal restructuring of the Colombian health care system in 1993. The settings for this struggle are the hospitals and the health insurance companies; the actors are bodies with cancer, the physicians who diagnose people with cancer, and the relatives who care for them. I show how most low-income patients, instead of accessing complete anticancer treatments in a timely fashion, have to negotiate and confront health insurance companies and profit-making. This results in a wait, where the time needs of the bureaucracy of the health care system and the time needs of patients’ bodies are discordant, at a cost to patients.     

Black Lives in a Pandemic: Implications of Systemic Injustice for End-of-Life Care

In recent months, Covid-19 has devastated African American communities across the nation, and a Minneapolis police officer murdered George Floyd. The agents of death may be novel, but the phenomena of long-standing epidemics of premature black death and of police violence are not. This essay argues that racial health and health care disparities, rooted as they are in systemic injustice, ought to carry far more weight in clinical ethics than they generally do. In particular, this essay examines palliative and end-of-life care for African Americans, highlighting the ways in which American medicine, like American society, has breached trust. In the experience of many African American patients struggling against terminal illness, health care providers have denied them a say in their own medical decision-making. In the midst of the Covid-19 pandemic, African Americans have once again been denied a say with regard to the rationing of scarce medical resources such as ventilators, in that dominant and ostensibly race-neutral algorithms sacrifice black lives. Is there such thing as a “good” or “dignified” death when African Americans are dying not merely of Covid-19 but of structural racism?     

Mixing and Matching: Sperm Donor Selection for Interracial Lesbian Couples

ABSTRACT

The widespread use of assisted reproductive technologies, coupled with processes of demographic and social change, are contributing to the normalization of new family configurations that extend beyond biological kinship. Non-traditional families, increasingly prevalent due to interracial and same-sex marriages, challenge normative expectations of family resemblance between siblings, parents and children. Interviews with interracial lesbian couples about their selection of a sperm donor reveal that despite the new forms of relatedness that non-traditional families enable, within the use of reproductive technologies, biological framings of race and sibling kinship continue to structure decisions about family formation.     

Improvising Race: Clinical Trials and Racial Classification

ABSTRACT

In this article, I explore how ethnicity codes are used in a prenatal trial in the United Kingdom. Here, ethnicity codes are generative objects that relationally cohere across staff, surveys and pregnant participants to create racial improvisations. I examine the origins and adaptations of ethnicity codes across three ethnographic and historical cases at micro and macro scales. The improvisation of race is a window into the movements, negotiations and temporality of racialization in clinical practice. By conceiving race as mercurial, I argue that improvisation is a key mechanism for the routinization of racial categories in clinical practice.     

Interdependent Citizens: The Ethics of Care in Pandemic Recovery

The crisis of Covid-19 has forced us to notice two things: our human interdependence and American society's tolerance for what Nancy Krieger has called “inequalities embodied in health inequities,” reflected in data on Covid-19 mortality and geographies. Care is integral to our recovery from this catastrophe and to the development of sustainable public health policies and practices that promote societal resilience and reduce the vulnerabilities of our citizens. Drawing on the insights of Joan Tronto and Eva Feder Kittay, we argue that the ethics of care offers a critical alternative to utilitarian and deontological approaches and provides a street-ready framework for integration into public health deliberations to anchor public policy and investments concerning the recovery and future well-being of America's citizens and society.     

Elder Care and Private Health Insurance in South Africa: The Pathos of Race-Class

This article shows how age as a category of dependency upends popular consciousness about race and class within postcolonial health systems. White individuals working within South Africa’s private health insurance (medical aid) market and allied fields face a conundrum with respect to elder care. Some policies accommodate older adults’ needs, but being older is costly and long-term residential care is excluded. Critically, these workers’ position as middle- and upper-class enables them to pity older, poorer whites and blacks who more often use a dysfunctional public health sector, yet the elder care gap and other limitations reveal that these workers’ own class position is also tenuous.     

Distressed Work: Chronic Imperatives and Distress in Covid-19 Critical Care

This ethnographic study introduces the term “distressed work” to describe the emergence of chronic frictions between moral imperatives for health care workers to keep working and the dramatic increase in distress during the Covid-19 pandemic. Interviews and observant participation conducted in a hospital intensive care unit during the Covid-19 pandemic reveal how health care workers connected job duties with extraordinary emotional, physical, and moral burdens. We explore tensions between perceived obligations of health care professionals and the structural contexts of work. Key findings cluster around the moral imperatives of health care work and the distress that work engendered as work spaces, senses of vocation, patient and family interactions, and end-of-life care shifted. While the danger of working beyond limits has long been an ordinary feature of health care work, it has now become a chronic crisis. Assessing this problem in terms of distressed work and its structural contexts can better address effective, worker-informed responses to current health care labor dilemmas.     

Covid-19: Exposing the Lack of Evidence-Based Practice in Medicine

The Covid-19 pandemic has altered the shape of medicine, making in-person interactions risky for both patients and health care workers. Now, before scheduling in-person appointments or procedures, physicians are forced to reconsider if they are truly necessary. The pandemic has thus thrown into relief the difference between evidence-based medical care and traditional aspects of care that lack a strong evidentiary component. In this essay, we demonstrate how this has played out in prenatal care, as well as in other aspects of medical care, during the pandemic. The extent to which these changes will persist beyond the most emergent phases of the pandemic is not clear, though insurance reimbursement practices and patient expectations will be determining factors. One thing, however, is certain: the longer the pandemic continues, the more difficult it will be for providers and patients to return to pre-Covid norms.     

Paces of Costly Care: Rare Disease Drug Access in Canada

ABSTRACT

Pharmaceutical industry representatives and public drug plan managers hold competing visions of drug access, ones I theorize as “fast” and “slow” care paces. The relationship between free market imaginaries and population-based biopolitics is negotiated through these paces from within the flexible political category of rare disease. In this article, I explore expensive rare disease drug access in Canada’s universal health system through a temporal lens. I show how two families navigate these powerful negotiations, asserting themselves as deserving of resources while finding ways to consider life and death outside of this clash between health system pragmatics and pharmaceutical promise.     

Ways of Doing: Restorative Practices,Governmentality, and Provider Conduct in Post-Apartheid Health Care

In this article, we consider the conduct of post-apartheid health care in a policy context directed toward entrenching democracy, ensuring treatment-adherent patients, and creating a healthy populace actively responsible for their own health. We ask how tuberculosis treatment, antiretroviral therapy, and maternal services are delivered within South Africa’s health system, an institutional site of colonial and apartheid injustice, and democratic reform. Using Foucauldian and post-Foucauldian notions of governmentality, we explore provider ways of doing to, for, and with patients in three health subdistricts. Although restorative provider engagements are expected in policy, older authoritarian and paternalistic norms persist in practice. These challenge and reshape, even ‘undo’ democratic assertions of citizenship, while producing compliant, self-responsible patients. Alongside the need to address pervasive structural barriers to health care, a restorative approach requires community participation, provider accountability, and a health system that does with providers as much as providers who do with patients.     

Dementia Care Work in Singapore: Embodied Relations and Power Dynamics

Based on research at a dementia day-care center in Singapore, I discuss how embodied care relations proceed amidst cultural expectations on aging, dementia, and care work. Engaging with approaches that conceptualize “care” as either empathy or control, I argue that care between older people with dementia, their families, and care workers can be understood as a reiterative, dialogic process whereby care participants strive to keep pace with each other, however briefly, due to cognitive decline, care workers’ own limitations, and particular family difficulties. Care vacillates between practices of control, surveillance, and recognition, and comprises dynamic rather than enduring power relations.     

Moral Adherence: HIV Treatment,Undetectability, and Stigmatized Viral Loads among Haitians in South Florida

In the United States, HIV is rendered a chronic condition, and viral transmission is minimized through strict adherence to pharmaceutical treatment. Treatment reduces viral loads to untraceable levels in the blood, a status known as “undetectable,” as determined by laboratory testing. For Haitians living with HIV in South Florida, “undetectable” has become more than a viral status; it is a means to know and govern themselves as moral actors and to survey and stigmatize others who remain “detectable.” The ethnographic evidence I present here suggests that Haitians adopt novel forms of subjectivity based on undetectability, producing identities entangled in biotechnical categorizations and dominant narratives of responsibility, morality, and health. Haitians’ experiences with these processes reveal the persistence of HIV stigmatization and the centrality of biomedical morality in mediating perceptions of inclusion, value, and worth of people living with HIV.     

Responding to Covid-19: How to Navigate a Public Health Emergency Legally and Ethically

Few novel or emerging infectious diseases have posed such vital ethical challenges so quickly and dramatically as the novel coronavirus SARS-CoV-2. The World Health Organization declared a public health emergency of international concern and recently classified Covid-19 as a worldwide pandemic. As of this writing, the epidemic has not yet peaked in the United States, but community transmission is widespread. President Trump declared a national emergency as fifty governors declared state emergencies. In the coming weeks, hospitals will become overrun, stretched to their capacities. When the health system becomes stretched beyond capacity, how can we ethically allocate scarce health goods and services? How can we ensure that marginalized populations can access the care they need? What ethical duties do we owe to vulnerable people separated from their families and communities? And how do we ethically and legally balance public health with civil liberties?     

The Care of “Small Things”: Aging and Dignity in Rwanda

ABSTRACT

In Rwanda, disruptions to family and social life as a result of the 1994 genocide, and the economic transformations in its aftermath, have complicated the fabric of elder care across the country. In this article, I focus on how elderly Rwandans are reconfiguring their care networks – many of which were destroyed during the genocide – by acting as caregivers and care receivers for each other on a daily basis. Although emotionally and physically taxing, elderly Rwandans emphasize that the “small things” embedded in the giving and receiving of care are intricately connected to how personal and collective dignity is cultivated.     

Damaged and Deserving: On Care in a Veteran Treatment Court

ABSTRACT

In this article, I describe the life-sustaining but inherently coercive labor of care in a veteran treatment court (VTC), a “helping court” in which veterans charged with less-severe offenses can avoid jail by completing a 12- to 18-month therapeutic and rehabilitative program. This privileged medico-legal status is intertwined with the moral economy of military service in the contemporary US and resonates with the politics of American war-making. I argue that the caring work of the court helps produce the subject of veteran disorder, simultaneously enabling life-sustaining practices and constraining the forms of life that veteran offenders can inhabit.     

Getting to the Truth: Ethics,Trust, and Triage in the United States versus Europe during the Covid‐19 Pandemic

Ethical issues around triage have been at the forefront of debates during the Covid‐19 pandemic. This essay compares both discussion and guidelines around triage and the reality of what happened in the United States and in Europe, both in anticipation of and during the first wave of the pandemic. Why did the issue generate so many vivid debates in the United States and so few in most European countries, although the latter were also affected by the rationing of health care resources? Are countries with socialized health care systems better equipped to face the hard choices of triaging? Important lessons in transparency, trust, and accountability for policy‐makers can be drawn from this comparison, demonstrating that fostering public involvement and ethical debate remains a critical element for the sustained acceptance of any triage plan.     

Pathogenic Policy: Immigrant Policing,Fear, and Parallel Medical Systems in the US South

Medical anthropology has a vital role in identifying health-related impacts of policy. In the United States, increasingly harsh immigration policies have formed a multilayered immigrant policing regime comprising state and federal laws and local police practices, the effects of which demand ethnographic attention. In this article, I draw from ethnographic fieldwork in Atlanta, Georgia, to examine the biopolitics of immigrant policing. I underscore how immigrant policing directly impacts undocumented immigrants’ health by producing a type of fear based governance that alters immigrants’ health behaviors and sites for seeking health services. Ethnographic data further point to how immigrant policing sustains a need for an unequal, parallel medical system, reflecting broader social inequalities impacting vulnerable populations. Moreover, by focusing on immigrant policing, I demonstrate the analytical utility in examining the biopolitics of fear, which can reveal individual experiences and structural influents of health-related vulnerability.