This book is, itself, suffused with care. Care—as logic, as politics, as mode of practice, and as a medium of relations both situated and situating—has captivated the scholarly imagination in recent years. In this ethnography of organ transplantation and its caregiving in the United States, Laura Heinneman illuminates the crucial yet often-invisible informal care work that enables transplant. Her voice is concise, cogent, and compellingly focused on the somewhat quieter, less-told-tale of transplantation as it is lived over time not only in individual bodies and lives, but within homes, kin networks, local communities, and the widening gaps of a societal safety net that was never fully stitched together in the first place. Urging us beyond the high-drama settings of the clinic, the operating room, and the media scandal, Heinneman extends the spatiality and temporality of analytic attention, attending to the intimate and long-term care work that transplant requires, and to the forms of life, relation, and politics that it makes.
Heinneman’s ethnographic point of departure is the largest transplant program in an urban hub in the American Midwest, and these regional demographics are reflected in the largely white, middle-class, and heterosexual character of the study sample of some 100 patients, loved ones, and clinical professionals. The study includes an array of transplant types—kidney, liver, bone marrow, pancreas, and small bowel—each with its own distinctive characteristics (clinically and otherwise). Though scholars of transplant might find this effort to generalize across organ types disconcerting, it serves Heinneman’s aim to resist exceptionalizing this iconic form of medicine and allows her to highlight instead the commonality of experiences across these transplant types (and many other forms of chronic illness more broadly).
As hospitals discharge patients with ever-increasing efficiency, Heinneman draws our attention to the way contemporary medicine extends its clinical demands more deeply into the space of the home and the lives of kin. Administering complex medication regimens, cleaning and assessing surgical wounds, and operating feeding tubes represent just some of the crucial clinical tasks caregivers must shoulder. And such accommodations can be both life-altering and mundanely nitpicky, with everything from caregivers’ own employment possibilities to the configuration of bedroom electrical outlets to the proximity of a family’s house to the transplant center expected to conform to the call of transplantation. Heinneman tracks the toll this high-stakes toil takes, detailing just how much of transplant medicine’s celebrated triumphs rest on this unseen labor. This is a weight of responsibility—not just for success, of course, but for the ever-looming possibility of mortal failure—that lies both heavily and matter-of-factly on patients and caregivers.
Seeking a much wider and longer-term view of the lives that intersect—eventually but not inevitably—with transplant medicine, Heinneman takes up Tim Ingold’s (2011) notion of “wayfaring” to trace the meandering arc of intersubjective experience that moves people toward and away from, through and beyond transplantation. The first three substantive chapters examine this wayfaring and the conditions that structure it at multiple, intersecting, and interacting levels. Chapter 1 takes up and expands on the familiar question of compliance, exploring the multiple medical, bureaucratic, and affective ways that patients and their loved ones must demonstrate their commitment to transplant as a means toward achieving it. Widening the analytic lens, the next chapter explores some of the larger life-long patterns that can set people on a contingent path toward transplant. Chapter 3 takes a further step back to provide a more structural view of how U.S. social and health policies can intensify illness for those already living in conditions of precarity and thus amplify the need for transplantation.
The second half of the book delves into the social and moral relations—the “reciprocal webs of care”—within which people enact their lives and engage with transplant. Chapter 4 considers how seeking and accepting a transplant can so often be understood as an act of care for others, not just—or even primarily—for the ailing self. Usefully decentering the familiar, flattening focus on transplant’s life-saving transcendence as an end in itself, transplant operates here as just one among the clamor of choices, challenges, hopes, possibilities, and paths that patients and those with whom they are variously entangled pursue. And it is to those entangled others that Chapter 5 turns more directly, illuminating the frequency with which caregivers are patients themselves. Indeed, it is precisely the under/unemployment often precipitated by chronic illness that can render someone available to provide the informal labor transplant requires—while the rigors of the caregiving role can further strain bodily resources, exacerbating or even causing illness. This is an iterative, debilitating dynamic that Heinneman astutely characterizes as “conscripting caregivers’ health.” Together, Chapters 4 and 5 reveal the instability and frequent simultaneity with which people inhabit the roles of patient and caregiver as they negotiate between them through their ties to one another.
In the final two substantive chapters, Heinneman extends this analysis to other key forms of conscription on which transplant equally depends—of the intimate domestic arrangements of home life (Chapter 6) and of the notion of kinship more broadly (Chapter 7). Accommodating the clinical into the domestic emerges here as a daily and deeply felt demand that encroaches on and alters everything from kitchen-counter space to sexual desire, from sleeping arrangements to where children can attend school. In the process, Heinneman reveals how the relentless accommodations on which transplant medicine relies both presume and conjure up a very particular vision of family, endlessly available and willing to offer care. Recent attention to the increasing responsibilization for health as both practical and moral matter is usefully extended here, rendered not just a matter of individual but of family expectation. That such expectations are not always met, however, is a painful reality glimpsed in the more briefly told stories of transplant hopefuls whose ties of kinship and friendship are too fragile to gather together the necessary web of caregiving. Transplant medicine thus becomes a medium through which kinship—movingly, heartbreakingly—may be both made and unmade.
Heinneman concludes this slim, accessible study with a ringing call, inspired by feminist care ethics, to reframe the moral conversation in health care policy away from access to technology and toward access to care, broadly conceived. Her charge to take up care as a necessarily shared societal responsibility was clearly written in a more hopeful moment, when the establishment of the Affordable Care Act seemed a first, firm—if flawed—step in that direction. It is a call that now seems both all the more urgent and all the more elusive. In the end, Transplanting Care offers a compelling and clearly written argument for extending the reach of research and policy in health care beyond the clinic walls and more deeply and care-fully into the complex spaces and relations of home. In style, content, and scope, the book is well suited to teaching at multiple levels and across different audiences in anthropology, sociology, social work, and health policy. Spending time in the everyday rhythms and spaces and reciprocal webs of care of these very specific, situated lives, it turns out, has much to teach us about the fraught and mutually constituting relations between health, care, and kin, and between policy and precarity in the contemporary United States.
Ingold, T. 2011. Being Alive: Essays on Movement, Knowledge, and Description. New York: Routledge.