Care: Deviation

As Emily Yates-Doerr observes, the “field” of care is variously situated, ever-contextual, and overall, expansive.  It follows, then, that care manifests in ways both obvious and not, clinical and otherwise, as a complexity that can be codified in the simple act of “a doctor gently wiggling the big toe of a patient in farewell” (as Ruth Fitzgerald notes), and even extending out to “soil and seeds” (as Yates-Doerr suggests).  Care might surface in any relational field.

These tendencies inspire attention to what Livingston calls “the intersubjective phenomenology of care” (2012:112).  They also resonate with Ingold’s more general contention that the “world we inhabit” is a relational field, a “meshwork of entangled lines of life, growth and movement” (2011:63, emphasis in original). The “texture of the lifeworld” is comprised of strands woven together – the trails “along which life is lived” (2011:69-70). Building on Ingold’s insights, we are “wayfarers” whose paths indeed do enmesh with “the clinic” and the seeds. 

This finding of care in any number of conceivable domains is a large part of what makes it a provocative field to explore.  But in light of such ubiquity, how might we account for care as anything in particular?  I approach this question via considering acts of care – like Ingoldian paths of movement – as orientations toward maintenance and a [hoped-for] course.  This is the nexus at which I engage more directly with my assigned keyword of “deviation”…

What happens when we look at care as a way of deviating from one path, or, on the other hand, as a way of avoiding deviation? And for that matter, deviation from what?

In my work with organ transplant candidates and recipients1 and their kin in the Midwestern United States (from 2007-2010), I came to find that, even beyond the transfer of organs, for transplant hopefuls and recipients, living had an awful lot to do with care, and care involved maintenance.  Daily existence could look very clinical at times, even among non-clinicians, with patients and caregiving family or friends managing complicated appointment schedules, pre-transplant interventions ranging from dialysis to dental work, post-surgical wound care, and a confounding and ever-evolving medication regimen.  Gravely ill persons might seek a transplant out of a hope (see Good 2007) to diverge from one path – tangled in a meshwork of illness, decline, and likely death – and back toward another more in line with received wisdoms about living as a parent, a daughter, a spouse, a grandparent (also see Kaufman et al 2006).  Patients, too, often were caregivers to others; the very pursuit of transplantation might become an act of care in itself (Heinemann 2013).  For many, this was not a simple matter of living longer, but rather of emancipating both themselves and loved ones from the snarl of medical treatments surrounding organ failure. 

If all goes well, life for transplant recipients mostly is not lived in the clinic.  From a medical perspective, though, post-transplant living is utterly dependent on a recipient’s ability to consistently and perpetually ingest a concoction of pharmaceuticals meant to stave off immune-rejection of the organ (among other health concerns).  This obligation to punctuate daily life with the proper dose at the proper time was lived at least in part by way of patients’ 4-row by 7-column pill organizer trays, present in nearly every home I visited.

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"Pill Organizer " Photo Credit: Laura Heinemann
Visible often on kitchen counters, though sometimes tucked away in bathrooms or bedrooms, these pill organizers served as simple but powerful looms for the careful weaving of clinical needs into the rest of a lifeworld.  They accommodated the reality that, whether one was still in the midst of grave illness, or had made a full post-transplant recovery, daily wayfaring had to carry on.  Partners might have to report to work; children, to get to school; food, to be “put on the table,” and dishes, to be washed.  Still, through it all, above all, there must be no deviation from a medication regimen, lest the organ be rejected and the offerings of transplant medicine be lost. 
Whenever I asked about managing complex and sometimes competing demands, I heard time and again, “you do what you have to do” and “you just take it as it comes.”  You follow the trail as best you can.  The path, however, could look more like a thicket for some.  How to press on, then?2   One liver recipient and stalwart single mother of four from a rural area told me, “I used to go out and cut fire wood out of farmers’ treelines and stuff, and I’d tell the farmer, I’ll clean that up for you if you let me keep the wood and sell it.” “Even when you were sick?” I had asked, to which she replied, “Yeah, you gotta do something to pay them bills!” In the pre-Affordable Care Act (“Obamacare”) context of this conversation, transplant recipients who lost health coverage would be all but uninsurable because of their “pre-existing conditions.”  Social security checks were insufficient to support a family, but exceeding the income limits for Medicaid could spell disaster.  Here, wood-chopping comprised a careful yet resolute maneuver through the entanglements of bread-winning, a tattered social safety net, parenting, and transplant medicine.  
Even as care is powerfully codified and enacted in clinical domains, its threads run also through other relational fields, quotidian and compelling.  An expansive consideration calls for sustained attention, from myriad field sites, to at least two potentially fruitful questions:  What ways of being might acts of care bring about? Which ones might they carefully eschew?  

Notes

1. I worked primarily among those who were, or hoped to be, on the receiving end of organ transfer; see the work of Lawrence Cohen, Margaret Lock, Leslie Sharp, and Nancy Scheper-Hughes, to name but a few, for important critical insights into life and death among persons from whom organs are removed for transplant.

2. Mol and colleagues’ (2010) observations that there is a certain amount of “tinkering” in care (also see Han’s 2011 work, on the lived tensions between care and precariousness), also help to frame the resourcefulness of patients and kin in facing the challenges of integrating transplantation with domestic life. 

Biographical Note

Laura Heinemann is an Assistant Professor in the Department of Sociology, Anthropology, and Social Work at Creighton University.  She is interested in care and caregiving, kinship, and daily home life in the context of “high-tech” medicine and U.S. health care.

References

Good, Mary-Jo DelVecchio. 2007. “The Medical Imaginary and the Biotechnical Embrace: Subjective Experiences of Clinical Scientists and Patients.” In Subjectivity: Ethnographic Investigations,  J. Biehl, B. Good, and A. Kleinman, eds. Pp.362-380. Berkeley: University of California Press.  

Han, Clara. 2011. “Symptoms of Another Life: Time, Possibility, and Domestic Relations in Chile’s Credit Economy.” Cultural Anthropology 26, no. 1: 7-32.  

Heinemann, Laura Lynn.  Article first published online ahead of print: 8 Nov 2013.  “For The Sake of Others:  Reciprocal Webs of Obligation and The Pursuit of Transplantation as a Caring Act.” Medical Anthropology Quarterly. [DOI: 10.1111/maq.12060.]  

Ingold, Tim. 2011. Being Alive: Essays on Movement, Knowledge, and Description. New York: Routledge.  

Kaufman, Sharon R., Ann J. Russ, and Janet K. Shim. 2006.  “Aged Bodies and Kinship Matters:  The Ethical Field of Kidney Transplant.” American Ethnologist 33, no.1:81-99.  

Mol, Annemarie, Ingunn Moser, and Jeanette Pols. 2010.  “Care: Putting Practice in to Theory.” In Care in Practice: On Tinkering in Clinics, Homes and Farms. Annemarie Mol, Ingunn Moser, and Jeanette Pols, eds. Pp. 7-20. Bielefeld, Germany: Transcript Verlag.