October 29, 2022
CLINIC WITHOUT THE CLINIC
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By CINDY PATTON
Abstract
THE STREETS ARE ON FIRE with hyperactive men and women who openly challenge traffic laws by willfully crossing against the light and in the middle of the block. Their combination of anger and ecstasy frightens me; I have never felt the level of defiance that seems to grip these neighborhood residents. But my initial anxiety that I might become the object of this agitation dissipates. No one is interested in me, except perhaps when they want to get a little bit of a rise out of someone who obviously doesn't know how to act on Welfare Wednesday. Everyone is above panhandling today; they have checks to cash and plans for how to spend their money.
I learned about the spirit of the anticipation of check day on my earlier visits to patients in this beleaguered neighborhood-the plans to buy a new stereo component or to pay back money borrowed from a friend. I also saw what became of these normativizing desires when check day actually arrived; the good intentions to repay the financial kindness of others most often took a back seat to assuming the mantle of consumer. But even this ethical compromise engenders further practical assaults on the temporary quest to be "normal" through money. The high price tags on goods within the formal economy quickly wear down residents' resolve to prove their place as consumers, and they yield to the direct and indirect savings that result from acquiring both temporary and durable pleasures in the informal economy. The most-together residents will spend part of their check on new clothes or CDs or other small treasures, but few will undergo the scrutiny that going to the mall adjacent to the neighborhood entails. Instead, they will shop at the local army/navy store and pawn shops, or join their more desperate brothers and sisters at the informal markets that crop up on the street. This economy appears and disappears before our eyes. Commerce sloshes over and around us as we stumble into drug sales, scan the crowds of street-market buyers and sellers for our patients, and steer clear of the anxious storekeepers alert to the shifty customers looking for the "five-finger discount" that promises to extend their shopping spree beyond the value of their meager welfare check.
Newspapers and research reports often describe this kind of neighborhood as "chaotic," and so it appears to an outsider. Health planners and even the myriad service providers who have worked in this neighborhood for years extrapolate from place to person and refer to the inhabitants themselves as "chaotic" (Patton et al. 2005a). But this label seems less true each time I walk in the path of two nurses who work out of a home care program, a unit of the local health authority, that serves this tiny, dilapidated, but amazingly resilient neighborhood. It is not chaotic, I came to see, but purposeful: even in the most visually arresting scenes, when residents are twitching and lurching into the street, they are headed to places that I am not yet able to perceive as destinations. I have come to understand that health planners in particular think of residents here as "chaotic" not so much because of the way they live their lives-which, in any event, outsiders know very little about-but because of the messy trace they leave in the medical record system as "patients" who pingpong their way into and away from the service agencies created over the last fifty years.'
I learned about the spirit of the anticipation of check day on my earlier visits to patients in this beleaguered neighborhood-the plans to buy a new stereo component or to pay back money borrowed from a friend. I also saw what became of these normativizing desires when check day actually arrived; the good intentions to repay the financial kindness of others most often took a back seat to assuming the mantle of consumer. But even this ethical compromise engenders further practical assaults on the temporary quest to be "normal" through money. The high price tags on goods within the formal economy quickly wear down residents' resolve to prove their place as consumers, and they yield to the direct and indirect savings that result from acquiring both temporary and durable pleasures in the informal economy. The most-together residents will spend part of their check on new clothes or CDs or other small treasures, but few will undergo the scrutiny that going to the mall adjacent to the neighborhood entails. Instead, they will shop at the local army/navy store and pawn shops, or join their more desperate brothers and sisters at the informal markets that crop up on the street. This economy appears and disappears before our eyes. Commerce sloshes over and around us as we stumble into drug sales, scan the crowds of street-market buyers and sellers for our patients, and steer clear of the anxious storekeepers alert to the shifty customers looking for the "five-finger discount" that promises to extend their shopping spree beyond the value of their meager welfare check.
Newspapers and research reports often describe this kind of neighborhood as "chaotic," and so it appears to an outsider. Health planners and even the myriad service providers who have worked in this neighborhood for years extrapolate from place to person and refer to the inhabitants themselves as "chaotic" (Patton et al. 2005a). But this label seems less true each time I walk in the path of two nurses who work out of a home care program, a unit of the local health authority, that serves this tiny, dilapidated, but amazingly resilient neighborhood. It is not chaotic, I came to see, but purposeful: even in the most visually arresting scenes, when residents are twitching and lurching into the street, they are headed to places that I am not yet able to perceive as destinations. I have come to understand that health planners in particular think of residents here as "chaotic" not so much because of the way they live their lives-which, in any event, outsiders know very little about-but because of the messy trace they leave in the medical record system as "patients" who pingpong their way into and away from the service agencies created over the last fifty years.'
We, too, ping-pong through the neighborhood, stopping by one place because they have a reliably clean bathroom, another place because a client we are looking for often has lunch there, and yet another place because it still manages the methadone for a client who has otherwise been transferred to the nurses. Some days I feel that "services" are splattered across the neighborhood, with program requirements (or "threshold for services") so low or so vague that what is on offer at one bleeds into what is on offer at the next. This lack of clarity about who does what bothers the health authority, which perceives a massive "duplication of services." But most residents see this swirl of overlapping offers of care as a complex and inescapable system of surveillance.
Our job today is to "deliver health care" in the form of home care nursing for people with terminal illnesses, primarily HIV and cancer or both. The nurses, acknowledging why I am here, note wryly, "You aren't going to see much today, no one is going to be at home." The nurses are acculturated to the daily and weekly rhythms of the neighborhood. They know that for check day-indeed, for this entire week-their patients will not be found at the index location that the nurses' employer envisions.
The health authority management system is less than a decade old in our province,' but it has enthusiastically embraced the national mandate to move health care from "hospital to home." Although the home care nurses provided virtually the same care in the same general geographical boundaries for two decades before the invention of this new administrative structure, from the health authority's point of view the revitalized job of this set of nurses is to respond to the nationally mandated deterritorialization of services away from the hospital.' The nurses deliver a range of medical services from wound care to medication monitoring to patient-family education designed (by yet other planners) to prepare those released from intensive hospital care to undertake (along with the "family" they are presumed to have) quasi-medical self-care at home. The new home care mandate instantiates a "new practice" with no apparent recognition of any similarities between the new "home care" and the daily practices of care in which the nurses engaged before their work was absorbed under the aegis of a health authority. Implicitly, regardless of whatever they did "before" they are now understood to be transforming the home into a clinical space. But what happens when the patients, as on this day, are not at "home"? Or when "home" is not a fixed, private, or enduring space to begin with? How does this new health activity intersect with a "home" that is already a site of intensive surveillance by landlords, police, "bad boyfriends," and petty criminals? How can the vague range of services and attitudes toward care (for what is the desire to help oneself medically but a practice of the self potentially at odds with other facets of presentation of self in fluctuating contexts?) be accomplished by nurses who operate in spaces that are almost completely devoid of the practical and affective components that the middle classes think of as "home"?
In this essay I narrate the "clinic" as a vacillating space and time in the recognition and management of disease in contexts seemingly hostile to the practice of medicine at all. Though, as I will demonstrate, care activities morph into each other, are suddenly suspended, or incrementally appear, my examples focus on two of the four care activities that the health authority defines as the nurses' scope of practice: wound care and patient education. I leave the third and fourth areas-palliative care and medication management-for a more extensive treatment in a future analysis. It is important to note here that Canada has universal health care, and that all of these tasks correspond to categories of nursing care that are covered under the provincial health care payment plan, that is, each of these activities has a billing code and a definition. But while these services are provided at no cost to patients, the particular elements of care that the governing health body defines are distinct practices, but actuarial categories used further up the food chain of health system management to determine costs-and allocation of the presumptively scarce resource-of care. The distinct care practices defined by the health authority are compared to a representation (a "chart," which itself is a pale rendering of what actually happens) of the nurses' practice in specific cases to ensure that they are providing neither too much nor too little care (figured as an amount of time, and sometimes as a list of materials, such as bandages or protective booties, types of antibiotic cream, and home support adjuncts such as walkers and portable toilets) for a particular type of patient. Within this framework, a patient equals a disease-a "diabetes patient," a "cancer patient," an "HIV patient"-and each disease is in turn articulated to a set of care components that are ranked by the level of specialization required to provide the care and by the time to be expended on it.
The increased use of home care is believed to decrease costs by having "lower-level" (hence, cheaper) allied health personnel deliver the minimal activities that will enable patients to become self-supporting. The home care mandate dovetails uneasily with a second emergent out-ofhospital mandate, namely that of establishing special venues or "regular home" capabilities for "palliative care" (care designed not for recovery from disease but for easing an individual's last days with a recognized illness).' The thin line between home care and palliative care for the desperately ill HIV or cancer patient complicates the nurses' management of their caseload. Cost algorithms limit the number of visits available for home care patients presumed to eventually be able to function on their own, whereas death serves as the time limit for palliative patients, who are presumed to die imminently. Like the neoliberal approach to home care, palliative care sentimentalizes the family and the patient by imagining the patient/dying person to be enfolded in the comfort of their own home, surrounded by sad but brave family members who can make decisions about highly personal but nonmedical care such as changing diapers and feeding systems as well as medical decisions such as pain management enacted through legal channels via prescriptions. Like home care, which asserts that care in the home is less alienating than care in the hospital, palliative care is understood not only to be more humane for individuals but also a more cost effective way than a hospital bed to manage the very last days of life.
In the context of impoverished neighborhoods, the harsh reality is that palliative care may be the first real care received by individuals who have led their medical lives beneath the radar. After decades of watching people "die with their boots on," the nurses are not concerned with end of life care and cost containment but rather "dying with dignity"-in this case defined as not dying totally alone or in a back alley. From the nurses' point of view, having a patient declared "palliative" enables them to practice more flexibly. And however much the health authority may scrutinize their requests for signs that a patient isn't really so bad, for a class of people whose alienation from society is precisely their chronic ill health, their throw-away status, one is hard pressed to say where the living starts to end and the dying starts to begin.
The nurses have long argued (and actuaries and systems analysts now agree)5 that patients do not equal diseases and diseases like AIDS and cancer do not immediately spell "death." Individuals may have more than one disease, and they may have compounding circumstances that are either quasi diseases ("addiction," "mental health issues") or nondiseases (at present) like poverty, unemployment, or homelessness. Multidiagnosis patients affected by the recently designated and much discussed "social determinants of health" not only complicate our understanding of etiology and treatment of specific diseases but also result in a fundamental ethical and practice crisis in the very act of "giving care," beginning with the glaring disjuncture between the rhythm of the neighborhood and the structure of the physical clinics that have cropped up in the neighborhood over the last decade.
Neighborhood Time, Clinic Time, and the Constitution of Spaces for Care
The nurses and I weave toward the main clinic (the actual clinic, a relatively new facility in the neighborhood), which is staffed with doctors and nurses who never leave the building.' The home care nurses are very small women, even smaller than I am, and they walk very fast. Their size, speed, and trademark blue backpacks are their "signature." They look and move totally differently from the "street nurses" who are employed by the public health department to do outreach, education, and triage "ion the street." The street nurses are much taller and tougher looking, they carry satchels and stand around on corners much like the drug dealers who look nonchalant but open for business. The division of labor in the neighborhood is clear, or rather, the venue of labor is clear: street nurses on streets, doctors and their nurses in the clinic, and the home care nurses-well, they dash from home to home, or what passes for home, for the people on their overwhelmingly large caseload.
A few weeks on the job in the neighborhood revealed to me one of the first conflicts between medicine as offered and care as needed, as well as the underlying dynamic of and accentuated need for both homes and care in poor neighborhoods. The most obvious conflict is that between the regimented schedules of middle-class life, which underwrite the modalities of the typical physical clinic, and the nonregimented temporalities of the neighborhood. Physical clinics typically operate by appointment, and although drop-ins are always "welcome," those who come unannounced are rarely treated with hospitality. Thus, while formally available, care outside the home is rarely "caring," even if it leaves the tattered privacy of the patients' place of habitation intact. Furthermore, the quality of relationship between the physical clinic and the patient is entirely different from the relationships in home care, and it reflects the sense of disposability that people in this neighborhood have described in interviews. For example, a forty-four-year-old woman heavily involved in the drug subculture complained that her doctor mainly only dealt with her "addiction," but even then she was unmotivated to change doctors: "It's mostly methadone-all my other health needs seem to get ignored there and I know that I should be switching to another doctor but I just don't seem to do that, I don't know why."'
In contrast to most middle-class residents of Canada, who understand themselves to have an assigned doctor, residents of this neighborhood feel little attachment to their primary care physicians. Middle-class people have a certain feeling toward their doctor, however much they may dislike going to visit him or her. Indeed, even if they rarely see their assigned doctor they know they can fairly easily access primary care when they need it. There is, then, a sense of continuity and even intimacy in even the least activated doctor-patient relationship among members of the middle class. But while many residents (up to 50 percent) claim to have a primary care physician, and many see these doctors quite often, they do not exhibit any sense of comfort from the arrangement. When asked whether they go to their doctor, many give accounts of waiting undue amounts of time before undergoing the rigors of clinic time.
Organizing patients' time to correspond to clinic time is one of the major tasks of the home care nurses, and they have various strategies for keeping track of patients' medical appointments: they make notations in the patients' records, place notes on the wall calendars that a minority of patients have in their homes, and rely on more-responsible partners and friends to remind the patient when they are supposed to appear. But specialist appointments are frequently booked ahead for weeks or even months (and thus many "check cycles" into the future), and even if the assessment or operation initially was greatly desired by the patient, their interest in "getting care" almost always wanes with the passage of time, and they instead employ their own pain management strategies, which unfortunately, often involve street drugs.'
Getting patients to their appointments entails another set of strategies; the nurses arrive at patients' homes early on appointment day and make certain that the patient is out of bed and dressed in time to take a taxi or to be accompanied by one of the many advocacy groups whose volunteers escort patients to medical and social service appointments. But it is never clear until appointment day how, exactly, a patient will get to their appointment; on these days, the nurses press through their visits with unusual attention to the amount of time elapsing as they do their best to rendezvous with the particular patient neither too early nor too late. On one occasion, the nurses roused a patient, helped her get dressed, and escorted her to the designated taxi stop so that she would arrive well in advance of her appointment. Before the taxi arrived, however, the patient apparently realized that she had "plenty of time" and proceeded to get involved in illicit activities, thereby missing her taxi and her appointment. On another occasion, the nurses arrived at a seemingly ideal time only to discover that the patient had gotten up unusually early and had already left to make their own round of morning activities, again, missing their appointment. Rarely did patients seem to have either a strong sense of impending appointments, or any feeling of duty to calibrate their own time to match clinic time.
As I became enmeshed in this vortex of made and missed appointments, and as I saw the nurses' daily attempts to explain the differing advice given to patients by the various clinicians they did manage to see, I realized that these temporal and affective lags between neighborhood time and clinic time are made even more complex as more specialists come into the picture. Medicine itself (and each subdiscipline differently) has its own sense of timing for when "prevention" has failed and "diagnosis" occurs, when "treatment" is required and for how long, and when "treatment" has failed and what happens "next." But the temporal flow of poor neighborhoods, tied to the cycle of government payments, does not easily interconnect either with clinics' schedules or with medicine's understanding of the timing of care. When we made our rounds on check week, I was frequently admonished by clinicians and advocates that I shouldn't expect to see any real work, that is, I wouldn't be able to observe them caring for or interacting with residents. "Check week" was presented to me as a kind of time out of time-carnivalesque, even-but almost no one tried (anymore) to make neighborhood time work in favor of the timing of health. Instead, medicine and its purveyors seemed to acquiesce to the idea that they must push their patients toward health during the intervening weeks and hope they didn't lose all of their ground during check week. They simply gave in to the neighborhood time, and some actually used check week as an opportunity to catch up on the clinic's unseen activities of record keeping, desk organizing, and supply ordering.
Indeed, it is hard to imagine how to correlate these different times, not just because residents are less interested in receiving care during check week, but because their sense of self varies through the phases of neighborhood time. The opulent presentation of self through commercial participation, enabled by the switch on check day from the informal economy to the formal, lasts about a week. After the initial blush of wealth, money becomes scarce and is primarily in the hands of the most ruthless residents, who parcel it out in exchange for the forms of loyalty associated with abject dependency. Over the next two weeks the level of violence and interpersonal crime will increase in parallel with the desperation level of the uniformly beleaguered residents. Time becomes space, as people who have partied a little too hard and behaved badly when they had a cash cushion find themselves evicted from their crummy singleroom apartments. Others, who avoided conflict by sleeping outdoors when they were too wasted to go home, return after a few days to find their belongings in the alleyway, pitched out by the (ex) boyfriend or girlfriend who has exercised an undocumented preemption of their space.
Of these variously displaced people, those with friends or relatives and any semblance of credibility may engage in a round of "couch surfing" that results in too many people in one apartment and no one in others. I have not seen any accounting of the number of people who lose or change domicile in tandem with the temporality of welfare payments, and it is difficult to sort out whether one group of people is constantly marginally housed while another group maintains more or less continuous occupation, and whether any particular form of social embeddedness or personal trait separates these groups (Patton et al. 2005b). However it is that personal biographies and structural dynamics interweave in the neighborhood, a substantial minority of individuals do not have anything close to a "home" that could be the locale of their home care when their time of need arrives. Instead, when patients become very sick and need home care-often upon release from hospital (that is, they got there very late in their disease process, often after a round of housing changes that depleted their last health are usually at that point without a home in any middle-class sense and are "placed" in the best location that release planners and advocates can identify. Thus, their poor health pins them down to a place and time where their nurses may intercept them.
Working in single-room apartments (often called single-room occupancy spaces, or SROs) and shelters is quite different from what is involved in the "home care" that conventional home care imagines. Unlike the suburban home, which presumes privacy as well as security from policing forces, the nurses must negotiate their care practice in highly surveilled spaces. It is not uncommon for people to come outside of their rooms to receive treatment, medication drop-offs, or simply check in with the nurses. This is related to residents' experience of being hassled by police, coping with the variable rules about visitors, and having their rooms scrutinized by housing personnel who require varying levels of cleanliness and orderliness if renters are to retain their housing. They may have drugs and paraphernalia lying about, and in some cases they are actively dealing drugs from their room. Women in the sex trade may have customers in their room, or they may simply have evidence of their work around. People living in social housing may be violating regulations by having live-in partners, and patients in SROs may be violating rules that require payment of nightly fees for extra "guests." It is very common for people in the relatively luxurious social housing units to engage in informal rental arrangements with relatives or acquaintances. Those who "rent" a couch in this way act far more entitled to the space than mere visitors, since, from their point of view, they have a quasi-contractual relationship to the principal renter of the single room or social housing unit. Thus, nurses must be nonjudgmental and must convince patients that they will not expose these activities to police, building managers, or others who are seen by the patients as keeping them under surveillance.
Health planners rarely look at the intransigent monthly cycle in the life of impoverished neighborhoods. Their "health indicators" look at the long-term morbidity and mortality of the ailments that cost the system the most money (those that require long hospital stays in particular), since hard-nosed actuaries believe that they are at least allowing some semblance of care for those who have spent their life destroying their health. Rarely do such indicators measure fluctuation in illness and disability as these are experienced in poor neighborhoods. One solution might be to incorporate a question into surveys to indicate where in the welfare cycle the data were gathered (certainly not during check week, when "no one is home"), but even this acknowledgment of the contingency of that particular slice of time cannot help us isolate the effects of the rhythm of economic, social, and habitational changes and their synergistic effect on personal attitudes, practices, and presentation of self in a microculture in which possessing, using, and trading health-eroding goods like drugs, alcohol, and cigarettes are means of gaining social status. In particular, most research has been unsuccessful in parsing out the effects of couch surfing, which counts as "homelessness" but may well be a time of greater intimacy, caretaking (especially eating), and rest than periods of high-energy activities undertaken in one's own-eviction-prone-room. But it is precisely these contingent and compounding situations and interrelationships that care providers, like the nurses in my study, negotiate as they try to materialize the clinic as a small part of the total context in which health is generated and sustained.
Wound Care: Making Do
This complex relationship between the nurses, their patients, and the spaces in which nursing practice is supposed to occur results in considerable "making do." In one case, for example, a patient refused to admit the nurses to her room in an SRO. The nurses were obliged, then, to create "clinical time" in a hallway. We had gone there to perform a bandage change on the woman, who had been severely burned when she passed out in her bathroom and lay for some time unconscious against the radiator. At this point the dressings needed to be changed daily. But after several days of changing the dressings in the woman's small apartment, she would not allow us in. When we arrived, the nurses knocked and a man answered from inside. The nurses announced who they were, and the man relayed this information to the woman. The woman replied from the other end of the apartment, saying, "Tell them to come back later." But when the man understood that we were there to change her dressings, he went back to have a discussion with the patient, who then reported through the door that she would come out into the hallway. The patient was quite high and unable to stand easily, and we asked if we might go get her a chair. She propped herself up in the corner and said, "No, just do it." The dressing change took about five minutes, during which time other residents came up the stairs and looked our way. I had noticed that when residents see the nurses enter a building, they sometimes approach and ask, "Is someone sick? Is someone hurt?" or request that the nurses check up on a particular person. But this time, they just moved on. Certainly, some recognized the nurses, and there were medical supplies in easy sight, but the scene was quite different from, say, the times when we have come across paramedics trying to revive someone who has overdosed. Instead of gawking at our patient, people simply glanced and moved on. The air of efficiency and privacy that our encounter in this quite public place exuded had transformed this dirty end of a hallway into a "clinical space," or what the nurses have, in more formal moments, called a "clinic in a corner" (Giles 2001; Griffiths 1996).
Their notion of a clinic in a corner comes from having established several "clinics" in shelters. Two shelters allow the nurses to share actual rooms where materials can be stored. In a third space they have access to, there is no separate room. Still, the "clinic" happens temporally when the nurses arrive and are given a list of people who want to see them. But a clinic in a corner can happen almost anywhere. Some days during my study, it seemed that half of the people we met on the street wanted a Band-aid, or wanted the nurses to look at a wound or hear a complaint. The nurses then often move the person, transformed into a patient, into a less busy part of the street and apply a small dressing, but as often they attenuate the clinical encounter by telling the person to meet them later at whichever of the shelter "clinics" they are going to be. I have been quite amazed that individuals almost invariably appear at these "appointments"-much more often, it seems, than when they make the appointments, scheduled far in advance, with their specialists. On one hand, this makes sense because the individual already has a plan for their day, and they can immediately make adjustments in order to arrive at this appointment an hour or two later. On the other hand, it has seemed to me that their momentary transformation into a patient when they seek advice on the street inheres, and they carry this sense of proximate medical care with them more readily for this short duration.
The vacillation between patient and person, and the corollary vacillation between care provider and person, are a routine (and for me, exhausting) part of the day. The shift would sometimes occur at warp speed, such as on the second day that we treated a patient I will call Hal. Hal was a wellknown and, I gathered, well-loved drug dealer who had managed his HIV very successfully for years until he discovered a rapidly progressing bone cancer in his skull that was quickly destroying his inner ear and brain tissue. This was very disconcerting to him since he felt-rightly-that he had a giant hole in his head and that he was losing his mind. Although I had seen bodies riddled with larger and deeper holes, this one was more visually alarming because it could not be hidden with clothing. We wanted desperately, as did he, to change the dressing on his head, which involved removing and then repacking a hole about the size of an orange.
Hal was extremely mobile and independent almost to his very last day of life, and we had trouble finding him for several days after he was released from the hospital, when he landed (perhaps courtesy of an aggressive placement advocate) in a fairly nice SRO hotel, albeit with only a small trash bag with his remaining belongings.' On the day we finally found him, his home care worker, a tall young man assigned to difficult male clients, was helping Hal clean his place and organize his clothes to be washed. In other cases the worker, whom I'll call Darrel, has waited with us while a patient is treated, but on this day we felt we did not need his help, and we knew that he had other patients to see. Hal, disgusted by his hole and both wanting and not wanting it cared for, said, "Just wait a minute while I smoke some rock." Recognizing the discomfort of the situation, he took pains to medicalize his drug use-in fact, to help create the space of clinic. "I have to smoke my rock first. That's my medication and I can't deal with this until I do." We then stepped the eight feet across the room to the couch and began laying out the dressings, thereby reprivatizing his half of the room by more explicitly constituting the couch as the space of the clinic. Hal smoked one rock while we pretended not to notice as the tell-tale acrid smoke wafted by, and then he came across the room to be treated. But before the nurses could make much progress, he leapt up again and crossed over to the "domestic" space we had all worked to construct. He couldn't find his rock and proceeded to dismantle his bedding and small collection of belongings. We became caught up in the frenzy of his obsessive behavior and moved into the "domestic space" ourselves, now as persons recognizing that special feeling of having lost something that was only just there. Hal began accusing his care worker of stealing his rock, asking us, "Does Darrel smoke rock? I bet he smokes rock." We now took on the role of Darrel's friend and defended him as we were brought deeper into the frenzy of finding the missing drug. Mixed feelings and motives ran high. We were afraid we would never be able to treat Hal's wound. We were afraid of being accused of stealing his drugs. It did no good to move toward the clinic/ couch because we could not get Hal to "come to the clinic." He shuttled us back and forth between domestic and clinical space, at once asking us to help him find his drugs and ordering us to get away from his belongings. Finally, he allowed the nurses to change his dressing and we left, anxious that we would not be allowed in his room again.
We called Darrel to warn him about what he would find when he returned to Hat's room, and Darrel called us a few hours later to say that the drugs had been in the pants Hal had put in the washing machine. By some miracle of plastics technology, the rock survived the wash. For the next few days, Hal had his dressing changed at the clinic where he picked up his methadone. It was nearly a week before Hal allowed the nurses to come to his room, and then care proceeded as if nothing had happened at all. Although this case is an extreme of black comedy, the scene of construction and deconstruction of clinic is the daily stuff of home care practice for nurses working in impoverished neighborhoods.
Patient Education: Who Needs to Know What?
A central analytic concern of our overall research project was to interrelate the forms of "connectedness" among residents with their relationships to the various sources of health care. As I suggested above, one of the central premises of the hospital-to-home movement, often flying under progressive-sounding terms like "patient-centered" care, assumes that when the patient leaves the hospital they will arrive home to a fabric of concerned others, usually presumed to be blood relatives, who along with the patient can be educated to be self-sufficient, responsibilized care supporters. I rarely use the term "responsibilized," which is a concept aligned with the excellent work of scholars working in the Foucauldian tradition (especially as usefully extended by Nikolas Rose [1999]) that understands the current state of "governmentality" as one in which individuals take on self-management and self-policing functions once enacted by the state. I use the term here, however, because it accurately describes the repatriated patient envisioned by current home care rhetoric, governing practices, and billing standards. Patients who are in the hospital, barring an accident that is no fault of their own (though, as Kristen Tytler [2008] and others have shown, the logic of insurance that assigns degrees of responsibility for acts suggests that even accidents are partially one's own fault), have evidently already failed to self-govern (or else why would they be in the hospital?). The home care process, then, is not a return to a prior state of self-governance but rather is a reeducation process, an attempt to take a person who has, almost by virtue of being a patient at all, failed in their ethic and practices of care. In its most explicit formulations, patient education is a none-too-subtle occasion for bringing the patient toward middle-class norms.
The patients I observed were, and had long been, far from the proper citizens imagined by home care. But the nurses I observed have worked in the neighborhood for so long they have ceased to see this difference. Thus, as they adapt the mandates established by the current health authority to make them function in the real lives of their patients, they do very little of the reeducation that is the implicit goal of much of the conventional patient education that accompanies home care. Instead of "teaching" patients how to take their medicine or change their drug patches, the nurses try to discover how patients have undertaken these activities in the past. Aware of the high level of suspicion of people in the neighborhood generally, they take pains to ask patients what help they need rather than assuming that the individual needs a particular set of information. Patients' learning in relation to accommodating medication schedules or understanding the importance of not missing doses always seemed to occur incrementally, or even, it seemed to me, incidentally. Unlike the newer nurses in the neighborhood, the long-term nurses actually developed their practice style years before the implementation of the current health authority scheme and before the neighborhood was declared a health emergency, thereby allowing for deviation in some clinical practices. Thus, the nurses work within a model that is much closer to an empowerment model of care than the neoliberal "self-sufficiency" model that has the practical effect of limiting the number of visits an individual patient is meant to receive. Indeed, as longtime participants in the "care" of this neighborhood, the nurses are highly attuned to the complex interconnections that individuals might maintain despite appearing to be totally socially isolated-by middle-class and home care standards, that is. Instead of conceptualizing their patients as a particular type, with a specific trajectory of illness and referral for care, the nurses recognize that the mosaic of services in the Downtown Eastside (DTES) offers many different entry points to, in particular, HIV services, and that the dense interconnections that outsiders view as pathological relationships of mutual use and abuse might at any moment bring them a new patient who needs information and referral to other services (see Giles 2006).
During my field study, I saw that it was often on the most exhausting days of the nurses' work that the most revealing interactions took place. On one very long day, after seeing the fifteenth of the twenty patients who would fill the day's roster, we stopped in at a shelter and entered the small room that the nurses were permitted to maintain there. This was a Friday, the day when the doctor makes her rounds through the neighborhood, and by common agreement it was the nurses' practice to rendezvous at the shelter and use the occasion to make a sweep of known and yet-to-be-known patients. One of the people on our list that day, "Dave," came to see the doctor because he was ready to start HIV antiretroviral treatment. His very request signaled to us that he was already fairly knowledgeable about HW He told a typically long and inconsistent story, the gist of which was that he had experienced unexplained weight loss a few years ago and then was shocked to discover he had HIV. He treated us to a story of his downward spiral and run-ins with the law that had resulted in a persistent bench warrant. We realized that he was trying indirectly to explain why he had not been receiving care, but why he should now be considered a good candidate for medication. He described his legal troubles as completely disabling: "I had a cloud over me, you see, I couldn't do anything." But this problem was resolved, and he had acquired a housing subsidy and a place at one of the nicer social housing units. In the story, he recounted living somewhere else, a slip in his neat narration of himself as on the way back to normal. We asked why he had decided to come back to our city, to which he responded: "The HIV community and amenities and help available." He specifically mentioned his case worker at the local AIDS society, and exclaimed: "Those girls really follow through!" He was very upbeat and looking forward to having his own place: "It's nice to have your own bathroom, and be able to sit at a kitchen table then go sit on a couch. It is those little things."
Dave's performance was quite clever, and it was obvious that while he was supposed to be receiving AIDS education, all he really wanted was a prescription for his medications. He clearly recognized the stereotypical case that he was supposed to embody-that of the down-and-out man who had "hit bottom," put his life back together, and was now ready to undertake the strictures (including appropriately maintaining a quite nice apartment) that would move him upward on the path to health and propriety. Although it cost him nothing, he made a mistake in his storytelling by showing too much familiarity with the local agencies; indeed, he had clearly been a client there and spoke of his caseworkers as if they were old friends.
In sharp contrast to Dave, who clearly had deep knowledge of the complex of services available to him, was another patient we saw at the ad-hoc shelter clinic, who was also already connected to a range of services, though this fact passed nearly unspoken because of her presentation as the victim of a beating. We saw this patient on an equally busy and complicated day, and we might easily have skipped over her because there didn't seem to be anything wrong with her-indeed, from the health authority point of view, she was not an appropriate patient because she was young, fully able bodied, and had no illness that required "home care." But as we were leaving the shelter, the day manager asked the nurses to see a young woman who couldn't have been over twenty and they agreed. She did not live in the neighborhood but had arrived at the shelter overnight and was expected to stay for a few days. She had injured her ankle and, because she was not completely mobile, she was accorded "bed rest" privileges; that is, she was allowed to spend the day in a "night use only" room because she was injured. In assessing her ankle, which seemed barely injured, it became clear that she had been in an altercation with her boyfriend and that he had stomped on her ankle. In the course of discussing where she might go for an X-ray, the nurses asked if she had a regular doctor. She gave a name and then said very casually, "That's who monitors my HIV meds." Although no one reacted, I discussed this moment with the nurses later, and they admitted they were shocked: after all of their years dealing with every kind of patient in this neighborhood, they too had been unprepared for an otherwise robustlooking teenager whose HIV was sufficiently advanced that she had been placed on antiretroviral drugs. They had also been blown away by the casualness with which she had offered the information. Apparently for this young woman, HIV was a relatively common condition that was not worthy of undue fuss or hiding.
This woman received her HIV care via a doctor who monitored her HIV medications. But, unlike Dave, who perceived a unique community populated by persons with AIDS, HIV care, and support workers, she normalized HIV in her world of bad boyfriends and periodic homelessness. Both individuals were knowledgeable about their medical conditions and were connected to HIV care, but through very different routes. The causes of their homelessness were also quite different. In Dave's case, a life of problems and an abrasive personality (and, likely, a psychiatric diagnosis) had left him in life circumstances in which his HIV providers were the warmest relationships in his life. The pleasant young woman found the shelter her best option after a violent run-in with her boyfriend-an interlude before going to friends or family or returning to him again. In neither case was traditional "patient education" appropriate, and indeed, in their own ways each patient asserted their knowledge of their own care needs. For these patients, and for others who aren't able to fully understand what is happening to them, the model of a patient returning from hospital to home with the helpful nurse explaining their new situation is clearly ludicrous.
Conclusion
In these examples I have tried to show that "clinic" is as much a disposition and a relationship as a particular place and time. In all likelihood, the reality of physical clinics helps underwrite the nurses' practice, if only through its stasis, inflexibility, and surveillance capabilities (versus the nurses' adaptability, mobility, and capacity to provide care without "seeing" what is happening around them). But in the care of the poor, at least in this case, it is clear that timing is everything; that relationships of care have very little intrinsic durability; that trust must be built and rebuiltor built in groups that are different from the middle-class care model.
When the Canadian government decided to try to address many different health system problems through increased utilization of home care, they created both an expanded mandate and a false expectation for the many urban nurses who were already practicing care among the poor. At its worst, this has resulted in thrusting new agents of the state into the lives (but less often spaces, since they have very few) of people with little capacity to reverse or redirect policy. But at its best, the very impossibility of localizing care in defined spaces, the very impossibility of "home care for homeless people," leaves this form of care in a kind of Wild West condition practiced by highly experienced and adaptable outlaw nurses whose care exceeds the systems' ability to police it precisely because its temporality is "quicker on its feet" than the health authority's algorithms and billing categories. While this leaves the nurses vulnerable to criticism and results in no increased staffing, the care that they can provide opens up new possibilities for understanding the transient "clinic" as a space of resistance to the otherwise unresponsive (to patients and nurses) new health systems.
Notes
I am extremely grateful for the patience, kindness, and huge depth of knowledge of the main two nurses that I followed, Susan Giles and Evanna Brennan. They have documented their work at the Web site wwwmultidx.com.
1 I should say something about what I am studying. In British Columbia from 2004 to 2007 I headed a research team examining the fit and lack thereof between services offered by various groups and agencies and the needs expressed by people living in a neighborhood heavily affected by poverty, unstable housing, and, in the last decade, HIV and hepatitis C. The project I worked on was titled Homecare for Homeless People with HIV, and it was supported by the Social Sciences and Humanities Research Council of Canada (grant no. 855-2003-0003) and the Canadian Foundation for AIDS Research (grant no. 016009) and approved through the ethics board of Simon Fraser University and the health authority in which I conducted the work. The tasks of the project included a study of the history of service placement in the neighborhood, including archival research and interviews with longtime providers and advocates; interviews of friendship networks; reanalysis of survey data generated in another study conducted by one of the coinvestigators; art-based community investigations of housing and health care issues, and issues of consent to care; and my own ethnographic work with the actual home care nurses. I entered the field from the point of view of these nurses, and from the outset I understood my work to be a clinic ethnography. I had conducted two previous clinic ethnographies-one a multisite team study of a set of methadone clinics; one a single-ethnographer study in a specialized HIV clinic-and I was interested in how such an approach would play out in this new setting.There were important differences from the more formal clinical settings in which I had previously worked. By definition, home care nursing takes place in a home; hence, this field of nursing is about managing the domestic and the medical. As I will note here, and have described at length elsewhere (Patton and Loshny 2009), the complication for the nurses in this context is their very unique and interesting negotiation of "home" among people who do not have homes by the conventional definitions of the "home care" model. The line between the "spacetime" of "clinic" and its "other" is blurred from two directions: in the constitution of "clinical time" in the home spaces of the homeless, and in the constitution of "domestic space" in the bleak places that are designated as "clinics" in shelters.
2 According to the informational Web site of the British Columbia health authorities, there are five health authorities that "govern, plan and coordinate services regionally within sixteen health service delivery areas and participate with ... one Provincial Health Services Authority, which coordinates and/or provides provincial programs and specialized services, such as cardiac care and transplants.... The structure, introduced in December 2001, modernized a complicated, confusing and expensive health care system by merging the previous 52 health authorities into a streamlined governance and management model" (Ministry of Heath Services 2009).
3 There are several kinds of nurses working in the neighborhood, and the residents make little distinction between their functions but rather recognize only the individuals, whom they sometimes like and other times dislike. I studied the home care nurses who work in an adult care unit of the regional health authority. The other neighborhood nurses are from much newer programs instituted in the wake of the area's declared HIV public health crisis in the late 1990s, and they include street nurses who work under the public health department (distinct from the health authority); clinic nurses stationed permanently at the two new clinics established by the health authority; nurses at the longer-standing clinic for native people, which has extensive day programs and frequently houses homeless people for a night; nurses attached to a shelter society; and several "methadone" nurses who are attached to the above facilities but function separately out of their own office within the facility.
It is important to recognize that home care nurses-both the functions of and many of the actual individuals-predate the health authority. To some extent the veterans do what they always have done, even when it does not fit entirely with the health authority's more recent but official mandate. When this results in enhanced attention to the patients, the nurses' activities are invisible to the health authority. But when doing what they always did results in overtime, or additional mileage, or acting outside their new scope of practice, the health authority's regulatory and actuarial structure kicks in, and the nurses come under scrutiny. I did not observe the nurses prior to the implementation of the health authority. However, based on my observations, I believe that while the nurses have refined their care practices as the health needs of the neighborhood have evolved, they are providing essentially the same care with the same logic as they did before the health authority was implemented. In my opinion, it is as much the disciplining result of the reconceptualization of their work, which has been accompanied by a structural inability to calculate costs and results to reach the obvious conclusion that more staff members are needed, as it is the changing needs (especially for HIV, hepatitis C, and drug addiction in general) of patients that places heightened pressure on the nurses providing home care in this neighborhood.
4 By definition, one is only palliative after one has received "acute" or "chronic" care that has failed to "save" the patient's life. In practice, people who are mainly "dying of old age" may also come under the aegis of "palliative care," but that is mainly because of the alarming rise in chronic illness in Western populations related to declining cardiovascular health and independent of increases in longevity rates. Our studied refusal to aggressively pursue all manner of preventative medicine has abandoned all but a modest few to emergent and chronic illness that will plague them from their middle years to the much later death that our advances in palliation have enabled.
5 The emergence of the diagnostic and actuarial category of "complex patient," described as an entirely new type of patient, represents both the admission by the health system that there is not a simple equation between patient and disease and the reinstantiation of precisely that equation, but with a far more complex calculus.
6 One of the benefits of working in community nursing, as the home care nurses now prefer to call their subdiscipline, is that the nurses are at some remove from doctors. There are quite a few older nurses in this unit, and over lunch, when I ask them how they came to work there, they tell me stories about their stifling years of work as ward nurses. Crypto-feminists all, they begrudgingly appreciate the fact that their main prescribing physician is a woman, and she makes house calls on Mondays and Fridays. These doctor-nurse days were particularly interesting opportunities for me to observe the subtle attitudes, styles, and speech patterns that define "clinical practice" as doctorly or nursely. On several of the occasions when we were all on the road together, patients, some of whom have known me for a while, ask me: Are you a doctor or a nurse?" A small triumph for women's rights is that it is now imaginable that a woman might be a doctor. It is also a small tribute to sexism, since it is likely that my general practice of watching others work has signaled me as "not a nurse."
7 All undocumented quotes are from my field notes and interviews conducted during the course of the research as outlined in note 1.
8 It is very common for patients to spontaneously argue that their drug use is their self-managed form of medication. As I show in a later passage, one patient claimed that he had to smoke crack before having a bandage changed because that was his form of medication and anxiety reduction. As anthropologists and sociologists who investigate drug cultures almost uniformly argue, "illegal drugs" are almost always viewed by users as being closer to pharmaceuticals than the law imagines.
9 People who live their lives bouncing between living settings have an extremely difficult time hanging onto their belongings. A few have specific people (sometimes a family member) who agree to keep their most prized things when they go to jail or are kicked out of their housing. But the most peripatetic individuals just go through endless cycles of replacing clothing and personal items time and again; their structured inability to hold onto "belongings" is doubled by their overwhelming lack of "belonging."
References
Giles, S., and E. Brennan. 2001. "'Home' nursing of HIV-positive clients in the urban core." Canadian Nurse 97 (1): 33.
2006. 'Action-based care in Vancouver's DTES." Multidx, http://wwwmultidx .com/multidx-frame.htm (accessed June 2008).
Griffiths, H. 1996. "Nursing in the urban core." NursingBC(November-December): 14-16.
Ministry of Health Services. n.d. "British Columbia's health authorities." http://www .health.gov.bc.ca/socsec/about.html (accessed June 2008).
Patton, C., and Helen Loshny. 2008. "Negotiating 'home' and 'care' amongst the HIV+ homeless: An ethnographic case study of homecare nursing habitus shaped by and through competing philosophies of care." Canadian Journal of Nursing Research 40 (2): 172-88.
Patton, C., D. Cuthane, I. Goldstone, 0. Hankivsky, S. Kamal, M. Petty, J. Sommers, and M. Tyndall. 2005 a. "Chaotic lives or hidden networks? An analysis of care seeking strategies in four groups of marginally-housed persons at risk of contracting HIV." Poster presentation 102, Fourteenth Annual Canadian Conference on HIV/AIDS Research, Vancouver, May 12-15.
Patton, C., D. Culhane, T. Goldstone, and M. Tyndall. 2005b. "Patterns of housing and service access among actively injecting drug users." Poster presentation 103, Fourteenth Annual Canadian Conference on HIV/AIDS Research, Vancouver, May 12-15.
Rose, Nikolas. 1999. Powers of freedom: Reframing political thought. Cambridge: Cambridge University Press.
Tytler, Kristen. 2008. "Insuring intimacy: Reconfiguring the subject of risk." Ph.D. diss., University of Melbourne.
Our job today is to "deliver health care" in the form of home care nursing for people with terminal illnesses, primarily HIV and cancer or both. The nurses, acknowledging why I am here, note wryly, "You aren't going to see much today, no one is going to be at home." The nurses are acculturated to the daily and weekly rhythms of the neighborhood. They know that for check day-indeed, for this entire week-their patients will not be found at the index location that the nurses' employer envisions.
The health authority management system is less than a decade old in our province,' but it has enthusiastically embraced the national mandate to move health care from "hospital to home." Although the home care nurses provided virtually the same care in the same general geographical boundaries for two decades before the invention of this new administrative structure, from the health authority's point of view the revitalized job of this set of nurses is to respond to the nationally mandated deterritorialization of services away from the hospital.' The nurses deliver a range of medical services from wound care to medication monitoring to patient-family education designed (by yet other planners) to prepare those released from intensive hospital care to undertake (along with the "family" they are presumed to have) quasi-medical self-care at home. The new home care mandate instantiates a "new practice" with no apparent recognition of any similarities between the new "home care" and the daily practices of care in which the nurses engaged before their work was absorbed under the aegis of a health authority. Implicitly, regardless of whatever they did "before" they are now understood to be transforming the home into a clinical space. But what happens when the patients, as on this day, are not at "home"? Or when "home" is not a fixed, private, or enduring space to begin with? How does this new health activity intersect with a "home" that is already a site of intensive surveillance by landlords, police, "bad boyfriends," and petty criminals? How can the vague range of services and attitudes toward care (for what is the desire to help oneself medically but a practice of the self potentially at odds with other facets of presentation of self in fluctuating contexts?) be accomplished by nurses who operate in spaces that are almost completely devoid of the practical and affective components that the middle classes think of as "home"?
In this essay I narrate the "clinic" as a vacillating space and time in the recognition and management of disease in contexts seemingly hostile to the practice of medicine at all. Though, as I will demonstrate, care activities morph into each other, are suddenly suspended, or incrementally appear, my examples focus on two of the four care activities that the health authority defines as the nurses' scope of practice: wound care and patient education. I leave the third and fourth areas-palliative care and medication management-for a more extensive treatment in a future analysis. It is important to note here that Canada has universal health care, and that all of these tasks correspond to categories of nursing care that are covered under the provincial health care payment plan, that is, each of these activities has a billing code and a definition. But while these services are provided at no cost to patients, the particular elements of care that the governing health body defines are distinct practices, but actuarial categories used further up the food chain of health system management to determine costs-and allocation of the presumptively scarce resource-of care. The distinct care practices defined by the health authority are compared to a representation (a "chart," which itself is a pale rendering of what actually happens) of the nurses' practice in specific cases to ensure that they are providing neither too much nor too little care (figured as an amount of time, and sometimes as a list of materials, such as bandages or protective booties, types of antibiotic cream, and home support adjuncts such as walkers and portable toilets) for a particular type of patient. Within this framework, a patient equals a disease-a "diabetes patient," a "cancer patient," an "HIV patient"-and each disease is in turn articulated to a set of care components that are ranked by the level of specialization required to provide the care and by the time to be expended on it.
The increased use of home care is believed to decrease costs by having "lower-level" (hence, cheaper) allied health personnel deliver the minimal activities that will enable patients to become self-supporting. The home care mandate dovetails uneasily with a second emergent out-ofhospital mandate, namely that of establishing special venues or "regular home" capabilities for "palliative care" (care designed not for recovery from disease but for easing an individual's last days with a recognized illness).' The thin line between home care and palliative care for the desperately ill HIV or cancer patient complicates the nurses' management of their caseload. Cost algorithms limit the number of visits available for home care patients presumed to eventually be able to function on their own, whereas death serves as the time limit for palliative patients, who are presumed to die imminently. Like the neoliberal approach to home care, palliative care sentimentalizes the family and the patient by imagining the patient/dying person to be enfolded in the comfort of their own home, surrounded by sad but brave family members who can make decisions about highly personal but nonmedical care such as changing diapers and feeding systems as well as medical decisions such as pain management enacted through legal channels via prescriptions. Like home care, which asserts that care in the home is less alienating than care in the hospital, palliative care is understood not only to be more humane for individuals but also a more cost effective way than a hospital bed to manage the very last days of life.
In the context of impoverished neighborhoods, the harsh reality is that palliative care may be the first real care received by individuals who have led their medical lives beneath the radar. After decades of watching people "die with their boots on," the nurses are not concerned with end of life care and cost containment but rather "dying with dignity"-in this case defined as not dying totally alone or in a back alley. From the nurses' point of view, having a patient declared "palliative" enables them to practice more flexibly. And however much the health authority may scrutinize their requests for signs that a patient isn't really so bad, for a class of people whose alienation from society is precisely their chronic ill health, their throw-away status, one is hard pressed to say where the living starts to end and the dying starts to begin.
The nurses have long argued (and actuaries and systems analysts now agree)5 that patients do not equal diseases and diseases like AIDS and cancer do not immediately spell "death." Individuals may have more than one disease, and they may have compounding circumstances that are either quasi diseases ("addiction," "mental health issues") or nondiseases (at present) like poverty, unemployment, or homelessness. Multidiagnosis patients affected by the recently designated and much discussed "social determinants of health" not only complicate our understanding of etiology and treatment of specific diseases but also result in a fundamental ethical and practice crisis in the very act of "giving care," beginning with the glaring disjuncture between the rhythm of the neighborhood and the structure of the physical clinics that have cropped up in the neighborhood over the last decade.
Neighborhood Time, Clinic Time, and the Constitution of Spaces for Care
The nurses and I weave toward the main clinic (the actual clinic, a relatively new facility in the neighborhood), which is staffed with doctors and nurses who never leave the building.' The home care nurses are very small women, even smaller than I am, and they walk very fast. Their size, speed, and trademark blue backpacks are their "signature." They look and move totally differently from the "street nurses" who are employed by the public health department to do outreach, education, and triage "ion the street." The street nurses are much taller and tougher looking, they carry satchels and stand around on corners much like the drug dealers who look nonchalant but open for business. The division of labor in the neighborhood is clear, or rather, the venue of labor is clear: street nurses on streets, doctors and their nurses in the clinic, and the home care nurses-well, they dash from home to home, or what passes for home, for the people on their overwhelmingly large caseload.
A few weeks on the job in the neighborhood revealed to me one of the first conflicts between medicine as offered and care as needed, as well as the underlying dynamic of and accentuated need for both homes and care in poor neighborhoods. The most obvious conflict is that between the regimented schedules of middle-class life, which underwrite the modalities of the typical physical clinic, and the nonregimented temporalities of the neighborhood. Physical clinics typically operate by appointment, and although drop-ins are always "welcome," those who come unannounced are rarely treated with hospitality. Thus, while formally available, care outside the home is rarely "caring," even if it leaves the tattered privacy of the patients' place of habitation intact. Furthermore, the quality of relationship between the physical clinic and the patient is entirely different from the relationships in home care, and it reflects the sense of disposability that people in this neighborhood have described in interviews. For example, a forty-four-year-old woman heavily involved in the drug subculture complained that her doctor mainly only dealt with her "addiction," but even then she was unmotivated to change doctors: "It's mostly methadone-all my other health needs seem to get ignored there and I know that I should be switching to another doctor but I just don't seem to do that, I don't know why."'
In contrast to most middle-class residents of Canada, who understand themselves to have an assigned doctor, residents of this neighborhood feel little attachment to their primary care physicians. Middle-class people have a certain feeling toward their doctor, however much they may dislike going to visit him or her. Indeed, even if they rarely see their assigned doctor they know they can fairly easily access primary care when they need it. There is, then, a sense of continuity and even intimacy in even the least activated doctor-patient relationship among members of the middle class. But while many residents (up to 50 percent) claim to have a primary care physician, and many see these doctors quite often, they do not exhibit any sense of comfort from the arrangement. When asked whether they go to their doctor, many give accounts of waiting undue amounts of time before undergoing the rigors of clinic time.
Organizing patients' time to correspond to clinic time is one of the major tasks of the home care nurses, and they have various strategies for keeping track of patients' medical appointments: they make notations in the patients' records, place notes on the wall calendars that a minority of patients have in their homes, and rely on more-responsible partners and friends to remind the patient when they are supposed to appear. But specialist appointments are frequently booked ahead for weeks or even months (and thus many "check cycles" into the future), and even if the assessment or operation initially was greatly desired by the patient, their interest in "getting care" almost always wanes with the passage of time, and they instead employ their own pain management strategies, which unfortunately, often involve street drugs.'
Getting patients to their appointments entails another set of strategies; the nurses arrive at patients' homes early on appointment day and make certain that the patient is out of bed and dressed in time to take a taxi or to be accompanied by one of the many advocacy groups whose volunteers escort patients to medical and social service appointments. But it is never clear until appointment day how, exactly, a patient will get to their appointment; on these days, the nurses press through their visits with unusual attention to the amount of time elapsing as they do their best to rendezvous with the particular patient neither too early nor too late. On one occasion, the nurses roused a patient, helped her get dressed, and escorted her to the designated taxi stop so that she would arrive well in advance of her appointment. Before the taxi arrived, however, the patient apparently realized that she had "plenty of time" and proceeded to get involved in illicit activities, thereby missing her taxi and her appointment. On another occasion, the nurses arrived at a seemingly ideal time only to discover that the patient had gotten up unusually early and had already left to make their own round of morning activities, again, missing their appointment. Rarely did patients seem to have either a strong sense of impending appointments, or any feeling of duty to calibrate their own time to match clinic time.
As I became enmeshed in this vortex of made and missed appointments, and as I saw the nurses' daily attempts to explain the differing advice given to patients by the various clinicians they did manage to see, I realized that these temporal and affective lags between neighborhood time and clinic time are made even more complex as more specialists come into the picture. Medicine itself (and each subdiscipline differently) has its own sense of timing for when "prevention" has failed and "diagnosis" occurs, when "treatment" is required and for how long, and when "treatment" has failed and what happens "next." But the temporal flow of poor neighborhoods, tied to the cycle of government payments, does not easily interconnect either with clinics' schedules or with medicine's understanding of the timing of care. When we made our rounds on check week, I was frequently admonished by clinicians and advocates that I shouldn't expect to see any real work, that is, I wouldn't be able to observe them caring for or interacting with residents. "Check week" was presented to me as a kind of time out of time-carnivalesque, even-but almost no one tried (anymore) to make neighborhood time work in favor of the timing of health. Instead, medicine and its purveyors seemed to acquiesce to the idea that they must push their patients toward health during the intervening weeks and hope they didn't lose all of their ground during check week. They simply gave in to the neighborhood time, and some actually used check week as an opportunity to catch up on the clinic's unseen activities of record keeping, desk organizing, and supply ordering.
Indeed, it is hard to imagine how to correlate these different times, not just because residents are less interested in receiving care during check week, but because their sense of self varies through the phases of neighborhood time. The opulent presentation of self through commercial participation, enabled by the switch on check day from the informal economy to the formal, lasts about a week. After the initial blush of wealth, money becomes scarce and is primarily in the hands of the most ruthless residents, who parcel it out in exchange for the forms of loyalty associated with abject dependency. Over the next two weeks the level of violence and interpersonal crime will increase in parallel with the desperation level of the uniformly beleaguered residents. Time becomes space, as people who have partied a little too hard and behaved badly when they had a cash cushion find themselves evicted from their crummy singleroom apartments. Others, who avoided conflict by sleeping outdoors when they were too wasted to go home, return after a few days to find their belongings in the alleyway, pitched out by the (ex) boyfriend or girlfriend who has exercised an undocumented preemption of their space.
Of these variously displaced people, those with friends or relatives and any semblance of credibility may engage in a round of "couch surfing" that results in too many people in one apartment and no one in others. I have not seen any accounting of the number of people who lose or change domicile in tandem with the temporality of welfare payments, and it is difficult to sort out whether one group of people is constantly marginally housed while another group maintains more or less continuous occupation, and whether any particular form of social embeddedness or personal trait separates these groups (Patton et al. 2005b). However it is that personal biographies and structural dynamics interweave in the neighborhood, a substantial minority of individuals do not have anything close to a "home" that could be the locale of their home care when their time of need arrives. Instead, when patients become very sick and need home care-often upon release from hospital (that is, they got there very late in their disease process, often after a round of housing changes that depleted their last health are usually at that point without a home in any middle-class sense and are "placed" in the best location that release planners and advocates can identify. Thus, their poor health pins them down to a place and time where their nurses may intercept them.
Working in single-room apartments (often called single-room occupancy spaces, or SROs) and shelters is quite different from what is involved in the "home care" that conventional home care imagines. Unlike the suburban home, which presumes privacy as well as security from policing forces, the nurses must negotiate their care practice in highly surveilled spaces. It is not uncommon for people to come outside of their rooms to receive treatment, medication drop-offs, or simply check in with the nurses. This is related to residents' experience of being hassled by police, coping with the variable rules about visitors, and having their rooms scrutinized by housing personnel who require varying levels of cleanliness and orderliness if renters are to retain their housing. They may have drugs and paraphernalia lying about, and in some cases they are actively dealing drugs from their room. Women in the sex trade may have customers in their room, or they may simply have evidence of their work around. People living in social housing may be violating regulations by having live-in partners, and patients in SROs may be violating rules that require payment of nightly fees for extra "guests." It is very common for people in the relatively luxurious social housing units to engage in informal rental arrangements with relatives or acquaintances. Those who "rent" a couch in this way act far more entitled to the space than mere visitors, since, from their point of view, they have a quasi-contractual relationship to the principal renter of the single room or social housing unit. Thus, nurses must be nonjudgmental and must convince patients that they will not expose these activities to police, building managers, or others who are seen by the patients as keeping them under surveillance.
Health planners rarely look at the intransigent monthly cycle in the life of impoverished neighborhoods. Their "health indicators" look at the long-term morbidity and mortality of the ailments that cost the system the most money (those that require long hospital stays in particular), since hard-nosed actuaries believe that they are at least allowing some semblance of care for those who have spent their life destroying their health. Rarely do such indicators measure fluctuation in illness and disability as these are experienced in poor neighborhoods. One solution might be to incorporate a question into surveys to indicate where in the welfare cycle the data were gathered (certainly not during check week, when "no one is home"), but even this acknowledgment of the contingency of that particular slice of time cannot help us isolate the effects of the rhythm of economic, social, and habitational changes and their synergistic effect on personal attitudes, practices, and presentation of self in a microculture in which possessing, using, and trading health-eroding goods like drugs, alcohol, and cigarettes are means of gaining social status. In particular, most research has been unsuccessful in parsing out the effects of couch surfing, which counts as "homelessness" but may well be a time of greater intimacy, caretaking (especially eating), and rest than periods of high-energy activities undertaken in one's own-eviction-prone-room. But it is precisely these contingent and compounding situations and interrelationships that care providers, like the nurses in my study, negotiate as they try to materialize the clinic as a small part of the total context in which health is generated and sustained.
Wound Care: Making Do
This complex relationship between the nurses, their patients, and the spaces in which nursing practice is supposed to occur results in considerable "making do." In one case, for example, a patient refused to admit the nurses to her room in an SRO. The nurses were obliged, then, to create "clinical time" in a hallway. We had gone there to perform a bandage change on the woman, who had been severely burned when she passed out in her bathroom and lay for some time unconscious against the radiator. At this point the dressings needed to be changed daily. But after several days of changing the dressings in the woman's small apartment, she would not allow us in. When we arrived, the nurses knocked and a man answered from inside. The nurses announced who they were, and the man relayed this information to the woman. The woman replied from the other end of the apartment, saying, "Tell them to come back later." But when the man understood that we were there to change her dressings, he went back to have a discussion with the patient, who then reported through the door that she would come out into the hallway. The patient was quite high and unable to stand easily, and we asked if we might go get her a chair. She propped herself up in the corner and said, "No, just do it." The dressing change took about five minutes, during which time other residents came up the stairs and looked our way. I had noticed that when residents see the nurses enter a building, they sometimes approach and ask, "Is someone sick? Is someone hurt?" or request that the nurses check up on a particular person. But this time, they just moved on. Certainly, some recognized the nurses, and there were medical supplies in easy sight, but the scene was quite different from, say, the times when we have come across paramedics trying to revive someone who has overdosed. Instead of gawking at our patient, people simply glanced and moved on. The air of efficiency and privacy that our encounter in this quite public place exuded had transformed this dirty end of a hallway into a "clinical space," or what the nurses have, in more formal moments, called a "clinic in a corner" (Giles 2001; Griffiths 1996).
Their notion of a clinic in a corner comes from having established several "clinics" in shelters. Two shelters allow the nurses to share actual rooms where materials can be stored. In a third space they have access to, there is no separate room. Still, the "clinic" happens temporally when the nurses arrive and are given a list of people who want to see them. But a clinic in a corner can happen almost anywhere. Some days during my study, it seemed that half of the people we met on the street wanted a Band-aid, or wanted the nurses to look at a wound or hear a complaint. The nurses then often move the person, transformed into a patient, into a less busy part of the street and apply a small dressing, but as often they attenuate the clinical encounter by telling the person to meet them later at whichever of the shelter "clinics" they are going to be. I have been quite amazed that individuals almost invariably appear at these "appointments"-much more often, it seems, than when they make the appointments, scheduled far in advance, with their specialists. On one hand, this makes sense because the individual already has a plan for their day, and they can immediately make adjustments in order to arrive at this appointment an hour or two later. On the other hand, it has seemed to me that their momentary transformation into a patient when they seek advice on the street inheres, and they carry this sense of proximate medical care with them more readily for this short duration.
The vacillation between patient and person, and the corollary vacillation between care provider and person, are a routine (and for me, exhausting) part of the day. The shift would sometimes occur at warp speed, such as on the second day that we treated a patient I will call Hal. Hal was a wellknown and, I gathered, well-loved drug dealer who had managed his HIV very successfully for years until he discovered a rapidly progressing bone cancer in his skull that was quickly destroying his inner ear and brain tissue. This was very disconcerting to him since he felt-rightly-that he had a giant hole in his head and that he was losing his mind. Although I had seen bodies riddled with larger and deeper holes, this one was more visually alarming because it could not be hidden with clothing. We wanted desperately, as did he, to change the dressing on his head, which involved removing and then repacking a hole about the size of an orange.
Hal was extremely mobile and independent almost to his very last day of life, and we had trouble finding him for several days after he was released from the hospital, when he landed (perhaps courtesy of an aggressive placement advocate) in a fairly nice SRO hotel, albeit with only a small trash bag with his remaining belongings.' On the day we finally found him, his home care worker, a tall young man assigned to difficult male clients, was helping Hal clean his place and organize his clothes to be washed. In other cases the worker, whom I'll call Darrel, has waited with us while a patient is treated, but on this day we felt we did not need his help, and we knew that he had other patients to see. Hal, disgusted by his hole and both wanting and not wanting it cared for, said, "Just wait a minute while I smoke some rock." Recognizing the discomfort of the situation, he took pains to medicalize his drug use-in fact, to help create the space of clinic. "I have to smoke my rock first. That's my medication and I can't deal with this until I do." We then stepped the eight feet across the room to the couch and began laying out the dressings, thereby reprivatizing his half of the room by more explicitly constituting the couch as the space of the clinic. Hal smoked one rock while we pretended not to notice as the tell-tale acrid smoke wafted by, and then he came across the room to be treated. But before the nurses could make much progress, he leapt up again and crossed over to the "domestic" space we had all worked to construct. He couldn't find his rock and proceeded to dismantle his bedding and small collection of belongings. We became caught up in the frenzy of his obsessive behavior and moved into the "domestic space" ourselves, now as persons recognizing that special feeling of having lost something that was only just there. Hal began accusing his care worker of stealing his rock, asking us, "Does Darrel smoke rock? I bet he smokes rock." We now took on the role of Darrel's friend and defended him as we were brought deeper into the frenzy of finding the missing drug. Mixed feelings and motives ran high. We were afraid we would never be able to treat Hal's wound. We were afraid of being accused of stealing his drugs. It did no good to move toward the clinic/ couch because we could not get Hal to "come to the clinic." He shuttled us back and forth between domestic and clinical space, at once asking us to help him find his drugs and ordering us to get away from his belongings. Finally, he allowed the nurses to change his dressing and we left, anxious that we would not be allowed in his room again.
We called Darrel to warn him about what he would find when he returned to Hat's room, and Darrel called us a few hours later to say that the drugs had been in the pants Hal had put in the washing machine. By some miracle of plastics technology, the rock survived the wash. For the next few days, Hal had his dressing changed at the clinic where he picked up his methadone. It was nearly a week before Hal allowed the nurses to come to his room, and then care proceeded as if nothing had happened at all. Although this case is an extreme of black comedy, the scene of construction and deconstruction of clinic is the daily stuff of home care practice for nurses working in impoverished neighborhoods.
Patient Education: Who Needs to Know What?
A central analytic concern of our overall research project was to interrelate the forms of "connectedness" among residents with their relationships to the various sources of health care. As I suggested above, one of the central premises of the hospital-to-home movement, often flying under progressive-sounding terms like "patient-centered" care, assumes that when the patient leaves the hospital they will arrive home to a fabric of concerned others, usually presumed to be blood relatives, who along with the patient can be educated to be self-sufficient, responsibilized care supporters. I rarely use the term "responsibilized," which is a concept aligned with the excellent work of scholars working in the Foucauldian tradition (especially as usefully extended by Nikolas Rose [1999]) that understands the current state of "governmentality" as one in which individuals take on self-management and self-policing functions once enacted by the state. I use the term here, however, because it accurately describes the repatriated patient envisioned by current home care rhetoric, governing practices, and billing standards. Patients who are in the hospital, barring an accident that is no fault of their own (though, as Kristen Tytler [2008] and others have shown, the logic of insurance that assigns degrees of responsibility for acts suggests that even accidents are partially one's own fault), have evidently already failed to self-govern (or else why would they be in the hospital?). The home care process, then, is not a return to a prior state of self-governance but rather is a reeducation process, an attempt to take a person who has, almost by virtue of being a patient at all, failed in their ethic and practices of care. In its most explicit formulations, patient education is a none-too-subtle occasion for bringing the patient toward middle-class norms.
The patients I observed were, and had long been, far from the proper citizens imagined by home care. But the nurses I observed have worked in the neighborhood for so long they have ceased to see this difference. Thus, as they adapt the mandates established by the current health authority to make them function in the real lives of their patients, they do very little of the reeducation that is the implicit goal of much of the conventional patient education that accompanies home care. Instead of "teaching" patients how to take their medicine or change their drug patches, the nurses try to discover how patients have undertaken these activities in the past. Aware of the high level of suspicion of people in the neighborhood generally, they take pains to ask patients what help they need rather than assuming that the individual needs a particular set of information. Patients' learning in relation to accommodating medication schedules or understanding the importance of not missing doses always seemed to occur incrementally, or even, it seemed to me, incidentally. Unlike the newer nurses in the neighborhood, the long-term nurses actually developed their practice style years before the implementation of the current health authority scheme and before the neighborhood was declared a health emergency, thereby allowing for deviation in some clinical practices. Thus, the nurses work within a model that is much closer to an empowerment model of care than the neoliberal "self-sufficiency" model that has the practical effect of limiting the number of visits an individual patient is meant to receive. Indeed, as longtime participants in the "care" of this neighborhood, the nurses are highly attuned to the complex interconnections that individuals might maintain despite appearing to be totally socially isolated-by middle-class and home care standards, that is. Instead of conceptualizing their patients as a particular type, with a specific trajectory of illness and referral for care, the nurses recognize that the mosaic of services in the Downtown Eastside (DTES) offers many different entry points to, in particular, HIV services, and that the dense interconnections that outsiders view as pathological relationships of mutual use and abuse might at any moment bring them a new patient who needs information and referral to other services (see Giles 2006).
During my field study, I saw that it was often on the most exhausting days of the nurses' work that the most revealing interactions took place. On one very long day, after seeing the fifteenth of the twenty patients who would fill the day's roster, we stopped in at a shelter and entered the small room that the nurses were permitted to maintain there. This was a Friday, the day when the doctor makes her rounds through the neighborhood, and by common agreement it was the nurses' practice to rendezvous at the shelter and use the occasion to make a sweep of known and yet-to-be-known patients. One of the people on our list that day, "Dave," came to see the doctor because he was ready to start HIV antiretroviral treatment. His very request signaled to us that he was already fairly knowledgeable about HW He told a typically long and inconsistent story, the gist of which was that he had experienced unexplained weight loss a few years ago and then was shocked to discover he had HIV. He treated us to a story of his downward spiral and run-ins with the law that had resulted in a persistent bench warrant. We realized that he was trying indirectly to explain why he had not been receiving care, but why he should now be considered a good candidate for medication. He described his legal troubles as completely disabling: "I had a cloud over me, you see, I couldn't do anything." But this problem was resolved, and he had acquired a housing subsidy and a place at one of the nicer social housing units. In the story, he recounted living somewhere else, a slip in his neat narration of himself as on the way back to normal. We asked why he had decided to come back to our city, to which he responded: "The HIV community and amenities and help available." He specifically mentioned his case worker at the local AIDS society, and exclaimed: "Those girls really follow through!" He was very upbeat and looking forward to having his own place: "It's nice to have your own bathroom, and be able to sit at a kitchen table then go sit on a couch. It is those little things."
Dave's performance was quite clever, and it was obvious that while he was supposed to be receiving AIDS education, all he really wanted was a prescription for his medications. He clearly recognized the stereotypical case that he was supposed to embody-that of the down-and-out man who had "hit bottom," put his life back together, and was now ready to undertake the strictures (including appropriately maintaining a quite nice apartment) that would move him upward on the path to health and propriety. Although it cost him nothing, he made a mistake in his storytelling by showing too much familiarity with the local agencies; indeed, he had clearly been a client there and spoke of his caseworkers as if they were old friends.
In sharp contrast to Dave, who clearly had deep knowledge of the complex of services available to him, was another patient we saw at the ad-hoc shelter clinic, who was also already connected to a range of services, though this fact passed nearly unspoken because of her presentation as the victim of a beating. We saw this patient on an equally busy and complicated day, and we might easily have skipped over her because there didn't seem to be anything wrong with her-indeed, from the health authority point of view, she was not an appropriate patient because she was young, fully able bodied, and had no illness that required "home care." But as we were leaving the shelter, the day manager asked the nurses to see a young woman who couldn't have been over twenty and they agreed. She did not live in the neighborhood but had arrived at the shelter overnight and was expected to stay for a few days. She had injured her ankle and, because she was not completely mobile, she was accorded "bed rest" privileges; that is, she was allowed to spend the day in a "night use only" room because she was injured. In assessing her ankle, which seemed barely injured, it became clear that she had been in an altercation with her boyfriend and that he had stomped on her ankle. In the course of discussing where she might go for an X-ray, the nurses asked if she had a regular doctor. She gave a name and then said very casually, "That's who monitors my HIV meds." Although no one reacted, I discussed this moment with the nurses later, and they admitted they were shocked: after all of their years dealing with every kind of patient in this neighborhood, they too had been unprepared for an otherwise robustlooking teenager whose HIV was sufficiently advanced that she had been placed on antiretroviral drugs. They had also been blown away by the casualness with which she had offered the information. Apparently for this young woman, HIV was a relatively common condition that was not worthy of undue fuss or hiding.
This woman received her HIV care via a doctor who monitored her HIV medications. But, unlike Dave, who perceived a unique community populated by persons with AIDS, HIV care, and support workers, she normalized HIV in her world of bad boyfriends and periodic homelessness. Both individuals were knowledgeable about their medical conditions and were connected to HIV care, but through very different routes. The causes of their homelessness were also quite different. In Dave's case, a life of problems and an abrasive personality (and, likely, a psychiatric diagnosis) had left him in life circumstances in which his HIV providers were the warmest relationships in his life. The pleasant young woman found the shelter her best option after a violent run-in with her boyfriend-an interlude before going to friends or family or returning to him again. In neither case was traditional "patient education" appropriate, and indeed, in their own ways each patient asserted their knowledge of their own care needs. For these patients, and for others who aren't able to fully understand what is happening to them, the model of a patient returning from hospital to home with the helpful nurse explaining their new situation is clearly ludicrous.
Conclusion
In these examples I have tried to show that "clinic" is as much a disposition and a relationship as a particular place and time. In all likelihood, the reality of physical clinics helps underwrite the nurses' practice, if only through its stasis, inflexibility, and surveillance capabilities (versus the nurses' adaptability, mobility, and capacity to provide care without "seeing" what is happening around them). But in the care of the poor, at least in this case, it is clear that timing is everything; that relationships of care have very little intrinsic durability; that trust must be built and rebuiltor built in groups that are different from the middle-class care model.
When the Canadian government decided to try to address many different health system problems through increased utilization of home care, they created both an expanded mandate and a false expectation for the many urban nurses who were already practicing care among the poor. At its worst, this has resulted in thrusting new agents of the state into the lives (but less often spaces, since they have very few) of people with little capacity to reverse or redirect policy. But at its best, the very impossibility of localizing care in defined spaces, the very impossibility of "home care for homeless people," leaves this form of care in a kind of Wild West condition practiced by highly experienced and adaptable outlaw nurses whose care exceeds the systems' ability to police it precisely because its temporality is "quicker on its feet" than the health authority's algorithms and billing categories. While this leaves the nurses vulnerable to criticism and results in no increased staffing, the care that they can provide opens up new possibilities for understanding the transient "clinic" as a space of resistance to the otherwise unresponsive (to patients and nurses) new health systems.
Notes
I am extremely grateful for the patience, kindness, and huge depth of knowledge of the main two nurses that I followed, Susan Giles and Evanna Brennan. They have documented their work at the Web site wwwmultidx.com.
1 I should say something about what I am studying. In British Columbia from 2004 to 2007 I headed a research team examining the fit and lack thereof between services offered by various groups and agencies and the needs expressed by people living in a neighborhood heavily affected by poverty, unstable housing, and, in the last decade, HIV and hepatitis C. The project I worked on was titled Homecare for Homeless People with HIV, and it was supported by the Social Sciences and Humanities Research Council of Canada (grant no. 855-2003-0003) and the Canadian Foundation for AIDS Research (grant no. 016009) and approved through the ethics board of Simon Fraser University and the health authority in which I conducted the work. The tasks of the project included a study of the history of service placement in the neighborhood, including archival research and interviews with longtime providers and advocates; interviews of friendship networks; reanalysis of survey data generated in another study conducted by one of the coinvestigators; art-based community investigations of housing and health care issues, and issues of consent to care; and my own ethnographic work with the actual home care nurses. I entered the field from the point of view of these nurses, and from the outset I understood my work to be a clinic ethnography. I had conducted two previous clinic ethnographies-one a multisite team study of a set of methadone clinics; one a single-ethnographer study in a specialized HIV clinic-and I was interested in how such an approach would play out in this new setting.There were important differences from the more formal clinical settings in which I had previously worked. By definition, home care nursing takes place in a home; hence, this field of nursing is about managing the domestic and the medical. As I will note here, and have described at length elsewhere (Patton and Loshny 2009), the complication for the nurses in this context is their very unique and interesting negotiation of "home" among people who do not have homes by the conventional definitions of the "home care" model. The line between the "spacetime" of "clinic" and its "other" is blurred from two directions: in the constitution of "clinical time" in the home spaces of the homeless, and in the constitution of "domestic space" in the bleak places that are designated as "clinics" in shelters.
2 According to the informational Web site of the British Columbia health authorities, there are five health authorities that "govern, plan and coordinate services regionally within sixteen health service delivery areas and participate with ... one Provincial Health Services Authority, which coordinates and/or provides provincial programs and specialized services, such as cardiac care and transplants.... The structure, introduced in December 2001, modernized a complicated, confusing and expensive health care system by merging the previous 52 health authorities into a streamlined governance and management model" (Ministry of Heath Services 2009).
3 There are several kinds of nurses working in the neighborhood, and the residents make little distinction between their functions but rather recognize only the individuals, whom they sometimes like and other times dislike. I studied the home care nurses who work in an adult care unit of the regional health authority. The other neighborhood nurses are from much newer programs instituted in the wake of the area's declared HIV public health crisis in the late 1990s, and they include street nurses who work under the public health department (distinct from the health authority); clinic nurses stationed permanently at the two new clinics established by the health authority; nurses at the longer-standing clinic for native people, which has extensive day programs and frequently houses homeless people for a night; nurses attached to a shelter society; and several "methadone" nurses who are attached to the above facilities but function separately out of their own office within the facility.
It is important to recognize that home care nurses-both the functions of and many of the actual individuals-predate the health authority. To some extent the veterans do what they always have done, even when it does not fit entirely with the health authority's more recent but official mandate. When this results in enhanced attention to the patients, the nurses' activities are invisible to the health authority. But when doing what they always did results in overtime, or additional mileage, or acting outside their new scope of practice, the health authority's regulatory and actuarial structure kicks in, and the nurses come under scrutiny. I did not observe the nurses prior to the implementation of the health authority. However, based on my observations, I believe that while the nurses have refined their care practices as the health needs of the neighborhood have evolved, they are providing essentially the same care with the same logic as they did before the health authority was implemented. In my opinion, it is as much the disciplining result of the reconceptualization of their work, which has been accompanied by a structural inability to calculate costs and results to reach the obvious conclusion that more staff members are needed, as it is the changing needs (especially for HIV, hepatitis C, and drug addiction in general) of patients that places heightened pressure on the nurses providing home care in this neighborhood.
4 By definition, one is only palliative after one has received "acute" or "chronic" care that has failed to "save" the patient's life. In practice, people who are mainly "dying of old age" may also come under the aegis of "palliative care," but that is mainly because of the alarming rise in chronic illness in Western populations related to declining cardiovascular health and independent of increases in longevity rates. Our studied refusal to aggressively pursue all manner of preventative medicine has abandoned all but a modest few to emergent and chronic illness that will plague them from their middle years to the much later death that our advances in palliation have enabled.
5 The emergence of the diagnostic and actuarial category of "complex patient," described as an entirely new type of patient, represents both the admission by the health system that there is not a simple equation between patient and disease and the reinstantiation of precisely that equation, but with a far more complex calculus.
6 One of the benefits of working in community nursing, as the home care nurses now prefer to call their subdiscipline, is that the nurses are at some remove from doctors. There are quite a few older nurses in this unit, and over lunch, when I ask them how they came to work there, they tell me stories about their stifling years of work as ward nurses. Crypto-feminists all, they begrudgingly appreciate the fact that their main prescribing physician is a woman, and she makes house calls on Mondays and Fridays. These doctor-nurse days were particularly interesting opportunities for me to observe the subtle attitudes, styles, and speech patterns that define "clinical practice" as doctorly or nursely. On several of the occasions when we were all on the road together, patients, some of whom have known me for a while, ask me: Are you a doctor or a nurse?" A small triumph for women's rights is that it is now imaginable that a woman might be a doctor. It is also a small tribute to sexism, since it is likely that my general practice of watching others work has signaled me as "not a nurse."
7 All undocumented quotes are from my field notes and interviews conducted during the course of the research as outlined in note 1.
8 It is very common for patients to spontaneously argue that their drug use is their self-managed form of medication. As I show in a later passage, one patient claimed that he had to smoke crack before having a bandage changed because that was his form of medication and anxiety reduction. As anthropologists and sociologists who investigate drug cultures almost uniformly argue, "illegal drugs" are almost always viewed by users as being closer to pharmaceuticals than the law imagines.
9 People who live their lives bouncing between living settings have an extremely difficult time hanging onto their belongings. A few have specific people (sometimes a family member) who agree to keep their most prized things when they go to jail or are kicked out of their housing. But the most peripatetic individuals just go through endless cycles of replacing clothing and personal items time and again; their structured inability to hold onto "belongings" is doubled by their overwhelming lack of "belonging."
References
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Griffiths, H. 1996. "Nursing in the urban core." NursingBC(November-December): 14-16.
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