THE HIDDEN HEALING OF HOT SPOTTING: ADDRESSING STRUCTURAL VULNERABILITY AT THE GROUND LEVEL by ALYSA DUPUY HAAS B.F.A., University of Utah, 2007 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Master of Arts Anthropology Program 2014
! "" This thesis for the Master of Arts degree by Alysa DuPuy Haas has been approved for the Anthropology Program by John Brett, Chair Sarah Horton Stephen Koester June 23, 2014
! """ Haas, Alysa DuPuy (M.A., Anthropology) The Hidden Healing of Hot Spotting: Addressing Structural Vulnerability at the Ground Level Thesis directed by Associate Professor John Brett. ABSTRACT It has been shown on both local an d national scales in the US that there is a small number of people whose healthcare costs make up a significantly disproportionate amount of total healthcare costs Much of the costs that these "high utilizers of care" incur come from emergency department visits and inpatient hospital admissions for health problems that would be treated more economically by primary and specialist care. Numerous "hot spotting" intervention programs have been created over the last decade in attempts to both lower costs and im prove the quality of care and health outcomes of "high utilizers" by actively connecting patients with the existing primary and specialist care system and the social services system. Initial quantitative analyses have shown that this approach appears to la rgely accomplish these aims However, there is a need for complementary research that seeks to understand the processes behind such important outcomes. This study takes a closer look at one program's process of connecting patients to services, using "structural vulnerability" theory to frame its findings. Qualitative data from open ended, semi structured interviews with 17 participants (including patients, patient family members, program staff, and healthcare providers) were coded using qualitative an alysis software. Resulting themes are used to first describe the problems faced by both patients and providers, emphasizing how these problems are exacerbated or
! "# caused by structural factors. Second, the program's process of connecting patients and provide rs is illustrated, paying particular attention to themes that showed discrepancies in participant responses and that point to the existence of incidental services provided by outreach workers. Ultimately, results show how the connection process is more tha n simply training patients and providers to work together, but in fact requires bandaging and sometimes healing "structural wounds" and other systemic problems before productive connections can be made and sustained. The form and content of this abstract are approved. I recommend its publication. Approved: John Brett
! # DEDICATION For my parents, who brought me into this world as an academic. "Mommy, are you done with your thesis, yet?" And now I am finally done, too.
! #" ACKNOWLEDGMENTS I would like to thank John Brett for his tireless guidance, optimis m, and sense of humor throughout this process, and for his support all through my graduate education. Thank you to Sarah Horton for her extraordinary teaching and inspiring scholarship, and especially for inviting me to collaborate on the migrant health project (an invaluable learning experience), as well as for special guidance on this project. Thank you to Steve Koester for his passionate teaching and commitment to the power of ethnography, and for foreve r changing the way I think about the most vulnerable populations. Thank you also to Connie Turner for being an unwavering source of support and encouragement, and to the entire Anthropology faculty for its commitment to the students above all. I would also like to express deep gratitude to the individuals who chose to participate in the study and who so bravely shared their experiences with me so that others might learn from them and take informed action. This document is a far cry from all of what might be learned from the stories they shared, and so my aim is to keep listening and keep learning. Thank you very much to the high utilizer program for its support and en thusiasm for thinking outside the box including hiring an anthropologist. Thank you to all of the program staff for allowing me to come into your world and for sharing with me the inspiring work you do. Lastly, thank you to my dear family and friends who have supported me through this process and who have waited so patiently for me to finally fi nish.
! #"" TABLE OF CONTENTS CHAPTER I. INTRODUCTION ................................ ................................ ................................ .. 1 II. BACKGROUND ................................ ................................ ................................ .... 4 Patients with Complex Care Needs ................................ ................................ ......... 4 Medical Authority ................................ ................................ ................................ ... 5 Constraints for Providers ................................ ................................ ........................ 6 Structural Violence, Structural Vulnerability, and Syndemics ............................... 8 High Utilizers of Care and "Hot Spotting" ................................ .......................... 14 Patient Centered Care ................................ ................................ ........................... 20 III. METHODS ................................ ................................ ................................ ........... 24 Sampling and Recruitment ................................ ................................ .................... 25 Data Collection ................................ ................................ ................................ ..... 27 Data Analysis and Interpretation ................................ ................................ .......... 29 Limitations ................................ ................................ ................................ ............ 29 Human Subjects Protection ................................ ................................ ................... 30 IV. FINDINGS ................................ ................................ ................................ ............ 31 Structural Wounds and Other Problems ................................ ............................... 31 Complex Care Needs ................................ ................................ ...................... 31 Difficult Experiences in the Healthcare System ................................ ............. 39 The Program Intervention ................................ ................................ ..................... 48 Connecting Patients and Providers in Collaborative Patient Centered Care ................................ .............................. 49 Hidden Healing ................................ ................................ ............................... 52
! #""" V. DISCUSSION ................................ ................................ ................................ ....... 68 REFERENCES ................................ ................................ ................................ ................. 75
! 1 CHAPTER I INTRODUCTION Amid the current storm of discussion, debate, and concern surrounding the US healthcare system and healthcare policy, there lies one topic that has recently gained significant attention from policymakers and healthcare payers. It has been shown on both loc al and national scales that there is a small number of people whose healthcare costs make up a significantly disproportionate amount of total healthcare costs (Cohen and Uberoi 2013; Gawande 2011). These patients are often referred to as "high utilizers of care" and have become a topic of concern in efforts to reduce increasingly high healthcare expenditures in the US. Analysts have observed that much of the costs these patients incur come from emergency department (ED) visits and inpatient hospital admissi ons for health problems that would be treated more economically by primary and specialist care. At the same time, high utilizers of care very commonly are patients with multiple chronic diseases and behavioral health problems as well as a number of social barriers to personal stability, such as lack of adequate housing, income, or social support (Gawande 2011). This array of medical and social needs is commonly referred to in medicine as "complex care needs," and is not only associated with high healthcare costs but also poor quality of care and health outcomes (Wolff et al. 2002; Freund et al. 2010). Thus, many healthcare organizations, government bodies, and healthcare advocacy groups have begun putting significant effort into attempts to simultaneously in crease quality of care and health outcomes for high utilizer patients in ways that also reduce high cost healthcare use through modes like ED and hospital admission for non acute health problems.
! 2 Numerous intervention programs have been created over the l ast decade to accomplish these goals, primarily by using program staff to actively connect high utilizer patients with the existing primary and specialist care system and the social services system, in lieu of previous acute services use patterns. The inte nt is that these ground level systems can then more efficiently and effectively serve these patients' complex needs, not only decreasing costs but also increasing quality of care and health outcomes. Initial quantitative analyses have shown that this appro ach appears to largely accomplish these aims ( Green et al. 2010; Okin et al. 2000; Coburn et al. 2012; Linkins et al. 2008) However, there is a lack of information in current literature about the variety of processes used to connect patients to such servi ces and the details of what components these processes include. Complementary research that seeks to understand the processes behind such important outcomes is needed for several reasons. First, if such interventions are in fact as successful as they appea r to be from initial studies, a full understanding of the exact components that make up such efforts is needed to inform the implementation of future programs. Second, with defined program components from a collection of programs, cross program analyses ca n be performed to uncover program attributes that are associated with the best outcomes. Third, understanding what connecting patients to services actually looks like on the ground can contribute to a better understanding of what patients with complex care needs actually need in order to move toward healthier lives. This vulnerable population appears to be served well by high utilizer intervention programs, however a more in depth understanding of their needs may contribute to a clearer path to rectifying t heir vulnerability and leading them to stable, fulfilled lives.
! 3 This study focuses on the third area of importance. The project aims to take a closer look at one program's process of connecting patients to services in order to identify what these component s can tell us about high utilizer patient needs as well as the larger system problems that feed into them. Using previously collected qualitative data from a descriptive program evaluation, I first describe the problems that both patients and providers fac e, emphasizing how these problems are exacerbated or caused by structural factors. I then describe the program's process of connecting these patients and providers, paying particular attention to the gray areas where participant responses showed some discr epancy, and ultimately showing how the connection process is more than simply training patients and providers to work together, but in fact requires bandaging and sometimes healing structurally inflicted wounds and other systemic problems before productive connections can be made and sustained. Through this analysis, I shed light on the existence of such structural wounds and how some aspects of patients' structural vulnerability appear to be directly addressed by program staff's incidental attention to the se wounds. Thus, this study works to use and build on the recent theoretical development of the "structural vulnerability" concept in medical anthropology.
! 4 CHAPTER II BACKGROUND Patients with Complex Care Needs Amid the epidemics of chronic disease in th e U.S., there exists a subgroup of the chronically ill population that experiences multiple chronic diseases simultaneously a phenomena that is medically referred to as "comorbidity." Patients with comorbidity are often elderly Medicare patients or adult M edicaid patients with not only a host of chronic medical problems but also additional "non medical conditions" (Freund et al. 2010:1) and "psychosocial challenges" (Bodenheimer and Berry Millett 2009:1). The result of this mix of multiple medical problems with social/structural barriers is often referred to as "complex care needs." Patients with complex care needs experience rather desperate medical realities. It has been shown that their care is poorly coordinated, they are more at risk for complications i n inpatient settings (Wolff et al. 2002), and, in the end, their health outcomes are "suboptimal" (Freund et al. 2010). From the provider perspective, patients with complex care needs are overwhelming. Their needs extend beyond the realm of providers' exp ertise as well as the treatment and time parameters they are given (Good et al. 2003). In ethnographic interviews, providers have described these patients' social/structural barriers as "socially complex problems" or "difficult social situations" (Good et al. 2003:601 604). This complexity and difficulty experienced by patients then feeds into the complexity and difficulty providers experience in trying to treat them. These patients may become known simply as "difficult patients," a term that can imply not only the patients' difficult situations and the providers' difficulties in treating them, but also the incidental notion
! 5 that patients are willfully "being difficult" and "non compliant," or simply are unable to be helped commonly referred to as "train wre cks" (Good et al. 2003:603 604). These reactions are fueled additionally by the fact that patients with complex care needs may not communicate in a way that satisfies the "medical gaze" the way in which medical providers favor "patients who are willing to become part of the medical story [providers] wish to tell and the therapeutic activities they hope to pursue" (Good et al. 2003:595). Providers are in fact taught to seek specific kinds of information from patients that will help them efficiently address t he medical problems they are trained to address, and if patients fail to provide that information in favor of telling their own story about their most pressing needs (i.e. social barriers such as housing) those patients become frustrating and increasingly "difficult" in the eyes of providers (Good et al. 2003). Medical Authority The effect of the "medical gaze" is then experienced by patients as a dominating "medical authority" (Balshem 1993) that limits and devalues patient knowledge, opinions, and input in decision making about their own health. As one provider explained in an ethnographic interview, "[our job] is relearning to listen to patients without listening to themYou learn to do a better job by not listening to your patients" (Good et al. 2003:60 0 601). Thus patients, and even whole populations, are not listened to, often to the detriment of health outcomes. In Balshem's ethnography about cancer in an American industrial town, she describes how "lay interpretations are cast as illegitimate and inc onvenient counterparts to real medical knowledge," but demonstrates how it is only the townspeople, not the doctors, who present the idea that industrial pollution may be affecting the high cancer rates (Balshem 1993:7). Good et al. (2003) demonstrate how
! 6 racial and ethnic minorities are often provided poorer quality care simply because they are more "difficult" to listen to than their non minority counterparts who communicate within the construct of the medical gaze. Within the clinical encounter, the powe r imbalance between provider and patient is deeply engrained. The physician holds knowledge while the patient does not and must accept openly the biomedical knowledge transferred to him in the form of diagnosis and prescription. This construct gives rise t o an "activity passivity" binary in which the doctor is active in solving the patient's health problem while the patient is passive, receptive only to the providers' input, as in a scientific experiment (Loustaunau and Sobo 1997:133). Alternatively, biomed icine sometimes uses a "guidance cooperation model," which does acknowledge a patient's agency to take action, but still maintains that the patient's role is in reception of the doctor's knowledge and subsequent compliance (Loustaunau and Sobo 1997:133). Constraints for Providers While providers could be cast as the villain in this picture, ruthlessly wielding medical authority over already vulnerable patients, the work of critical medical anthropologists has cast a more complex view. Providers have explai ned in ethnographic interviews that their training to act out values of the medical gaze and medical authority is driven largely by one purpose to maximize success within extremely limited treatment and time parameters (Good et al. 2003). These limitations have been greatly tightened in the past two decades due to cuts in Medicaid funding and the transition of Medicaid to privatized managed care (Horton 2006). While Medicaid managed care has been presented as a way to reduce costs and improve quality of hea lthcare within what is
! 7 often viewed as the "wasteful and chaotic public sector" (Willging 2005:84), several ethnographic studies have uncovered the hidden break down of this approach that ultimately harms patients through the further constriction of provid ers (Boehm 2005; Willging 2005; Horton 2006; Horton and Lamphere 2006). Medicaid managed care not only reduced reimbursement rates to provider institutions (due to the addition of a new administrative layer of managed care organizations) (Horton and Lamphe re 2006) but also added intensified "efficiency" and "accountability" performance measure demands on providers that have been shown in reality to decrease time spent with patients (who often have complex care needs that require substantial time) and ultima tely, quality of care (Horton 2006). Within already constrained safety net institutions that are committed to serving all patients including those with complex care needs (through long standing institutional values of advocacy work), the tension between c omplex patient needs and the constraints of funding and time have been shown to result in either providers working unpaid hours to address patients' complex needs, or in transferring the burden to patients by limiting or denying care to the uninsured and p atients with complex care needs (Horton 2006). In either circumstance, providers' advocacy values are apt to buckle under the pressure and providers may unconsciously turn to "victim blaming," as in the case of labeling patients "difficult," or even as "un deserving" (Horton 2006:2712). The phenomena of "victim blaming" appears to occur as a coping mechanism for providers who otherwise feel powerless to do enough for patients and therefore feel inept; to relieve this feeling of failure, they place blame else where (Willging 2005:97).
! 8 Thus, by understanding the context within which providers operate, it becomes clear that providers' poor treatment (both in terms of medical treatment and personal treatment) of patients with complex care needs is not only mediat ed by their training to utilize the medical gaze for efficiency of care but also by the additional constraints of limited funds, and therefore time, allowed by the current Medicaid structure. This lies in contrast to efforts in the literature on disparitie s in healthcare that focus on the "unconscious bias" or prejudices that providers transmit to patients through poorer care. The Institute of Medicine published an extensive and influential report focused on such research (Smedley et al. 2003), centering th e issue of healthcare disparities on the factor of provider bias while neglecting consideration of political economic contexts (Horton 2006). These kinds of "cultural" factors, such as unconscious prejudice, are certainly important aspects of the problem o f healthcare disparities. However, the work of critical medical anthropologists, as described above, has worked to shift academic dialogue around this issue to a more structural level that seeks to understand the contexts that mediate biased behavior of in dividual providers. Research focused on individual beliefs and behavior point toward solutions that focus on provider training and monitoring. However, taking a view of the provider context calls for much broader solutions (Horton 2006:2703). Structural Vi olence, Structural Vulnerability, and Syndemics Thus, consideration of the factors that broadly affect patients with complex care needs illustrates a multi layered reality that goes far beyond simple biological problems in individuals or individual choices but rather takes into account the social and political forces that exacerbate and/or produce these complex care needs. Such forces have been
! 9 described in the social science literature as aspects of an invisible structure, made up of multiple systems, tha t together work to silently commit violence on vulnerable individuals and populations. "Structural violence" is a phenomenon that occurs outside the conscious action of any individual or group, but rather, takes place unconsciously through norms and legiti mized systems accepted in society. This concept extends from the work of mid twentieth century peace researcher Johan Galtung and liberation theologists. Structural violence theory has been utilized largely to identify the contextual forces that mediate in dividual behaviors, thus working to shift accusations of blame away from the individuals who are the victims of this violence and instead toward the problematic systems that ultimately cause harm. This complicates our understanding of agency, showing how t he free will of individuals is in reality severely limited by sociopolitical context. Work on structural violence thus raises the need for change at the systems level, in contrast to the common approach of attempting to change the behavior of individuals ( Quesada et al. 2011; Farmer 2013). Medical anthropologists have used structural violence theory to describe "socially structured patterns of distress and disease" in multiple areas of health research (Quesada et al. 2011:341). With this concept, illness b ecomes viewed not as a problem that springs from within the individual but as the literal embodiment of the structural violence endured by marginalized individuals (Horton and Barker 2010; Farmer 2013:30). Thus, the question arises about where "care" is mo st needed in the hands of healthcare providers, or in the hands of policymakers that shape structures? While the forces of structural violence include cultural prejudices, the literature has focused strongly on economic inequality and the poverty it produ ces as the most
! 10 insidious perpetrator of such violence (Quesada et al. 2011:341). Farmer (2013:42 50) identifies the intersection of multiple "axes" of structural violence, including gender inequality, racism, discrimination based on immigrant status and s exuality, and poverty. However, he clearly underscores the way that poverty consistently cuts across other realms of inequality as the most damning factor, making "the world's poorthe chief victims of structural violence" within every category (Farmer 201 3:50). Farmer explains that while this reality has recently come to be discussed in the global health arena (the World Health Organization stated in a 1995 report that poverty is the greatest contributing factor to mortality), several factors have largely kept researchers and policymakers from addressing poverty's primacy as a locus for investigation and change (Farmer 2013:50). He points out that the US is rare amongst industrialized nations in failing to record socioeconomic status with health data, often instead recording only "race" or ethnicity, and thus, the factor that could demonstrate poverty's effect on health is not available for analysis by the nation's epidemiologists. Farmer proposes that this tendency to ignore the economic component derives f rom the invisibility of the poor in society (Farmer 2013:50). A related conceptualization of structural violence and its relation to disease has been laid out by Merrill Singer (1996). In his concept of "syndemics," Singer casts the forces of structural vi olence (e.g. poverty; discrimination) as epidemics that operate alongside other epidemics (e.g. HIV; hepatitis; tuberculosis; and other diseases commonly thought of in public health as epidemics) which when co occurring in the same individual then interact and augment the effects of any one single epidemic (Singer and Clair 2003). Thus, two or more co occurring diseases can lead to "enhanced infection
! 11 due to disease interaction," and at the same time, the co occurrence of a structural force like poverty (an d its related health problems, like malnutrition, homelessness, poorly ventilated housing, and stress) in the life of that individual can also interact synergistically with those diseases and lead to even worse outcomes (Singer and Clair 2003). Thus, the c oncept of "syndemics" presents structural violence less as a context and more as one of many potentially co occurring problems interacting to affect an individual's health. In this way, it does the important work of putting structural problems like poverty and discrimination squarely on the same public health docket as disease epidemics like HIV, and forces of structural violence then become issues that public health efforts are beholden to address with the same vigor as they tackle disease. A group of medical anthropologists has recently presented a new concept that builds on the structural violence concept. Quesada et al. (2011) introduced the notion of "structural vulnerability" in a special issue of Medical Anthropology devoted to the topi c. These authors use the new term to identify the vulnerability that individuals experience in the presence of structural violence. They explain that the need for such a concept appears largely in the clinical setting, where healthcare providers meet face to face with individual patients experiencing this vulnerability. It appears that providers may be more successful in caring for patients if they can recognize the realities of patients' vulnerability and work with patients to design treatment plans that a re likely to be most effective in the context of those constraints (in contrast to treatment plans that ignore structural constraints and are therefore ineffective, and often alienating to patients) (Holmes 2006; Holmes 2011). Quesada et al. (2011:341) wri te that the term "structural violence" is often too much of a "political economic abstraction" for on the ground
! 12 healthcare providers who have little power if any over political economic forces but who are equipped to treat the individuals in front of them From this perspective, the term "structural violence" floats over the heads of providers, identifying only a mystical, abstract force without any connection to the patient. However, "structural vulnerability" does the important work of making the reality of structural violence meaningful to providers, by bringing the focus back to the individual patient and the vulnerability he experiences. Thus, "structural vulnerability" immediately applies to the provider's patient and becomes relevant to the provider, whose defined task is to design an effective treatment plan for the individual sitting in their exam room. The provider can acknowledge that this patient is vulnerable and consider how this vulnerability should inform the mode of treatment, perhaps even u sing a "structural vulnerability checklist" (Quesada et al. 2011:350). The provider may not be able to change the structural forces causing the vulnerability, but at least she can do her job, which is to attend to the patient who has been wounded by these forces. Also important to the structural violence discussion, medical anthropologists have done significant work that sheds light on the constrained contexts of individuals in social hierarchies. This work shows how structural violence can be carried out t hrough the actions of individuals existing at higher levels in a hierarchy who are themselves constrained by structural forces. For example, healthcare providers may be constrained by structural forces, making their ability to care for patients constrained as well, and thus, ultimately hurting patients. The effect of structural violence at multiple levels like this has been best illustrated in medical anthropological theory in two ways. Horton (2006) uses political scientist Michael Lipsky's concept of "st reet level bureaucracy" to
! 13 show in her research in the healthcare system how well intentioned healthcare providers that are held to strict "productivity" standards may be squeezed by such pressure to not only blame "difficult" patients for their needs but also to take "shortcuts" in order to meet productivity demands that ultimately decrease quality of care for patients (as described above). A second conceptualization of how structural violence plays out in hierarchies is demonstrated by Holmes (2011) in hi s engagement with the "structural vulnerability" concept. Holmes shows in his research on farm hierarchies that vulnerability exists at all levels as a "continuum of structural vulnerability" (2011:445), from farm worker to crew boss all the way up to grow er, with each increasing level experiencing decreased vulnerability but that nonetheless constrains all individuals to some extent and is ultimately translated back down the hierarchy to be experienced most intensely by those at the bottom. Both of these c onceptualizations draw attention to the way that individuals who hold a large amount of social "privilege" are still affected by structural forces and that the power these individuals appear to hold may in reality be quite limited in ways that harm individ uals under them. In my analysis, I use the related concepts of structural violence, syndemics, and structural vulnerability to contextualize my findings from the data I collected within the realm of "medical hot spotting," described below. As will be eluc idated, these findings contribute to further understanding of how structural vulnerability is experienced in the healthcare system and how it is being addressed in one intervention. In discussing the ways that structural vulnerability is being addressed on the ground, I use the term "structural wounds" to describe the specific results of structural violence that can be
! 14 observed in individuals and which are the physical, emotional, and cognitive manifestations of the condition called structural vulnerability High Utilizers of Care and "Hot Spotting" It is clear that health outcomes associated with chronic disease in the US are troublesome. At the same time, American healthcare costs are also highly concerning, standing as the highest relative to GDP amongst all other developed nations (Horton et al. 2014:2). In light of the cost crisis, discussions of how to lower healthcare costs on multiple fronts of the system have become a prominent focus for policy makers and health organizations, from the Affordable Ca re Act to more local efforts to decrease spending. A major source of concern is the population of patients with complex care needs, as discussed above, due to their need for multiple types of care and services. While elderly Medicare patients with complex care needs have been described as more understandable in terms of their use of high cost medical services like hospitalizations (Bodenheimer and Berry Millett 2009), there is a population of adult Medicaid patients with complex care needs who are increasi ngly referred to as "high utilizers of care." Their use of high cost services, particularly the emergency department (ED), are described as unnecessary alternatives to use of primary care, and thus the term "high utilizer" places emphasis on patients' use of services, rather than focusing on their needs (as implied by the older term "patients with complex care needs"). The term "high utilizers of care" can be used, however, to encompass all populations (within Medicare, Medicaid, and other systems) that con stitute a small percentage of the population whose healthcare costs account for a surprisingly large percentage of overall healthcare
! 15 spending. A study of national healthcare spending in 2010 found that the most costly 1% of American patients incur 21% of total healthcare costs (Cohen and Uberoi 2013). High utilizers of care have also been referred to as "frequent flyers," "frequent users," "super utilizers," or "hot spotters," a term coined by Atul Gawande in a highly influential New Yorker article that co vered several high utilizer intervention programs and brought the concept of "hot spotting" to the forefront of healthcare transformation discussions (Gawande 2011). The centerpiece of this article is Gawande's description of the Camden Coalition of Health care Providers, created by physician Jeffrey Brenner who discovered "hot spots" of high utilizing patients that together made up only 1% of patients in Camden, New Jersey's medical facilities, but accounted for 30 percent of costs (Gawande 2011:3). Brenner went on to form an organization in 2002 that has pioneered a new mode of providing healthcare for these populations by using a multidisciplinary team of medical professionals, social workers, and community health workers to provide healthcare and care man agement in patients' community and home settings (Green et al. 2010). Similarly, in 2003, six counties in California were funded by the California Endowment and the California HealthCare Foundation to develop new approaches for "addressing the comprehensiv e health and social service needs of frequent users of emergency departments" (Linkins et al. 2008:1). In the past decade, many other interventions throughout the US have been created along similar lines to address the population of patients with both inte nse complex care needs and also high costs of healthcare. The overall goals of these efforts then are to not only reduce unnecessary healthcare costs, but also to better serve these high need patients (Hasselman 2013).
! 16 Approaches in high utilizer programs vary widely. However, a review of the current literature on such programs yields several common characteristics (Green et al. 2010; Gawande 2011; Hasselman 2013; Linkins et al. 2008; Okin et al. 2000; Coburn et al. 2012). Most programs yielded decreases i n patient healthcare costs, with some studies showing decreases even after accounting for program costs (Green et al. 2010; Okin et al. 2000), and some including data that demonstrated improved health and social outcomes (Coburn et al. 2012; Okin et al. 20 00; Linkins et al. 2008). Some authors also identified common characteristics of high utilizer populations. For example, Hasselman (2013:4) recorded that while populations appeared quite diverse across multiple programs, one common characteristic was a pre valence of childhood trauma experience. Other common population characteristics included: substance dependency; mental health problems; chronic disease; and homelessness. However, most literature focuses on describing intervention components. Most programs were designed to be temporary in the lives of patients, with only one program that serves elderly patients providing program services through the end of life. The primary aims of programs included: reducing costs/utilization of expensive services; connect ing patients to primary care; connecting patients to substance dependency and mental health services; reducing patient homelessness; enrolling patients in Medicaid; and systems change for care coordination. Many programs rely on a team approach, with each program varying slightly in team composition, including physicians, nurses, social workers/case managers, psychiatrists, community health workers/patient navigators, peer counselors, attorneys, and frontline administrative staff. In contrast, some programs rely more on a key individual, such as a social worker/case manager/care manager or a nurse.
! 17 A very common characteristic of programs was that most are community based, allowing program staff to conduct outreach with patients in their homes and other comm unity settings, in addition to institutional settings. Along with this geographic flexibility, some programs also allowed their staff the flexibility of time and approach needed to work with a highly diverse high utilizer population. Most programs heavily stress efforts to connect patients with healthcare providers and social services, and often program staff "come to be viewed within the community as the main connector" (Hasselman 2013:7). Additional actions taken by program staff when interacting with pa tients included: collaboratively establishing care plans; and educating patients on self management and system utilization. Services provided directly by programs included: transportation services; housing vouchers and other supplementary vouchers (for foo d, phone, etc.); monitoring and managing symptoms and medications; making appointments for patients; crisis management; and supporting patients in building coping skills. Some authors noted the potential for strain on program staff, given the intensity of patient needs, and the strain can be exacerbated by large caseloads. Some authors also pointed out the larger system level problems that lie beyond the reach of such programs, including: multiple problems with the existing healthcare system (e.g. inabilit y to share data for efficient care coordination; barriers to coordinating with non traditional providers; societal valuing of expensive care; treatment orientation versus prevention orientation and the associated financial implications); lack of access to mental health care; lack of enough housing; lack of enough substance dependency recovery treatment
! 18 and accompanying housing; and the larger contextual factors of poor education and lack of jobs. However, one author pointed out the aim of a group of progra ms to "address not only individual level behaviors, but also the fragmentation and service delivery silos that exist within county systems of care," thus "stimulat[ing] the development of a comprehensive, coordinated system of care to address the needs of frequent users" (Linkins et al. 2008:3). "Systems change" efforts by these programs centered largely around: increasing awareness across community stakeholder organizations of the realities and needs of high utilizers; implementing new practices of care co ordination across different healthcare systems; collaborating on larger efforts across stakeholder organizations to establish a sense of collective will; making housing a priority in programs and among partners; streamlining billing and reimbursement proce dures; and changing policies so high utilizers can more easily make appointments and access care (Linkins et al. 2008). Results from my qualitative program assessment showed that the program that is the subject of the present study shares many aspects with other hot spotting programs, and is also unique in some ways. In order to reduce unnecessary costs and better serve high need patients, the program's primary approach is to facilitate collaborative relationships between patients and providers, thus helpin g to implement the deliberative model of patient centered care. The program utilizes a multidisciplinary team of medical professionals to consult about cases, but primarily uses outreach workers placed individually in area clinics to facilitate these patie nt provider relationships. The program highly emphasizes the need for a comprehensive approach to health, connecting patients
! 19 with primary care, medical specialists, alternative therapies, and a range of social services. Outreach workers are allowed a larg e amount of flexibility in terms of time and approach, particularly in their ability to meet with patients both in the clinic as well as in the community (e.g. in their homes). Overall, these programs all focus primarily on actively connecting high utiliz er patients with the existing ground level healthcare and social services systems (as a means of minimizing use of acute healthcare services), whether that is by bringing providers directly to patients, or by intensively working with patients to bring them to ground level providers of care and services. Particularly in the latter case, the question of what this patient provider connection actually looks like and the processes required to accomplish connection remain unanswered. As some authors noted, the co nnection process appears to be complex (Hasselman 2013:7; Okin et al. 2000:607). Okin et al. describe the challenge of connecting patients with providers: It has been assumed that the primary challenge with high users of the ED is to simply link them with primary care providers. In practice, linkage proves to be a more complex and continuous endeavor. These patients have great difficulty keeping appointments. Theyare too preoccupied with the dangers and challenges of living on the streets to make health ca re a priority, are submerged in the chaos of their substance abuse and/or emotional problems. Many of these patients have difficulty trusting people and are so frustrated with past attempts to access health care that the case managers needed to maintain c onstant vigilance and exert vigorous efforts to facilitate the connection of their patients to medical providers. such linkage was probably only one of the factors that accounted for the outcomes described [Okin et al. 2000:607] In fact, the details of the processes used to connect patients to providers and services were not described in detail in any of the literature. Some authors identified the importance of program staff focusing on patient engagement strategies, such as building rapport and establis hing trust. Most authors also pointed to the importance of program
! 20 engagement and collaboration with providers of care and services, both individually and institutionally. However, the ways that these engagement processes actually play out in practice has not been described in the literature. This study aims to take a closer look at the connection process in one program to gain a better understanding of its complexity. Patient Centered Care The long criticized uneven power dynamic characteristic of biomedic ine, emphasizing the providers' correct knowledge and, by default, casting any knowledge the patient may contribute as incorrect, has recently become a central target for change in health care. Transformations have attempted to "shift to patient centered c are[which] deemphasizes the idea of compliance and stresses participation" (Loustaunau and Sobo 1997:135). In practice, this might range from something more akin to the "guidance cooperation model" (an education model) to a more genuinely democratic mode, such as the "deliberative model" in which "both parties [physician and patient] would engage in active discourse, which would include the patient's values, perspective, and agreement in treatment decisions," thus giving equal value to the patient's experi ence and associated knowledge (Loustaunau and Sobo 1997:134). "Patient centered care" has been defined formally in the literature in terms of the latter ("deliberative model") in which both patient and provider actively collaborate and has been presented a s the "optimal doctor patient relationship" (Loustaunau and Sobo 1997:134). The term "patient centered care" is currently one of many buzzwords in health care reform efforts. As with many of these new concepts, there are multiple interpretations and uses o f the term, and it is not always clear the intended meaning behind each use. Furthermore, "patient centered care" is a term fraught with the potential
! 21 for abuse because of its particular wording. In one sense, it is used to describe healthcare provision th at encourages patient agency within the context of a supportive provider relationship, while in another sense, it connotes a centering of focus on the patient and can therefore be utilized as a means of shifting attention in reforms to patient responsibili ty (while letting providers, payers, and systems walk free). The high utilizer program that is the subject of this study has fully established the deliberative model, or collaborative patient centered care, as the centerpiece of its efforts. I describe her e a variety of ways the term "patient centered care" is currently being used to make clear the meaning used by the program and in this study. Most broadly, the term is used to reference increased patient agency (whether that be cast as dignity, freedom, r esponsibility, or any number of other interpretations of the idea of agency) accompanied by an increase in the value of that agency. This agency includes both patient knowledge (expression of opinions) and patient action, and each of these can be interpret ed in multiple ways: An increase in the value of patient knowledge can include the contribution of patients' opinions in decision making with their providers, as in the deliberative model. However, it is also being used to refer to the increased valuing of "patient reported information" as a new data source for objectively measuring "quality" in health care (Millenson and Macri 2012:1), as exemplified by several mandates within the ACA, particularly the establishment of the Patient Centered Outcomes Researc h Institute (Kaiser Family Foundation 2013). Additionally, the value of patients' knowledge and opinions has been referenced in terms of marketplace concepts of healthcare (Millenson and Macri 2012), in which patients are cast as knowledgeable decision mak ers free to
! 22 make their own choices about providers and who are predictable in their tendencies to choose efficiently in line with economic models of supply and demand (Horton and Lamphere 2006). Interpretations of the patient action aspect of increasing a gency in patient centered care have also ranged widely. In the deliberative model, increased patient action describes the role a patient takes on as an actor, alongside their provider, in taking steps to improve their health. This gets at notions of "makin g healthy choices" and "behavior change," and describes a process of increasing "patient engagement" (Hibbard and Greene 2013). However, it has also been used to describe responsibility laden ideas of "self management" and family responsibility to provide care, as in the "guided care" medical home model and the "information therapy" concept of patient education, both of which have been presented as "patient centered" (Alliance for Health Reform 2010). These approaches tend to focus on educating patients an d family members, or motivating them and building confidence all of which work to build on a patient's "baseline" level of "patient activation" (Millenson and Macri 2012:1). In general, discussions on patient centered care are focused more on patient behav ior change than on provider behavior change. This is exemplified by current interest in "patient engagement" (Alliance for Health Reform 2010), and what has been presented as the locus requiring repair in order to achieve this engagement "patient activatio n level" (Hibbard and Greene 2013). Defined as a measure of a patient's "willingness and ability to take independent actions to manage their health and care," patient activation can be changed by motivating and educating patients (Hibbard and Greene 2013: 207).
! 23 Again, the deliberative model of "patient centered care" is defined by shared decision making and shared action between patient and provider indeed a collaborative effort. This model, which is used by the present program, calls for both an increase in patient agency as well as the full engagement of provider to meet the patient in the middle to contribute knowledge and action, and to take responsibility, as well. This collaborative model thus provides a solution to the long standing ineffective and a lienating approach of medical authority. The program studied here largely appeared in the program assessment project to accomplish the facilitation of such collaborative patient provider relationships, thereby contributing to an un doing of medical authori ty on a case by case basis. However, through deeper analysis, the present study zooms in on the processes that occur in the effort to bring patients together in such a relationship, uncovering hidden elements that contribute to a larger understanding of th e needs of patients with complex care needs.
! 24 CHAPTER III METHODS This study has emerged out of an exploratory program assessment project that broadly described one high utilizer program using qualitative data collection and analysis and a grounded theory approach. 1 The program is relatively new, and its development has followed an experimental and iterative process, making description of the program's components not simple or obvious. The emphasis of the assessment was to capture the major components of t he program as it was experienced by a variety of types of individuals involved in the program, including not only patients but also staff and others, as well. Data were collected primarily through open ended, semi structured interviews with participants, w hich was qualitatively analyzed using a coding process to then present common themes and a theoretical model of the relationships of these components. The grounded theory approach responded to the broadness of that study's aim to describe the program and how it is experienced. Grounded theory calls for research that itself generates theory, in contrast to research that tests predetermined theory. This inductive approach is necessary to capture what is as yet unknown or not understood. In contrast, a deduct ive approach presumes an array of outcomes and thus fails to discover answers that fall outside of those presumptions. Grounded theory requires a "theory method linkage" (Patton 2002:125), calling for specific methods such as use of both a priori and emerg ent codes in analysis (Bull and Shlay 2005:74). Grounded theory is especially well suited to qualitative research (Patton 2002:125), particularly ethnography, as will be described further below. Grounded theory was used in this case to approach a !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 1 The name of the program will not be used here in order to maintain participant confidentiality.
! 25 qualitati ve study of a relatively un studied type of program intervention. In line with grounded theory, the assessment proposed a theoretical model that can be tested deductively in the future. The present study aims to further elucidate one aspect of these findi ngs, applying existing theory to help understand their meaning in the larger context of medical anthropology research. For this study, I have conducted further analysis of the data in order to take a closer look at the process of connecting patients and pr oviders which appears to be much more complex and dynamic than readily understood by program staff. In my initial analysis, I discovered discrepancies in how participants described the process of connecting patients and providers. By further analyzing thes e discrepancies here, I elucidate the multiple aspects of the connection process and then use structural vulnerability theory to demonstrate the importance of its hidden elements. In order to contextualize my findings about the connection process, I also d isplay common themes from the data about problems experienced by both patients and providers. Sampling and Recruitment The grounded theory approach of the initial program assessment study called for research methods that collect and analyze data that is br oad in nature. In order to gain as broad an understanding of the program as possible, and to represent the variation of roles and experiences within the population of people involved in the program, I recruited participants from a wide range of groups, inc luding patients, patient family members, outreach workers, program administrators, other program staff, providers, and other clinic staff. More patients and outreach workers were recruited than other groups because of their more intense involvement in the program. Due to the study's short time frame and
! 26 qualitative approach (and the associated need for a small sample), other variations within the sample (such as race and gender) were only considered secondarily to representing the variation of different gro ups listed above. I recruited outreach workers, program administrators, and other program staff directly through attending meetings and email recruitment, and other participants were recruited using the snowball method, following initial contact with thes e program professionals. Thus, the sampling method can generally be defined as a convenience sample, making use of the participants most available through contact with the program. As LeCompte and Schensul explain, convenience samples are appropriate for e xploratory studies (1999:233). This collaborative sampling process was necessary due to the time constraints of the project and, it should be noted, necessarily biases the sampling process. "Sampling bias is not a major concern in preliminary or explorator y studies" (LeCompte and Schensul 1999:262). However, it should be noted that results of the study should only be used to generalize about the population while considering the effects of this bias. Bias will be further discussed in the limitations section. Overall, the primary focus in sampling for this project was to capture perspectives of multiple types of people that make up the program, not to represent variation within each category of participant. This aligns with the project's exploratory nature. Ac cording to LeCompte and Schensul, "good sampling frames require that every member, or at least all categories of members in a population, be represented" (1999:233, italics added). Generalization of results can thus be reasonably made about the entire popu lation of individuals involved in the program, but not of each group since these groups were not be representatively sampled.
! 27 Most participants were offered thank you gifts for their participation that varied depending on the significance of gifts for each group of participants (e.g. patients were offered $25 grocery gift cards for each interview, while professionals were offered $10 coffee cards and program administrators were not offered a gift). (Only one participant, a professional, chose not to accept a gift, but instead suggested that the funds be donated to a charitable cause.) Before participation in the study, all participants were informed about the parameters of the study and written consent was voluntarily given. Data collected from minors has be en excluded from analysis for the present study. The sample (n = 17) includes: 5 patients; 2 patient family members; 4 outreach workers; 1 program administrator; 2 other program staff; 2 primary care providers ("providers"); and 1 other clinic staff. Wit hin this sample, 13 are women (76.5%) and 4 are men (23.5%). More than half of participants (n = 11; 64.7%) are Caucasian, 4 are African American (23.5%), 1 person is from Africa (5.9%), and 1 is from South Asia (5.9%). Data Collection The initial assessme nt study's aim of broadly describing the program and how it is experienced by participants, in combination with the choice of a grounded theory approach, called for ethnographic methods. Ethnography is a group of methods which has been designed under the a ssumption "that we must first discover what people actually do and the reasons they give for doing it before we can assign to their actions interpretations drawn from our personal experience or from our professional or academic disciplines" (LeCompte and S chensul 1999:1 2). This underscores how a grounded theory approach is
! 28 woven into ethnography a method "designed for discovery" (1999:2). Ethnography's primary data collection modes include participant observation and qualitative interviews. Due to the time constraints of the study's data collection period, data collection focused heavily on interviews, which were more easily achieved than participant observation because of the lack of time in which to build rapport and comfort that would allow observation. Data was collected in person over a combined period of three weeks in 2013 (one 2 week session and one 1 week session). I attended two program staff meetings and informally observed outreach worker patient interactions in home settings, collecting observa tional data to establish a contextual understanding for interviews. Open ended, semi structured interviews were conducted with all participants, either in their homes, in restaurants, or in office settings. I was able to conduct follow up interviews with 3 of the 5 patient participants as a means of clarifying material after having established more rapport with this particularly vulnerable patient population. The semi structured style of qualitative interview method was chosen for its appropriate applicatio n to exploratory research (taking in broad open ended answers) while maintaining focus (by using pre determined interview guides) (Schensul et al. 1999:149). Interview guide questions were prepared specifically for each type of participant. However, all qu estions centered around: 1) participant and/or patient life and/or professional experiences before and after engagement with the program; 2) general description of the program, including probes for both positive and negative perceptions and/or experiences; and 3) concerns about one's life or profession outside of the scope of the program (establishing context).
! 29 Data Analysis and Interpretation Interviews were audio recorded and transcribed by me. I then coded transcripts using Dedoose qualitative analysis software (Dedoose Version 4.5 2013) and a codebook that I created including a priori and emergent codes. A priori codes were derived from literature review about other hot spotting programs, a program outreach worker job announcement position description, and initial interviews with program administrators. I also identified many emergent codes during the coding process, looping back to apply emergent codes to previous material where needed. The codebook included four major categories: 1) Who are the patie nts and what is their general life experience?; 2) What do outreach workers do, in relation to patients and otherwise?; 3) What effect does the program have on patients and other participants?; and 4) What role does the program play within the healthcare s ystem? Codes that were discussed commonly by more than one participant were summarized as important themes in the program assessment report, and a theoretical model of the relationships of program component themes was presented. In the present study, I f urther analyze themes that showed discrepancies in participant responses to describe in more detail the hidden processes that contribute to connecting patients. I draw on themes that describe patients' general life experiences to situate the complex care n eeds of patients within sociopolitical structures. Limitations Limitations of this study stem from the original assessment study's short data collection time frame. While 17 participants is an adequate sample size for a qualitative
! 30 study, more participants could have been included for this study with additional time and personnel. Human Subjects Protection Both the present study and the previous program assessment p roject have been reviewed by the Colorado Multiple Institutional Review Board (COMIRB).
! 31 CHAPTER IV FINDINGS Structural Wounds and Other Problems Participants provided many descriptions of the problems that patients and providers have experienced in the past (before the program intervention) or that they continue to experience. Many of these descriptions align with what has been shown in the existing literature on patients with complex care needs, medical authority, and provider constraints. Below, I summ arize themes about patient and provider problems described by program participants, highlighting how participant responses made clear the structural roots of these issues. Thus, these problems can be described as structural "wounds." Complex Care Needs I t is well known by program staff that patients who are selected for recruitment into the program have multiple, chronic physical health, behavioral health, and social problems/needs, and thus all patients that participated in this study and that were discu ssed in interviews with other study participants clearly fall into the category of patients with complex care needs. To provide an understanding of what these needs look like on the ground and especially how they overlap and interact, I present below a sum mary of findings about patients' health and social needs. I also highlight how patients' needs are situated within structural contexts, providing participant data that reveals how these needs may ultimately be structurally exacerbated or caused. Health Pro blems. Patients' mental health problems were very commonly discussed, even more than patients' chronic physical health problems, with particular emphasis on discussing depression and anxiety. Additional mental health problems
! 32 discussed included: 1) low se lf efficacy; 2) social anxiety; 3) seizures and fainting; 4) anger/lack of coping skills; 5) bipolar disorder; 6) schizophrenia; and 7) dementia. Chemical dependency, also a mental health/behavioral health need, was discussed less often, but still constit utes an important theme. Participants discussed patients' dependencies with: 1) cigarettes; 2) alcohol; 3) marijuana; 4) heroin; and 5) other substances that were mentioned only once (cocaine, street drugs, and general reference to IV drug use). Only one m ention was made about a patient addicted to pain medications, however, this does not represent the importance of this issue. More often when pain medications were mentioned in this study, participants spoke about problematic pain medication prescription pr actices in the healthcare system (rather than about specific patients experiencing this addiction), and therefore, this topic will be discussed further below. Many different chronic physical health problems were discussed, including: 1) more intense, non r eversible diseases (such as renal failure and congestive heart failure); 2) conditions often considered to be reversible through "lifestyle behavior change" (such as diabetes mellitus and hypertension); and 3) other less intense chronic conditions (such as insomnia, asthma, chronic pain, and dental care needs). Acute illness was discussed much less often, including heart attack, aneurism, and stroke. Several participants also discussed patient mortality; however, this was less often in reference to the act ual death of a patient but instead was discussed in relation to hospice and end of life decisions. Some participants also discussed mortality as a reality for patients in their near future, and a chronic cause of worry.
! 33 Interaction of Comorbidities. Two t hemes emerged that consider linkages between patients' multiple types of conditions, and the potential for mutually reinforcing problems and a vicious cycle: 1) mental health problems exacerbating physical problems; and 2) physical health problems exacerba ting mental health problems. Some participants talked about how mental health problems, particularly anxiety, contribute to or exacerbate physical health problems (such as diabetes, substance abuse, or symptoms related to sympathetic nervous system dysfunc tion). One patient described her thoughts about a connection between her anxiety and her development of diabetes: It was a lot of stress, and the pain I didn't have no help. I was stressin' out. I didn't have nobody to help me, and I was just eating and e ating, sweets and sweets When I found out [about the diabetes], I said maybe that's the cause of that [the stress]cause I used to get six, seven of em [candy bars], eatin' chocolate, and I said maybe that caused my diabetes. I don't know, but there's o nly one person in my family that's a diabetic. Participants also described the reverse how physical health problems can exacerbate mental health problems. They talked about how physical health problems (including mortality, chronic pain, dialysis treatme nt, and difficulty with weight loss management) contribute to anxiety and/or depression. A clinic social worker described one patient who is struggling with weight management: Nearly all of her health issues are related to obesity. The patient acknowledges that she feels completely overwhelmed by the recommendation that she lose 200 pounds. So [her outreach worker] has asked me to work with her more intensively about that anxiety and that depression. For a patient who is confronting a very sign ificant physical health problem his mortality in addition to living with poverty, social isolation, and the difficulty of
! 34 dialysis treatments, his depression was exacerbated to the point of having suicidal thoughts: When you're sitting in a car all day l ong and you can't afford to go anywhere cause you're on a fixed income. And you have to sleep in your car, and then do dialysis, and go back to your car and do nothing, all's you do is sit and think. And all's you do is think about the worst case scenario And then it starts to eat at you. I remember crying many nights in my car, thinking of ways to harm myself. Because I just didn't know what to do And it was just like, going into this dialysis center, I was so scared. Because all there were in there wer e old people. You know, I had a talk with a person at a bus stop, a man, prior to going in [to the dialysis center]. We got into this discussion about health and stuff. And I told him what I was doing. I said, Yeah, I'm doin' dialysis. You know, you're lucky to be alive. We're lucky.' I was trying to bepositive about it. And he said, You're gonna die,' straight to me. He said, You're going to die, cause it killed me wife.' And he started cryin'. And that's basically what set it all off for me is thi s old man saying, You're going to die.' With links between mental health problems and physical health problems, and vice versa, there lies the potential for mutually reinforcing conditions and an increasing complexity of care needs. Both providers and o ne family member talked about the need with some patients to address mental health problems first, before expecting to successfully address physical health problems. A provider and a family member (respectively) describe their perspectives: Are we gonna get anywhere with a patient's diabetes before we address their anxiety? Or are we just gonna feel like we're spinning our wheels? I think they should have gotten him into counseling immediately. You know, he was homeless, he felt horrible. just help ea rliermentally, also not just physically. Backgrounds and Social/Structural Situations. Five common themes emerged about patients' backgrounds: 1) an unhealthy relationship with a parent; 2) childhood trauma experience; 3) having family members with hist ories of intense health problems
! 35 (including substance addiction); 4) a history of moving homes often (in childhood or as an adult); and 5) the social/structural consequences of being a minority (by nationality/culture, sexuality, race, and economic status) Many themes arose describing patients' current social/structural situations. These include: current or recent trauma experience; current poverty; current or recent homelessness; issues with employment; lack of social support; sources of social support; having a lot to think/worry about; problems with current housing; that patients' family members are negatively affected by patients' health problems and/or use of healthcare; patients and their family members are separated by geography; social isolation; lack of stimulating activity/boredom; the need to care for family members; a desire for solitude and/or more peace and quiet; and values of interdependence. Poverty and trauma were especially commonly discussed themes. A large portion of mentions about cu rrent or recent traumas described sudden or early deaths of loved ones (parent; partner; other family members). Other current or recent traumas include divorce, domestic violence/abusive relationships, loved one's intense illness, and other traumatic exper iences mentioned only once (rupture of relationships in response to coming out; war and life as a refugee; witnessing abuse of one's children; extreme burns in house fire). The overall image of patients' backgrounds and current social/structural situation s is one of social and economic instability and insufficiencies. In the face of this lack of consistent financial and human resources, patients' realities are dominated by continuous struggle, both emotionally and for bodily survival. In other words, patie nts appear to experience a high amount of structural vulnerability.
! 36 Syndemics. Two additional themes emerged that suggest how patients' unstable social/structural situations affect and interact with their complex health problems. Participants described ho w social/structural factors exacerbate physical and mental health problems, and that sometimes these social/structural factors appear to operate as root factors that contribute to the development of health problems, effectively constituting root causes of illness. First, p articipants discussed how social/structural factors in patients' lives exacerbate existing physical health problems. For example, homelessness was described as a major roadblock in patients' wishes to manage their own care. One outreach w orker explains: People always say to me, I can't do this until I have housing,' or I can't take my meds until .' A lot of people are afraid to take meds if they're on the streets, for various reasons. They might be groggy [it] dampens their ability to r espond or afraid to be robbed for pills. It's not easy to do medication management when you're homeless anyway, but then there's all these other things too that people worry about. Participants also explained that homelessness made maintaining a "healthy diet" nearly impossible, so that conditions like congestive heart failure or diabetes were exacerbated during times of homelessness and subsequently patients' use of ER/hospital increased. Other factors that participants identified as exacerbating existin g health problems include abusive relationships, over crowded living spaces, and burdens of caring for multiple family members while ill. Similarly, some participants identified social/structural factors that exacerbate mental health problems, as well primarily depression and anxiety. These include poverty (including problems with housing), unhealthy relationships, and exclusion from service s (health services; life insurance). Poverty was an especially commonly discussed
! 37 factor. For example, one patient explained that when she thinks about how she won't be able to pay rent with the income she receives, she feels sad and starts crying, which t hen often leads to fainting and a trip to the ER. Another patient said that his exclusion from eligibility for life insurance (on the basis of his complex health problems) is a major contributor to his depression, that he dwells on it every day, since this means when he dies he will likely leave his family with a debt they cannot afford. He explains: So that's my depression part of my life, that's what makes me cry, that I'm that bad off. In addition to the exacerbating effects of health and social/struc tural factors described above, some participants also identified what they saw as underlying social/structural root factors of mental and other health conditions particularly childhood or other previous trauma, and poverty. Childhood trauma was described a s a very common root factor contributing to patients' complex care needs, including mental health, physical health, substance use problems, and their complex interaction. In some cases, traumas were described as manifesting in substance abuse problems that then contributed to development or exacerbation of other health conditions. One provider describes his perspective: Chronic medical problems really stem from, in a large part, situational influences. We serve a patient population who have just such dysfunctional upbringings. They're not taught coping skills; they're not really taught self care; they're not taught self love The patient who was sold into the child sex trade at twelve; the patient who is now addicted to heroin because the fi rst time he used it was with his dad; the amount of child abuse and child sexual abuse. And it doesn't even have to be that extreme. people who were yelled at as a kid, their parents were incapable of controlling their own tempers, incapable of providin g a secure environment... And so their whole physiology is screwed up because they didn't have safety as a child.
! 38 Similarly, poverty was portrayed as a complex root problem, contributing to mental health problems, substance use, and subsequent health prob lems. As one outreach worker explained: I have one COPD [chronic obstructive pulmonary disease] patient, for example, who lives in one of the newer developments. She lives in a second story unit. She has really bad COPD she can't breathe going up and dow n the stairs. We have to try to get some reasonable accommodations for her. But ok, you're on low income housing how do you get the security deposit and a moving truck and all the things you need to move, when you're elderly and sick. And you just stay i n your house, and you get depressed, right? You sit there all day, you watch Court TV and Jerry Springer, and you know, send a grandkid or a neighbor kid to the corner store to get you some candy or a soda and you sit there. Or you might smoke some cigaret tes. My life sucks, dude. I'm gonna sit out here on the back porch and just smoke a cigarette.' One provider underscored the starkness of poverty's effect, saying: I just feel like poverty gives way to so many problems. Just the stress of having low s ocio economic status it's like a death sentence from birth. These interactions between social/structural factors and health problems, in combination with the interactions between mental and physical health problems described earlier, illustrate a tangled mess of factors contributing to entrenched health situations that appear desperate. These are clear examples of individuals experiencing a "syndemic" that includes not only rampant mental health problems (like depression, anxiety, and substance use) and p hysical health problems (like congestive heart failure and diabetes) but also the structural violence of factors tied to poverty (such as homelessness, over crowded living spaces, and abusive relationships). Thus, according to participants, these multiple "epidemics," when combined in a "syndemic," appear to interact synergistically and lead to "excess burden of disease" (Singer and Clair 2003:425). Furthermore,
! 39 participants' descriptions of social/structural factors, particularly trauma experience and pove rty, as not simply exacerbating problems, but in fact as underlying root causes of illness illustrate how structural violence can be seen as ultimately responsible for setting such syndemics in motion, and in the end, being the main perpetrator of the resu lting bodily wounds. Difficult Experiences in the Healthcare System When these individuals these wounded bodies enter the healthcare system to receive care, much of their experience is ironically characterized by an additional layer of struggle. As is de monstrated below, they experience difficult and unsatisfying delivery of care from providers, as well as several other factors that make getting care a trying, or even impossible, task. Participant data also describe the resultant mistrust, fear, and stres s that patients feel when interfacing with the healthcare system. Thus, patients are confronted with structural violence within the healthcare system itself that further contributes to their structural vulnerability. At the same time, participants also id entified the difficulties experienced by providers, both in their interactions with these patients and with their extremely limited time and, therefore, ability to genuinely connect with patients. In this way, the structural constraints placed on providers negatively affect provider experience and, very importantly, their care of patients with complex care needs. In the end, participants illustrated a dismal patient provider relationship that is saturated with frustration and anxiety on both sides. The fol lowing section lays out how this troubled relationship is ultimately generated by multiple structurally rooted problems or "wounds" experienced by patients as well as providers.
! 40 Patient Experiences. Difficulties with delivery of care. Three major themes describe the difficulties patients experience with the way that providers directly deliver care. Very prominently, participants talked about the lack of time providers spend with patients, and this was often linked to descriptions of how providers also do not listen to patients because of such a strain on their time. Participants also talked about how the lack of time and listening means that providers do not get to know patients fully or get a grasp of patients' realities. When patients do not feel provid ers are listening to them, they sometimes feel that the provider does not care about them or the patients' experiences, perspectives, or opinions. Participants also described how patients sometimes perceive that providers are simply not helping them, eith er unintentionally or intentionally. Patients perceive that providers either do not know how to help them (solve a medical problem) and therefore simply prescribe over the counter medications that do not fix the problem, or that providers are refusing to h elp them (by not performing tests or not prescribing medications). Interestingly, one patient illustrated how the help patients are looking for may not always need to be in the form of treatment, but even simply in the form of an explanation; that is, an h onest explanation about why the provider can't help them would be better than getting no treatment and no explanation at all: I asked, Why?' No answer. And I still haven't gotten an answer. That pisses me off, because I want answers. I don't want, 'I don't know,' [or] 'I can't give you any information.' You're the doctor, come on, you're the specialist. Talk to your people No, what they did instead, they said, Here, take these pain medications, take this heart medication, and we'll see you every othe r month.' I feel let down; I feel completely let down by the medical system.
! 41 In the following, one patient describes how a lack of time and lack of help make him feel like providers do not care: Their bedside manners needs to change. For instance, instead of treating the patient like that's all they are is a piece of meat and it's just a paycheck to them This is another person, you know. This is a person with their life in your hands. Just the idea of communication, is a big factor. I went to a [provider] they never got back to me. I went back, and they said, someone forgot along the line. I said, that's just the problem with healthcare is people are not paying attention to other people's problems. What it seems like to me lately is, they just want to get em in, do nothing, get their paycheck, and move on. And that's what a lot of doctors are doing now. We don't know what you got, it must be the flu or some type of infection. Take these meds,' even though they don't kn ow what it is And if it's not that, come back come back, come back.' That just makes them more money. Several professional participants talked about these kinds of disconnects (lack of time/listening, and not helping) in terms of the patient provider po wer differential. These participants talked about how the power position of providers is not only counter productive in efforts to successfully provide care but can also be extremely damaging to patients' senses of dignity, especially for patients of color who often experience additional prejudice. One outreach worker explains: [There is] intense hierarchy, where there's experts and patients. And people are totally suffering because of it. Doctors can have the best intentions and still talk down to peop le. Additional difficulties. Several other themes describe difficulties patients experience in the healthcare system as an added layer to the often difficult face to face encounter with providers. Patients may have had previous negative experiences with treatments, either because of the inherently difficult nature of the treatment (such as dialysis) or because of negative results or side effects (during procedures). Participants also addressed the fact that patients may have been excluded from coverage of certain
! 42 services, or even from health insurance as a whole. A related theme centered on the difficulties that patients experience with pain medications. This was described clearly as a system level problem in which pain medications were historically over prescribed, followed by a sudden reversal of this practice without an alternative plan for pain management, then resulting in the problem of many patients visiting the ER to obtain pain medication. This has led to widespread frustration on the part of prov iders, who often label such patients as med seekers' and thus blatantly, and often angrily, deny care to patients they view as undeserving addicts. In two additional themes, participants described incongruence between patients' abilities and the modes in which service is provided. These were described as patients' lack of medical literacy and barriers with language. In the case of a lack of medical literacy, participants sometimes described how this was related to patients' low education levels. Some part icipants referred to this lack of medical literacy as a problem of the individual patient (implied as something to rectify), while others described it as something that points to flaws in the healthcare system, which fails to provide information at lower e ducation levels. Difficult emotional experiences. Considering the multitude of difficulties that patients experience when interfacing with the healthcare system, it is not surprising that another group of themes emerged about the difficult emotions patie nts experience in relation to aspects of the system. Patients often have mistrust of the healthcare system at large or of specific institutions where they have had bad experiences, in which case, patients often explained that they now choose not to use ser vices at those institutions. Patients are also often fearful when using the healthcare system, often fearing treatments,
! 43 procedures, or just the idea of meeting with a provider and fearing expressing to them their opinions. Stress is also a common emotiona l experience for patients when interfacing with the healthcare system, particularly in their relationships with providers. Provider Experiences. Working with "difficult patients." Participants described several mental health problems (usually stemming fr om social/structural roots) that additionally contribute to patients' difficult experiences but that simultaneously lead to difficult experiences for providers. These mental/emotional problems were often described in terms of how frustrating the patient wa s being, thus being perceived as a "difficult" patient, aligning with existing research on how the psycho social needs of patients can overwhelm providers in this way. Participants talked about: 1) social anxiety making attending dialysis appointments diff icult; 2) stress/anxiety (that is exacerbated by family issues) contributing to the patient forgetting to take their medications; and 3) lack of coping skills (as a result of dysfunctional upbringing) leading to an inability to communicate effectively with their provider (and, instead, expressing anger). This last difficulty is described by one provider below. He first talked about how patients have not been taught coping skills, self care, or self love in their upbringings, then continues: And so they ge t into a situation like a medical office where somebody's paying attention to them, and somebody potentially has the tools to help them. And they can't really differentiate, you know, I have high blood pressure, and that's a medical issue,' from, I feel really horrible all the time because of the way that I was raised.' You know, if you're fixing my high blood pressure, why can't you fix the fact that I feel horrible all the time? With a patient whose coping mechanisms are so poorly developed A patient runs in and says is just angry You're not doing anything for me, and I'm dying!' Compromised resources. Some participants described the other difficulties providers experience in their work. Discussion largely focused on the limited time
! 44 providers are a fforded and how problematic this is for both providers and patients. Two outreach workers and a provider explain, respectively: [Providers] are over worked. They aren't doing the kind of care that they want to be doing. They know it, and feel it. They don 't get enough time with people, because they have to produce billable hours, and billable procedures, stuff that fits inside the insurance framework. This system is stressed out. Nobody has time and you need to have time in order to listen. None of us has time tofind out what's going on in their lives [to find out] what she's like outside of the 20 minutes I see her once every couple of months[to see patients] as more than kind of just this medical disaster sitting in front of me. Strained Patient Provider Relationships. Overall, both patients and providers experience multiple constraints and difficulties within the healthcare system, particularly when interacting with each other. Themes arose about the stress experienced by both patients a nd providers in the patient provider relationship. Almost all descriptions of patients' stressful experiences of providers included the patient disagreeing with the provider over the providers' treatment plans (or lack thereof), and in some cases, feelings of not wanting to express this disagreement. In many cases, patients felt that providers were not listening to them (or even not believing them) and were failing to attend to their health needs. Patients' emotional experiences of these challenges ranged w idely, including: frustration, feeling hurt, exasperation, anger, sadness, anxiety, and, in some cases, a constellation of many of these emotions. Descriptions of providers experiencing difficulty with patients included providers: 1) feeling exasperated w hen they see the patient as not complying or understanding how to comply with their instructions; 2) desiring open, honest communication from the
! 45 patient; and/or 3) desiring some positive reaction (versus the hostility patients sometimes show them). Ultim ately, what appeared in this group of excerpts was a clear pattern of patient provider relationships with severe disconnects between each side's lived experiences and perspectives, and a void of genuine communication with which to patch those disconnects. The following quotes aid in illustrating the complexity of these relationships and the emotional impact experienced on both sides. One provider describes his experiences: I was feeling really exasperated, because I felt like this patient wasn't doing anyt hing from my mindset, this patient wasn't doing anything to make himself better I like to think of myself as a fairly empathetic provider, but for some reason, in this case, I was just so exasperated. I'm sure he could sense my frustration, and felt like I was blaming him for what was going on with his health. In every other relationship in my life, the relationship is a two way relationship. You know, I give in the relationship, but I also receive. By the nature of what we [providers] do, we often are just on the giving end of the relationship. And that's not to say that all of our patients just take all the time. Otherwise, I wouldn't be doing this. But there are relationships that are more challenging because the patient is often in crisis and often r equires a lot of energy. Or, I often feel like I'm giving a lot of energy and I'm not getting much out of the relationship in return. For me, more than half the reason I do this [work] is the personal connection. So if the connection is really challengin g, then every visit is really challenging. In the following excerpt, a patient describes her devastating experiences being turned away from treatment by multiple providers, and ultimately experiencing a hostile relationship with a provider and institutio n. Her story exemplifies not only a stressful patient provider relationship but also many of the themes described above about patients' difficulties when using the healthcare system, including providers not listening, providers refusing to help, the provid er patient power differential, and, in particular, systemic
! 46 issues with pain medications. Her story also echoes the common discrimination of African American patients described by one outreach worker. This patient has suffered from chronic knee pain for ma ny years. After several years of continuously being turned away because of being perceived as a "med seeker," she has recently found a provider who agreed to perform imaging tests of her joints and diagnosed her need for knee surgery. She explains: I kep t telling the other clinic I had real bad knees and they wouldn't listen to me. And it was like fifteen years, I've been tryin' to tell em, Something wrong with me,' you know, and they wouldn't listen to me When I broke this part down here [knee], he [provider] was trying to stop my medicine. I was switching over to [another clinic] and she stopped my medication cause she thought I wasn't in pain and all that. And I was in a lot of pain. My sister was going in the clinic with me. Thentwo other clini cs, sayin' the same thing. I said, No, I'm really hurting,' and they wouldn't believe me either. They knew I was hurting a little bit, but they was saying, like like I'm addicted, like I'm some kind of drug addict on the street. My past is a past twe nty years ago. I was on drugs twenty years ago. But all my life that I'm realizing now, all those drugs that I've been through, that affected me now. And I realize it, and that's really hurt me so bad, and I should've thought about that stuff years ago, an d it really, really hurt me bad. And I said, Oh my God, really? People think I'm really on drugs?' I mean, I've been off for twenty years, and people still like, Are you still on that?' No [with force]. I let it go. When I found out about my heart con dition, I let it go, because I found out it caused my heart, it caused my diabetes, all that stuff. Drugs, the chemicals that affected your body. I seen so many people that dyin' behind that. And I realized, maybe we all dealin' with the same people, deali n' with the same drugs, that affecting us. And it's really hard. And I really changed my life all around. My first grandchild was born, that's when I really stopped. Cause I didn't want him to grow up around a grandmother that still smoke crack, you kno w what I'm sayin'? I didn't want to affect that, and I'm too old for that. I am a grandmother. I am a grandmother of fourteen grandchildren. I want to be the best grandmother I can be. I went to the hospital, my knees was swelling up. I kept saying I c ouldn't move my legs, and I couldn't feel my toe. I started going to the doctor. He said, Ain't nothin' wrong with you, you just sprung it.' I go
! 47 back to him, I say, My legs is swelling, they won't stop swelling up.' He say the same thing again. The thir d time, I say, 'I'm not leavin' until I get an x ray on my knee.' They took the x rays. He said, Oh. Oh, I apologize your knee is cracked.' You guys weren't looking into that? When someone says My leg is swelling up?' I could've sued you for not eve n lookin' into that. He kept saying, There ain't nothin' wrong with you, you don't need no pain pill, there ain't nothin' wrong with you.' Then, he see it was cracked. I could'a walked on it could'a broken it again. You know, there's a evil way that t hey talk to you. I had to argue with him. I shouldn't have to argue with you, you should do your job, and look into that. How many times I went through that. The other time I was hurtin' so badI couldn't even get on the table, that's how bad I was. The security guard I won't forget his face throw me out of the hospital. And I was hurtin' that bad. They called the security guard and told me to get out. Cause he [provider] thought I was fakin'. And I was hurtin' so bad. The dude was gettin' smart with me, he had attitude with me. And then, the other lady, she was talkin' like, 'Well, I'm not gonna deal You know, [I'm thinking] like, What is wrong with y'all today?' You know, if you got a bad attitude at home, don't bring it to your job. You takin' it out on the patients. ...I had no cab, couldn't take me to another hospital. I sat out there in a wheelchair, out in the parking lot, waiting for a cab to come and get me because they wouldn't help me I've been through some hell with different doctors and different hospitals. What [that hospital] did to me, I'm still scared to go there. The two excerpts above, from both a provider and a patient, both illustrate how the existence of structural wounds fuel the fire for frustrating attempts at working together. In the provider's story, the patient's differing approach to health care ("lack o f medical literacy") as well as the patient's emotional crises led to the provider feeling overwhelmed and ultimately frustrated with the patient. Yet, we can see from the themes described earlier that these "difficulties" are in fact wounds of larger stru ctural forces. The patient's lack of medical literacy likely stems from a background with limited education and lack of endowment with social capital; the patients' emotional crises are likely rooted in a life filled with traumatic experience (both interpe rsonal and poverty
! 48 based). Thus, this patient becomes "difficult" in the eyes of the provider because of factors engendered largely by poverty. By the same token, the patient story above demonstrates how structural factors lead providers, like the hospita l and staff she describes, to become not just frustrating but even hostile, in the eyes of patients like herself. The hospital staff's dismissal and disrespect of the patient ultimately stem from misguided policy that reversed a pattern of over prescribing pain medications and quickly moved to blaming patients, no doubt further fueled by the limited time healthcare professionals have to work with. These are just two examples of how the factors that make patient and provider experiences difficult, particula rly when patients and providers interface, can often be traced to structural roots. In the following section, we will see how the intervention program works to create healthier relationships between patients and providers largely by addressing these struct urally rooted factors, in other words, by "treating" these structurally inflicted "wounds." The Program Intervention The program's primary aim is to decrease patients' frequent use of expensive forms of healthcare services (particularly emergency departmen t visits and inpatient hospitalizations) when patients' health needs could be more efficiently addressed in the primary care setting, or through other ground level health and social services. Thus, the program's primary goal is to connect high utilizer pat ients with healthcare providers and other social service providers. This process is described below in two stages. First, a simpler view of the connection process is described; according to some participant remarks, the connection process is simply that co nnecting patients and providers.
! 49 Second, a closer analysis of participant responses reveals a more complicated perspective in which a preliminary stage of healing wounds and addressing problems precedes the main connection process. Connecting Patients and Providers in Collaborative Patient Centered Care Analysis of interviews revealed that, indeed, program outreach workers do appear to accomplish establishing collaborative patient provider connections, so that by the time the program "graduates" patients, they are making more use of their primary care pro viders and social services and less use of unnecessary ED visits and hospitalizations. The connections that are made between patients and these ground level providers of care and services do also appear to be more characteristic of collaborative patient ce ntered care. In order to begin the process of connecting patients to providers, outreach workers put a lot of energy into forming trusting relationships with patients who are otherwise wary of service providers, including themselves. Once this trust has b een established, patients become open to working with outreach workers collaboratively. Outreach workers ask patients what their most pressing needs and concerns are. Then they provide patients with information that helps them address those needs, or they help the patient generate their own ideas for solutions. Solutions from outreach workers and patients center around either 1) helping patients learn or find their own ways to engage with providers collaboratively and in a way that meets their needs; or 2) helping patients learn or find their own ways to manage certain aspects of their own health or social situation (in collaboration with their providers).
! 50 The outreach worker and patient work together to allow the patient to practice problem solving on thei r own. This process appears to progress through a spectrum of patient independence (using "baby steps"), from the outreach worker working closely with the patient to devise plans to the patient finding their own ways to problem solve around an issue they i dentified with their outreach worker, and ultimately, to the patient's "graduation" from the program and full independence in problem solving. Through providing information and advice about patients' self identified concerns, and then working with patients to practice using that information, as well as encouraging patients to generate their own ideas for solutions, patients are essentially trained in a highly collaborative way to be "engaged" or "activated" patients who are then able to participate in produ ctive, collaborative relationships with their providers. On the other side of this effort to connect patients with providers, of course, are the providers. While much less highlighted by participants, it became clear that outreach workers also do importan t work to bring providers into a productive, collaborative relationship with patients, in other words to train them to be "engaged" providers. This process was also described as highly collaborative, so that the "training" was never described as such, but instead as an information exchange in which providers and outreach workers learn together how to work effectively with patients. And just as in the outreach worker's efforts with patients, forming a trusting relationship was a key beginning point for outre ach workers' work with providers. Outreach workers' efforts to "train," or educate, providers was described in participant discussion of how outreach workers serve as "translators." Participants described how outreach workers act as a "translator" between patients and providers by
! 51 making patient perspectives clear to providers, and provider perspectives clear to patients (with particular emphasis on the former, however). To "translate" patients' realities to providers, outreach workers report to providers c ertain information about patients that outreach workers glean from their ability to do home visits and spend more time getting to know patients. This information includes: 1) patients' social/structural realities; 2) how the patient feels in relation to th e provider; or 3) positive aspects of the patient's life that the provider does not otherwise see in the clinic setting. In addition to translating, one outreach worker described another aspect of "training" providers modeling. She explained that provider s learn from outreach workers how to successfully interact with patients by seeing and hearing about what outreach workers do when interacting with patients. Thus, outreach workers provide needed information about patients (through translation) for provide rs and also appear to model for providers how to interact with patients productively through collaboration. Out of these processes, it appears that providers learn how to more successfully collaborate with patients, as "engaged" providers the other half of the collaborative patient provider relationship. Connecting patients and providers in such collaborative relationships is clearly an important part of the program, and stands as an important accomplishment in efforts to not only reduce costs but also to rectify long standing and harmful modes of medical authority. However, some participants made clear in their descriptions that connecting patients and providers through this kind of "training" is the only thing that the program does. These participants exp lained that outreach workers do not provide any type of care or case management services themselves, but simply connect patients to existing services,
! 52 thus supporting a sustainable model in which outreach workers come in temporarily to make connections and leave without anyone missing them. A program staff person and three outreach workers, respectively explain: In this program, we take a look from above. Who are the people already involved in this person's life? If I step in, what do I bring? Do I make it more confusing for a patient? Or can I step in and just make these people talk, just connect them, and build that system for the patient? and then my work will be done. Because really, we're just helping people navigate the resources that are availab le to them. Most of them don't know how to access the healthcare system. Most of them don't know about Aging and Disability Services or that they're eligible for medical equipment. Or, figuring out their medications. I shared information with someone abo ut getting help with in home care. They didn't know that that existed, that they were eligible for it, that there was a place to care. They were just trying to do it all themselves with their family. And it's hard on them, it creates more stress. Or tran sportation resources. People are like, I'm not coming to the clinic because I don't have a ride.' Well, let's work on getting some transportation. That's a huge one. Advocacy within Aging and Disabilities, Mental Health, and Developmental Disabilities. Essentially, we're trying to help somebody stabilize to the point where we can step out. So part of what we do is we try to figure out, if somebody needs this type of support, who is going to be the longer term worker that can step in and start supporting this person? Because we're not long term case managers. In fact, we try to not identify ourselves as case managers at all. We're not mental health workers; we're not medical providers. We're community outreach workers we're connectors. Hidden Healing While the description of the program as one that only connects patients to existing services was a strong theme amongst participant responses, several other themes, when taken together, point to a more complex perspective of what outreach workers actually accomplish. The themes discussed below illustrate how outreach workers not only
! 53 connect patients and providers but also end up providing forms of care in addition to the care provided by existing services. During the process of forming trusting relationshi ps with patients and providers, outreach workers find themselves, knowingly or unknowingly, caring for the various structurally inflicted wounds patients have suffered, as well as attending to the existing problems providers experience. This care ultimatel y helps patients and providers come to a place where they are ready and able to connect with each other. However, to get there, healing and alleviating existing problems must take place; outreach workers provide this care. In one sense, this healing is a m eans to the end of getting patients and providers to be able to connect. However, when observed for what it is, this healing can be seen as an important contribution to diminishing the structural vulnerability patients have endured throughout their lifetim es. Healing Patients. Healing wounds of emotional trauma. A closer examination of the process that goes into outreach workers establishing trusting relationships with patients yields several important elements. First, several themes illustrate a very spe cific kind of collaborative approach that outreach workers utilize, characterized by simultaneous demonstrations of caring and respect. These actions appear to have several effects on a process of emotional healing for patients with histories of unhealthy relationships and/or trauma. Outreach workers demonstrate caring by: 1) spending time with patients, including doing leisure activities with them (walking, eating out, having coffee, visiting sites, watching TV) as well as just visiting and talking; 2) get ting to know patients as people by talking to them about non medical aspects of their lives; 3) actively listening to patients; and 4) continually showing up in patients' lives (either by calling or visiting to
! 54 check in on the patient or by showing up at t he ER or hospital even when they are continually admitted). In conjunction with this demonstration of caring about patients, outreach workers also demonstrate respect for patients by: 1) being transparent with patients (i.e. getting to the point when talk ing with patients about important matters or when addressing patients' difficult issues, as well as sharing information about their own lives and experiences); 2) being non judgmental of patients (particularly about the choices patients make or about what kind of person they are); and 3) being non authoritative (i.e. not telling patients what to do, but rather, providing their opinions as one perspective patients can choose to consider). In combination, the caring and respect that outreach workers demonstr ate appear to produce an important overall effect for patients. It demonstrates for patients what a healthy relationship feels like, in which someone cares about them and at the same time also respects their personal agency. The experience of this kind of relationship lies in contrast to relationships that are missing one of these components, such as a controlling relationship (in which someone cares about the person but does not respect or allow the choices they make) or a neglectful relationship (in which someone does not demonstrate caring and so incidentally the person must rely solely on their own choices to survive). Caring and respect expressed at the same time might best be described as "dignity" or "unconditional love." Some participants described h ow outreach workers treat patients with dignity by recognizing that patients can make their own decisions and take care of themselves, even if they also need some support. The same concept can be expressed by
! 55 the term "unconditional love," in which someone cares about a person even when they do not always agree with that person's choices or behaviors. While outreach workers' application of caring respect serves as a tool for the outreach worker to gain trust from the patient, for patients who have historie s of unhealthy and/or abusive relationships (in childhood or adulthood), it appears that the relationship outreach workers form with them may also be a healing one. This is suggested by a theme describing the special relationship some patients have with th eir outreach workers. Participants explained that some patients perceive outreach workers as a unique person in their life who they can open up to about things they share with few others and who they feel they can depend on for help, advice, or just to be there for them when they need support most. Many participants explained that patients thought of their outreach worker as their friend, and some compared them to family members. The following quote from one outreach worker illustrates this kind of signific ance of the patient outreach worker relationship, and its potential for healing: One of the things that I've heard patients say is that they'll introduce me as their friend. We have the opportunity to create a sense of well being in our relationship with them. And that can be, potentially, the beginning of a healthier life. And that kind of relates back to that just showing up, without judgment. In the following excerpt, a patient's family member describes how she perceives the program's effect on the pat ient, illustrating the transformative effect that this caring respect seems to have: He's changed. He has more confidence, a purpose he gets out. I think it's given him a lot of confidence, he feels important. Just seeing him [now] he's glowing. That's how he was when he was a kid.
! 56 I just don't think he feels so alone anymore. He's treated with respect, which has lifted him up. He's accepted for who he is, and he has a say in his own life situation. It is also important to note that patients with his tories of unhealthy interpersonal relationships may also have a history of traumatic relationships with health care providers and institutions, as described earlier. Thus, emotional healing around relationships in general may contribute not only to patient s' renewed ability to form personal relationships, but also specifically in being able to apply that ability in working with providers. In addition to the combined effect of caring respect, two specific components of caring respect described above appear to contribute to emotional healing in an additional way. First, outreach workers allow patients to talk about what is on their mind and outreach workers actively listen. Second, outreach workers are transparent, which includes not avoiding patients' diffic ult issues but rather getting to the point and challenging patients to address them. These actions strongly resemble tactics used by mental health care providers, particularly cognitive behavioral therapy (Mayo Clinic 2013; Gutman and Haynes 2002:75) and m ay in fact serve similar purposes for patients' emotional healing. In an additional theme, several participants described elements of what outreach workers do that were either referred to specifically as mental health work or resembled it (including calmin g the patient down, processing through an emotional crisis, and working with a patient on a mental health barrier to accessing health care, such as social anxiety). Participants often described this work as being mental health care that happens "in the com munity" or in "real time." Thus, this ad hoc mental health care may contribute to the healing of emotional wounds brought on by traumatic relationships, as
! 57 well as at least partial treatment of the kinds of mental health problems like depression and anxiet y that have been shown to be positively affected through cognitive behavioral therapy (Gutman and Haynes 2002:74; Hoffman et al. 2012). This theme about mental health care provision, in addition to the concept of a caring respect relationship and its appar ent transformative effect, constitute hidden themes. Not only do they both lie in contrast to the commonly expressed notion described above that the program only serves to connect patients to existing services, but they appear hidden in other ways. First, the mental healthcare theme included a discrepancy between participants who described the program as including this care and participants who in fact stated explicitly that outreach workers do not act as therapists or provide mental health care. Second, wh ile the caring respect relationship was described quite clearly by many participants as an important aspect of establishing a collaborative, and therefore productive, relationship with patients, the idea that it may contribute to emotional healing and tran sformation can only be gleaned through the combination of an understanding of patients' histories and themes about program outcomes and the meaning of patients' relationships with their outreach workers. Temporarily bandaging wounds of poverty and margina lization. In the beginning phases of establishing a relationship with patients, several themes also point out how outreach workers take actions to directly address patients' self identified needs. This is when outreach workers take actions themselves, rat her than waiting until the patient is ready to address their own needs independently (which becomes available only in later stages of patients' participation in the program).
! 58 These themes include the outreach worker: 1) coordinating transportation for the patient, particularly, arranging to have a taxi pick them up to go to the clinic (rather than taking an ambulance to the ER); 2) checking in with patients and providers about concerns with medications; 3) making medical appointments on behalf of the patie nt; 4) talking with or calling medical or resource professionals to get information; 5) coordinating paperwork for social services; and 6) arranging acquisition of durable medical equipment. From one perspective, these actions can be viewed as merely part of a "building block" phase of the process of training patients educating patients about and drawing their attention to available services, making the first link, and demonstrating for patien ts the utility of ongoing actions so that patients will eventually take on these responsibilities themselves. And in fact, some of these actions appear to eventually be transferred to patients in such a way. The following quote from an outreach worker expl ains this perspective in regard to the skill of calling to make appointments at the clinic: But more importantly, the new pattern is I don't feel well;' she calls me; I get her an appointment in the clinic; she doesn't go to the ED. It can seem very minor She might even come in [to the clinic] more than once a week, but she's not going to the emergency room. So for her, it was a behavior change of like, showing her this [primary care] system is a better system it's easier, it's faster. And the next step w ill be getting her to call the front desk directly, and make those appointments for herself. However, from another perspective, it appears that some of this kind of work may be much less transferrable, and may in fact constitute a necessary service that o utreach workers provide. Outreach workers and other program staff often professed the former notion, that the program merely connects patients to existing services. And yet, through careful coding of participant descriptions, a discrepancy became evident, even between
! 59 different descriptions from the same individual participants, leading to the possible conclusion that patients are not able to take on all of the necessary skills and actions to fully utilize the healthcare and social service systems independe ntly, and that outreach workers are needed to provide these services on behalf of patients. In one theme, some participants described outreach workers as being similar to case managers, who provide the service of managing patients' social service needs. H owever, other participants stated explicitly that case management is not what outreach workers do, that outreach workers merely connect patients to existing resources. The more subtle evidence for this hidden perspective, however, comes out of how partici pants talked about medical literacy. The idea of a lack of medical literacy in this case was discussed as meaning patients not having the educational level or social capital to be able to effectively engage with the healthcare and social service systems. Q uotes from an outreach worker and a patient illustrate how this gap is something that outreach workers fill for patients: I have a pretty significant number [of patients] that didn't finish high school, for various reasons. Of those, I would say most have between a sixth and eighth grade reading level. And, the healthcare system in general doesn't give information at that level. Some, English is not their first language. And, you know, I spend a lot of time just paraphrasing information for people and brea king it down to a level that they're gonna understand. Because all this information and these resources, is confusing. I really just spend a lot of time navigating people through the system. Yeah, she listens to me. I explain some things to her, and tell her what's goin' on. And she gets on the phone and asks some questions for me. And she got more good answers than I do some words I can't be able to get it out. And she knows the answer, she's real good at that. The idea that outreach worker actions may n ot be able to be ultimately transferred to patients is also underscored by the ways that some participants talked about the
! 60 inadequacies of existing systems, particularly the healthcare system. A program staff person and an outreach worker describe this si tuation: The majority probably of the clients we serve come from very poor families, so they lack basic skills in navigating the medical system. Sometimes, we uncover that their educational status is pretty low, and all of the documents, medical provider s' language, are written at way higher level than they can comprehend. It's frustrating, and sometimes it causes people just not to follow through with recommendations of their doctor because they can't understand what these recommendations are. I love wo rking with the clients. [But] I want to bash my head into the wall when it comes to the medical system. It is not set up for poor people. There's all kinds of medical literacy issues. The systems are way too big and intimidate the hell out of people. It's way too white, way too middle upper class Thus, an image is created of the immovable barriers that patients experience when it comes to actually engaging with established systems to address their own needs. And while one perspective says that the progra m is successfully connecting patients to resources and then training them to be able to access those resources themselves when needed in the future, it is not entirely clear that this will be possible. It seems there is evidence in fact that they would not be able to access certain resources independently, without the education and social capital that is needed to navigate and engage with these systems. In this way, the actions that outreach workers take to address patients' needs can be considered actions that constitute a service that is otherwise non existent in the healthcare and social service systems one that bridges a gap between a complex and uneasily accessed social services system and a population that is overwhelmed by the daily struggles of pover ty and suffering from a lifetime of marginalization that keeps them from acquiring the social capital needed to interface with such systems.
! 61 In contrast to the healing that outreach workers provide for patients' emotional wounds, it seems that these wounds of poverty and marginalization are more difficult to heal. Instead, outreach workers appear to work around these wounds by standing in for patients when complex communication is required during engagement with formal systems. Ironically, the health and so cial services that patients seek are the very ones that may help them and their families emerge from the poverty that has inflicted these wounds. However, in the future, without their outreach workers at hand, patients may be at a loss to continue accessin g them. In the meantime, outreach workers do help patients access these services, and at least for the time being, patients have major structural barriers alleviated, such as transportation, housing, social security income, or food stamps. With the stabili ty that these services offer, patients can realistically move on to considering more basic concerns related to their health, and they can participate in the patient provider relationship as an "engaged" patient. However, it is unclear whether patients woul d be able to overcome these kinds of major barriers on their own if they were to reoccur in the future or require continued management, both of which necessitate engagement with highly formal systems that may be out of reach. Alleviating Problems for Provi ders. A closer look at the themes about outreach workers' process of "training" providers also yields hidden layers of what is actually taking place. While the interaction outreach workers have with providers contributes effectively to "training" provider s as "engaged" participants in the collaborative patient provider relationship, their interaction appears to also incidentally alleviate several chronic problems experienced by providers.
! 62 As described earlier, previous research shows that providers experi ence immense constraints on their time, which can contribute to feelings of being overwhelmed and easily frustrated. When confronted with patients with complex care needs, providers may feel especially overwhelmed not only because of their inability to add ress patients' social problems but also because these patients may have traumatic backgrounds and a lack of social capital, both of which may make their communication with providers seem hostile. Thus, providers may provide poorer care to patients with com plex care needs, or "difficult" patients. Additionally, according to existing research, providers may feel a lack of control over their practice in the face of increasing "productivity" and "accountability" requirements. Several themes point to the idea t hat the work of outreach workers appears to at least temporarily alleviate some of these constraints. Some participants explained that the program has decreased the amount of time providers spend with patients with complex care needs. This is likely becaus e the program helps address much of the time consuming social service and emotional health needs that patients previously brought to healthcare providers. The following excerpt from a clinic social worker describes an example: [Outreach worker] has a patient who is from [South Asia], and has lots of a different perspective on depression, for example. And we've tried to work with her in the past in the clinic, and the patient has lots of somatic complaints about her health. You k now, my back hurts, my head hurts, my neck hurts. But she would never say that she's depressed, because that word may not be part of her cultural understanding of how you talk about your experience, your health experience. That patient took an enormous amo unt of time, more time than any one of us can dedicate to one patient. So, having [outreach worker] on the case, where she's able to go and meet with the patient in the home and get more of a rapport going with her has been really helpful. And [outreach wo rker] has made a huge impact with her. And she takes less staff time now. And I would say she's doing better, health wise.
! 63 Providers' time may additionally be freed up because the process of outreach workers translating patient realities for providers may provide previously unavailable information that helps streamline providers' process of creating treatment plans for patients. The importance of translation is illustrated by the following excerpt from one provider : [The program] has been invaluable, becau se there are aspects of our patients' lives that we don't know about. And that can be anything from domestic violence going on, which helps inform the way I steer my counseling of a patient around contraceptive issues, around outreach to her own community, how to pace changes or let her have a little more time while she consolidates her social structures. Participants also said that providers feel better about their relationships with patients. The process of translation appears to contribute to these more positive emotions for providers. The following excerpt from one provider illustrates at once how translation helped the provider better serve a patient, but through this, how that translation also helped the provider feel better about working with a patie nt: I had this one patientwho had this litany of medical issues that all stem from him being so overweight. He and his wife were going to the ER once a week, if not more often. I had no idea how to work with him, because there was such a lack of underst anding the medical literacy gap was huge, and their understanding of how to use the medical system was so off from my experience or my preferences. [Outreach worker] started working with them. She went to his house, went on walks with the patient. At one point, she sent me a note. It said he and his wife, they're feeling frustrated. They feel like you don't understand what they're going through, and you just kind of chastise them when they come into the office.' And it was such a great bit of insight fo r me. The next visit, I totally changed the way I worked with him, the way I interacted with him, and it's made such a huge difference in our relationship. Now the patient is comfortable with me. Now instead of going to the ER once a week, they're calling the clinic every few days with questions. But I don't think it would have happened if she hadn't been there to act as the translator. I think that's a big part of what she does is she acts as a translator from the patient to us, and from us to the patie nt, and
! 64 helps so that our vision, the vision of the provider, and the vision of the patient, is more aligned. [Q: What is it that you do differently since getting that note?] I just don't feel frustrated anymore. And I'm able to portray not being frust rated. I'm able to let that come through, that it's not a 'Why aren't you doing things right?' It's a I understand this is really hard for you. I know you really want things to be different, and how can we make them different.' The work of outreach worke rs may also contribute indirectly to providers' improved emotions because of their work in healing emotional wounds of patients. Because of this, patients may no longer come across as hostile, or "difficult," when communicating with providers, and the prev ious frustration providers felt may be further alleviated. Lastly, providers may also feel less frustrated because patients' social and emotional needs are being addressed with help from outreach workers, and thus, providers can focus on the medical treat ment they are trained to perform without feeling overwhelmed by non medical problems. One provider explains his feelings of relief around no longer being responsible for addressing a patients' emotional health: And it's also a really big relief, honestly, to say I can focus on the medical stuff, and when this patient has a crisis of an emotional kind, there's somebody else there who's better trained and whose job is dedicated to, sort of, containing that crisis. Finally, there also seems to be some allevia tion of the lack of control providers experience in the current health insurance paradigm of accountability. In the process of building trust with providers, outreach workers use similar tactics as in the process of caring respect with patients, demonstrat ing both caring and respect to providers, as well. While the effect of this caring respect of providers achieves the aim of gaining trust, and thus contributing to the overall goal of training providers to be "engaged" in their
! 65 relationships with patients, it may incidentally help to rectify, or even heal, the chip on providers' shoulders caused by a restrictive system that mistrusts and effectively disrespects the capabilities of providers to make their own informed decisions about treatment through "produ ctivity" and "accountability" measures. Participants described this particular way in which outreach workers interact with providers -they actively listen, they are transparent, they do not judge providers or tell them what to do, and they do not take sid es with patients but instead treat providers with respect even if their opinions differ. One outreach worker 's description illustrates: There's this dance you have to do with everybody. You have to be committed to being nonjudgmental. The dance is listen ing to providers without judging them. And thinking, How do I take this information and make it useful for everybody?' Something's not happening. And maybe it won't ever happen, but that doesn't mean we can't try. So it's like, where is the opening in all of this tension that will allow this person to feel supported in whatever their path is? The following story from one outreach worker illustrates how she implemented caring respect with a provider by not siding with the patient and not telling him what t o do, even when it seems he was expecting the opposite. Notice in this excerpt that the provider's defensiveness drops when the outreach worker acknowledges his perspective being non judgmental in a way that is overt and therefore hard for the provider to miss. Additionally, she concludes by praising the provider, an act of caring. This [patient] is on methadone, but also using other street drugs, and has come to this provider before because they are in pain. This person followed up with me, and I want to honor her following up with me because she's on the streets, so I wanted to connect. I'm gonna honor her effort and make this connection happen with her provider. So, I called her provider and said, Hey, can this person come in on this day? This is wh at's going on with her.' And he said [angry voice], I'm not gonna give her any pain medication.' That's what he said to me. And I said, That's your right. You don't have to do that But will you see her?'
! 66 And he said, Oh, ok. Oh, maybe I can try this.' And then I said, Yeah, that sounds good.' Thus, outreach workers appear to incidentally alleviate major constraints that providers experience, by allowing them more time (through decreasing the time needed for patients with complex care needs), contributing to a more positive emotional experience (through translating patients' realities to providers as well as indirectly through helping improve patients' social situations and emotional states), and potentially renewing providers' sense of control and being respected as capable providers of care (through acting with caring respect). Overall, hidden themes thus demonstrate how incidental aspects of the process outreach workers take to move patients and providers toward connection sometimes end up he aling, bandaging, or alleviating the structurally inflicted wounds and problems that they previously experienced. It appears that this hidden healing does contribute to the intended goal of patients and providers taking steps to engage in a functioning, co llaborative relationship. However, the hidden nature of such healing is problematic. In order for this program to make full use of all components of its intervention, hidden components must be made explicit so that they can be consistently applied by all s taff for all patients and providers, as well as measured and compared in program evaluation and research. An understanding of the structural vulnerability experienced by patients with complex care needs and a conception of how patients' problems can be see n as structural wounds may be helpful in framing the importance of actively addressing such wounds for administrators and on the ground staff of high utilizer programs. By engaging with several concepts in the medical anthropology literature, particularly new work around "structural vulnerability," I aim to illustrate the utility of such constructs for innovative
! 67 high utilizer programs. In this way, I show how my findings add to the literature that demonstrates the relevance of the "structural vulnerability conceptualization of structural violence for ground level work in the clinical setting (Quesada et al. 2011).
! 68 CHAPTER V DISCUSSION As illustrated above, the high utilizer patients participating in this program are extremely structurally vulnerable due to many factors. Their backgrounds and social situations are largely characterized by social and economic instability and insufficiencies, and thus their immediate environments constrain their personal agency through forces of structural violence. These co nstraints, particularly factors of poverty and trauma experience, appear to fuel and work synergistically with patients' multiple chronic physical and mental health problems (which also appear to interact), forming a complex and vicious syndemic that leads to desperate, and what often seem hopeless, health realities for patients with complex care needs. Patients' realities are further constrained when they attempt to access health care, an environment in which they often experience providers with little ti me who appear not to care about them or their perspectives and who seem unable or refusing of helping them. Patients also often experience difficulties with treatments, encounter exclusion from services, and may be treated as "undeserving addicts" if they seek pain medications. Patients experience difficulties accessing and interfacing with the healthcare system due to either language barriers or a lack of "medical literacy," which appears to be rooted in low education levels. Overall, patients' experiences in the healthcare system are steeped in negative emotions, including mistrust, fear, and stress. In one sense, these patients' experiences in the healthcare system can be described as ones that are made challenging by the assumptions of "medical authority ," particularly the "medical gaze," which
! 69 discredits and ignores patient input that does not align with provider narratives (Good et al. 2003). However, an understanding of the way that structural violence operates through social hierarchies can help expa nd our understanding of the factors affecting patient vulnerability. Holmes (2011) explains in his work on farm hierarchies how, in fact, structural vulnerability can be perceived as a "continuum" at all levels of hierarchies, the effect at each level funn eling downward to pool and be experienced most intensely by individuals at the bottom. In the present study, it has been shown how the constraints that providers experience (time constraints; difficulties working with complex patients) are in fact structur ally induced problems to which providers are structurally vulnerable and largely powerless to change. As described earlier, providers who feel powerless under their constraints may be forced to limit or deny care to complex patients (Horton 2006), or they may turn to "victim blaming" (Horton 2006; Willging 2005). Data from the present study show how providers become frustrated with complex patients, adding to the difficulty of their interaction, or sometimes leading to refusal of service. In turn, it appear s that this structural vulnerability of providers feeds into the structural vulnerability of patients as a result of providers' altered behaviors. This vulnerability is experienced by patients as provider apathy or disrespect, and appears to contribute to patients' negative emotional associations with providers and avoidance of accessing care, as well as denial of care in some cases. Thus, we can see how the negative experiences patients have in the healthcare system are engendered by not only unconscious b eliefs in medical authority but by larger structural problems that constrain providers. Therefore,
! 70 attempts to address patients' structural wounds should also consider alleviating constraints experienced by providers. This program, like most high utilizer programs, focuses its efforts on fostering connections and relationships between patients and providers, particularly primary care providers. This particular program largely emphasizes the need for these relationships to be based in collaborative patient c entered care. In line with the deliberative model of care, in which patients are cast as active and equal participants with providers in their efforts to improve patients' health, collaborative patient centered care is aimed at providing a solution to the divisive and harmful results of medical authority. It appears that the program largely accomplishes this goal and that patients and providers are often brought together in better functioning, and sometimes very positive, relationships. Outreach workers fac ilitate these relationships through a connection process that requires a collaborative type of "training" for both patients and providers. While this connection process was often presented as the only thing the program does, by looking more deeply at part icipant discussions, I have uncovered how the program in reality provides hidden healing of structural wounds, as well. By understanding that these wounds are structurally inflicted, we can see that medical authority a "cultural" level concept is only one factor in a larger structural context that hinders the agency of patients with complex care needs. Structural factors stemming from poverty and discrimination, as well as the structural vulnerability of providers as it is translated downward to patients in the form of medical authority, engulf these patients in a flood of structural violence that leaves them devastated. Thus, attempts to rectify problems that stem from medical authority by connecting patients and providers in
! 71 relationships based in patient centered care can only be so effective without also addressing larger structural problems. In this study, we have seen how one program in fact addresses some of these structural wounds, even if unconsciously. Let us review the kinds of wounds addressed in this program and the ways they were addressed, and then proceed in understanding how these hidden processes can be made more intentional. Themes pointed to two hidden structural wounds experienced by patients: 1) needs for emotional healing, particularly m ental health needs associated with traumatic relationships and/or experiences; and 2) limited educational level and/or ability to communicate within formal systems (particularly the healthcare and social services systems). Patients' needs for emotional hea ling appear to be addressed through outreach workers' establishment of meaningful relationships with patients characterized by "caring respect," as well as aspects of outreach workers' approach that may serve similar purposes as psychotherapy. From partici pant descriptions, it appears that this healing can make a large impact in the lives of patients with histories of unhealthy relationships (both social ones and those with providers). Patients' limited abilities to interface with formal systems was shown t o be a structural wound that is less easily healed, but rather is often only temporarily bandaged by outreach workers who can stand in for patients when they have difficulty accessing services. For interventions like this program, these kinds of immediate approaches to addressing structural wounds may be the most readily available option, and therefore may have important effects on reducing the structural vulnerability experienced by patients. In order to be effective, programs will need to not only make su ch practices explicit components of their interventions, but they will also need to consider what services can
! 72 be offered during limited time frames and which may need to be provided as on going supports (e.g. access to staff that can interface with formal systems on a patient's behalf). Analysis also pointed to participants' descriptions of the difficulties that providers experience as well as the hidden ways that outreach workers alleviate these problems. Providers were described as being highly constrai ned by a lack of time as well as experiencing frustration trying to work with patients that have emotional/mental health problems, both of which negatively influence the care that patients receive. Hidden themes suggest that the work outreach workers do in the aim of connecting patients and providers ends up incidentally alleviating some of these time constraints and feelings of frustration. These outcomes appear to largely result from outreach workers' efforts to heal patients' emotional wounds, their abil ity to help patients access care and services external to the primary care clinic, as well as the translation they provide for providers about patients' realities. Thus, much of what outreach workers do to alleviate provider constraints stems from the wor k they do to help patients, as described above. The translation that outreach workers provide specifically for providers is another important service that should be made explicit in high utilizer programs. Similar to the issue of patients' need for outreac h workers in accessing formal systems, the question can be posed: Is translation of patient realities something that providers can eventually learn to do themselves, or is it an on going need? Participants described translation largely as something that is only possible due to outreach workers' extended time availability and geographic flexibility with patients, as well as their freedom to explore non medical topics with patients. Without
! 73 these abilities, providers were described as unable to access the kin d of knowledge that outreach workers can provide them through translation. Overall, these hidden elements of the program work to directly address the structural wounds of patients as well as the structural problems of providers that contribute to such woun ds. Such a direct approach to addressing structural vulnerability aligns with the call to apply this theory in the clinical setting set forth by Quesada et al. (2011). These authors describe how the concept of "structural violence" places focus on a socio political structure that is in reality quite difficult to shift, and that is especially unrealistic territory for on the ground providers of care and services. In contrast, "structural vulnerability" brings the focus back to the ground level and the indivi dual patient which is the subject of providers' work. Quesada et al. (2011:350 351) propose applications of the concept that include: 1) implementing "structural vulnerability checklists" to expand awareness of structural vulnerability and the need for inc reased "medical, social service, and political" resources, as well as decreasing blame of patients through this process; 2) "includ[ing] structural vulnerability as an etiologic agent" across healthcare systems; and 3) measuring the effect of structural vu lnerability awareness on clinical outcomes. Results of the present study demonstrate an additional application of the structural vulnerability concept in the clinical setting. By directly addressing patients' structural wounds and the structural constraint s of providers, this program shows that certain aspects of structural vulnerability can in fact be attended to healed, bandaged, or alleviated by professionals in the healthcare field, if they are given wide parameters. In contrast to traditional healthcar e providers, outreach workers are afforded the flexibility of time, geography, and subject matter to effectively attend to these wounds and
! 74 problems. Thus, high utilizer programs, many of which allow their staff this kind of flexibility, may work in tandem with efforts to increase providers' utility of structural vulnerability in treatment plans by doing the work of diminishing at least some of the structural vulnerability experienced by patients with complex care needs.
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