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DEFINING the BIOCITIZEN in PLURALISTIC HEALTHCARE SETTINGS: the ROLE of PATIENT CHOICE by Rachel Anne Chamberlin B.A., Eckerd Co

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DEFINING the BIOCITIZEN in PLURALISTIC HEALTHCARE SETTINGS: the ROLE of PATIENT CHOICE by Rachel Anne Chamberlin B.A., Eckerd Co DEFINING THE BIOCITIZEN IN PLURALISTIC HEALTHCARE SETTINGS: THE ROLE OF PATIENT CHOICE by Rachel Anne Chamberlin B.A., Eckerd College, 2011 MPH, University of Pittsburgh, 2018 Submitted to the Graduate Faculty of The Kenneth P. Dietrich School of Arts and Sciences in partial fulfillment of the requirements for the degree of Doctor of Philosophy University of Pittsburgh 2018 UNIVERSITY OF PITTSBURGH THE KENNETH P. DIETRICH SCHOOL OF ARTS AND SCIENCES This dissertation was presented by Rachel Anne Chamberlin It was defended on April 19, 2018 and approved by Martha Anne Terry, PhD, Associate Professor, Departmental of Behavioral and Community Health Sciences Joseph Alter, PhD, Professor, Department of Anthropology Penelope Morrison, PhD, Assistant Professor, Departmental of Biobehavioral Health John Frechione, PhD, Senior Research Associate, Departmental of Anthropology Dissertation Advisor: Kathleen Musante, PhD, Professor, Departmental of Anthropology Affiliation] II Copyright © by Rachel Anne Chamberlin 2018 III DEFINING THE BIOCITIZEN IN PLURALISTIC HEALTHCARE SETTINGS: THE ROLE OF PATIENT CHOICE Rachel Anne Chamberlin, PhD University of Pittsburgh, 2018 This dissertation examines how ontologies of “personhood” are introduced and reinvented by members of healthcare systems, and how the choices of patients who opt out of public healthcare are informed by a nonconventional view of personhood in Florianópolis, Brazil. I argue that the Democratization of the Brazilian healthcare system in 1988, created a conventional vision of the “New Brazilian (bio)Citizen” that has been institutionalized by the public healthcare system and reimagined or resisted by patients who seek care outside of the system. Rather than adopting the ontology of the New Brazilian (bio)Citizen as codified in the 1988 constitution, patients have built in additional ideas about the relationship between health, the self and their rights and responsibilities as citizens of Brazil and members of humanity. As such, they can be thought of as nonconventional biocitizens who illustrate their “alternative” personhood in the choices they make as patients. Based on twelve months of ethnographic research with an Anthroposophic Clinic and seven public health posts in Florianópolis, Brazil, and work with the Secretary of Health’s Commission on Integrative Health Practices, I describe how patients who mix services or opt out of quality free public healthcare entirely, are making choices that are influenced by a vision of personhood that contrasts the “New Brazilian (bio)Citizen.” I argue nonconventional biocitizens reject the biomedical personhood underpinning public healthcare, but often do not reject biomedicine itself. Nonconventional biocitizens position themselves differently in relationship to IV healthcare providers, and express different positions on health and the rights and responsibilities of patients and physicians compared to conventional biocitizens. These differences are important to understanding patients’ choice of provider and/or treatment. Finally, I examine the implications for incorporating personhood in considerations of patient choice. While patients who opt out of biomedical care are often cast as noncompliant, their resistance to conventional care can be viewed as a strategy to execute the responsibilities and rights that align with their understandings of their own membership as nonconventional biocitizens. Understanding how and why individuals choose providers and treatments offers a wider picture of what patients expect, need and search for in healthcare services. V TABLE OF CONTENTS 0.0 DEDICATION .......................................................................................................... XIII 1.0 PREFACE ................................................................................................................. XIV 2.0 INTRODUCTION ......................................................................................................... 1 2.1 STATEMENT OF THE PROBLEM: BRAZILIAN CITIZENSHIP AND HEALTHCARE CHOICE .................................................................................................. 1 2.2 OUTLINE OF THE DISSERTATION .............................................................. 3 3.0 CHAPTER 1: THE THEORETICAL AND CONTEXTUAL BASIS ..................... 6 3.1 BIOPOLITICS ..................................................................................................... 8 3.1.1 Medicine’s role in social change, nationalism and the legitimation of the nation state ................................................................................................................... 13 3.1.2 The institutionalization of the protection of biovalue through health as a human right.................................................................................................................. 15 3.1.3 Membership, risk and medical participation: biocitizenship and biosocialities ................................................................................................................. 18 3.2 HEALTH SYSTEMS: GLOBALIZATION, TRANSNATIONAL HEALTHCARE AND THE GEOPOLITICAL FORCES SHAPING MEDICAL SYSTEMS ........................................................................................................................... 23 3.2.1 Medical hierarchies and the quest for authenticity and legitimacy .......... 32 VI 3.3 MEDICAL PLURALISM: INTEGRATION OF BIOMEDICINE AND INTEGRATIVE MEDICINE – COOPERATION OR ANNEXATION? .................... 35 3.3.1 Conflicting constructs: modernity and science vs. traditional medical and culture forms and values) ........................................................................................... 38 3.3.2 Navigating pluralistic healthcare settings: patient choice ......................... 42 3.4 CONCLUSION .................................................................................................. 49 4.0 CHAPTER 2: METHODS AND RESEARCH SETTING ...................................... 52 4.1 RESEARCH SETTING .................................................................................... 52 4.1.1 Choosing the healthcare context: the importance of the Brazilian context and SUS ........................................................................................................................ 53 4.1.2 Context for the creation of SUS and the Brazilian biocitizen.................... 54 4.2 SUS IN FLORIANÓPOLIS: THE RESEARCH SITE .................................. 57 4.2.1 Choosing the field site.................................................................................... 60 4.2.2 Choosing the case study: why Anthroposophic Medicine .......................... 61 4.2.3 Preliminary research in Florianópolis ......................................................... 63 4.2.4 Description of the Anthroposophic Clinic Site............................................ 64 4.2.5 Descriptions of Public Health post sites ....................................................... 68 4.2.6 Data Collection and Methods ....................................................................... 69 4.2.7 Limitations ..................................................................................................... 74 4.2.8 Data Analysis.................................................................................................. 76 5.0 CHAPTER 3: O SISTEMA ÚNICO DE SAÚDE AND THE PRODUCTION OF PERSONHOOD .......................................................................................................................... 78 5.1 SUS FROM THE PERSPECTIVE OF SUS PHYSICIANS: ........................ 80 VII 5.1.1 SUS as a national program and “local” reality: ......................................... 80 5.1.2 SUS: the mission and the profession ............................................................ 84 5.1.3 Saúde Collectiva and the public good ........................................................... 86 5.2 THE SUS APPROACH TO CARE .................................................................. 87 5.2.1 The organization and institutional aspects of SUS healthcare: ................. 87 5.2.2 SUS physician’s approach to care and defining “good” practice: ............ 89 5.2.3 PICs and cultural diversity in Brazil ........................................................... 94 5.2.4 The time and technology gap between the “old school” and “new school” approaches to care. ...................................................................................................... 95 5.2.5 The family doctor and the specialist ............................................................ 98 5.2.6 SUS healthcare’s struggle with medicalization ........................................... 99 5.3 CHALLENGES IN SUS .................................................................................. 104 5.3.1 The challenge of making a national Brazilian Biocitizen in a decentralized healthcare system ...................................................................................................... 105 5.3.2 The struggle between private and public practice .................................... 109 5.3.3 Changing medical culture in SUS .............................................................. 111 5.4 PATIENT DEMOGRAPHICS ....................................................................... 112 5.5 SUS PHYSICIAN PERSPECTIVES ON THE PICS AND THE PNPIC .. 116 5.5.1 PICs and fashionable medicine .................................................................. 116 5.5.2 Prescribing PICs
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