HEC Forum DOI 10.1007/s10730-015-9284-6

Introduction: Clinical Ethics Beyond the Urban Hospital Erica K. Salter1 • Joseph T. Norris1

Ó Springer Science+Business Media Dordrecht 2015

Bioethics, and subsequently clinical ethics, developed primarily out of concerns that arose in the context of urban academic acute-care medicine. The ‘‘life and death’’ conversations in the field’s early years predominantly culminated around questions about proper use of sophisticated life-sustaining technologies, technology that, at the time, could only be provided in a hospital setting.1 Thus, the field relied heavily (either consciously or subconsciously) on the particularities of this context for the creation of its most seminal concepts and practices, from informed consent to models of clinical ethics consultation. However, steadily over the past several decades the context of health care provision has shifted away from in-patient care and to (or in some cases, back to) modalities like home health care, ambulatory care, and telemedicine.2 Despite this shift, though, much if not most of the bioethics

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In fact, as understood by Edmund Pellegrino, the origins of bioethics (or ‘‘proto-bioethics’’) were characterized not only as an effort to make sense of these technological advances, but an effort to buffer the increasingly technical and specialized nature of medical education by introducing a non-technical, or humanistic component (Pellegrino 1999).

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For instance, data from the National Health Expenditure Accounts of the Centers for Medicare and Medicaid demonstrate that while hospital spending between 1990 and 2013 increased by about three and a half fold, home health care spending increased by more than sixfold. http://www.cms.gov/ResearchStatistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/NationalHealth AccountsHistorical.html.

& Erica K. Salter [email protected] Joseph T. Norris [email protected] 1

Center for Health Care Ethics, Saint Louis University, 3545 Lafayette Ave, St. Louis, MO 63104, USA

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literature still envisions the dramas of the field unfolding on the stage of the large, urban acute-care hospital (if it even specifies a physical context at all). The vision for this special issue of HEC Forum is to acknowledge this shift in the context of health care provision as significant for bioethics and, perhaps more importantly, to take place seriously as a factor in the way we create, understand and deploy bioethics ideas and practices. That our physical environment makes a difference in healthcare should not be surprising. Clinical ethicists and clinicians naturally make many decisions each day that implicitly place value on the power of the physical environment. Consider, for instance, how improper it would be to conduct a family meeting to discuss a patient’s case in a crowded hallway, the patient’s bathroom, or in the middle of the hospital cafeteria. Such meetings are usually arranged to take place in rooms that are comfortable, private and appropriately sized. Discourse regarding the effects of physical location, geography and space on healthcare (and in particular, healthcare outcomes) is becoming more and more common in many disciplines. Healthcare administrators and quality improvement professionals frequently examine how the physical environment affects patient safety; cognitive neuroscientists study how environmental attributes such as color, lighting, room layout and sound influence patient psychology and these data are then implemented by architects and interior designers to create facilities that contribute positively to patient healing. Indeed, there is an entire discipline in the social sciences called ‘‘medical geography’’, dedicated to exploring the effect of varying geographic landscapes on therapeutic processes. For example, medical geographers might join with epidemiologists in descriptive research on the spread of disease between geographic locations (Mao 2014), but they might also examine the therapeutic effects of the physical setting in which a physician diagnoses a patient (Romanucci-Ross 1983). However, discussion explicitly acknowledging the importance of place and physical context has yet to enter into mainstream bioethics discourse.3 In his book Getting Back Into Place: Toward a Renewed Understanding of the Place-World, phenomenologist Edward S. Casey explains the rejection of place in academic discourse as result of the abstracting influence of modernity: In the past three centuries in the West—the period of ‘modernity’—place has come to be not only neglected but actively suppressed. Owing to the triumph of the natural and social sciences in this same period, any serious talk of place has been regarded as regressive or trivial. (Casey 1993, p. xiv)

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It should be noted that there is work being done on the ethics of particular health care contexts. However, this has been done primarily through the publication of a few isolated articles by a small group of scholars. One notable exception is rural health care ethics, which has found a more significant body of scholars, including the National Rural Bioethics Project out of the University of Montana, directed by two of this issues authors, Ann Freeman Cook, PhD and Helena Hoas, PhD (see http://www.umt.edu/ bioethics/). Further HEC Forum dedicated an entire issue in 2004 to the exploration of ethical issues in the rural setting. However, these discussions have yet to expand into a large discussion of the role of physical space in clinical bioethics, generally.

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In this special issue of HEC Forum, we come alongside Casey by returning our attention not just to the importance of place, but, indeed, the centrality of it. ‘‘Where we are—the place we occupy, however briefly—has everything to do with what and who we are (and finally, that we are)’’ (1993, xiii). Thus, the places in which we, as ethicists, practitioners and patients, find ourselves are not merely the backdrop for the practices of clinical ethics, but a central player in the formation of those roles and practices. Rachelle Barina expands on this argument in the issue’s opening article ‘‘New Places and Ethical Spaces: Philosophical Considerations for Health Care Ethics Outside of the Hospital’’. Here, Barina argues that the physical environment is neither simply a passive material container, nor is it value-neutral. Applying the work of philosopher and sociologist Henri Lefebvre, Barina argues that all space (including the spaces of healthcare) is actually value-laden, and that our (healthcare practitioners as well as patients and families) thoughts, actions and beliefs both produce and are produced by these spaces. To demonstrate this claim, Barina turns to the modern intensive care unit and examines how the space of the ICU communicates very specific values. For instance, Barina points out that because monitors and screens are given prominence in ICU patient rooms, practitioners are easily lured into the habit of focusing attention on the patient’s vital signs and metrics, rather than on the patient herself. Barina’s interest in how ethics produces and is produced by spaces is further concretized by the results of Jung-hye Shin’s ethnographic study, described in ‘‘Declining Body, Institutional Life and Making Home; Are they at Odds? The Lived Experiences of Moving Through Staged Care in Long-term Care Settings’’. Shin is a design researcher who studies the relationship between people and their built environment and here she shares with us the results of an ethnographic field study conducted at four Catholic long-term care facilities. This study explores the effects of staged-care on elderly residents’ experiences of home, independence and dependence, loss, relationships and identity. The study’s results suggest that the experience of being moved through staged care contributes to a feeling of liminality, which may amplify fear and the experience of loss. Most residents tried to personalize their physical space to achieve a greater sense of continuity and identity. Despite this, however, often as residents developed interdependent and trusting relationships with other residents and caretakers, a desire for companionship exceeded the preference for privacy. While Shin is interested in how the identities and relationships of the elderly can be maintained and promoted in the long term care setting, in ‘‘Home-based Care, Technology and the Maintenance of Selves’’, Jennifer Parks argues that, when possible, this important work should be done at home. Allowing persons to receive healthcare at home is not merely a practical kindness or issue of convenience; it is an important means to extending and respecting their selfhood and is, therefore, a prima facie moral obligation. Further, because home-based technologies like telemedicine and robotic care are able to keep a patient in his or her home, they, too, ought to be seen as intimately connected to the critical task of preserving a patient’s self-understanding and self-constituting relationships. However, Parks warns that

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these technologies should be used to supplement, not replace, human contact and caretaking. Where Parks’ article explores how to provide better healthcare at home, Erica Salter’s article, ‘‘The Re-contextualization of the Patient: What Home Health Care Can Teach Us about Medical Decision-Making’’, uses home healthcare as a means to illuminate a deficiency in bioethics’ dominant understanding of medical decisionmaking. Salter argues that because these standards were formed out of a particular historical and philosophical environment (one that prioritized reason, rationality and individuality) and were created to fit a contrived environment (the standardized and anonymized environment of the hospital), they don’t actually accord with how real people make real decisions. Instead, Salter takes a lesson from the physical environment of home healthcare, arguing it should be the task of bioethicists and clinicians to re-contextualize patients, wherever they happen to be making medical decisions. In their article, ‘‘The Opportunities and Challenges for Shared Decision-Making in Rural America’’, William Nelson, Paul Barr and Molly Castaldo also share concerns about how standards of decision-making are operationalized, focusing on how the characteristics of rural locations influence the ability of physicians and patients to engage effectively in shared decision-making. Features like poverty, lack of access to health care, isolation, overlapping relationships and a shared culture create specific challenges for the rural patient-provider relationship. The authors recommend expanding the utilization of decision-aids, requiring additional graduate and post-graduate medical training and leveraging tele-health resources to connect rural clinics and hospitals to urban and academic medical centers. Ann Freeman Cook and Helena Hoas extend this discussion of the challenges presented by the context of rural health care into the domain of clinical research in their article, ‘‘Protecting Human Subjects When Clinical Trial Research is Conducted in Rural Communities: Do Traditional Ethics Concepts Apply?’’ The authors interviewed research coordinators and clinician-researchers involved in rural clinical trial research, a growing practice, in order to explore how this subset of clinical researchers understands and implements the traditional ethical standards of human subjects research. Their findings suggest that common to the rural research setting are issues of therapeutic misconception, conflicts of interest associated with dual roles, concerns related to physician recruitment and concerns about participant understanding. While these are issues common to the research enterprise generally, the authors found that very few of their study respondents experienced these facts to be ethically troublesome. The authors explore potential explanations for this phenomenon, including the possibility that because clinical trials often generate a large proportion of a clinician’s income, clinician-researchers may be inordinately concerned with maintaining industry relationships. Finally, Alexander Kon and Melissa Garcia turn to examine the problem of connecting clinical ethics experts to remote and rural clinicians, who as we’ve seen from this HEC Forum special issue, are by no means immune from ethical dilemmas. In ‘‘Telemedicine as a Tool to Bring Clinical Ethics Expertise to Remote Locations’’, the authors examine the pros and cons of several common remote communication modalities, including email, telephone, list-serves and telemedicine,

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against the goals of clinical ethics consultation, concluding that telemedicine is the preferred modality for providing expert ethics consultation to rural health care providers. As the most frequent testing ground for emerging technologies and medical innovation, the urban, academic hospital will always be a significant setting for clinical ethics. However, as the context of healthcare continues to evolve to accommodate practical and economic constraints as well as patient and family preferences, clinical ethicists will be more and more frequently beckoned into these new spaces to offer guidance. With this challenge in mind, this special issue of HEC Forum offers readers some preliminary insight on how to adapt to evolving contexts. And perhaps more importantly, it offers readers the opportunity to reflect on bioethics as necessarily an ethics in situ.

References Barina, R. (2015). New places and ethical spaces: Philosophical considerations for healthcare ethics outside the hospital. HEC Forum, 27(2). doi:10.1007/s10730-015-9277-5. Casey, E. (1993). Getting back into place: Toward a renewed understanding of the place-world. Bloomington, IN: Indiana University Press. Cook, A.F. & Hoas, H. (2015). Exploring the potential for moral hazard when clinical trial research is conducted in rural communities: Do traditional ethics concepts apply? HEC Forum, 27(2). doi:10. 1007/s10730-015-9270-z. Kon, A., & Garcia, M. (2015). Telemedicine as a tool to bring clinical ethics expertise to remote locations. HEC Forum, 27(2). doi:10.1007/s10730-015-9272-x. Mao, L. (2014). Modeling triple-diffusions of infectious diseases, information and preventive behaviors through a metropolitan social network. Applied Geography, 50, 31–39. Nelson, W., Barr, P. & Castaldo, M. (2015). The opportunities and challenges for shared decision-making in rural America. HEC Forum, 27(2). doi:10.1007/s10730-015-9283-7. Parks, J. (2015). Home-based care, technology and the maintenance of selves. HEC Forum, 27(2). doi:10. 1007/s10730-015-9278-4. Pellegrino, E. (1999). The origins and evolution of bioethics: Some personal reflections. Kennedy Institute of Ethics Journal, 9(1), 73–88. Romanucci-Ross, L. (1983). Folk medicine and metaphor in the context of medicalization: Syncretics in curing practices. In L. Romanucci-Ross, D. E. Moerman & L. R. Tancredi (Eds.), The Anthropology of Medicine (pp. 5–19). New York: Praeger. Salter, E. (2015). The re-contextualization of the patient: What home healthcare ethics can teach us about medical decision-making. HEC Forum, 27(2). doi:10.1007/s10730-015-9268-6. Shin, J. (2015). Declining body, institutional life and making home: Are they at odds? The lived experiences of moving through staged care in long-term care settings. HEC Forum, 27(2). doi:10. 1007/s10730-015-9269-5.

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Introduction: clinical ethics beyond the urban hospital.

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