Tag: Ann Mongoven

Ebola: A Tough Teacher

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Ann Mongoven, Ph.D.

The unfolding tragedy of Ebola in West Africa offers painful ethical lessons about international epidemic control. International public health organizations should re-frame infectious disease preparedness along lines of natural disaster response. Stricken regions may need not only expert advice, but also the infusion of mobile infrastructure. Unstricken (as of yet?) populations must remember that the greatest danger of epidemics may be the psychological tendency to ascribe “Otherness” to the sick or vulnerable.

Lesson 1: Basic health systems are basic to health care.

This should be, but regrettably is not, a case of stating the obvious. Insuring basic medical supplies are on hand, designing incentives to encourage distribution of health professionals according to needs, and equalizing access to care are economically and politically tall orders in wealthy countries, let alone resource-challenged ones. Developing basic health infrastructure does not give glory to aid organizations the way targeting a specific disease does—even though virtually all disease-fighting depends on that.

Army-researcher-Ebola
Army researcher fighting Ebola on front lines. Photo by Dr. Randal J. Schoepp.

It is a basic problem that not all countries have basic health systems in place, while others have systems so basic that there is no reserve to confront a new threat. Ebola is exploding in countries that were already systems-stretched. This contributes not only to its spread, but also to what Medicine Sans Frontiers director Dr. Joanne Liu calls the “emergency unfolding within the emergency.” The demands of trying to contain Ebola have drained all regional health resources and staff, leaving people with “ordinary” acute crises—malaria, tuberculosis, AIDS, complicated childbirth—with no care.

International epidemic control vehicles such as the CDC’s famed Epidemiological Intelligence Service and similar units within the World Health Organizations are framed as consultants to health systems. They provide concerted expertise, surveillance systems, and sometimes highly specialized laboratory services not expected to be available locally. But advice to health systems, no matter how good, can’t be effective when there is no effective health system to take the advice, or when a minimal health system is inundated by an epidemic.

The campaign against Ebola needs an infusion on the ground of organized public health professionals who will not only roll up their sleeves and don gloves, but also bring the gloves. Ebola teaches that international epidemic control must be modeled after international aid for natural disasters. Mobile units that can deliver an infrastructure—in this case protective gear, IVs and tubing, clean needles, disinfectant, etc.—should be stockpiled for ready deployment. Disaster relief first responder organizations should include infectious disease professionals and volunteers. As Dr. Liu argues, international response to Ebola should have looked more like international response to the earthquake in Haiti.

Lesson 2: Disease stigma is as life-threatening as disease.

This Ebola outbreak began in March. It was a multi-town outbreak by the time it was recognized, the result of travel to the funeral of the first victims by out-of-town relatives. Initially the outbreak straddled the border of three countries: Guinea, Sierra Leone, and Liberia. (It has since spread to Nigeria, probably by air travel.) Epidemiologists and aid workers sounded an international alarm in response. The world yawned.

In her classic, Illness as Metaphor,¹ Susan Sontag dramatized the delusional tendency of the well to ascribe to the sick the character of a threatening “Other.” The sick Other is perceived as somehow morally inferior, somehow different, somehow vulnerable in ways that the well wish not to think so of themselves.

In this case, the view of the Other may have preceded the epidemic. The world’s initial yawn reflects the extent to which Africans are generally viewed as Other by many of the world’s non-African affluent. A terrible threat causing lost lives may have been dismissed as routine for those Others in West Africa, though it would be anything but for themselves. And despite the dispersed initial presentation, a wrong-headed conception of isolated rural villages lulled the international community into thinking the epidemic would be quickly contained. When SARS broke out in urban China and Singapore, everyone realized the danger of geographic mobility, from migrant workers to bankers. But somehow the geographic mobility of Africans, and the interconnection between urban and rural Africa, came as a surprise.

People already defined as Other become even more Other than other ill when they get sick. Yet the begged question of whether racism contributed to the too-little-too-late international response to the epidemic seems studiously avoided in public discussion. Hurrah for the courage of the satirical Onion, which headlined a recent edition “Ebola Vaccine At Least 50 White People Away.”

President-Sirleaf
Liberian President Ellen Johnson Sirleaf

The power of Liberian President Ellen Johnson Sirleaf’s personal call to President Obama—requesting that highly limited supplies of new experimental drugs be made available to some West African patients, not only to returned white expatriate aid workers—rested on the unacknowledged racism that it dramatically combatted. Here was the Harvard-educated African president of a nation created by ex-American slaves begging the half-African president of the United States to include Africans in potentially life-saving therapeutic drug trials for an African epidemic. (Ironically, due to pharmaceutical outsourcing, Africa may bear disproportionate ethical risk for the routine development of new drugs in clinical trials—without necessarily receiving corresponding benefit.)

The characterization of victims as Other intertwines with the rhetoric of a “war on disease” in dangerous ways. The prevalence of war metaphors for medicine and public health increased after the totalizing nature of the second world war. That family of metaphors has been newly accentuated by current world attention on international terrorism. But what are we “battling” when we “fight” that “terroristic” virus, Ebola? As Sontag notes, there is a fine line between characterizing disease as the enemy and concluding the diseased are the enemy. If “harborers of terrorists” can be treated as terrorists in the “war on terror,” then why not Ebola patients? Ebola sufferers become viewed not as victims of bad luck, but as morally suspect.

Ascribing ontological and moral Otherness to sick people fuels disease stigma that is as life-threatening as the disease itself. It encourages people to deny illness for the sake of self- and family-protection. This is especially true when local resources are strapped to the point where reporting or quarantining may bring down the full weight of disease stigma without offering significant medical treatment. The degree of stigma that has come to be associated with Ebola, as well as the resistance of sick or vulnerable people to being portrayed as the enemy, explains otherwise health-defeating phenomenon in the epidemic. In Monrovia, Liberia, healthy people overran an Ebola clinic, urging patients to leave, scattering bloody sheets, and claiming there is no such thing as Ebola. Also in war-recovering Liberia, the war-like image of barbed-wire fencing quarantining a 50,000-person suburb prompted the defensive (but not to Ebola) response of the inhabitants storming the barricades. Social re-framing to reduce disease stigma will be as important as any medical breakthrough to the containment of Ebola—and of future terrifying, but not terrorist, epidemics.

References:

mongovenAnn Mongoven, Ph.D., is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, September 11, 2014. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.

Bioethics for Breakfast: ACOs: Are They New or Just HMOs in Sheep’s Clothing?

bioethics-for-breakfastJanet Olszewski, MSW, and Ann Mongoven, Ph.D., presented at the Bioethics for Breakfast event on Februray 20, 2014, offering views on the topic, “ACOs: Are They New or Just HMOs in Sheep’s Clothing?”

The Affordable Care Act (“ACA”) and many contemporary health policy analysts promote the development of Accountable Care Organizations (“ACOs”) as a desirable change in the health care delivery system and insurance landscape. They believe ACOs will be able to increase health care value by simultaneously improving quality and lowering costs. Currently, Medicare demonstration projects initiated by the ACA are developing ACOs, while private payers are also experimenting with them, including “the Blues” in Michigan.

Accountable Care Organizations have been introduced as a new attempt to integrate finance and delivery systems, develop global budget targets for regional populations, improve quality and efficiency of care through increased coordination of care and better align financial reward with efficiency and value of care provided. That set of goals is quite similar to those set forth when Health Maintenance Organizations (“HMOs”) were introduced last century. The speakers examined the history and evolution of HMOs, assessed the extent to which ACOs resemble HMO health financing and delivery schemes, and explored ethical tensions embedded in new ACO configurations.

Janet Olszewski, MSW
In her current role as Principal of Health Management Associates, Ms. Olszewski assists institutional clients with strategic planning related to health reform. Formerly, she was the Director of the Michigan Department of Community Health during the Granholm administration (2003-08). While director, she oversaw the development of a new Medicaid managed care program and a patient-centered medical home initiative. Ms. Olszewski spent more than 23 years working for the State of Michigan in various capacities. She is also a former Vice President of M-Care, a health plan owned by the University of Michigan.

Ann Mongoven, Ph.D.
Ann Mongoven is an assistant professor in Michigan State University’s Center for Ethics and Humanities in the Life Sciences and Department of Pediatrics. She is the author of Just Love: Transforming Civic Virtue (Indiana University Press, 2009). Her research interests are in public health ethics. She directs a multi-faculty health policy course for MSU medical students.

About Bioethics for Breakfast:

In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Ethics to partner on a bioethics seminar series. The Center for Ethics and Hall Render invite guests from the health professions, religious and community organizations, political circles, and the academy to engage in lively discussions of topics spanning the worlds of bioethics, health law, business, and policy. For each event, the Center selects from a wide range of controversial issues and provides two presenters either from our own faculty or invited guests, who offer distinctive, and sometimes clashing, perspectives. Those brief presentations are followed by a moderated open discussion.

About the Center for Ethics’ current Professorial Assistants

Honors_College_logoEach year, approximately 200 freshmen are appointed as Professorial Assistants (PAs). PAs work with regular members of the teaching faculty on tasks directly related either to scholarly research or to innovative teaching. — MSU Honors College

The Center currently has five PAs working on projects with respective faculty members Len Fleck, PhD; Margaret Holmes-Rovner, PhD; Karen Kelly-Blake, PhD; and Ann Mongoven, PhD, MPH. Continue reading to meet the Center’s PAs and the projects they are working on…

The Hunter’s Last Quest: The Idolatry of Autonomy

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Ann Mongoven, Ph.D.

The tragic case of a young man’s hunting accident and subsequent death has made national news.  The 32-year old Indiana man’s spine was crushed when he fell out of a tree while deer-hunting. The fall left him paralyzed and likely permanently ventilator-dependent. The day after the accident, with the support of family—including his newlywed pregnant wife—the patient asked to have the breathing tube removed.  His wife attested he had told her previously he would never want to live in a wheelchair.  Physicians honored the request and the man died five hours later, surrounded by loved ones.

Of course the medical team’s decision to support his request for withdrawal of life-sustaining treatment was framed in terms of “respecting autonomy.”  Perhaps some on the medical team felt torn by a perceived classic dilemma between autonomy and beneficence.  Nonetheless, they apparently equated honoring the request with quintessentially American “tough love.” Indeed some bioethicists have spoken of the case as embodying the essence of autonomy, because the patient himself decided. (NBC News; CNN)

But in this case, the appeal to autonomy was nothing short of idolatry. Its worship separated medicine from the ground of its being:  the call to be present to patients and families in the profound identity crisis of serious illness or injury.

The ideal of autonomy diverted attention from the genuine lack of patient autonomy. A day after a shocking accident, patients are in shock–literally and figuratively. Moreover, trauma professionals report that those who have lost functions from sudden injury have the dimmest assessment of their future prospects right after the event. Understandably, they are in deep grief for what has been lost.

Full autonomy consists of two elements, one inner and one external. Inner autonomy is the ability to form an intentional life plan. External autonomy is having the freedom and control to pursue one’s intentional life plan. The terrible fall shattered both for the paralyzed hunter in the short-term. In his shock and grief, he saw only what he could no longer plan to do.  And he needed assistance to do anything. Honoring the request for withdrawal of treatment provided the cruelest illusion of control. It facilitated external autonomy when there was no real inner autonomy. The idolatry, then, was more accurately a genuflection to individual freedom rather than to true autonomy.

Death is irreversible.  Asking to die is not.  A medical version of the precautionary principle argues for time and carefulness before acceding to withdrawal of treatment in such cases, assuming pain and discomfort can be controlled. The precautionary approach generally is standard medical practice. In fact, consistency of desire for withdrawal is one of the factors interpreted as evidence of inner autonomy when patients request removal of life-sustaining treatment. The hunter’s case would be a far different one if he had gotten the best support possible but still desired withdrawal from the ventilator after several weeks, or months.  Delay of decision-making amidst shock and grief can honor genuine autonomy. Good physician-communicators regularly assure their patients that they are taking time to be sure they understand what the patient wants. If the time-press for removal was because it was not clear the patient would remain vent-dependent, that would beg questions of staff intent: remove treatment experienced as overburdensome, or actively assist a suicide?

The medical team’s response violated the precautionary principle, ignored what is known about psycho-social experience of trauma, and mistook external autonomy for the whole of autonomy.  These ethical errors are so large that the question at hand is not: “Should the medical team have prioritized autonomy over medical beneficence?  Rather it is: “What was going on that made them see that as the question?”

In his book, The Patient’s Ordeal, William May criticizes contemporary bioethics’ fascination with dilemmas, as well as its procedural focus on the question of who should decide. In his view, those foci deflect attention from serious “how” questions.  Direly injured patients face the ultimate “how” questions: “How can I go on?  How can I become to some extent a new person—since I can never be who I was before (the hunter, the athlete, etc.)?” The trauma inflicts the most severe form of identity crisis. May thinks the crucial question for those caring for someone in such extreme identity crisis is: “how can I support him to go on, becoming in some ways a new person?”

May’s book resulted from his anthropological field studies in trauma units.  In anthropology he finds clues as to how, indeed, caregivers can support. Drawing on analyses of rites of passage, May argues the trauma patient is in liminal period, betwixt and between the old life to which he cannot return and some new life. Religious and cultural traditions around the world have responded to the psychological perils of liminal periods by developing rites of passage. Rites of passage escort people from childhood to adulthood, singlehood to marriage, death to the beyond. These rituals have a common structure: they symbolically recognize the current social separation of the subject; they provide the subject with special counsel from wise elders who have gone through the same perilous passage; and they re-aggregate the subject into society in a new role. According to May, the first response to patients in dire situations like the fallen hunter should be to recognize the fundamental crisis is an identity crisis. Then, caregivers need to orchestrate supportive rites of passage.

What that means can be humbling to modern medicine. The wise elders here are not those with white coats. Rather, they are those who have gone through the same perilous passage.  Were the hunter and his family put in touch with others who had faced sudden paralysis? Such efforts shouldn’t be manipulative. He needn’t be exhorted with comparisons to Christopher Reeve—it would be unfair to expect all to be superman.  Real elders available to talk to him and his family might still struggle with questions about whether their life is worth living. But they show that it is possible to form new lives, whose worth can be questioned with real perspective.

Acknowledgement of the patient’s identity crisis is also humbling to modern medicine because it has no quick fix. No technologically racy procedure or new drug can assist. There is only the long haul of listening, of articulating back the realization that life indeed will never be the same, of adjusting palliation and referring to the various support services that can help– slowly over time– to shape a newly imagined life. The idolatry of autonomy is tempting because acceding to the first request for withdrawal is easier than all that. It may also be easier, initially, for some families who are grieving the death of the one they knew. They too are in a liminal period.  They too need ritual escort through their passage, so that they can affirm their role in the decision-making years, not only days, after the trauma.

What would have happened if the hunter and his family had been responded to as people in profound identity crisis, instead of as people sure of whom they are? We don’t know. Maybe a new, and ultimately embraced life, would have been shaped.  Or maybe, over time a true dilemma between autonomy and beneficence would have emerged, as the patient continued to insist he saw no future and desired removal from life-sustaining treatment. But it was the idolatry of autonomy to perceive the case as starting there.

References:

Almasy S, Martinez M. Paralyzed after falling from tree, hunter and dad-to-be opts to end life. CNN US. November 7, 2013. Retrieved from http://www.cnn.com/2013/11/06/us/paralyzed-indiana-deer-hunter-ends-life

May W. The Patient’s Ordeal. Reprint ed: Indiana University Press; 1991

O’Malley J. Indiana hunter paralyzed in fall chooses to end life support. NBC News Health. November 5, 2013. Retrieved from http://www.nbcnews.com/health/indiana-hunter-paralyzed-fall-chooses-end-life-support-8C11535734 


mongovenAnn Mongoven, Ph.D., is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Monday, December 16, 2013. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.

After Newtown: Public Health and Bioethics Frameworks for Deliberating Gun Policy

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Ann Mongoven, PhD

The tragedy of the Newtown massacre has prompted national reconsideration of gun policy. But will it prompt reconsideration of the frameworks for that discussion? Or will continued questions about ambiguous constitutional parameters entrench the discursive cross-fire in which individual rights are pitted against public interest, hobbling meaningful response? By asking different questions, public health and bioethics offer alternative frameworks that could foster pragmatic balancing of individual rights and public interests. These frameworks enable new approaches to reduce gun violence without eliminating responsible gun ownership.

Public Health. The stranglehold of a discourse framed on individual rights, despite lack of clarity of constitutional dictates, prevents gun violence from being addressed as a public health challenge. Certainly that is odd, given the magnitude of the threat gun violence poses the public. Moreover, like other dangers perceived as public health issues, that threat is characterized by traceable patterns of vulnerability and spread. More than 30,000 Americans die annually from gun violence; gun violence ranks second among accidental causes of death only to car accidents; it is the leading cause for those who die in domestic violence; it is one of the highest-ranking causes of death among youth; it is the number-one cause for African-American teens. Indeed, if any disease posed an analogous threat it likely would be identified as the first priority of the public health community.

Yet legislative barriers impede federal public health agencies from analyzing gun violence using public health methods. In a recent editorial in Journal of the American Medical Association, Arthur Kellermann and Frederick Rivara describe the history of those barriers and how they curtailed gun violence research at the Center for Disease Control and National Institutes of Health(1). Post-Newtown Congress should rescind those obstacles to scientific research on gun violence. Meanwhile, public health leaders such as New York Mayor Michael Bloomberg and faculty at the Johns Hopkins School of Public Health Center for Gun Policy Research underscore the relevance of traditional public health questions(2). What is the epidemiology of gun violence? What are its common vectors (what types of individuals, institutions, practices, guns or ammunition)? What are the pathways of spread? What populations are particularly vulnerable? What targeted interventions could shut down those vectors, pathways, and vulnerabilities? Public health professionals assume that advancing public health can require restrictions on individual liberty, but typically they seek the most public health “bang” for the least “buck,” not only in terms of dollars spent but in terms of individual liberty constrained. Thus they pursue evidence-based, targeted interventions rather than broad, ideologically-based approaches.

Not only public health, but also the field of bioethics, offers frameworks for thinking about gun regulation that could move us beyond national paralysis.

Principlism. A commonly employed “principlist” approach to bioethics asks how we can balance diverse ethical principles that are individually cogent but that may press against each other in a tragic moral universe. These principles include respect for individual autonomy, beneficence, non-maleficence, and justice. With gun violence striking down innocent individuals and disproportionately affecting identifiable groups, respect for the autonomy of gun enthusiasts is just one factor among many to be balanced by principlism. Principlist reasoning has developed rigorous strategies to negotiate dilemmas between ethical principles that are in tension. These include proportional analysis of harms and benefits, consideration of least infringing alternatives when one ideal must be limited for the sake of others, and the continued maintenance of partially-implementable aspects of those principles that are deliberately subjugated. All these traditions of reasoning provide deliberative infrastructure for a new approach to gun regulation, conceived as something other than “a zero sum game.”

Cases and Beyond; Patients and Beyond: Multi-Level Ethical Analysis. Bioethics continually questions the relationship between cases, patterns, and policy. The field has a time-honored history of working at the case level, in all its specificity, while also discerning and addressing ethically relevant commonalities among cases. This back-and-forth has enabled policy initiatives that simultaneously respond to patterns while acknowledging the uniqueness of patients, families, and providers (such as living wills and durable powers of attorney). Gun policy discussions need a similar back and forth. While there may be truth to the adage “hard cases make bad law,” we cannot afford to ignore patterns at play from Columbine, to Virginia Tech, to Aurora, to Newtown. Nor can we ignore patterns in the “slow bleed” of cases that remain outside the national limelight while taking a greater aggregate toll, such as the use of handguns in individual suicides. One troubling pattern is the frequency with which guns legally owned by one family member become vehicles for tragic gun violence by another. Bioethics’ historically individualistic moorings have been stretched to recognize that patients come enveloped in diverse webs of family and community. We must recognize that gun-users do, too.  Rhetoric that treats cases as isolated events and gun-owners at atomistic individuals will no longer do.

Virtue Ethics. So-called virtue ethics have become increasingly prominent in bioethics. Virtue ethics ask: “What kind of community (clinic, health care system, etc.) do we wish to be? How can we become that kind of community?” Virtue ethics can change the nature of gun control debates by focusing on the character of communities rather than on  individual rights.  Do we wish to be a community in which there are more guns than people? In which gun violence is a leading cause of death, especially for youth? In which there are no “gun-free” zones? In which our children routinely watch gun murders and suicides enacted in diverse “entertainment” media? If not, how can we cultivate becoming a different kind of community?

We don’t just need a new conversation on gun policy. We need a conversation with new conceptual frameworks. We need frameworks that help us think through gun regulation that successfully balances multiple interests. Public health and bioethics offer several. By pushing us to ask different questions, they may help us arrive at better answers.

References:
1. Kellermann AL, Rivara FP. Silencing the Science on Gun Research. JAMA. 2012;():1-2. doi:10.1001/jama.2012.208207.
2. Johns Hopkins Bloomberg School of Public Health Center for Gun Policy and Research website.

mongoven smallAnn Mongoven, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Friday, February 15. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Linking Community Engagement Research to Public Health Biobank Practice

Ann Mongoven, PhD, Assistant Professor in the Center for Ethics and Humanities in the Life Sciences was awarded a 5-year R01 grant in December 2010 from the National Institutes of Health. Her project, “Linking Community Engagement Research to Public Health Biobank Practice,” is part of a larger research project led by Sharon Kardia at the University of Michigan. The Michigan State University study will help drive public policy decisions and develop an improved consent process for the state’s bio-bank, known as the Michigan BioTrust. Jeff Proulx, a Health and Risk Communication graduate student, worked as a research assistant on the grant until his graduation in spring of 2012. Andrea Sexton, another Health and Risk Communication graduate student, joined the grant at that time to continue the research support. Read more about this study.