Examining how doctors and patients distinguish between normal and pathological events through the case of epilepsy

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The 2022-2023 Bioethics Public Seminar Series continues this month with a webinar from Center Assistant Professor Megh Marathe, PhD, on “Expedient Classification: Diagnosis in Lived Experience and Medical Practice.” This virtual event is free to attend and open to all individuals. This event will be available as a live broadcast only.

Wednesday, March 22, 2023
1:30-2:30 PM EDT (UTC−04:00)
Zoom webinar registration: bit.ly/bioethics-marathe

This talk examines how doctors and patients distinguish between normal and pathological events through the case of epilepsy. Epilepsy is a chronic illness and disability characterized by recurrent and unpredictable seizures. Seizures are transient events during which people lose control over parts of body-mind function. The talk shows that the diagnostic boundary between seizure and non-seizure events is fluid, dynamic, and porous in lived experience and medical practice. Calling an event a seizure has consequences well beyond treatment, also affecting a patient’s financial stability, social participation, and life aspirations. Hence, doctors and patients take an expedient approach to classifying seizures, informally modifying the very definition of seizure to postpone or avoid severe consequences. Doing so enables doctors and patients to bend rigid classification schemes to suit the complex realities of people’s lives. This work advances scholarship on classification and expertise in information studies, science and technology studies, and disability studies.

Megh Marathe with Spartan helmet graphic

Megh Marathe is an assistant professor in the Center for Bioethics and Social Justice in the College of Human Medicine and the Department of Media and Information in the College of Communication Arts and Sciences at Michigan State University. Marathe’s research seeks to foster inclusion in expert practices and technologies by centering the perspectives of marginalized people. They do this by studying the experiences and practices of multiple stakeholders – doctors and patients, citizens and civic officials – that is, laypeople and professionals, people who are marginalized as well as those in powerful positions, to generate critical theory and practical interventions for inclusive practice and technology design. Marathe adopts an ethnographic approach that is inflected by their computer science training and software industry experience.

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What do clinicians think about using deep brain stimulation to treat obsessive-compulsive disorder in pediatric patients?

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The 2022-2023 Bioethics Public Seminar Series continues next month with a webinar from Center Assistant Professor Michelle T. Pham, PhD, on “Clinician Perspectives on the Potential of DBS for Pediatric Patients with Treatment-Resistant OCD.” This virtual event is free to attend and open to all individuals.

Wednesday, February 15, 2023
1:30-2:30 PM EST (UTC−05:00)
Zoom webinar registration: bit.ly/bioethics-pham

The World Society for Stereotactic and Functional Neurosurgery has argued that at least two successful randomized controlled trials should be available before deep brain stimulation (DBS) treatment for a psychiatric disorder is considered “established.” DBS is currently offered to children ages 7 and older with refractory dystonia under an FDA-humanitarian device exemption. No randomized control trials were conducted – practitioners relied on evidence from DBS use in adults. In addition, accumulated research supports the safety and effectiveness of DBS for obsessive-compulsive disorder (OCD) in adults (Wu et al. 2021).

Approximately 10-20% of children with OCD have treatment-resistant presentations, so it is likely that there will be interest in offering DBS for some children (POTS 2004). Both ethical and empirical anticipatory work is needed to evaluate whether, and if so, under what conditions it might be appropriate to offer DBS in this context. This seminar will present qualitative data from semi-structured interviews with 24 clinicians with expertise in this area regarding: (a) acceptable levels of evidence to offer DBS in this patient population and (b) institutional policies or protocols needed to effectively provide care for them.

Michelle Pham with Spartan helmet graphic

Michelle T. Pham is an assistant professor in the Center for Bioethics and Social Justice and the Department of Medicine in the Michigan State University College of Human Medicine. She conducts research in the interdisciplinary field of Neuroethics and connected issues in the Philosophy of Science. Some recent topics include promoting post-trial care for patient-participants in experimental brain implant studies and decision-making in the context of pediatric deep brain stimulation. Pham also researches ways to promote engagement with patient-participants who contribute to neuroscience and neurotechnology research; and she has raised the concern that patient-participants in these brain implant studies may be exploited.

Can’t make it? All webinars are recorded and available in our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our email list.

Bioethics for Breakfast: Medical Legal Partnerships: A Tool to Help Address the Social Determinants of Health

Bioethics for Breakfast Seminars in Medicine, Law and Society

Megan Hoberg and Pamela Hoekwater of Legal Aid of Western Michigan presented at the December 1st Bioethics for Breakfast session, offering their insight and expertise on the topic “Medical Legal Partnerships: A Tool to Help Address the Social Determinants of Health.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman.

The session provided an overview of medical legal partnerships (MLPs) and their impact, discussing the Legal Aid of Western Michigan (LAWM) partnership with Cherry Health—Michigan’s largest Federally Qualified Health Center that operates in six counties. Speakers Hoberg and Hoekwater defined a medical legal partnership as “an integration of lawyers into the health care setting to help clinicians, case managers, and social workers address structural problems at the root of so many health inequities.” MLPs are increasing in popularity across the U.S. and can result in patient success stories, provider satisfaction, and increased recognition and reputation from organizations in the community.

They explained that a big part of MLPs involves screening for issues that might not have an obvious legal component to them. They shared four legal aid practices that relate directly to different social determinants of health: family law, housing, public benefits, and individual rights. One component of an MLP is training the health organization’s work force to help identify potential legal needs in the patient setting.

A memorandum of understanding (MOU) between the relevant stakeholders is generally a starting point to form MLPs. Hoberg and Hoekwater shared that there are a variety of ways that MLPs are funded, including AmeriCorps/Equal Justice Works, private donors, law firms, bar associations, health organizations, and foundations. They shared the evolution of their partnership with Cherry Health, which started with a pilot program and now includes a full-time on-site attorney and community health worker. The MLP currently focuses on maternal infant health and the senior population. The MLP operates as a multi-step process that begins with a referral to the MLP team through the electronic health record which leads to a meeting between the patient and attorney.

Hoberg and Hoekwater also shared challenges associated with MLPs, such as stability of funding, balancing legal and medical ethics, systems integration, and internal communication. Challenges aside, they shared both quantitative and qualitative data that supports the positive impact of MLPs. One example of a specific impact is patients reporting improved mental health and lower levels of stress and anxiety.

It was clear during the question and answer potion that attendees were interested in learning more about how they can pursue forming MLPs at their organizations, and how they can help their patients receive the legal support they need.

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About the speakers

Megan Hoberg is a Staff Attorney with Legal Aid of Western Michigan (LAWM). Previously, she worked as the Medical Legal Partnership Attorney, for the MLP LAWM maintains with Cherry Health. Megan’s perspective sheds light on how MLPs operate on a daily basis and the impact they produce for patient/client communities. Megan was drawn to MLPs during her time at Wayne State University Law School, when she served as a student attorney for The Legal Advocacy for People with Cancer Clinic and earned the 2020 Outstanding Clinical Student Team Award from the Clinical Legal Education Association (CLEA). Starting her career in healthcare and bioethics, working with MLPs and poverty law allows her to use her legal training to advance public health goals in an interdisciplinary setting. She is a member of the following organizations: State Bar of Michigan Professional Ethics Committee, Women Lawyers Association of Michigan, and American Society for Bioethics and Humanities.

Pamela Hoekwater serves as the Executive Director for Legal Aid of Western Michigan (LAWM). She has over 20 years’ experience in poverty law work since starting her legal career as a Staff Attorney in 2001 and has developed innovative partnerships with local agencies to integrate legal services in the community, including the YWCA, Goodwill Industries, and Hope Network. Having helped launch LAWM’s first medical legal partnership (MLP) in 2017, Pam holds a unique perspective and expertise as to the challenges of maintaining and advancing MLPs. Notably, she contributed to the formation of the Medical Legal Partnership with Cherry Health, which has been fully funded and staffed since 2019. Pam strives to advance social justice and equity through her participation/leadership in the following organizations: Resource Committee for Michigan Justice For All Commission, State Bar of Michigan Diversity and Inclusion Advisory Committee, Michigan State Planning Body, and Legal Services Association of Michigan.

By Liz McDaniel

Bioethics for Breakfast: Demystifying End-of-Life Care

Bioethics for Breakfast Seminars in Medicine, Law and Society

Leonard M. Fleck, PhD, and Karen Smith, LMSW, PhD, HEC-C, presented at the October 13 Bioethics for Breakfast session, offering their insight and expertise on the topic “Demystifying End-of-Life Care.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman. The presentation portion of the session was recorded and is available to watch on our website.

The State of Michigan has recently approved the MI POST (Michigan Physician Order for Scope of Treatment), which allows a patient and physician to have in place directions (orders) on care to go between levels of treatment. Such orders typically specify the kind of care a terminally ill patient would want or refuse in an emergency situation outside a hospital setting. Such orders are agreed to by a competent patient or their representative and the attending physician. A POST document is often part of a larger advance care planning document.

Most patients do not have an advance directive or a POST. What happens when that patient is actively dying and the attending physician believes a Do Not Attempt Resuscitation order (DNAR) is in the best interest of that patient? Should that decision by the physician require the written consent of the patient’s family for that DNAR order? And what are the consequences for the patient if the family cannot reach agreement? If you were that patient, what would you regard as the most reasonable course of action? How would you ensure your wishes are followed?

Presenters Fleck and Smith gave some background on what it means to have a natural death and a managed death, noting that the majority of Americans today die a managed death. Smith explained that durable power of attorney and MI POST are the two state-authorized methods for directing end-of-life wishes. Fleck asked attendees to consider the following questions: Are the policies and practices in place regarding terminally ill incapacitated patients good enough? Are they the best we can do? What might we do better? What do we see as the main deficiencies in current policy and practice?

The presentation also explored how policy can protect patients and prevent suffering at the end of life and presented multiple case examples regarding terminal care in the ICU. Discussion during the Q&A portion focused on family disagreements in the ICU, the value of healthcare literacy and common misconceptions that stem from popular culture, and what happens when the court system is involved with end-of-life decisions.

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About the speakers

Leonard M. Fleck, PhD, is a Professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University. Fleck’s interests focus on medical ethics, health care policy, priority-setting and rationing, and reproductive decision-making. He explores the role of community dialogue (rational democratic deliberation) in addressing controversial issues of ethics and public policy related to emerging genetic technologies. More recently, he has completed a book-length manuscript that addresses a number of ethical and policy issues related to precision medicine, primarily in a cancer treatment context. He also completed another book that addresses several contemporary issues related to bioethics and religion from a Rawlsian public reason perspective.

Karen Smith, LMSW, PhD, HEC-C, has been a member of hospital ethics committees for over 20 years. She is currently the Director of Ethics Integration for Henry Ford Health, a six-hospital system in metro Detroit. Smith publishes on issues related to clinical ethics the hospital setting. She specializes in death and dying issues and often works to educate the public on Advance Directive issues. She has been on the National Board for the Funeral Consumers Alliance which is a non-profit organization dedicated to providing the public education and advocacy related to after death needs.

Addressing the complex problems of health care justice generated by precision medicine

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The 2022-2023 Bioethics Public Seminar Series begins next month with a webinar from Center Professor Leonard M. Fleck, PhD, on “Precision Medicine and Distributive Justice: Wicked Problems for Democratic Deliberation.” This virtual event is free to attend and open to all individuals.

Wednesday, November 16, 2022
1:30-2:30 PM EST (UTC−05:00)
Zoom webinar registration: bit.ly/bioethics-fleck

Metastatic cancer and costly precision medicines generate extremely complex problems of health care justice. Targeted cancer therapies yield only very marginal gains in life expectancy for most patients at very great cost, thereby threatening the just allocation of limited health care resources. Philosophic theories of justice cannot address adequately the “wicked” ethical problems associated with these targeted therapies. Following Rawls, Fleck argues for a political conception of health care justice, and a fair and inclusive process of democratic deliberation governed by public reason. The virtue of democratic deliberation is that citizens can fashion autonomously and publicly shared understandings to fairly address the complex problems of health care justice generated by precision medicine. “Wicked” problems can metastasize if rationing decisions are made invisibly. A fair and inclusive process of democratic deliberation can make these “wicked” problems visible, and subject, to fair public reason constraints. What constrained choices do you believe you would endorse with your fellow citizens as being “just enough”?

Leonard M. FLeck

Leonard M. Fleck, PhD, is a professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University. Dr. Fleck’s interests focus on medical ethics, health care policy, priority-setting and rationing, and reproductive decision-making. He explores the role of community dialogue (rational democratic deliberation) in addressing controversial issues of ethics and public policy related to emerging genetic technologies. More recently, he has completed a book-length manuscript that addresses a number of ethical and policy issues related to precision medicine, primarily in a cancer treatment context. He also completed another book that addresses several contemporary issues related to bioethics and religion from a Rawlsian public reason perspective.

Can’t make it? All webinars are recorded and available in our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our email list.

Bioethics for Breakfast: Aducanumab, Alzheimer’s: Having That Conversation

Bioethics for Breakfast Seminars in Medicine, Law and Society

Leonard M. Fleck, PhD, and Irving E. Vega, PhD, presented at the March 24 Bioethics for Breakfast session, offering perspectives and insight on the topic “Aducanumab, Alzheimer’s: Having That Conversation.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman. This session was the second of a two-part series on the theme “Paradoxes of Aging: Living Longer and Feeling Worse.” The presentation portion of the session was recorded and is available to watch on our website.

Aducanumab, a drug designed to treat Alzheimer’s disease, has been the focus of intense medical, scientific, social, and ethical controversy. The FDA Advisory Commission voted almost unanimously not to approve the drug. The research trials failed to show that aducanumab offered significant clinical benefit to patients in the early stages of Alzheimer’s, and notably the enrollment of Black and Latino patients was disproportionately low. It came as a surprise that the FDA itself ultimately gave its approval to the drug, which costs $28,000 per year and is administered monthly through infusion in a hospital setting.

Fleck provided background on Aducanumab and the clinical trials carried out by the developer, Biogen, that led them to seek FDA approval. He defined the different stages of Alzheimer’s disease, noting that over six million Americans currently have been diagnosed with some degree of Alzheimer’s. Fleck also outlined the FDA’s approval process, including their vote to grant emergency use authorization with the expectation of phase four clinical trials completed within nine years. He also pointed out that Aducanumab’s effects are limited to mild cognitive impairment and mild Alzheimer’s, with no benefit in more advanced stages. However, there have been no other Alzheimer’s disease drugs in the past twenty years with promise of significant benefit.

Bringing up concerns of social justice, Fleck discussed the cost Aducanumab within U.S. health spending, particularly within the Medicare program. It is estimated that 85% of the estimated 3.1 million Americans with a mild Alzheimer’s diagnosis are Medicare eligible, meaning the annual cost to Medicare would be in the hundreds of billions of dollars for the drug and its associated costs. Fleck asked attendees to consider whether this spending would be a just use of limited health care resources.

Vega offered attendees questions to consider: is there sufficient evidence about the safety of the drug? Is there sufficient evidence about the effectiveness of the drug? Does the treatment address health disparities in Alzheimer’s disease? He discussed the biology of Alzheimer’s disease, outlining its effect on the brain, and pointing out what is still unknown about the disease. After defining scientific rigor, Vega walked attendees through concerns about the Aducanumab clinical trials, such as participant age and the inadequate representation of Black, Hispanic, American Indian or Alaska Native, and Native Hawaiian or Pacific Islander populations.

Focusing on these disparities, Vega shared facts pertaining to Black Americans being twice as likely to have Alzheimer’s compared to non-Latino white Americans, and Latino Americans being 1.5 times as likely, compared to non-Latino white Americans. Disparities exist with increased likelihood of comorbidities like stroke, heart disease, obesity, and diabetes. Given these facts, Vega shared concern for observed adverse side effects of Aducanumab, particularly brain swelling, microbleeds, and slow brain bleeding.

Questions from attendees generation discussion about advocacy work, insurance companies, and direct and indirect costs of Alzheimer’s disease. Fleck and Vega noted the cost of care for an individual with Alzheimer’s, in a long term care facility, is typically in the $80,000-$100,000 range per year. Indirect costs include the lost wages of caregivers, and stress experienced by loved ones. Vega also importantly pointed out the context of the approval of Aducanumab: a global pandemic, COVID-19 vaccine development, and the subsequent spread of misinformation. Attendees also participated in polling questions with hypothetical situations, asking whether they agreed or disagreed with the scenarios. Responses were varied, highlighting the complexities of the topic.

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About the speakers

Leonard M. Fleck, PhD, is a professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University. Fleck’s interests focus on medical ethics, health care policy, priority-setting and rationing, and reproductive decision-making. He explores the role of community dialogue (rational democratic deliberation) in addressing controversial issues of ethics and public policy related to emerging genetic technologies. More recently, he has been working on a book-length manuscript that addresses a number of ethical and policy issues related to precision medicine, primarily in a cancer treatment context.

Irving E. Vega, PhD, obtained his undergraduate degree in Biology from the University of Puerto Rico-Mayaguez Campus. He continued his research training in the Department of Cell Biology and Neuroscience at the Graduate School of New Brunswick, Rutgers University, earning his PhD. Vega completed a postdoctoral fellowship in the Neuroscience Department at Mayo Clinic Jacksonville, where he developed his research career focusing on the pathobiology of Alzheimer’s disease. Vega joined the faculty as an associate professor in the Department of Translational Neuroscience at the Michigan State University College of Human Medicine campus in Grand Rapids, MI in 2014. His research focuses on molecular and biochemical mechanisms that modulate the accumulation of pathological tau proteins in Alzheimer’s disease and related dementias. Vega is also working on ethnic disparities and the influence of ethnoracial factors on blood biomarkers in Alzheimer’s disease.

Bioethics for Breakfast: Social Determinants of Elders’ Health

Bioethics for Breakfast: Seminars in Medicine, Law and Society

Anne K. Hughes, PhD, MSW, and Dawn Opel, JD, PhD, presented at the December 2 Bioethics for Breakfast session, offering perspectives and insight on the topic “Social Determinants of Elders’ Health.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman. This session was the first of a two-part series on the theme “Paradoxes of Aging: Living Longer and Feeling Worse.” The presentation portion of the session was recorded and is available to watch on our website.

Elders in the U.S. contend with chronic illness, disability, mental health disorders, and a host of other co-morbid conditions. The COVID-19 pandemic has illuminated the complex web of social, medical, and economic challenges faced by the elderly.

Anne K. Hughes, PhD, MSW, highlighted common concerns about aging and explained how those concerns affect LGBTQ+ older adults: cognitive and/or physical decline, isolation, financial/legal, living situations, and meaning making/legacy. Hughes shared the importance of health professionals asking questions rather than making assumptions when working with sexual and gender minority older adults. She also noted research showing health disparities at greater levels when compared to heterosexual older adults, even noting that much of the research data currently available is not inclusive of bisexual, transgender, or gender non-conforming older adults.

Dawn Opel, JD, PhD, presented on older adults and food insecurity in America. She addressed the invisibility of older adults experiencing hunger in America, lessons from the COVID-19 pandemic, programs and services available for older adults in Michigan, and the future of food security for older adults. Regarding food insecurity, many older adults are living alone, and they may use trade-offs such as skipping their grocery trip to instead pay the rent or utility bill. The pandemic also made visible the reliance on unpaid caregiving and volunteerism for access to food. Sharing data that projects more than 20 percent of the U.S. population will be over the age of 65 by 2030, Opel asked attendees to consider the actions needed now to invest in infrastructure for the future.

Discussion during the Q&A portion included the concept of aging in place, with multiple attendees sharing personal anecdotes about older adults in their lives who wish to remain independent in their homes. Broadly, both speakers touched on the importance of having conversations early on with older adults in our lives, in order to be as prepared as possible before there is a crisis situation. Discussion also touched on the technological divide, having conversations with primary care physicians, and potential policy improvements that could improve the burden on those in paid and unpaid caregiving roles.

About the speakers

Anne K. Hughes, PhD, MSW, is Director and Associate Professor in the School of Social Work at Michigan State University. She was previously the director of the PhD program. She is co-founder of the MSU Consortium for Sexual and Gender Minority Health Across the Lifespan, an interdisciplinary research consortium established within the College of Social Science in 2019. Prior to coming to MSU Dr. Hughes had 14 years of clinical practice experience. Dr. Hughes’ research focuses primarily on older adults with chronic conditions and improving healthcare services for underserved older adults, particularly LGBTQ+ older adults. Dr. Hughes has received external funding for her research from: Patient-Centered Outcomes Research Institute (PCORI), the John A. Hartford Foundation, and the National Institutes of Health. She is a Hartford Faculty Scholar in Geriatric Social Work and a Fellow in the Gerontological Society of America.

Dawn Opel, JD, PhD, is Director of Research & Strategic Initiatives and General Counsel of the Food Bank Council of Michigan, where she oversees research, data, legal, and compliance functions of the organization. A lawyer and researcher, her career has included positions in academic, nonprofit, and government sectors, and broadly, she works to build strategic partnerships for social innovation. Dr. Opel’s particular focus is developing capacity in Michigan for food-as-medicine interventions in the clinical setting, and she is currently involved in the implementation and sustainability of fresh food pharmacies for chronic disease self-management in federally-qualified health centers (FQHCs). She holds a PhD from Arizona State University and a JD from the University of North Carolina School of Law. Dr. Opel is adjunct assistant faculty at Michigan State University in the College of Arts & Letters.

Upcoming webinar on the relationship between the criminal legal system, structural racism, and health

Monday, September 13, 2021; 1:00-2:30 PM ET
Zoom registration: bit.ly/bsj-hfhs-sept13

Trauma, Community Health and the Criminal Legal System

Why should we care about the effects of incarceration and policing on communities and their health? This virtual panel discussion and audience Q&A on the relationship between the criminal legal system, structural racism, and health will also explore terminology—including “mass incarceration”—and explore different ways of thinking about trauma.

This webinar is co-presented by the Michigan State University Center for Bioethics and Social Justice and the Henry Ford Health System Health Disparities Research Collaborative. Panelists include Jennifer Cobbina, PhD, and Christina DeJong, PhD, from the Michigan State University School of Criminal Justice, Carmen McIntyre Leon, MD, from Wayne State University School of Medicine, and Center for Bioethics and Social Justice Director Sean A. Valles, PhD. Henry Ford Health System Health Disparities Research Collaborative Director Christine Joseph, PhD, will moderate the session.

This webinar is free to attend and open to all individuals. A recording will be available following the event.

About the panelists

Jennifer Cobbina, PhD

Jennifer Cobbina is an Associate Professor in the School of Criminal Justice at Michigan State University. She received her PhD in criminal justice at the University of Missouri-St. Louis in 2009. Her primary research focuses on community responses to police violence and the strategies that communities employ to challenge police expansion and end state sanctioned violence. Her research also examines the intersection of race, gender, and how neighborhood contexts shapes crime and criminal justice practices. Finally, her work focuses on corrections, prisoner reentry and the understanding of recidivism and desistance from crime. She is the author of Hands Up, Don’t Shoot: Why the Protests in Ferguson and Baltimore Matter and How They Changed America.

Christina DeJong, PhD

Christina DeJong is an Associate Professor in the School of Criminal Justice at Michigan State University. Her research interests focus on gender, sexuality, crime, and justice. Dr. DeJong’s current work is focused on Queer Criminology, specifically the homicide of transgender people in the United States and how sexuality shapes juvenile offending. She is also currently studying bullying and misconduct in academe. Dr. DeJong received her PhD in Criminal Justice and Criminology from University of Maryland. She is an associated faculty member with the MSU Center for Gender in Global Context.

Carmen McIntyre Leon, MD

Carmen McIntyre Leon completed undergraduate studies at the University of Michigan, attended Wayne State University for medical school, and the Medical College of Pennsylvania (now Drexel) for psychiatry residency and NIMH research fellowship. She worked as medical director for partial programs, inpatient units, research units, and SUD/Methadone programs before returning to Michigan, eventually co-founding Community Network Services, an adult community mental health provider in Oakland County. After a brief stint in New Zealand she returned to Detroit to help lead the newly created Detroit Wayne Mental Health Authority as the Chief Medical Director. She is now the Associate Chair for Community Affairs and Director of Public Psychiatry Fellowship with the Wayne State University School of Medicine Department of Psychiatry and Behavioral Neuroscience; and Chief Medical Officer for the Michigan Department of Corrections.

Sean A. Valles, PhD

Sean A. Valles is director and associate professor in the Center for Bioethics and Social Justice in the Michigan State University College of Human Medicine. Dr. Valles is a philosopher of health specializing in the ethical and evidentiary complexities of how social contexts combine to create patterns of inequitable health disparities. His work includes studying the challenges of responsibly using race and ethnicity concepts in monitoring health disparities, scrutinizing the rhetoric of the COVID-19 pandemic as an ‘unprecedented’ problem that could not be prepared for, and examining how biomedicine meshes with public health and population health. Dr. Valles received his PhD in History and Philosophy of Science from Indiana University Bloomington.

Christine Joseph is a Senior Epidemiologist in the Department of Public Health Sciences at Henry Ford Health System. Her research interests include racial/ethnic health disparities, adolescent health, asthma and allergic disease, adherence, and school-based health management. She has experience in the design and implementation of community-based and pragmatic clinical trials. Dr. Joseph has worked on a variety of studies focusing on vulnerable populations and social determinants of health, and has publications in the areas of asthma, food allergy, sleep, LGBTQ health, and health literacy.

Bioethics for Breakfast: Caring with and for undocumented physicians and patients

Bioethics for Breakfast Seminars in Medicine, Law and Society

Mark G. Kuczewski, PhD, of the Loyola University Chicago Stritch School of Medicine presented at the April 22 Bioethics for Breakfast session, offering perspectives and insight on the topic “Caring with and for undocumented physicians and patients.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman.

The session addressed the contributions of undocumented immigrants to our communities in the United States, including those of DACA (Deferred Action for Childhood Arrivals) physicians, to our healthcare system; the limits that exclusionary practices place on the contributions of undocumented immigrants to our healthcare system; and approaches to facilitating better care of undocumented immigrants in the healthcare system.

Dr. Kuczewski shared facts about undocumented immigrants in the U.S.: they number approximately 10-12 million, approximately two-thirds have lived in the U.S. for more than 10 years, they cannot buy a full-priced policy on an ACA exchange, they commit crimes at lower rates than U.S. citizens, an increasing percentage are of Asian origin, and there are fewer in the U.S. now than in 2010. He pointed out that excluding these individuals from obtaining health insurance through the Affordable Care Act ends up harming the overall pool of people in the insurance marketplace.

Dr. Kuczewski also explained how U.S. immigration policies have changed since the Clinton administration and now those policies have created barriers to entering the U.S. lawfully and with authorization, with regard to application rules and the quota system.

“This is a people issue,” said Dr. Kuczewski, adding that the stable population of 10-12 million undocumented immigrants in the U.S. have healthcare needs, and need to be able to seek care. Using the example of someone in need of kidney dialysis, he pointed out that the usual route of getting Medicare coverage is not an option because federal benefits are not available to undocumented immigrants. Dr. Kuczewski highlighted the importance of hospitals and clinics caring for undocumented patients and advocating for them, in order to foster trust over fear, and in turn help to avoid negative impacts on public health.

Finally, Dr. Kuczewski discussed the challenges for DACA recipients who matriculate through medical school while being ineligible for federal student loans. The discussion portion of the session explored the importance of educating people, including politicians, on revisions to the ACA, and avenues for advocacy work for schools and universities, students, medical professionals, and instructors. Related resources are linked below.

Related Resources

About the Speaker

Mark G. Kuczewski, PhD
Mark G. Kuczewski, PhD, is the Fr. Michael I. English, S.J., Professor of Medical Ethics and the director of the Neiswanger Institute for Bioethics at the Loyola University Chicago Stritch School of Medicine. Mark is a past president of the American Society for Bioethics and Humanities (ASBH) and a Fellow of the Hastings Center. He has been engaged in bedside clinical ethics issues for more than 25 years. For the last decade, he has been an articulate spokesperson for the just and equitable treatment of immigrant patients. He created the Sanctuary Doctor website with Drs. Johana Mejias-Beck and Amy Blair to assist clinicians in supporting immigrant patients. He led the effort to make the Stritch School of Medicine the first medical school in the nation to openly welcome applicants who are DACA recipients.

About Bioethics for Breakfast:
In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Bioethics and Social Justice to partner on a bioethics seminar series. The Center 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.

Bioethics for Breakfast: Mental Health Care Access: Making the Dollars and “Common Sense” Case for Parity

Bioethics for Breakfast Seminars in Medicine, Law and Society

Malkia Newman, Anti-Stigma Team Supervisor at CNS Healthcare, and Dr. Debra A. Pinals of MDHHS and the University of Michigan presented at the Feb. 25 Bioethics for Breakfast session, offering perspectives and insight on the topic “Mental Health Care Access: Making the Dollars and “Common Sense” Case for Parity.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman.

People with mental health disabilities face disproportionately high rates of poverty, housing and employment discrimination, and criminalization. The upheaval caused by the coronavirus outbreak has exacerbated these disparities for those disabled prior to the crisis, while exposing more people to trauma, loss, and uncertainty. Considering mental health care from a justice and equity perspective, this session examined the following: 1) What social and ethical challenges are embedded in the current mental health epidemic? 2) How might such challenges be effectively addressed? 3) What community-based models can improve access? 4) What are the cost benefits of equitable treatment vs. cost of untreated mental healthcare in the U.S.?

Malkia Newman addressed the first question above on the social and ethical challenges embedded in the current mental health epidemic. Through sharing her personal life story, Ms. Newman focused on trauma, stigma, and disparities in behavioral healthcare. Ms. Newman defined types of trauma, focusing on inter-generational trauma. She noted that racism and social inequities are now regarded by many as a health crisis, especially in light of the COVID-19 pandemic. Stigma that individuals face can include many layers, and that stigma can exacerbate mental health and substance use disorders. With regard to mental health disparities, she shared that access to mental health care is only one piece—quality treatment, addressing the shortage of qualified providers, and the need for equitable funding of treatment for all individuals is also crucial. Many in the U.S. are facing financial insecurity, which can also exacerbate mental illness and be a barrier to accessing treatment. Bringing forth the idea of resilience, Ms. Newman ended by sharing her hope for the future, that “resilience can spring forth, and resilience can be taught.”

Dr. Debra A. Pinals provided a physician and policymaker perspective, first addressing the question: why is mental health relegated to second tier status in healthcare financing? There is a long history of viewing mental illness, including substance use disorders, as not being “real” illness—blame, stigma, and stereotypes still play a part in this attitude. Stigma “allows the discrimination of someone based on a label.” However, it is very important to understand that these are illnesses that have causes and treatments. COVID-19 may be putting more focus on mental health, and that may be one positive thing to come from the pandemic. What community-based models can improve access? Dr. Pinals discussed the problems with the current crisis system and the involvement of law enforcement when responding to a crisis, and then put forth a new model that would involve a behavioral health response, specially-trained law enforcement as a backup, and many other pieces related to community services and supports. Referencing her paper on crisis services, Dr. Pinals shared that improving access has to be accessible, interconnected, effective, and just. Dr. Pinals also discussed building out Certified Community Behavioral Health Clinics (CCBHCs) in Michigan, and the siloed nature of current services. Dr. Pinals emphasized the need to understand the existing disparities in mental health services, also discussing the prison system, the opioid epidemic, and child welfare impacts.

During the discussion portion, both speakers discussed the need to make space for people’s stories, particularly within the context of policy work. Ms. Newman shared the importance of including both behavioral health professionals and individuals with mental illness during the planning process for policies and programs, such that their input is actively included. Further discussion touched on teletherapy access and programs for youth and families.

Related Resources

About the Speakers

Malkia Newman
Malkia Newman is Anti-Stigma Team Supervisor at CNS Healthcare. Behavioral health conditions are common in Malkia’s family. Suicidal, unemployed, and homeless, Malkia accessed care at CNS Healthcare in 2004. Once stabilized, she was able to pursue a job with the CNS Healthcare Anti-Stigma Program in 2005. The Peer-Led program challenges stigma and provides community education on a number of different behavioral health topics. Using poetry, singing and other creative expressions, Malkia shows that “hope and recovery is possible.” The program has reached over 100,000 people in Detroit, Lansing, Marquette, MI; Washington, D.C., New York City, Houston, San Antonio, Las Vegas, Chicago, Phoenix, Honolulu, Hawaii, and Nova Scotia, Canada.

Debra A. Pinals, MD
Debra A. Pinals, MD, is the Medical Director of Behavioral Health and Forensic Programs for the Michigan Department of Health and Human Services, Director of the Program in Psychiatry, Law, & Ethics, Clinical Professor of Psychiatry at the University of Michigan Medical School, and Clinical Adjunct Professor at the University of Michigan Law School. Dr. Pinals’ roles have included serving as the Assistant Commissioner of Forensic Services as well as the Interim State Medical Director for the Massachusetts Department of Mental Health. She has worked in outpatient and inpatient settings, forensic and correctional facilities, emergency rooms and court clinics, has received public service awards, and has been an expert witness in many cases. She is Board Certified in Psychiatry, Forensic Psychiatry, and Addiction Medicine.

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.