The Hastings Center has published a special report on “A Critical Moment in Bioethics: Reckoning with Anti‐Black Racism through Intergenerational Dialogue.” As stated in a news release announcing the report, it “calls on the field of bioethics to take the lead in efforts to remedy racial injustice and health inequities in the United States.”
The special report includes contributions from faculty in the Center for Bioethics and Social Justice. The essay “Colonial Geographies, Black Geographies, and Bioethics” comes from Jennifer McCurdy, PhD, assistant professor. Additionally, “On the Shoulders of Giants: A Reckoning with Social Justice” was co-authored by Libby Bogdan-Lovis, specialist emerita, Karen Kelly-Blake, PhD, associate director of academic programming, and Wendy Jiang, MPH (MD candidate at University of Alabama at Birmingham).
The editors of this special report are Faith E. Fletcher, PhD, MA; Keisha S. Ray, PhD; Virginia A. Brown, PhD, MA; and Patrick T. Smith, PhD, MDiv, MA. Fletcher, Senior Advisor at The Hastings Center and recent40 Under 40 Leaders in Health Award Winner, is an alumna of the Center for Bioethics and Social Justice’s former MA program in Bioethics, Humanities, and Society.
Center Assistant Director and Associate Professor Karen Kelly-Blake, PhD, recently presented at the 116th American Sociological Association Virtual Annual Meeting, held August 6-10, 2021. Dr. Kelly-Blake was an invited panelist for the session “Racism: A Pre-existing Health Condition.” Her presentation was entitled “A Question of Justice: The Covert Costs of Racial/Ethnic Concordance in the Medical Workforce.”
Over the past century U.S. medical workforce demographics have shifted. Moving away from a white male dominated profession, there has been a “widening capacity” trend toward increasing gender, ethnic, racial, and linguistic representation. Commonly, that push is linked to notions of desirable doctor/patient identity matching, described here as “concordance.” Notably that trend is accompanied by rhetoric covertly shaping the professional lives of Black, Indigenous, and Latino physicians underrepresented in medicine (URiM). Improving patient trust, access and health outcomes are frequently mentioned benefits figuring into such parity rhetoric. Indeed, URiM physicians provide a substantial proportion of medical care to the underserved. Quite possibly such workforce patterns reflect focused altruism to serve “one’s own.” Paradoxically, policy initiatives that influence URiM’s futures in the medical workforce may well carry hidden unanticipated consequences.
Dr. Kelly-Blake reported on the findings of a 2000-2015 scoping literature review considering the nature of medical workforce policy strategies. She posed the question of whether those strategies might not unevenly affect URiM physicians, selectively placing service expectations not similarly placed on their White counterparts. Findings suggest that selectively placing service expectations not similarly placed on their White counterparts along with unexamined assumptions of racial/ethnic concordance between patient and physician may place an undue burden on URiMs disproportionately tasked with ameliorating persistent inequities in our health care system.
In this information age, the ways patients gather information about their health and how they process this information to make decisions, within the constraints of their particular social context, is of utmost importance. Dr. Kelly-Blake explained the value and ethical aspects of shared decision-making to enhance nutrition adherence goals, help practitioners understand the constraints of the dietitian and client dyad mismatch, and address this mismatch with the goal of advancing professional practice.
This month the Center was proud to officially announce its new name: Center for Bioethics and Social Justice. This name change reflects an updated mission with a focus on social justice-oriented bioethics. This episode features a conversation between Director Sean Valles, PhD, and Assistant Director Karen Kelly-Blake, PhD. Together they discuss moving forward in the bioethics space, what engaging in service to the people means to them, and the important work to be done to a create a healthier and more socially just world. They also explore questions related to the practical application of bioethics, and the challenge of preparing medical students for clinical practice in an inequitable world.
This episode was produced and edited by Liz McDaniel in the Center for Bioethics and Social Justice. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.
About: No Easy Answers in Bioethics is a podcast series from the Center for Bioethics and Social Justice in the Michigan State University College of Human Medicine. Center faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
The MSU Center for Ethics and Humanities in the Life Sciences is proud to announce its new name: Center for Bioethics and Social Justice. This name change as of April 1 reflects an updated mission with a focus on social justice-oriented bioethics. The Center has a vision of a health system that is compassionate, respectful, and responsive to people’s needs, so that equity, inclusion, and social justice are available to all.
“Without an orientation, bioethics has no built-in real-world goals; it is merely a field of study. Doing social justice-oriented bioethics means we have a goal—advancing social justice in the real world with meaningful applications—as the north star for our journey as an institution,” said Center Director Sean A. Valles, PhD.
The updated name and mission follow the appointment of Valles as director earlier this year, along with the promotion of Karen Kelly-Blake, PhD, to assistant director.
“One key piece of the new name and mission is a rethinking and a recommitting of our identity,” said Valles. “The Center aims to be a hub for collaborations and conversations around the relationship between social justice and health. To do that, we will actively seek to engage with our college and university colleagues, local communities, and organizations in order to learn their concerns about the ways our society makes it hard to live a healthy life, and to begin trying to help.”
The Center’s mission is to educate health professionals with skills, knowledge, and attitudes necessary to contribute to a world in which health practices are equitable, inclusive, and bolstered by conditions of social justice; to research the nature of bioethics and enhance its applications to the pursuit of equitable, inclusive, and just healthy societies; and to engage researchers, clinicians, policymakers, and communities around shared interests in the attainment of a healthier and more just world.
“Building bridges among MSU experts and outward to communities is of value to everyone involved,” added Valles.
The Center began in 1977 with the formation of the Medical Humanities Program. In 1988, the program became the Center for Ethics and Humanities in the Life Sciences. Faculty in the Center are committed to teaching medical students in the College of Human Medicine and developing social context of clinical decisions content for the Shared Discovery Curriculum. Center faculty are also committed to research, scholarship, and public outreach and education—all working toward the goal of creating a more just world.
Visit the Center’s website to learn more about its faculty and outreach activities, such as public seminars, podcast episodes, and monthly blog posts that explore timely bioethics topics.
The Center for Ethics and Humanities in the Life Sciences is pleased to announce the appointment of Dr. Sean A. Valles as Center Director. Additionally, associate professor Dr. Karen Kelly-Blake has been promoted to Assistant Director.
Dr. Sean A. 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. He was most recently an associate professor in Lyman Briggs College and the Department of Philosophy at Michigan State University. He served as Director of Graduate Programs in the Department of Philosophy, and Director of the interdisciplinary Science and Society at State program. His research spans a range of topics in the philosophy of population health, from the use of evidence in medical genetics to the roles played by race concepts in epidemiology.
Dr. Valles is author of the 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era. He is also co-editor of the Oxford University Press book series “Bioethics for Social Justice.” Dr. Valles received his PhD in History and Philosophy of Science from Indiana University Bloomington.
Dr. Karen Kelly-Blake is an associate professor in the Center for Ethics and the Department of Medicine. She has been with the Center since 2009. Her research interests include health services research, shared decision-making, decision aid development and implementation, clinical communication skills and training, mHealth, racism and morbidity and mortality, bioethics, medical workforce policy, and men’s health.
Dr. Kelly-Blake is a co-investigator on the NIH-funded project “Improving Diabetic Patients’ Adherence to Treatment and Prevention of Cardiovascular Disease.” She is also co-chair of the College of Human Medicine Admissions Committee. Dr. Kelly-Blake received her PhD in Medical Anthropology from Michigan State University.
“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” -Audre Lorde
Much has been written about finding meaning in illness. Others have written about finding meaning in caregiving. But taking care of someone else’s s!#t has its own intrinsic meaning, and for much of the time, it’s not all good.
For some, doing this work may allow them redemption—to repent for past wrongs, or it might allow them to display their humanity in ways they have not done before. Some may experience joy with self-sacrifice. I wish you well. Amid the crucible, women are performing all sorts of gendered work, and especially gendered care work. What do I mean by that? Women perform the majority of caregiving work to family and friends, i.e. women are the ones taking care of someone else’s s!#t. This work is unpaid, labor intensive, and career limiting if not career destroying.
Care work offers few rewards, but it is necessary, and it is often silently expected of women. Unpaid labor that diminishes or denies opportunity for growth and sustenance is unfair, unjust, unsustainable, and wrong. Caregiver resilience may be a thing but is most likely a statement of privilege. Women do the work to the detriment of self-care, careers, outside friendships and interests, and other family relationships. Un- and under-paid gendered care work is a real and present danger to the overall wellbeing of women. As a society, we cannot keep telling women that this kind of gender discrimination in care work, especially for their family, is okay. It is not okay. Women must acknowledge all the ugliness that comes with taking care of someone else’s s!#t—the resentment, anger, frustration, disappointment, loss, fear, disgust, exhaustion, defeat.
So, who will do this work?
Dare I say, salaried home health assistants with all the benefits afforded fully employed persons—health insurance, retirement, educational assistance, PTO, etc. BUT then, who will do that work? Women, and more specifically women of color and immigrants. Whether women do it as unpaid family labor or as salaried health aides, women do care work. It may be reasonable to assume that the salaried worker may be better able to handle the emotional demands of the work. The unpaid family care worker is burdened with history, regrets, slights, insults, lies, disappointments, unforgiven and unforgivable acts, whereas the salaried care worker is not burdened with that baggage, and thus, may be a better and perhaps even a more caring caregiver. Absent the burden and weight of historical relationship bonds, women—as daughters, sisters, spouses, and mothers—may be able to find meaning in just being themselves.
Although the inequity of gendered work has always been there, the COVID-19 pandemic has shed revealing light on this inequity, just as it has on racism. Women are performing job duties remotely from home, becoming teachers, chefs, activity directors, housekeeping staff, laundry workers, and of course the calm in the storm, etc. Working the second shift does not go far enough in describing that reality—women hold on average about 100 jobs that are unpaid! These jobs historically have been the purview of women, but gendered work in the home is the cause of much friction in marriages. Moreover, women are balancing care of children with the care of parents, at times both their own and those of their spouse. Those women fortunate enough to retain their jobs and work remotely were immediately immersed in work that was unfamiliar and, in many cases, unwanted—24/7 care and attention to children, spouses, and others. For those caring for the ill, the disabled (mentally, physically, or cognitively), or the aged, or any individual with any range of functional and psychological limitation, the pandemic significantly increased the workload. Many people do this care work because they want to, out of whatever love and obligation they have for the care receiver. For others, there is no one else to do the work and it may feel, and indeed be, life limiting. Engaging in this work during a pandemic is especially challenging.
Oftentimes, a crash course in highly technical aspects of care (flushing ports, inserting feeding tubes, cleaning wounds, managing LVADs, etc.) leaves one completely bewildered. This disjuncture between necessary specialized care exposes the schism in care work that overwhelms and burdens.
Because of shelter-in-place orders, the pandemic has also heightened concerns about domestic violence, child abuse, elder abuse, and alcohol and substance use disorders. We consequently will need to ramp up behavioral health and trauma-informed care services. Sadly, history predicts how unlikely we are to effectively meet this challenge. Essential caregivers unable to work remotely have had to expose themselves and their children to increased risk of disease, because their children had to remain in daycare or in multigenerational spaces with no means to isolate.
Gendered care work can no longer hide under the auspices of family love and selflessness. Caregivers oftentimes die before the care receiver. There is nothing heroic or laudable about a preventable early death. Too much togetherness can breed resentment. There is always something needed, an ask or a want. There is little give in return. Even a sincerely offered “thank you” neither diminishes nor alleviates profound fatigue.
Recognize the gender inequity of care work and the harm such blindness inflicts.
Pave the way for long-term care access, regulation, and insurance.
Pay care workers (both in institutional and home health settings) a salary with PTO, retirement, and benefits (educational and promotion opportunities).
Provide paid family leave for family and friend care workers, so that they can focus on the care work they want to do without worrying about economic self-harm.
Ensure enhanced respite care and family mental health support.
Taking care of someone else’s s!#t is hard, labor-intensive work, both physically and mentally, and it must be recognized as such. We can no longer silently accept the gender discrimination inherent in care work. We all must bear the burden and the weight, and take care of each other’s s!#t.
Disclaimers: The title is gendered caregiving, which, for the purposes of this blog, focuses on the traditional gender binary of women and men doing caregiving. While clearly in the minority, men do provide unpaid care work. I afford no special credit for doing this work because one is a man. It is akin to saying, “my husband is babysitting the kids”—um, no they are doing the hard work of parenting. My goal is to highlight the burden of care work that is performed primarily by women. Women do not get gold stars for work that they have historically been expectedto do.
The author acknowledges her own lifelong role as a caregiver. I do not aim to speak to every person’s experience with doing this work. Instead, I seek to highlight that the continued gender inequity and unpaid labor of care work harms women. If we are to be a just society, it is imperative for us to take care of the caregivers.
Karen Kelly-Blake, PhD, is an Associate Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Medicine in the Michigan State University College of Human Medicine.
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In early March, College of Human Medicine student Brittany Ajegba presented at the second annual Diversity in Medicine Conference at the University of Michigan in Ann Arbor. Ajegba presented a poster titled “Rationales for expanding minority physician representation in the workforce: a scoping review.” The poster presented the work of a multi-institution research team comprised of Karen Kelly-Blake (MSU), Libby Bogdan-Lovis (MSU), Nanibaa’ Garrison (UCLA), Faith Fletcher (University of Alabama at Birmingham), Brittany Ajegba (MSU), Nichole Smith (University of Chicago), and Morgan Brafford (Walden University). The team’s scoping review of the same name was published in the September 2018 issue of Medical Education.
Ajegba shared her experience on attending: “I was so happy I was able to attend and present at the [conference]. While I got to present on our physician-patient racial/ethnic concordance research, it was great to see what researchers from around the country are doing to address underrepresentation in medicine. Being from the area, it was nice to reconnect with future colleagues and to see what work was being done around various topics of diversity in medicine that included but was not limited to: unconscious bias projects, pipeline programs, LGBTQ+ healthcare, and much more.”
The team’s poster presented findings of their scoping review of the 2000-2015 literature on strategies for and approaches to expanding underrepresented minority (URM) representation in medicine, “which reveals a repetitive, amplifying message of URM physician service commitment to vulnerable populations in medically underserved communities. Such message repetition reinforces policies and practices that might limit the full scope of URM practice, research and leadership opportunities in medicine. Cross-nationally, service commitment and patient-physician concordance benefits admittedly respond to recognized societal need, yet there is an associated risk for instrumentally singling out members of URMs to fulfill that need. Additionally, the proceedings of a 2001 US Institute of Medicine symposium warned against creating a deterministic expectation that URM physicians provide care to minority populations.”
Listen to Episode 6 of our podcast series No Easy Answers in Bioethics, featuring Libby Bogdan-Lovis and Dr. Karen Kelly-Blake, to learn more about this ongoing research.
This episode features guests Dr. Karen Kelly-Blake, Associate Professor in the Center for Ethics and Humanities in the Life Sciences, and Dr. Masahito Jimbo, Professor in the Department of Family Medicine at University of Michigan Medical School. Drs. Kelly-Blake and Jimbo discuss their NIH-funded study known by the acronym DATES—Decision Aid to Technologically Enhance Shared Decision Making—which addressed shared decision-making, decision aids, and patient-physician communication regarding colorectal cancer screening. The two researchers provide insight into the study and its results, also reflecting on what the process of shared decision-making means to them in the present day.
This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.
About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
Center for Ethics Assistant Professor Dr. Laura Cabrera and Associate Professor Dr. Karen Kelly-Blake, along with Dr. Christos Sidiropoulos of the Department of Neurology & Ophthalmology, are co-authors of a new article in Brain Sciences. Their article “Perspectives on Deep Brain Stimulation and Its Earlier Use for Parkinson’s Disease: A Qualitative Study of US Patients” appears in a special issue on “Brain Stimulation and Parkinson’s Disease.”
Background: Deep brain stimulation (DBS) is being used earlier than was previously the case in the disease progression in people with Parkinson’s disease (PD). To explore preferences about the timing of DBS, we asked PD patients with DBS whether they would have preferred the implantation procedure to have occurred earlier after diagnosis. Methods: Twenty Michigan-based patients were interviewed about both their experiences with DBS as well as their attitudes regarding the possible earlier use of DBS. We used a structured interview, with both closed and open-ended questions. Interviews were transcribed verbatim and analyzed using a mixed-methods approach. Results: We found that the majority of our participants (72%) had high overall satisfaction with DBS in addressing motor symptoms (mean of 7.5/10) and quality of life (mean of 8.25/10). Participants were mixed about whether they would have undergone DBS earlier than they did, with five participants being unsure and the remaining nearly equally divided between yes and no. Conclusion: Patient attitudes on the early use of DBS were mixed. Our results suggest that while patients were grateful for improvements experienced with DBS, they would not necessarily have endorsed its implementation earlier in their disease progression. Larger studies are needed to further examine our findings.