Tag: healthcare

International Development and Health: Rethinking Global Pessimism About the Future

By Sean A. Valles, Director and Associate Professor, Center for Bioethics and Social Justice, College of Human Medicine, Michigan State University

Pessimism about the future is rising around much of the world. Meanwhile, the social institutions of democracy are experiencing slipping public support. The global COVID-19 pandemic has also drawn attention to the importance and fragility of trust.

Unfortunately, none of this should be considered new. The pandemic arrived more than a decade into a trend of declining trust in social institutions. More recently, news reports of fraud and corruption, such as misuses of pandemic relief funds, can push us to see the world as filled with people undeserving of our trust or care. Such an observation can start to look like a moral justification for our own selfishness: “the system is corrupt so I’m just going to get mine and look out for myself.”

We do not need to resign ourselves to selfishness and isolation.

Group of surgeons wearing blue medical scrubs and face masks.
Image description: Cropped shot of a group of surgeons wearing blue scrubs and face masks performing a medical procedure in an operating room. Image source: PeopleImages/iStock.

Economist Elinor Ostrom won the Nobel Prize for showing how examples from around the globe undercut the pessimistic but widespread view among scholars that the “tragedy of the commons” is practically inevitable—the idea that fishers are doomed to selfishly overfish the waters they share with other fishers, etc. That theory of inevitable selfishness and tragedy is rooted in assumptions of human nature that intuitively resonate with a lot of people, which made Ostrom’s debunking work all the harder. Not coincidentally, Garrett Hardin, the creator of a supremely pessimistic view of humanity, was a vocal racist and nativist who saw his pessimism about cooperation as grounds for treating the less privileged peoples of the world as potential invaders threating to take resources from the metaphorical “lifeboat” occupied by the privileged. Extreme pessimism about the possibility of cooperation and solidarity is toxic.

Extreme pessimism about human nature oversimplifies human behavior. Even overtly bad and apparently selfish behavior by others can be evidence of the possibility of future cooperation. For instance, recent research on academic dishonesty by students has found that cheating and plagiarism are driven in part by a desperate desire to be allowed to continue learning as part of a school’s community.

I see the COVID-19 pandemic as a series of failed but fixable attempts at ethical collaboration, and not evidence that cooperation is hopeless during crisis. Yes, the pandemic was rife with selfish acts from those previously mentioned cases of financial misconduct, extending to the problem of wealthy countries quickly buying up much of the global vaccine supply. Disturbingly, many people have felt ethically self-assured in their selfishness, such as a professor who approached me after one of my pandemic ethics lectures, complaining to me that COVID-19 vaccines were surely unethical because they allowed “the weak” to survive nature’s culling.

Despite the innumerable examples of bad behavior, there were also innumerable attempts at cooperation that either succeeded or showed enough of a spark of success that future success seems possible. Consider the case of Dorothy Oliver and Drucilla Russ-Jackson, who defied conventional wisdom about the stubbornness of vaccine skeptics by using kindness and respectful human connections to convince nearly their entire rural Alabama town to get COVID-19 vaccinations. At the global level, the World Health Organization, World Bank, and Gavi the Vaccine Alliance (among many others) all made strides toward helping ease the unethical burdens of the pandemic harming the vulnerable of the world. Each organization was in large part prevented from doing better, however, due to running into needless hurdles such as national governments resisting attempts to get more transparency in their national public health data.

International development is an endeavor based on a fundamental optimism: the conviction that helping faraway strangers is a worthwhile task. As became increasingly clear over the 20th century, ethically helping faraway strangers is no easy task. We can easily hurt those whom we seek to help. But as with the instructive failed efforts during the pandemic, the point is that it remains possible for cooperative efforts to do better next time.

In the spirit of the desire to always do better next time in international development, the Center for Values in International Development has partnered with the Michigan State University Center for Bioethics and Social Justice. Our centers share a fundamental optimism that despite the injustices of the world, and the world’s mixed track record of attempts to make them better, the goal of creating a more equitable world is well worth working for.

One obstacle faced by our two Centers’ endeavors is that global health work and global development work remain partly stuck in their own silos, such as in the ways national and international agencies divide up their roles. Yes, effective and meaningful international development work does need to include the development of societies’ health infrastructure, but not to the exclusion of focusing on wider, intersectional issues of healthcare justice. Sectoral segmentation works against wider inclusion, the acknowledgment of intersectionalities, and consideration of structural issues in how we view human wellbeing. It remains all too common to think of health development work as another slice of the overall pie of development needs, alongside transportation development, housing development, better sewage treatment, financial management capacity strengthening, etc.

In my work, I emphasize the importance of distinguishing between the healthcare system vs. the health system. The healthcare system is just one part of the much larger set of social institutions that steer the health of populations, such as the agricultural systems that determine which foods are available in markets and at what prices. So, while healthcare (hospitals, medicines, and such) should get only a slice of the budgetary pie in international development budgets, it is important to remember that housing policies are health policies too; the same goes for transportation policies and numerous other policies. Housing security is crucial for a healthy life. Transportation is essential for meeting other life needs (shopping, accessing healthcare, etc.), while poor transportation policies can lead to air pollution and other unwanted side effects.

The language that began emerging in the 2000s is that we need “health in all policies.” That phrase has two meanings. First, it’s a call to action, asking that we make sure a society’s policies are conducive to health. For instance, development programs that encourage farmers to grow cash crops also need to take into account health impacts, such as the availability of crucial food crops and the related impacts on community nutrition. Second, “health in all policies” is a description of the way the world works. Development programs seeking to change agriculture and other vital parts of social life simply are also health policies, whether we recognize it or not. International development work affects the health of societies in innumerable ways, and often ways that get too little attention. The Center for Values in International Development brings much-needed explicit attention and analysis to the ethical dimensions of international development work and humanitarian response; we need ethics in all policies. The Center for Bioethics and Social Justice enthusiastically joins in that effort, since there is health in all policies, and our Center specializes in getting attention and analysis to the ways that such health impacts positively or negatively contribute to making health systems more “compassionate, respectful, and responsive to people’s needs, so that equity, inclusion and social justice are available to all.”

This piece was also published by the Center for Values in International Development

Welcoming two new faculty to the Center for Bioethics and Social Justice

As 2021 comes to an end, we are excited to introduce two faculty members who will be joining the Center in 2022. Please join us in welcoming them to Michigan State University.

Jennifer McCurdy, PhD, will join the Center in January. Dr. McCurdy was most recently a Multicultural Postdoctoral Fellow in the Philosophy Department at the University of Alaska Anchorage. She is a critical social bioethicist whose work focuses on understanding and eliminating racial and colonial injustices in contemporary health settings and communities. Currently, Dr. McCurdy is working on a scoping review of Indigenous values in the bioethics literature, and she is co-leading a series of Hastings Center special reports on racism and bioethics.

Dr. McCurdy received her PhD in religious studies with emphasis in ethics, colonialism, and critical religious studies from the University of Denver and Iliff School of Theology in 2019. She also holds a Master of Humanities with emphasis in philosophy and bioethics, a Bachelor of Science in nursing, and an HEC-C (Healthcare Ethics Consultant-Certified).

Megh Marathe, PhD, will join the Center next fall with a joint appointment in the Department of Media and Information in the College of Communication Arts and Sciences. Dr. Marathe is currently a President’s Postdoctoral Fellow in the Department of Informatics at the University of California, Irvine. They received their PhD in information from the University of Michigan in 2021.

Dr. Marathe’s research seeks to foster dialogue between expert knowledge and lived experience in the domain of health. Their recent work showed that for both doctors and patients, the boundary between pathologic and normal events is fluid, dynamic, and porous in epilepsy and other episodic conditions. Calling an event a seizure affects the patient’s financial stability, social participation, and life aspirations, and hence, both patients and providers take an expedient approach to diagnosing seizures.

Dr. Marathe’s work advances the fields of information studies, disability studies, and science and technology studies, and generates practical implications for inclusive healthcare in the era of technologized medicine. They are actively seeking collaborators for new projects that: 1) support patients with childhood-onset cancer or epilepsy in the transition to adult care, and 2) examine how neural implants affect medical practice and patient experience. Visit Dr. Marathe’s website to learn more about their work.

Antiseptic Rhetoric: Crisis Standards of Care

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This post is a part of our Bioethics in the News series

By Leonard M. Fleck, PhD

The COVID-19 pandemic has brought to public attention the phrase “crisis standards of care.” This is not a phrase that is especially meaningful to most members of the public. My concern, speaking as a medical ethicist, is that it is not intended to be especially meaningful for the broad public. Instead, it is what I would describe as a bit of “antiseptic rhetoric” intended to cleanse the public conscience of otherwise troubling ethical choices health professionals might be required to make during a pandemic.

Of course, antisepsis is generally good. It prevents potentially life-threatening infections. However, very aggressive antisepsis aimed at creating a hyper-sterile environment can result in an immune system that is “uneducated,” ill-prepared for a powerful pathogen that manages to elude our antiseptic efforts. My concern is that the use of antiseptic rhetoric around COVID-19, as with the phrase “crisis standards of care,” weakens the capacity of the public to understand and thoughtfully address the troubling and tragic ethics issues generated by COVID-19 in both the health care and political sectors of our social life.

Hospital bed illustration
Image description: A grey and white illustration of a single empty hospital bed sitting underneath a light that is shining down onto the bed. Image source: Izwar Muis/Pixabay.

The antiseptic meaning of “crisis standards of care” is that there are too many patients who need care all at once, and consequently, the normal expectations for timely and effective care will not be met. Delays will occur. As a patient, you might be parked in a hallway on a gurney for a few hours until a room becomes available. This is annoying, but hardly cause for an anxiety attack. However, this is very far removed from the reality that patients are facing in Idaho, Montana, Georgia, Florida, and several other states where the Delta variant of COVID-19 has overwhelmed the hospital system.

I was prompted to think about crisis standards of care by a recent article in the New York Times, “’I just cry all the time’: Non-Covid patients despair over delayed care.” The article tells the story of Mary O’Donnell, age 80, who needed a five-hour back surgery procedure that was postponed indefinitely due to the hospital being filled up. She was going to need multiple days in the hospital after surgery. Her concern was that she would be permanently impaired if the surgery were not performed very soon.

Of course, the person who would occupy the bed she needed would be a COVID-19 patient with a life-threatening condition. That person might survive, but maybe not. Mary O’Donnell did not have a life-threatening condition. She was “merely” at risk for losing the functioning of her legs. That is a terrible sentence to write, but it was the medical and ethical reality. This is rationing: painful, tragic, unfortunate, and sometimes unjust.

Here is another headline that better elucidates the meaning of crisis standards of care. “After 169 hospitals, a dad finally got the Covid-19 care he needed—and changed dozens of skeptics’ minds.” Robby Walker, age 52, needed ECMO (extracorporeal membrane oxygenation) to save his life—to serve as an artificial heart and lungs for him. That was in Florida. He ended up being transported by air to a hospital in Connecticut that had an ECMO bed. Readers should realize that this could hardly be the fate of hundreds of other COVID-19 patients needing ECMO. Reed Hickson, age 49 and the father of twelve in Texas, was unable to find an available ECMO bed in all of Texas. He died. That is what “crisis standards of care” means in practice.

Patients with advanced cancers or advanced heart disease needing surgical treatment will have those surgeries postponed with unknown consequences. Maybe a delay of those weeks will make no difference for that cancer; it will be effectively managed. Maybe the cancer has already metastasized, and the fate of that patient is sealed. Maybe the cancer will metastasize in those intervening weeks. Again, this is what “crisis standards of care” means in practice. It is health care rationing that necessarily implies problems of health care justice.

If there are not enough ICU beds or ventilators, then those scarce life-saving resources will go to patients who are judged most likely to survive. How is that judgment made? Can the public be confident it is made fairly? Is it ethically more important to save the most lives or the most life-years? This is a critical distinction.

Another phrase that has attracted some media attention pertains to a hospital invoking “universal do-not-resuscitate orders” for COVID-19 patients. Some right-wing media sites have warned COVID-19 patients that they must stay away from hospitals because hospitals have agreed not to treat COVID-19 patients but just let them die. No doubt those same sites are falsely pushing ivermectin as a treatment you can administer to yourself in the quiet of your own bedroom. What the phrase “universal do-not-resuscitate order” does mean is that if a COVID-19 patient codes in the ICU, there will be no effort to resuscitate them. The justification for a policy that would likely elicit anxiety, anger, and horror in much of the public is that such an effort would put at risk the lives of the health professionals attempting that effort. Further, the patient would most likely, not certainly, die despite that effort.

Here is a hard question: if you are a patient with a cancer or advanced heart disease needing surgery that has been postponed, how should you feel about that policy? You can survive, you want to survive, and you need that bed. Alternatively, if you are a COVID-19 patient in the ICU with a somewhat uncertain prognosis, how should you feel about that policy? These are the painful realities of crisis standards of care. This is health care rationing.

These are policies and policy choices that need public awareness, public understanding, and public legitimation. This requires hospitals and political leaders willing to take the risks associated with informing and engaging the public in discussion of the hard ethical choices that COVID-19 has thrust upon us. Antiseptic language may be innocuous (and politically desirable). However, the immune system of a democratic society, public reason, requires robust, honest, exacting language to strengthen its ability to resist infectious obfuscation and viral disingenuousness.

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Leonard M. Fleck, PhD, is Professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Wednesday, October 20, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Continue reading “Antiseptic Rhetoric: Crisis Standards of Care” →

Listen: Social Justice-Oriented Bioethics

No Easy Answers in Bioethics Episode 25

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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.

Ways to Listen

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.

Who “owns” the healthcare data about you?

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The 2020-2021 Bioethics Public Seminar Series continues next month on March 24. You are invited to join us virtually to learn about artificial intelligence and healthcare data ownership. Our seminars are free to attend and open to all individuals.

Healthcare Artificial Intelligence Needs Patient Data: Who “Owns” the Data About You?

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Adam M. Alessio, PhD

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Zoom registration: bit.ly/bioethics-alessio

Artificial intelligence (AI) is increasingly used in modern medicine to improve diagnostics, therapy selection, and more. These computer algorithms are developed, trained, and tested with our patient medical data. Certainly beyond the healthcare space, many companies—from Facebook to Amazon to your local pub—are using our consumer data. This is data about you, but is it your data? What rights do you have versus the owners of the data? Does medical data used for the benefit of future patients deserve different treatment than consumer data? This lecture will explore examples of AI and an evolving view of data ownership and stewardship in medicine.

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Join us for Dr. Alessio’s online lecture on Wednesday, March 24, 2021 from noon until 1 pm ET.

Adam M. Alessio, PhD, is a professor in the departments of Computational Mathematics, Science, and Engineering (CMSE), Biomedical Engineering (BME), and Radiology. He earned a PhD in Electrical Engineering at the University of Notre Dame and then joined the University of Washington faculty where he was a Professor in the Department of Radiology until 2018. He moved to MSU to be part of the new CMSE and BME departments and the Institute for Quantitative Health Science and Engineering. His research is focused on non-invasive quantification of disease through Artificial Intelligence-inspired algorithms. Dr. Alessio’s research group solves clinically motivated research problems at the intersection of imaging and medical decision-making. He is the author of over 100 publications, holds 6 patents, and has grant funding from the National Institutes of Health and the medical imaging industry to advance non-invasive cardiac, cancer, and pediatric imaging. Dr. Alessio is also the administrative director of the new Bachelor of Science in Data Science at MSU and is looking for partners in the development of a data ethics curriculum at MSU.

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

“There’s no proof that anything works!” The ethics of COVID-19 research

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By Robyn Bluhm, PhD

The New York Times Magazine recently published a long-form story about the tension between treating patients with COVID-19 by any means that might improve their chances of survival and recovery, and enrolling them in clinical trials to establish the safety and efficacy of these treatments, thus improving care both for future patients and for those who survived the trial. As with many stories about health care in the current pandemic, this article both raises perennial issues in bioethics and shows them in their starkest form: the seriousness of the condition of these patients and the lack of knowledge about how best to help them mean that the ethical dilemma described in the story is particularly clear. But a closer look at work in bioethics and the epistemology of clinical research suggests that, while the dilemma is clear, there are more ways forward than the two incompatible ways portrayed in the story.

The story begins by describing the clash between a critical-care physician faced with a COVID-19 patient whose condition was worsening, and a researcher who had enrolled that patient in a clinical trial. The former wanted to give the patient a higher-than-standard dose of the anticoagulant she was being treated with, even though this might mean that she would need to be withdrawn from the trial. The latter advocated for the importance of maintaining the integrity of the study, saying that acting on instinct instead of on evidence “was essentially ‘witchcraft’.”

Unsurprisingly, this characterization did not go over well with the other doctors in the meeting. A less contentious way of describing the situation might have been to say that, while doctors use their clinical judgment to make decisions about how best to use available evidence in caring for a particular patient, this only works when there is evidence available. And everyone agrees that, in the case of COVID-19, there is horrifyingly little evidence. This means that enrolling COVID-19 patients in clinical trials is not depriving them of standard care (care that such patients would ordinarily receive if not in the trial)–standard care for this condition does not yet exist.

Nurse with medical equipment illustrated image
Image description: An illustration of a health care worker wearing blue scrubs, head covering, and face covering. Surrounding them are a stethoscope, face mask, syringe and surgical tools, thermometer, and microscope. The background is light pink. Image source: sunshine-91/Vecteezy.

There is a lot to think about here. Importantly, it’s not the case that the doctors treating seriously ill patients had no idea what to do. They had a wealth of experience treating patients with severe viral infections, with acute respiratory distress syndrome, with cardiac arrest, or with pathological immune reactions (the “cytokine storm” sometimes seen in chemotherapy patients). Some of this knowledge informed the care of early COVID-19 patients, raising the question of which treatments could be successfully generalized to this new patient group.

The notion of generalizable knowledge is in fact central to research ethics. The Belmont Report, which guides research ethics oversight in the United States, draws a bright line between research and clinical practice on the basis of their ostensibly distinct goals. Research aims to provide generalizable knowledge, while clinical practice aims to benefit an individual patient. This way of drawing the distinction meant that when physicians depart from standardly-accepted care in the treatment of an individual patient, it does not count as research (and therefore does not require ethics review). It also leads to the problem described above: enrolling a patient in a research study requires that they forgo their right to individualized care and are treated according to study protocol. Deviations from the protocol, such as the one described in the opening of the New York Times story, are prohibited. Patients whose care does not follow the protocol will usually be withdrawn from the study.

But this sharp distinction between research and practice also makes assumptions about the kind of clinical research being conducted. Schwartz and Lellouch (1967) distinguish between “explanatory” and “pragmatic” approaches to clinical trials. Explanatory trials are designed to minimize the influence of any factors, other than the experimental therapy, that could affect the outcome being measured. These other factors include additional medications and the presence of comorbid disease. Pragmatic trials, by context, are designed to resemble actual clinical practice, where patients often take more than one medication and often have more than one health problem. Pragmatic trials may also enroll a wider variety of participants (especially older participants), permit alterations in the study protocol, be more flexible in the timing of outcome measurement; in general, they are more flexible in their design and analysis. A given trial will fall somewhere on the spectrum between “highly explanatory” and “highly pragmatic” in its design.

In the case of COVID-19, there are good reasons to favor trials that are more pragmatic. First, there are so many factors that might affect prognosis (or were previously thought to do so) – age, gender, weight, blood type, various pre-existing conditions – that the study population cannot be narrowly defined. If it is, then the results of the study will apply only to people in that narrow population. Second, care for critically ill patients is rapidly developing. Even in the absence of an established drug regimen, survival rates have been improving. This means that by the time a trial is completed, the experimental therapy will be implemented in a very different context of care. Perhaps more importantly, because of these first two reasons, a strict, explanatory trial is less likely to give generalizable knowledge than a more pragmatic one (Bluhm and Borgerson, 2018). Research that reflects clinical practice is more likely to be useful in improving clinical practice.

Robyn Bluhm photoRobyn Bluhm, PhD, is an Associate Professor with a joint appointment in the Department of Philosophy and Lyman Briggs College at Michigan State University. She is a co-editor of The Bloomsbury Companion to Philosophy of Psychiatry.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, September 3, 2020. 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.

More Bioethics in the News from Dr. Bluhm: Philosophy, Mental Illness, and Mass Shootings; “Ask your doctor” – or just check Instagram?; Antibiotics: No Clear Course; To Floss or Not to Floss? That’s not the question

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Women cannot afford “nice”: The unpaid labor of gendered caregiving

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By Karen Kelly-Blake, PhD

“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.

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Image description: An illustration of a faceless woman with six arms, each arm holding objects that represent a particular set of tasks: correspondence, computer work, food, entertainment, cleaning, and childcare. Image source: Multitasking Vectors by Vecteezy.

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.

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Image description: Image description: A woman sits on the floor leaning against the back of a couch. Her elbows are resting on her knees with her hands clasped together over her face, eyes closed. Image source: Pixabay.

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.

How do we mitigate the harmful effects of such inequitable gendered expectations?

  • 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 expected to 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 photoKaren 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.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 30, 2020. 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.

More Bioethics in the News from Dr. Kelly-Blake: The Burden of Serving: Who Benefits?; Patient dumping: why are patients disposable?; Incarcerated AND Sick: At Risk for Pain, Injury, and Death; White Horse, White Faces: The Decriminalization of Heroin Addiction; Racism and the Public’s Health: Whose Lives Matter?; Concussion in the NFL: A Case for Shared Decision-Making?

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Dr. Fleck presents at 21st Annual ASBH Conference

Leonard Fleck photoCenter Acting Director and Professor Dr. Leonard Fleck recently attended and presented at the 21st American Society for Bioethics and Humanities Annual Conference, held in Pittsburgh, PA. Dr. Fleck participated in a session titled “Ageism in History, Moral Thought, and Healthcare Decisions,” presenting “Just Caring: In Defense of Fair Innings, Not Extra Innings, for the Elderly.”

Dr. Fleck has provided a summary of his presentation below.

A just and caring society has as its first obligation to assure access to needed and effective health care for all so that, if medically possible, all have an opportunity to achieve a normal life span (their fair innings). It is wrong to deny the elderly (over age 70) access at social cost to needed and effective health care simply because they are old or very old. But it is equally morally objectionable for the elderly to demand unlimited access at social cost to any medical intervention that offers them some opportunity (no matter how small) for some extended life or somewhat improved quality of life. Those are unjust demands by the elderly and cannot be rightly criticized for being ageist.

In the real world, the non-elderly do not wish to pay unlimited sums (payroll taxes) to underwrite the costs of the current generation of the elderly. But it is also the case that the current generation of the non-elderly do not wish to pay more in taxes to support the even greater health care needs of their own future possible elderly selves.

The clearest example I have of “pure” age-based rationing is one of the recommendations we made to the governor in the event of a pandemic in the vicinity of the “Spanish flu of 1918.” We said if there was a shortage of vents/ ICU beds or other such life-saving interventions, no one over age 70 would have access to those interventions. I would not want my grandkids or your grandkids to die so that I could live to my mid-80s or beyond.

There is a new version of a totally implantable artificial heart (TIAH), expected to be in clinical trials in early 2020. This would promise extra years of life to the 500,000 patients each year in the U.S. in late-stage heart failure. The cost per person would be more than $400,000. Many of these patients will be in their 80s or beyond. If all 500,000 patients had an equal just claim to a TIAH, that would add $200 billion per year to the cost of health care. Could we agree through public deliberation no one over age 80 would be eligible for this heart at social expense?

Iibrutinib is for Chronic Lymphocytic Leukemia at a cost of $156,000 per person per year. These patients are mostly older; median onset at age 71. Ibrutinib will fail some at year 2, year 4, year 6, year 8. Then patients either die or (today) have the option of CAR T-cell immunotherapy at a front-end cost of $475,000. (And there are hundreds of thousands of dollars in additional costs per patient for those who experience cytokine release syndrome). 30% of these patients given CAR T-cell therapy will die in less than a year. If we had a biomarker that could identify those patients before the fact, would it be just to still allow access to CAR T-cell therapy if a patient were less than 75, but deny it to patients over age 75 who were identified with 90% probability of being in that 30% group? These are challenges for democratic deliberation.

How do our loved ones make life-and-death medical decisions for us?

Speaking for the Dying: Life-and-Death Decisions in Intensive Care

Susan P Shapiro photo
Susan P. Shapiro, PhD

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Seven in ten older Americans who require medical decisions in the final days of life lack capacity to make them. For many of us, our biggest life-and-death decisions—literally—will therefore be made by someone else. But how will they decide for us? Despite their critical role in choreographing the end of another’s life, we know remarkably little. Susan Shapiro’s new book, Speaking for the Dying, fills that void. Drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital, Shapiro will share how loved ones actually speak for the dying, the criteria they use in medical decisions on behalf of patients without capacity, and the limited role of advance directives in this process.

November 13 iconJoin us for Dr. Shapiro’s lecture on Wednesday, November 13, 2019 from noon until 1 pm in person or online.

Susan P. Shapiro is a sociologist and research professor at the American Bar Foundation. She works at the intersection of law and relationships of trust in which one acts of behalf of a vulnerable other—for example, medical decision making for patients without capacity. Her publications examine the role of law at life’s end, ethics, agency theory, conflict of interest, the professions, securities fraud and regulation, and white-collar crime. In addition to scores of articles, she is the author of Speaking for the Dying: Life-and-Death Decisions in Intensive Care (U of Chicago Press), Tangled Loyalties: Conflict of Interest in Legal Practice (U of Michigan Press) and Wayward Capitalists: Target of the Securities and Exchange Commission (Yale U Press).

In person: This lecture will take place in C102 Patenge Room in East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

Health Care and Social Justice: Just Take Two Aspirin for Your Tumor If You Cannot Afford Your Cancer Care

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Leonard Fleck, PhD

Dr. Stanley Goldfarb is the former Associate Dean of Curriculum at the University of Pennsylvania Perelman School of Medicine. In a recent Wall Street Journal opinion piece, “Take Two Aspirin and Call Me by My Pronouns,” he complained that curricula in medical schools “are increasingly focused on social justice rather than treating illness.” He goes on to say, “A new wave of educational specialists is increasingly influencing medical education. They emphasize ‘social justice’ that is related to health care only tangentially.” Really? Only tangentially?

Readers will recall Dr. Mona Hanna-Attisha, a pediatrician in Flint, Michigan. She had discovered elevated lead levels in many of her pediatric patients. She could have “stayed in her lane,” provided chelation therapy, hoped for the best, and gone home for dinner. If this is what we would have taught her during her medical education, we would have been complicit in suborning a major injustice.

Dr. Hanna-Attisha did the necessary background research, discovered that public officials had switched the source of Flint’s drinking water to save money, which, in turn, resulted in lead being leached into the drinking water. She brought her case to the media and vigorously advocated (successfully) for correcting this health hazard. She did this for the sake of the children in Flint, many not yet born. This was not tangential to her role as a physician; this was integral and essential. This was a matter of social justice. This was part of her medical education in the College of Human Medicine.

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Image description: Dr. Mona Hanna-Attisha is seated at a table smiling. Image source: University of Michigan School for Environment and Sustainability/Flickr

The practice of medicine today is suffused with social justice challenges. As we explain to our first-year medical students, the clinic is not an island of “pure caring,” isolated from the injustices that are pervasive in our health care system and governing policies. Those injustices frequently seep into clinical practice through the hands of physicians who, no doubt, see themselves as just and caring practitioners. This may sound like hyperbole, but I ask you to consider the evidence.

For the past forty years the dominant demand in health policy has been for health care cost containment. I will remind the reader that last year in the United States we spent $3.65 trillion on health care, roughly 18% of our GDP, compared to 11% of GDP in most European nations. If we ask who is responsible for spending more than 70% of those dollars, the short answer is that physicians in the clinic are the responsible agents. Physicians decide whether a patient needs surgery, which drugs to prescribe, what diagnostic tests are necessary, how much home care is needed, and so on. Consequently, if a focal point is needed for controlling health care costs, it will be physicians.

Note that cost control can be a matter of justice or injustice. In either case, physicians will have to be mindful of the justice-relevant consequences of their diagnostic or therapeutic choices. In the 1990s a number of managed care plans used “at risk” reimbursement to elicit more cost-conscious physician clinical behavior. In some cases, as much as 30% of a physician’s income could be “at risk” if they ordered too many tests. They could also earn 30% bonuses if they were especially stingy in their use of tests. Patients knew nothing of these arrangements. Income risks and opportunities such as those could readily shape physician behavior in ways that were less than just. Whether physician judgment in these circumstances would be corrupted would depend upon whether in their medical education they had had the opportunity to reflect upon such future challenges (as opposed to thoughtlessly accepting such practices as “this is the way medicine is practiced today.”)

Putting physician income at risk to control costs related to patient care is crude and obvious. More problematic are the subtle and invisible ways in which physicians control costs justly or unjustly. For example, a patient demands an MRI to rule out brain cancer when a physician is medically certain these are tension headaches. But the physician authorizes the MRI because “insurance will pay.”

If thousands of physicians are indifferent to authorizing such unnecessary care, then the costs of health insurance to employers increase. For employers at the economic margins, that cost increase may mean dropping health insurance as a benefit, thereby adding those employees to the ranks of the uninsured. From the perspective of any individual physician, this is a very remote, invisible consequence of their decisions that creates an injustice. Medical students need to know this to practice medicine justly.

Other employers will change insurance coverage to reduce their costs. They will require their employees to accept insurance with $5000 front-end deductibles. Financially less well-off workers will deny themselves that unnecessary MRI (no injustice there), but they will also deny themselves medically necessary diagnostic procedures (sometimes with deadly consequences) by not even walking into a physician’s office. Why, physicians might ask, should they as physicians be responsible for those bad decisions by patients; there was nothing to diagnose in the examining room. But maybe there was something to diagnose in society? This is sounding a bit more like the situation in Flint. Non-physicians made cost control decisions but counted on physicians to see such decisions as “merely tangential” to the practice of medicine, nothing that should concern them.

Precision medicine has generated more than 90 FDA approved genetically-targeted cancer drugs with annual costs of more than $100,000. These drugs are used with patients with metastatic disease. The vast majority of these patients will gain no more than extra months of life from these drugs, not extra years (though clever media campaigns create a very different impression). For most workers, their health plan will require a 20-30% co-pay for these drugs, which is unaffordable for most workers. Financially well-off managers and executives will be able to afford those co-pays, which means that workers who could not afford the co-pays will have contributed through their premiums to subsidizing that other 70-80% for the well-off. Is that fair? Is that just?

Should physicians caring for these patients silently acquiesce to these insurance arrangements as “too tangential” to medical practice, too far removed from the clinic? Should we, as teachers of future physicians, also silently acquiesce so that more curricular time can be allocated to understanding the mechanisms of action of the next 90 FDA approved targeted cancer therapies? WWHAD: What Would Dr. Hanna-Attisha Do?

Leonard Fleck photoLeonard M. Fleck, PhD, is Acting Director and Professor in the Center for Ethics and Humanities in the Life Sciences and Professor in the Department of Philosophy 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, October 24, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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More Bioethics in the News from Dr. Fleck: Medicare For All: This Is Going to Hurt; Greed Is God: The Divine Right to Avaricious Drug Pricing; Gene Editing: God’s Will or God’s Won’t

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