Leonard Fleck presents on cancer care at annual American Society for Bioethics and Humanities conference

Last month at the 23rd Annual Conference of the American Society for Bioethics and Humanities (ASBH), Center Professor Leonard Fleck, PhD, presented on “Precision Health, Ethical Ambiguity: How Much Cancer Can We Afford to Prevent?” as part of a session on health care allocation and cost. Dr. Fleck has provided a summary of his presentation below.

“Precision medicine” and “precision health” seem to complement one another. We want an effective targeted cancer therapy for our metastatic cancer, but would rationally prefer to prevent the emergence of a life-threatening cancer–the goal of precision health. In a recent book, The First Cell: And the Human Costs of Pursuing Cancer to the Last, Azra Raza, an oncologist, argues that we are wasting tens of billions of dollars annually on extraordinarily expensive cancer therapies that yield only marginal gains in life expectancy. Raza believes these resources (not resources from heart disease or anything else) should be redirected to destroying cancer in its earliest stages, those “first cells.”

A new liquid biopsy (GRAIL) can detect 50 different cancers in very early stages by examining cell-free DNA at a cost of $800. However, 200 million anxious U.S. adults would be candidates for this test annually at an aggregate cost of $160 billion. From the perspective of health care justice, who should pay for these tests? Who should be denied access to these tests at social expense? Should only individuals with a strong family history of cancer have a moral right to this test at social expense? That would cover only 10% of cancers diagnosed in any given year.

We might say individuals known to be at elevated risk for cancer should have these tests paid for as a social expense. That would include smokers and sun worshippers at risk for lung cancer and melanoma. Would non-smokers and responsible sunscreen appliers have just cause for a grievance, i.e., paying for the irresponsible?

Would justice or efficiency require foregoing $160 billion in metastatic cancer care to pay for this preventive effort? What would a “just enough” balancing of therapeutic objectives look like? The basic economic and ethical problem is that we would be paying $160 billion annually that we knew would yield negative results more than 99% of the time. This is not obviously either a wise or just use of social resources. Moreover, this situation calls attention to the “statistical lives vs. identifiable lives” problem.

The “statistical lives” are the lives we would hope to save from metastatic cancer with the liquid biopsy test. These are nameless and faceless lives, unlike the identifiable lives that are the patients with metastatic cancer who want access to the hyper-expensive targeted therapies that might extend their lives a few months, maybe an extra year or so. In contrast, the hope is that each statistical life saved would result in extra decades of life for that individual.

A key ethical question is whether statistical lives and identifiable lives in this situation are of equal moral weight. Or are the identifiable lives with metastatic cancer more “morally worthy” of social resources because they are suffering and near dying? Or, as Raza contends, are we ethically obligated to shift resources from metastatic cancer patients (who have been effectively treated up to this point) to preventive efforts associated with liquid biopsies hoping to save more lives and life years? How do you, my currently healthy readers, think we ought to decide?

Dr. Fleck presents at 21st Annual ASBH Conference

Leonard Fleck photo Center 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.

Center faculty present at 20th annual American Society for Bioethics and Humanities conference

Center faculty members Dr. Len Fleck and Dr. Devan Stahl recently presented at the 20th annual American Society for Bioethics and Humanities (ASBH) conference, held October 18-21 in Anaheim, CA.

Leonard Fleck photo Dr. Fleck presented on “Parsimonious Precision Medicine: Wicked Problems.” The phrase “precision medicine” refers to targeted cancer therapies and immunotherapies that are aimed at defeating metastatic cancers with specific genetic signatures. There are more than ninety such FDA approved therapies, all of which have costs of more than $100,000 per year with some costing as much as $475,000 (CAR-T cell therapies). To date, none are curative. On the contrary, for the vast majority of patients gains in life expectancy are measurable in weeks or months, not years. These results suggest that for a just and caring society with limited resources to meet virtually unlimited health care needs, we ought to be more parsimonious in how we use these drugs and who we choose to treat.

The key point of the presentation was that whether we choose to be parsimonious in our use of targeted therapies or not, we will generate what the literature has come to describe as “wicked problems” (ethically, economically, and politically speaking). A “wicked” problem is essentially a problem for which every proposed solution (including doing nothing) generates even more problems that are equally, or more, challenging.

Devan Stahl photo

Dr. Stahl gave two panel presentations at ASBH this year. The first, “Theories of Identity and the Problem of Precedent Autonomy,” explored the ethical tensions that arise when patients in disordered states of consciousness appear to have current preferences that contradict their prior wishes. The panelists, including Dr. John Banja (Emory University) and Dr. Nancy Jecker (University of Washington), discussed the limits of philosophical analysis and theory regarding the status of precedent autonomy.

In her second presentation, Dr. Stahl was joined by Darian Goldin Stahl (Concordia University) and Dr. Jeffrey Bishop (Saint Louis University) to discuss their latest book Imaging and Imagining Illness, which explores the effect of medical imagining on patients and ways medical images can be transformed through art and philosophy.

Center faculty presentations from ASBH 2017

The 19th Annual American Society for Bioethics and Humanities (ASBH) Meeting was held October 19-22 in Kansas City, MO. Center faculty Laura Cabrera, Guobin Cheng, Marleen Eijkholt, Leonard Fleck, Devan Stahl, and Tom Tomlinson attended and presented at the conference. The post below includes abstracts for each presentation (abstracts have been edited for length).

Laura Cabrera photo

Laura Cabrera, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences, Department of Translational Science & Molecular Medicine
Dr. Cabrera participated in a law, public health policy, and organizational ethics paper session, presenting “Centering the Re-Emergence of Psychiatric Neurosurgery: A Cross-National Comparison of Ethical and Societal Concerns in Media Coverage.”
Abstract: In light of the dark history of many surgical approaches to treat psychiatric disorders, understanding contemporary trends around the re-emergence of different methods to which patients and the public are exposed is essential to understanding their views and receptivity to them, both for healthcare and society. We conducted an in-depth content analysis of media articles reporting on all types of psychiatric neurosurgery between 1960 and 2015 with a focus on North America (Canada and the USA), Germany and Spain. After manually curating for duplicates and irrelevant returns, 167 Spanish articles, 160 German articles, and 217 articles from North America were analyzed inductively for content and coded for the phenomena of interest. Overall, the tone across articles was positive across interventions; articles retrieved from the German press were generally the most critical of the sample. Identity and privacy were among the few noted ethical and philosophical issues, and again found mostly in German articles. References to earlier forms of psychiatric neurosurgery were common across articles published after 2005. The findings suggest that while modern press reports about psychiatric neurosurgery tend to be positive and reference to historical antecedents are made in contemporary news, there is limited ethical and philosophical reflection. Future studies will further inform the influence of these trends on centering stakeholder values, perceptions of risk, and hope for benefits.

Marleen Eijkholt, JD, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences, Department of Obstetrics, Gynecology and Reproductive Biology
Dr. Eijkholt participated in a clinical ethics paper session, presenting “Tools for Trouble: Pain as a Clinical Ethical Torment.”
Abstract: Pain is a complex phenomenon that entails many clinical ethical challenges. Heterogeneity of providers and patients in the USA makes the context of pain treatment a hotbed for troubling practices. The current spotlight on the “opioid epidemic” reveals some of these challenges. For example, an increasing amount of requests relate to questions about the provider obligations in pain management, specifically for uninsured patients who are of an ethnic minority group. Restrictive guidelines reduce the epidemic to a biomedical pain treatment problem and do not address pain as a social construct, impacted by culture, environment and gender. While anthropological studies examine different ethnic factors contribute to management, perception and expression of pain, the clinical ethical literature is silent on these issues. I ask: What tools exist to address the socially constructed dimensions of pain in the clinic, and how should these be evaluated or developed?

Leonard Fleck photo Leonard Fleck, PhD
Professor, Center for Ethics and Humanities in the Life Sciences, Department of Philosophy
Dr. Fleck participated in a capacity, informed consent, and the quality adjusted life year paper session, presenting on “Precision QALYs: Precisely Unjust.”
Abstract: A recent essay by Heale (Journal of Medical Ethics, 2016) argues for the moral legitimacy (utility and equity) of individualized and personalized QALYs. He contends, for example, that it would be unfair to deny a patient access to $100,000 cancer drug that would give this patient three extra years of life simply because the average patient with that cancer would only gain four extra months of life. He assumes, arguendo, that some biomarker would allow us to identify such a patient before the fact (which is one objective of the precision medicine initiative), and concludes, from a cost-effectiveness perspective, that it would be unjust to deny this patient that drug. I believe this argument is flawed for several reasons. Other justice-relevant considerations, not just cost-effectiveness and utility, are ethically necessary for making many allocation decisions that are “just enough.” “Ragged edges” and clinical uncertainty undermine the practical applicability of his individualized QALYs methodology. Irrelevant personal utilities are given undeserved ethical weight (Heale gives a Jehovah’s Witness example with this consequence). Ethically irrelevant features of an individual are given ethical weight by Heale that results in their being denied access to care from which they would otherwise significantly benefit. To illustrate, a cancer drug whose cost is related to dose size would be cost-effective for a 70 kg person but cost-ineffective for a 90 kg person, though both individuals would otherwise benefit equally. To conclude, precision medicine requires complex considered judgments of health care justice.

Devan Stahl photo

Devan Stahl, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences, Department of Pediatrics and Human Development
Dr. Stahl led the Christian Theology and Bioethics Affinity Group, discussing the recent book The Finest Traditions of My Calling with the book’s author Abraham Nussbaum. Dr. Stahl was also on the Religion, Spirituality, and Bioethics Affinity Group panel. The group’s focus was religious and spiritual aspects of clinical ethics consultation.

Tom Tomlinson photo Guobin Cheng photo Tom Tomlinson, PhD
Director, Center for Ethics and Humanities in the Life Sciences; Professor, Department of Philosophy
Guobin Cheng, PhD
Adjunct Associate Professor, Center for Ethics and Humanities in the Life Sciences; Associate Professor, Southeast University, China
Drs. Tomlinson and Cheng participated in a panel session, presenting on “Clinical Ethics in China and the United States: Worlds Apart?”
Abstract: China can seem like (half) a world away from the United States. Different political and legal systems, different health care and insurance systems, different culture and social values. The list goes on. So one would not be surprised if similar clinical situations raised very different ethical questions, or led to different ethical conclusions, for different ethical reasons. And indeed this can be true. But one can also find the same questions, the same conclusions, and appeals to the same reasons. It is often claimed that Chinese people place more value on the interests of the family and less on the interests or rights of the individual. Some cases will be designed to explore this hypothesis. Others will aim to surface whether quality of life plays different roles in decisions about continued treatment, and in what ways Chinese and American parents are obligated to protect their child’s best interest in decisions about medical treatment.

Center faculty present at 18th Annual ASBH Meeting

The 18th Annual American Society for Bioethics and Humanities Meeting was held October 6-9 in Washington, DC. Center faculty Libby Bogdan-Lovis, Karen Kelly-Blake, Devan Stahl, and Len Fleck presented at the conference. The post below details each researcher’s presentation in their own words.

Libby Bogdan-Lovis, MA
Assistant Director, Center for Ethics and Humanities in the Life Sciences
In concert with research collaborators Karen Kelly-Blake, Nanibaa’ Garrison, (Seattle Children’s Hospital) and Faith Fletcher (University of Illinois Chicago), we presented “Medicine’s Mirror Image Agenda: Covert Costs of Racial/Ethnic Concordance in the Medical Workforce.” Our project is supported by the contributions of research assistants Brittany Ajegba (MSU College of Human Medicine student), Nichole Smith (Vanderbilt premedical undergraduate), and Morgann Brafford (MSU psychology/anthropology undergraduate).

Our team reported results of a 2000-2015 scoping literature review to examine presumed benefits of matching underrepresented minority (URM) physicians with patients sharing similar race/ethnic identities. In our analysis we considered the nature of medical workforce policy strategies. We reported that the most frequently cited rationales for increasing the URM medical workforce were service commitment and enhanced physician-patient relationship. The primary strategy for achieving this goal was pipeline programs. We argued that even though URMs provide a substantial proportion of medical care to the underserved, and quite possibly such workforce patterns reflect focused altruism to serve one’s own, parity and service rhetoric may covertly shape the professional lives of Native American, African American, and Latino underrepresented minority (URM) physicians. We questioned whether those strategies might not unevenly affect URM physicians, selectively placing service expectations not similarly placed on their non-minority physician colleagues. We concluded by explaining that social justice of the profession entails equitable sharing of responsibility to meet the needs of the underserved and that social justice in the profession demands that URM physicians deserve an unfettered future and should not be viewed as instruments to fix societal structural determinants of health.

Devan Stahl, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences
This year at ASBH I had the opportunity to organize and lead two sessions. First, as the co-leader of the Bioethics and Christian Theology Affinity Group, I helped to organize a panel which featured Dr. Lydia Dugdale’s new book, Dying in the Twenty-First Century: Toward a New Ethical Framework for the Art of Dying Well. Dr. Dugdale’s presentation was followed by two responses by Dr. Paul Scherz and Dr. Mark Cherry. The session was well-attended and generated much conversation.

The next day, I helped to lead a workshop: “Responding to Those Who Hope for a Miracle: Conceptual Resources and Practical Responses for Clinical Ethicists” with Drs. Trevor Bibler, Myrick Shinall and Ashley Stevens. The workshop began with an overview of the theological concepts that frequently accompany the beliefs of patients and families who hope for a miracle. We then presented case studies to show four ways patients employ the term “miracle” as they struggle to understand God and strategies for responding to these four types of invocators. We lead breakout sessions to help attendees identify the types of miracle language discussed and best practices for responding to each. The session was very popular, which unfortunately meant several people could not fit in the space provided. Positively, the workshop had a lot of good discussion and participation by attendees.

Len Fleck, PhD
Professor, Center for Ethics and Humanities in the Life Sciences
I presented Saturday morning at ASBH. The title of my presentation was “Last Chance Therapies: LVAD and a Heart Transplant?” The ethical issue I was addressing here is related to cardiac transplantation. Only about 2200 hearts are available for transplantation each year in the US, so this is an absolutely scarce resource. Dick Cheney, former Vice-President, after five heart attacks (starting at age 37) and every imaginable cardiac intervention to sustain his life, was diagnosed as being in late-stage heart failure in late 2010. He had surgically implanted at that time a Left Ventricular Assist Device [LVAD] to maintain marginal heart function. He almost died in surgery, spent 40 days in the ICU, and was listed for a heart transplant. He received that transplant at age 71 in 2012. Many will argue (including me) that Cheney had had his “fair innings,” and that a younger person, a bit further down on the transplant list, should have gotten that transplant. But that person died instead (the “unknown” patient, and without any monument).

Click through to continue reading about Dr. Fleck’s research

Center faculty present at 16th Annual ASBH Meeting in San Diego

The 16th Annual American Society for Bioethics and Humanities Meeting was held October 16-19, 2014, in San Diego, CA. Three Center faculty members attended and presented on various topics.

Tom Tomlinson, PhD
Along with John Lizza, Robert Truog, and Don Marquis, I was on a panel entitled “Donation Following Cardiac Death: Does It Matter Whether Donors Are Really, Most Sincerely Dead?” The discussion focused on when it was legitimate to say that these donors had “irreversibly” lost circulatory and respiratory function, so that they could be declared dead prior to organ retrieval. My panel presentation was titled “Irreversibility is a Relational Property.”

Monica List
I presented a paper titled “The Case for Veterinary Bioethics”; this was part of a paper session on Animal Ethics. My presentation focused on examining the ethical frameworks used in veterinary medicine, and identifying gaps in these frameworks that may signal a need to expand them. I proposed that these broadened frameworks can be conceptualized as “veterinary bioethics.” Despite the fact that animal ethics has never been a very prominent track at ASBH conferences, the session was well attended. I received several interesting questions from the audience; one of those questions was whether or not a veterinary bioethics framework would contribute anything new to medical bioethics. I thought this was a great question that our work at the Center might help answer, since our faculty teach in the Medical Colleges as well as the Veterinary College. Building on the feedback and comments I received, I hope to further develop this project for future publication.

Leonard Fleck, PhD
I did a presentation titled “Whole Genome Sequencing: The Devil in the DNA.” The basic argument was this: Whole Genome Sequencing [WGS] is very promising from a medical point of view. It can be used to identify an individual’s responsiveness to drugs, or an individual’s carrier status (which may be important for reproductive decisions), or whether an embryo is free of serious genetic vulnerabilities. The promises of WGS are easier to realize because the cost of doing this is about $1000 today. However, there are some devilish details within this DNA. Continue reading “Center faculty present at 16th Annual ASBH Meeting in San Diego” →

Center faculty travel to Atlanta to present at 15th Annual ASBH Meeting

The 15th Annual American Society for Bioethics and Humanities Meeting was held October 24-27, 2013, in Atlanta, GA. Several of our faculty members attended and presented on various topics.

“Autonomy’s Child: Exploring the Bounded Warp and Woof of Shared Decision-making”
By Elizabeth (Libby) Bogdan-Lovis and Karen Kelly-Blake

Shared decision-making is commonly cited as a clinical encounter ideal, yet current assessments suggest that multiple barriers impede its full implementation. To explore some of those barriers we examined obstacles to shared decision-making surrounding the place of birth, where the available clinical evidence on best practice is ambiguous. Disagreement over interpretation of the available evidence, presentation of the relevant information, maternal and fetal rights and responsibilities and physician rights and responsibilities commonly confound the interaction. This presentation examined shared decision-making complexities over who is, and who should be, the authorized decision maker for the mother-baby dyad when there is profound disagreement over interpretations of risks as well as determination of best interests. This presentation usefully highlighted difficulties in robust shared decision-making implementation.

“The e-portfolio as a teaching approach: fostering reflective thinking in interdisciplinary bioethics programs”
Poster by Monica List

Bioethics is arguably defined as an interdisciplinary field. However, how this interdisciplinarity is expressed in the teaching of bioethics depends strongly on the nature and purpose of each particular program. In 2012, the Specialization in Bioethics, Humanities, and Society (BHS) at Michigan State University launched a 1 credit, fully online e-portfolio course. One of the main objectives of the course was to provide BHS students with an opportunity to integrate, and critically reflect on, the knowledge and experiences gained through their specialization coursework. In this first offering of the e-portfolio course, 10 undergraduate students from 9 different majors conducted an analysis of the case of STD research in Guatemala from 1946 to 1948, using a study guide prepared by the Presidential Commission for the Study of Bioethical Issues. This experience provided valuable information on the benefits and shortfalls of using e-portfolios in interdisciplinary teaching and assessment in bioethics programs at the undergraduate level.

“Parsimonious Care: Penurious Promises or Just Prudence?”
By Leonard M. Fleck, Ph.D.

The American College of Physicians generated a small media firestorm with the 6th edition of their Physicians Ethics Manual wherein they recommended physicians should provide “parsimonious care” to their patients for reasons of both equity and efficiency. Some critics noted that parsimony carries the connotation of stinginess; other critics maintained that parsimonious care represented disloyalty to the best interests of patients.

Dr. Fleck defends the claim that parsimonious medical care is presumptively morally permissible if the following conditions are met: (1) We have limited resources to meet virtually unlimited health care needs. (2) As a society we are failing to meet numerous just claims to needed health care because we squander resources on the very well- insured. (3) Objective medical grounds exist for believing a specific intervention will likely yield little benefit. (4) Those objective medical grounds are captured in evidence-based, expert-derived practice protocols congruent with the core values of medicine. (5) The parsimonious practice protocols are public and transparent and legitimated through a process of rational democratic deliberation. (6) Savings achieved through parsimonious practices are captured and redistributed toward meeting higher priority health care needs. (7) High-cost patients are not discriminated against; instead their health care needs are met as efficiently as possible with effective health care interventions, even if those interventions are not cost-effective. The goal is not maximal parsimony but equitable parsimony.

“Stewardship Model of Biobanking: Ethical Challenges are Systems Challenges”
Poster by Ann Mongoven, Michigan State University and Stephanie Solomon, St. Louis University

Although there is currently great interest in increasing informed consent for biobanking, informed consent for biobanking is incoherent. Biobank recruits asked for biosamples cannot weigh risks and benefits of future unknown research. This poster argued that the use of advance directives and surrogate decision-makers in clinical medicine offers a model for biobanking ethics. Patients considering future unknown medical scenarios can express relevant values through advance directives, and appoint a surrogate decision-maker. In practice, advance directives are the most effective when they are neither too vague nor too specific, and when they focus on general values rather than specific treatment choices—like the popular “Five Wishes” advance directive. They are also more successful when they are reinforced systematically within a health system and community. Biobanks should develop an analogue of the “Five Wishes” that is neither too vague (blanket consent) nor too detailed (tiered consent), that stresses relevant values rather than specific research choices, and that is formed by and forming of community engagement to support the biobank’s de facto surrogate role.

“Biobank or Biotrust?: Metaphor and the Ethics of Biobanking”
Poster by Ann Mongoven

Metaphors are word-symbols that are partially formative of the moral world. Because non-literal, all metaphors highlight some aspects of the moral landscape while obscuring others. Common metaphors used in biobanking ethics are often used unreflectively: biobank; specimen; donor; etc. For example, while “bank” aptly signals a repository, “bank” is a commercial metaphor. It may not well capture potential public purposes of biobanking. “Donor” implies intent, but many biobank participants are unaware that their tissue has been banked or is being used in research. They may be more “conscript” than “donor.” Metaphorical analysis enables a two –way critique, exploring the relationship between the language used for biobanking and actual institutions or practices. The poster argues that many commonly-used metaphors for biobanking are ethically distorting; that we should experiment with other metaphors; and that given the complexity of this new enterprise we may need multiple metaphors to describe it and resist distortions.

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