Episode 10 of No Easy Answers in Bioethics is now available! This episode features Dr. Devan Stahl, Assistant Professor in the Center for Ethics and the Department of Pediatrics and Human Development, and Dr. Christian Vercler, Clinical Associate Professor of Plastic Surgery in the Department of Surgery at the University of Michigan and Co-Chief of the Clinical Ethics Service in the Center for Bioethics and Social Sciences in Medicine. Drs. Stahl and Vercler address a trend known as Snapchat surgeons – plastic surgeons who amass sometimes millions of followers on the social media platform Snapchat by posting uncensored videos of operations they are performing. Together they offer their insight and expertise on the issue, and discuss whether these Snapchat performances are ethical. They also delve into the societal norms and power dynamics at play, and address how to move forward within the profession of plastic surgery in a world where social media seems to be here to stay.
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—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
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.
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.
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.
Based on their recently published book, Imaging and Imagining Illness, the presenters discussed the history of anatomical illustrations, the use of contemporary medical imaging technologies in the doctor-patient relationship, and how medical images affect persons living with chronic illness.
On August 2, 2018, Seth Welch called 911 after finding his 10-month-old daughter, Mary Anne Welch, unresponsive in her crib. Mary was pronounced dead at the scene and the medical examiner determined Mary’s death was the result of malnutrition and dehydration. During interviews, Seth Welch and his wife Tatiana Fusari admitted they were aware of Mary’s skinny appearance for at least a month prior to her death, but claimed that they had fed her appropriately and did not believe her to be ill. The parents are now awaiting trial for felony murder and first-degree child abuse.
The case has made national headlines, because the parents claim their decision not to take Mary to a doctor was based, in part, on their religious beliefs. Mrs. Fusari said she failed to reach out for medical help for her daughter because she feared having her children removed by Child Protective Services, a lack of faith in the medical system, and “religious reasons.” Further, Mr. Welch claims he is being unfairly charged in Mary’s death because of his “very strong faith.” Neither Mr. Welch nor Mrs. Fusari have explained their religious beliefs, but in Facebook videos, Mr. Welch claims he is “not opposed to medicine or doctors,” but he believes some doctors are part of a “priesthood of the medical cult.” He also claims not to believe in vaccines, and expressed a desire to live in a “commune of Christian disciples living off the grid somewhere.” The reasons Mary’s parents did not take her to see a physician appear to be multifaceted, but their claims to religious liberty are a hot button issue in bioethics and politics today.
The case of Mary Anne Welch is yet another in a long line of child neglect and abuse cases where a religious exemption defense is likely to be mounted. All U.S. states have laws prohibiting child abuse and neglect, but 39 states also have laws protecting parents from abuse and neglect charges (though not murder charges) when they fail to provide medical assistance to their children because of their religious beliefs. Religious exemption laws are meant to protect the religious liberty of individuals who use faith-based practices in place of medical science; although in many states the religious exemption only applies to people who are part of “recognized” religious denominations. These exemptions grew out of a Department of Health, Education, and Welfare (HEW) ruling after the 1974 passage of the Child Abuse Prevention and Treatment Act, which specified that religious exemptions be added to states’ child protection laws. In 1983, HEW adopted new regulations that removed the requirement for religious exemption, however, few states have repealed their religious exemption laws. In many states with exemptions, including Michigan where Mr. Welch and Mrs. Fusari reside, courts can order medical services to be provided to a child whose health or life are at risk without medical care.
In nearly all cases, competent adults are free to make medical decisions according to their religious beliefs, and cannot have treatment forced on them for any reason. At the same time, parents have certain obligations toward their children, which restrict their right to exercise their religious beliefs on behalf of their children. In the famous U.S. Supreme Court case Prince v. Massachusetts (1944), the court ruled that “Parents may be free to become martyrs themselves,” but they are not free “to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves.”
The case of Mary Anne Welch is a microcosm of a larger debate happening in health care around religious liberty and the rights of children. The American Academy of Pediatrics (AAP) has stated that parental desires regarding their child’s medical treatment should be followed, unless these decisions clearly go against the child’s best interests. At the same time, for decades the AAP has been opposed to religious exemption laws. In cases where parents are acting maliciously or with gross indifference to the well-being of their child, it is easy to see why overriding parental decision-making would be appropriate. Prosecuting parents for neglect and abuse if their child suffers as a result of their decisions feels appropriate as well. Knowing very little about Mr. Welch and Mrs. Fusari, however, it would be presumptuous to make any judgments about their fitness as parents, or about their care for Mary. At this point it is not clear that given Mary’s weight loss, other reasonable parents in a comparable situation would have taken their child to the doctor regardless of their religious beliefs. Time will tell if Mary’s death should have been foreseeable or if it would have been preventable with proper medical care.
What is likely to happen in the meantime, and seems to be happening already in the media, is that Mr. Welch and Mrs. Fusari’s religious beliefs will be scrutinized. (Their concerns about the dangers of hospitalization are supported by recent studies about medical errors.) Religious exemption laws regarding parental neglect are controversial, and critics are right to question the legitimacy of such laws when children die as a result of their parent’s religious beliefs. Despite their religious beliefs, we ought to hold parents to a standard where they are expected to prevent injuries to their children. At the same time, we ought not to hold parents such as Mr. Welch to a higher standard for parental care, simply because he has particular religious beliefs that are not widely held by other parents. Plenty of parents choose to opt out of certain medical treatments for religious and non-religious reasons alike, and it is not clear that medical orthodoxy should always be determinative of a child’s best interest. Time will tell if other prudent parents would have taken a child in Mary’s condition to the doctor. If that is found to be the case, then Mary’s parents should be held accountable for their decisions.
Devan Stahl, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development in the Michigan State University College of Human Medicine.
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On July 16, Center Assistant Professor Dr. Devan Stahl presented “Ethics Beyond Autonomy: The Case of Snapchat Surgeons” at the International Academy for Bioethical Inquiry (IABI) Summer Symposium, held at Saint Louis University. Based on her recent publication in AMA Journal of Ethics, Dr. Stahl discussed the rise in vaginal cosmetic surgery performed on the social media platform Snapchat and its implications for our cultural conceptions of ‘normal genital appearance.’ Dr. Tobias Winright offered a response to the paper, which was then thoroughly discussed by the conference attendees.
Center faculty members Marleen Eijkholt and Devan Stahl attended and presented at the 14th International Conference on Clinical Ethics Consultation (ICCEC), held June 21-23 in Oxford, England.
Dr. Eijkholt presented as part of a collaborative panel on “Helpfulness in Clinical Ethics Consultation Notes,” which also included Dr. Stahl, Dr. Stella Reiter-Theil, and Dr. Jugen Wallner, who are respectively from Germany and Switzerland. Dr. Eijkholt presented her paper, “An Empirical View on Helpfulness in Clinical Ethics Consultation Notes,” which outlined the data that she had gathered from analyzing case consultation notes from fellow clinical ethicists. She explored the questions: What made their notes helpful? How should clinical ethics consultation (CEC) chart notes be formulated to be most helpful, while being mindful about professional boundaries, and being mindful about the recipients of these notes, i.e. vulnerable health care providers who are not necessarily philosophers? While medical providers are used to reading notes from their fellow consultants in the form of conclusions–such as, “patient is in kidney failure,” “palliative care recommends x dosages of morphine”–ethics consultants hardly ever find themselves faced with a clinical scenario that allows for such “simple” conclusions. Moreover, such authoritarian conclusions are undesirable according to the framework of the clinical ethics profession. CEC recommendations therefore take a different format. After analyzing several notes, Dr. Eijkholt concluded with an acknowledgement of the tension between quality and helpfulness.
Dr. Stahl presented on the panel “Is there a place for clinical ethics consultation outside of the hospital setting?” alongside Kevin Dirksen, Tyler Gibb, and James Hynds. The group discussed models for doing outpatient clinical ethics consultation at their respective hospital settings. Dr. Stahl presented on new efforts here in East Lansing to bridge the inpatient and outpatient settings using ethics consultation handoffs.
Center Assistant Professor Dr. Devan Stahl and co-author John Banja (Emory University) have a target article in the current issue of AJOB Neuroscience, titled “The Persisting Problem of Precedent Autonomy Among Persons in a Minimally Conscious State: The Limitations of Philosophical Analysis and Clinical Assessment.”
Abstract: Determining whether it is ethical to withdraw life-sustaining treatments (WOLST) from a patient in the minimally conscious state (MCS) recalls recurring debates in bioethics, including the applicability of precedent autonomy and the usefulness of quality-of-life assessments. This article reviews the new clinical understanding of MCS and the complexities involved in detecting covert awareness in patients. Given the diagnostic and prognostic uncertainty surrounding most MCS determinations, we review the ongoing debates concerning precedent autonomy as they apply to making WOLST determinations for patients in MCS. We also consider the moral obligations clinicians might have to understand an MCS patient’s advance directives, current preferences, and quality of life. We argue that an optimal approach for making WOLST determinations requires weighing patients’ previous wishes against their current circumstances but that even here, factual as well as ethical vagaries and disagreements will be relatively commonplace.
The full text is available online via Taylor & Francis Online (MSU Library or other institutional access may be required to view these articles).
On June 14, Center Assistant Professor Dr. Devan Stahl delivered the Jean Vanier Emerging Scholar Lecture at the Summer Institute on Theology and Disability in Raleigh, NC. Dr. Stahl was awarded this lectureship based on her dissertation work and letters of recommendation regarding her scholarship on disability. Dr. Stahl’s lecture was titled, “From Idol to Icon: Transforming Medical Images into DisArt.” Based largely on her recent book, Imaging and Imagining Illness, she discussed how fine art can transform medical images and challenge our cultural associations with disability. Dr. Stahl is the third Vanier Emerging Scholar and co-director of the PhD seminar at the Summer Institute.
.@DevanStahl on why she uses the word “monstrous” in her disability art: “We don’t use the word monster anymore, but sometimes we still mean it.” #SITD18
Thankful for friends like Dr. Devan Stahl (@DevanStahl) exploring the nebulous boundaries of story, identity, and art. Sometimes the only way to capture/gesture towards the holiness of the embodied experience. #SITD18pic.twitter.com/QuIQk9aqrI
On April 30, Center Assistant Professor Dr. Devan Stahl gave a plenary address at the State of Wisconsin Association of Neonatal Nurses Annual Education Conference, titled “Palliative Care and End of Life Ethics in the NICU.” Using case studies, she discussed the ethical and medical complexities surrounding decisions for the treatment of severely ill infants, strategies for interacting with families who request inappropriate or non-beneficial treatment for their child, and the obligations of care providers to protect the best interests of infants. 150 nurses from Wisconsin and surrounding states were in attendance.
Authors Trevor M. Bibler (Baylor College of Medicine), Myrick C. Shinall, Jr. (Vanderbilt University Medical Center), and Center Assistant Professor Dr. Devan Stahl have a target article in the May 2018 American Journal of Bioethics, on “Responding to Those Who Hope for a Miracle: Practices for Clinical Bioethicists.” Additionally, AJOB published correspondence from the authors, “Response to Open Peer Commentaries on “Responding to Those Who Hope for a Miracle: Practices for Clinical Bioethicists”,” where the three authors discuss significant points of disagreement, clarification, and agreement from the responses to their article.
Abstract: Significant challenges arise for clinical care teams when a patient or surrogate decision-maker hopes a miracle will occur. This article answers the question, “How should clinical bioethicists respond when a medical decision-maker uses the hope for a miracle to orient her medical decisions?” We argue the ethicist must first understand the complexity of the miracle-invocation. To this end, we provide a taxonomy of miracle-invocations that assist the ethicist in analyzing the invocator’s conceptions of God, community, and self. After the ethicist appreciates how these concepts influence the invocator’s worldview, she can begin responding to this hope with specific practices. We discuss these practices in detail and offer concrete recommendations for a justified response to the hope for a miracle.
The full text as well as the response are available online through Taylor & Francis Online (MSU Library or other institutional access may be required to view these articles).