Devan Stahl

Responding to Those Who Hope for a Miracle: Practices for Clinical Bioethicists

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 invocators conceptions of God, community, and self. After the ethicist appreciates how these concepts influence the invocators 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.

Living into the imagined body: how the diagnostic image confronts the lived body

In this paper I will show how the medical image, presented to the patient by the physician, participates in medicines cold culture of abstraction, objectification and mandated normativity. I begin by giving a brief account of the use of anatomical imaging since the Renaissance to show how images have historically functioned in contrast to how they are currently used in medical practice. Next, I examine how contemporary medical imaging techniques participate in a kind of knowledge production that objectifies the human body. Finally, I elucidate how physicians ought to place the medical image within the context of the lived body so as to create a healing relationship with the patient. In all this I hope to show that the medical image, far from a piece of objective data, testifies to the interplay of particular beliefs, practices and doctrines contemporary medicine holds dear. To best treat her patient, the physician must appreciate the influence of these images and appropriately place them within the context of the patients lived experience.

The Persisting Problem of Precedent Autonomy Among Persons in a Minimally Conscious State: The Limitations of Philosophical Analysis and Clinical Assessment

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.

Seeing illness in art and medicine: a patient and printmaker collaboration

For many patients, viewing ones illness through medical imaging technology can be an unsettling experience. Patients are likely not to see themselves represented in medical images and may find it difficult to reconcile this new image with their own body image. In this article, a patient with multiple sclerosis and a printmaker describe a collaborative project they have developed, wherein the patients medical images are incorporated into pieces of fine art. The aim of the project is to open up the interpretation of the ill-body to persons outside the medical field, so as to do justice to the multiple dimensions of the body chronically ill persons often inhabit.

Should DBS for Psychiatric Disorders be Considered a Form of Psychosurgery? Ethical and Legal Considerations

Deep brain stimulation (DBS), a surgical procedure involving the implantation of electrodes in the brain, has rekindled the medical community’s interest in psychosurgery. Whereas many researchers argue DBS is substantially different from psychosurgery, we argue psychiatric DBS—though a much more precise and refined treatment than its predecessors—is nevertheless a form of psychosurgery, which raises both old and new ethical and legal concerns that have not been given proper attention. Learning from the ethical and regulatory failures of older forms of psychosurgery can help shed light on how to address the regulatory gaps that exist currently in DBS research. To show why it is important to address the current regulatory gaps within psychiatric DBS, we draw on the motivations underlying the regulation of earlier forms of psychosurgery in the US. We begin by providing a brief history of psychosurgery and electrical brain stimulation in the US. Against this backdrop, we introduce psychiatric DBS, exploring current research and ongoing clinical trials. We then draw out the ethical and regulatory similarities between earlier forms of psychosurgery and psychiatric DBS. As we will show, the factors that motivated strict regulation of earlier psychosurgical procedures mirror concerns with psychiatric DBS today. We offer three recommendations for psychiatric DBS regulation, which echo earlier motivations for regulating psychosurgery, along with new considerations that reflect the novel technologies used in DBS.

Caretaking through Art: A Sibling Story

For some, a picture is worth a thousand words, but for my neurologist it was worth only two: BIt’s MS!^ The story of my illness is full of pictures—or more precisely, magnetic resonance images (MRIs), which reveal the progression of my illness to my doctors. My medical chart is populated with hundreds of these images from over the years. Yet, this living and ever-growing pictorial document fails to capture how I see myself or what it is like for me to live with illness. The chart will not reveal, nor has any doctor ever asked, how I subjectively experience illness—the anxiety I feel when I trip, drop my keys, or when I think about my future as a physically active academic who may one day lose the ability to walk or think rigorously. Nor does my chart convey the pride I feel in being part of a community of disabled women who teach me the importance of appreciating life. Multiple Sclerosis affects not only the myelin sheath surrounding my nerves but also my self-identity and my relationships. Through printmaking, my sister Darian was able transform my MRIs from cold diagnostic instruments into sources of creativity and expressions of my subjectivity. Sharing my experiences of illness with Darian takes a certain amount of vulnerability, but her art empowers me to take ownership of my identity and share my story with others. I now see lithography, intaglio, and silkscreen as a kind of complementary therapy that helps me to resist the medical gaze, which denies me agency and encourages me to submit my body to others for examination. With my neurologist I am a passive patient; with Darian I am an active collaborator in my story. J Med Humanit DOI 10.1007/s10912-016-9407-3

Is there a right not to know

Does a patient with advanced incurable disease have a right not to hear the bad news? We think not. Failing to disclose a poor prognosis undermines patient autonomy and increases the likelihood of poor end-of-life care.

A Christian Ontology of Genetic Disease and Disorder

This article will present an ontology of the human person that is predicated upon a Christian understanding of God the Creator. It argues that defining ontological personhood in relation to God is essential for determining how Christians should understand personhood and human nature and their relation to genetic disease and disorder within human life. To show how a theological account of ontology can influence genetic debates, the article first explores why it is necessary to define personhood as an ontological reality granted by God in creation. Next, the article discusses how we ought to understand human nature in relation to fallenness and sin. Finally, the article explores how our vision of resurrected bodies within the Kingdom of God can inform our treatment of those living with genetic diseases and disorders in our present communities. Within the classic Creation–Fall–Redemption narrative, the article focuses on the status of individuals whose bodies are often deemed subhuman by our contemporary definitions of personhood.

In Media Res: Commenting on the Trajectory of Lives

The stories in this issue of Narrative Inquiry in Bioethics demonstrate two important things. First these stories explore the space between bodily impairment and the social structures that both enable and constrain the flourishing of those who are differently embodied. The authors of these narratives resist the dominant biomedical interpretation of their impairments, but also demonstrate their dependency upon others—social, medical, or familial others. Second, in writing these narratives, the authors are also engaged in an act of identity formation, which sometimes challenge and sometimes embrace the label of disability. By telling their stories in the middle of the action of their lives—in media res, taking up or resisting the label of disability—they also demonstrate the way in which lives can be lived open to new possibilities and interpretations.