Louisiana's "Medically Futile" Unborn Child List: Ethical Lessons at the Post-Dobbs Intersection of Reproductive and Disability Justice.

Ableist attitudes and structures are increasingly recognized across all sectors of health care delivery. After Dobbs, novel questions arose in the United States concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. In this essay, we examine the Louisiana Department of Health's emergency declaration, "List of Conditions That Shall Deem an Unborn Child 'Medically Futile,'" issued August 1, 2022. We raise a number of medical, ethical, and public health concerns that lead us to argue that the declaration should be rescinded. Analysis of this ethically objectionable declaration provides valuable lessons about how to uphold both reproductive and disability justice in a post-Dobbs landscape.

Why Medicine Needs a Theology of Monstrosity.

For centuries, philosophers and theologians debated the meaning of monstrous births. This article describes the debates that took place in the early modern period concerning the origins of monstrous births and examines how they might be relevant to our understanding of disability today. I begin with the central questions that accompanied the birth of conjoined twins in the early 17th century as well as the theological origins of those questions. I then show the shifts that occurred in philosophical debate in the 18th century, which reveal the changing understanding of God's interaction with creation, as well as the burgeoning medical responses to monstrous births. By reexamining these earlier debates, I claim some of the earlier questions posed by philosophers and theologians have been neglected but remain relevant in bioethics debates concerning how best to consider and treat newborns with certain disabilities.

The capacity to designate a surrogate is distinct from decisional capacity: normative and empirical considerations.

The capacity to designate a surrogate (CDS) is not simply another kind of medical decision-making capacity (DMC). A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who lack DMC for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases (eg, Alzheimer's disease). That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions.

The continuing need to combat disability discrimination in organ transplantation.

New evidence provides additional confirmation that when considering persons with intellectual and developmental disabilities, categorical exclusions as well as denials based on the need for support systems are unethical and discriminatory.

Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care.

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) "Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations," which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both distributive and recognitive justice. The disability rights movement's demand "Nothing about us, without us" requires substantive inclusion of disabled people in decision-making related to their interests, including in crisis planning before, during, and after a pandemic like Covid-19.

A Process-Based Approach to Responding to Parents or Guardians Who Hope for a Miracle.

When parents or guardians hope for a miracle for their child who is critically ill, ethical and professional challenges can arise. Often, although not always, the parent or guardian's hope for a miracle entails a request for continued life-sustaining interventions. Striking a balance between the pediatrician's conception of good medicine and the parent or guardian's authority requires a response that is sensitive, practical, and ethically sound. In this article, we recommend 3 cumulative steps that promote such a response. First, we recommend ways of exploring essential issues through open inquiry, interdisciplinary dialogue, and self-reflection. As part of this exploration, pediatricians will discover that parents or guardians often have unique ideas about what a miracle might be for their child. The second step includes analyzing this diversity and seeking understanding. We classify the hope for a miracle into 3 distinct categories: integrated, seeking, and adaptive. After the pediatrician has categorized the parent or guardian's hope, they can consider specific recommendations. We detail context-specific responses for each kind of hope. By attending to these nuances, not only will the parent or guardian's perspective be heard but also the pediatrician's recommendation can strike a balance between advocating for their conception of good medicine and respecting the parent or guardian's beliefs.

Death by Neurological Criteria: Caring for Families amid Tragedy.

When a patient is declared dead using neurological criteria, intense emotional and ethical challenges can follow. In our experience as clinical ethicists, consults surrounding the declaration of "brain death" can be some of the most difficult. In what follows, we describe some best practices related to death by neurological criteria (DNC). We begin with important policies hospitals need to have in place to ensure that death is properly understood by all members of the clinical team and place some limits on the authority of families to demand continued "treatment" for deceased patients. Next, we explain how best to prepare families for the diagnosis. We then discuss how to talk to families when breaking the news concerning DNC. Finally, we describe how to approach a family that is resisting the determination of death. SUMMARY: This article advises clinicians on how to talk to families about brain death.

Patient reflections on the disenchantment of techno-medicine.

Over one hundred years after Max Weber delivered his lecture "Science as a Vocation," his description of the work of the physician in a disenchanted world still resonates. As a chronically ill patient who interacts with physicians frequently, I struggle with reconciling my understanding of my ill body with how my physician makes sense of my illness. My diagnosis created an existential crisis that caused me to search for meaning in my embodied experience, but I soon learned there is little room for such a search within modern biomedicine. Instead, I turned to fine art to help me make sense of my ill body and its purpose in my life. With the aid of my printmaker sister, Darian Goldin Stahl, I have transformed the magnetic resonance images of my body into works of art, which help to re-enchant my body and give purpose to my illness.

What Should Be the Surgeon's Role in Defining "Normal" Genital Appearance?

The recent rise in women seeking cosmetic surgery of their genitalia (labiaplasty) coincides with the increasing number of surgeons posting videos of these operations on social media accounts and websites. Sociocultural influences significantly contribute to our ideas of what constitutes healthy and pathologic, and surgeons have historically played a role in defining "normal" and "abnormal" anatomy. In the nineteenth century, Saartjie Baartman-a woman with a large posterior and unusually long labia minora-was used by physicians to "educate" the public about these differences. We examine the parallels with the twenty-first century practice of surgeons using social media to educate patients about the operations they perform and discuss ethical and professional hazards associated with this practice.

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 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.

Addressing a Patient's Hope for a Miracle.

Ill patients may make decisions to continue aggressive life-prolonging care based on hope for a miraculous recovery, and clinicians can find goals of care discussions with these patients extremely challenging. Thus, palliative care providers may be asked to help in these discussions. The concept of "miracle" can express a multitude of hopes, fears, and religious commitments. Effective, sensitive engagement requires the palliative care provider to attend to these variegated hopes, fears, and commitments. This case presents a typology of ways patients express hope for a miracle along with analysis of the motivations and beliefs underlying such hopes and suggestions for tailored responses by palliative care providers.

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.

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

For many patients, viewing one's 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 patient's 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.

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 medicine's 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 patient's lived experience.

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.