In this issue of the Hastings Center Report, Daniel Brudney suggests that clinicians have an overly deferential attitude toward their patients’ surrogate decision-makers that is rooted in a wrongful investment of moral authority. He maintains that surrogate decision-makers have no moral right to decide for their loved ones and that their value in the decision-making process is limited to their knowledge of their loved one's preferences. If operationalized, Brudney's framework would ease the way for clinicians to remove a surrogate who (...) cannot provide information relevant to the patient's preferences and to resort to a paternalistic model of decision-making. Brudney fails to consider that the value of the surrogate does not flow from the surrogate, but rather from the patient's moral claim to have decisions made for him or her by a loved one. This claim recognizes that surrogates have intrinsic value through their relationship to and knowledge of the patient. Bioethics consultation services can assist clinical teams in engaging with the human crowd that surrounds each patient and navigating conflicting values and goals. This relational approach embraces the “mire and blood” that is endemic to relationships and clinical encounters. (shrink)

“I'm Jewish, you know, and my mother said, ‘Always trust the rabbis.’” I never heard Mr. Weisman's refrain from his own lips. I never heard him say any words all. By the time I met him he was in a vegetative state, a man on the precipice of invisibility—white hair, thin pale limbs, melting into sheets of the same color. When I think about Mr. Weisman, I see empty spaces—the absence of his voice, the too-large bed for his shrinking frame, (...) the always-empty chair by his bedside, and most of all, the myriad gaps in his life story. He was what in hospitals is often called a “patient alone”: someone who lacks decisional capacity and has no surrogate to make medical decisions for him. Mr. Weisman's aloneness prompted his primary team to consult our bioethics service in order to formulate goals of care for him, including the possibility of hospice care. (shrink)

Mrs. Clark's case was an ordinary consult in an extraordinary time. She was refusing dialysis, but the psychiatric unit had concluded that she lacked capacity for such decision‐making. The only difference between Mrs. Clark's current hospitalization and the last two was that it was April 2020 and a virus called Covid‐19 had overtaken our hospital. As the chief of Montefiore Medical Center's bioethics service, when I received a consult before the virus, I always saw the patient. Whether the patient had (...) been in a vegetative state for a day or for years, it didn't matter. I would lay my hand on a leg or an arm and observe. But Covid‐19 enforced physical boundaries between my team and our patients; I would not be able to meet Mrs. Clark. Our hospital responded to the attack on human connection by getting creative. We asked ourselves, which tools are still available to us? Answering this involved, in part, finding new ways for our team of clinical ethicists to support the clinicians caring for Mrs. Clark. (shrink)

A good death is hard to find. Family members tell us that loved ones die in the wrong place—the hospital—and do not receive high-quality care at the end of life. This issue of the Hastings Center Report offers two articles from authors who strive to provide good end-of-life care and to prevent needless suffering. We agree with their goals, but we have substantial reservations about the approaches they recommend. Respect for the decisions of patients and their surrogates is a relatively (...) new and still vulnerable aspect of medical care. For thousands of years, patients and surrogates had no say in medical decision-making. Today, standards support shared decision-making, but these articles both carve out exceptions to those standards, limiting the rights of patients and families in decisions about specific end-of-life treatments. As bioethics consultants in an acute care setting, we frequently confront conflicts similar to those described by Jeffrey Berger and by Ellen Robinson and colleagues. In such cases, our service emphasizes redoubled efforts at communication and mediation. Focusing on goals and values, rather than interventions, produces the best possible collaboration in health care decision-making. Cases in which we would overturn a surrogate's recommendations regarding palliative sedation or do-not-resuscitate orders are rare and require careful processes and clear evidence that the surrogate's choice is contrary to patient values. (shrink)

The OpenNotes (ON) mandate in the 21st Century Cures Act requires that patients or their legally authorized representatives be able to access their medical information in their electronic medical record (EMR) in real time. Ethics notes fall under the domain of this policy. We argue that ethics notes are unique from other clinical documentation in a number of ways: they lack best-practice guidelines, are written in the context of common misconceptions surrounding the purpose of ethics consultation, and often answer questions (...) of a different nature than other documentation. Thus, we believe the clinical ethics community would benefit from clarification on when the withholding of ethics notes is justified. We provide recommendations for excluding information from ethics documentation based on the likelihood and magnitude of harm that may occur with particular disclosures and suggest approaches to decrease the potential harms that may occur. We define and explain six types of reasons to exclude information from ethics notes based on significant harms that are not addressed in the ON policy: (1) harmful revelations from a protected chart note; (2) negative emotional effects on patients or families; (3) the purpose of the consultation is undermined by harmful consequences; (4) avoidable negative impact on interpersonal dynamics; (5) inappropriate labeling or disclosure of medical, social, or financial information; and (6) inclusion of biasing or otherwise unfair information. We also suggest approaches to mitigate harm when excluding, including, reframing, or delaying release of information that is perceived to be relevant to an ethics case. Overall, we hope our analysis and recommendations will initiate a much-needed discussion about the impact of the ON mandate on clinical ethics documentation. (shrink)

The importance of legal epidemiology in public health law research has undoubtedly grown over the last five years. Scholars and practitioners together have developed guidance on best practices for the field, including: placing emphasis on transdisciplinary collaborations; creating valid, reliable, and repeatable research; and publishing timely products for use in decision-making and change. Despite the energy and expertise researchers have brought to this important work, they name significant challenges in marshalling the diverse skill sets, quality controls, and funding to implement (...) legal epidemiology activities. The Centers for Disease Control and Prevention has worked to develop cross-cutting research and translation on issues of national priority in legal epidemiology, and has explored ways to overcome some of these challenges. As such, this article describes a case study of the use of law to characterize states' prior authorization policies regarding medication used to treat attention-deficit/hyperactivity disorder, a central component of a broader effort to improve behavior therapy options for young children with ADHD. This article highlights the types of legal epidemiology work we have undertaken, the application of this work to an emerging public health problem, and the lessons learned in creating impactful research for the field. (shrink)

Federal, state, and local laws shape the use of health information for public health purposes, such as the mandated collection of data through electronic disease reporting systems. Health professionals can leverage these data to better anticipate and plan for the needs of communities, which is seen in the use of electronic case reporting.

Broadband internet access is a super-determinant of health that plays an important role in healthcare and public health outcomes. Laws and policies shape implementation and use of broadband for healthcare and public health. Connecting broadband and telehealth laws with their health impacts, through legal epidemiological research, enables states to make evidence-based decisions to improve health outcomes for underserved populations.

In lieu of an abstract, here is a brief excerpt of the content:158 Feminist Studies 46, no. 1. © 2020 by Feminist Studies, Inc. María Fernanda Olarte-Sierra and Tania Pérez-Bustos Careful Speculations: Toward a Caring Science of Forensic Genetics in Colombia Feminist Science and Technology Studies (STS) has recently opened up the question of care as a set of practices related to the sustainability of life.1 The field of feminist studies more broadly has extensively 1. This literature mostly comes from (...) Northern contexts and started to flourish with the seminal work of María Puig de la Bellacasa, “Matters of Care in Technoscience: Assembling Neglected Things,” Social Studies of Science 41, no. 1 (2010): 85–106. This essay gathers scattered feminist STS reflections on these issues and looks at them through the lens of care, including authors such as Susan Leigh Star, Donna Haraway, Isabelle Stengers, Hilary Rose, and Annemarie Mol. The concept of care orienting this exercise of rereading these authors is proposed by Berenice Fisher and Joan Tronto, “Toward a Feminist Theory of Caring,” in Circles of Care: Work and Identity in Women’s Lives, ed. Emily K. Abel and Margaret K. Nelson (Albany: State University of New York Press, 1990), 35–62. Before and after that essay came out, Puig de la Bellacasa published several other papers related to this issue, including “Touching Technologies, Touching Visions. The Reclaiming of Sensorial Experience and the Politics of Speculative Thinking,” Subjectivity 28, no. 1 (2009): 297–315; “‘Nothing Comes without Its World’: Thinking with Care,” The Sociological Review 60, no. 2 (2012): 197– 216; “Ethical Doings in Naturecultures,” Ethics, Place & Environment 13, no. 2 (2010): 151–69; “Making Time for Soil: Technoscientific Futurity and the Pace of Care,” Social Studies of Science 45, no. 5 (2015): 691–716; and Matters of Care: Speculative Ethics in More than Human Worlds (Minneapolis: University of Minnesota Press, 2017). All these publications have been widely cited by other authors, particularly in a special issue of Social Studies of Science on the politics of care published in 2015 (volume 45, issue 5). Other examples María Fernanda Olarte-Sierra and Tania Pérez-Bustos 159 studied how care, and associated practices such as transnational care chains, are feminized and precarious—involving an ethos embodied by those who actively work to maintain or preserve another’s life. Feminists have focused on the politics of care embedded in invisible jobs related to aesthetics, domestic work, child and elder care, and sexual activities and see all these tasks as related to the reproduction of life and culture.2 Central to this conceptualization of care is the understanding that these jobs are typically women’s work. There is a common association between this care and notions of “motherhood” as it relates to values such as compassion, love, and respect, which have been constructed as universally feminine. However, the main goal of feminist studies of care has been to deconstruct this association, particularly because it is imbued with the white, wealthy, heteronormative ideal of femininity that underlies a gendered division of labor. The reality is that class, race, nation, and gender determine who cares for whom, whether or not labor is paid, and to what extent care is exploitative. One strand of recent research problematizes both valorizing and criticizing care practices on the grounds that they are based on a rather homogeneous understanding of the feminine. Instead, these scholars seek to resurrect valuable feminist work without relying on essentialism of authors contributing to this discussion on care as an ethos for science include Ruth Müller and Martha Kenney, “Agential Conversations: Interviewing Postdoctoral Life Scientists and the Politics of Mundane Research Practices,” Science as Culture 24, no. 4 (2014): 537–59; Charis Thompson, Good Science: The Ethical Choreography of Stem Cell Research (Cambridge, MA: MIT Press, 2013); and Carrie Friese, “Realizing Potential in Translational Medicine: The Uncanny Emergence of Care as Science,” Current Anthropology 54 (S7): S129-S138. 2. From Latin America, see, for example, Luz Gabriela Arango Gaviria, Adira Amaya Urquijo, Tania Pérez-Bustos, and Javier Pineda Duque, eds., Género y cuidado: teorías, escenarios y políticas (Bogotá: Universidad Nacional de Colombia, 2018); Pascale Molinier and Luz Grabriela Arango Gaviria, eds., El trabajo y... (shrink)