Choice in the Context of Dementia: Emerging Issues for Health Care Practice in Aging Societies.

This introduction to the special report "Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives" explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age-associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other resources. The first essay is a landscape review written for health care professionals to support discussion, debate, and deliberation within professional societies and networks concerning a patient's voluntary choice to hasten their own death in the context of a dementia diagnosis. The landscape review is followed by three essays that suggest how several familiar concepts within care for persons with serious illness should be rethought to better support advance care planning, physician-patient conversations, and access to community-based palliative care and hospice when a person is facing dementia. The final essay presents a bold, practical argument for supporting better lives for people facing dementia, and for dementia caregivers, through primary care, the usual source of care for people with dementia.

Trust in Health Care and Science: Toward Common Ground on Key Concepts.

This essay summarizes key insights across the essays in the Hastings Center Report's special report "Time to Rebuild: Essays on Trust in Health Care and Science." These insights concern trust and trustworthiness as distinct concepts, competence as a necessary but not sufficient input to trust, trust as a reciprocal good, trust as an interpersonal as well as structural phenomena, the ethical impermissibility of seeking to win trust without being trustworthy, building and borrowing trust as distinct strategies, and challenges to trustworthiness posed by the contingent nature of science. Together, these insights stand to advance an area of research that we believe has been historically stymied by conceptual confusion and a long-standing insistence on treating trust as a purely instrumental good.

Recalibrating Bioethics for the Reality of Interdependence: The Challenge of Collective-Impact Problems.

Bioethics in the twenty-first century is confronting what one might call "collective-impact problems." The ethics guidance and policies that are developed to address these kinds of problems will affect not only individuals but everyone living and future generations too. With many collective-impact problems, all parties will eventually be worse off if there is a failure to develop solutions to head off damage to the shared environment. However, the effects are not felt equally throughout and across societies; some groups are hit far worse. To address collective-impact problems, bioethics needs to recalibrate. Our field, and especially American bioethics, should find a better balance between individual rights and the best interests of the group, develop more robust tools for examining structural inequities that damage people's health and well-being, and study how to engage the public in learning about and shaping ethics guidance for these complex problems.

Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems.

Patient and family engagement has been identified as key to fulfilling Learning Healthcare Systems' (LHSs') promise as a model for improving clinical care, catalyzing research, and controlling costs. Little is known, however, about the state of patient engagement in the learning mission of these systems or about what governance structures and processes facilitate such engagement. Here, we report on an interview study of 99 patient and employee leaders in 16 systems. We found both variable levels of engagement and broad agreement that shared governance of learning remains a work in progress. We also identified a range of practices that can support or thwart development of an organizational culture conducive to shared governance, including transparency, capacity building, infrastructure investment, leadership, attention to diversity of patient partners, and committee structures. In LHSs with most sophisticated shared governance, both employees and patients contribute to building a democratic learning culture.

Civic Learning for a Democracy in Crisis.

This essay introduces a special report from The Hastings Center entitled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose, which grew out of a project supported by the John S. and James L. Knight Foundation. This multiauthored report offers wide-ranging assessments of increasing polarization and partisanship in American government and politics, and it proposes constructive responses to this in the provision of objective information, institutional reforms in government and the electoral system, and a reexamination of cultural and political values needed if democracy is to function well in a pluralistic and diverse society. The essays in the special report explore the norms of civic learning and institutions, social movements, and communal innovations that can revitalize civic learning in practice. This introductory essay defines and explains the notion of civic learning, which is a lynchpin connecting many of the essays in the report. Civic learning pertains to the ways in which citizens learn about collective social problems and make decisions about them that reflect the duties and responsibilities of citizenship. Such learning can occur in many social settings in everyday life, and it can also be facilitated through participation in the processes of democratic governance on many levels. Civic learning is not doctrinaire and is compatible with a range of public goals and policies. It is an activity that increases what might be called the democratic capability of a people.

Recommendations for Better Civic Learning: Building and Rebuilding Democracy.

This is the concluding essay for a special report from The Hastings Center entitled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose, which grew out of a project supported by the John S. and James L. Knight Foundation. This essay provides an integrative discussion of various theoretical and practical reform perspectives offered by other essays in the report. It also offers a number of recommendations. It notes that the aim of the special report is not to propose specific reform measures but, rather, to consider larger, more theoretic concerns related to political and economic questions, which are personal and structural-psychological, cultural, and institutional-at the same time. In response, this essay argues that the best relationship between the citizenry and government in a democracy is not one of deference, nor one of contestation, but one that is critically constructive, which in turn is linked to practices of civic learning. To be constructive, citizens need scientific literacy, an understanding of how government and other institutions work, critical thinking abilities, and many open and diverse forums for civic learning to offset the increasingly isolating media "bubbles" that are the only source of information for many. The essay then formulates five recommendations designed to facilitate critically constructive citizenship and civic learning. These are creating a basis for civic participation, acquiring information, talking to each other, designing institutional change, and achieving deliberation.

Can Our Schools Help Us Preserve Democracy? Special Challenges at a Time of Shifting Norms.

Civic education that prepares students for principled civic participation is vital to democracy. Schools face significant challenges, however, as they attempt to educate for democracy in a democracy in crisis. Parents, educators, and policy-makers disagree about what America's civic future should look like, and hence about what schools should teach. Likewise, hyperpartisanship, mutual mistrust, and the breakdown of democratic norms are perverting the kinds of civic relationships and values that schools want to model and achieve. Nonetheless, there is strong evidence that young people want to be civically engaged and are hungry for more and better civic learning opportunities. Reviving the civic mission of schools is thus a win-win-win. Adults want it, youth want it, and democracy needs it. We propose three means by which educators and the public can reconstruct our common purpose and achieve civic innovation to help democracy in crisis: support action civics, strengthen youth leadership outside the classroom, and engage both students and adults with "hard history" and contemporary controversies.

Scarcity in the Covid-19 Pandemic.

As we write, U.S. cities and states with extensive community transmission of Covid-19 are in harm's way-not only because of the disease itself but also because of prior and current failures to act. During the 2009 influenza pandemic, public health agencies and hospitals developed but never adequately implemented preparedness plans. Focused on efficiency in a competitive market, health systems had few incentives to maintain stockpiles of essential medical equipment. Just-in-time economic models resulted in storage of only those supplies needed then. At the same time, global purchasing in search of lower prices reduced the number of U.S. suppliers, with hospitals dependent on foreign companies. There is still a possibility that the pandemic will be manageably bad rather than unmanageably catastrophic in this country. Immediate, powerful, and sustained federal action could make the difference.

Location of Clinician-Family Communication at the End of Life in the Pediatric Intensive Care Unit and Clinician Perception of Communication Quality.

Background: Communication between clinicians and families of dying children in the pediatric intensive care unit (PICU) is critically important for optimal care of the child and the family. Objective: We examined the current state of clinician perspective on communication with families of dying children in the PICU. Design: Prospective case series over a 15-month study period. Setting/Subjects: We surveyed nurses, psychosocial staff, and physicians who cared for dying children in PICUs at five U.S. academic hospitals. Measurements: Clinicians reported on the location of communication, perceived barriers to end-of-life care, and rated the quality of communication (QOC). Results: We collected 565 surveys from 287 clinicians who cared for 169 dying children. Clinicians reported that the majority of communication occurred at the bedside, and less commonly family conferences and rounds. Ten barriers to care were examined and were reported with frequencies of 2%-32%. QOC was rated higher when the majority of conversations occurred during family conferences (p = 0.01) and lower for patients of non-white race (p = 0.03). QOC decreased when 8 of the 10 barriers to care were reported. Conclusions: When a child is dying, clinicians report that communication with the family occurs most frequently at the child's bedside. This has important implications for future ICU communication research as the majority of previous research and education has focused on family care conferences. In addition, findings that QOC is perceived as lower for non-white patients and when clinicians perceive that barriers hindering care are present can help direct future efforts to improve communication in the PICU.

Crossing Boundaries.

I met Dan Callahan in 1986-when I came to pitch him. Coming from a sleek office setting near Boston, I was intrigued by The Hastings Center's higgledy-piggledy environment where so many smart people got to work in a relaxed, inviting atmosphere. I had noticed that the Center was producing a great deal of policy work on a wide range of topics but didn't seem to go further than publishing the highly valuable guidance developed under Dan Callahan's leadership. I ended my pitch, "Look, Dan, where Hastings gets bored and wants to go on to the next topic, my group in Boston gets interested." To my great pleasure, and despite his skepticism, Dan accepted the pitch. Beyond his generous responsiveness to unproven young people, Dan had many other virtues. For one, he was a boundary crosser.

A Last Gift.

Here at the Center, we had the privilege of seeing how Dan Callahan lived out his last days and weeks. True to his nature, Dan never stopped thinking or writing. Indeed, his wife Sidney told me that he finished his last essay one day before his death, on July 16th, insisting that she help him get to the computer so he could discuss it with a colleague. "It's my last one," he told her with his characteristic self-awareness. Dan also chose the last topic he would focus on: climate change. At a December 2018 board meeting, Dan presented his desire to develop a workshop to explore the ways in which bioethics in general, and The Hastings Center in particular, might be able to make a valuable contribution to addressing the problem of global warming.

Annual Award for an Essay by an Early-Career Scholar.

As part of the celebrations of The Hastings Center's fiftieth anniversary, we are launching an annual prize, The David Roscoe Award for an Early-Career Scholar's Essay on Science, Ethics, and Society. The award is named in honor of David Roscoe, an accomplished essayist and recent past chair of the Hastings board. The award is intended to highlight the good scholarship that will take the field of bioethics forward into the next fifty years. It will recognize an early-career scholar-someone who either is currently pursuing a relevant academic degree or has earned one within the last six years-for a published essay on the social and ethical implications of advances in science and technology. More information about the award, along with online submission forms, is available on The Hastings Center's website.

Patient-Centered Care, Yes; Patients As Consumers, No.

There are numerous calls for building health care delivery systems that are more patient centered. The focus on patient-centered care has increasingly begun to rely upon, and even merge with, the concept of patients as consumers. Early references to patients as consumers were made by patient advocates who were attempting to challenge professional and corporate dominance in health care. Today, "consumer-driven" health care has become associated with neoliberal efforts to emphasize market factors in health reform and deemphasize government regulation and financing. In our view, a narrow focus on consumerism is conceptually confused and potentially harmful. The consumer metaphor wrongly assumes that health care is a market in the usual understanding of that term, that the high cost of US health care is a function of excessive consumer demand, and that price transparency and competition can deliver on the promise of reducing costs or ensuring quality. Furthermore, a consumer metaphor places disproportionate burdens on patients to reduce health care costs, and it could erode professional obligations to provide appropriate and effective care.

Brain Death at Fifty: Exploring Consensus, Controversy, and Contexts.

This special report is published in commemoration of the fiftieth anniversary of the "Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death," a landmark document that proposed a new way to define death, with implications that advanced the field of organ transplantation. This remarkable success notwithstanding, the concept has raised lasting questions about what it means to be dead. Is death defined in terms of the biological failure of the organism to maintain integrated functioning? Can death be declared on the basis of severe neurological injury even when biological functions remain intact? Is death essentially a social construct that can be defined in different ways, based on human judgment? These issues, and more, are discussed and debated in this report by leading experts in the field, many of whom have been engaged with this topic for decades.

Becoming Good Citizens of Aging Societies.

The ethical dimensions of an aging society are larger than the experience of chronic illness, the moral concerns of health care professionals, or the allocation of health care resources. What, then, is the role of bioethics in an aging society, beyond calling attention to these problems? Once we've agreed that aging is morally important and that population-level aging across wealthy nations raises ethical concerns that cannot be fixed through transhumanism or other appeals to transcend aging and mortality through technology, what is our field's contribution? We argue that it is time for bioethics to turn toward social justice and problems of injustice and that part of doing so is articulating a concept of good citizenship in an aging society that goes beyond health care relationships.

Breakthrough Cancer Treatments Raise Difficult Questions.

The approval of a first-of-its kind cancer therapy creates new challenges related to safety, access, and costs.

Bioethics and Populism: How Should Our Field Respond?

Across the world, an authoritarian and exclusionary form of populism is gaining political traction. Historically, some populist movements have been democratic and based on a sense of inclusive justice and the common good. But the populism on the rise at present speaks and acts otherwise. It is challenging constitutional democracies. The polarization seen in authoritarian populism goes beyond the familiar left-right political spectrum and generates disturbing forms of extremism, including the so-called alternative right in the United States and similar ethnic and nationalistic political movements in other countries. The field of bioethics will be profoundly affected if authoritarian populism displaces constitutional democracy. But the field has a significant contribution to make to rebuilding the communal and civic foundations upon which constitutional democracy rests.

On Patient Well-being and Professional Authority.

Two papers in this issue address the limits of surrogates' authority when making life-and-death decisions for dying family members or friends. Using palliative sedation as an example, Jeffrey Berger offers a conceptual argument for bounding surrogate authority. Since freedom from pain is an essential interest, when imminently dying, cognitively incapacitated patients are in duress and their symptoms are not manageable in any other way, clinicians should be free to offer palliative sedation without surrogate consent, although assent should be sought and every effort made to work with surrogates as harmoniously as possible. Ellen Robinson and her colleagues report on the implementation of a policy at Massachusetts General Hospital that supports do-not-resuscitate orders when cardiopulmonary resuscitation is likely to be ineffective or harmful, even if surrogates disagree. The "Doing No Harm" policy at MGH allows for what MGH calls a "medically indicated DNR" and what in some other places is called "a unilateral DNR"-the writing of an order not to provide cardiopulmonary resuscitation, regardless of surrogate disapproval. These kinds of DNR policies have emerged in some hospitals across the country and for much the same reason that Berger provides in his argument regarding palliative sedation. I support the reasoning and the policies in both the Berger and Robinson papers. However, as the authors would most likely agree, the problems they aim to remedy are not simply about the scope of surrogate and professional authority. They are also symptoms of inattention to professional obligations and system failures.