Intractable conflicts over end-of-life decisions: A descriptive and ethical analysis of French case-law.

Context: In European and Anglo-Saxon countries, life-sustaining treatment (LST) limitation decisions precede more than 80% of ICU deaths. However, there is now increasing evidence of disagreement and conflict between clinical teams and family members over LST limitation decisions. In some cases, these conflicts are brought to the courts.

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.

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.

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.

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.

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.

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.

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.

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

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. We examined the current state of clinician perspective on communication with families of dying children in the PICU. Prospective case series over a 15-month study period.

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.

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.

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.

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.

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.

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.

What Is Bioethics Worth?

What is bioethics to do when it strives to assess the quality of its research and scholarship and when it needs to justify its work to prospective funders, especially a funder like the National Institutes of Health that privileges empirical discovery? In "A Conceptual Model for the Translation of Bioethics Research and Scholarship," Debra Mathews and colleagues take an important first step at advancing an answer. The authors describe what they call a translational process, whereby bioethics "outputs" are translated into changes of three types: in thinking, practice, and policy. It goes nearly without saying that bioethics research and scholarship must be held accountable for changes in thinking.

The Ethical Imperative And Moral Challenges Of Engaging Patients And The Public With Evidence.

Engaging patients and the public with evidence is an ethical imperative because engagement is central to respect for persons and will likely improve health outcomes, facilitate the stewardship of resources, enhance prospects for justice, and build public trust. However, patient and public engagement is also morally complex, because evidence alone is never definitive. As patients and the public engage with evidence, value conflicts will arise and must be managed to achieve trustworthy decision making.

The Pedagogical Challenges of Teaching High School Bioethics: Insights from the Exploring Bioethics Curriculum.

A belief that high school students have the cognitive ability to analyze and assess moral choices and should be encouraged to do so but have rarely been helped to do so was the motivation for developing Exploring Bioethics, a six-module curriculum and teacher guide for grades nine through twelve on ethical issues in the life sciences. A multidisciplinary team of bioethicists, science educators, curriculum designers, scientists, and high school biology teachers worked together on the curriculum under a contract between the National Institutes of Health and Education Development Center, a nonprofit research and development organization with a long history of innovation in science education. At the NIH, the Department of Bioethics within the Clinical Center and the Office of Science Education within the Office of the Director guided the project.