Diagnosing Shosha: literature as a lens to view disease and history.

In recent decades, physicians have diagnosed fictional and non-fictional characters through portraits, biographies and writing. We argue that such an exercise can be beneficial for a uniquely health humanities reason-better understanding of our current world and the social determinants of health. Drawing on the method of health and social justice studies, we explore the character of Shosha, who appears repeatedly in the writings of Nobel Prize winner Isaac Bashevis Singer. Singer's strong story-telling skill and commitment to writing about the Jewish communities of prewar Poland in vivid detail preserve a slice of history, ensure that future generations will better understand what was destroyed by Nazi extermination policies, and provide lessons for modern political, hunger and war threats to human health. Shosha suffers from a lifelong debilitating disease that neither Singer nor subsequent commentaries ever name. The authors focus first on diagnosing the disease by consulting medical literature and experts. They then examine the value and pitfalls of this exercise and suggest that the lessons of understanding the disease historically, for teaching physicians how to recognise diseases rooted in war and poverty, and for enlightening all of us to the risks faced in human health by a world increasingly taking up arms and sliding towards fascism make diagnosing Shosha necessary and meaningful.

Evolution in Health and Medical Humanities education: a proposal for accreditation.

The growth of Health and Medical Humanities baccalaureate and master's degrees in recent decades makes the present moment ideal for initiating field-defining conversations among health humanities constituents about the boundaries of this transdisciplinary field. Focusing on accreditation at the programme level rather than the individual level, we explore four models with different advantages for Health and Medical Humanities: a certification for practice; a network (umbrella organisation); a programme of merit (POM) model; and consultancy. We conclude that for a young field like health humanities that is transdisciplinary, does not have an established canon and does not lead to entry to a specific professional path (ie, gatekeeping), the POM model is the best fit. In contrast to a full accreditation model, POM credentialling leaves room for creativity, expansiveness, and diversity of approaches and will not restrict programmes from calling themselves health humanities programmes; POM enhances visibility rather than decides who can teach in the field and what they must teach. To implement this model, we suggest the creation of a semi-independent Health and Medical Humanities Program Accreditation Commission (HMHPAC) that would be administered by the Health Humanities Consortium. The HMHPAC should have three goals: ensure that health humanities educational programmes are of the highest quality, assist programmes in acquiring the resources they need from their institutions and help programmes attract potential students.

Bring Out Your (Sort-of, Mostly, All) Dead: Should Those Dead by Neurological Criteria Be Research Subjects?

In the fall of 2021 a news story reported of a successful experimental xenotransplant of a genetically engineered pig kidney in to the circulatory system of a research subject who was dead by neurological criteria. Although not a first of its kind, this case raises the issue of the ethics of research on those declared brain dead. Such possibilities have been discussed in the published literature since 1974, when Willard Gaylin expressed concern over human dignity when he imagined hospital wards filled with "neomorts" used for education, teaching, research, and manufacturing. In this essay, the author explores the nuances of whether such subjects are considered alive, dead, or something in between. Notions of consent/permission and risk/benefit are determined by this categorization. After discussing the 2005 Consensus Panel Guidelines on Research with the Recently Dead, the essay concludes with the need for a liminal state between living and dead that respects human dignity but also recognizes the utilitarian value of such experiments to protect fully alive humans. Having not just guidelines but oversight structures such as the University of Pittsburgh's Committee for Oversight of Research Involving the Dead (CORID) and regulations are necessary if such work is to become more common.

The Ethics of Smart Pills and Self-Acting Devices: Autonomy, Truth-Telling, and Trust at the Dawn of Digital Medicine.

Digital medicine is a medical treatment that combines technology with drug delivery. The promises of this combination are continuous and remote monitoring, better disease management, self-tracking, self-management of diseases, and improved treatment adherence. These devices pose ethical challenges for patients, providers, and the social practice of medicine. For patients, having both informed consent and a user agreement raises questions of understanding for autonomy and informed consent, therapeutic misconception, external influences on decision making, confidentiality and privacy, and device dependability. For providers, digital medicine changes the relationship where trust can be verified, clinicians can be monitored, expectations must be managed, and new liability risks may be assumed. Other ethical questions include direct third-party monitoring of health treatment, affordability, and planning for adverse events in the case of device malfunction. This article seeks to lay out the ethical landscape for the implementation of such devices in patient care.

Assessing Advance Care Planning: Examining Autonomous Selections in an Advance Directive.

We examined the management of completed advance directives including why participants completed a document, what procedures and values they chose, with whom they held end-of-life conversations, and where they stored their document. Participants elected to complete a SurveyMonkey survey that was made available to individuals who wrote an advance directive through TexasLivingWill.org; 491 individuals elected to fill out the survey, aged 19 to 94 years. The survey asked multiple questions about why participants completed an advance directive, where they would store it, and with whom they had conversations about their end-of-life wishes. A list of procedures and values allowed participants to indicate what they refused or requested in their advance directive. Advance directives are most often completed to allow patients to prepare and control the healthcare they wish to receive when dying. One-half to two-thirds of individuals refuse common end-of-life medical procedures, and the rest request the procedures. We found a correlation between the choice to refuse or request a procedure and the age of the participant. Participants reported that their end-of-life conversations most often occurred with their spouse. Respondents often reported that their advance directive was stored with their physician and power of attorney for healthcare, conversations with those individuals rarely happened. Advance directives document patients' requests for and refusals of end-of-life care. Physicians and surrogates need to be better educated so that the documents are part of a meaningful conversation with the patient. Because patients' choices change over their lifespan, these documents need to be revisited regularly and not completed as a onetime event.

Health Humanities: A Baseline Survey of Baccalaureate and Graduate Programs in North America.

The authors conducted a baseline survey of baccalaureate and graduate degree health humanities programs in the United States and Canada. The object of the survey was to formally assess the current state of the field, to gauge what kind of resources individual programs are receiving, and to assess their self-identified needs to become or remain programmatically sustainable, including their views on the potential benefits of program accreditation. A 56-question baseline survey was sent to 111 institutions with baccalaureate programs and 20 institutions with graduate programs. Respondents were asked about three areas: (1) program administration (managing unit, paid director, faculty lines, paid staff, funding sources); (2) educational program (curricular structure, CIP code usage, completion rates); and (3) views on accreditation for the field. A clear majority of respondents agreed that some form of accreditation or consultation service could address resource and sustainability issues. Overall, the survey responses to staffing, curricular structure, and support suggest the need for developing a sustainable infrastructure for health humanities.

Principles for the ethical analysis of clinical and translational research.

Statistical analysis is a cornerstone of the scientific method and evidence-based medicine, and statisticians serve an increasingly important role in clinical and translational research by providing objective evidence concerning the risks and benefits of novel therapeutics. Researchers rely on statistics and informatics as never before to generate and test hypotheses and to discover patterns of disease hidden within overwhelming amounts of data. Too often, clinicians and biomedical scientists are not adequately proficient in statistics to analyze data or interpret results, and statistical expertise may not be properly incorporated within the research process. We argue for the ethical imperative of statistical standards, and we present ten nontechnical principles that form a conceptual framework for the ethical application of statistics in clinical and translational research. These principles are drawn from the literature on the ethics of data analysis and the American Statistical Association Ethical Guidelines for Statistical Practice.

To Be or Not: A Brief History of the Health Humanities Consortium.

The Health Humanities Consortium (HHC) was established in 2015 to "promote health humanities scholarship, education, and practice through transdisciplinary methods and theories that focus on the intersection of the arts and humanities, health, illness, and healthcare." As the founding co-chairs of the HHC, we provide a history of the founding of this organization in this article, describing the journey of its creation, the choices and challenges it faced as a new organization, and our hopes for a rich future.

Developing New Academic Programs in the Medical/Health Humanities: A Toolkit to Support Continued Growth.

Academic programs in the medical/health humanities have proliferated widely in recent years, and the professional, academic, and cultural drivers of this growth promise sustained new program development. In this article, we present the results of a survey sent to representatives of one hundred twenty-four baccalaureate and ten graduate programs in the medical/health humanities to assess the experiences and needs of existing programs. Survey results confirm the interest in and need for a descriptive toolkit as opposed to a prescriptive manual; indicate what data and materials are most needed to support the successful development of new academic programs in the field; and identify areas for future research. Recognizing a need for program development resources, the Health Humanities Consortium (HHC) has initiated the creation of a comprehensive online toolkit. We discuss survey results and the toolkit in relation to the drivers of new program growth. Finally, we describe resources now available through the HHC's new online program toolkit, including existing programs; sample syllabi; sample curricula templates; program rationale; proposal templates; and graduation data.

Care Delivery and Treatment Decision Making: Bioethical and Nursing Considerations During and After the COVID-19 Pandemic.

BACKGROUND: The disruption in the supply chain of resources and interruptions in cancer treatments caused by the pandemic presented tremendous challenges to the healthcare system. OBJECTIVES: This article describes the National Academy of Medicine-defined states of medical and nursing care delivery for which local plans should be drawn and the shifting and evolving systems framework that can guide decisions to optimize the crisis standards of care. METHODS: A case study is presented to describe the process of shifting the state of medical and nursing care delivery and bioethical nursing considerations during the pandemic and beyond. FINDINGS: An evolving and shifting systems framework for crises rooted in deontology, principlism, and the ethics of care model provide meaningful guidance for establishing priorities for patient care.