Research with Refugee Populations in North America: Applying the NIH Guiding Principles for Ethical Research.

This article examines the ethics of research design and the initiation of a study (e.g., recruitment of participants) involving refugee participants. We aim to equip investigators and members of IRBs with a set of ethical considerations and pragmatic recommendations to address challenges in refugee-focused research as it is developed and prepared for IRB review. We discuss challenges including how refugees are being defined and identified; their vulnerabilities before, during, and following resettlement that impacts their research participation; recruitment; consent practices including assent and unaccompanied minors; and conflicts of interest. Ethical guidance and regulatory oversight provided by international bodies, federal governments, and IRBs are important for enforcing the protection of participants. We describe the need for additional ethical guidance and awareness, if not special protections for refugee populations as guided by the National Institutes of Health (NIH) Guiding Principles for Ethical Research.

Supporting and Contextualizing Pediatric ECMO Decision-Making Using a Person-Centered Framework.

AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics.

Feasibility and Acceptability: Narrative Writing with Caregivers in Pediatric Critical Care.

Background: Pediatric intensive care unit (PICU) admissions are caregiver stressors with potential long-term impact. Writing interventions have shown health benefits, although not yet with parents writing during their child's PICU admission. Objective: The study objective was to quantify intervention acceptability and feasibility and to qualitatively examine written texts. Design: This is a proof-of-concept three-arm randomized trial. Setting and Subjects: Subjects were legal caregivers ≥18 years, able to read and write English, and of children ≤18 years in a U.S. PICU for ≥1 day. Measurements: Treatment Acceptability Questionnaire, enrollment rates, completed encounters, and qualitative thematic analysis. Results: Acceptability was high (49% enrollment; mean [standard deviation] Treatment Acceptability Questionnaire scores: M = 24.8 [2.4]). Feasibility was 100% scheduled-to-completed sessions. Thematic analysis revealed two themes (people and relationships); texts were more cognitive than emotional. Conclusions: Caregivers, provided resources and supported by a narrative medicine facilitator, are likely to engage in expressive writing. The intervention warrants subsequent development.

Examining Illness through Pediatric Poetry and Prose: A Mixed Methods Study.

The purpose of this mixed-methods retrospective study was to characterize the linguistic and narrative properties of texts generated by hospitalized pediatric patients who are experiencing significant illnesses. These young writers voluntarily participated in a narrative intervention through a program at a children's hospital that serves diverse urban and rural populations. The primary aim was to use interpretive theoretical analysis and linguistic analysis to test the following hypotheses: (1) hospital-generated texts have linguistic characteristics consistent with texts written to improve health outcomes; (2) stories told by pediatric patients through poetry and prose can be classified using Frank's illness narrative types, serving as a starting point to situate caregivers into the pediatric writer's world in a moment in time; (3) pediatric stories are authentic stories that yield important insights about patients and their relationships with others despite lacking formal narrative elements (e.g., plot) and form.

The Mental Health of Refugees during a Pandemic: Striving toward Social Justice through Social Determinants of Health and Human Rights.

This paper is the second of two in a series. In our first paper, we presented a social justice framework emerging from an extensive literature review and incorporating core social determinants specific to mental health in the age of COVID-19 and illustrated specific social determinants impacting mental health (SDIMH) of our resettled Bhutanese refugee population during the pandemic. This second paper details specific barriers to the SDIMH detrimental to the basic human rights and social justice of this population during this pandemic. The SDIMH, as described, further informs the need for social justice measures and cultural humility in mental healthcare, public health, law, and community engagement. This work concludes with a proposed call to action toward mental health improvement and fair treatment for refugee populations in three core areas: communication and education, social stigma and discrimination, and accessibility and availability of resources.

The Mental Health of Refugees during a Pandemic: The Impact of COVID-19 on Resettled Bhutanese Refugees.

This paper is the first of two in a series. In this paper, we identify mental health needs and challenges in the age of COVID-19 among Nepali-speaking, Bhutanese resettled refugees in the USA. We argue for a public health justice framework that looks critically at social determinants impacting mental health (SDIMH) barriers, which negatively impact our Bhutanese population, and serves as a theoretical foundation toward public policy and law that will inform healthcare decisions and fair treatment of resettled refugees at the clinical bedside and in the community. We first describe our Bhutanese refugee population and the critical mental health issues that, for many, originated during political persecution and violent ethnic cleansing initiatives, or while living in refugee camps prior to resettlement to the USA. We present a social justice framework emerging from an extensive literature review and incorporating core social determinants specific to mental health in the age of COVID-19, which are guided by the social determinants of economic stability; neighborhoods and physical environment; education; nutrition and exercise; community and social context; healthcare system; and legal system. We illustrate specific SDIMH of our resettled Bhutanese refugees during the pandemic, followed by a second paper that details recommendations for applying the SDIMH in a collective effort to address specific barriers to mental healthcare and support.

Surgeons' re-operative valve replacement practices in patients with endocarditis due to drug use.

BACKGROUND: This study discerns surgeons' attitudes and practices in the determination of heart valve replacement for patients with infectious endocarditis (IE) due to intravenous drug use (IVDU). We aimed to identify the factors contributing to surgeons' decision-making process for initial and recurrent surgical heart valves and the availability of institutional guidance. METHODS: An IRB-approved, anonymous mixed-methods, open survey instrument was designed and validated with 24 questions. A convenience sample of cardiothoracic surgeons in the United States and globally resulted in a total of 220 study participants with 176 completing every question on the survey. RESULTS: A cluster analysis revealed that although surgeons can be divided into subgroups based on their previous experience with valve replacements, these groups are not perfectly homogenous, and the number of identified clusters is dependent on technique used. Analysis of variance revealed the variables that most clearly divided the surgeons into subgroups were, in order of importance, years of practice, number of valve replacements, and geography. CONCLUSIONS: Our analysis showed heterogeneity among cardiothoracic surgeons regarding how they make clinical decisions regarding re-operative valve replacement related to IE-IVDU. Therefore, an opportunity exists for interprofessional teams to develop comprehensive guidelines to decrease variability in surgical decision-making regarding valve replacement associated with IE-IVDU.

Does Using Humor to Cope With Stress Justify Making Fun of Patients?

This article considers 3 reasons for derogatory humor in clinical settings and argues that when such humor is directed at patients without understanding their complex histories, it can diminish the therapeutic relationship rather than serve as a coping strategy. This article also investigates how narrative medicine can guide deeper understanding of the motivations for using humor in clinical settings, why humor is directed at a particular person or group, and why derogatory, cynical, or dark humor might be unethical and unprofessional. Colleagues and mentors are essential for guiding students' and trainees' professional development and for helping them cultivate coping strategies that do not cause harm.

How Should Health Care Professionals Address Social Determinants of Refugee Health?

In the case scenario, RJ is a resettled refugee teenager who presents to his physician with vitamin B12 deficiency, anemia, and symptoms of mental illness. This commentary considers social determinants of refugee health and the moral importance of freedom to achieve well-being. The capabilities framework is used to analyze this case because it offers an ethical framework for understanding and evaluating social determinants of refugee health that either promote or diminish freedom to achieve well-being. By using this framework to consider social isolation as a negative social determinant of refugee health, clinicians and institutions can be caregivers as well as advocates for social justice, fulfilling 2 core ethical obligations to refugee communities.

Remembering Freddie Gray: Medical Education for Social Justice.

Recent attention to racial disparities in law enforcement, highlighted by the death of Freddie Gray, raises questions about whether medical education adequately prepares physicians to care for persons particularly affected by societal inequities and injustice who present to clinics, hospitals, and emergency rooms. In this Perspective, the authors propose that medical school curricula should address such concerns through an explicit pedagogical orientation. The authors detail two specific approaches-antiracist pedagogy and the concept of structural competency-to construct a curriculum oriented toward appropriate care for patients who are victimized by extremely challenging social and economic disadvantages and who present with health concerns that arise from these disadvantages. In memory of Freddie Gray, the authors describe a curriculum, outlining specific strategies for engaging learners and naming specific resources that can be brought to bear on these strategies. The fundamental aim of such a curriculum is to help trainees and faculty understand how equitable access to skilled and respectful health care is often denied; how we and the institutions where we learn, teach, and work can be complicit in this reality; and how we can work toward eliminating the societal injustices that interfere with the delivery of appropriate health care.

Psychiatric Diagnostic Uncertainty: Challenges to Patient-Centered Care.

In this case and commentary, a patient's request to be treated for depression without a stigmatizing diagnostic label of bipolar II disorder challenges a clinician's obligation to provide a clinically and ethically appropriate diagnosis and safe treatment consistent with the patient's family medical history. Sensitively recognizing and responding to patients' concerns and values, even when they might conflict with the delivery of reasonable psychiatric care, is essential when gauging the appropriateness of such therapeutic practices. Furthermore, developing honest and open communication; recognizing that patients, like some psychiatric diagnoses, do not fit into discrete boundaries or cannot be categorized by a single label; and placing the patient at the center of care can all serve to resolve value conflicts, protect patient privacy, and promote accurate diagnostic and treatment practices.

Beyond privacy: benefits and burdens of e-health technologies in primary care.

In this mixed methods study we identify and assess ethical and pragmatic issues and dilemmas surrounding e-health technologies in the context of primary care, including what is already in the literature. We describe how primary healthcare professionals can access reliable and accurate data, improve the quality of care for patients, and lower costs while following institutional guidelines to protect patients. Using qualitative and quantitative methodologies we identify several underlying ethical and pragmatic burdens and benefits of e-health technologies.The 41 study participants reported more burdens than benefits, and were generally ambivalent about their level of satisfaction with their institutions' e-health technologies, their general knowledge about the technologies, and whether e-health can improve team-based communication and collaboration. Participants provided recommendations to improve e-health technologies in primary care settings.

Narrative analysis of the ethics in providing advance care planning.

Our objective was to better understand the values and ethical dilemmas surrounding advance care planning through stories told by registered nurses and licensed social workers, who were employed as care managers within Area Agencies on Aging. We conducted eight focus groups in which care managers were invited to tell their stories and answer open-ended questions focusing on their interactions with consumers receiving home-based long-term care. Using narrative analysis to understand how our participants thought through particular experiences and what they valued, we identified seven themes representative of their work with consumers and families: humility, respect, responsibilities, boundaries, empowerment, courage, and veracity.

Abuses and apologies: irresponsible conduct of human subjects research in Latin America.

This paper explores the vulnerability of Latin American human subjects, and how their vulnerability is ignored due to the complexities and inconsistencies of oversight committees and institutional policies. Secondly, the concept of apology is examined and its meaning to victims of past research abuses.

Don't let the bedbugs bite: the Cimicidae debacle and the denial of healthcare and social justice.

Although bedbug infestation is not a new public health problem, it is one that is becoming more alarming among healthcare professionals, public health officials, and ethicists given the magnitude of patients who may be denied treatment, or who are unable to access treatment, especially those underserved populations living in low income housing. Efforts to quarantine and eradicate Cimicidae have been and should be made, but such efforts require costly interventions. The alternative, however, can further exacerbate the already growing problems of injustice, i.e., unfair treatment of patients, inaccessibility of needed resources. In the following paper, I examine the ramifications of denying access to medical care, among other healthcare justice dilemmas surrounding bedbug infestations. I also explore the value of health, and how healthcare professionals and public officials often feel as though bedbugs are not a priority because they, themselves, are not diseases, regardless of the fact they cause physical and mental problems that affect a person's health. I propose recommendations for improving the health and well-being of those vulnerable populations who are facing a difficult and growing public health problem that is currently being ignored in medical and public health ethics literature, regardless of increased media attention and unusual habitats of localized infestations, e.g., Statue of Liberty, New York City.

Functions and outcomes of a clinical medical ethics committee: a review of 100 consults.

CONTEXT: Established in 1997, Summa Health System's Medical Ethics Committee (EC) serves as an educational, supportive, and consultative resource to patients/families and providers, and serves to analyze, clarify, and ameliorate dilemmas in clinical care. In 2009 the EC conducted its 100th consult. In 2002 a Palliative Care Consult Service (PCCS) was established to provide supportive services for patients/families facing advanced illness; enhance clinical decision-making during crisis; and improve pain/symptom management. How these services affect one another has thus far been unclear. OBJECTIVES: This study describes EC consults: types, reasons, recommendations and utilization, and investigates the impact the PCCS may have on EC consult requests or recommendations. METHODS: Retrospective reviews of 100 EC records explored trends and changes in types of consults, reasons for consults, and EC recommendations and utilization. RESULTS: There were 50 EC consults each in the 6 years pre- and post-PCCS. Differences found include: (1) a decrease in number of reasons for consult requests (133-62); (2) changes in top two reasons for EC consult requests from 'Family opposed to withdrawing life-sustaining treatment (LST)' and 'Patient capacity in question' to 'Futility' and 'Physician opposed to providing LST'; (3) changes in top two recommendations given by the EC from 'Emotional Support for Patient/Family' and 'Initiate DNR Order' to 'Comfort Care' and 'Withdraw Treatment.' Overall, 88% of recommendations were followed. CONCLUSION: PCCS availability and growth throughout the hospital may have influenced EC consult requests. EC consults regarding family opposition to withdrawing LST and EC recommendations for patient/family support declined.