Research Area: Clinical Ethics

Faculty Receive Discovery Award for Project Highlighting Children with Medical Complexity

“‘Feels Like Home’: Lived Experiences of Children with Medical Complexity and Their Families,” an interactive audiovisual experience that will bring multiple audiences into the homes of children with medical complexity (CMC) and their families, has been named the recipient of a 2024 Discovery Award given to interdisciplinary faculty teams across Johns Hopkins University.

Led by Rebecca Seltzer, Assistant Professor of Pediatrics at the School of Medicine, and Lauren Arora Hutchinson, Director of the Dracopoulos-Bloomberg iDeas Lab at the Berman Institute of Bioethics, the project will result in three distinct outputs:

  •  An audio documentary intended for broad public audiences that explores how families with CMC experience their home environment, a unique blend of hospital and traditional home;
  •  A short film to immerse the viewers in how families with CMC adapt/build their home environment to meet their child and family’s needs, capturing both challenges and ingenuity;
  • An interactive website to house the multimedia created and collected through this project.

“We envision the audio documentary and short film to be used on broader scales as teaching and advocacy tools. This could include incorporating them in medical provider training programs; using them as central discussion elements at conferences, panels, and live events; sharing short snippets in policy-making spaces,” said Dr. Seltzer.

The interactive website created during the initial phase will begin as a dynamic hosting platform for the audio and video deliverables and grow over time into a hub where audiences come to get resources and share their own stories.
The Discovery Awards encourage faculty from various disciplines to collaborate in addressing multifaceted challenges and pushing the boundaries of understanding. Altogether, the winning project teams—chosen from 286 proposals—include 148 individuals representing 11 Johns Hopkins entities.

“This project is an example of how the iDeas Lab can work with faculty from the outset of a project to envision and create outputs that will reach and immerse audiences beyond academia, getting them to think deeply and differently about topics,” said Arora Hutchinson. “The Lab has a team of creative producers – specialists in audio, video, and digital media who produce podcasts, videos, screenplays, films, and interactive projects – who look forward to creatively engaging with families with lived experiences on this important matter and making sure their unique perspectives are heard and shared.”

In addition, Abigail Brickler, a production assistant at the iDeas Lab, has experience as the caregiver of a parent with medical complexity and brings that important perspective to this project. Other key partners on the project include parent caregivers of children with medical complexity and the Johns Hopkins Disability Health Research Center.

“This project’s deliverables are both public-facing and family-centered, which we hope will foster feelings of community amongst similarly-situated families and promote a shared sense of humanity amongst audiences who perhaps were previously unaware,” said Seltzer.

Overcoming Barriers of Language and Literacy in Neonatal Intensive Care

As physicians in the Johns Hopkins Hospital Neonatal Intensive Care Units (NICUs), Renee Boss and Sara Munoz-Blanco know their patients’ outcomes following discharge are often directly linked to effective communication with parents. Making the transition from hospital to home can be overwhelming and frightening for any parent, and even more so when the parents can’t effectively ask questions or receive information because of a language barrier.  

To help address this problem among Latinos, the fastest-growing ethnic group in both Maryland and the United States, Boss and Munoz-Blanco collaborated with the Dracopoulos-Bloomberg iDeas Lab at the Johns Hopkins Berman Institute of Bioethics to develop “Nos Vamos a Casa,” (which translates as “We Are Going Home”) a novel web-based interface that enables patient families and their doctors to overcome barriers of language and literacy to exchange vital information.  

“We care for a substantial number of Latino Spanish-speaking children and their families across our healthcare system who often have medical complexity and ongoing healthcare needs after NICU discharge,” said Boss, the Rembrandt Foundation Professor of Pediatric Palliative Care at Johns Hopkins University School of Medicine, and a Berman Institute faculty member. 

“Our tool will increase a family’s knowledge about their child’s medical big picture, being a NICU parent, and preparedness of anticipated challenges after NICU discharge. We believe it will help improve communication between families and medical teams during their admission, promote family-centered care, as well as better prepare families for life at home.” 

Available at the patient’s bedside, “Nos Vamos a Casa” contains a question prompt list (QPL) that Boss and Munoz-Blanco developed in a pilot study by conducting focus groups with NICU and primary care providers, as well as Spanish-speaking parents of NICU patients. As parents review the QPL, accessible in Spanish in both print and audio, they can flag the questions they need to have addressed. Members of their care team, including doctors, nurses, case managers and social workers, then access that list of highlighted questions electronically, in either English and Spanish, and use it as a guide for discussion with parents.  

“During our pilot study, providers found the QPL helpful. Families reported they would use our tool and would recommend it to other Latino families in the NICU. In addition, they reported the tool would help them to prepare for life at home, make it easier to ask questions, to think about questions, and even put their concerns into words,” said Munoz-Blanco, an Assistant Professor of Pediatrics in the School of Medicine and the project’s principal investigator. “But there were still literacy barriers and we wanted to have an interactive, user-friendly web-based audio interface that would make both families and physicians more likely to use the QPL.” 

Supported by a JHU Innovation Grant and grant from the Thomas Wilson Sanitarium for the Children of Baltimore City, Boss and Munoz-Blanco worked with the Berman Institute’s Dracopoulos-Bloomberg iDeas Lab to create the solution they envisioned. Launched in 2022, the iDeas Lab is a creative studio utilizing new technologies and storytelling techniques to help bioethicists at Johns Hopkins share their work with the general public in more effective and engaging ways. “Nos Vamos a Casa” is the first QPL ever to be designed in audio format, and its user-friendliness was intentional and essential to overcome potential literacy barriers.

“This has been a very rewarding project for the iDeas Lab. We collaborated with the researchers from the outset, helping them identify the right communications vehicle then working with them throughout the development process to get the best possible result for families as well as their doctors and other care providers,” said Lauren Arora Hutchinson, Director of the Dracopoulos-Bloomberg iDeas Lab.

“While we are really proud of other public-facing projects we have done, such as podcasts with hundreds of thousands of listens, we found it inspiring to work on this tool which had such a specific audience. Renee and Sara’s earlier research had demonstrated the need to create a tool for supporting parents at such a crucial period of their life, so using technology and storytelling to find a solution to this communication issue was important to our values as a creative lab.”

To provide the Spanish-language audio narration, the team turned to a Spanish-speaking parent. As the tools were being developed, a consultation session was held with members of Baltimore’s Latino community through Centro SOL (Salud y Oportunidades for Latinxs) to ensure they were not only useful but also culturally appropriate.

Earlier this year, families and medical teams at Johns Hopkins Children’s Center began using “Nos Vamos a Casa.” Preliminary data is very promising. For example, almost 60% of families reported discussing website questions with their baby’s medical team and reported initiating those conversations. All families reported the website content helped them cope with being a NICU parent, thinking of and asking questions to the medical team, and preparing for life at home.

Research is ongoing. Boss and Munoz-Blanco hope to share it with families and NICUs across the country, at first in Spanish and then in other languages as well.

“We’re doing implementation science,” said Boss. “It’s not just studying patients and families, it’s doing medical research that will benefit those patients and families and then making sure it’s available to them.”

Berman Institute of Bioethics Launches New Podcast “playing god?” with Pushkin Industries

In recent years, we have collectively witnessed a rapid development of medical breakthroughs with the potential to transform and save lives. With such powerful advancements, though, often come thorny questions. The Berman Institute of Bioethics at Johns Hopkins University and Pushkin Industries have teamed up to create playing god?, a new podcast that shares the deeply personal — and incredibly moving — stories of people caught at the life-and-death crossroads of medical innovations and ethical dilemmas.

Launching October 10, 2023, this ten-episode series is hosted by award-winning audio storyteller and BBC alumna Lauren Arora Hutchinson, Director of the Berman Institute’s Dracopoulos-Bloomberg iDeas lab. Arora-Hutchinson introduces listeners to real people faced with dire circumstances: a burn victim kept alive by a ventilator while family and friends fought over whether to allow her to die; a bar manager in immediate need of a liver transplant who faced a long-accepted and previously unquestioned practice of a six-month waiting period for liver failure due to excessive alcohol use; a mother hoping against hope that a new combination of reproductive technologies might bring her a healthy child who was also a genetic match for her child suffering from a fatal genetic disease. Decisions that may seem objectively clear-cut take new shape as listeners come to know these people as individuals with compelling and relatable motivations and wishes.

Through these highly personal stories, Arora-Hutchinson weaves interviews with experts and family members. While bringing to light the decisions faced by doctors, patients and families alike, she examines how technological innovations can help bring lifesaving–and life-creating–medical advances but raise a host of ethical issues in the process. Arora-Hutchinson is joined by internationally renowned bioethics experts including Dr. Jeffrey Kahn, director of the Berman Institute, who provides clear-eyed perspective on the bioethics behind these cases.

“Pushkin Industries is thrilled to be partnering with The Berman Institute of Bioethics at Johns Hopkins University for this powerful exploration of the difficult questions that lie at the heart of bioethics,” said Gretta Cohn, Pushkin’s SVP of Content. ”Hearing from the world’s preeminent experts alongside the compelling personal accounts offers listeners a fascinating exploration of critically important issues.”

Episode 1: I Would’ve Let You Die, Too
Episode 2: The Girl Who Died Twice
Episode 3: Need a new Liver? Drinkers to the back of the Line. 
Episode 4: Why Can’t I Buy a Kidney? 
Episode 5: A Womb of One’s Own? 
Episode 6: Creating One Life to Save Another
Episode 7: An Off-Switch for Depression? 
Episode 8: Miracle Drugs, Million Dollar Price Tags
Episode 9: The Future of Baby-Making 
Episode 10: Prequel: The God Squad

“Bioethics is the ultimate form of storytelling; there is always a conflict and a life at stake,” said Arora-Hutchinson. “Listening to these experiences in audio has literally changed the way I think about life and death. It brings home the importance of us all understanding how these medical decisions are made every day.”

playing god? is available October 10, 2023, wherever you listen to podcasts. Listen to the trailer here and download the cover art here.

ABOUT THE HOST 

Lauren Arora Hutchinson joined the Berman Institute in June 2022 as the inaugural director of the Dracopoulos-Bloomberg iDeas Lab. She was previously a BBC journalist, award-winning audio storyteller, and academic who served as part of the core organizing team for the Berman Institute’s 2020 Levi Symposium, “The Ethics of Virtual Humans.” Arora-Hutchinson holds a PhD in the History of Science with a focus on Oral History from the London School of Hygiene and Tropical Medicine, where she taught in the Masters for Global Public Health program for six years, and completed a Wellcome Trust Imperial Media Fellowship to develop skills in science communication.

Arora-Hutchinson founded the immersive audio studio Sunday Blue to further explore the intersection between sound, story and interactivity and look at how intimate experiences can be shared. She has produced more than 20 independent features for the BBC, including talking to holocaust survivor Eva Schloss about becoming a hologram, speaking to Manfred Mohr about being one of the first people to use a computer to make art, and looking at how virtual reality has been used to explore grief.

ABOUT THE EXPERTS 

Jeffrey Kahn, PhD, MPH, is the Andreas C. Dracopoulos Director of the Johns Hopkins Berman Institute of Bioethics and the Robert Henry Levi and Ryda Hecht Levi Professor of Bioethics and Public Policy, as well as Professor in the Dept. of Health Policy and Management in the Johns Hopkins Bloomberg School of Public Health. He is an international leader in bioethics whose areas of work include exploring the intersection of ethics and health and science policy, human and animal research ethics, ethics and public health, and ethical issues in emerging biomedical and life sciences technologies.

Anna Mastroianni, JD, MPH, is Research Professor in Bioethics and Law at the Johns Hopkins Berman Institute of Bioethics, and previously Charles I. Stone Professor of Law at the University of Washington School of Law.  A former practicing attorney, she is known for her work  examining complex issues at the intersection of law, bioethics, public health, and health policy, including legal and ethical challenges arising in research in pregnancy, the use of genetic technologies in public health, and family building through assisted reproductive technologies.

Including their roles as co-Executive Producers on playing god?, Kahn and Mastroianni have partnered on many projects and are the editors and authors of the books Contemporary Issues in Bioethics; Beyond Consent: Seeking Justice in Research; and The Oxford Handbook of Public Health Ethics, and many articles based on their research.  They share a commitment to the public communication of bioethics issues, and speak widely across the U.S. and around the world on a range of bioethics topics, in addition to frequently appearing in the media to explain bioethics issues.

ABOUT BERMAN INSTITUTE OF BIOETHICS AT JOHNS HOPKINS UNIVERSITY / THE iDEAS LAB

A global leader in its field, the Berman Institute of Bioethics is an interdisciplinary university-wide institute  that draws expertise from across the breadth of Johns Hopkins University to study and address complex moral and policy issues in biomedical science, health care, and public health. Since its establishment in 1995, the Institute has been a leader in bioethics research, and in engagement among a broad range of scholars, health professionals, policymakers, students, and citizens.The Berman Institute established the Dracopoulos-Bloomberg iDeas Lab in 2021 to better inform the public, health care professionals, governments, and the private sector about critically important issues in bioethics and ethics in science more generally. As a creative incubator, the Lab is pioneering new approaches for creating bioethics content and storytelling, taking advantage of new media strategies and the latest media technologies to provide engaging, accurate and compelling content about the ethical issues surrounding decision-making in science, medicine and public health.

Outlining the Case for Physicians to Approve Workplace Accommodations for Patients with Long Covid

The Berman Institute’s Zackary Berger and Seton Hall Law Professor Doron Dorfman have published “Approving Workplace Accommodations for Patients with Long Covid — Advice for Clinicians” in the new edition of The New England Journal of Medicine.

The article is geared toward medical professionals faced with issues regarding specific diagnosis for long Covid (also known as post-acute sequelae of Covid-19) often requisite for employer work accommodation forms and disability claims. The implications for employers, HR professionals, attorneys and employees are, however, significant – especially given the estimated prevalence of the condition.

The authors point out that, “As of January 2023, the estimated prevalence of long Covid among people in the United States who had had acute infection was 11%.”

To put this in perspective, as of February 28, 2023, more than a than a hundred million COVID-19 cases (103,268,408)had been reported in the U.S., meaning that the incidence of long Covid among the population of the United States could well be in excess of 11 million.

Of interest to employers and medical professionals, the authors further note:

“According to guidance released in August 2021 by the Department of Health and Human Services and the Department of Justice, long Covid can be considered a protected disability under the Americans with Disabilities Act (ADA) and under other disability-antidiscrimination mandates (such as Section 504 of the Rehabilitation Act and Section 1557 of the Affordable Care Act). Persons with long Covid whose symptoms “substantially limit” their ability to perform one or more ‘major life activities’ such as doing manual tasks or working, or even performing mundane actions such as breathing or standing, are considered to have a disability. That classification renders persons with long Covid eligible for reasonable workplace accommodations. Accommodations under the ADA include modifications to policies to allow disabled workers to complete their jobs, such as giving them additional breaks, the opportunity to sit down while working, or a more flexible work schedule.”

 “Although the pandemic itself has been officially declared ‘over,’ its impact – debilitating for millions – will be an issue in the workplace, the economy and the daily lives of many for years if not decades to come,” said Dorfman, who specializes in health care law, disability law and employment law. “The sheer volume of those estimated to be impacted by long Covid and the potential ramifications under the law for those effected essentially mandates that employers and attorneys as well as medical clinicians familiarize themselves with the administrative and legal protocols and strictures pertaining to long Covid.”

The authors contend that although debilitating, long Covid “has joined the ranks of such conditions as fibromyalgia, myalgic encephalomyelitis (or chronic fatigue syndrome), and post-traumatic stress disorder, which lack unique molecular ‘signatures’ — no biomarkers or other abnormal laboratory or imaging tests have been identified to support their diagnosis. These diagnoses are therefore contentious, and government agencies, employers, and many physicians do not accept these conditions as real.”

“The problem with that is that long Covid is real, and can be really debilitating,” said Berger, a medical doctor and associate professor at Johns Hopkins School of Medicine. “A legitimate diagnostic code for Long covid exists under the International Classification of Diseases and is available for clinicians to use in documenting this condition, but evidence shows it is being underutilized – especially in low-income and marginalized neighborhoods.”

The authors note that another potential reason for underutilization of the diagnostic code for Long covid is timing: “the code was first introduced in October 2021, well into the pandemic and after clinicians had grown accustomed to using various other codes for long Covid symptoms.”

The authors conclude: “We believe it’s time for clinicians to use the code regularly, when appropriate. Its common usage would increase the legitimacy of long Covid as an independent diagnosis within the medical community.”

The diagnostic code is not the only way to document long Covid, however:

“Alternatively, clinicians can document the experience of patients whose symptoms render them unable to work without accommodations, focusing on functional impairment rather than diagnostic testing. Such a clinical approach is in keeping with ADA regulations that broadly define a ‘major life activity’ in terms of ‘the operation of a major bodily function.’ According to the expansive construction of disability in regulations created since the passage of the ADA Amendments Act of 2008, impairments will ‘virtually always be found to impose a substantial limitation on a major life activity,’ meaning on bodily functions.”

“Covid has wreaked historic devastation upon the world and killed more than a million people so far in just the United States,” said Berger. “Long after a positive result, patients are presenting now with significant respiratory deficiencies, exhaustion, chest pain and a host of other maladies that were not a part of their lives prior to their infection with Covid-19. If the estimates hold true, there are approximately 11 million people suffering under these conditions. We don’t want to kill off another million of them just because we don’t want to offer them additional breaks, the opportunity to sit down while working, or a more flexible work schedule.”

Rebecca Seltzer elected to American Academy of Pediatrics Council on Foster Care, Adoption, and Kinship Care Executive Committee

Berman Institute associate faculty member Rebecca Seltzer, an Assistant Professor of Pediatrics at the Johns Hopkins School of Medicine, has been elected to the American Academy of Pediatrics Council on Foster Care, Adoption, and Kinship Care Executive Committee.

Dr. Seltzer’s research involves improving care for children with medical complexity, with a particular focus on those in the child welfare system. She is exploring the ethical and policy challenges that arise when caring for this vulnerable population, including challenges related to medical decision-making, conducting research with children in foster care, and gaps in community supports and placement options for children with medical complexity. She is an attending physician at the Harriet Lane Primary Care clinic, where she oversees pediatric residents and medical students.

“This election is an honor and I am excited to take on more of a leadership role in foster care advocacy and policy,” said Dr. Seltzer.

The Council on Foster Care, Adoption, and Kinship Care promotes the health and development of children and youth who are at risk for or have experienced family disruption. The Council accomplishes this by developing policy guidelines for comprehensive and trauma-informed care, advocating for child and youth to thrive, and providing education and support to the members of the American Academy of Pediatrics, other health professionals, and the child welfare community.

Dr. Seltzer is a former Hecht-Levi Fellow at the Berman Institute. She received her BA from the University of Virginia as an Echols Scholar, received her MD from the Perelman School of Medicine at the University of Pennsylvania, completed pediatric residency training at the Children’s Hospital of Philadelphia, completed fellowship training in Academic General Pediatrics and ethics at Johns Hopkins, and received an MHS from the Johns Hopkins Bloomberg School of Public Health.

Professor Cynda Rushton to Receive AACN Award for Distinguished Career

The American Association of Critical-Care Nurses (AACN) has honored Cynda Hylton Rushton, PhD, RN, FAAN, with its 2022 Marguerite Rodgers Kinney Award for a Distinguished Career.

Rushton will receive the award for her exceptional contributions that enhance the care of critically ill patients and their families and the nurses who care for them during the 2022 National Teaching Institute & Critical Care Exposition in Houston, May 16-18.

An international leader in bioethics and nursing, Rushton is the Anne and George L. Bunting Professor of Clinical Ethics at the Johns Hopkins University Berman Institute of Bioethics and the School of Nursing. She co-chairs Johns Hopkins Hospital’s Ethics Committee and Consultation Service. A founding member of the Berman Institute, she co-led the first National Nursing Ethics Summit that produced a Blueprint for 21st Century Nursing Ethics.

In 2016, she co-led a national collaborative, State of the Science Initiative: Transforming Moral Distress into Moral Resilience in Nursing and co-chaired the American Nurses Association’s professional issues panel that created “A Call to Action: Exploring Moral Resilience Toward a Culture of Ethical Practice.” She was a member of the National Academies of Medicine, Science and Engineering Committee that produced the report “Taking Action Against Clinician Burnout: A Systems Approach to Professional Well-Being.”

“Dr. Rushton is an internationally recognized leader in nursing ethics, moral resilience and workforce issues and a longtime contributor to groundbreaking work on these topics,” said AACN President Beth Wathen. “Her work has influenced nursing practice, health policy and patient care.”

A member of AACN since 1979, Rushton is a frequent presenter at NTI and regularly contributes to AACN’s clinical journals.

She is a member of the American Nurses Association’s Center for Ethics and Human Rights Ethics Advisory Board and the American Nurses Foundation’s Well-Being Initiative Advisory Board.

Rushton is the chief synergy strategist for Maryland’s R3 Resilient Nurses Initiative, a statewide initiative to build resilience and ethical practice in nursing students and novice nurses.

She is a Hastings Center fellow, chair of the Hastings Center Fellows Council and a fellow of the American Academy of Nursing.

She is the editor and author of Moral Resilience: Transforming Moral Suffering in Healthcare, the first book to explore the emerging concept of moral resilience from a variety of perspectives including nursing, bioethics, philosophy, psychology, neuroscience and contemplative practice.

She earned her bachelor’s degree in nursing at the University of Kentucky, followed by a master’s degree in nursing at the Medical University of South Carolina and a PhD from Catholic University of America in Washington, D.C.

 

 

Gail Geller Joins New Project as part of GLIDE Collaborative

Assessing ethical implications of uncertainty for clinical practice during a pandemic: the case of Since the outbreak of the Covid-19 pandemic, an impressive amount of information has been produced and disseminated about potential interventions to prevent or mitigate the effects of disease. Grounded mainly on clinical and epidemiological studies, a series of recommendations regarding Covid-19 prevention and treatment strategies were issued by national and international health organizations. Despite that, innumerable important questions remain unanswered. Uncertainty is the order of the day.

Insofar as uncertainty is intrinsic to healthcare, the competence to make decisions without solid evidence is of paramount importance to practitioners. Even though we now have quite consistent evidence for some interventions, many physicians continue treating patients with substances that, according to the best scientific information available, lack evidence of efficacy. Those physicians are using their professional prerogative to prescribe off-label.

Especially in the course of a public health emergency of international concern, when it comes to professional practice, which factors impact the decision-making process? What counts as evidence for these practicing physicians? What should be the limits of off-label prescribing, and what are the ethical implications of this practice?

This project is part of the Berman Institute’s Global Infectious Disease Ethics Collaborative (GLIDE) in conjunction with the Wellcome Trust and the University of Oxford. Its primary aim is to understand how physicians make decisions when evidence is inconclusive. Secondarily, the team intends to analyze how physicians interpret scientific evidence, how they respond to it and why they might not adhere to it. Finally, they will also discuss the ethical and practical implications of prescribing treatments off-label during a pandemic.

PROJECT TEAM

  • Gail Geller, Berman Institute of Bioethics and School of Medicine, Johns Hopkins University, USA
  • Irani Gerab, Escola Paulista de Enfermagem, Federal University of Sao Paulo, Brazil
  • Angeliki Kerasidou, Ethox Centre, Nuffield Department of Population Health, University of Oxford, UK
  • Rachel Riera, Escola Paulista de Medicina, Federal University of Sao Paulo, Brazil
  • Aluisio Serodio, Escola Paulista de Medicina, Federal University of Sao Paulo, Brazil
  • Beatriz Thome, Escola Paulista de Medicina, Federal University of Sao Paulo, Brazi