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 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 month, families and medical teams at Johns Hopkins Hospital began using “Nos Vamos a Casa.” Boss and Munoz-Blanco will assess whether both groups find it helpful and continue to improve it based on their feedback. If it is successful, they 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.” 

Employing Greek Tragedy to Help Medical Professionals Cope with COVID

Frontline medical workers continue to confront unprecedented professional and personal challenges of the COVID-19 pandemic. From their own inadequate access to personal protective equipment to facing impossible decisions about allocating limited lifesaving resources among their patients, clinicians have experienced feelings of betrayal, anger, and fear.

Now, by combining one of the pandemic’s newest forms of communication – the Zoom webinar – with the ancient art of Greek tragedy, an innovative project is reaching frontline medical workers who may be struggling in isolation, providing them the opportunity to name and communalize their experiences, connect with colleagues, and access available resources.

Theater of War for Frontline Medical Providers – developed by Theater of War Productions, the Johns Hopkins Berman Institute of Bioethics, and the Johns Hopkins Program in Arts, Humanities & Health – presents dramatic readings by acclaimed actors of scenes from ancient Greek plays for audiences of frontline medical providers to open up powerful dialogue about difficult subjects. In a paper published by The Lancet on July 23, the project’s organizers write “we have found that presenting scenes from ancient tragedies about complex ethical situations for frontline medical providers generates an open, non-threatening space in which health personnel can begin to process, interrogate, share, and bear witness to experiences of loss, betrayal, grief, and other forms of moral suffering during the COVID-19 pandemic.”

Theater of War for Frontline Medical Providers events begin with a live reading of scenes carefully curated to address themes and issues that medical providers may be facing during the pandemic, such as personal risk, abandonment, deferred grief, deviation from standards of care, helplessness, and complicity in creating suffering. After the performance, the actors are replaced by four panelists—a diverse group of front-line medical providers—who respond to what they heard in the plays that resonated with their own experiences of caring for patients during the pandemic. After the panelists’ remarks, a skilled facilitator prompts the audience to join the discussion with a series of questions encouraging reflection and dialogue about themes raised by the plays. The discussion provides an opportunity for the medical workers in the audience to take center stage, sharing the impact of COVID-19 on their lives and finding solace in the community of their peers.

The project premiered on May 24, with 417 clinicians from the Baltimore area logging onto Zoom for a performance featuring Frances McDormand, Jesse Eisenberg, David Strathairn, and Frankie Faison. In a post-performance evaluation, 93% of respondents reported that the program offered new insights about their experience during COVID; 92% said the program made it easier to talk about difficult subjects related to COVID. Following that success, the Arts in Health Initiative of the Laurie M Tisch Illumination Fund provided a grant to fund 10 performances of the project in New York City.

The first of these performances, focusing on the EMS/first responder community in NYC will take place Thursday, July 30, at 7 p.m. While focusing on EMS professionals, this first performance will be open to the general public. To register, please visit: www.towems.eventbrite.com. Cast members will include: Anthony Almojera, Vice President of New York City’s Uniformed EMS Officers Union; Amy Ryan, whose credits include “The Office,” “Birdman,” and “Gone Baby Gone;” and Chad Coleman from “The Wire” and “The Walking Dead,” among other credits.

Other actors confirmed to participate in upcoming performances include McDormand, Strathairn, Faison, Eisenberg, and David Zayas. The next two performances will be:

August 19, noon-2 p.m.
Lincoln Medical Center, Bronx
Featuring Frances McDormand, Jesse Eisenberg, David Zayas, Frankie Faison

September 16, noon-2 p.m.
Lenox Hill Hospital
Manhattan Eye, Ear, and Throat
Lenox Health Greenwich Village
Cast TBA

“Ancient tragedies provide a new entry point for clinicians to process moral suffering generated by the pandemic,” wrote Theater of War Artistic Director Bryan Doerries and Berman Institute faculty Cynda Rushton, Jeremy Greene and Gail Geller in The Lancet. “While individual cognitive reframing can be helpful in the treatment of traumatic disorders, there is also a role for collective social interventions in responding to collective trauma. Ancient Greek plays about chronic and terminal illness, moral distress, the challenges of witnessing suffering, and end-of-life care can be used to forge a common vocabulary for openly engaging doctors, nurses, students, and other health-care professionals in creating constructive dialogue, fostering understanding, compassion, and a renewed sense of community.”

A Physician’s Open Letter to Hospital Visitors

Dear Visitors: ­­­­

We love you, but for now we have to show it from a distance.

“Physical distancing,” staying away from each other and avoiding groups of people, is absolutely necessary to help fight COVID-19. This is most important in our hospitals, where the risk of catching and spreading the virus is highest. Patients still need to come to the hospital for care, but for now they can’t bring anyone with them. This can go two ways—it can make us more distant, or it can make us closer than ever.

Having a loved one in the hospital is never easy, and we know this policy makes it harder. It hurts when you can’t be there for loved ones when they need it most—even though we know it’s best for patients, healthcare providers and our community. We believe this pain of separation is proof that we need each other. Our shared discomfort with rules that keep people apart can also be the glue that helps us stick together.

The fight against COVID-19 is changing the world as we know it, and we expect even more changes in coming days, weeks and months. We’re all doing our best to cope, but many of us are feeling scared and alone. It’s natural to be mad and blame others, and to want to take as much as we can for ourselves. Yet, there has never been a time in history when the common ground that connects all people has been easier to see.

COVID-19 is a deadly virus that threatens everyone—all ages, colors and genders. Just as it affects all of us, we all have the power to help defeat it.

We’re in this together. We care deeply for our patients, and we love those who want to be here with us to support them. For now, we ask that you kindly show your love by going home!

Sincerely,
Dr. Marielle Gross

Marielle S. Gross completed her residency in Gynecology & Obstetrics at Johns Hopkins University School of Medicine in 2018. She is a Hecht-Levi Fellow at the Berman Institute of Bioethics. This summer, she will join the faculty at the University of Pittsburgh’s School of Medicine.

Q&A with Cynda Hylton Rushton: Examining Clinician Burnout

By Danielle Kress
Published courtesy of Johns Hopkins School of Nursing

In Fall 2019 the National Academy of Medicine released a new report, Taking Action Against Clinician Burnout: A Systems Approach to Professional Well-Being.

Cynda Hylton Rushton, PhD, RN, FAAN, the Anne and George L. Bunting Professor of Clinical Ethics in the Johns Hopkins Berman Institute of Bioethics and the School of Nursing, was one of only two nurses selected to serve on the committee preparing the report. As a forerunner in helping nurses overcome the burden of burnout, Rushton played a key role in bringing forth evidence-based recommendations for addressing this problem in the future.

Rushton shares some inside perspective into burnout, the committee’s findings, and what this means going forward.

Why was a committee needed to explore burnout among health professionals, which the committee defined as physicians, nurses, pharmacists, dentists, nurse practitioners, and physician assistants?
Burnout, a state of emotional exhaustion, cynicism and decreased personal accomplishment, remains a significant problem for clinicians across the country. On a daily basis, clinicians are struggling to balance the needs of an increased number of sick or injured patients and populations dealing with comorbidities and severe illnesses, the intersection of patient care and technology, documentation requirements and mounting pressure to do more with less. When these factors collide, there becomes a gap between the way clinicians want to practice and the way they actually are. These threats to integrity can result in moral distress and lead to burnout.

Overall, clinicians are drained physically, mentally, and emotionally and their well-being degraded. The committee was charged with examining the scientific evidence regarding the causes and consequences of burnout and identifying evidence-based systemic solutions.

How much is burnout really affecting clinicians?
Among nurses, 35-45 percent experience some form of burnout, with comparable rates among other providers and higher rates among physicians. It’s important to note that burnout has been viewed as an occupational hazard rather than a mental health diagnosis. It is not a few days or even weeks of depletion or exhaustion. It is the cumulative, long-term distress and suffering that is slowly eroding the workforce and leading to significant job dissatisfaction and many leaving their professions. In some instances, serious health concerns and suicide can result.

What about the impact on patients?
Patient care can suffer when clinicians withdraw or are not fully engaged in their work. Moral distress, long hours, negative work environments, or organizational inefficiencies can all impact a clinician’s ability to provide what they feel is quality, safe patient care. Likewise, patients are impacted when health care organizations are unable to attract and retain competent and compassionate clinicians.

What does this mean for nurses?
As the largest sector of the health care professions, nurses have the most patient interaction and are at the center of the health care team. Nurses are integral to helping patients to holistically respond to their health conditions, illness or injury. If nurses are suffering from burnout and moral distress, the whole care team and the patient, will experience serious consequences when nurses’ capacities to adapt to the organizational and external pressures are eventually exceeded.

What is one of the most important takeaways from the NAM report on burnout?
Burnout is a complex and pervasive problem that impacts all members of the health care team, health care organizations, and the public. Bold and comprehensive reforms are needed to stem the tide of burnout. No longer is it justified for individual clinicians to be responsible for remediating the serious systemic contributors to burnout that undermine clinical practice.

The consensus report calls for a systems approach to clinician wellbeing that engages point-of-care clinicians, key stakeholders, professional societies and organizations, regulatory bodies, insurers, and policy makers to design comprehensive solutions. Reforms that impact the structure, organization, and culture of health care are urgently needed.

What can be done to address this widespread problem?
To effect sustainable change, strategic actions and organizational changes that address the underlying contributors to burnout must be developed, implemented, and evaluated. That includes health system leadership, dismantling systemic barriers to providing safe and quality care, and supporting the resiliency and integrity of frontline clinicians and learners in the health professions.

Increased investment in a comprehensive research agenda is vital to understanding the effectiveness and impact of systemic solutions. We need to look at the health care team in its entirety and understand that strengthening each part will improve job performance and patient care and satisfaction and contribute to healthier work environments.

How has your MEPRA program been innovative in this area?
At Johns Hopkins, I have led the development and implementation of the Mindful Ethical Practice and Resilience Academy (MEPRA). The Academy includes a foundational curriculum, community of practice, retreats, and unit-based Champion initiative. The goal is to build moral resilience among frontline nurses who face ethical challenges from issues related to resource allocation and ineffective communication to patient suffering and care coordination within the organization, and to foster systemic solutions.

The results have been substantial so far. The Academy is truly resonating with frontline nurses and giving them renewed confidence in what they do and why they do it. We’re witnessing a ripple effect, seeing how newly enabled nurses are speaking up and helping others on the health care team with some of the tools and skills they learned through the program. The academy goes beyond individual skills to engage frontline nurses in designing solutions to cultivate a culture of ethical practice in health care.

**

Additional Resources:

Berman Institute Director Named to International Commission

Jeffrey Kahn, Andreas C. Dracopoulos Director of the Berman Institute and Robert Henry Levi and Ryda Hecht Levi Professor of Bioethics and Public Policy, has been appointed to an international commission convened by the U.S. National Academy of Medicine, the U.S. National Academy of Sciences, and the Royal Society of the U.K., with the participation of science and medical academies around the world, to develop a framework for scientists, clinicians, and regulatory authorities to consider when assessing potential clinical applications of human germline genome editing. The framework will identify a number of scientific, medical, and ethical requirements that should be considered, and could inform the development of a potential pathway from research to clinical use – if society concludes that heritable human genome editing applications are acceptable.

Prof. Kahn has served on numerous state and federal advisory panels. He is currently chair of National Academies of Sciences, Engineering, and Medicine’s Board on Health Sciences Policy, and has previously chaired its committee on the Use of Chimpanzees in Biomedical and Behavioral Research (2011); the committee on Ethics Principles and Guidelines for Health Standards for Long Duration and Exploration Spaceflights (2014); and a committee on the Ethical, Social, and Policy Considerations of Mitochondrial Replacement Techniques (2016).  He also formerly served as a member of the National Institutes of Health (NIH) Recombinant DNA Advisory Committee.

The commission is the latest action from the international science community to address issues around human genome editing.  It follows the Second International Summit on Human Genome Editing in Hong Kong – convened last November by the U.S. National Academies, the Royal Society, and the Academy of Sciences of Hong Kong. The topic became a focus of global attention when a scientist from China revealed at the summit that as a result of his research, twins had been born whose embryonic genomes had been edited. The scientist was widely condemned by the global scientific community for violating long-standing scientific principles and ethical norms.

The commission will:

  • identify the scientific issues – as well as societal and ethical issues, where inextricably linked – that must be evaluated for any possible clinical application of germline genome editing;
  • identify protocols and preclinical validation for evaluating the potential for off-target effects, mosaicism, and any potential long-term side effects that may result;
  • discuss ways to assess the balance between potential benefits and harms of germline editing applications to a child and to subsequent generations;
  • design appropriate protocols for obtaining patient consent and ethical approval from review committees, and for satisfying requirements of regulatory authorities;
  • assess possible mechanisms for long-term monitoring of children born with edited genomes; and
  • outline research and clinical characteristics that would form part of an oversight structure, including defining criteria for heritable genome editing, monitoring any clinical use, and bringing forward concerns about human experiments.

The commission will hold public meetings and an international workshop, and will also issue a call for public input to inform their work.  The commission’s final report is expected to be issued in the spring of 2020.

Viewing Drug Shortages as a Public Health Crisis

In resource-rich countries, 5-year survival rates for children with cancer approach 85%. However, shortages in the drugs which make up the backbone of many proven and life-saving pediatric oncology regimens have become commonplace in the United States, with far-reaching consequences. In a paper published in the March 4 JAMA Pediatrics, Berman Institute professor Yoram Unguru and colleagues explore the causes and impacts of drug shortages, and call for government intervention to address this growing public health crisis.

“Typically we only get one chance to cure disease. If that opportunity is missed, it is rare we are able to cure childhood cancer,” says. Dr. Unguru. “Direct consequences of drug shortages include increased medication errors, delayed administration of life-saving therapy, inferior outcomes, and patient deaths.”

“At the height of the shortages, a survey of medical oncologists found that a staggering 83% of oncologists weren’t able to prescribe their preferred chemotherapy agent. More than 75% had to make a major change in treatment such as choosing a different treatment regimen or substitute different drugs during the treatment. And over 40% had to delay the start of treatment. Two surveys of childhood cancer specialists, in 2015 and in 2017 , found that two out of three pediatric oncologists reported that their patients’ clinical care was compromised by the shortages.”

Dr. Unguru and his co-authors argue that the U.S., like many other countries already have, should establish an essential medicines list. As defined by the WHO, essential medicines satisfy the priority health care needs of the population. Medicines included in the essential medicines listare both clinically effective and cost effective and are to be available within the context of functioning health systems at all times in adequate amounts and dosage forms, with assured quality and at an affordable price.The current WHO Essential Medicines List for Children includes 18 chemotherapy agents and 4 supportive care medicines.

“It may shock you to hear, but over the past 2.5 years, nearly two-thirds of these essential medicines for children with cancer have been or are currently in short supply in the U.S.  In fact, at this time, 5 of the 18 essential medicines, nearly 30%, are in short supply in the U.S.,” said Dr. Unguru.

Dr. Unguru is a pediatric hematologist/oncologist with joint faculty appointments at The Herman and Walter Samuelson Children’s Hospital at Sinai and The Johns Hopkins Berman Institute of Bioethics, where he is a Core Faculty member. He is also an Assistant Professor in the Johns Hopkins School of Medicine. Dr. Unguru is a member of the Children’s Oncology Group, and leads a multidisciplinary, transnational working group examining the ethical and policy implications of chemotherapy shortages in childhood cancer.

Addressing Challenges of Children with Medical Complexity

Drs. Renee Boss and Rebecca Seltzer, faculty members at the Berman Institute of Bioethics, hosted the Robert H. Levi Leadership Symposium, “Where can they live? The Ethical Challenges of Gaps in Community Supports, Services, and Placement Options for Children with Medical Complexity,” on February 4-5. While children with medical complexity and their families interact with multiple systems of care as they navigate complex medical and social needs, these systems tend to work in silos. The Levi Symposium offered a unique opportunity to bridge those gaps.

Leaders from across the various systems of care in Maryland that serve this population of children (i.e., healthcare, social services, Medicaid, Maryland Department of Health, case management, policy, law, advocacy) collaborated with with parents and national experts in policy, research, and clinical care of children with medical complexity (CMC). This 2-day symposium included a publically attended panel discussion, followed by an all-day invite-only working group.

For more information about the symposium and to learn more about the invited guests and progress, please visit the symposium website.

Approximately 100 guests attended the first event of the symposium, a public panel discussion titled “Defining ‘Good Outcomes’ for Children, Families, and Systems of Care in the Context of Pediatric Medical Complexity.” Panelists included:

  • Marisa Berry, a parent of a child with medical complexity;
  • Margaret Moon, MD, MPH, the Chief Medical Officer of Johns Hopkins Children’s Center;
  • Debbie Marini, MSW, LCSW-C, Director of Placement and Permanency at the Social Services Administration (SSA) of the Maryland Department of Human Services (MDHS);
  • Rebecca Jones Gaston, MSW, the Executive Director of the SSA at MDHS;
  • Chris Feudtner, MD, PhD, MPH, an ethicist and complex care/palliative care physician at the Children’s Hospital of Philadelphia.

This diverse panel of speakers offered their unique perspectives on this topic, followed by an engaging Q+A discussion session with the audience. The panelists’ commentary and subsequent discussion regarding what defines “good” outcomes in this context helped set the stage and clarify objectives for the next day’s working group agenda.

During the full-day meeting, working group members came together to discuss what policies and practices exist (or are lacking) in Maryland to address the needs of CMC, especially as they relate to placements, supports, and services. They heard the perspectives of stakeholders across systems/agencies in Maryland, listened to parents share their stories of caring for a child with complex medical needs, learned from national experts about what is happening in other states, and brainstormed where to prioritize collaborative efforts to address the unmet needs of this population.

Improving access to high quality data, especially linked across systems, was highlighted as an important step to better understanding and tracking this population. One goal is to develop a cross-sector complex care consortium in Maryland to share data and work together to inform clinical, placement, and policy innovations.

The Levi Symposium sparked important cross-sector dialogue about caring for children with medical complexity and connected key stakeholders in the state of Maryland and beyond. Moving forward, invited guests will continue to collaborate in research, advocacy, and practice to enhance systems of care for children with medical complexity. Knowledge and perspectives gained through this symposium will be disseminated through scholarly publications.