Pediatric Bioethics in the Shadow of COVID

Wednesday, May 5, 2021 9 a.m. – 4:45 p.m. Continuing Education Credit

Requirements for Successful Completion: > Record attendance in REDCap form > Participate in program discussion > Complete post-program evaluation within 48 hours by May 14 Provider Approval Statements: •This educational activity has been awarded 6.25 nursing contact hours. Children’s Mercy Kansas City is approved with distinction as a provider of nursing continuing professional development by the Midwest Multistate Division, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation. •Children’s Mercy Hospital is accredited by the Missouri State Medical Association to provide continuing medical education for physicians. Children’s Mercy Hospital designates this live educational activity for a maximum of 6.5 AMA PRA Category1 Credit(s). Physicians should claim only the credit commensurate with the extent of their participation in the activity. •6.25 Social Work CEUs will be provided to licensed Social Workers. Children’s Mercy Hospital’s department of Social Work & Community Services has been approved as a Continuing Education provider by the state of Kansas Behavioral Sciences Regulatory Board. Conflict of Interest: •Dr. Barbara Pahud discloses that she is on a Speakers Bureau for Sanofi Pasteur, consultant on advisory boards for Merck, Pfizer and Sanofi Pasteur and is an investigator on clinical trials funded by GlaxoSmithKline, Merck, Moderna and Pfizer. •No conflicts of interest have been identified for the other planners and presenters for this educational activity.

Link to REDCap Attendance and Evaluation Form: https://cmhredcap.cmh.edu/surveys/?s=H8YTT77D7E (Complete by May 14 to received NPD (CNE)/CME credit.) Today's Agenda

9 to 9:10 a.m. Opening Remarks 9:10 to 10:10 a.m. COVID is Not the Same Everywhere: Different Countries’ Responses to the Pandemic 10:10 to 10:20 a.m. BREAK 10:20 to 11:20 a.m. Three Types of Distrust: Ignorance, Misunderstanding, and Injustice 11:20 to 11:30 a.m. BREAK 11:30 a.m. to 12:30 p.m. Allocation of Scarce Resources During the Pandemic 12:30 to 1:10 p.m. LUNCH BREAK 1:10 to 2:10 p.m. Balancing Hope and Fear: Vaccine Access and Vaccine Hesitancy 2:10 to 2:20 p.m. BREAK 2:20 to 3:20 p.m. Pediatric Nursing in the Pandemic: What is Beyond our Scope of Practice? 3:20 to 3:30 p.m. BREAK 3:30 to 4:30 p.m. Links Between Public Health Crises and Economic Inequities 4:30 to 4:45 p.m. Final Thoughts

Speakers listed here: https://www.childrensmercy.org/health-care-providers/bioethics-center/pediatric-bioethics-in-the-shadow-of-covid-symposium/ Many thanks to our generous donors:

• Sebahat Atar • John Lantos • Hui Siu Tan • Ivor Berkowitz • Efrat Lelkes • Christy Torkildson • Harold Bland • Anne M Lovell • Timothy Vedder • Lisa Force • Matt Mayer • Vanessa Watkins • Edwin Forman • Deedra Miller • Dawn Wolff • Sheila GK • Angira Patel • 5 Anonymous donors • Richard Goad • Kala Perkins • Children's Mercy Kansas City • Michael Harkness • Brenda Rogers • Glasnapp Family Foundation • Angela Knackstedt • Anna H Siegler • Bioethics Center Advisory Board & Fundraising Committee

For more information: https://support.childrensmercy.org/fundraiser/2816264 Cheers to 10 years of our Pediatric Bioethics Certificate Program

• First class of 17 students in 2011-12. • Our 10th cohort graduates this week. • We have trained nearly 300 students from over 25 countries.

https://www.childrensmercy.org/health-care-providers/bioethics-center/certificate-program/ Year One: 2011-2012

For a full list of graduates, visit our website: https://www.childrensmercy.org/health-care-providers/bioethics- center/certificate-program/

Year Two: 2012- 2013

For a full list of graduates, visit our website: https://www.childrensmercy.org/health-care-providers/bioethics- center/certificate-program/ Stefan Kutzsche (2012-13) MD, MHA, MSc (MHPE), PhD, special advisor at the Department for Education at Oslo University Hospital, Norway. • Stefan has been involved in neonatology and ethics education of medical trainees, international medical graduates, nurses and medical students in Norway, Malaysia and Cambodia and the U.S. • He is also writing historical biography vignettes edifying moral models to educate and convey the dominant values to future generations of medical doctors. • "From the perspective of a medical educator, the training at CMBC has enabled me to develop the ability to reflect and deliberate on my willingness to act according to moral reasoning." Year Three: 2013-2014

For a full list of graduates, visit our website: https://www.childrensmercy.org/health-care-providers/bioethics- center/certificate-program/ Regina Okhuysen-Cawley (2013-14) Associate Professor, Sections of Critical Care Medicine and Palliative Care, Baylor College of Medicine

• Yuri and I teamed up in Buenos Aires for the International Children's Palliative Care Network (ICPCN) conference in 2016...and in Rome to present pat the Global Gathering sponsored by the Maruzza Foundation in 2018. • I am the representative for Latin America for ICPCN and Chaired the Peds Section of the Yuriko Nakashima Latin American Palli Care Assoc in 2017 (2013-14) the day we • I am "guest editing" the second pediatric stormed the Mexican palliative care Special Issue of the Journal Senate. Children, Stephanie Kukora ('13-14) UMich • Stephanie researches parent/clinician communication and shared decision-making for tough decisions. She teaches advanced communication skills using improv theater exercises. • At UMich: • Pediatric Ethics Committee • Brandon NICU and Mott Hospital bereavement committees; • Directs the global health partnership in neonatology https://medimprov- between the Michigan and St. Paul’s Hosp Millennium mi.weebly.com/ Medical College in Addis Ababa, Ethiopia. Harold Bland (2013-14) Professor Emeritus, Florida State University College of Medicine • Executive Board of Missouri Kids 1st. We work to prevent, treat, and educate the public about child abuse and its lasting effects on children. We work closely with physicians who specialize in caring for children who have been abused."

• I was fortunate to be one of the members of the Pediatric Bioethics classes from Sept 2013-May 2014. I consider this class to be one of the most valuable classes of my life. Lorraine Dickey (2013-14) • Founded The Narrative Initiative LLC® in 2017 to use the power and efficiency of personal story to help healthcare staff and patients examine what is meaningful in experience of giving and receiving person- centered care. • Co-founded The Transformational Narrative Team LLC to bring narrative techniques to leaders and use the power of personal story and reflective listening to examine core values in post-pandemic world. • Neonatologist at St. Vincents Healthcare in Billings, MT serving some of the most remote areas of Montana and Wyoming. • Recently recorded a TEDx talk, “A Formula for Kindness,” expected in 2021. Year Four: 2014-2015 Jagdish Chinnappa (2014-15) Manipal Hospital Bangalore • Member of Ethics board at Manipal and St Johns hospital Bangalore • Organizing chairperson of yearly Pedethics symposium • Currently working on a Pedethics module for the Indian Academy of Pediatrics • Program at Children's Mercy was the igniting of a passion for the pursuit of pediatric bioethics in India

• Website: www.childcentral.in Lou Bartoshesky (2013-14)

Dr. Bartoshesky served as medical director of genetics and newborn screening for the Delaware Division of Public Health. Former Chair of Pediatrics at Christiana Care Health System. • "The Pediatric Bioethics Program was challenging intellectually and great fun as well." Year Five: 2015-2016 Paula Aristizabal (2015-16) Assoc Prof of Pediatric Hematology/Oncology, UCSD, Medical Director International Outreach Program & Quality Improvement Lead; Member Population Sciences, Disparities & Community Engagement, UCSD Moores Cancer Center • Dr. Aristizabal research interests include ethics, patient- provider communication and global health, with a focus on discovering the causes of pediatric cancer disparities and developing strategies to improve outcomes in racial/ethnic minorities and underserved groups. • Her work focuses on • barriers to participation in cancer clinical trials for Hispanic children • Effect of social determinants of health on outcomes in Hispanics. • Participating in the Bioethics Certificate has been critical to Dr. Aristizabal’s career advancement.

• Websites: https://www.rchsd.org/doctors/paula-aristizabal-md- mas/ and https://profiles.ucsd.edu/maria.aristizabal Sumaira Khowaja-Punjwani (2015-16) PhD (USA), CPB (USA), MBEth (Pak) & BScN (Pak), Saifee Burhani School of Nursing • PhD in Bioethics & Global Public Health (1st in Pakistan) • Vice-President Pakistan for Asian Bioethics Association. • Faculty for "Diploma in Healthcare Ethics & Professionalism" initiated by Shalamar Bioethics Department, Shalamar Medical and Dental College, Lahore, Pakistan. • Serving World Emergency COVID-19 Pandemic Ethics (WeCope) Committee.

• "It was a wonderful and enlightening experience for me. The Children’s Mercy program equipped me with the essential knowledge required related to pediatric bioethics.”

• Website: https://sbson.edu.pk/faculty.html 2016-17 Year Six: 2016-17 Amy Caruso-Brown (2016-17) MD, MSc, MSCS, HEC-C, Associate Professor of Bioethics and Humanities and of Pediatrics, SUNY Upstate Medical University

• Pediatric oncologist, bioethicist and medical educator; • Research interests include treatment refusal and decision-making conflicts in pediatrics, the impact of social media on trust, and the role of social justice in health professions education." • "I absolutely loved my year in the certificate program. It significantly advanced my understanding of pediatric bioethics and I continue to collaborate with my fellow students and faculty!”

• https://www.upstate.edu/bioethics/faculty-staff/fac_brown.php • https://www.linkedin.com/in/amycarusobrown/ Sarosh Saleem (2016-17) Assistant Professor & Head of Bioethics Department, Shalamar Medical & Dental College, Lahore, Pakistan

• Sarosh Saleem, MBBS, First Bioethicist in Pakistan with Fellowship in Pediatric Ethics (from Children's Mercy Bioethics Center), Pediatric Specialist and a skilled researcher. • Founding head of the Bioethics Department Shalamar Medical College, Lahore. • Introduced Bioethics as a formal subject in undergraduate and postgraduate medical education in Pakistan. • "It was an excellent experience and learning opportunity. The interaction with the faculty and participants was extremely beneficial."

• Website: www.medethicsblog.wordpress.com Year Seven: 2017-18 Year Seven: 2017-2018

For a full list of graduates, visit our website: https://www.childrensmercy.org/health-care-providers/bioethics- center/certificate-program/ Ingrid Holm (2017-18) MD, MPH, Professor of Pediatrics, Boston Children’s Hospital and Harvard Medical School

• My major research interests are in the implementation of genomic medicine, especially in pediatrics, and in the ELSI-issues related to the return of genomic information to families • Faculty, Harvard Medical School Center for Bioethics Courses on Ethics and Genomics for the Masters of Bioethics and the Harvard Fellowship in Bioethics. • "I had a wonderful experience in the program, learning a ton and making new friends.” • Website: https://www.childrenshospital.org/research/researchers/h/ingrid- holm Teesha Miller (2017-18) Executive Director, Youth Ambassadors KC

• Youth Ambassadors serves underrepresented teenagers, many of whom have a history of multiple trauma exposure and continue to live in compromising circumstances. • This year revealed deep-seated systemic social ills and inequities in access and treatment in populations of color. • I am working with two local projects to increase awareness and access to testing, treatments, and vaccines in people of color, particularly youth. • As one of the few non-clinical laypersons in the program, I experienced pediatric bioethics through the lens of a member of an underrepresented community. The CMH Pediatric Bioethics set the stage for a healthy interpersonal investigation of bioethics and fueled a passion for grassroots engagement. • Website: https://www.youthambassadorskc.org/ Year Eight: 2018-19 Year Eight: 2018-2019

For a full list of graduates, visit our website: https://www.childrensmercy.org/health-care-providers/bioethics- center/certificate-program/ Hazel Gutiérrez (2018-19) Pediatrician, Pediatric Palliative Care Specialist. Chair of the Clinical Bioethics Committee at the National Children’s Hospital, San José, Costa Rica • "I have been creating awareness on health workers about including mature minors in their medical decision-making at end of life. Also, encouraging case-based learning about the relationship between moral distress and medical futility in the pediatric care setting." • "My time during the pediatric bioethics certificate was fascinating and deeply inspiring. The mentoring enhanced my professional career and will accompany me for the rest of my life.”

• Website: https://www.hnn.sa.cr Charlotte Smardo (2018-19) CICU Bedside Nurse, ECMO Specialist, Children's Mercy Kansas City

• "Upon completion of the Bioethics course I continue to participate in various ethical related roles in our hospital. The program augmented and enhanced my intellectual ethical awareness. I am able to foster a culture of open and honest ethical conversations to strenghten compassion, understanding, and resilience in our ICU." • "I thoroughly enjoyed my time in the program, each week. I would enthusiastically encourage others to participate." María Azucena Niño Tovar (2018-19) Pediatrician Neonatologist, Specialist in Bioethics, Universidad Industrial de Santander (UIS) • Clinical Bioethics Course for 3rd year Residents of Pediatrics • Monthly session on Clinical Bioethics with all the members of the Department of Pediatrics • Coordinator, Ethics Committee of the Colombian Neonatology Assoc (ASCON) • President of the Investigation Ethics Committee at the Infectious Diseases Center in Bucaramanga, Colombia • Clinical Ethics consultant at my University Hospital and at Clinica Materno-Infantil San Luis • "My time in the program was an extraordinary experience and it contributed to provide me a “voice” in pediatric bioethics in my country.”

• Website: https://www.uis.edu.co/webUIS/es/academia/facultades/salud/escuelas/medicina/ programasAcademicos/medicina/index.jsp?variable=52 Ivor Berkowitz (2018-19) Assoc Prof, Dept of Anesthesiology and Critical Care Medicine. The Johns Hopkins School of Medicine • I currently continue my work in the Dept of Anesthesiology and Critical Care Medicine in pediatric anesthesia and intensive care. My work in pediatric bioethics continues in the arena of challenges to the diagnosis and concept of brain death."

• I loved the Mercy course and miss it deeply. I was academically stimulated by the readings, writings, discussions with students and faculty and working on my project and then paper with my mentor, Jeremy Garrett. I continue to read avidly and am involved in research in the area of brain.”

• https://anesthesiology.hopkinsmedicine.org/pediatric-anesthesia/pediatric-critical- care/ivor-berkowitz/ Vanessa Madrigal (2018-19) MD MSCE HEC-C, Director, Pediatric Ethics Program / Pediatric Critical Care Attending, Children's National Hospital

• Current director of the ethics program and chair of the Ethics Committee at Children's National Hospital. We are continuing to expand the program in areas of 1) service / clinical consults 2) Education 3) Scholarship. • "I absolutely loved the content and expanding general knowledge, but by far the best experience was getting to know the faculty and students. The weekly discussions were terrific in eliciting different perspectives and helped enrich the experience. I will continue to see my time in the program as a cornerstone in peer and mentor networking with strong foundation in Pediatric Bioethics."

• https://childrensnational.org/visit/resources-for-families/family-services/ethics- program. Year Nine: 2019-20 Year Nine: 2019-2020

For a full list of graduates, visit our website: https://www.childrensmercy.org/health-care-providers/bioethics- center/certificate-program/ Terri Major-Kincade (2019-20) MD, Chair Neonatal/Perinatal Palliative Care THR Resource; Chair DEI Committee Pregnancy Loss and Infant Death Alliance and Attending Neonatologist/Locums Physician • Terri Lynn Major-Kincade, “Harbinger of Hope” Pediatric Hospice Fellow Class of 2022 • My work in bioethics: I continue to incorporate the lessons I learned in the Certificate Bioethics program to my work in facilitating difficult conversation in the Neonatal ICU between parents and health care providers especially around issues related to futility, moral distress, cultural barriers and limits of viability. This work includes moral distress rounds, workshops around compassion fatigue, and standardized debriefing sessions. I hope to publish the culmination of these efforts this year. • The program was the single most collaborative and immersive experience I’ve ever head in exploring the multi-faceted and complex issues related to bioethics and pediatrics, my world view was significantly broadened by my international colleagues and by sitting at the table with multiple disciplines, the syllabus alone and the faculty are a gift that keeps on giving! Thank-you! • www.drterrimd.com Danilo Ballesteros (2019-20) Associate Professor at the College of Medicine of the De La Salle Medical and Health Sciences Institute • Bioethics consultant of the Archdiocese of Lipa – Commission on Health Care, • Chairperson of the Health Ethics Committee of the National Children’s Hospital • Managing director of Diagnosticare Medical and Diagnostic Center.

• "The Children’s Mercy Bioethics Center Pediatric Bioethics Certificate Program is a comprehensive and intensive course providing a broad lens on pediatric bioethical issues. The activities are meticulously chosen and are delivered and facilitated by dedicated experts." Children's Mercy Certificate Program in Pediatric Bioethics

Year Ten: 2020-2021

Thank you for joining us!

Children's Mercy Bioethics Center We are still building! Brian Carter, MD Jennifer Pearl John Lantos, MD Angie Knackstedt, BSN, RN, NPD-BC Jeremy Garrett, PhD Vanessa Watkins, MPH, FACHE

*Names are as pictured at right