2024 Annual Symposium: Innovations in Pediatric Palliative Care: Addressing Compassionate Care and Ethical Considerations in Complex Cardiac Disease

The Division of Quality of Life and Pediatric Palliative Care's First Annual Symposium

Stanford University School of Medicine

Berg Hall, Li Ka Shing Center

October 8th, 2024

8:00 am -4:00 pm

The Division of Quality of Life (QoLA) and Pediatric Palliative Care's First Annual Symposium

2024 Annual Symposium Topic:

Innovations in Pediatric Palliative Care: Addressing Compassionate Care and Ethical Considerations in Complex Cardiac Disease

Registration

Register today for this virtual and in-person event. CME will be offered.

Agenda

View the complete agenda for the symposium!


Speakers

Get to know more about our distinguished speakers!


Justin N. Baker, MD, FAAP, FAAHPM

Justin N. Baker, MD, FAAP, FAAHPH, has been appointed Professor of Pediatrics, and is the inaugural Chief of the Division of Quality of Life and Pediatric Palliative Care within the Department of Pediatrics, and Stanford Medicine Children’s Health Associate Chief Quality Officer for Patient Experience and Holistic Care. Dr. Baker is internationally recognized as an outstanding clinician, mentor, educator as well as an innovative clinical investigator. 

Dr. Baker received his M.D. from the University of Texas Health Science Center where he also completed his residency, followed by a fellowship at St. Jude’s Research Hospital.  Dr. Baker is a founding team member of the Quality of Life for All (QOLA) Service (the St. Jude palliative care team). He also founded and continues to lead the St Jude Bereaved Parent Steering Council and Bereaved Parent Mentoring Program. He is viewed as a leader in integration of palliative care concepts into the ongoing care of children with cancer. He co-led the effort to create a model designed to facilitate integration of palliative care principles into the care of suffering children and their families – the Individualized Care Planning and Coordination Model. 

Dr. Baker is an NIH R01-funded researcher and internationally recognized physician-scientist with more than 250 publications. His main research interests include communication and decision-making, ethical considerations surrounding enrollment in Phase I clinical trials, palliative care in resource constrained settings, grief and bereavement issues, integrating palliative care into the ongoing care of children with cancer, as well as patient-reported outcomes and pain and symptom control. Additionally, the community-based pediatric palliative care program that he established in 2012 (QoLA Kids) established a new paradigm for home-based hospice and palliative care and serves as an optimal model for institutions across the world. Involvement in the education of the next generation of clinicians and researchers has been a continued priority.

Elizabeth D. Blume, M.D.

Dr. Elizabeth Blume is currently the Chief of the Division of Advanced Cardiac Therapies in the Department of Cardiology at Boston Children’s Hospital. She is Professor of Pediatrics at Harvard Medical School and holds the John “Barry” Keane Chair in Pediatric Cardiology.  She leads a multidisciplinary team in the clinical, research, educational, and administrative duties of this Division, which includes The Heart Failure Service, Cardiomyopathy Program, VAD Service, Heart Transplant Program and Cardiac Anticoagulation Program. Her research has always been tied closely with her clinical practice caring for children with end-stage and advanced heart disease. Among her many contributions in the field of mechanical support and heart transplant, Dr Blume has served as Co-PI to the NIH contract of INTERMACSTM/Pedimacs, Chair of the AHA Early Career Committee, and President of the Pediatric Heart Transplant Society.

She has worked to bring the importance of palliative care issues to the forefront of pediatric cardiology.   Her recent work to improve symptom burden, communication, and decision making for providers and families of children with advanced heart disease has result in several important publications and collaborations, including the recent AHA statement on Palliative Care in Pediatric Cardiology.

Dr. Blume earned her undergraduate degree from Brown University and her MD from Case Western Reserve University School of Medicine.  She did all her training at Boston Children’s including pediatric residency, cardiology fellowship, and senior fellowship in heart failure, VAD and transplant.  She enjoys mentoring fellows and early career clinicians, learning daily from her patients and colleagues, and exploring the outdoors with her young adult children.

Akila Burford, MSW

Bio forthcoming.

Danton Char, MD

Danton Char is a pediatric cardiac anesthesiologist, clinical researcher, and empirical bioethics researcher at Lucile Packard Children's Hospital and Stanford University. He focuses on improving the lives of infants, children, and adults with complex congenital cardiac disease and supporting the well-being of their caregivers and families. His research also focuses on identifying and addressing ethical concerns arising with implementation of next generation technologies to bedside clinical care for all patients, including genomic testing, artificial intelligence/machine learning, and mechanical circulatory support.

Melissa Cousino, PhD

Melissa Cousino PhD is a clinical psychologist and Associate Professor of Pediatrics and Cardiac Surgery at the University of Michigan. Dr. Cousino is Director of the M-COPE Psychosocial Services and Research Program at the University of Michigan Congenital Heart Center where she cares for patients and families with pediatric and young adult heart disease, with specific expertise in caring for children with advanced forms of heart disease, including heart failure, heart transplant and single ventricle heart disease. Dr. Cousino has led federally funded research studies on palliative and psychosocial care in pediatric heart disease and served on leading clinical practice guidelines and state of the science workshops regarding palliative care in pediatric cardiology. She serves on scientific committees and boards for various leading medical organizations and parent/patient focused organizations, including the International Society for Heart and Lung Transplantation, Advanced Cardiac Therapies Improving Outcomes Network (ACTION), Enduring Hearts, and Transplant Families.

Pamela S. Hinds, PhD, RN, FAAN

Pamela S. Hinds, Ph.D., R.N., FAAN, is the Interim Director of the Center for Translational Research, Director of the Department of Nursing Science, Professional Practice and Quality, Research Integrity Officer at Children's National Health System, and a Professor of Pediatrics at the George Washington University, School of Medicine and Health Sciences. Dr. Hinds received her undergraduate degree magna cum laude from the University of Vermont, Burlington, VT and her M.S.N. and Ph.D. degrees from the University of Arizona, Tucson in Psychiatric Nursing (summa cum laude) and Clinical Nursing Research. For more than three decades, Dr. Hinds has created and led research related to the pediatric cancer experience, quality of life, fatigue and altered sleep during the treatment of pediatric cancers, and end-of-life communication and decision making. She served on the Institute of Medicine (IOM) committee on end-of-life and palliative care for children in America (2003) and the National Quality Forum panel on palliative and end-of-life care in America, the Institute of Medicine (IOM) committee on Dying in America (2014) and then on the National Academies of Sciences, Engineering and Medicine Roundtable on Quality Care for People with Serious Illness (2016-2020), the Committee on Childhood Cancers and Disability (2020-2021), and the NCI Moonshot Tolerability Steering Committee (2019-present). She represents patient-reported outcomes for two treatment protocols of the Children’s Oncology Group.

Seth Hollander

Seth Hollander is a Clinical Professor of Pediatrics in the division of cardiology at Stanford University where he currently serves as the Medical Director of Cardiac Transplantation and the Associate Section Chief of Pediatric Advanced Cardiac Therapies Program. His primary clinical focus is in the care of children and young adults throughout the heart failure trajectory, including those on medical therapy, requiring mechanical circulatory support, and after heart transplantation. In addition to teaching, mentorship, and administrative duties, Dr. Hollander maintains an active research program in patient outcomes, palliative care, and transplantation medicine. He is a member of the executive committee and serves as Stanford’s site principal investigator for the multi-center, extramurally funded TEAMMATE Study and is a founding member of the COLLABORATORY, a multi-disciplinary research collaborative studying the end-of-life experience and ethical issues related to children with cardiac disease.

Emily Johnston, MD, MS

Dr. Johnston is pediatric oncologist and Assistant Professor of Pediatrics at the University of Alabama at Birmingham, where she is a member of the Institute for Cancer Outcomes and Survivorship and the Center for Palliative and Supportive Care. Her long term goal is to establish quality measures for with complex chronic conditions and leverage those measures to reduce disparities in care.

Beth Kaufman

Bio forthcoming.

Blyth Lord

Blyth Lord is the founder and Executive Director of Courageous Parents Network, a nonprofit Web and Mobile platform that empowers parents caring for children with serious illness, including the promotion of pediatric palliative care. Blyth's daughter, Cameron, died of Tay-Sachs disease in 2001. Prior to founding Courageous Parents Network, Blyth worked for over 20 years as a television producer, including at WGBH in Boston, and ABC News in Washington, and she produced the award-winning film, Cameron’s Arc, with the American Academy of Pediatrics to educate primary care pediatricians in working with families from the time of diagnosis through to the end-of-life. Blyth is also a trustee of the Cameron and Hayden Lord Foundation which funds pediatric palliative care research and programming and medical research for treatments of lysosomal storage diseases; and a board member of that patient organization National Tay-Sachs and Allied Disease. Blyth is the recipient of the 2021 Presidential Citation from the American Academy of Hospice and Palliative Medicine as well as a 2022 TORCH award for patient advocacy from Sanofi. Blyth received her BA in History from Yale College, has a Masters in Education from Harvard, and lives in Massachusetts.

Emily Morell, MD

Bio forthcoming.

David Mauser, MD

David Mauser is a pediatric palliative care physician and Clinical Assistant Professor of pediatrics in the Division of Quality of Life and Pediatric Palliative Care at Lucile Packard Children’s Hospital / Stanford School of Medicine. Dr. Mauser received his medical degree at the University of Louisville School of Medicine in 2014. He then completed residency in pediatrics at Lurie Children’s Hospital / Northwestern University and fellowship in pediatric hospice and palliative medicine at Texas Children’s Hospital / Baylor College of Medicine. Dr. Mauser’s clinical and academic interests include caring for children with severe neurologic injury, process and quality improvement surrounding withdrawal of life sustaining therapies, and health equity for patients receiving palliative care.

Asha Nair, MD

Asha Nair is a Pediatric cardiac intensive care physician and Clinical Assistant Professor of Pediatrics at Stanford University. Prior to her time at Stanford, she was a cardiac intensive care physician at Boston Children’s Hospital. Her clinical focus is the care of critically ill children and adults, including those with multi-organ failure, requiring mechanical circulatory support and ventricular assist devices. Her passion lies in improving the lives of children and families across the spectrum of illness, namely supporting families with complex fetal diagnoses and navigating end-of-life care. This led her to obtain her Certificate in Clinical Pediatric Palliative Care through the CSU Shiley Haynes Institute for Palliative Care.

Kimberly Pyke-Grim, PhD, RN, CNS, CPHON

Nurse Scientist in the Department of Nursing Research and Evidence-Based Practice | Clinical Assistant Professor, Division of Hematology/Oncology, Department of Pediatrics | Stanford Medicine Children's Health /Co-Chair of the Children's Oncology Group Return of Results Committee/Co-Chair of the International Family Nursing Association Ethics Committee

Johnathan King Lecture Announcement

As part of the Innovations conference, we are partnering with the Stanford Center for Biomedical Ethics for the 34th Annual Jonathan J. King Lecture. Please note the Division of Quality of Life and Pediatric Palliative Care is co-sponsoring the reception following the King Lectureship. Learn more below, including registration information.