CONFERENCE SESSION DESCRIPTIONS
Wednesday, September 30th
KEYNOTE ADDRESS #1 - "Dignity for Deeply Forgetful People: Episodes of Unexpected Lucidity and their Meaning for Caregivers"
Speaker:
Stephen Post, PhD
Professor & Founding Director, Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University
Time:
9:45am-10:45am
Talk Description:
The word dementia has recently been removed from the DSM in favor of Major (or Minor) Neurocognitive Disorder. This is intended to help affected individuals, caregivers, and society to overcome the de-dignifying and derogatory metaphors that often cluster around the people with dementia (such as gone, shell, husk, etc.). We need to encourage a new mindset of noticing the continuing self-identity and capacities in these fellow humans. When we elevate the moral status of deeply forgetful people and learn to better communicate with them, compassionate care and resource availability can follow, including of course access to neuro-palliative care. Currently, in our hypercognitive culture, they are afforded little more than scraps and leftovers.
Speaker Bio:
An opinion leader and public speaker, Stephen G. Post, Ph.D. (University of Chicago, 1983) has served on the Board of the John Templeton Foundation (2008-2014), which focuses on virtue, spirituality and public life, and is a lifelong Member. Post is a leader in research on the benefits of compassionate care in relation to improved patient outcomes and caregiver well-being. At the University of Chicago, Post was a preceptor in both the Pritzker School of Medicine and in the University Core Humanities Program, while also serving as an Elected Fellow in the Nuveen Institute for Advanced Study. He went on to serve as professor of neurology and ethics at the Case Western Reserve University School of Medicine (1988-2008), where he founded and directed the nation's first Master's Program in Bioethics, of which there are now more than 80. After 20 years at Case he was invited to become Director of the Center for Medical Humanities, Compassionate Care & Bioethics in the Renaissance School of Medicine of Stony Brook University (2008-present). Post was co-recipient (2012) with Edmund D. Pellegrino MD of the Pioneer Medal for Outstanding Leadership in HealthCare from the National HealthCare Chaplaincy Network, and he received the Kama Book Award in Medical Humanities from World Literacy Canada (2008). Post addressed the U.S. Congress on volunteerism and health, receiving the Congressional Certificate of Special Recognition for Outstanding Achievement. Post has devoted most of his research and scholarship over four decades to caregiving for individuals with various forms of dementia. His 1995 book The Moral Challenge of Alzheimer Disease (John Hopkins) was designated a medical classic of the 20th century by the British Medical Association. His most recent book, also with Johns Hopkins, is Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer Disease (2022).
INPCS LIFETIME ACHIEVEMENT AWARD - "Building Community Partnerships to Improve Neuropalliative Care Across the Lifespan"
Speaker:
David Oliver, PhD, FRCP, FEAN
Honorary Professor, University of Kent
Time:
11:00am-12:00pm
Talk Description:
Palliative care has been provided for people with neurological disease from the early days of St Christopher's Hospice in London, UK. Over the years the role has developed with increasing awareness of the palliative care needs of people with neurological disease and the development of services supporting them. However, this is very variable across the World and the challenge for the future is the establishment of care for all people with neurological disease across the globe, with clear international guidelines and policies.
Speaker Bio:
David Oliver was Consultant Physician in Palliative Medicine and Medical Director at the Wisdom Hospice from 1984 to 2016. He is an Honorary Professor at the Tizard Centre at the University of Kent, at Canterbury. He has lectured and published widely on neurological palliative care. He was the Chair for the UK National Institute for Health and Care Excellence Guidelines on MND. He was first author of the EAN paper "A consensus review on the development of palliative care for patients with chronic and progressive neurological diseases." He has been involved in many projects across Europe. He is Past-Chair of the EAPC Reference Group on Neurology and Palliative Care, a member of the Management Group of the Palliative Care Specialty Group of the European Academy of Neurology and has been a Board member of the International Neuro-Palliative Care Society. He is a Fellow of the European Academy of Neurology.
"There But Not There: Ambiguous Loss and Neurology"
Speaker:
Linda Golding, MA, BCC
Chaplain, The Reservoir
Time:
2:00pm-3:00pm
Talk Description:
Loss can be personal, communal and global all at the same time. And what is a loss for one person might not be a loss for another. In neuropalliative care, we are faced every day with an unclear, uncertain progression of loss in our patients and their families. This kind of unresolving loss, "there but not there" was defined by Dr. Pauline Boss as Ambiguous Loss, and it has an effect on us as providers and clinicians. This interactive session will look at coping strategies for this very real and lasting loss, and consider the long range impact of ignoring the wear and tear of ambiguous loss on mind, body, and spirit. Bring patient stories!
Speaker Bio:
Linda S. Golding is a Board Certified Chaplain (APC) with a Masters Degree in Jewish Studies and Certificate in Pastoral Care and Counseling from the Jewish Theological Seminary. Her training as a Spiritual Director is through the Institute of Jewish Spirituality and the Mercy Center Burlingame (CA), and recently completed training in Psychosomatic Multi-Disciplinary Care through Columbia University Irving Medical Center. Golding served as a Coordinator of Spiritual Care (2010-2025) at NewYork-Presbyterian Hospital/CUIMC, where she was also the chaplain member of the hospital's Ethics Committee and its Organ Donor Council. She holds adjunct faculty positions in the Bioethics Masters program at Columbia University, Union Theological Seminar, Jewish Theological Seminary, and the Columbia School of Nursing, and leads bereavement and support groups addressing a broad range of emotional and spiritual needs.
INPCS OUTSTANDING SCIENTIFIC CONTRIBUTION AWARD: "Communicating About Neurologic Outcome: Lessons in Humility"
Speaker(s):
Monica Lemmon, MD
Associate Professor of Pediatrics and Population Health Sciences, Duke University School of Medicine
Time:
3:45pm-4:15pm
Talk Description:
In this session, Dr. Lemmon will discuss common challenges and opportunities that arise when discussing future neurologic outcome. She will highlight lessons learned from parents of critically ill children, with a focus on strategies and tools to improve how we study, estimate, and discuss neurologic prognosis.
Speaker Bio:
Dr. Monica Lemmon is an Associate Professor of Pediatrics and Population Health Sciences at the Duke University School of Medicine, where she serves as the Associate Dean for Scientific Integrity. Her clinical practice is in fetal and neonatal neurology, and she serves as the Chief of Pediatric Neurology and Developmental Medicine. Dr. Lemmon's NIH-funded research program centers on parent-clinician communication, shared decision making, and the parent experience of child illness.
"Goal-Directed Medical Decision-Making: What Belongs to the Patient and What Belongs to Medicine"
Speaker(s):
Amber Comer, PhD, JD
Director, Hall Center for Health Law, Indiana University Robert H. McKinney School of Law
Associate Professor, Indiana University School of Health and Human Sciences and School of Medicine
Time:
4:30pm-5:30pm
Talk Description:
Efforts to improve serious-illness decision-making have focused on helping patients and surrogates choose among the options presented to them. Large trials have improved the conversation without relieving the burden. This presentation argues that the problem begins earlier, with the act by which medical possibilities become patient choices at all. Goal-Directed Medical Decision-Making distinguishes what belongs to the patient from what belongs to medicine and asks why the remedy for paternalism became abdication rather than accountability. Through this framework, participants will learn to distinguish patient-defined goals from clinical judgments about the means of achieving them, differentiate disclosure from offering and recommendation, and identify when decisions properly belong to the patient, the clinician, or both.
Speaker Bio:
Dr. Amber Comer is an Associate Professor in the Indiana University School of Health & Human Sciences and the Indiana University School of Medicine. She also serves as Director of the Hall Center for Law and Health at the Indiana University Robert H. McKinney School of Law and is affiliated with the Center for Bioethics, the RESPECT Center, and the Regenstrief Institute. A nationally recognized palliative care researcher, bioethicist, and attorney, Dr. Comer is an expert in medical decision-making for critically ill patients, with a focus on neuropalliative care. Her research has informed clinical practice guidelines and contributed to changes in Indiana's Health Care Consent Law. Dr. Comer teaches courses in medical ethics, health law, and palliative care and has received numerous honors for her scholarship and teaching, including the Indiana University Trustees Teaching Award. She holds a PhD in Public Health, a JD with a concentration in Health Law, and completed a Medical Ethics Fellowship at Indiana University. She is also a member of the Indiana State Bar.
Thursday, October 1st
"Palliative Care for People with Dementia and Their Families: The IN-PEACE Trial"
Speaker(s):
Greg Sachs, MD
Professor of Medicine (retired/emeritus), Indiana University School of Medicine
Time:
8:30am-9:30am
Talk Description:
This session will discuss state of the art approaches to providing palliative care to people living with dementia and their families. It will highlight the approach taken in the IN-PEACE trial that resulted in reducing emergency department visits and hospitalizations by 50%. Challenges to implementing the IN-PEACE model and outstanding questions will be covered as well.
Speaker Bio:
Dr. Greg Sachs is a graduate of the University of Chicago and the Yale University School of Medicine. He completed his medicine residency and fellowship in geriatrics and clinical medical ethics also at the University of Chicago (U of C). He joined the U of C faculty in 1990 and went on to help launch its Section of Geriatrics (as founding chief), palliative care program, and dementia care center. Dr. Sachs moved to Indiana University (IU) in 2007 as Professor of Medicine and Neurology and Chief of the Division of General Internal Medicine and Geriatrics at Indiana University (IU) and Research Scientist in the IU Center for Aging Research and the Regenstrief Institute. He retired from IU in July 2026 having held an endowed chair in health services research and recipient of the IU School of Medicine's Excellence in Faculty Mentoring Award. Dr. Sachs's research and writing focus on ethical issues in dementia care, including palliative care for people with dementia. Dr. Sachs has been the recipient of grants from the National Institutes of Health, Centers for Medicare and Medicaid Services, and the leading foundations funding research in geriatrics, ethics, or palliative care. He has published over 150 articles in peer-reviewed journals, with two of his most notable papers being "Dying from Dementia", which appeared in The New England Journal of Medicine, and the results of the IN-PEACE study published in JAMA. Dr. Sachs has received the Outstanding Scientific Achievement for Clinical Investigation Award from the American Geriatrics Society (AGS) and was a Medical Honoree of the national Alzheimerâ' Association. He has taken on leadership roles in several organizations, including serving on the National Board of Directors of AGS, the editorial board of the Journal of the American Geriatrics Society, and chairing both the Academic Task Force and Leadership and Workforce Strategic Coordinating Committee for the American Academy of Hospice and Palliative Medicine.
TARA COOK AWARD FOR INNOVATION IN NEUROPALLIATIVE EDUCATION - "Goal-Directed Medical Decision-Making: What Belongs to the Patient and What Belongs to Medicine"
Speaker:
Tarini Goyal, MD
Clinical Associate Professor of Neurology, NYU Langone Health
Time:
9:45am-10:15am
Talk Description:
A discussion of the evolution of neuropalliative care education and exploration of next steps for educating the next generation of neurologists and palliative care providers effectively and sustainably.
Speaker Bio:
Tarini Goyal is a neurohospitalist and clinical associate professor of neurology at NYU Langone Health. Her interests in neuropalliative care include resident education and the integration of neuropalliative care in inpatient practice. Her work in neuropalliative care curriculum development and trainee experience has been published in journals including Neurology and the Journal of Palliative Medicine.
"Embedding Management of Progressive Communication Disorders Into Neuropalliative Care"
Speaker:
Gabriela Meade, PhD, CCC-SLP
Associate Consultant in Speech Pathology, Mayo Clinic (MN)
Time:
11:00am-12:00pm
Talk Description:
Changes to speech and language occur in many neurodegenerative diseases, simultaneously causing an increase in psychosocial distress and limiting access to psychotherapy and other resources. In this talk, Dr. Meade will discuss strategies for interprofessional collaboration between speech-language pathologists and palliative care teams to identify and meet the psychosocial needs of individuals with progressive speech and language disorders more effectively. She will also share preliminary data and insights from a study on the acceptability and feasibility of meaning-centered psychotherapy as an intervention approach for this population.
Speaker Bio:
Gabriela Meade, PhD, CCC-SLP is an Associate Consultant in the Division of Speech Pathology at Mayo Clinic in Rochester, Minnesota. She is also an Assistant Professor of Speech Pathology in the Mayo Clinic College of Medicine and Science. Dr. Meade's clinical care is focused on facilitating effective and efficient communication for individuals living with ALS. Her research interests include improving prognostication and maintenance of functional communication for individuals with speech- and language-led forms of frontotemporal dementia, including addressing how changes to communication contribute to social isolation and psychosocial distress. A proud Vermonter at heart, Dr. Meade received her BA in Cognitive Science from Dartmouth College before pursuing a MSc in Cognitive Neuroscience at Radboud University in the Netherlands. She earned her doctoral degree through the Joint Doctoral Program in Language and Communicative Disorders at San Diego State University and University of California San Diego.
"The Next Ascent Beyond Achievement: Where Medicine, Meaning and the Second Mountain Meet"
Speakers:
Melissa Ko, MD, MBA
Professor of Neurology and Ophthalmology, Indiana University School of Medicine
Shelley Varner-Perez, MDiv, MPH, BCC
Research Chaplain & Senior Program Manager, Spiritual Care & Chaplaincy, Indiana University Health
Research Director, Evans Center for Spiritual & Religious Values in Healthcare, Indiana University Health
Time:
2:00pm-3:00pm
Talk Description:
This session brings together a physician and chaplain to explore how moments of professional challenge and personal struggle can reshape the practice of neurological care. Drawing on their distinct yet complementary perspectives, they illustrate a shared journey towards more intentional, whole-person patient care that integrates physical, emotional, and spiritual needs for individuals with visual impairment. Attendees will gain insight into how meaning, resilience and interdisciplinary collaboration can deepen patient relationships and clinician purpose. The discussion highlights practical ways to move beyond achievement-driven care towards a more sustainable model of healing.
Speaker Bio:
Dr. Melissa W. Ko, MD, MBA, CPE joined Indiana University School of Medicine in 2019 and is a tenured Professor of Neurology and Ophthalmology. For over a decade prior, she served on faculty at SUNY Upstate in Syracuse, NY. Dr. Ko received her undergraduate degree in biology at Yale, medical school degree at the University of Rochester, and her residency and fellowship training at the University of Pennsylvania/Scheie Eye Institute/Children’s Hospital of Philadelphia. She is a Certified Physician Executive via the American Association of Physician Leadership and received her MBA from the University of Massachusetts-Amherst. Dr. Ko is an adult and pediatric neuro-ophthalmologist based at the IU Neuroscience Center. She has received recognition for her patient-focused care and was awarded by the SUNY Medical School Graduating Class of 2015 the Leonard Tow Humanism Award in medicine and inducted into the Gold Humanism Honor Society. New York State Assemblywoman Pamela Hunter named Dr. Ko the Exceptional Woman in Medicine in 2017. She is a graduate of the AAN Palatucci Advocacy Leadership Forum (PALF) to advocate for patients. On behalf of the AAN and neurological patients, Dr. Ko has met with Congressional leaders in Washington, DC nearly annually since 2010 to increase neurological education and research, to expand telehealth access for neurological patients, and to reduce medical costs for patients. She is the founder of Indiana Blind Tennis, an adaptive tennis program for youth and adults living with visual impairment and blindness. In addition to caring for patients, Dr. Ko is involved in neurology and neuro-ophthalmology leadership at the national and international level. She is an executive board member and elected the current President Elect of the North American Neuro-Ophthalmology Society (NANOS). She is Editor-in-Chief of the American Academy of Neurology (AAN) news and an editorial board member for Brain & Life magazine.
KEYNOTE ADDRESS #2 - "Doctor as Patient"
Speaker:
Bobby Mukkamala, MD
Immediate Past President, American Medical Association
Time:
3:15pm-4:15pm
Talk Description:
What happens when the physician becomes the patient? Dr. Bobby Mukkamala, immediate past president of the American Medical Association, draws on his own experience with brain surgery and recovery to offer a deeply personal perspective on the importance of timely access, affordable care, and a health system grounded in quality and trust. He will examine the role of physician leadership in removing barriers to care—prior authorization, affordability, and workforce shortages—and the AMA’s advocacy to advance meaningful change in these areas.
Speaker Bio:
A board-certified otolaryngologist-head and neck surgeon, Dr. Mukkamala returned to his hometown of Flint, Michigan, after residency to build a private practice with his wife Nita, an OBGYN, that is dedicated to serving the community that raised him. Throughout his career, he has combined compassionate patient care with a deep commitment to public health and physician advocacy. Dr. Mukkamala has been active in organized medicine since residency, serving in leadership roles at the state and national levels, including on the AMA Board of Trustees and as president of the nation's largest physician organization. In Flint, his leadership has extended beyond medicine, helping address the long-term effects of the water crisis and advancing efforts to improve the health and well-being of local families. Known for his warmth, optimism, and unwavering belief in the power of physicians to make a difference, Dr. Mukkamala reminds us that some of the most important work we do begins in our own communities.
