Death and Dying: A Population Health Perspective
Tuesday, February 12, 2019
8:30 a.m.–2:05 p.m.
Death is a universal experience. Yet we seldom discuss it, and even more infrequently do we discuss death at the population level. This symposium aims to change the conversation around death by examining different perspectives at the population level, focusing on where and how people die and how we react to death. Our hope is that by shifting the national conversation on dying, we can elevate our aspirations for living.
Cohosted with Boston University College of Communication, Boston University College of Arts & Sciences Center for the Humanities, Boston University School of Public Health Program for Global Health Storytelling, and the Pulitzer Center.
DYING–STRATEGIES FOR EXERCISING CONTROL
8:30 a.m. – 8:45 a.m.
Dean and Robert A. Knox Professor, Boston University School of Public Health
Executive Director, Pulitzer Center
Jon Sawyer is executive director of the Pulitzer Center. The center partners with major newspapers, magazines, and broadcast outlets as well as universities and high schools across the United States. It has won an Emmy for new approaches to news and documentary, the Asia Society’s Goldman Sachs Foundation Prize for best use of technology in international education, and best online journalism prizes from the National Press Foundation, the Society of Professional Journalists, and the National Press Club. Sawyer’s projects for the Pulitzer Center have included reporting from the Democratic Republic of the Congo, India, Bangladesh, China, Haiti, and the Caucasus. His work has been featured in the Los Angeles Times
, The Atlantic
, The Washington Post
, al Jazeera English, Nieman Reports
, To the Point
, and PBS NewsHour
. He was co-executive producer of “LiveHopeLove.com,” the center’s Emmy Award-winning website on HIV in Jamaica, and also of The Abominable Crime
, a feature-length documentary on homophobia and stigma. He was also executive producer of Searching for Sacred Mountain
, a short documentary on the intersection of religion and environment in China. Sawyer was previously the St. Louis Post-Dispatch
Washington bureau chief. His assignments took him to some five dozen countries, with special projects ranging from Africa, the Caribbean, and Latin America to Eastern Europe, the former Soviet Union, the Middle East, the Balkans, and China. His work has been honored by Investigative Reporters and Editors, the Overseas Press Club, the Inter-American Press Association, and the School of Foreign Service at Georgetown University. Sawyer was selected three years in a row for the National Press Club’s prize for best foreign reporting. He holds a BA from Yale University and has held journalism fellowships at Princeton, Harvard, and Columbia universities.
8:45 a.m. – 10:15 a.m.
PART ONE: LIVING-HOW WE THINK ABOUT DEATH
Barbara Ehrenreich is the author of over a dozen books, including The New York Times
bestseller Nickel and Dimed
. She has a PhD in cellular immunology from Rockefeller University and writes frequently about health care and medical science, among many other subjects. She lives in Virginia.
Food Provocateur and Author
For the past 20 years Michael has been following the mandate: my client is civilization. His projects have turned into international movements and impacted millions. His second book Let’s Talk About Death
published by Hachette/Da Capo will be available in the U.S., U.K., and Australia in October of 2018. Michael recently became a Partner at RoundGlass to further expand his efforts to impact global well being.
Michael is the Founder of Deathoverdinner.org, Drugsoverdinner.org, EarthtoDinner.org, WomenTeachMen.org and The Living Wake. He currently serves as a Board Advisor at the Friedman School of Nutrition Science and Policy at Tufts; and in the recent past as Senior Advisor to Summit Series, Theo Chocolate, Learnist, Caffe Vita, CreativeLive, Architecture For Humanity, ONETASTE and Mosaic Voices Foundation.
In 1997 Hebb co-founded City Repair and Communitecture with architect Mark Lakeman, winning the AIA People’s Choice Award for the Intersection Repair Project. In 1999 Michael and Naomi Pomeroy co-founded Family Supper in Portland, a supper club that is credited with starting the pop-up restaurant movement. In the years following they opened the restaurants clarklewis and Gotham Bldg Tavern, garnering international acclaim.
After leaving Portland, Hebb built Convivium/One Pot, a creative agency that specialized in the ability to shift culture through the use of thoughtful food and discourse based gatherings. Convivium’s client list includes: The Obama Foundation, Robert Wood Johnson Foundation, TEDMED, The World Economic Forum, Bill and Melinda Gates Foundation, Clinton Global Initiative, X Prize Foundation, The Nature Conservancy.
Michael is the founding Creative Director of The City Arts Festival, the founder of Night School @ The Sorrento Hotel, the founder of www.seder.today and the founding Creative Director at the Cloud Room. He served as a Teaching Fellow at the Graduate School of Communication at University of Washington. His writings have appeared in GQ, Food and Wine, Food Arts, ARCADE, Seattle Magazine and City Arts. Michael can often be found speaking at universities and conferences, here is his TEDMED talk.
Andre Hellegers Professor of Biomedical Ethics, Georgetown University and Acting Director, Kennedy Institute of Ethics, Georgetown University
Dr. Sulmasy is Acting Director of the Kennedy Institute of Ethics and a Senior Research Scholar. Dr. Sulmasy holds a joint appointment at the Pellegrino Center for Clinical Bioethics. He is the inaugural Andre Hellegers Professor of Biomedical Ethics, with co-appointments in the Departments of Philosophy and Medicine at Georgetown.His research interests encompass both theoretical and empirical investigations of the ethics of end-of-life decision-making, ethics education, and spirituality in medicine. He has done extensive work on the role of intention in medical action, especially as it relates to the rule of double effect and the distinction between killing and allowing to die. He is also interested in the philosophy of medicine and the logic of diagnostic and therapeutic reasoning. His work in spirituality is focused primarily on the spiritual dimensions of the practice of medicine. His empirical studies have explored topics such as decision-making by surrogates on behalf of patients who are nearing death, and informed consent for biomedical research.He continues to practice medicine part-time as a member of the University faculty practice. He completed his residency, chief residency, and post-doctoral fellowship in General Internal Medicine at the Johns Hopkins Hospital. He has previously held faculty positions at Georgetown University and New York Medical College. He has served on numerous governmental advisory committees, and was appointed to the Presidential Commission for the Study of Bioethical Problems by President Obama in April 2010.He is the author or editor of six books: The Healer’s Calling
(1997), Methods in Medical Ethics
(2001; 2nd ed. 2010), The Rebirth of the Clinic
(2006), A Balm for Gilead
(2006), Safe Passage: A Global Spiritual Sourcebook for Care at the End of Life
(2013), and Francis the Leper: Faith, Medicine, Theology, and Science
(2014). He also serves as editor-in-chief of the journal Theoretical Medicine and Bioethics
.Dr. Sulmasy holds a Ph.D from Georgetown University and an M.D from Cornell University. He joins us from the University of Chicago, where he was Kilbride-Clinton Professor of Medicine and Ethics in the Department of Medicine and Divinity School, Associate Director of the MacLean Center for Clinical Medical Ethics in the Department of Medicine, and Director of the Program on Medicine and Religion.
Author and RN, Providence Elderplace
Sallie Tisdale is the author of nine books, most recently Advice for Future Corpses (and Those Who Love Them)
. Her other books include Talk Dirty to Me
, Stepping Westward
, and Women of the Way
. Her collection of essays, Violation
, was published in 2015 by Hawthorne Books. Her work has appeared in Harper’s
, Antioch Review
, Threepenny Review
, The New Yorker
, and Tricycle
, among other journals. Tisdale has worked as a registered nurse for many years, and has spent the last decade in palliative care, in a nationally recognized PACE program in Portland, Oregon. Tisdale is the senior lay Dharma teacher at Dharma Rain Zen Center, a Soto Zen temple. She teaches part-time in the writing program at Portland State University.
Assistant Professor, Government, College of Arts and Sciences, Cornell University
Jamila Michener, PhD is a professor in the department of Government at Cornell University. She studies American politics and public policy with a focus on the political causes and consequences of poverty and racial inequality. She is author of Fragmented Democracy: Medicaid, Federalism and Unequal Politics (Cambridge University Press). Michener’s research has been supported by the Institute for Research on Poverty, the Woodrow Wilson Foundation, the Russell Sage Foundation, the National Science Foundation, the Robert Wood Johnson Foundation and the Ford Foundation. Her public writing has been featured in the New York Times, the Washington Post, Vox, the American Prospect and TalkPoverty. Her public commentary has also appeared in many places including Vox, Slate Magazine, Jacobin Magazine, Pacific Standard Magazine, Wisconsin Public Radio and New York Public Radio. As an engaged scholar, Michener is co-leader of the Finger Lakes chapter of the Scholars Strategy Network, an organization focused on bringing academic research to policymakers, civil associations, and the media. Michener also sat on the advisory board of the Cornell Prison Education Program (2015-18) and teaches in local correctional facilities. Prior to working at Cornell, she was a Robert Wood Johnson Health Policy Scholar at the University of Michigan. She received her MA and PhD from the University of Chicago and her undergraduate degree from Princeton University.
Much of Michener’s work focuses on health policy and inequality. Her first book, Fragmented Democracy, argues that geographic disparities in U.S. healthcare provision shape democratic citizenship among the most marginalized Americans. Demonstrating how federalism transforms Medicaid beneficiaries’ interpretations of government and structures their participation in politics, the book reassesses American political life from the vantage point(s) of those who are living in or near poverty, (disproportionately) Black or Latino, and reliant on a federated government for vital resources.
Senior Science Writer, STAT
Sharon Begley has been the senior science writer at STAT
since its 2015 launch, covering basic biomedical research in genetics, neuroscience, oncology, and more. Previously she was the senior health and science correspondent at Reuters, the science editor and science columnist at Newsweek
, and the science columnist at the Wall Street Journal
. She is also the author of several books, most recently Can’t. Just. Stop: An Investigation of Compulsions
10:15 a.m. – 10:30 a.m.
10:30 a.m. – noon
PART TWO: DYING–STRATEGIES FOR EXERCISING CONTROL
Associate Professor, Radiation Oncology, Harvard Medical School; Senior Physician, Radiation Oncology, Dana-Farber Cancer Institute; and Clinical Director, Supportive and Palliative Radiation Oncology Service, Dana-Farber/Brigham and Women’s Cancer Center
Tracy Balboni, M.D., M.P.H. currently serves as an Associate Professor of Radiation Oncology at Harvard Medical School, and acts as Director of the Supportive and Palliative Radiation Oncology Service at the Dana-Farber/Brigham and Women’s Cancer Center – a service dedicated to the palliative radiation therapy needs of cancer patients. Dr. Balboni provides leadership to the Initiative on Health, Religion and Spirituality at Harvard University, together with Tyler VanderWeele PhD and Michael Balboni PhD. Her primary research interests are located at the intersection of oncology, palliative care, and the role of religion and spirituality in the experience of life-threatening illness. Her work also includes forging improved dialogue between academic theology, religious communities, and the field of medicine.
William Fairfield Warren Distinguished Professor of Health Law, Ethics & Human Rights and Director, Center of Health Law, Policy & Management, Boston University School of Public Health
Associate Professor and Associate Chair Director, Medieval Studies Program, Boston University
Amy Appleford is associate professor of English at Boston University: her areas of specialization include medieval religion and literature; legal, institutional, and urban history; and the philosophy and culture of death, medieval and modern. Her book, Learning to Die in London, 1380-1540
(University of Pennsylvania Press, 2015) is a study of the late medieval English artes moriendi
(arts of dying) understood in the widest sense: the articulation and use of texts, images, and practices around death and dying in London culture from the period immediately after the Black Death through to the first wave of monastic disendowment in the 1530’s. This project was supported by the Stanford Humanities Center and the Boston University Center for the Humanities. She has recently published on the pre-modern history of palliative care, on the origins of the “good death” movement, and on the intersections of medical, legal, and religious discourse in the perception and care of the mentally ill in medieval London.
Author and Journalist
Christopher de Bellaigue is an award-winning author and journalist. His work for the Economist
, the Guardian
, the New York Review of Books
, the BBC, the New Yorker
and The Nation
, among many other outlets, has covered an immense variety of subjects around the world. His most recent book, the Islamic Enlightenment
, was shortlisted for the Baillie Gifford Prize, the Orwell Prize and the al-Rodhan prize for Global Understanding. He has been a visiting fellow at the universities of Oxford and Harvard. His recent exploration of loneliness for the BBC World Service, A Life Alone
, is available as a podcast here: https://www.bbc.co.uk/programmes/p06mp41w
After practicing internal medicine and gastroenterology for 31 years in Washington DC, Sam retired six years ago to focus on writing and health care reform. He is the author of AT PEACE: Choosing a Good Death After a Long Life
(Hachette 2018), which addresses how the elderly can make better end-of-life decisions while navigating our overly aggressive healthcare system. He has contributed to the Washington Post
and the Bangor Daily News
. He now lives in Mid-Coast Maine where he co-authors a blog, Gap Year After Sixty
, with his wife of 46 years. When not writing or speaking, he splits woods and hauls lobster traps with his grandchildren. An honors graduate of Harvard College and the University of Wisconsin Medical School, he served on the board of trustees of Sibley Memorial Hospital, a member of the Johns Hopkins Health System, and also on the board of the former Hospice Care of DC. http://samharrington.com
Senior Producing Editor, Environment, WBUR
Barbara Moran is the senior producing editor for WBUR’s environmental vertical.
For more than 20 years, she has worked as a science journalist committed to covering issues of public health, environmental justice and the intersection of science and society. She has written for many publications including The New York Times, New Scientist, Technology Review and the Boston Globe Magazine, and produced television documentaries for PBS, The Discovery Channel, The History Channel and others. She was a Knight Fellow at MIT in 2001-2002, and was twice awarded the National Association of Science Writers’ highest honor, the Science in Society Award. She is also an adjunct professor of English at Boston College.
Her essay about her mother’s death, “Not just a death, a system failure,” appeared in The New York Times in 2016, and received more than 100,000 hits in the first 24 hours. She still gets emails about it.
noon – 12:30 p.m.
12:30 p.m. – 2:00 p.m.
PART THREE: GRIEF–AFTER WE DIE
Associate Professor, Global Health, Boston University School of Public Health
Associate Professor, Epidemiology, and Co-Director, Psychiatric Epidemiology Training Program, Columbia University Mailman School of Public Health
Katherine M. Keyes is an associate professor of epidemiology at the Columbia University Mailman School of Public Health. Katherine’s research focuses on life course epidemiology with particular attention to psychiatric disorders, including early origins of child and adult health and cross-generational cohort effects on substance use, mental health, and chronic disease. She is particularly interested in the development of epidemiological theory to measure and elucidate the drivers of population health, and in methodological challenges in estimating age, period, and cohort effects. She is the author of more than 200 peer-reviewed publications, and two textbooks published by Oxford University Press: Epidemiology Matters: A New Introduction to Methodological Foundation
, published in 2014 and Population Health Science
published in 2016.
Co-Director, Initiative on Health, Religion, and Spirituality, Harvard University and Brigham & Women’s Hospital
Michael Balboni, Ph.D., Th.M., M.Div, is an Instructor at Harvard Medical School and a psychiatry fellow at Brigham & Women’s Hospital. He holds a Ph.D. in theology from Boston University and completed post-doctoral training at the Harvard School of Public Health and at Harvard Divinity School. He received a career development award as a faculty scholar with the Program on Religion and Medicine at the University of Chicago. As a theologian, his focus has included the development of a theology of medicine and a concentration in the theological underpinnings related to spiritual care in a pluralistic, secular medical context. In addition, Michael works as a social-scientific researcher. His empirical projects currently focus on spirituality and religion and their associations with end-of-life medical utilization and patient outcomes. He is co-editor of Spirituality and Religion Within the Culture of Medicine: From Evidence to Practice, and the co-author (together with Tracy Balboni) of Hostility to Hospitality: Spirituality and Professional Socialization Within Medicine, which explores the manifestations of spirituality and religion within the socialization processes and institutional structures experienced by medical professionals.
Center Director, Center for the Humanities, Boston University
Susan L. Mizruchi has been working between disciplines throughout her career, earning B.A.s in both history and English from Washington University in 1981, and her Ph.D. in English from Princeton University in 1985 with a dissertation on nineteenth-century literature and historiography. Since coming to Boston University in 1986, she has focused on the intersection of social, religious, and literary studies. Her specialties are American literature and film, religion and culture, literary and social theory, literary history, and history of the social sciences. Her books include: Brando’s Smile: His Life, Thought, and Work
(Norton, 2014, 2015); The Rise of Multicultural America
(North Carolina, 2008) Becoming Multicultural: Culture, Economy, and the Novel
, 1860–1920 (Cambridge, 2005); The Science of Sacrifice: American Literature and Modern Social Theory
(Princeton, 1998); The Power of Historical Knowledge: Narrating the Past in Hawthorne, James, & Dreiser
(Princeton, 1988); and as editor, Religion and Cultural Studies
, (Princeton, 2001). She is the recipient of many academic honors, including fellowships from the Guggenheim Foundation, the Huntington Library, the National Endowment for the Humanities, and the Fulbright Scholars Program. She serves as Oxford University Press’s Delegate in Literature, Film, and Media Studies, and as a consultant for many foundations, among them, PBS (the American Master’s Series), ACLS, NEH, and the Princeton University English Department Advisory Council. She has been on the faculty of the Teachers as Scholars Program since 1999. She has directed thirty dissertations at BU and is the recipient of the Arts and Sciences Dean’s Award for Excellence in Graduate Education (2015), and a Distinguished Teaching Award from Boston University’s Honors Program (2001). She became the Director of the Boston University Center for the Humanities in July 2016. Her new initiative for the Center is expanding outward into the community and nationally, taking advantage of BU’s unique location in the center of Boston. Through programming and partnerships over the coming years she hopes to make the humanities at BU more central to the civic, state, national, and global communities. In 2017, she was named the inaugural William Arrowsmith Professor in the Humanities.
Chief Innovation & Advocacy Officer, Acclivity Health Solutions, and Board Member, Elisabeth Kübler-Ross Foundation
Dianne Gray is the President of Hospice and Healthcare Communications, (firstname.lastname@example.org), an international firm focused on creating and furthering advocacy projects and education/communications initiatives involving all aspects of end-of-life and palliative care, and the Chief Innovation and Advocacy Officer for Acclivity Health Solutions.
Dianne is a nationally recognized speaker, award winning writer/journalist, film producer, master collaborator and project director. She is also a passionate advocate for improved communication and care for seriously ill patients, their families and the loved ones they leave behind.
In addition to being a board member of the Elisabeth Kübler-Ross Foundation, Dianne also participates on the boards of International Children’s Palliative Care Network and the National Hospice and Palliative Care Organization’s Pediatric Leadership Council. She is also the co-chair of the American Academy of Pediatrics Section of Hospice and Palliative Medicine’s Parent Advisory Group. Over the past twenty years, she has founded four non-profit organizations, each focused on improving life for seriously ill children and their families.
She is collaborating with a variety of major media partners and hospice professionals to produce a wide array films, books and other exciting projects. Dianne is an intrepid traveler who enjoys connecting people everywhere. Over the past several years, she’s worked, hiked, adventured, and/or presented in 17 countries and over 100 cities.
Wherever she goes, Dianne also sits beside with the ill and the dying, and still sees her family’s ten year pediatric hospice/palliative care experience with her son, Austin, (who died in February 2005) as the gift of a lifetime.
2:00 p.m. – 2:05 p.m.