Washington University School of Medicine Oral Histories
Barbara Sourkes Oral History
Interviewer
Bryan Sisk MD, MSCI
Files
Download Interview Transcript [PDF] (151 KB)
Summary
Barbara Sourkes was interviewed by Brian Sisk on July 19, 2019 for approximately one hour and 17 minutes for the Pediatric Palliative Care Oral History Project.
Scope and Content
Dr. Sourkes attributes her career beginnings in pediatric palliative care to a “confluence” of personal and professional experiences. She describes knowing a few “pioneering” health professionals in the 1970s and 1980s. Iin different fields and different countries, these “first-generation” professionals were all working on their own to commonly define pediatric palliative care and its place in healthcare.
Dr. Sourkes recounts the early days when, in many hospitals, a handful of social workers took on all the psychosocial care of hundreds of children and families in pediatric hematology/oncology. Dr. Sourkes briefly discusses working with Balfour Mount MD when a group at the Montreal Children’s Hospital as developing an interdisciplinary pediatric palliative care team. . She discusses psychology/ psychiatry’s early role in understanding and interpreting childhood expression of suffering. At the time, despite the distress of families and healthcare professionals witnessing children experiencing pain, it was thought of as a “necessary evil” related to the use of intensive treatments. . She then explores an apparent early divide in psychology between research and clinical understanding of dying and suffering in children.
Dr. Sourkes reflects on her hospital experience in the 1980s and 90’s at the Montreal Children’s Hospital working with children and young adults with hemophilia who, as a result of treatment with blood products, were infected with HIV. Another group were child-refugees from Rwanda and Haiti, who had escaped unspeakable horrors, only to find out that they had been infected with the virus. She relates her experiences working with these especially vulnerable populations as having profound impact on her understanding of the complexities and influence of palliative care on a person’s healthcare. Dr. Sourkes describes her challenges to change language describing palliative care - and its benefits in a patient’s life to achieve the optimal health outcomes. Out of these clinical challenges, Dr. Sourkes was inspired to write her landmark books The Deepening Shade and Armfuls of Time.
Dr. Sourkes concludes with her two visions to further the field of pediatric palliative care. The first vision is to understand childhood suffering by exploring children’s expression and voice in their own health care. The second is to create and expand a narrative of pediatric palliative care that is educational and less overwhelming for institutions that interact with children, including schools, community centers, religious institutions, as well as the public.
Biographical Information: Interviewee
Barbara Sourkes, PhD, a child psychologist, is the first John A. Kriewall and Elizabeth A.Haehl Director of the Pediatric Palliative Care Program at Lucile Packard Children’s Hospital Stanford, and Professor of Pediatrics (and by courtesy, Psychiatry) at Stanford University. In addition to many articles and chapters, Dr. Sourkes has published three books: The Deepening Shade: Psychological Aspects of Life-threatening Illness (1982), Armfuls of Time: The Child’s Psychological Experience of Life-Threatening Illness (1995), and (with Michel Hanus, MD) Les Enfants en Deuil: Portraits du Chagrin [Bereaved Children, Portraits of Grief] (1997). She also co-edited (with Drs. Joanne Wolfe and Pamela Hinds) Textbook of Interdisciplinary Pediatric Palliative Care (2011). Dr Sourkes served as a member of the United States Institute of Medicine Committee on Palliative and End-of-Life Care for Children and their Families. She has won several awards, including the Outstanding Clinical Care award from the American Psychosocial Oncology Society (2011), the Humanities Award from the American Academy of Hospice and Palliative Medicine (2014) and the Compassion in Action Award from Hospice of the Valley (2016).
Biographical Information: Interviewer
Bryan Sisk, MD, MSCI is an Assistant Professor in Pediatric Hematology and Oncology and an Assistant Professor in General Medical Sciences as a member of the Bioethics Research Center at Washington University in St. Louis. He completed medical school at the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University. He completed his clinical training at St. Louis Children’s Hospital and Washington University School of Medicine.
Dr. Sisk was a clinical fellow in pediatric hematology and oncology when he initiated this Pediatric Palliative Care Oral History Project. As a trainee, Dr. Sisk had a strong interest in palliative care, the approach to the suffering of children, and the history of medicine. Prior to initiating this project, Dr. Sisk performed an in-depth review of the development of pediatric palliative care as a discipline and philosophy. This research culminated in a publication entitled, “Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children” in the journal Pediatrics. However, this historical review was limited to textbooks and publications. It lacked the personal experience of caring for these children and inspiring the development of a new clinical discipline. Inspired by David Clark’s oral history of the adult hospice movement, Dr. Sisk began to plan this pediatric oral history project.
Of note, this collection of oral histories is incomplete, and many important figures have not (yet) been interviewed. Dr. Sisk’s goal is to continue adding to this collection create a rich repository of personal insights and wisdom from leaders who changed the field of pediatrics.
Interview Date
2019-07-19
Collection Identifier
OH154-S32
Length
Approximately one hour and 17 minutes.
Restrictions
Users wishing to publish (in whole, or in part) content taken from the audio or transcript of this oral history interview must request, sign, and return a Statement of Use form to the Becker Archives. For detailed information regarding publication and use of this oral history, contact the Becker Archives (arb@wusm.wustl.edu).
Recommended Citation
Barbara Sourkes Oral History, OH154-S32, Bernard Becker Medical Library Archives, Washington University in St. Louis.
Disclaimer
The Becker Archives provides access to this oral history interview as a record of the past. This interview reflects the attitudes, perspectives, and beliefs of the interview participants, which may reflect outdated, biased, and offensive views and opinions. The Becker Archives does not endorse the views expressed in this interview, which may contain materials offensive to some users.
Notes
Access to the audio recording for this oral history may be obtained via approval of the archivists at Becker Library. Contact the archives for more information (arb@wusm.wustl.edu).