Pediatric Palliative Care Oral History Project

The Pediatric Palliative Care Oral History Project was initiated by Dr. Bryan Sisk, 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.

In this oral history project, Dr. Sisk performed interviews with 35 individuals with notable roles in the development of pediatric palliative care as a discipline and a philosophy. Dr. Sisk was a clinical fellow in pediatric hematology and oncology when he developed this project and performed the interviews. He had rigorous training in qualitative research and a strong interest in history related to children’s pain and suffering. Selection of participants was based on review of the historical literature for a prior publication related to this area (*). Additionally, Dr. Sisk asked interviewees for recommendations for other potential participants. During interviews, he followed an interview guide, but he also allowed the interviewee to redirect the conversation.

These interviews were all recorded remotely, either via telephone or video-conferencing software. Audio files were professionally transcribed and proofed for grammar and accuracy. Interviewees were allowed to review these transcripts and make grammatical corrections. Also, interviewees were allowed to suggest additions or retractions from the transcript to ensure their meaning was clear. We marked all additions with brackets and all retractions with ellipses. In consultation with the Washington University Institutional Review Board (IRB), this project was not deemed to be human subjects research, and thus was not subject to review by the IRB.

An oral history with Dr. Myra Bluebond-Langner was included as part of this project, but has restricted access. Please contact Becker Archives at arb@wusm.wustl.edu for more information regarding access.

(*) Sisk, Bryan A., et al. “Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children.” Pediatrics, Volume 145, Number 1, January 2020, e20191741.

WUSM Oral Histories Homepage

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Kanwaljeet S. Anand Oral History

Kanwaljeet S. Anand

Kanwaljeet S. Anand was interviewed by Brian Sisk on August 7, 2019 for approximately 58 minutes for the Pediatric Palliative Care Oral History Project.
Ann Armstrong-Dailey Oral History

Ann Armstrong-Dailey

Ann Armstrong-Dailey was interviewed by Brian Sisk on June 25, 2019 for approximately one hour and 25 minutes for the Pediatric Palliative Care Oral History Project.
Myra Bluebond-Langner Oral History

Myra Bluebond-Langner

Myra Bluebond-Langner was interviewed by Brian Sisk on July 17, 2019 for approximately one hour and 40 minutes for the Pediatric Palliative Care Oral History Project.
Brian S. Carter Oral History

Brian S. Carter

Brian S. Carter was interviewed by Brian Sisk on August 23, 2019 for approximately one hour and 2 minutes for the Pediatric Palliative Care Oral History Project.
Stephen Connor Oral History

Stephen Connor

Stephen Connor was interviewed by Brian Sisk on May 3, 2019 for approximately one hour for the Pediatric Palliative Care Oral History Project.
Charles Corr Oral History

Charles Corr

Charles Corr was interviewed by Brian Sisk on May 3, 2019 for approximately 54 minutes for the Pediatric Palliative Care Oral History Project.
Tomasz Dangel Oral History

Tomasz Dangel

Tomasz Dangel was interviewed by Brian Sisk on July 23, 2019 for the Pediatric Palliative Care Oral History Project.
Betty Davies Oral History

Betty Davies

Betty Davies was interviewed by Brian Sisk on June 19, 2019 for approximately one hour and 35 minutes for the Pediatric Palliative Care Oral History Project.
Frances Dominica Oral History

Frances Dominica

Frances Dominica was interviewed by Brian Sisk on May 20, 2019 for approximately one hour and 2 minutes for the Pediatric Palliative Care Oral History Project.
Kathleen Faulkner Oral History

Kathleen Faulkner

Kathleen Faulkner was interviewed by Brian Sisk on July 22, 2019 for approximately 58 minutes for the Pediatric Palliative Care Oral History Project.
Betty Ferrell Oral History

Betty Ferrell

Betty Ferrell was interviewed by Brian Sisk on August 22, 2019 for approximately 51 minutes for the Pediatric Palliative Care Oral History Project.
Gerri Frager Oral History

Gerri Frager

Gerri Frager was interviewed by Brian Sisk on June 17, 2019 for approximately one hour and 21 minutes for the Pediatric Palliative Care Oral History Project.
Sarah Friebert Oral History

Sarah Friebert

Sarah Friebert was interviewed by Brian Sisk on August 26, 2019 for approximately 52 minutes for the Pediatric Palliative Care Oral History Project.
Stefan Friedrichsdorf Oral History

Stefan Friedrichsdorf

Stefan Friedrichsdorf was interviewed by Brian Sisk on August 21, 2019 for approximately one hour and 5 minutes for the Pediatric Palliative Care Oral History Project.
Ann Goldman Oral History

Ann Goldman

Ann Goldman was interviewed by Brian Sisk on May 13, 2019 for approximately 47 minutes for the Pediatric Palliative Care Oral History Project.
Richard Hain Oral History

Richard Hain

Richard Hain was interviewed by Brian Sisk on July 8, 2019 for approximately one hour and 17 minutes for the Pediatric Palliative Care Oral History Project.
Ross Hays Oral History

Ross Hays

Ross Hays was interviewed by Brian Sisk on September 3, 2019 for approximately 53 minutes for the Pediatric Palliative Care Oral History Project.
Pamela Hinds Oral History

Pamela Hinds

Pamela Hinds was interviewed by Brian Sisk on July 19, 2019 for approximately 56 minutes for the Pediatric Palliative Care Oral History Project.
Susan Huff Oral History

Susan Huff

Susan Huff was interviewed by Brian Sisk on July 3, 2019 for approximately 51 minutes for the Pediatric Palliative Care Oral History Project.
Elliot Krane Oral History

Elliot Krane

Elliot Krane was interviewed by Brian Sisk on November 13, 2019 for approximately one hour and 3 minutes for the Pediatric Palliative Care Oral History Project.
Marcia Levetown Oral History

Marcia Levetown

Marcia Levetown was interviewed by Brian Sisk on April 17, 2019 for approximately 52 minutes for the Pediatric Palliative Care Oral History Project.
Stephen Liben Oral History

Stephen Liben

Stephen Liben was interviewed by Brian Sisk on June 20, 2019 for approximately 49 minutes for the Pediatric Palliative Care Oral History Project.
Blyth Lord Oral History

Blyth Lord

Blyth Lord was interviewed by Brian Sisk on July 11, 2019 for approximately one hour and 16 minutes for the Pediatric Palliative Care Oral History Project.
Joan Marston Oral History

Joan Marston

Joan Marston was interviewed by Brian Sisk on May 7, 2019 for approximately one hour and 2 minutes for the Pediatric Palliative Care Oral History Project.
Ida Martinson Oral History

Ida Martinson

Ida Martinson was interviewed by Brian Sisk on May 14, 2019 for approximately one hour and 3 minutes for the Pediatric Palliative Care Oral History Project.