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Pediatric Palliative Care Oral History Project

  • OH154
  • Collection
  • 2019

In this oral history project, Dr. Bryan 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.

(*) 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.

Sisk, Bryan

William H. Danforth Papers

  • FC196
  • Collection
  • 1996 - 2019

This collection contains records of William H. Danforth, Chancellor Emeritus of Washington University in St. Louis, primarily related to his involvement with the Barnes-Jewish Hospital board. Includes correspondence and memoranda related to BJC and Washington University School of Medicine administration, circa 1996-2019, chiefly 1997-2003.

Danforth, William H. (William Henry)

Eric Stephanson oral history transcript.

Eric Stephanson oral history transcript.

Mr. Eric Stephanson begins the interview by describing his path into ministry and divinity and how that intersected over a lifetime, into a career in pediatric palliative and pediatric hospice care. Mr. Stephanson describes how spiritual guidance grew into the services offered at Canuck Place Children’s Hospice, the first free-standing North American children’s hospice, and how Mr. Stephanson took a chance opportunity to be on the first cohort of multidisciplinary professionals working to deliver palliative services to children in North America.

Mr. Stephanson then goes on to describe how his life experience as a minister helped prepare him to be “comfortable with being uncomfortable” as he approached families in crisis as their child became seriously ill. Mr. Stephanson describes his best teachers of whole human care to be the children themselves, their families, the nurses, and the social workers. He also describes the multidisciplinary model of health care at Canuck Place and how giving every team member, children and families included, a space to speak face to face and ask questions, resulted in people feeling they’ve received the utmost care and people would say “We just love coming to the hospice.”

Mr. Stephanson concludes with his desire to see that pediatric palliative care and pediatric hospice care become fully integrated. He also describes how holistic health care planning could better meet the needs of ill and suffering children by providing more freedom to switch between medical curative care and palliative care in a multidisciplinary model.

Stephanson, Eric

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