Barbara M. Sourkes, PhD
Stanford University School of Medicine
AAHPM reached out to the 2024 Visionaries to gain insight into what motivated them to pursue leadership positions and what they find more fulfilling in their experiences. Barbara M. Sourkes, PhD has been recognized as one of the exceptional individuals chosen as a 2024 AAHPM Visionaries in Hospice and Palliative Care.
Who has most influenced your work and how have they shaped your contributions?
With gratitude to:
Theodore Roethke
I read his poem “In a Dark Time” as an undergraduate – and knew that someday these words would be a touchstone for me:
In a dark time, the eye begins to see.
I meet my shadow in the deepening shade.
Margaret Kiely PhD (Université de Montréal)
A psychologist who captured the essence of the living / dying continuum with incisive perceptiveness – and profoundly influenced my approach to psychotherapy.
Lois Jaffe MSW (University of Pittsburgh)
She taught an extraordinary seminar (in the 1970’s) on the impact of illness in the family – from her dual perspective as family therapist / patient living with leukemia. We conceptualized the book The Deepening Shade together.
Frederick Hetzel (Director, University of Pittsburgh Press)
He guided my books from initial concept through to publication with sensitivity and wisdom.
David Nathan MD (Harvard University)
As Chief of Pediatric Oncology at the Dana-Farber Cancer Institute, he supported me in developing a program of psychological services for children.
Balfour Mount MD (McGill University)
His palliative care unit was the inspiration for our developing a pediatric palliative care program at Montreal Children’s Hospital in the early 1990’s.
Hanna Strawczynski MD (McGill University)
A model of outstanding courage during the hemophilia / HIV crisis.
Jimmie Holland MD (Memorial Sloan-Kettering)
Founder of psycho-oncology, her contributions in the adult world mirrored my work in the world of children and led us to a years-long conversation.
And throughout:
My parents – my “teachers of the heart.”
The children and families whose lives have deeply touched me.
What is the significance to you of being recognized as a “Visionary” in Hospice and Palliative Medicine?
Being recognized as a “Visionary” is extremely meaningful to me as I look back on my work of the past decades. I have spent my entire professional life working with seriously ill children and their families.
When I began, in the 1970’s, we did not yet have the concept of “palliative care” as a field in pediatrics – it was still new even in the adult world. I am proud to have been part of an international, interdisciplinary group of professionals who laid the groundwork for this essential field.
In the 1970’s and into the 1980’s, I worked exclusively with children with cancer. At that time, most children did not survive. In the early wake of the 1980’s AIDS epidemic, I consulted to a hemophilia center with children who had contracted the virus through “tainted blood.” Whereas hemophilia had become a chronic, treatable condition, AIDS now superimposed a “death sentence” on their lives. The scope of my clinical work broadened to also include children with congenital HIV, thalassemia and neuro-muscular conditions.
It became increasingly clear to me – and many others – that while each illness had a trajectory and culture of its own – there were also commonalities that defined the experience for children, families and the professionals who cared for them. The recognition that we needed a conceptual and clinical rubric to integrate these universal principles led to the establishment of the field of pediatric palliative care.
What is your aspiration for the evolution of hospice and Palliative Medicine?
Pediatric palliative care has now passed from its infancy into its early years as an established interdisciplinary field. My (selected) aspirations for the field going forward include:
- “Concurrent care” is now conceptualized as the ideal model for the provision of care. I hope that this ideal transforms to “concurrent care as an affordable, accessible reality” for all children living with serious illness and their families.
- The ability to provide a true “seamless continuum” between hospital and home-based care. The rubric of pediatric palliative care includes seriously ill children with complex, chronic illness. Many of these children live for years, even decades – and families shoulder the weight of their care throughout their lives. Within this continuum, the provision of respite care is an urgent need for children and their families.
- A crucial need for the increased availability of psychological services for children as an integral part of their comprehensive care. In the words of a 6-year-old patient: “Every boy needs a psychologist! To see his feelings!” Psychotherapy is a form of treatment and can contribute powerfully to children’s coping and integration of the illness experience into their lives. This is equally applicable to the healthy siblings.. What is needed going forward are the mental health resources to sustain all the children through their extraordinary life circumstances.
I look forward to what the next generation of leaders and visionaries will accomplish!
Learn more about the AAHPM 2024 Visionaries in Hospice and Palliative Care and view a full list of all current and past Visionaries.