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. In 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.