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Stacy Orloff oral history transcript.

Dr. Stacy Orloff begins the interview describing her experience after completing her MSW degree and one pivotal serendipitous event: she looked at the classified ads in the newspaper for the first time and found a job opening for a children’s program in her local hospice. After she took that position, she found that all her training in life led up to being a children’s advocate in the hospice setting. Dr. Orloff reflects on the beginning of the community-based hospice movement that now seems to provide fewer services than it was once able to due to the regulatory policies. She also describes some of the early challenges she faced with bridging the training gap to equip adult palliative and hospice clinicians with the necessary tools to care for children, even if they might only care for children a few times a year.

Dr. Orloff then recounts several stories of early palliative and hospice care practices that depict the early need for services designed and dedicated to children. Dr. Orloff also describes her experience finding and working with other interdisciplinary practitioners in creating global programming.

Dr. Orloff concludes with her goals of creating streamlined hospice and palliative services for families that also provide other practical services such as economic assistance and respite care. She envisions a time where all providers on the continuum of care can come to the table together to provide the best quality care for children without the barriers of practice “turfs.”

Orloff, Stacy

Ann Armstrong-Dailey oral history transcript.

Ms. Ann Armstrong-Dailey begins her interview by describing some early pivotal moments in her life that led her to a career advocating for palliative care. She first describes the memory of her and her mother fleeing kamikaze pilots and German submarines in Pearl Harbor, Hawaii and how that was a formative moment in understanding the processing power and tenacity of children. She then describes the circumstances of her brother’s death and the lack of support she received as a transformational moment that empowered her to “audaciously” seek out the global leaders of the world and ask them ‘why isn’t there support for dying children?’ Ms. Armstrong-Dailey then recalls two stories of children that were dying in a hospital and were blocked from receiving hospice care but were desperate to connect and support their parents and families as they died. She describes the momentous effect those deaths had on her and the urgency she felt to find a way to support better family communication and policy protections in pediatric healthcare.

Ms. Armstrong-Dailey tells how she built a supportive network of international collaborators who wanted to do better for dying children. She also describes instances where she rallied with this network to push ideas, legislation, literature, and healthcare models. Ms. Armstrong-Dailey describes some of her work exploring and dismantling some of the resistance she felt by providers and families with education and quantitative research. She concludes the interview by describing her dream of working herself out of business by integrating palliative care seamlessly into standard medical operating procedures. She also advocates for the continuation of investigations on how healthcare can perform better in communication with patients, families, and each other.

Armstrong-Dailey, Ann

Danai Papadatou oral history transcript.

Dr. Papadatou introduces her early beginnings in the field of pediatric palliative care and recalls several of influential figures in her life. These figures were “models of professionalism and humanity,” and included her father, her professor, and a 30-year-old woman with ovarian cancer who “made it a point to teach [physicians], advocate [for patients], and prove wrong all the prognostics.” Dr. Papadatou describes her international work in research, education, and her experience with organizing international events that incorporated some of the fields pioneers, such as Charles Corr, Elisabeth Kübler-Ross, Earl Grollman, Ida Martinson, Betty Davies, and many others. Dr. Papadatou then describes her work with seriously ill children in conjunction with the oncology department of her home hospital, as well as her research and policy contributions. She concludes with her perspective on how the field of pediatric palliative care can advance through a movement of interdisciplinary collaboration, communication, and planning.

Papadatou, Danai

Stephen Liben oral history transcript.

Dr. Liben credits his initial venture into pediatric palliative care to his experiences of witnessing “unnecessary suffering” during his career in pediatric critical care. Dr. Liben states that he was attracted to how much “promise” that pediatric palliative care held in addressing more than just the medical needs of children and their families.

He then recalls experiences he had with international leaders in the emerging field of pediatric palliative care. Dr. Liben describes how the field has evolved to be more patient- and family-centric while spanning across the intersections of pain management, chronic care, and complex care. Dr. Liben also discusses how he managed his team and developed integration strategies to become an established service in the hospital space. He recounts some of the initial challenges of educating other clinicians on what pediatric palliative care could bring to a health care team. He also reviews how much adult palliative and adult hospice have influenced and nurtured the pediatric care fields.

Dr. Liben then discusses his work in medical mindfulness with an emphasis on human connections and how he has experienced the “ultimate win-win,” with both healthcare teams and patients being happy with the connections and relationships forged. Dr. Liben concludes with his vision for current pediatric palliative care specialists to “teach ourselves out of a job,” and how he strives to cultivate the next generation of physicians in all specialties to have a holistic patient-first approach that incorporates his field’s mindfulness approach to care for more than just the physical, but also the “logical, spiritual, [and] emotional.”

Liben, Stephen

Barbara Sourkes oral history transcript.

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.

Sourkes, Barbara

Gerri Frager oral history transcript.

Dr. Gerri Frager begins by introducing the catalyst of her transition from nine years of nursing to her original career goal of medicine after some “really unfortunate episodes of care with patients of nursing.” She then describes the experiences and meetings she had with other emerging pioneers in the fields of pediatric pain and pediatric palliative. Dr. Frager discusses her work at the intersections of pediatric pain management and pediatric palliative care and the evolution of best practices in the field. Dr. Frager explains some of the successes and challenges in pediatric palliative and pain care as well as the simultaneous pioneering journey happening in adult palliative care. She concludes with her goals for the field to address communication barriers and establish great access to pediatric palliative and pain care, despite geographical, financial, and social barriers.

Frager, Gerri

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