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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

Betty Davies oral history transcript.

Dr. Betty Davies begins with several stories about her first dying patients as a young professional and the gaps in both her education and the humanity about how death was handled in the hospital setting. Dr. Davies felt that cultivating dialogue about death, dying, and bereavement was a very important “human activity,” that was being neglected. Early into her career, Dr. Davies connected with other likeminded professionals who supported her while she endeavored to give trainings and workshops. She then recalls her work in developing Canuck Place as well as her contributions to research, programs, and the international knowledge base for pediatric palliative care. Dr. Davies explores some of the challenges she faced in her career as well as her perspective on how the field has grown. She concludes with her dream for seamless and continuous care to be available to children in need of pediatric palliative services.

Davies, Betty

Frances Dominica oral history transcript.

Sister Frances Dominica begins the interview by describing one particular experience early on in her pediatric nursing career that influenced her to found Helen House, the first pediatric respite and hospice house. Helen House implemented a comfortable, homey, and respite hospice model for chronically sick children. Sister Dominica also describes some of her guiding principles of having the children and the families take an active role in shaping their experiences at the Helen House, and eventually at the Douglas House. She then describes some of the early practices of pain management as well as the influence that others in palliative and hospice movements had on her development of pediatric hospice. Sister Dominica also recalled some of the generosity and support for Helen House that the surrounding community displayed. Sister Dominica then goes on to describe some of her international experiences. She concludes with her wish for the pediatric hospice field to reexamine and reinforce the role of family in the care of sick children as well as her recommendation of watching the BBC television series’ that depicted some of the stories of families and patients in the Helen House.

Dominica, Frances

Ida Martinson oral history transcript.

Dr. Martinson recalls her career in children dying at home beginning after a backyard conversation with her neighbor and mentor Dr. John Kersey. Dr. Kersey had mentioned that a child with cancer was going to be admitted to the hospital to die. Dr. Martinson questioned the “common practice” of admitting patients who were actively dying to the hospital. After that conversation, she was drafted by Dr. Kersey to assist in the same child’s healthcare. Dr. Martinson then describes her experience with preforming one of the first documented case studies of supporting a child to die at home with their family. She relates her motivation to help the child die with dignity at home to her own profound experience with helping her father in-law pass at home surrounded by family. Dr. Martinson describes her early experiences with clinicians who offered some resistance and skepticism about allowing children to die at home, but she also states that she was supported by most physicians. Dr. Martinson continues by describing how she continued her work to allow other children to die at home and how she grew the practice of dying at home by making herself available for other nurses and health care professionals internationally. Dr. Martinson then mentions the complexities of maintaining and growing her research in the field of dying at home. She concludes with her vision of the field growing to incorporate community medicine and respite care into priorities for healthcare teams for children suffering with chronic diseases.

Martinson, Ida

Ann Goldman oral history transcript.

Dr. Ann Goldman begins the interview by identifying some early field experiences as an oncologist researcher and observing service gaps in clinical patient care that didn’t acknowledge the psychosocial needs of families with chronically ill children. As Dr. Goldman was attempting to find guidance to develop her idea of providing more holistic care, she was met with some unease by peers and a discouraging message from Dame Cicely Saunders to not pursue this notion.

Undaunted and driven by her innate knowledge that this idea was right, Dr. Goldman then describes her experience of being demoted in hospital hierarchy to “invent a job,” where she could establish a pain and symptom management service for pediatric patients with palliative care elements. She describes that she developed her team model from influences in pediatric pain and the adult palliative care field.

Dr. Goldman was met with several challenges to her pain and symptom service. For example, there were no training resources for her multidisciplinary team. She also noted the importance of the relationships she developed that allowed her to expand beyond the oncology department.

Dr. Goldman describes one of her proudest achievements being her role in legislative and public advocacy to help bring about the recognition of pediatric palliative care as a specialty and to develop training materials for providers globally through her charity work Together for Short Lives.

Dr. Goldman concludes the interview with her vision of pediatric palliative care expanding outside of resource rich countries and helping resource poor countries achieve a greater degree of accessibility and to reduce the gap between children who need palliative care and children who don’t receive it.

Goldman, Ann

Joan Marston oral history transcript.

Ms. Marston introduces her career beginnings as a response to the HIV/AIDS crisis in South Africa and describes some of the memorable experiences with youth she cared for. She explains her role in the initial implementation of pediatric palliative day care and home care as well as some of the challenges around growing provider, political, and community education in South Africa. Ms. Marston then talks about her international experiences meeting other in pioneers in the pediatric palliative care field. She touches on her work in developing hospice programs as well as some of the global challenges she’s experienced while establishing palliative care programs. Ms. Marston then goes on to itemize some of the challenges she’s faced in her career and successful methods to counteract those barriers. She concludes with her vison of child palliative care to be integrated into universal health coverage and “accessible to every child’s needs.”

Marston, Joan

Stephen Connor oral history transcript.

Dr. Stephen Connor begins by describing some of his early professional experiences and mentors who supported him as he developed his interest in death and dying. Dr. Connor explains that after several “epiphany moments” and observing some of the death and dying practices abroad, he and several other like-minded professionals said: “You know, really, we should just start a hospice.” Dr. Connor then describes his early professional experiences of co-founding some of the earliest hospice programs in the United States, which drove his career from local hospice programming to national programming and finally into the international programming, research, publications, and evidence-based practices for the new fledgling field of children’s palliative care. Dr. Connor shares stories of pivotal moments from his career journey, which spans from the beginning of the pediatric palliative field, through the HIV/AIDS pandemic, all the way to the present. He explores multiple topics such as pain management, policy, program design as they relate to palliative care across the lifespan and from domestic to global socio-economic and techno-political differences. Dr. Connor explains the many ways children’s palliative care has changed since the field developed, as well as some of the barriers and successes he’s seen. Dr. Connor concludes with his goals for the future of pediatric palliative care to be accessible, policy protected, and serving the need for bereavement services.

Connor, Stephen

Charles Corr oral history transcript.

Dr. Charles Corr begins by explaining how his career in pediatric death, dying, and bereavement began “almost accidently” as he stepped into the instructor role of a death and dying course in the mid-1970s. After that experience, Dr. Corr focused more on teaching classes on children and dying and gathering experiences alongside clinicians in the pediatric palliative field. He explains that as a trained academic writer, he was grateful when pediatric clinicians, patients, and families allowed him to share in their experiences and write them up. Dr. Corr goes on to describe the changes he’s experienced in the field that have removed some of the barriers he experienced in his early career, as well as the strengths of the multidimensional care he has experienced in the field. Dr. Corr ends by identifying patient transitions and seamless care models for patients, especially those that age out of pediatric care, as next frontier for this field.

Corr, Charles

Gary Walco oral history transcript.

Dr. Walco discusses his career beginnings in pediatric pain medicine. He describes field observations of “barbaric” practices that were founded on the notion that children did not experience pain the same way adults do. Dr. Walco recounts some landmark events in the 1980s and 1990s that gained public notoriety and aided in developing the field of pediatric pain medicine, including the Jeffrey Lawson case-study of a premature baby who was administered thoracic surgery while awake and conscious. Dr. Walco then describes early experiences in a field with general disregard for the pain and suffering ofpediatric patients. The need for pediatric health care advocacy drove him to connect with other health care providers to investigate multi-disciplinary, multi-organizational level solutions to improving the quality of life for pediatric patients. Dr. Walco describes the barriers and successes he has experienced in pain medicine as the sub-specialty has evolved in the last thirty-five years. Dr. Walco also describes the vision he seeks to achieve within pediatric pain medicine, as well as the work he is doing to continue to advance the field in establishing the best evidence-based practices.

Walco, Gary

Pamela Hinds oral history transcript.

Dr. Pamela Hinds begins by identifying some early experiences in her nursing career that led her towards a career in pediatric palliative care. She recalls some of the challenges of funding research and reframing some of the discipline’s stigma around child-death from “physician failure” to a patient and family-informed process of the bio-psycho-social changes that were happening to the child. Dr. Hinds goes on to describe some of the successes in pediatric palliative care being the cultivation of the multi-disciplinary then interdisciplinary team approach as well as the changes in the relationship between providers and families. Dr Hinds describes the on-going challenges in pediatric palliative care being credibility, funding, and policy, but she relays her excitement to continue to help develop this specialty into a vision of patient-first advocacy and patient choice.

Hinds, Pamela

Marcia Levetown oral history transcript.

As an intensivist, Dr. Levetown noted three things: 1. a large proportion of critically ill kids were actually “chronically dying.” 2. families’ information about their child’s condition was incomplete or inaccurate and, feeding unrealistic hopes and influencing decisions based on outcomes that “were really not on the table.” And 3. family units were often overwhelmed by the child’s illness, too often leaving the family unit in varying levels of social, physical, mental, and emotion ruin.

Dr. Levetown described her early experience with palliative care and hospice, her involvement with several research projects on reforming the culture of death at the academic level, the history of pediatric palliative care as a field and some of the early challenges implementing palliative care in a hospital setting. T he profound gratitude of patients’ families whom she accompanied through the end of life was an important counterbalance to the experience of being shunned by colleagues, who had dubbed her “Doctor Death.”

Dr. Levetown identifies several persistent barriers to pediatric palliative care, including funding, professional acceptance, availability/capacity of clinicians, and burdens on patient-family, such as time, effort, transportation, and funds. Dr. Levetown then explains with her vision of expanding both physical and financial accessibility of pediatric palliative services, community integration of palliative services, and revitalizing explorations into the biopsychosocial life stages of children and adolescents that have life-limiting conditions.

Levetown, Marcia

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