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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

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

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

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

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

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

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

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

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

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

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

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

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

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

Neil Schechter oral history transcript.

Dr. Neil Schechter begins this interview by describing the state of the pediatric pain field during the late 1970s. As he was training, he “felt it was a bit wrong” to have the disciplines dealing with physical and emotional/mental well-being so divorced from one another, especially with unaddressed psychosocial care for pediatric patients and families during complex chronic conditions such as cancer and sickle cell. Dr. Schechter also recalls a prevalent fear in the medical community of addicting children to pain medication, which kept clinicians from treating children’s pain at all.

Dr. Schechter questioned why pain was so chronically undertreated in pediatric patients and participated in numerous academic research inquiries into how to safely prevent pain. With a small community of like minds that he fostered, Dr. Schechter ventured forth into broadly exploring and reframing the way pain was thought of by clinicians. After Dr. Schechter began to develop a pediatric pain program at the University of Connecticut, he found that pain was often thought of as a psychological construct that was divorced from any biological implications. He worried that this commonly held theory was prolonging harm and suffering experienced by pediatric patients, while also weighing heavily on the clinicians that were referred to work with the suffering children. In several of his works, Dr. Schechter investigated common medical practices and concluded that many of them were causing unnecessary biological and psychosocial harm to children. He also challenged his clinician peers to think about why they would do something to children that they would not do to adults getting the same treatments.

Dr. Schechter discuss how his work built on the foundational work of his colleagues and peers. He recalls several instances he was able to rally similar minds to collectively publish research texts informing and advocating for medical practices to change. In his local institutions, Dr. Schechter was successful in advocating for institutional reform to improve care that was committed to causing no further biological or psychosocial harm to kids. This also spurred him to found the nonprofit ChildKind that is committed to aiding institutions in preventing pain for pediatric patients.

Dr. Schechter then goes on to describe the various challenges he faced in his career including peer clinician resistance, divisive national sensationalism of his work, and medical models that were incomplete or lacking in understanding of holistic human well-being. He also explains that some of the bad habits of the past are continuing into the present day practice.

He concludes the interview by describing practices that could be altered to achieve a better understanding of patient health, such as reexamining why hospitals don’t prevent needlestick pain when it is within their ability to do so. Dr. Schechter also celebrates the positive advances that have been made for pediatric pain.

Schechter, Neil

Susan Huff oral history transcript.

Ms. Susan Huff begins by identifying some of her experiences during the earliest practices of hospice in the U.S., including her work in developing a multidisciplinary team model that could provide a service to follow a patient through end of life. Ms. Huff also describes some of her work closing the provider education gaps around hospice philosophy, pain management, and communication.

Ms. Huff then describes her work bridging pediatric palliative and pain management programs. Ms. Huff also describes her role in many programs and projects that successfully demonstrated that her model of pediatric palliative and hospice care met the desires of patients and parents while working within the confines of limited funding.

Ms. Huff concludes the interview with her vision of furthering research on outcomes to empower programs to deliver the “seamless choices in care and access” that parents and patients deserve.

Huff, Susan

Richard Hain oral history transcript.

Dr. Richard Hain begins his interview by describing how his lifelong intentions of practicing in pediatrics developed into an intersecting interest in palliative medicine after hearing a lecture given by St. Christopher’s hospice. Dr. Hain then describes how he designed his medical school path to intersect at the disciplines of pediatric oncology, complex needs, pharmacology, and adult palliative medicine so that he would have the proper certifications to allow him the freedom to develop pediatric palliative to his vision: a multidisciplinary streamlined service with no barriers to access for those that needed the service. He says that while going through all that training would be “overkill now . . . it was well worth doing.”

Dr. Hain then describes how he began to form a community of like-minded healthcare providers in Wales that were able to develop and publish evidence of best practices for chronically ill and underserved children. This work eventually supported the discipline of pediatric palliative care becoming recognized as a subspecialty by the Royal College of Paediatrics and Child Health.

Early in his career, Dr. Hain was met with several resistant ideologies such as general disgust at the thought of administering children’s comfort care instead of solely cure-oriented care. Dr. Hain also described some discourse between clinicians that did not subscribe to recognizing pediatric palliative care “as a subspecialty within pediatrics and not a subspecialty within adult palliative care,” and some feelings from clinicians that pediatric palliative would take away from their practice rather than add another tool to health care. Dr. Hain also reflects on the role of opioids in palliative care, access and barriers to receiving pediatric palliative care, adult hospice and adult palliative care, the challenges the discipline has to overcome and the successes of in pediatric palliative. Dr. Hain then explains his future vision for pediatric palliative care; streamlined access to care where the clinicians fulfill a healthcare companion role rather than a sterile clinical relationship while also maintaining that the clinicians are the professionals with a knowledge base that continues to evolve with the discipline. Dr. Hain would also like there to be a larger community nursing infrastructure as well as simplified treatment methods of providing complex care at-home.

Hain, Richard

Blyth Lord oral history transcript.

Ms. Lord begins the interview by recalling her early experience with her daughter and nephew who were both diagnosed with Tay-Sachs disease, but experienced very different types of end-of-life care. Ms. Lord, her husband, and her daughter had a pediatrician that was willing to work and assemble a care team for the family and ultimately provide a rewarding end-of-life experience. Ms. Lord’s nephew’s pediatrician was not similarly equipped and his family experienced stresses, particularly at his end of life, because of that. After reflecting on her daughter’s journey, Ms. Lord wanted the level of care she experienced to be accessible for anyone with Tach-Sachs, thus began her career in advocacy.

Ms. Lord then describes how she and her husband and brother- and-sister-in-law were able to bring all of their familial support together to develop the non-profit, The Lord Foundation, to fund research of Tay-Sachs and the advancement of pediatric palliative care.

Ms. Lord’s background in television and video production then aided her in completing two multimedia projects, Cameron’s Arc, a project with the American Academy of Pediatrics about delivering palliative care from a community-based pediatrician, and Parenting a Child with a Life-threatening Illness, a resource for families affected by Tay-Sachs, GM1, Sandhoff and Canavan disease. Ms. Lord was motivated by positive feedback from clinicians using these movies to teach the new generation of clinicians. She soon left her job to focus full time on developing the Courageous Parents Network (CPN). Ms. Lord says the scope of CPN was initially just for parents, to promote palliative care and help parents hear from other parents through videos, but it has since grown into a large and reputable educational platform for parents and clinicians alike.

Ms. Lord then goes on to describe that one of the primary goals of Courageous Parents Network is to orient and empower families of children with life-threatening diseases as advocates and decision-makers for their child, and to promote palliative care as critical to helping make that possible.

Ms. Lord concludes the interview by describing a series of goals she has; for other parents and families, to know that they always have options and they are not alone; for clinicians, to foster the skillset of palliative care to be a holistic provider.

Lord, Blyth

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