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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.

Dr. Brian Carter begins the interview describing his early career journey exploring the intersectionality of bioethics and neonatology. Dr. Carter viewed some of the early practices of intensivists to “resuscitate people until they die” as exceptionally “egregious,” which prompted him to feel ‘ an obligation. . . to make inroads [to neonatal and pediatric palliative care] via the route of ethics: making better choices, trying to discern [the] right action.’

Dr. Carter then describes the evolution of early practices in neonatology that were visibly distressing to babies, and how the work of him and his peers around children experiencing pain began to change best practices in the field. This scholarly work in the fields of neonatal and pediatric pain helped to create systematic changes to pediatrics, including requiring pain and symptom management for children to be a part of hospital accreditation.

Dr. Carter concludes the interview by describing two of his dreams for the field of pediatric palliative care that would be beneficial to all children, families, and caregivers. The first dream is the ability for families to access hospital-level respite care for chronically and seriously ill children who require advanced medical technologies. The second dream is for increased access to pediatric hospices where children and families could go and be supported at the time of the child’s death.

Dr. Dangel begins the interview describing his experiences as a pediatric anesthesiologist witnessing children dying while receiving unnecessary aggressive treatment during the end-of-life. He also describes several pivotal experiences learning about and seeing other countries develop pediatric hospices. When he brought back his experiences to his home institution, he was not well received and consequently left to seek an environment to nurture his vision for pediatric palliative and hospice care.

Dr. Dangel comments that this was not his first time bringing new ideas into Polish medicine since he “introduced the modern techniques of regional anesthesia and analgesia in children,” in the 1980s. He then mentions that he was more than comfortable making the “conscious choice” to have his own “splendid isolation from the inhumane hospital medicine.”

He then describes the barriers he faced and overcame, such as lack of funding, training gaps for clinicians, no transportation for his staff, failing personal health, a research block from the ethnical committees in Poland, and “single case of malpractice at the medical court for using the ketogenic diet, which I designed for my hospice patient”.

Dr. Dangel goes on to describe his work in leading Polish medicine to establishing pediatric palliative and hospice care through his work in policy, peer-reviewed studies, publications, and books, public outreach, and coaching of other professionals. He also describes some of his biggest challenges today being lack of cooperation from the Polish government, lack of official accreditation, and government blocks on some palliative practices.

He then also describes the strengths of the current Polish practices of pediatric palliative and hospice to be the establishment of the Warsaw Hospice for Children Foundation who provide supportive services and organizational outreach as well as Polish societal values.

Finally, Dr. Dangel describes his vision for the future of pediatric and hospice care to be recognized as a branch of medicine in Poland, increase clinician knowledge and competency of palliative practices, increase the awareness and palliative training of other disciplines, such as gynecologists and obstetricians, establish a national research center, establish a journal of pediatric and perinatal palliative care, and to increase pediatric palliative and hospice consults with experts and ethics committees.

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.

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.

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.

Dr. Ross Hays begins the interview by describing how he continued to pursue training after his pediatrics residency, transitioning to study birth defects, training in rehabilitation medicine, and finally training in bioethics. Dr. Hays was then recruited to become the principal investigator for a demonstration project by the Robert Wood Johnson Foundation titled Promoting Excellence in End-of-Life which finally allowed him to tie all his training experiences together.

Dr. Hays then describes his observations that pain in pediatrics was recognized, but there was a lack of urgency in clinical need to treat pain -- maybe in part due to that lack of sophistication in treatment paths for pain in the early 1980s. He also recalls that psychological and social support of pediatric patients and families were not typically seen as a necessary duty to fulfill by the medical community and largely became the responsibility of the family.

The differences between primary and specialty palliative care are also defined by Dr. Hays as he describes how other hospital services met his palliative team with some suspicion and anxiety of his palliative service overstepping and usurping turf. He also explains that there will always be a need for palliative care due to the progression of medicine and more complex therapies available. When someone elects to complete these more complex therapies, they create the need for palliative care along their health care journey.

Dr. Hays describes the most looming challenge for palliative services to be funding, especially outside of wealthy institutions that can support a palliative service that generally is not reimbursed well. Dr. Hays also describes that the best thing about the palliative field now is the new generation of well-trained leaders that are stepping up to take the lead.

The interview concludes with Dr. Hays’ dream of having palliative services fully integrated and automatically consulted on every case of a leukemia or complex congenital heart disease or when a child goes on ECMO. He would like to see that palliative care professionals become viewed as integral parts of the medical team.

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.

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.

An interview of the Washington University Medical Center Desegregation History Project, conducted by Edwin W. McCleskey and associates, 1990. Approximate Length: 11 minutes.

Michael Karl discusses the ways in which hospitals were segregated in St. Louis when he first came to the city in the 1930s, and how the desegregation of Barnes Hospital came about.

Karl begins by addressing the status of segregated medical facilities in St. Louis in the early 1930s and 1940s and then discusses the desegregation of Barnes Hospital and the elimination of the segregated wards for Black patients, Wards 0300 and 0400. He remarks on the role the hospital boards played in preventing the hospital from desegregating, and the similarities and differences between the Black and white wards.

Karl also discusses the high level of medical care for Black patients at Barnes Hospital and some Black physicians who worked at Barnes.

He says he believes Barnes was integrated in 1962, however the exact date when the hospital was fully integrated is not known.

An interview of the Washington University Medical Center Desegregation History Project, conducted by Edwin W. McCleskey and associates, 1990. Approximate Length: 67 minutes.

As background to the desegregation of hospitals and Washington University School of Medicine, Landau discusses his experiences with segregation in St. Louis as a child, and as medical student, house officer, and resident at Barnes Hospital and the school of medicine. He mentions figures who played a role in desegregation, including David Goldring, Alexis Hartmann, Sr., and Park White, and discusses the obstruction to integration at Barnes from Frank Bradley, the director of the hospital, and the board of trustees. Landau also discusses the desegregation of the school of medicine.

Incorrectly labeled Volume 3.

Incorrectly labeled Volume 3.