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Donald Schumacher oral history transcript.

Dr. Schumacher begins the interview describing how his career plans changed after hearing “a very unbelievably moving lecture” from Elisabeth Kübler-Ross in 1975. Dr. Schumacher subsequently began his clinical work in both the adult and pediatric end of life care. Dr. Schumacher then recalls that as he became more focused on pediatric hospice care, he was met with a lot of clinician resistance such as “We’re not interested in pediatrics. It’s just too difficult, it’s too painful.”

Dr. Schumacher then describes transformative moments of his career such as his reflection on giving a lecture at a pediatrics conference in New York when the 2001 World Trade Center bombings occurred. He also reflects that clinician resistance to children’s palliative medicine was similar to the clinician resistance toward treating patients for the HIV/AIDs during the 1980s and ‘90s. After these reflective moments, Dr. Schumacher’s takes discusses his role organizational management and lobbying for federal legislation. Throughout his career, Dr. Schumacher successfully advocated for children’s concurrent palliative and hospice care with aggressive curative treatments to be included in the federal Affordable Care Act.

Dr. Schumacher describes initial clinician resistance to children’s palliative and hospice care to be one of his largest barriers in his career. He also describes his frustration with some clinicians who refused to innovate with new best practices. Dr. Schumacher concludes the interview with his dream for the new cohort of children’s palliative advocates to continue working towards integrated pediatric palliative and hospice services that provide streamlined and seamless service to patients and their families.

Schumacher, Donald

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

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

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

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

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