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Eric Stephanson oral history transcript.

Mr. Eric Stephanson begins the interview by describing his path into ministry and divinity and how that intersected over a lifetime, into a career in pediatric palliative and pediatric hospice care. Mr. Stephanson describes how spiritual guidance grew into the services offered at Canuck Place Children’s Hospice, the first free-standing North American children’s hospice, and how Mr. Stephanson took a chance opportunity to be on the first cohort of multidisciplinary professionals working to deliver palliative services to children in North America.

Mr. Stephanson then goes on to describe how his life experience as a minister helped prepare him to be “comfortable with being uncomfortable” as he approached families in crisis as their child became seriously ill. Mr. Stephanson describes his best teachers of whole human care to be the children themselves, their families, the nurses, and the social workers. He also describes the multidisciplinary model of health care at Canuck Place and how giving every team member, children and families included, a space to speak face to face and ask questions, resulted in people feeling they’ve received the utmost care and people would say “We just love coming to the hospice.”

Mr. Stephanson concludes with his desire to see that pediatric palliative care and pediatric hospice care become fully integrated. He also describes how holistic health care planning could better meet the needs of ill and suffering children by providing more freedom to switch between medical curative care and palliative care in a multidisciplinary model.

Stephanson, Eric

Stacy Remke oral history transcript.

Ms. Stacy Remke begins the interview by describing her initial career path in social work around aging and how she came to develop her interest in care planning for pediatric end of life needs. Ms. Remke then describes her observation that both providers and parents would not have meaningful discussions about the realities and practicalities of children who were seriously ill or dying. She also noticed that providers were resistant to utilizing hospice services for seriously ill pediatric patients and that they expressed sentiments like ‘you’ll take care of my patients over my dead body.’

Ms. Remke then describes the early practices of communication and miscommunication around pediatric end of life. She also describes branding and attracting physician interest in her agency’s pediatric hospice programing as a constant task the agency struggled with initially. Ms. Remke recalls some of the successes and challenges of the early years she was working with her small multidisciplinary team, including defining how social work could work to compliment nurses and other providers.

Ms. Remke concludes the interview by describing her goal to see more children and families with the full spectrum of supportive care that they need. She also describes one of her favorite contributions to pediatric palliative care being her model of multidisciplinary health care planning, now the preferred model in palliative care programs. Finally, Ms. Remke suggests that the field could benefit from equally compensating services and increasing access to professional development resources for disciplines that provide a holistic experience, such as social work, chaplaincy, and child life specialists.

Remke, Stacy

Elliot Krane oral history transcript.

Dr. Elliot Krane begins the interview by describing his early career and observations that pain in pediatrics was not meaningfully managed. After Dr. Krane took a position at the University of Washington, he developed his career path at the intersection of pediatrics and pain/anesthesiology. At his post in Seattle, Dr. Krane worked within a small, close knit pain department that were at the “world’s nexus of [Starbucks] coffee and pain management,” where he helped advance early pediatric pain practices.

Dr. Krane then describes in depth some of the barriers he encountered, such as the myth that children did not meaningfully experience pain, and the role of emerging technology, like the pulse oximeter and the use of portable ultrasound technology, that helped reinforce his practice as an anesthesiologist. Dr. Krane also described some barriers in other departments resisting the practices of pain management—sometimes if the pain services are used at all, they will be called too late to significantly help the patient.

In the future, Dr. Krane would like to see palliative and pain management services more integrated into the “hospital ecosystem,” where the palliative and pain teams are engaged sooner, when they can be most effective.

Krane, Elliot

Joanne Wolfe oral history transcript.

Dr. Joanne Wolfe begins the interview describing some transformative experiences as a trainee in her pediatric oncology fellowship that demonstrated a deficiency in the care provided for children and families managing chronic and complex illnesses.

Dr. Wolfe recalls several fortunate encounters of meeting like-minded people after enduring instances of resistance from colleagues and other providers for her early research work in end of life care for pediatric oncology. These serendipitous encounters led to many pivotal moments in her life, including publishing her fellowship research in New England Journal of Medicine and Journal of the American Medical Association, and eventually leading into a career of pediatric palliative care research and practice.

Dr. Wolfe describes many instances of growing and learning from mistakes in her research, and she reflects on the many fruitful partnerships that she has benefitted from in her career. In the future, Dr. Wolfe would like to see streamlined relationships within interdisciplinary teams to provide the best inpatient, outpatient, and home health care possible.

Wolfe, Joanne

Ross Hays oral history transcript.

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.

Hays, Ross

Sarah Friebert oral history transcript.

Dr. Sarah Friebert begins the interview by describing how she constructed her own academicpath during her time as a hematology/oncology fellow and navigated barriers, including her mentor discouraging her and her work in palliative care during her time as a medical trainee.

Dr. Friebert then goes on to describe her early career experiences in hospice care and the positive results she had after reaching out to others in the palliative field for inspiration as she developed her own palliative care service model. She also expresses one of the early barriers to delivering palliative care services was a profession-wide focus on curative care, which was “potentially at the cost of quality of life and family wholeness.” Additionally, she noted the early disregard of palliative care as “glorified social work.” Other barriers she described were territoriality from other physicians, as well as the misconception that hospice and palliative care are the same entity.

Dr. Friebert concludes the interview by describing her vision for the future of pediatric palliative care, including the provision of choices of services for families, and a seamless continuum of care. She also hopes that pediatric palliative care will become more fully integrated into health care systems and that palliative services will be accessible both in cost and geographic reach.

Friebert, Sarah

Brian S. Carter oral history transcript.

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.

Carter, Brian S.

Betty Ferrell oral history transcript.

Dr. Ferrell begins with her personal introduction to the need for palliative care and hospice from her experience working as a nurse in adult oncology. She describes how she stood alone in her quest to delivery better quality end of life care and decided to pursue her PhD in order to supply the data needed for this emerging field. After years of research and practice Dr. Ferrell joined forces with other hospice and palliative care leaders to expand the field or research and practice to pediatric medicine. She explains how she was drawn to pediatric palliative care and the need for specialization within the field of research. She explains the advancements that have taken part in pediatric palliative care over the past ten years as the specialization has gained greater attention. Dr. Ferrell then goes on to describe some of the changes and challenges presented to pediatric palliative care, citing health policy to be one of the greatest barriers. Finally, Dr. Ferrell describes her greatest successes and her aspiration for all clinicians receive training on palliative care before entering into practice.

Ferrell, Betty

Stefan Friedrichsdorf oral history transcript.

Dr. Stefan Friedrichsdorf begins the interview by describing his time as medical trainee in Germany and his observations that the medical treatments physicians were giving seriously ill children were often the cause of the distressing pain symptoms children experienced. In his pursuit to find out more about managing pain in children, he found there were no existing resources -- no books, no courses, no practices around him. In a chance opportunity, one of his peers was awarded funding to conduct an assessment of pediatric palliative care in Germany, and so Dr. Friedrichsdorf became the manager of that study and began his lifelong mission to eliminate medically caused pain and suffering in children.

Dr. Friedrichsdorf then describes participating in an opportunity sponsored by the Open Society led by George Soros after the fall of East Germany, to participate in several international conferences with other people interested studying pediatric palliative care. This included other like-minded individuals from the United Kingdom, Australia, Albania, the United States, and Canada. Dr. Friedrichsdorf comments on the three different types of healthcare models in the world, how current services and realities were derived from the circumstances created by these healthcare models, and several shocking and egregious situations and practices that he experienced and found to be detrimental to the health of the patient children and their families.

From the friendships he made during the beginning sessions of international pediatric palliative care conferences, Dr. Friedrichsdorf created a successful training collaborative and developed The Educational Palliative and End of life Care (EPEC) pediatrics training modules and certification resource for practitioners. With this training tool, he expects to continue to see the current and next generations of practitioners be well trained in alleviating pain and distressing symptoms in children.

Dr. Friedrichsdorf concludes the interview by listing his plans to continue to build a future where all practitioners are trained in at least primary palliative care, increase the global access to pediatric palliative and pain care free of economic restrictions, implement a reframing of physician training to stop blindly pushing impractical intensive treatments when a palliative treatment would be more effective at reducing suffering and burden on children, and for the establishment of sustainable interdisciplinary palliative care teams in every children’s hospital.

Friedrichsdorf, Stefan

Kanwaljeet S. Anand oral history transcript.

Dr. Kanwaljeet Anand begins the interview by describing his journey into pediatric pain and symptom management through his work examining metabolic and hormonal stress responses of infants undergoing surgery. From this work, he retraced history to understand where the notion of ‘babies don’t feel pain’ came from, and then eventually studied more closely the pain responses of infants.

Dr. Anand describes how he was surprised to find that babies mounted three times the metabolic stress response to surgery as compared to adults, and how his pediatric pain research initially received a lukewarm response from his peers. However, that lukewarm response turned into a massive media scandal as news outlets sensationalized Dr. Anand’s work as ‘disgraceful doctors performing surgery on babies without anesthesia.’ Eventually this media frenzy ended with public apologies printed in the same newspapers.

Since that media incident early in his career, Dr. Anand describes his journey as being “doubly blessed” by immense support from many colleagues and peers as he doubled down into some field-defining research on pain in neonates and infants, as well as clinical work for underserved populations in the “Deep South” of the United States.

Anand, Kanwaljeet S.

Balfour Mount oral history transcript.

Dr. Balfour Mount begins the interview by describing a pivotal moment when he heard Dr. Elisabeth Kübler-Ross lecture at McGill University’s Royal Victoria Hospital. Dr. Mount had not previously heard of Kübler-Ross’s work and was impressed to learn about the unmet needs of the dying. When Dr. Mount conducted a similar study at the RVH, he found the same deficiencies in care and carried out a two year pilot project aimed at addressing these needs through the creation of an in-patient ward, a consultation service, a home care program, an outpatient clinic, and a bereavement follow-up service.

Mount, Balfour

Tomasz Dangel oral history transcript.

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.

Dangel, Tomasz

Kathleen Faulkner oral history transcript.

Dr. Faulkner begins the interview by describing her early career experiences and how those shaped her journey into pediatric palliative care. She attributes a lot the success of her early career to her “nurturing environment” of like-minded clinicians. She then describes some of her experiences being a part of an early practice to make death a more natural and less isolated experience for the patient and family.

Dr. Faulkner then how she helped to evolve end of life care to become more inclusive for families, while also supporting improved communications between providers and family decision makers. Dr. Faulkner became involved with Children’s Hospice International and worked to develop programming for home-based care and natural death without aggressive curative treatments at end of life.

As Dr. Faulkner became more involved with hospice programming, she helped to develop best practices at the intersection of pediatrics and end of life care, and she also helped to integrate family support and family care into the health care plans of pediatric providers. Dr. Faulkner met some barriers such as providers not prescribing meaningful doses of pain and symptom management medicines to pediatrics as well as general lack of training of hospice staff in how to care for dying children.

Dr. Faulkner concludes the interview by describing some of the successes she has seen over her career in the care of sick children and her vision for providers to work together to follow family care plans and provide sophisticated home care services if that is what the family wants.

Faulkner, Kathleen

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

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

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