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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.

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

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.

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

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

Betty Davies oral history transcript.

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

Davies, Betty

Frances Dominica oral history transcript.

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

Dominica, Frances

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

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

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

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

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

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

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

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

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

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

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

Marcia Levetown oral history transcript.

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

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

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

Levetown, Marcia

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