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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.

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