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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.

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.

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.

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.

Dr. Liben credits his initial venture into pediatric palliative care to his experiences of witnessing “unnecessary suffering” during his career in pediatric critical care. Dr. Liben states that he was attracted to how much “promise” that pediatric palliative care held in addressing more than just the medical needs of children and their families.

He then recalls experiences he had with international leaders in the emerging field of pediatric palliative care. Dr. Liben describes how the field has evolved to be more patient- and family-centric while spanning across the intersections of pain management, chronic care, and complex care. Dr. Liben also discusses how he managed his team and developed integration strategies to become an established service in the hospital space. He recounts some of the initial challenges of educating other clinicians on what pediatric palliative care could bring to a health care team. He also reviews how much adult palliative and adult hospice have influenced and nurtured the pediatric care fields.

Dr. Liben then discusses his work in medical mindfulness with an emphasis on human connections and how he has experienced the “ultimate win-win,” with both healthcare teams and patients being happy with the connections and relationships forged. Dr. Liben concludes with his vision for current pediatric palliative care specialists to “teach ourselves out of a job,” and how he strives to cultivate the next generation of physicians in all specialties to have a holistic patient-first approach that incorporates his field’s mindfulness approach to care for more than just the physical, but also the “logical, spiritual, [and] emotional.”

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.

Ms. Marston introduces her career beginnings as a response to the HIV/AIDS crisis in South Africa and describes some of the memorable experiences with youth she cared for. She explains her role in the initial implementation of pediatric palliative day care and home care as well as some of the challenges around growing provider, political, and community education in South Africa. Ms. Marston then talks about her international experiences meeting other in pioneers in the pediatric palliative care field. She touches on her work in developing hospice programs as well as some of the global challenges she’s experienced while establishing palliative care programs. Ms. Marston then goes on to itemize some of the challenges she’s faced in her career and successful methods to counteract those barriers. She concludes with her vison of child palliative care to be integrated into universal health coverage and “accessible to every child’s needs.”

Dr. Martinson recalls her career in children dying at home beginning after a backyard conversation with her neighbor and mentor Dr. John Kersey. Dr. Kersey had mentioned that a child with cancer was going to be admitted to the hospital to die. Dr. Martinson questioned the “common practice” of admitting patients who were actively dying to the hospital. After that conversation, she was drafted by Dr. Kersey to assist in the same child’s healthcare. Dr. Martinson then describes her experience with preforming one of the first documented case studies of supporting a child to die at home with their family. She relates her motivation to help the child die with dignity at home to her own profound experience with helping her father in-law pass at home surrounded by family. Dr. Martinson describes her early experiences with clinicians who offered some resistance and skepticism about allowing children to die at home, but she also states that she was supported by most physicians. Dr. Martinson continues by describing how she continued her work to allow other children to die at home and how she grew the practice of dying at home by making herself available for other nurses and health care professionals internationally. Dr. Martinson then mentions the complexities of maintaining and growing her research in the field of dying at home. She concludes with her vision of the field growing to incorporate community medicine and respite care into priorities for healthcare teams for children suffering with chronic diseases.

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.

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.”

Dr. Papadatou introduces her early beginnings in the field of pediatric palliative care and recalls several of influential figures in her life. These figures were “models of professionalism and humanity,” and included her father, her professor, and a 30-year-old woman with ovarian cancer who “made it a point to teach [physicians], advocate [for patients], and prove wrong all the prognostics.” Dr. Papadatou describes her international work in research, education, and her experience with organizing international events that incorporated some of the fields pioneers, such as Charles Corr, Elisabeth Kübler-Ross, Earl Grollman, Ida Martinson, Betty Davies, and many others. Dr. Papadatou then describes her work with seriously ill children in conjunction with the oncology department of her home hospital, as well as her research and policy contributions. She concludes with her perspective on how the field of pediatric palliative care can advance through a movement of interdisciplinary collaboration, communication, and planning.

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.

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.

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.

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.

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.

Dr. Walco discusses his career beginnings in pediatric pain medicine. He describes field observations of “barbaric” practices that were founded on the notion that children did not experience pain the same way adults do. Dr. Walco recounts some landmark events in the 1980s and 1990s that gained public notoriety and aided in developing the field of pediatric pain medicine, including the Jeffrey Lawson case-study of a premature baby who was administered thoracic surgery while awake and conscious. Dr. Walco then describes early experiences in a field with general disregard for the pain and suffering ofpediatric patients. The need for pediatric health care advocacy drove him to connect with other health care providers to investigate multi-disciplinary, multi-organizational level solutions to improving the quality of life for pediatric patients. Dr. Walco describes the barriers and successes he has experienced in pain medicine as the sub-specialty has evolved in the last thirty-five years. Dr. Walco also describes the vision he seeks to achieve within pediatric pain medicine, as well as the work he is doing to continue to advance the field in establishing the best evidence-based practices.

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.

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