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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.

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.

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. 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.

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.

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.

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.

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.

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.

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.

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. 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.

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.

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.

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. 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.

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.

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. 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.

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.