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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.

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.

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. 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.