What Happens When They Don't Die? A Pediatric IDT Case Series

{"title":"What Happens When They Don't Die? A Pediatric IDT Case Series","authors":"Jaime Jump DO,&nbsp;Faith Kinnear APRN CPNP-AC,&nbsp;Rachel Kentor PhD,&nbsp;Virginia Mendoza BSN RN,&nbsp;Jill Ann Jarrell MD MPH FAAP FAAHPM","doi":"10.1016/j.jpainsymman.2025.02.096","DOIUrl":null,"url":null,"abstract":"<div><h3>Outcomes</h3><div>1. The learners should be able to acknowledge prognostic uncertainty in pediatrics even at end-of-life across the care continuum (outpatient, inpatient and hospice) and employ tools to support patients, families and other members of the care team.</div><div>2. The learner should be able to acknowledge the importance of psychotherapeutic interventions and how to adapt evidence-based interventions based on an evolving clinical picture. It is also important that the learner understands how to support changes across the spectrums of age and neurocognitive and socioemotional development.</div></div><div><h3>Key Message</h3><div>Pediatrics is fraught with prognostic uncertainty not only during the continuum of disease, but also for patients more imminently moving toward end-of life. In a case series approach, we hope to highlight the re-framing of goals of care across the care continuum while introducing a framework for a psychotherapeutic approach to supporting patients, families and other care team members.</div></div><div><h3>Abstract</h3><div>“It's a blessing and it's a curse,” M's mom said. We planned for his death, we checked experiences off the bucket list, but he's still here and we don't know how to live like this, constantly waiting. Pediatrics is a field of prognostic uncertainty and best guesses. As clinicians, we often turn to protocols, projected timelines, and past experiences to guide our best, evidence-based medical management. But as pediatric palliative care (PPC) clinicians, how do we support patients, families, and other team members when a patient's death doesn't follow the timeline we expected? How do we reframe success and failure in terms of advanced care planning techniques and tangible goals, even for ourselves? In this case series, presented by an interdisciplinary team and including parent reflections, we will highlight the role of outpatient and inpatient PPC providers in supporting patients, families, hospices, primary teams, and home nursing in times of uncertain prognosis, uniting competing interests and navigating variable understanding while implementing policies such as concurrent care hospice. We will propose a framework for discussing goals of care and parallel planning when patients don't die, while preserving trust and therapeutic alliance when something as momentous as death was predicted and meticulously prepared for but does not happen. A PPC psychologist will highlight how to support patients across spectrums of neurocognitive and socioemotional development, describing when and how to pivot and adapt evidence-based psychotherapeutic interventions based on an uncertain, evolving clinical picture. Parental challenges with coping and resilience, as related to persistently anticipating their child's death, will also be explored. Ultimately, it is the interdisciplinary approach across the care continuum that can support patients, families, and multi-disciplinary teams to ensure patients and families are living the best they can, for as long as they can, while simultaneously preparing for death.</div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"69 5","pages":"Page e468"},"PeriodicalIF":3.2000,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pain and symptom management","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0885392425001563","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}