Palliative Care in Pediatric Surgery |
| Palliative
care in pediatric surgery has developed considerably over the past
decade, shifting from a traditional focus on end-of-life support to a
broader integration that enhances the quality of life for young
patients facing complex and often life-limiting conditions. This
evolution acknowledges that palliative care (PPC) in pediatrics should
not be limited to terminal care but serve as an essential component
throughout the continuum of a child's surgical journey, including
symptom management, psychological support, and ethical decision-making. Historically, PPC in pediatric surgery was underemphasized, partly due to the misconception that palliative care equated to giving up hope for a cure. This perception began to shift with the American Academy of Pediatrics' 2000 guidelines, which emphasized adding life to a child's years rather than simply prolonging life. Pediatric surgeons often navigate challenging ethical considerations, balancing their commitment to life-prolonging interventions with the realities of quality of life in conditions that are not always curable. Surgeons are uniquely positioned to assess whether a surgical intervention might alleviate symptoms or enhance a child's comfort. However, this often requires realistic and sensitive conversations with families who may feel conflicted between pursuing aggressive interventions and protecting their child from additional suffering. In pediatric oncology, where palliative care has gained notable integration, PPC aims to manage both the immediate symptoms related to cancer and the lasting effects of treatment. Despite advancements in survival rates, pediatric cancer remains a leading cause of mortality beyond infancy. Many children with cancer endure significant symptom burdens, including chronic pain, fatigue, and emotional distress, which palliative care can effectively address. Studies have shown that even as survival rates improve, a significant number of survivors face debilitating long-term effects, such as organ dysfunction, cognitive impairments, and secondary malignancies. These realities position PPC not only as an end-of-life intervention but as a necessary part of the child's cancer treatment, ensuring comfort and symptom relief regardless of prognosis. One of the critical roles that PPC plays in pediatric oncology is in symptom management. For children with advanced cancer, surgical palliative interventions often alleviate physical symptoms like bowel obstruction, respiratory distress, and severe pain, all of which significantly impact a child's quality of life. The literature highlights cases where surgical palliative interventions have reduced pain or prevented complications, such as respiratory support surgeries or procedures to relieve severe gastrointestinal symptoms. These interventions, often conducted in collaboration with palliative care teams, are part of a multidisciplinary approach where PPC aids in assessing risks, guiding parents through options, and helping set realistic expectations about what surgery might or might not achieve. In pediatric urology, the focus on PPC has emerged more recently. Conditions such as congenital lower urinary tract obstruction, neurogenic bladder dysfunction, and exstrophy-epispadias complex often demand repeated surgeries, intensive hospital stays, and chronic symptom management. Incorporating palliative care in pediatric urology means addressing not only the physical symptoms but also the psychosocial issues children and families face as a result of these lifelong conditions. PPC provides critical support for children undergoing complex urologic procedures, helping manage chronic pain and providing resources for families to navigate the ongoing care that often extends well into adolescence. Moreover, prenatal palliative interventions have become a significant component in maternal-fetal surgery. The availability of early diagnostics has allowed physicians to identify severe congenital conditions such as congenital diaphragmatic hernia (CDH) prenatally, providing families with the option of maternal-fetal surgery. This third option complicates traditional decision-making, which previously offered only termination or post-birth interventions. Maternal-fetal surgery exemplifies PPC's role in improving life outcomes through early, targeted interventions. The palliative care team's involvement in these cases is invaluable, guiding families through the decision-making process by weighing potential benefits and risks while considering quality-of-life outcomes for the child. PPC professionals work alongside fetal surgeons, genetic counselors, and neonatologists, providing a well-rounded approach that respects both the parents' hopes, and the practical realities associated with these surgeries. One of the most pressing issues in pediatric surgical palliative care is timing. Surgeons and PPC physicians frequently differ in opinions on when PPC should be introduced. PPC professionals advocate for early involvement, ideally at diagnosis, to set the foundation for comprehensive, long-term care that includes symptom management and anticipatory guidance. In contrast, many surgeons only initiate PPC consultations when the child's condition deteriorates, making curative treatment unlikely. This discrepancy in timing, often attributed to cultural differences between surgical and palliative care fields, results in missed opportunities for early symptom control and comprehensive family support. Studies reveal that some surgeons delay PPC consultations out of concern that introducing palliative care too early might discourage families or imply that treatment has been exhausted. Communication between PPC teams and pediatric surgeons is crucial for achieving optimal care outcomes. Surveys highlight that PPC professionals believe these discussions should occur much earlier in the disease process to maximize the benefits of palliative interventions. In many cases, families report that they wish they had been introduced to palliative care earlier, as it would have helped them manage their child's symptoms more effectively and provided emotional support during difficult times. For pediatric surgeons, initiating conversations about PPC can be challenging, particularly if they feel it conflicts with families' expectations for life-saving measures. Consequently, PPC training for surgeons has emerged as a key area for improving collaboration and communication. In response, residency programs and continuing medical education increasingly include training modules focused on PPC to enhance understanding and acceptance of palliative practices among surgeons. Research further indicates the need for multidisciplinary approaches that include PPC in pediatric surgical care. Integrating PPC professionals as core team members in surgical planning can foster an environment where families feel supported in their decisions, whether they pursue aggressive interventions or prioritize comfort and quality of life. Collaborative care allows each team member to contribute their specialized expertise. PPC professionals offer insight into symptom management and psychological support, while surgeons provide technical assessments of what surgery might accomplish. Through this collaboration, PPC ensures that surgical interventions align with family goals and the child's best interests, even when curative options are no longer viable. Looking forward, the scope of PPC in pediatric surgery continues to expand. Conditions such as neurodegenerative disorders, complex congenital malformations, and progressive illnesses are increasingly managed with an interdisciplinary approach that includes PPC from early stages. Pediatric surgeons are recognizing the value of palliative interventions, not only for terminally ill patients but also for children with chronic, debilitating conditions. Additionally, as more pediatric surgical specialists receive PPC training, there is a greater opportunity for meaningful collaborations that can enhance the quality of life for children undergoing intensive surgical care. The evidence supports that PPC integration leads to more compassionate, well-rounded care that respects both the child's dignity and the families experience. In conclusion, the integration of palliative care into pediatric surgery represents a transformative shift towards a patient-centered model that prioritizes quality of life alongside medical treatment. By focusing on early symptom management, ethical decision-making, and supportive family care, PPC complements surgical interventions, ensuring that young patients with complex medical needs receive holistic, compassionate care. As PPC becomes more embedded in pediatric surgery practices, it promises to further bridge the gap between life-saving surgery and quality of life, offering families comfort, guidance, and hope in the face of challenging medical journeys. References: 1- Shelton J, Jackson GP: Palliative care and pediatric surgery. Surg Clin North Am. 91(2):419-28, 2011 2- Inserra A, Narciso A, Paolantonio G, Messina R, Crocoli A: Palliative care and pediatric surgical oncology. Semin Pediatr Surg. 25(5):323-332, 2016 3- Spruit JL, Prince-Paul M. Palliative care services in pediatric oncology: Ann Palliat Med. 8(Suppl 1), 2019 4- Ott KC, Vente TM, Lautz TB, Waldman ED: Pediatric palliative care and surgery. Ann Palliat Med. 11(2):918-926, 2022 5- De Bie FR, Tate T, Antiel RM: Maternal-fetal surgery as part of pediatric palliative care. Semin Fetal Neonatal Med. 28(3):101440, 2023 6- Ellis D, Mazzola E, Wolfe J, Kelleher C: Comparing Pediatric Surgeons' and Palliative Care Pediatricians' Palliative Care Practices and Perspectives in Pediatric Surgical Patients. J Pediatr Surg. 59(1):37-44, 2024 7- Li O, Lee R, Boss RD, Wang MH: Palliative Care for Pediatric Urology. J Pain Symptom Manage. 68(1), 2024 |
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