ABSTRACT
An adolescent's last moment of life is an emotionally and medically complex time. Children may grapple with understanding the things happening to them and with grief of a future lost; caregivers struggle to simultaneously balance deep sorrow, hope, and love; and healthcare providers fight to maintain sound medical and ethical decision making. Increased discussion regarding adolescent end-of-life care is needed so that clinicians may better understand how to engage in ethically based medical management during these events. This holds particularly true in situations where potentially conflicting ideas exist between clinicians and family members. We describe the case of an acutely and terminally ill adolescent who remained cognitively intact but with rapidly advancing multiple organ failure and whose parents requested that he remain uninformed of his critical illness and prognosis.
ABSTRACT
Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and timing of palliative care consults for pediatric patients who undergo surgical procedures during terminal admissions. Design: Retrospective cohort study using data from the electronic health record. Setting and Participants: Pediatric patients who underwent at least one surgical procedure during a terminal admission at an urban, quaternary hospital in the United States from January 1, 2016 to December 31, 2021. Main Outcomes and Measures: Patients' medical, surgical, and admission-level characteristics were abstracted. Associations were evaluated between these characteristics and the occurrence and timing of a palliative care consult relative to surgery and death. Results: Of 134 patients, 84% received a palliative care consult during their terminal admission. Approximately 36% of consults occurred before surgery, and 12% were within one day of death. Children without a palliative care consult were more likely than children with a consult to die during surgery (19.1% vs. 2.7%, p = 0.02), have surgery within 24 hours of death (52.4% vs. 15.9%, p < 0.001), and undergo a full resuscitation attempt (47.6% vs. 12.4%, p = 0.002). Receipt of a palliative care consultation did not differ by patient sex, reported race and ethnicity, language, insurance, or income level. Conclusions and Relevance: Palliative care consults support high-quality end-of-life care for children and impact perioperative outcomes, including intensity of surgical care and resuscitation in the final hours of life.
