BACKGROUND: Previous work suggests that parents of children with cancer can remain hopeful despite receiving prognostic information, but we know little about what hope means to such parents, or the extent to which parents can feel hopeful even while facing the child's impending death. METHODS:We audiotaped conversations between clinicians and parents of 32 children with relapsed or refractory cancer, and then interviewed parents about their hopes and expectations for their child.RESULTS: Parent statements about prognosis in interviews mirrored those made by clinicians during discussions about the child's diagnosis with refractory or relapsed cancer. Clinicians used language referring to hope during these conversations but did not ask parents directly about their hopes. Parents expressed a range of hopes for their children, from hopes related to cure or treatment response, to quality of life, normalcy, and love and relationships for the child. For most parents, expectations about prognosis were not aligned with their hopes for the child; for example, many parents hoped for a cure and also reported that they did not believe cure was possible. Many parents were able to acknowledge this incongruence.CONCLUSIONS: Parents accurately conveyed the reality of their child's serious condition in the setting of advanced cancer, and yet maintained hope. Hopes were not limited to hope for cure/ treatment response. Clinicians should be encouraged to engage in direct conversations about hope with parents as a means to elicit realistic hopes that can help to focus the most meaningful plans for the child and family. WHAT'S KNOWN ON THIS SUBJECT:Although physicians worry that communicating about prognosis or life-threatening illness can take away hope, previous work suggests that prognosis communication may even enhance hope. The nature of hopes held by parents of children with advanced cancer was not previously understood.WHAT THIS STUDY ADDS: Parents in our study frequently recognized their child' s poor prognosis, yet held many different hopes, including for cure, quality of life, and meaningful relationships. Parents who hoped for cure often recognized that this was not possible for their child.
Many parents consider prognosis communication to be both difficult and necessary. While upsetting, prognostic information engenders hope by helping parents feel prepared to do their best for their children in the difficult days to come.
Over 70% of pediatric organ donors are declared deceased by brain death (BD) criteria. Patients with these devastating neurologic injuries often have accompanying multiple organ dysfunction. This study was performed to characterize organ dysfunction in children who met BD criteria and were able to donate their organs compared with those deemed medically ineligible. DESIGN: Retrospective cohort study.SETTING: PICU at a quaternary care children's hospital. PATIENTS:Patients with International Classification of Diseases, 9th Edition codes corresponding to BD between 2012 and 2018 were included. MEASUREMENTS AND MAIN RESULTS:Demographics, comorbidities, Pediatric Risk of Mortality (PRISM)-III, and injury mechanisms were derived from the medical record. Organ dysfunction was quantified by evaluating peak daily organ-specific variables. Fifty-eight patients, from newborn to 22 years old, were included with a median PRISM-III of 34 (interquartile range [IQR], 26-36), and all met criteria for multiple organ dysfunction syndrome (MODS). Thirty-four of 58 BD children (59%) donated at least one organ. Of the donors (not mutually exclusive proportions), 10 of 34 donated lungs, with a peak oxygenation index of 11 (IQR,(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23); 24 of 34 donated their heart (with peak Vasoactive Inotrope Score 23 [IQR,[18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33]); 31 of 34 donated kidneys, of whom 16 of 31 (52%) had evidence of acute kidney injury; and 28 of 34 patients donated their liver, with peak alanine transferase (ALT) of 104 U/L
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