When Our Patients End Up Elsewhere

Column Author: Kelstan Ellis, DO, MSCR, MA, FAAP | Pediatrics - Palliative Care Team | Clinical Assistant Professor of Pediatrics, University of Missouri-Kansas City School of Medicine 

Column Editor: Brian Carter, MD | Neonatal/Perinatal Medicine, Bioethics; Neonatologist; Pediatric Bioethicist; Interim Director, Pediatric Bioethics | Professor of Pediatrics, University of Missouri-Kansas City School of Medicine

As any pediatric clinician will attest, it has been a rough viral respiratory season. The atypical and early peaks of influenza and respiratory syncytial virus combined with the ongoing COVID-19 pandemic created a “triple-demic” that resulted in an elevated census of very high acuity patients across the nation in pediatric wards and ICUs. As an institution, Children’s Mercy Kansas City has been stretched beyond capacity for weeks on end, impacting all facets of our organization from bedside staff to patients and families. We strive to provide exceptional care to the patients within the walls of our institution, but what is our obligation to patients who are transferred to another hospital or denied a bed within the Children’s Mercy system due to lack of resources and space?  

Many patients who receive most of their pediatric care within our system presented to our emergency department during this “triple-demic” only to be transferred to another hospital with an open pediatric bed after receiving initial stabilization. Sometimes there simply was no room here. Sometimes the care they needed was determined to be available at other institutions in the metropolitan area or region. For some families who view Children’s Mercy as their medical home, transfer was disorienting and disappointing. One mother of a child with medical complexity described feeling “abandoned” by the medical team that has provided multidisciplinary care to her daughter since birth. Some families had to travel hours away from their home to be with their child who needed hospitalization. Additionally, numerous requests by referring hospitals and clinics for transfer to Children’s Mercy for a higher level of care that typically would have been accepted were denied due to the extraordinary circumstances.  

Undoubtedly other institutions in the Kansas City area can care for critically ill children, but many of these children require interventions and subspecialty care that is regionally available only at Children’s Mercy. These situations have raised difficult ethical questions about triage and resource utilization that our transfer center, accepting physicians, charge nurses and many more are facing on a near-daily basis. Which patients need to be here? How far can resources be spread before care is compromised? Do we have a special obligation to “our” established patients? Legal, ethical and medical standards appropriately dictate that triage decisions be based on medical circumstances rather than a patient’s history with an institution. Crisis circumstances necessitate a shift in the typical standards of practice, with concerted efforts to minimize harm and optimize benefit. When these shifts are required, additional consideration should be given to how support can be offered to those outside of our institution.   

Many smaller, rural, or community facilities feel uncomfortable providing critical care to pediatric patients and seek the support and expertise of the Children’s Mercy community. When no bed is available to transfer their patient to, we should offer partnership through ongoing contact, sharing of knowledge, and offering additional recommendations for the continued care of these patients. In many circumstances, with additional observation and supportive care, some patients can safely remain at their current institution. Even when the need for escalation of care to a tertiary center becomes more pressing and evident as a clinical course progresses, having an established line of communication and familiarity with the patient can improve this process.  

Similarly, clinicians can continue to care for established Children’s Mercy patients who remain hospitalized elsewhere. This continuity may be through direct communication with the patient and family and in collaboration with the current treating team. Examples might include participating in an interdisciplinary, interinstitutional conference virtually or simply touching base with a parent via telephone. When our institution is unable to provide direct care to patients who identify our teams as their primary, trusted providers, we must find alternative methods to offer ongoing support. These actions blur the traditional institutional lines, and they are not considered billable or accounted for in typical scheduling and workflow. Yet frequently participating in interinstitutional care is what is best for the patient. With transparency and explicit permission from the involved parties (i.e., parents/guardians giving consent for medical records to be shared between institutions) as well as ongoing communication between a patient’s established medical team and the current treating team, quality, holistic care can be optimized, which is central to the Children’s Mercy mission.