Stopping the Momentum of Clinical Cascades in the PICU: Intentional Responses to the Limits of Medicine

The majority of pediatric deaths occur in intensive care units, and among children who survive their pediatric intensive care unit (PICU) stay, many are left with significant morbidities, profound disability, and/or technology dependence. Additionally, more than 50% of children admitted to the PICU have baseline chronic medical conditions, and these patients are at increased risk of mortality, prolonged ICU length of stay, and aggressive interventions that clinicians may assumed to be desired by families because they utilized them in the past. Oftentimes, these outcomes are the consequence of a cascade of interventions that, over time, have diminishing potential to improve patient survival. Ensuring evidence-based and goalfocused decision-making in the context of critical illness and end-of-life care is one of the most challenging responsibilities of PICU providers. The ability to prognosticate recovery or death is imperfect, and this uncertainty has a significant impact on provider decision-making as well as communication related to the limitation of life-sustaining treatment. In the face of this uncertainty, we seek to offer ‘‘hope’’ to families that their child will improve with our treatments. Often our greatest challenge comes when we recognize, or fail to recognize, that the limitations of medicine have been reached. Most children who die in the PICU have an underlying chronic illness with high utilization of medical services. These chronically critically ill patients represent an ideal group with whom to engage conversations that address long-term goals of care. Providers acknowledge that conversations about goals of care at the end of life should occur during a time of stability and opportunity for reflection. However, the reality is that these conversations typically occur late in a child’s illness, oftentimes only when death is imminent. There are numerous explanations for this delay in communication. Most commonly, providers seek to avoid diminishing hope for recovery or cure and may wait for a time when it is clear that the patient has acutely life-threatening disease to embark on discussions of goals. These barriers to effective communication often obscure the reality that cure, or acceptable recovery, is unlikely. As part of a larger institutionally approved institutional review board study of adolescent and young adult advance care planning, we conducted clinician focus groups to obtain their perspectives on advance care planning and informed decision-making in critical illness. The main focus group questions were ‘‘What role do you see for advanced directives in pediatric critical care? ’’ and ‘‘Discuss your thoughts about whether adolescent and young adult patients and families can make truly informed decisions about life-sustaining treatment? ’’ We identified themes impacting the ability of providers to transform advance care planning into clinical meaningful decisions. These included the temporality of ACP and actual end-of-life decision, the importance of embodied knowing in informing patient decisions, and, as we will discuss in detail in this article, the role of ‘‘ICU clinical cascades’’ in impairing provider, patient, and family end-of-life decision-making. In 1986, Mold and Stein described ‘‘cascades’’ in medicine as a result of the ‘‘anxiety’’ of the health-care system (and its providers). Averse to the consequences of undiagnosed, and thus untreated, problems, clinicians often mitigate their anxiety by ordering more tests. These tests may lead to additional therapies or use of technology to resolve the acute issue. In this seminal commentary, they stated that ‘‘the cascade effect . consists of an initiating factor or factors, followed by a series of events that seem to be a direct result of previous events . This chain of events tends to proceed with increasing momentum, so that the further it progresses, the more difficult it is to stop. The participants in the process are often unaware that it is a cascade effect, and they frequently fail to recognize its cause . The danger of a cascade is that it can be inappropriately triggered and, once triggered, it is almost impossible to stop. ’’ The clinician factors responsible for this cascade are cultural, personal, and different for each individual patient. Clinicians may consider the additional therapy or technology as minimal compared to the numerous prior interventions. Perhaps the degree of prognostic uncertainty inherent in PICU practice motivates clinicians to continue all possible therapies.