From “Longshot” to “Fantasy”: Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail

Abstract

Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to achieve their stated goal, but conceivably could. When patients embark on such a treatment plan, it may fail. Often treatment toward an initial goal continues beyond the point at which such a goal is feasible. We explore the progression of care from longshot to fantasy using two pediatric cases. This progression may be differentiated into four distinct stages of care related to the potential of achieving the initial goals of care. Physicians are often ill prepared for the progression of treatments from a longshot hope to an unfeasible and, therefore, typically unjustified intervention. We present a structured approach to guide clinicians at referral institutions where these situations may be common. The transition of care from "longshot" to "fantasy" is an inherent part of quaternary care for the sickest of patients that has been underexplored. Physicians are often poorly equipped to approach that transition. We advocate this approach to the shift from longshot to fantasy with the belief that such a structured method will have multiple benefits, including: reduced suffering for the patient; decreased emotional burden on patient and family; decreased provider moral distress; increased likelihood of seeking high quality palliative care earlier; and provision of honest and straightforward information to patients and their families.

Communicating With Pediatric Families at End-of-Life Is Not a Fantasy

“…Indeed, parents may experience anxiety, fear, sadness, regret, joy, hope, or other emotions at any perceived sign of their child’s physiological recovery or downward spiral. Weiss and Fiester (2018) rightly note that children admitted to quaternary pediatric institutions, especially to the pediatric intensive care unit (PICU) or neonatal intensive care unit (NICU), tend to be those with complex disease and often include classic textbook pediatric illnesses. This might include hypoplastic left heart syndrome, respiratory syncytial virus, retinoblastoma, necrotizing enterocolitis, childhood leukemia, traumatic injury, or other pediatric anomalies (Ulrich 2017).…”

A Model for Communication About Longshot Treatments in the Context of Early Access to Unapproved, Investigational Drugs

“…Adequate informed consent processes that explicitly rebut unwarranted therapeutic optimism will be crucial for morally responsible practices of expanded access in the future. This response piece engages the target article's suggestion for a communication rubric around long-shot pediatric medicine (Weiss and Fiester 2018). We offer constructive criticism of the authors' proposal of "fantasy" as a framing of the inappropriate expectations parents may have of their child's care.…”

“…Expanded access raises ethical concerns, notably that seriously ill patients may overestimate the benefits of an investigational drug and underestimate its safety issues, fail to make informed decisions, and become susceptible to false hope and exploitation (Darrow et al 2015). The communication model proposed by Weiss and Fiester (2018) and its central distinction between low-odds and no-odds treatment can be used to assist seriously ill patients and their treating physicians not only with decision making with regard to initiating expanded access to investigational therapies but also with monitoring and managing their effects. Thus, it may help to overcome some of the ethical problems associated with expanded access.…”

“…Weiss and Fiester (2018) distinguish longshot care "where there is a low likelihood of success" from fantasy care "where there is no chance of success" (4). A meta-analysis of more than 500 Phase II cancer trials showed a median response rate of 30% for personalized or targeted therapies (Schwaederle et al 2015).…”

Managing Expectations: Delivering the Worst News in the Best Way?

“…In this issue, Weiss and Fiester's (2018) "From 'Longshot' to 'Fantasy': Obligations to Patients and Families When LastDitch Medical Efforts Fail" calls attention to the weight of clinician word choice when discussing interventions in the pediatric population. Their work focuses on communication in a highly narrow slice of intervention options, from unlikely to work therapies to impossible ones.…”