The experiences of pediatric nurses caring for children in a persistent vegetative state

I n the past, a child born with or sustaining a condition leading to profound limitation in neurologic function died during infancy or at most had a very brief life span (1). Because of today’s medical technology, many of these children now survive for years in a persistent vegetative state (PVS). Because of a lack of acceptable diagnostic criteria and coding, the prevalence of children in a PVS is unknown. Earlier publications have reported that there are between 4,000 and 10,000 children in the United States living in a PVS (2). However, more recent data suggest that approximately 3,000 U.S. children under the age of 15 yrs are living in a PVS (3). PVS in children has numerous causes. Most cases fall into one of three main categories: traumatic or nontraumatic brain injury, degenerative and metabolic brain disorders, or severe congenital malformations of the nervous system (2) (Table 1). Although the life span is shortened (1, 4), many children survive into the second and even third decade of life. Comorbidities and technological dependence result in multiple hospitalizations for most of these children. Last, there is often a delay in the transition to adult care. Therefore, pediatric nurses may care for these patients throughout the patient’s lifetime. Caring for a child in a PVS is complex and presents multiple challenges for the healthcare team. The manner in which children in a PVS and their families affect clinicians is unknown, and may be understood through their stories. For purposes of this study, PVS was viewed as “a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brainstem autonomic functions. Individuals in this condition show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli; and show no language comprehension or expression” (2). When first defined by Drs. Jennett and Plum (5), the term persistent vegetative state referred to a condition of past and continuing disability with an uncertain future, whereas permanent implied irreversibility. Nursing care is critical in the management of patients in a PVS. The patient’s survival is related to the quality of medical treatment and nursing care that they receive (2). Several authors have explored nurses’ feelings regarding caring for the neurologically devastated adult. In the absence of a conventional nurse–patient relationship, nurses may find themselves depersonalizing the patient and becoming task-oriented. Critical care nurses caring for unresponsive adult patients secondary to traumatic brain injury or neuromuscular blocking agents struggled with the dilemma of “forgetting there is a person” (6). Some nurses used negative terms (e.g., anxious, detached, discouraged) when describing their experience of caring for this population of patients (7–10). Nurses lacking personal connection with neurologically devastated adult patients report that they de*See also p. 497. From the Progressive Care Unit (BAM) and Center for Research & Evidence-Based Practice (AME), Texas Children’s Hospital, Houston, TX. Supported, in part, by the Center for Research & Evidence-Based Practice, Texas Children’s Hospital, Houston, TX. The authors have not disclosed any potential conflicts of interest. For information regarding this article, E-mail: bamontag@texaschildrenshospital.org Copyright © 2007 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies