Can end of life care for the pediatric patient suffering with escalating and intractable symptoms be improved?

Over twelve thousand children are diagnosed each year with cancer, and approximately 2200 children die each year from the disease. A percentage of these patients experiences escalating and intractable distress with symptoms that include pain, dyspnea, and agitation. These symptoms may continue for hours to days. Intractable symptoms of pain, agitation, and dyspnea can be very distressing to the patient, family, and staff and often a challenge for the physicians and nursing staff to treat. To meet this challenge, The Dana-Farber Cancer Institute/Children's Hospital Cancer Care Program has made it a priority to create a process of care that includes identifying barriers to care and the development of an end-of-life (EOL) rapid response model that includes guidelines and physician-templated orders for rapid escalation of opioids. The goal of this quality-improvement initiative was to develop a model of care that would enable the caregivers to provide effective comfort care to any patient experiencing symptoms of rapid escalation of pain, dyspnea, and agitation. A model of care was created to overcome barriers to care. The model includes role clarification, "Guidelines for the Management of Escalating Pain/Dyspnea/Agitation at the End of Life," and "Rapid Titration-Templated Physician Orders." Staff feedback was solicited relative to the content, format, and usability of the guidelines and templated orders. The physician and nursing staff reported that they found the templated orders and guidelines very helpful and effective and suggested only a few edits. A retrospective chart review is currently under way. The purpose of this chart review is to systematically document and compare the record of management of rapidly escalating symptoms of pain and/or dyspnea and/or agitation prior to and after instituting the EOL Rapid Response Model of Care. Care of the EOL patient experiencing symptoms of pain, dyspnea, and agitation is challenging. The EOL Rapid Response Model of Care outlines a process of care and provides recommendations and templated physician orders for rapid titration of opioids.