Can End of Life Care for the Pediatric Patient Suffering With Escalating and Intractable Symptoms Be Improved?

Abstract

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.

Parents' Perspective on Symptoms, Quality of Life, Characteristics of Death and End-of-Life Decisions for Children Dying from Cancer

“…Today, families play an important role with respect to practical and emotional aspects of patient care and in decision making [16] . Hence, knowledge of the parents ' perspectives on characteristics of their child ' s death is essential to both improve end-of-life care [11] and reduce the long-term distress in surviving parents [13] . It is further essential to understand when parents anticipate their child ' s death and how this relates to decisions for palliative care.…”

Documentation of postoperative pain in the neonatal brachial plexus palsy population

“…Despite an increased focus on paediatric pain management over the past decades, patients' pain still remains undertreated (Collins et al 2000, Anand 2001, Howard 2003, Stomberg et al 2003, Kokki 2004, Matziou et al 2004, Houlahan et al 2006, Oakes et al 2008, Trudeau et al 2009). Most of these studies reflect pain management inadequacies in certain specialties, such as paediatric oncology, but some have focused on postoperative pain management (Stomberg et al 2003, Kokki 2004, Matziou et al 2004, Trudeau et al 2009).…”

“…Pain experiences are subjective and often consist of sensory, emotional, cognitive and behavioural components (Committee on Psychosocial Aspects of Child and Family Health 2001, Matziou et al 2004, AMA 2007, Ballweg 2008, Trudeau et al 2009). The undertreatment of pain symptoms and the lack of pain assessment are major concerns in the paediatric population because of children's limited experiences and their ability to adequately express discomfort (Collins et al 2000, Anand 2001, Howard 2003, Stomberg et al 2003, Kokki 2004, Matziou et al 2004, Houlahan et al 2006, AMA 2007, Oakes et al 2008, Trudeau et al 2009). Thus, pain treatment and assessment in the paediatric population have received growing attention over the past two decades, even by the professional organisations: the APS and The Joint Commission (TJC) (AHCPR 1992, APS 1995, Committee on Psychosocial Aspects of Child and Family Health 2001, Gordon et al 2005, TJC 2007).…”

Palliation of Dyspnea in pediatrics

“…In general, willingness to combine a variety of therapies and to set time-limited trials of therapy with agreed upon outcomes is a good approach. 25 For mild dyspnea, psychological and behavioral interventions are frequently tried first. 26 In addition to purely psychological maneuvers such as self hypnosis and antianxiety techniques, referral to physical therapy for strength conditioning, particular upper body conditioning, can be appropriate in some patients and give excellent results.…”