Casey 1
STARS
Since its birth in the early 1970’s, the Emergency Medical System has come a long way. In its infancy, emergency providers didn’t do a whole lot more than drive expediently to the hospital, however, adaptations and advances were made along the way and slowly progression was made. Early EMS focused strongly on adult traumatic injuries; largely due to the fact that most pre-hospital medical studies were conducted in the mid-sixties to early seventies and were based on injuries sustained on the battlefields of Vietnam. Trauma was the basis around which EMS was formed. Advanced Cardiac Life Support was conceived in the hospital, then made its way into the prehospital scene in the mid-eighties and not until 1988 did the American Heart Association introduce Pediatric Advanced Lift Support or ‘PALS’ (“Evolution”). Unlike the early years, today’s EMS system is highly advanced and the horizons of scope have broadened beyond trauma. Ask any paramedic to describe how a typical inferior myocardial infarction will present on a 12 lead EKG and he or she could tell you. The average paramedic of today can recite the electrical pathways of the heart in their sleep. Obviously, paramedic curriculum has become substantially more sophisticated over the past forty years, but has it advanced enough to encompass the needs of our booming population of medically challenging, technology dependent children? Ask those same paramedics if he or she would rather be on the scene of a vehicle rollover accident with multiple occupants or a nine month old with a tracheostomy, at home on a vent with a fever needing to be suctioned and I guarantee you, most will choose the multi victim vehicle accident. Why you might ask? Because we are comfortable with what we are accustomed to. Very few paramedics have textbook knowledge on how to manage an infant with a tracheostomy much less any hands on experience. Many emergency providers will readily admit to having very limited to no training in taking care of fragile or technology dependent pediatrics. The most current paramedic textbooks offer a chapter or so on special considerations at most, yet the answering services of pediatric specialty centers instruct callers to “hang up and dial 911” if the situation is an emergency. Being faced with a technology dependent child on a 911 emergency can be extremely anxiety provoking, especially when one isn’t prepared.
Advances in pediatric medicine have resulted in more and more children surviving with syndromes that were once labeled terminal and the survival of preterm infants under twenty seven weeks gestation has dramatically increased due to technology. Due to these medical advances, the population of children with special health care needs has increased quite dramatically. According to Dr. Alfred Sacchetti, co-author of the text, The Potential for Errors in Children with Special Health Care Needs, “Children with special health care needs represent the most rapidly growing subset of pediatric patients [in the United States].” Approximately thirteen percent of children in the United States have some type of chronic physical, developmental, behavioral or emotional condition which requires them to rely on health services beyond that of a typical child. It is noted in a publication by the American Academy of Pediatrics that up to fifty percent of those children are stricken with a disability that impairs their functions of daily living and are technology dependent (Glader and Palfrey). Common medical technologies that children are sent home with are ventilators for respiratory support, tracheostomies, supplemental oxygen, gastronomy and jejunostomy tubes for nutritional support, temporary venous access catheters and renal dialysis (Glader and Palfrey).
Pediatric Advanced Life Support specifically teaches us how to manage a pediatric patient who is in cardiac arrest, is hemodynamically unstable or has respiratory compromise by following a recipe like algorithm. But what happens when the care a child requires deviates from that algorithm? For example; a child with a congenital heart defect may have low baseline oxygen saturation of 75-80% and could be harmed from being placed on high flow oxygen, a child on the Ketogenic Diet for seizure control who presents with hypoglycemia could suffer harm from a sudden dramatic increase in blood sugar caused by standard protocol. PALS teaches emergency providers to concentrate on compressions now before ventilations, but in the case of the child with a tracheostomy, the airway needs to be addressed before anything else as it is typically the cause of the arrest. In children with tracheostomies, the most common cause of airway related death is due to cannula obstruction. Yearly, approximately one thousand catastrophic tracheostomy related events occur in the United States and up to eighty-eight percent of those events are due to correctable issues, but health care providers are not being properly trained ( Tracheostomy). According to the American Academy of Pediatrics, “Emergency care of children with special health care needs is frequently complicated by a lack of a concise summary of their medical condition, precautions needed, and special management plans.” Errors, sometimes fatal are often made due to a lack of timely, accurate information on these children. Having detailed information on these children helps, but being handed the information at the scene of a sometimes chaotic emergency scene is not practical.
The problem at hand is clear; EMS and community hospitals need specific training on these kids and they need a game plan for when and if they have that emergency. Fire departments routinely pre-plan a dangerous or large building in case of a fire so why can’t we pre-plan a child? The answer is a simple one; we can do better and we can prep for these kids. The answer is STARS.
STARS is an acronym for Special Needs Tracking and Awareness Response System. It is a program currently being offered by SSM Health Cardinal Glennon Children’s Hospital that not only provides a detailed care plan for children with special health care needs but is designed to be a community program that focuses on bringing a whole new level of comfort in caring for challenging pediatrics by regular exposure and focused training. STARS gives first responders access to a care plan that details the child’s medical history, baseline vital signs, common emergencies, treatments that may be harmful, and baseline neurological status. One of the key components of STARS is that responders have access to this information prior to an emergency taking place and have knowledge of the high risk children in their response areas. Once the children are identified, a representative from the department visits the child and his or her family either at their home or the children often times come up to the firehouse, EMS department building or community hospital. The STAR form is completed with the involvement of both parties. The initial visit is a time for the emergency care providers to visualize and document how the child is at his or her baseline. The families can also be educated on how the 911 system works and if the child has anxieties about the ambulance or community emergency department, he or she can hopefully become less fearful by touring it and touching equipment. The child is then assigned a ‘STAR #’ that coincides with their emergency STAR form. The STAR form is kept accessible on all ambulances and also at the community hospital. In the event of an emergency, the family is instructed to relay their personal STAR # to the 911 dispatcher so that the dispatcher can alert the responding crew they are responding to that particular “STAR child”. Agencies are encouraged to follow up on the children throughout the year and to even involve them in public relations events in order to develop an even greater sense of comfort. The EMS outreach team at Cardinal Glennon offers free, ongoing specialized training to the departments to help keep them up to date on the latest standards in special needs pediatric emergency care. Both first responders and parents feel an increased sense of security once the STARS program is put in place in their community. The following is a quote from a paramedic who works for an EMS department that is active in STARS. He was dispatched to an adolescent patient who is enrolled in the STARS program who is on a ventilator, "My first call utilizing STARS was complicated and challenging, even by EMS standards. However the system permitted me to have advanced medical knowledge before I walked through the door. There was no time lost backtracking to learn the patient's history or baseline in the midst of a chaotic scene. I knew my patient's name and her mother's name, and that I should include my patient in any discussions about her care. I already knew why there were ventilators, pumps, and feeding tube setups in the room. I was able to hone in on the emergency and provide precise care that the patient needed in an efficient manner. The call outcome was greatly improved from my perspective, and more importantly, to the family's satisfaction." – Paramedic, Nick Salzman.
After a tracheostomy emergency, the mother of a young child who is enrolled in the STARS program wrote about her frightening experience and how she knew the responders who came to the rescue because she had trained with them. The following statement is an excerpt from that writing:
Suddenly first responders were there beside me on the floor in my hallway bent over my baby. Firemen. "You will be the first ones to Nathaniel's house," Tricia had told them at training last month. "He lives right around the corner from you."We moved Nathaniel so more people could get around him to help. I asked for oxygen and trach ties and suctioning and for someone to hold down his arm that continued to want to grab for my hand holding the trach in his vomit slimy throat. Someone asked for more light. I have no idea if it was family or first responders answering the requests, but hands moved together like they were coming from one body. Like we had trained for this moment. Nikki appeared at my left. Steve was over her shoulder. Paramedics and firemen who were not just answering a call but whose names I knew. Whose faces I knew. Paramedics and firemen who over the last months have invested time and energy into learning about Nathaniel, watching our routine trach changes, and asking questions about how to help us in an emergency. First responders who just that morning laughed with me that someday he would be able to pull out his trach. First responders who have Nathaniel's address not only written on a paper in the truck, but on their hearts and knew before dispatch said STAR 10 that the call was our house.
In the case of the child with the tracheostomy emergency, emergency responders from both the fire department and ambulance district not only received aggressive training on tracheostomy emergencies from SSM Cardinal Glennon staff, but paramedics also visited the child’s home to witness routine trach changes to increase comfort. Those visits not only provided education but gave the responders prior knowledge to the location of the child’s home.
The STARS system has worked successfully in cases of respiratory compromise, seizures and general illness. In a case of a child who suffers from severe developmental delay and was not responding appropriately, the EMS crew was able to establish the child was significantly ill because they had read a detailed report on his baseline status and could see that he had declined from that. Without STARS being in place for a child, if a parent who could not calmly and accurately describe a child’s baseline, medics would have no way of assessing just how far from baseline the child was or if he had deviated from his normal at all.
Ultimately, paramedic curriculum and emergence care standards in general will catch up to the ever changing needs of our new population of complex pediatrics but until then, programs like STARS can hopefully improve the outcomes of these children in emergencies.
References
“Evolution of Pediatric Life Support”, Cheng, Rodgers, et al. www.NCBI.nlm.nih.gov web. 15, Nov. 2015
Dr. Laurie J. Glader, MD and Dr. Judith Palfrey, MD, “Care of the Child Assisted by Technology”, Pediatrics in Review, November 2009, Volume 30/ Issue 11
Sacchetti, Alfred MD, Carraccio and Gerardi, The Potential for Errors in Children with Special Health Care Needs.
Das, et. Al. “Tracheostomy Related Catastrophic Events” www.ncbi.nlm.nih.gov, January, 2012, The American Laryngological, Rhinological, and Otological Society, Inc.