Charlie was a vibrant baby, finally home after spending his first eight months of life in the neonatal intensive care unit (NICU). Born a twin, his sibling succumbed to complications of being born prematurely. The NICU team worked tirelessly to save Charlie's life, and he began beating the odds.
He was rolling over, sitting up on his own, playing with toys, laughing and communicating. He remained dependent on a tracheostomy tube to facilitate his ventilator at night, but the future looked bright. Barring any unexpected illnesses or adverse events, Charlie should have been able to someday be a typical trach-free kid. His prognosis was good.
But soon after he was discharged, he developed congestion and required increased support. When his mother became uncomfortable, she did what she was instructed to do; she dialed 911. Paramedics arrived and took over. They suctioned and attempted to ventilate. As Charlie's oxygen saturation and heart rate continued to fall, his mother realized he needed his tracheostomy tube changed.
When she attempted to intervene, paramedics responded that there was no time and he was crashing. Minutes later, they initiated compressions, and he was in full cardiac arrest. After arriving at the closest hospital that was within minutes from the home, the receiving physician found the tracheostomy fully obstructed. He changed the tracheostomy tube, regained a pulse, and transferred Charlie, in critical condition, to a tertiary hospital. Charlie's heart survived, but his brain suffered irreversible damage.
Today, Charlie experiences multiple seizures a day. He does not speak, eat, see or interact. Paramedics failed to address the patency of his airway, but are they to blame? A 2016 survey of St. Louis area paramedics reported that 62% had never had formal training on tracheostomy emergencies. The survey was repeated nationally, and 60% reported never being trained on tracheostomy emergencies.
Charlie is not alone. Multiple similar incidents have been recorded resulting in death or neurological devastation, although little has been done to formally address the issue. Charlie's mother was told to call 911, but no one ensured the emergency providers who would be answering that call were prepared to manage it.
Improving the emergency care system
Children's hospitals across the United States send patients home with medical equipment and challenges that EMS providers and community emergency departments are not always prepared to manage. The family caregivers of these fragile children are instructed to dial 911 for a medical emergency. But pediatric emergency medical training for paramedics and first responders is centered on caring for healthy kids.
Emergency medicine, both in the emergency room and in the pre-hospital setting, tends to focus on recipe-like algorithms. These are easy to memorize and are at any provider's fingertips in the form of smart phone applications or quick reference guides. Treatment algorithms are selected from the age of the child combined with assessment findings that may or may not be normal for children with special health care needs.
Each child with complex medical needs is different—there is no typical special needs child. Since these children are twice as likely as their healthy peers to suffer a medical emergency and require 911, the system needs improvement to meet their needs. While creating emergency medical forms for children is beneficial and useful in some cases, they have limitations.
Identifying a solution for complex patients
The American Academy of Pediatrics released an article in 1999 citing the exceptional risks that exist when a child with special health care requires emergency care. With that article, the Emergency Information Form was released. The Emergency Information Form is a comprehensive document, but continued medical mismanagement in the emergency setting indicates it has not solved the issue. Due to the complexities of children, the forms quickly become outdated.
Written plans are often misplaced and serve little benefit during a high-acuity situation when time is of the essence. Providers feel they must act instead of taking the time to interpret a form that lists syndromes and equipment they are not familiar with.
Emergency treatment interventions that may be listed, including the administration of home emergency medications such as a emergency tracheostomy tube changes, utilizing or replacing gastric tubes, accessing ports or other central lines, will only be performed if the paramedic or registered nurse has been trained, has standing orders to provide the intervention, or is assured that the skills fall within his or her scope of practice.
Additional factors that negatively affect emergency care are the lack of appropriate out-of-hospital advanced directives for children with do-not-resuscitate or do-not-intubate orders, ambulance service protocols limiting transport to the closest emergency department, and distance from advanced life support ambulances in rural communities.
In 2015, a team at SSM Health Cardinal Glennon Children's Hospital in St. Louis, Missouri, took an in-depth look at the factors associated with poor outcomes in the emergency setting, training deficits and the barriers to accessing appropriate emergency medical plans. After delving through the pitfalls that existed during these calls, the hospital developed the STARS Program.
STARS was designed to mitigate the risks for pediatric patients with complex medical needs when faced with an out-of-hospital emergency. The program aims to bridge gaps of communication that exist between clinics, emergency departments and ambulance services with the mission to make the most fragile patients safer.
Special needs Tracking and Awareness Response System (STARS) identifies children who are at high risk prior to discharge and includes the family's local emergency medical system in the transition home. Providing emergency information and training to emergency medical providers prior to an emergency taking place is crucial.
The program is a multifaceted system that not only creates emergency medical plans for children but provides education and introduces paramedics to the high-risk children in their communities. The STARS system operates with the belief that the emergency services system should be considered an extension of the child's care team.
Each child is assigned a STARS number, which matches his or her electronically housed emergency plan. The plan is accessible to local EMS, community hospitals, flight teams and transport teams via the STARS database. Local 911 dispatch centers are notified of STARS patients in their response area so when a guardian places a call for a patient that is enrolled, they can identify the child as a “STARS patient” with their number. The 911 dispatcher relays the number to the responding ambulance so the first responders can reference the case on the way to the call and then with the receiving hospital.
Medical helicopters are included in the emergency plan for children who live in rural communities with limited access to advanced life ambulances or who are a substantial distance from a capable hospital. Direct flights with specialty trained nurses and paramedics from farm field to tertiary hospital have been executed with success.
Each ambulance service is encouraged to maintain a STARS coordinator who arranges meetings with the children in their response areas, attends quarterly STARS meetings and serves as a point of contact for the pediatric hospital. The idea to host face-to-face meetings with first responders and the patients in their communities was designed to ease any fear and tension on behalf of the patients and their families.
The team discovered the paramedics benefited the most from the meetings as they were the ones who harbored hesitation toward the children. These meetings give paramedics a greater sense of baseline or what is “normal” for these patients so they can better assess for the abnormal in an emergency.
The children are referred through the NICU, Complex Medical Care Program, Neurology, Cardiology, Social Services, Emergency Department staff and hospital discharge planners. The STARS team, which is comprised of two experienced paramedics and a pediatric board-certified emergency physician, draft the STARS plans with oversight and ongoing input from the specialty clinics. The STARS paramedics understand the scope of ambulance providers and the jurisdictional rules of various EMS regions.
After the STARS plan is approved by all within the child's care team, it is sent to EMS physician medical directors. Each EMS system operates under the licensure of a physician medical director who dictates what paramedics can and cannot do under “standing orders” and protocols. Allowing the EMS physician medical directors to have the final approval of plans helps paramedics follow any emergency treatments, transport decisions or advanced directives that are listed without the need to pause and make phone calls to medical control for approval.
Ongoing education is also a key component of the program. The STARS team conducts educational symposiums with community emergency departments and EMS agencies, creates webinar trainings, hosts quarterly meetings with representation from local hospitals, state leaders, EMS providers and school nurses. STARS staff provides education for local paramedic programs and has presented at state and national conferences.
Children at the most risk
STARS is collecting data on various significant events, including unexpected out-of-hospital deaths, 911 activations within 10 days of discharge, and adverse events. While further analysis is required, preliminary findings show patients who are especially at risk are those with unfilled home nursing hours or inexperienced home health providers, those living in rural areas or low-income housing, and children who are being mainstreamed in school without a specialty trained one-on-one nurse.
Children who benefit from STARS enrollment are those with tracheostomy or home ventilator dependence, severe neurological disorders, rare genetic disorders, cardiac complications, those with home emergency medications such as clotting factor or emergency steroids, and those with do-not-resuscitate or specific end-of-life wishes.
Using community programs
The future of EMS may hold opportunities to support this population in a more substantial way. STARS is tracking metrics such as 911 activations where paramedics who had been through training and were familiar with the children enrolled in their program were able to support caregivers in troubleshooting medical equipment, providing further assessment and sometimes treatments and allowing the children to stay home, avoiding a transport to the hospital.
Community paramedic programs aimed at reducing readmissions by identifying gaps in resources and checking in with patients to ensure compliance with home medications and regimens are becoming more common. Traditionally, these programs enroll adult patients, with a focus on the elderly. With careful screening and open communication with specialty clinics, the STARS team is exploring utilizing community paramedic programs for select pediatric patients.
Keep fragile patients safe
There is no easy way to ensure children will transition out of the hospital safely and with the support they need. The only way to ensure children with complex medical needs and technology dependence have access to safe emergency care is to identify those who are at risk, provide education to the providers who manage children during an emergency, and share pertinent information with all who will be a part of the care team should an emergency arise. The regular updates required for emergency medical plans and the need for quick access necessitates an electronic system. It takes a dedicated team to maintain a system like STARS, but it is necessary to keep the most fragile patients safe.