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Preparing Providers for Complex Pediatrics

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You’re responding to a call for a pediatric patient with several complex medical conditions. She has received antibiotics over a number of years for various infections through a port surgically placed in her chest. During one administration the patient had an adverse reaction. What started as itching and a bright red face soon escalated to airway constriction and respiratory distress. She’s had a tracheostomy and now is manually ventilated with a resuscitation bag. 

Having encountered similar situations previously, the patient’s mom—who is a nurse—starts emergency interventions, including an initial administration of IV diphenhydramine, followed by an EpiPen and emergency fluids through the port for hypotension. The patient’s home care nurse also provides care while another family member calls 9-1-1.

When you arrive you’re initially unaware of the patient’s complexity, but the mother informs your team of the steps already taken and standing orders proactively written for circumstances such as this. Based on your department protocols, you insist that fluids via port will need to be stopped and a peripheral line started before you can transport the patient to a nearby hospital—a step that will take time, increase stress and potentially impact the outcome.

You do your assessment and find a peripheral line can’t be placed. You determine the patient won’t need more fluids immediately and you can transport her, but the mother is left feeling unheard, and you’re overwhelmed by the unusual situation that just occurred.

An Overlooked Population

The number of children with medical complexities in our state (Minnesota) has increased significantly over the last 10 years. Patients in need of advanced healthcare technology and comprehensive therapies are living longer. Thanks to advances in treatment, they are able to receive much of this care at home. 

This means parents or caregivers of a child with medical complexities often have comprehensive knowledge of their issue and the interventions needed to support the child when first responders arrive. This is a drastically different scenario than a typical pediatric emergency. They may have already implemented emergency interventions for which they have standing orders from the patient’s physician.

“I know exactly what my daughter needs to be bagged effectively, so when they asked to take over, I told them I wasn’t comfortable with that and that I would continue bagging,” says the mom in the situation above. “I think they were a little surprised by my response.”

It’s understandable that a population as small as children with medical complexities is often overlooked in training and education in favor of more common emergency situations responders are likely to encounter. However, these are also the calls that are often the most dreaded by EMS personnel based on a lack of experience and training with central lines, tracheostomy tubes and durable medical equipment (DME) such as mechanical ventilators and food pumps.

Building Complex Skills

To address these issues, Pediatric Home Service (PHS) teamed up with Hennepin County EMS and the Minneapolis Fire Department to provide responders with information and education on the emergency care required for children with medical complexities. PHS is an independent pediatric home care company that helps children with medical complexities and technology dependencies live safely and successfully at home.

This collaboration provided training for two EMS providers on infusion basics and trach tube essentials during an afternoon session led by PHS educators. They were able to work hands-on with the equipment while relating directly to situations they may encounter in the field.

Hennepin County personnel then took the training and materials back to departments within their area to train others, ensuring responders are better equipped and prepared to provide care for children with tracheostomies, central lines and other complex medical needs.

By scheduling a skill session into the regular training on the most frequent 9-1-1 calls involving pediatrics, Erin Glover, EMT-P, EMT coordinator for fire-based services with the Hennepin County Medical Center’s EMS education arm, provided additional education for EMS providers that focused specifically on children with medical complexities.

This skill station covered communication techniques between caregivers and EMS providers, airway management of a tracheostomized patient and proper suctioning techniques. EMTs also gained basic knowledge on G-tubes, J-tubes, colostomy bags and IV access lines—all demonstrated on a medically complex child manikin, adapted by EMS for visual comprehension.

Expanding the Training

During the last quarter of 2015, most community fire departments in Hennepin County were trained to provide better care for children with these medical complexities. EMS providers are working in their communities with more preparation and depth of knowledge than they had a year ago.

Training for the Minneapolis Fire Department was held during the first months of 2016, extending the benefits of this skill development to an even larger population area. When all training sessions have been completed, more than 700 EMS providers will have a deeper knowledge of what was previously a daunting experience.

“The feedback so far has been overwhelmingly positive,” says Glover. “These calls are the most dreaded and least common, with little to no training. Relief is evident as each EMT practices ventilating the trached patient, learning the importance of PEEP and effectively communicating with the caregivers on the scene.”

“A lot of times we’ll get a call that the patient is short of breath, but that’s it,” says Amber Lage, EMS training officer for the Minneapolis Fire Department. “Then we walk into the home, and it’s a patient who is short of breath but also trached and has a mucus plug! I don’t see this scenario often, so it’s good to know the airway information in advance so I know to bring in suction or start thinking of solutions. Having a knowledge of the child’s situation ahead of time will improve how we can provide care.”

To address this lack of information, PHS and Hennepin County personnel have begun discussing how to create an alert in their system or database that will notify responders of any equipment, central lines or other complexities the patient may have ahead of time. Regardless of a potential alert, it is important that parents communicate these complex medical needs to the dispatcher so he/she can relay this information to first responders. “The more information we can have prearrival, the better,” says Glover.

Once first responders are at the home, a caregiver’s ability to share certain details regarding the child’s health and general condition is crucial for taking efficient and safe action. Many times what may be considered “normal” for a typical child is very different for someone with medical complexities—without certain information, responders are not able to compare the child’s current condition to his or her baseline. Some information helpful and available for first responders includes:

  • Who is the primary caregiver? Sometimes staffing shift changes are made in the midst of emergencies.
  • What is the patient’s clinical baseline? Vital signs, respiratory and cognitive status are often very different compared to a noncomplex child.
  • What is specifically needed from EMS (emergency care, transportation, lifting assistance, backup in a power outage, etc.)?
  • What is the emergency action plan in place specifically for first responders? Often they are handed a huge binder of all of the child’s medical history and chartings when what they really need is a quick reference of demographic information, diagnosis, allergies, meds, vent settings, feeding tubes, etc.
  • Where is the patient’s emergency bag located? This “go” bag include basic equipment for the patient such as spare trach tubes, emergency medications, resuscitation bag, etc.

Additionally PHS encourages families to contact their local fire department and EMS agencies to notify them of a medically complex child at the residence in the event of a natural disaster, power outage or other emergency. As many pieces of equipment rely on electricity and have limited short-term battery capability, it is important for authorities to be aware of homes that need power restored as quickly as possible.

Partnering for Safer Care

Through collaboration between PHS and EMS, responders gain the skill sets and knowledge required for an emergency call involving a child with medical complexities. In addition to partnering with the EMS team, staff at PHS prepare families for emergencies too, emphasizing the importance of maintaining up-to-date medical data and communicating relevant details to the dispatcher.

Strong communication between family and responders is another imperative that is often overlooked in these 9-1-1 calls. Unlike the majority of pediatric emergency calls received from parents who have likely never encountered medical emergencies with their otherwise-healthy children, a caregiver—whether personal or professional—for a child with medical complexities often has an extensive and thorough understanding of the child’s background, baseline, unique considerations and emergency action plan. Caregivers can serve as an incredible resource to EMS for how to best provide care and may have already started interventions.

The ultimate goal in working together is to coordinate care so the child is safe, even in a stressful situation, and can be safely transported to the hospital if needed.

With more firefighters and other emergency responders in Minnesota receiving this training in 2016, much of this special patient population served by PHS will reap the benefits of having highly trained personnel respond to their call.

The Future of Healthcare

As children with complex medical conditions live fuller and longer lives, healthcare is coming to the home, where a patient can receive hospital-level care in a setting more conducive to physical and emotional growth. This shift comes with both challenges and opportunities.

Home care companies need to provide adequate nursing and clinical support in the home while educating others in the community who may provide care for these patients, including EMS.

Emergency personnel need to be prepared to respond to calls involving children who are increasingly complex, requiring them to expand on their training and build a knowledge base of equipment, supplies and interventions frequently seen in this population.

By educating at the professional level, PHS has been able to provide training that allows EMS personnel to enter homes with a collaborative mind-set and ensure the best care is delivered from the moment they speak with a caregiver until the patient arrives at the hospital. First responders and caregivers have always had one common goal: to keep the child safe throughout the entire process. Thanks to this training, a safe and comprehensive care plan can be shared by all team members that come in contact with these special children.

Bruce Estrem, BA, RRT-NPS, LRT, is manager of clinical education for Pediatric Home Service in St. Paul, MN.

Jill Wall, RN, BSN, CRNI, is a home infusion therapy nurse and clinical educator for Pediatric Home Service in St. Paul, MN.

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