Use guidelines to prepare for children with special needs, or risk tragedy
Use guidelines to prepare for children with special needs, or risk tragedy
Develop plan to care for rising numbers of children with rare conditions
When a child with muscular dystrophy was rushed to the ED at Children’s Medical Center of Dallas in acute respiratory distress, he was immediately given oxygen. That turned out to be the wrong move.
"This was one of the rare occurrences when oxygen can be an enemy rather than a friend," says Robert Wiebe, MD, FAAP, director of the ED. Because the ED staff lacked information about the child’s condition, he developed respiratory failure and died, Wiebe reports.
In another frightening incident, a woman brought her 5-week-old infant, who had gone into shock, to the ED at Our Lady of Lourdes Medical Center in Camden, NJ. She told the staff the child had a hypoplastic right heart with a central shunt.
"We did the routine thing and put the child on 100% oxygen, intubated the child, and hyperventilated. But things just kept getting worse," says Alfred Sacchetti, MD, FACEP, the attending ED physician who treated the child.
When the child’s cardiologist was contacted, he instructed Sacchetti to take the child off oxygen and hypoventilate, which allowed the child to become hypoxic. Suddenly, the pulse rate increased, and the child became pink, recalls Sacchetti.
The infant had chronic pulmonary hypertension, which was the result of the underlying hypoxia she had at baseline and unrelated to the other medical condition. "So when we put the child on oxygen, it made it worse," Sacchetti says. "When we intubated and hyperventilated, it made it worse still."
In that case, the information came in the nick of time, but it could have been obtained too late to save the child’s life, says Sacchetti.
No one can keep up with all the changes’
There is a rapidly growing population of children with rare diseases and medical conditions, due to high-tech devices and medical advances, notes Sacchetti. Ten years ago, these children never survived infancy, he says. "Now they’re growing up and going to college. It’s not that we’re incompetent in the ED, but things evolve so quickly that no one can keep up with all the changes in every specialty."
A new form and guidelines were developed jointly by the Elk Grove Village, IL-based American Academy of Pediatrics (AAP) and the American College of Emergency Physicians in Dallas to arm ED managers with a solid plan to avoid unnecessary tragedies. "The form makes it instantly easier to take care of these kids," says Sacchetti.
The guidelines (see excerpt, p. 87) address children with unique medical needs or chronic physical, developmental, and behavioral conditions. Here are ways to comply:
o Use the Emergency Information Form (EIF). The EIF gives you accurate medical information when it can’t be readily obtained from a parent or physician, says Sacchetti, who helped develop the EIF and guidelines for children with special health care needs. (See stories on the benefits of the EIF, p. 88, and caregiver medical knowledge, p. 89. A copy of the form is inserted in this issue.)
The EIF should be on file for every child with a rare or unique medical condition, stresses Wiebe. "We have set up agreements with some of our specialists to complete the form for every one of our special-needs kids. That should be done around the country." (See box at left to obtain copies of the EIF.)
o Create an internal file for children with special needs. If a child with an unusual disease or presentation comes to your ED, and there is no EIF on file, create a file on the child using the EIF template, Sacchetti recommends. "That way, the ED is prepared for the second time the child shows up," he says. The internal memo won’t be as thorough as an EIF completed by the specialist, but it is the next best thing, he explains.
o Send children home with an emergency care plan. At Hasbro Children’s Hospital in Providence, RI, every child with special needs is sent home with an emergency care plan written by a physician, either the pediatric intensivist or the child’s attending physician, reports Thomas Lawrence, NREMT-P, program director for Rhode Island Emergency Medical Services for Children in Providence.
The importance of these care plans can’t be overemphasized, stresses Lawrence. "Providers treating children with special needs depend on this resource in order to deal with the child’s complex medical problems. Care plans provide the care provider with a concise algorithm to follow during the medical emergency."
The emergency care plans are useful throughout the continuum of care, he says. "With the plan at the child’s bedside, at-home care providers can have it available as a reference for when to contact EMS, as well as what care to provide until help arrives," he says. ED physicians and paramedics use the plan as a resource.
The care plan tells what makes each patient different from all other children with a similar presentation, says Lawrence. "It may be that this child’s seizures are resolved with Dilantin instead of benzodiazepines, or that this child’s O2 saturation on four liters of oxygen is 82%, so no amount of work is going to make it 100%."
o Create an Internet record for children with special needs. At Hasbro Children’s Hospital, an electronic medical record of children’s complex conditions is being implemented so other EDs and emergency medical service providers can access the information via the Internet, says Lawrence. It will contain the following information:
• examples of common presenting problems and their management;
• medications to avoid and why;
• procedures to avoid and why;
• food or medication allergies;
• baseline respiratory and mental status;
• baseline vital signs;
• emergency contact numbers for family members, school, and the child’s primary and specialty care physicians.
Access to that information is protected by passwords to ensure confidentiality, Lawrence explains.
o Maintain a database. Consider maintaining a database of information on special-needs children for all EDs in your community, suggests Wiebe. "Our large tertiary care pediatrics center is a referral base for 30 or 40 hospitals in the area," he explains. "When they get kids with rare problems, they call us for advice so we can fax or e-mail information."
A larger ED could provide after-hours information on what kind of emergencies each child might present with and how to treat them, he says. "If there are only 20 cases of a rare organic acid metabolic disorder in the reported literature, but one happens to live near a rural ED, it’s highly unlikely that they will know that IV carnitine is going to save a comatose child."
• Thomas Lawrence, NREMT-P, Hasbro Children’s Hospital, Rhode Island Emergency Medical Services for Children, Grads 209, 593 Eddy St., Providence, RI 02903. Telephone: (401) 444-8210. Fax: (401) 444-7030. E-mail: [email protected].
• Alfred Sacchetti, MD, FACEP, Our Lady of Lourdes Medical Center, Emergency Department, 1600 Haddon Ave., Camden, NJ 08103. Telephone: (856) 757-3803. Fax: (856) 365-7773. E-mail: a.sacchetti@worldnet. att.net.
• Robert Wiebe, MD, FAAP, Children’s Medical Center of Dallas, 1935 Motor St., Dallas, TX 75235. Telephone: (214) 456-6116. Fax: (214) 456-7736. E-mail: [email protected].
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