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Emergency Room Protocol Letters


When children and adults with mitochondrial disease become ill, their Mito specialist often will instruct them to seek care, usually at the Emergency Room, during certain situations or types of illness. Since few if any mitochondrial specialists typically are available in the ER during times that treatment is needed, it is imperative that the Mito specialist's instructions be communicated via a protocol letter or a letter of medical necessity. This letter is one that the patient or family would give to emergency personnel prior to treatment. It should include the date, patient’s full name, and specialist's name and phone number for after hours, in addition to a detailed description of the patient's diagnosis and treatment protocol during illness or other emergencies.

If an emergency situation arises, it is always helpful to go to an Emergency Room where the PCP or specialists are on staff or have privileges.  Having the PCP or specialist call ahead to the ER to alert the staff regarding the patient's mitochondrial disorder also is a good idea; hopefully, this will prompt the ER staff to listen to the family or caregivers about the patient's rare medical condition and follow the treatment protocol.  The ER staff members also are more likely to accept information or recommendations from one of their own practitioners than from a physician at another medical center.

MitoAction has provided a sample protocol letter here; however, please keep in mind that any protocol letter will be disregarded unless it is personalized to the specific patient and signed by the Mito specialist.  Also, protocol letters should be updated annually so that ER personnel can trust that the information and treatment plan are current.  

Another related rare disease support group, the Fatty Oxidation Disorders Family Support Group, has shared a wonderful overview of the importance of ER protocol letters by attorney Charles Hehmeyer, who regularly represents victims of medical negligence.  Failure to follow an ER protocol letter resulting in serious injury or death may be grounds for a medical malpractice lawsuit.  Of course, no one wants to see the situation get to that point, so it is crucial to communicate effectively with the ER team about use of the protocol letter.  If the ER team refuses to call members of the patient's usual medical team, you may want to consider calling the Mito specialist yourself.  Make sure to keep calm, however, and communicate as best you can the importance of the instructions contained within the ER protocol letter.

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