Hemophilia patients routinely have difficulty dealing with hospital emergency rooms. The biggest issues are a lack of knowledge of hemophilia by ED staff and the lack of availability of factor products. The Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation (NHF) has published MASAC Document #252 Guidelines for Emergency Department Management of Individuals with Hemophilia and Other Bleeding Disorders.
According to Donald J. (Donnie) Akers, Jr., JD, the legal counsel of the Hemophilia Federation of America (HFA), speaking at the Coalition Men’s Retreat, this document now represents the “Standard of Care” for hemophilia patients in emergency rooms. The term Standard of Care has specific legal meaning – hospitals, physicians and staff can be in legal jeopardy if they do not follow the Standard of Care. Donnie recommends that all patients carry a copy of MASAC #252 with them, present it to the emergency room staff and tell them that this represents the Standard of Care for their condition. The MASAC guidelines include the following important points, among others:
- Individuals with bleeding disorders should be triaged urgently – delays can significantly affect morbidity and mortality.
- Treatment decisions should be made on the suspicion of bleeding. Administration of factor should be started immediately, not after confirmation of a diagnosis.
- Consultation with the patient’ s hematologist or a Hemophilia Treatment Center is strongly advised.
- If a patient with hemophilia or a parent brings clotting factor to the hospital they should be allowed to use it. (Note that this may conflict with hospital and/or state policy. This is one argument in which use of the term Standard of Care may help. Also, point out that treatment should be started immediately; most hospitals don’t have ready access to factor.)
MASAC #252 can be accessed on the NHF web site, www.hemophilia.org