On Tuesday July 13th, 2010 I was asked to present a speech at the Department of Health and Human Services representing the patient voice. This is the text of that speech.
I am artist, a mother and I was the wife of a great man. I know in a very personal way why patients need access to the electronic medical record. Last year at this time, I was painting a mural on a wall in northwest Washington, DC. I was a new widow, my husband had died of Kidney Cancer on June 17th. The painting was called “73 cents.” It depicted our family lost within a closed data loop, without access to information.
From January to March of 2009, my husband, Fred Holliday, went to his doctor a dozen times for pain. Each time he was sent home with pain meds and he never received an after-visit summary. He visited 2 ER’s with extreme pain and was sent home with pain meds each time. By mid March, Fred was taking four types of pain medication, two types of muscle relaxants and four types of laxatives and we had no diagnosis.
On March 25th, Fred was hospitalized for tests.
On March 27th the oncologist told my husband while he was alone that he had tumors and growths.
The oncologist then left town for four days.
My in-laws and I spent the next days begging for information from Fred’s doctors.
We were continually hospitalized and had no access to the written record. Fred suffered additional injuries due to a lack of communication between staff and a lack consultation with his record. After four weeks of enduring the utter horror of not knowing what is going on. I went down to medical records and asked for a copy of the electronic medical record. I was told it would cost 73 cents per page and there was be a 21 day wait. I was astounded. This was a state of the art hospital, yet they were asking us to wait 21 days and spend hundreds of dollars just to read Fred’s record.
The next day the oncologist said, “We are sending you home on a PCA pump.” The doctor left and we burst into tears. Fred turned to me and told me go after them and to try to get him care. We were transferred to another hospital five days later, with an out of date and incomplete transfer summary and records. Fred was denied food and pain meds. for six hours while the staff of the new facility tried to cobble together a medical record using a phone and a fax machine.
I eventually got a copy of Fred’s record and –despite its many errors– it became a virtual bible that we used to guide his care for the last 56 days of his life. There was not a day I didn’t reference it, and that information extended Fred’s life helped create a fragile peace within our hearts; for there is no greater sorrow then watching your loved one suffer while you feel helpless because you don’t have the information to know what’s going on. I don’t have a back ground in medicine, but I know enough to help. With access to his record, I could explain treatment options and help ease his mind.
This is why I paint. This is why I speak, so others will not have to suffer as we did. We are all patients in the end. We all deserve to be treated with dignity and respect. I will not stop, I will not give up, until we get change in this nation, until people get taken care of, and we all have the right to access our own information. Thank You.