Access to Your Record Can Save Your Life
Regina Holliday is an artist and mother of two young children. As her husband was dying of cancer, Ms. Holliday fought a protracted battle to get access to her husband’s medical record. Here is her story.
My husband, Fred, was dying of kidney cancer, and we couldn’t get his medical record. His life would have been so much better and potentially longer with that information.
Fred was this great guy, and he was hilariously funny. He got a job as an associate professor at American University teaching film, and we were just on top of the world, because that was his dream job.
He started to feel sick – tired at first. His doctor told him he had hypertension. But he was in a lot of pain, so much that he went to the emergency room. He was given pain medications and sent home.
The pain never went away. In March, it got so bad that the whole family went to an ER, and we waited for three hours with our children. And they said, “You know, we’re just backed up, so you might as well just go see your regular doctor next week.” And we did. And when we saw the regular doctor, I demanded an MRI to find out what was wrong with him after three months of appointments and medication. Four days later, the doctor calls my husband on the phone and says that he needs to make an appointment with an oncologist – a cancer doctor.
A Missing Medical Record Delays Care
My husband went to the hospital for tests, and I went to work. At 11 a.m., he called and said, “Reggie, the doctor was just in my room and says that I have tumors and growths throughout my abdomen and a three-centimeter tumor in my kidney. I’m so scared. Could you please come?”
I left work as fast as I could. But when I got there, the oncologist in charge of my husband’s case had already left town for a medical conference. He would be gone for days and would not respond to any email or calls, as I scurried around the hospital trying to find information about my husband’s care and his medical record.
After four days at the hospital, one doctor came into his room to look at a pump. She wasn’t talking to us at all. So I asked, what about the bone scan, the PET scan – what were the results? And she looked at us and said, “You mean nobody’s told you?” No, no one had told us.
That night, I found out that my husband had Stage IV kidney cancer, and he probably wasn’t going to live very much longer.
Fighting for Access to Records
In the following days, I fought for access to my husband’s medical record. Finally, I was told it would be 73 cents per page – for a huge document! – and a 21-day wait to see my husband’s medical record in the hospital in which he had been continuously hospitalized. I couldn’t believe it.
I fought for transfer to another facility. But when we got there, we had been sent with an incomplete and out-of-date medical record, and that meant that his new medical team couldn’t provide care or even feed him. We waited for six hours while someone tried to recreate a medical record using a phone and a fax machine.
Finally I got the record. I gave it to the new doctors, and they looked at it. Then they gave it back to me and said, “Here, this is safest with you. If you always have access to your husband’s medical record, he’s going to get the best care.” I read that document, and I was astounded because it was filled with actionable data that would have impacted his care and created a better living condition for him, and for us.
My husband came home to die. It was hard. But, I had access to the data, and I had his record that I could reference, so I could take care of him.
Other people don’t have to suffer like he did. I really believe that access to your medical record can change your life, can save your life, but also at the end of your life, can make you happier and whole.