After mom’s hospitalization and death a year before, I thought I had learned how to proceed when a parent was hospitalized. I knew information was key to anticipating problems and maybe avoiding the overtreatment mom received. I also knew the physician might not be the same as usual one. I had learned to carry a notebook to record the names of all physicians, test results, telephone numbers and anything else I might need at my fingertips.
In November as we approached the anniversary of mom’s fall, hip fracture and subsequent passing, I was in a heightened state of anxiety already. I knew there was a higher than usual probability that a surviving spouse would pass away during the 12 months following his spouses death.
Then dad spent 2 full days in the emergency room. When he was finally moved to a hospital bed on the floor late in the day on Monday he was on “observation status”. See “A Trip to the Emergency Room Leads to a Discussion of End-of Life Issues” for more information about observation patients.
Tuesday morning, before I went to the hospital, I called my father’s Geriatric Physician’s office for the name of my father’s hospital admitting physician. This would be the one who followed my father throughout his hospitalization. They told me I would have to ask the nurses at the hospital, as it was a “Hospital Physician” and not his usual physician.
I spent all day Tuesday in the hospital with dad. In addition to providing dad with a familiar face and place to turn for comfort, I wanted to get as much information as I could about his current condition and prognosis. I was unable to access to dad’s medical records or even to talk to his doctors because I still didn’t the name of his attending physician. He was bleeding heavily but that was all I knew. I asked several different nurses to show me his medical records and they refused as the doctor wasn’t present.
I asked the nurses; “How can I get any information if I don’t know who his physician is and you don’t know who it is?” They said I should call his primary physician’s office. I was frustrated. I said I had already called his usual physician and her office told me it was a “hospital doctor”. Now the hospital staff were telling me they didn’t know who it was either!
I called his regular geriatric physician again but didn’t get a return call until late in the day, after I had returned home from the hospital. I asked the nurse to tell me who my father’s doctor was and told her I was frustrated already because no one seemed to know who it was. She said she didn’t know the doctor’s name, but he was from their office. I asked her to please talk to my father’s regular Geriatric Physician and give me the name of my father’s doctor so I could ask for him in the hospital.
Finally, that evening, I got a call back from the geriatric physician herself. She was trying to explain to me that she doesn’t work in the hospital. “I know”, I told her. “I just need to know the name of his attending physician as the hospital staff didn’t seem to know”. She told me his name and that he was from their office but always worked in the hospital.
All day Tuesday while dad was in the hospital very little seemed to be happening. They were afraid he would fall so they tried to keep him in bed all the time. They wouldn’t allow him to use the bathroom which he wanted to do since he had a urinary tract infection and had to frequently urinate. He was still an observation patient and still had no diagnosis or prognosis.
Dad has Alzheimer’s disease. He didn’t remember why he was in the hospital and why they wouldn’t let him get up to use the bathroom. He was not comfortable. I tried to help by asking the nurses for the things he requested. I could see the nurses were very busy but I felt alone, waiting but not sure what I was waiting for.
I needed to talk to his doctor to get information. I was petrified that something would happen really fast (the way it did to mom) and I wouldn’t be able to stop things from happening. I had no diagnosis to base my plans on. I had no idea how long he would be in the hospital and if he would be able to go back to his assisted living facility from there. I really needed information.
By Wednesday, I still had never seen my father’s doctor. I did talk to the physicians’ assistant (PA) who gave me a little information about his blood tests (urinary tract infection, low hematocrit, poor kidney function values). He was maybe losing too much blood. But the PA had no idea if dad would even be admitted (he was still an “observation patient”) or when he would be discharged or what the cause of the problem was. He said I needed to talk to the doctor for more information. I asked when the doctor would be there. I was told he could come by any time from before 6 am until after 11 pm. And he was the only one who could really answer my questions!
I tried to exercise my HIPAA rights to access my father’s medical records (to see for myself what his doctor may have written). The nurse on the floor said they are not allowed to show the patient or his family any medical information unless the physician or PA is physically there.
On my way home on Wednesday, I stopped by the hospital medical records office and asked for access to his records. They said they don’t release the records until after the patient has been discharged! I obtained a form to request the records but that wouldn’t help me while he was in the hospital. (I never got mom’s records as she was dead by the time she was discharged!). I asked who the HIPAA Privacy Officer was as I needed to know how to access the records now. I was told that the nurse on the floor should allow me access to the records whenever I asked for them. I should not have to wait for a PA or a physician. I asked her to write that down, but she said to just have the nurse call her office if they had questions.
Here I was, so stressed about dad’s care, his diagnosis, his mental state, etc. and I was being given the run around about such a basic question as what was wrong with him!
Wednesday night, around midnight, I was awakened by a call from the hospital. They needed permission to do a procedure on my dad. Well, actually they already did the procedure, getting permission from dad (with documented Alzheimer’s) and were calling to inform me. I was barely awake by the end of the conversation and puzzled. What was it and why? I was up and dressed early Thursday morning but before I even left the house I got a phone call from dad’s PA. They needed permission to give him a transfusion. I said yes, but the panic continued to rise inside me. Why were the doctors only available in an emergency and when could I get real information?
Dad was finally admitted as an inpatient patient (no longer on “observation status”) Wednesday night about the same time as the procedure was done. By Thursday I knew he was being given a transfusion, that his red blood count was low and that he had a procedure wound that needed to heal, still had a UTI and still did not have a definitive diagnosis. And they needed to stabilize his red blood count before he was discharged.
I had passed the first hurdle which was identifying his physician, learning the diagnostic tests planned and getting him admitted as an inpatient. I was told he might need to be discharged before he was diagnosed. The specialist wanted to do his diagnostic scoping procedure in his office where he had specialized equipment rather than in the hospital where apparently they didn’t. And dad had to be cleared of the UTI first before the specialist would see him in his office.
I would like to refer you to another post I wrote “How to Talk to Your Parent’s Doctor” that might answer some of your questions on this topic.