Mom was seen by many physicians every day. She was seen by a physical therapist, a cardiologist, a urologist, a nephrologist, 2 surgeons, an oncologist, a pulmonologist (who was also the hospitalist), and her Dr. T. from her family physician’s office.
Dr. T should have been my best source of information about mom’s condition since he was the family physician. He was always willing to talk when I caught him. However, he was usually not around when I was looking for information. He came early (like 6 AM) or late in the evening. He had no set time to come as he might be called to take care of a patient in any location in the hospital or rehab center. I usually tried to spend the morning and early afternoon with mom in the hospital. I informed the nurses each morning that I wanted to be notified when they saw Dr. T. on the floor so I could talk to him.
I was afraid to go to lunch for fear of missing Dr. T when he was finally there. Usually I had picked up a snack and bottle of iced tea when I arrived and carried this to mom’s room with me, so this helped me delay my trip to the cafeteria. But eventually I was hungry enough that I went to the cafeteria. Sometimes a nurse would call me on my cell phone to tell me he was on the floor, so I could rush back up to see him.
Other times when I had talked to him earlier in the day, I went to lunch while mom was having a test or procedure done, knowing I wouldn’t miss too much. However, frequently I waited for other doctors such as the Palliative Care Team or the Hospice team who also came when they had some free time and not necessarily on a schedule.
Each day mom had a new complication, which added to the number and type of specialists who came daily. Her kidney function tests were abnormal from the first day she was there, so a nephrologist had been called in. Then after the catheter was inserted, she got urinary tract infection and a urologist was added to her list of specialists.
Within a few days after she was admitted, an oncologist was added to the mix. I did not learn this right away but one morning the nephrologist told me mom had a “spot” on her kidney and was being monitored. The spot was a cancer and was not of “immediate concern” but would have to be followed in 4 or 5 months. He did not tell me the oncologist was coming daily until much later but I could see that when the bills indicated that he visited almost every day after she had been in the hospital only a few days.
She had a second surgery because of colon complications following her original hip surgery. This led to more complications and more specialists. She had atrial fibrillation, which continued on and off so a cardiologist was called in. Two surgery groups were coming regularly to check healing scars, etc.; the surgeon who did the original hip surgery and then another surgeon who did the colon surgery.
In addition, the physical therapist was coming every day for the first 10 days or so. By the time mom was brought to intensive care, the physical therapy was stopped.
After she had the second surgery mom developed the atrial fibrillation and was on high levels of oxygen. She was moved to a higher floor and a more intensive ICU where there were now only 2 patients per nurse and she could be hooked up to more specialized equipment. . At this point she was in a private room with a nurse who served her room and the one next to it.
As mom’s condition deteriorated, I started keeping a list of all the physicians who had been in to see her and what each one did. Dr. B was the nephrologist. Dr. A. was the Pulmonologist and Hospitalist, etc. Every evening I wrote out my notes and tried to determine what I knew and what I needed to know. I was trying to figure out what would happen next and what the real prognosis was.
One new concept I learned during this hospitalization was that of the “Hospitalist”:( A physician who specializes in the practice of hospital medicine.) The advantage of a hospitalist is that he is in the hospital all the time whereas the patient’s regular physician used to come in before or after office hours. The disadvantage was that the hospitalist didn’t know the patient, his history, etc. and the patient didn’t know the hospitalist. In this hospital, mom had both Dr. T from her primary care doctor’s office and the hospitalist, Dr. A. The hospitalist seemed to work mainly with patients in intensive care and those with pulmonary problems.
I wanted to know when to discuss end of life issues with mom. I didn’t want to make her give up hope if things were not hopeless. But I was getting mixed signals from the doctors. First, they would say: “She is 90 years old and anything can happen.” Then they would say: “There is a good chance this surgery will help her get out of the hospital and into rehab.” (Which is not the same as a “cure” but no one talked about the actual prognosis – what would the long-term outcome be?)
I finally learned that each specialist would only give me information on his body part. That is: The cardiologist would say: “Her heart is strong”, but wouldn’t tell me about the whole prognosis. The nephrologist would say: “Her kidneys look a little better today”. But, if each body part were doing better, then why was mom doing worse? Why was she moving to a higher level of intensive care? Why was she so uncomfortable? What WAS the actual prognosis?
I found the nephrologist easiest to talk to, so I pressed him for more information. He told me that only the general physician (Dr. T.) or the hospitalist was allowed to give me a complete report. The rest of the physicians were only supposed to talk about their own specialties. The same thing was true for all the nurses. Most of the nurses knew far more than they said. The general rule is that nurses can’t give medical information to the patients. The physicians are supposed to do that. Nurses can tell you how to care for your wounds, etc. but for details of the diagnosis and treatment, a patient or his representative had to talk to the physician of record (or the hospitalist).
For some reason, it took me awhile to understand this and I spent a lot of frustrated time trying to get information from sources that were unwilling or unable to give it to me. I felt like I was always seeking information to make a decision and never finding enough. I also believed it would have helped to have mom’s usual physician (Dr. Sam) to talk to instead of Dr. T. There were no doctors there that knew mom and could help us make the difficult decisions based on her own history and stated wishes.
To me, this was a major failure during mom’s hospitalization – failure of communication that left mom in the dark almost until the day she died, and left me with a lasting sense of personal failure. I felt like I should have been able to help mom more and to help dad prepare for mom’s death — if we had only been able to talk openly about her impending death with mom and the doctors during her last days.