The last two plus weeks have been frantic ones for me. My mother was hospitalized on March 1st after an ultrasound revealed a mass in her colon. The news floored me. Despite her lifestyle (she is a long time alcoholic who, at 84, puts it away like a freshman at a frat party), my Mom has had very few medical problems, and while I fully understand that she won't live forever, I didn't see this coming. In fact, I had spoken with her days before, and she hadn't indicated she wasn't feeling well. The next morning I was on a flight to Sacramento, followed by a drive to the hospital at breakneck speed. I wanted to be able to see my mother before her surgery because I feared the worst. I was afraid she might not survive the surgery, or that the surgeon would open her up, discover cancer, and close because there was nothing to be done. Thankfully I arrived at the hospital a full 2 and a half hours before the surgery and was able to spend some time with her. It wasn't much, but it gave us an opportunity to make some amends. Sitting in the waiting area as my mom endured a 5 and a half hour surgery on the evening of March 2nd gave me a lot of time to think. By the time the doctor finally came into the waiting area, I was was a wreck. The news, however, was better than I had anticipated: there were no signs of cancer. He had removed most of her colon and her spleen because the swelling of her colon had caused a tear they tried to repair but could not. However, he'd been able to keep enough of what was needed to connect her small intestine and so to keep her intact. She would not need a colostomy bag, but it would take up to a year for her intestine to learn to do the work of the colon. They'd had to transfuse her with 2 pints of blood during surgery and asked my permission to give her two more now. She would remain in ICU for 3-5 days and would then need to be hospitalized for another 5-14 days depending on how well she recovered.
Over the next week, I spent hours in the ICU visiting my Mom and making sure she was receiving the best possible care. It was more than a full-time job, and I am certain the ICU staff thought I was a royal pain in the ass, but my mother needed an advocate, and having learned how battle the system when dealing with my own medical issues in the fall of 2006, I was up to the task. However, trying to ensure someone else is getting the proper care is even harder than advocating for oneself. The fact that my mother is like others of her generation who tend not to ask doctors and nurses question and who down play pain, presented an additional challenge. Although everyone on the hospital staff was attentive and well meaning, they were simply stretched too thin to keep on top of everything for everyone. Despite being in ICU with a nurse dedicated to her care and that of one other person, my mother did not always get the attention she needed. If I had not been there to ask questions, to prompt the nurse to check on this or that, to ask to speak with the doctor after rounds, and to follow-up on each and every procedure, dose of medication, test, and the like, I don't know if she would have done as well as she did. To say she had a remarkable recovery would be an understatement. The morning after her surgery, she was signaling with her eyes that she wanted the ventilator removed and was trying to speak. Once they removed the ventilator, she began insisting she needed to be up and walking, and if not for a problem keeping her blood pressure elevated, I have no doubt she would have been trying to walk out the door and head home.
Over the next two days the problems with her blood pressure persisted (a fairly common post-surgical problem in elderly patients), but slowly improved with a combination of meds and fluids. By the third morning after surgery, the physical therapist was working with her and she was walking 4 times a day--a little longer on each occasion. Everyone was amazed. The evening of day three presented additional challenges. That afternoon, due to CA massive economic crisis, the hospital announced the layoffs of 100's of nurses and other employees; I arrived at the hospital for my late afternoon visit and found they were in a "lock down" and were forcing all visitors to leave and not letting anyone in.
Seems that the layoff announcements had been followed by a number of bomb threats, several so detailed that the hospital was forced to enter a lock-down. Not to be deterred, I managed to talk my way in to speak with security, told them my mother was in the ICU and I was here from out of state to see her. With a little fudging of my itinerary, several emotional appeals, and some good arguments, I managed to convince them to let me in. The good news: I was able to spend the evening with my mother and keep track of her care; the bad news: I wasn't allowed to leave the hospital until close to midnight.
On day four post-surgery, there was a clear drop in the number of nurses, doctors, and staff in the ICU, and my mom had a bit of a setback. Despite being on a liquid diet, she was unable to keep down any food. Fearing she might tear her sutures or aspirate vomit into her lungs, the doctor wanted to reintroduce the ng tube; my mother refused. Thankfully, the vomiting stopped, and once again she was up and walking around the ICU.
On day six, I headed home. My mom was being moved out of ICU that afternoon, and although there was some concern about swelling in her feet, her doctor was confident she was doing well and would probably be released in 5-6 days. I hated leaving, but my sense was that the worse was over.
I could not have been more wrong. Not to suggest that I am some sort of expert medical advocate, but as soon as my plane landed, things began to fall a part. First, that same evening the care coordinator informed me that they would be releasing my mother the next morning. The fact that she would not even be out of ICU for 24 hours before her release didn't seem to phase anyone there. They told me they'd arrange for a nurse to drop by the house a couple times a week and provide a walker, and when I suggested they were moving too fast, that my mother was not yet able to care for herself, and that the only one who would be with her was her 87 yr old partner who had Parkinson's disease, I was told there was nothing they could do.
I spent hours on the phone that evening calling anyone and everyone I could think to call, and finally made my way up the hospital administration ladder and spoke to the nursing director who told me the only thing anyone had said that night that seemed reasonable. My mother, he explained, although not actually able to care for herself no longer met the medicare requirements for continued hospitalization. This, he explained, happens all the time and is one of the primary reasons they see patients being returned to the hospital after being released. The system, he said, "is broken." He continued: "We known these patients are not 
ready to go home, but our hands are tied. I see this every day, and I talk with folks like you every day, and there is nothing I can do. The fact is, after a point, we don't make the decisions, the insurance companies do."
There it was: the truth about the state of health care in the US. This is exactly what all the debate about the health care bill is about: insurance companies control who gets treated, the kind of treatment they receive, the duration of that treatment; the costs of treatment, etc. To understand this is one thing, but to know your loved one is at the mercy of a broken system is something else all together. Despite all my resources--financial, personal, and intellectual--there was nothing I could do. Nothing.
I awoke the following morning feeling helpless and angry. I had a vision of storming John McCain and John Kyl's Washington offices and dragging them to Marysville, CA to explain to my mother why they continue to block health care reform. I imagined having Barbara Boxer by my side promising my mother she would receive the best care available as we both stared McCain and Kyl down. In the end, though, my mother's body stepped up in an odd way. That morning, her blood work showed her white cell count was high indicating some sort of infection. She could not be released after all. The state of our health care system is such that I celebrated the fact that my mother had an infection.
Tests showed she had a urinary tract infection. That infection kept her hospitalized for 5 more days. In the meantime, her feet began to swell to the point that she could not bend her toes or stand. She has congestive heart failure and, because of the low blood pressure problem, had not been on her medication for almost a week. They attributed the swelling to that, inactivity, and the amount of fluids she had been given to raise her blood pressure. On March 12th she was transferred to a short-term care facility where they were to focus on physical therapy to get her back on her feet.
That was plan. Unfortunately, the short-term care facility seems to suffer from the same under staffing patient to care giver ratio problem that plagues many hospitals and care facilities. The facility has one doctor who visits patients once a month. Physical and occupational therapists don't work on the weekends, so my mother lay in bed for three days before anyone in physical therapy saw her. On March 15th the PT staff and OT staff (occupational therapy) met with her; the next day they were supposed to work up a care plan. Although I have been calling each day, I have yet to be able to speak with anyone in PT or OT. This afternoon, after my mother didn't answer the phone, I called the nurse's desk. "Oh," the nurse said, "she's been transported to the ER, didn' anyone contact you?" No one had. Seems the PT folks had finally started to work with her and discovered her feet were red and sore to the touch. Duh, I had been telling the staff that everyday this week.
Thankfully, the ER doc ran lots of tests and discovered she has gout. He gave her meds and sent her back to the short-term care facility. I called them to tell them she hadn't eaten all day; they didn't even know she was on her way back. I spoke with the director and demanded I be given a daily update that included the plan for the day and a call at night to tell me what had been accomplished. I am contemplating a return; advocating at a distance just doesn't work.
The fact of the matter is this: if you are hospitalized or admitted to some sort of care facility, you need to make sure you have someone working as your advocate. That person needs to be able to keep track of your condition, the treatments you've received, your medications, what the doctors and nurses have said, and to ask for what you need. S/he needs to keep notes--to document everything--follow up, and if necessary, demand you receive the care you need.
Getting sick in America is a dangerous proposition, and without a health care advocate, it might just be a death sentence.
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