Saturday, November 29, 2008
I know this goes against the main thoughts evoked by this blog's title. However, I'm the absent minded geek and since its my blog I thought I would write what plagues me today.
I am shocked at the lack of consistency in hospital care. I'm shocked at the conditions I have been over hearing as I sit with my wife in a hospital awaiting further news of her condition.
My wife has Crohns disease. Diagnosed when she was much younger in 1997, she has had two resections, one in 2000 and one in 2004. She has been in remission for 5 years. Just three weeks ago she began to have sharp pains just after eating. We went to the ER and heard the news we feared most, her Crohns was active again.
Since then we have seen her specialist, had blood work done, and this past Wednesday a colonoscopy was preformed. The colonoscopy confirmed the crohns but showed a much less active disease than the CT scan had shown. Crohns, as I'm learning, is hard to diagnosis since from a CT scan it looks like any other inflammation of the bowel. Her past inflammations have caused a thickening of her transverse colon and a stricture, or narrowing of the bowel, where her last surgery brought the small and large intestine together. This means her Crohns could be in remission and still show as abnormal on the CT scan.
Thanksgiving isn't very kind to active Crohns patients, all that yummy food they are not allowed to have. She ate something, not knowing it would aggravate her condition, and Friday she began to have the pains again. Saturday she vomited and it contained food that had been through several stages of digestion(that's a delicate way of putting it).
Now we had a long, but fairly pleasant ER stay at our home town hospital. The moment they brought her into the ER they listened to us when we said she had Crohns and immediately ordered a CT scan and blood work. The longest part about our stay was the 3 hours to get the contrast down and then the 3 hours of ping pong between on duty doctors to specialist pa to specialist doctor all to weigh our options for her best care. At the time we felt it was best that she be comfortable and not stressed. Stress it seems brings on the outbreaks more often than anything else. So we went home and have been working on her active Crohns as out patients.
Which brings us to our out of town ER experience. Saturday with the vomiting we felt it best to get her to the ER. Her specialist at home felt it best that though we had a fairly short drive home, she should get to the ER as soon as possible and stay in the town we were in. We arrived at 9 in the morning and were brought right in to the ER, so far so good. They were quick to draw blood work and the ER Physician felt it best to get X-Rays and a CT scan. Again quick to recognize the diagnostics need to confirm some of Crohns worst symptoms, strictures and fissures. After 2 hours of waiting for her CT scan and no contrast in sight, I was informed by the ER Physician that her blood work was normal and she was being admitted.
Huh? Everything is normal, so far as the diagnostics you have preformed have determined and she is to be ... admitted? Where is the CT scan? Where is the X-Ray?
It seemed the hospital procedures were to admit anyone whose procedures take over 3 hours, ie CT scan with ingested contrast. However, ER patients get priority to the CT scan. So to admit her would push her down the list of people who were getting diagnosed. Broken Arms and sprained ankles would be ahead of her because they required only iv contrast and not ingested contrast and thus they did not require admittance to the hospital.
Now I realize my rant is beginning to attack hospital administration. Its an area I have very little experience and only as a patient's husband. But in the 2 hours that she waited for a CT scan only to be told she had to be admitted couldn't she have finished the contrast (this ER's was a 2 hours not 3 hour solution) and had the CT scan. Over crowding and a lack of staff because of the holiday could contribute to the crossed wired delay in contacting us about being admitted, but it doesn't explain what happened next.
I had explain to every professional that walked in. My wife has crohns, she is being treated by Dr X in Y city, we are from Y city and are just a few blocks from N hospital where the Dr X is located. I want to get her back to Y city so that I can be there for her while ensuring our home and pets are taken care of. My main concern is that there is could be perforation of the bowel and it would not be safe for her to travel.
The internist who is assigned to the ER group we were in comes down and says they were admitting her. I relayed my story once again and asked how would she be transferred if we allowed her to be admitted. Basically Act of God. Medical transportation, requests from the receiving hospital to the current hospital, red tape out the butt. I asked him if her bowel was perforated and he said the blood work was normal so most likely not. In consultation with a family member who works in hospitals I stood firm to my request for a CT scan before admittance. Didn't know that would get us kicked out into the hall.
6 hours later, sitting in a hallway, she gets her CT scan. An hour later, they want to admit, they saw two stricture. The ER internist says its out of his hands and in the hands of a surgeon. We're bounced to the on call Surgeon who rumor is a bit trigger happy and not very good.
Then came the family member, they knew the system. They knew the doctors, we got transferred to a doctor who my wife had seen in 2004, when she was returned home from her last resection. She had developed complications, pneumonia and a DVT, and required to be hospitalized again. They found a stricture in 2004 and wanted to operate, this doctor was called in and determined that operating wasn't necessary.
The doctor looked at her two strictures, one was from 2004. I showed the colonoscopy, the doctor said the main one looked the same as last time. The doctor was concerned about the small intestine stricture. Operation was the last resort, we picked out a gastro doctor to see on Monday and a general group doctor. A NG tube was to be inserted to help relieve the pressure, and after consulting with her regular specialist, antibiotics, anti-inflammatorys, and a steroid were prescribed. Bed rest, observation, and hopefully she can go home Sunday or Monday. Finally a doctor who took her history, talked to her specialist, and made a cautious, educated decision.
I sit here and wondered what went wrong. Should I have ignored her doctors gut feeling and taken her home? Did I just get the worst initial doctor in the hospital? Was hospital protocol so convoluted that unless you have a guide you are going to get burned.
If her family member had not been near by I have no doubt in my mind I would be writing this from the OR waiting room, hoping and praying the hotshot had not killed my wife. What protected others from falling for the traps?
Why is it that her medical records are not centralized. If her records were retrievable by each admitting institution, they would have access to previous CT scans like the one 3 weeks ago. They could compare today's test with all tests done on her, during active Crohns, and when its in remission. There would be no need to jump to surgery, as one of the strictures would have been easily explained in her records. Her current attending physician would have his prescribed treatment for her, and the new doctor would have all of his contact information.
I have come to the conclusion, that hospitals, like other public benefit institutions (like schools), suffer from a lack of technology. I'm sure my small government conservative family sees my liberal sideness headed toward government over site, but I'm headed in a completely different direction.
Who would hold this information? If I'm advocating for free enterprise and capitalism, then I have several options. The first is the insurance agency, they are required for each visit, and they could save money by helping doctors eliminate unnecessary procedures by providing all previous history. Another company could also become involved. Insurance agencies and Hospitals could belong to this company's archive group and then patients would be placed in the system. Institutions belonging to the company's group could peruse a patients previous records. For a small fee the patient could have access to their records at any time allowing them to bring records to doctors who are not members of the group. This would generate publicity for the group and bring more doctors in.
All of this effort requires technology. Computers have the power to unite us in ways we have yet to fathom.
UPDATE 1/09: I have learned from my wife that the hospital her specialists, all belong to the same hospital and that hospital or some group associated with all of them have a way of storing her records and sharing them. Its a good first step.