“One of the great challenges in healthcare technology is that medicine is at once an enormous business and an exquisitely human endeavor; it requires the ruthless efficiency of the modern manufacturing plant and the gentle hand-holding of the parish priest; it is about science, but also about art; it is eminently quantifiable and yet stubbornly not.”Robert Wacher
She’s the kind of patient doctors would fight each other to have. Sweet; bright; articulate. Most important of all: patient. Most people believe illness is somebody’s fault. The doctor missed something. The nurse didn’t say the right words when she or he gave advice. Their parents failed to instill some nugget of wisdom in their brains. She understands that this is life, and things can go wrong.
A colleague referred her to me because she had lupus. For some time she had managed to function with low doses of medicine and occasional over the counter anti-inflammatories. When I met her the fatigue was seriously interfering with her job and her home life. I thought that she was a bit scared. One hears a lot of bad things that happen to lupus patients. But she had done well for quite a while, and it’s unusual (but not impossible, as we shall see) for significant organ damage to occur after years of body and disease living in relative harmony.
She had been married over two decades. They both worked outside the home. The children were gone. They had an effective social network. They were nowhere near retirement, but had quite a bit of fun together.
I felt that she had a mild flare of disease. I prescribed medicine; she improved but eventually developed side effects. Other drugs were tried, not as successfully. They did not last long. Prednisone helped, but she was very slender and the idea of gaining thirty pounds did not appeal to her.
We managed to keep things together for a few years. Two years ago she called to tell me that she was having fevers every day. One thing led to another. To my surprise and yes, with some panic, I realized that she was seriously ill and would need to be hospitalized.
The disasters kept coming. Her lungs failed. Her kidneys stopped working. She had to be heavily sedated, to the point where she was unconscious most of the time. Later on she developed brain involvement, and her liver tests were way beyond the normal range.
She was transferred to intensive care. Five specialists beside myself were involved in her care. There were daily lengthy visits from the doctors; the nurses; the respiratory therapists… It would be very difficult to keep track of every opinion; every change in medication dose; every twist and turn that her body took.
Of course I visited every day. There were two constants. First, her husband. He was always at her bedside, whether I made my rounds early in the morning or late at night. Second, the hospital computer system. Our institution had switched to electronic records a few months before she got sick. I was able to access her record from my office; from home; from anywhere that there was an internet connection. The combination of these factors saved her life.
I’ll give you an idea of what it was like. As soon as I walked into her room I asked her husband how things were going. He was always sitting three feet away from her, his face buried in his laptop. He was getting work done, both for his living and her life. He gave me a complete account of her past 24 hours. He knew every doctor’s name who had come in, and their specialty. He was not shy about asking what their thinking was; what changes they intended to make, and when. He insisted on being able to communicate with them at the drop of a hat. Whenever any piece of contradictory information came his way, no matter how seemingly insignificant, he made sure that all people involved were notified until a solution was found.
In the old days the more experienced physicians would have found him bothersome. I welcomed him to the health care team. He was doing a big chunk of my job for me, and if it meant an extra ten minutes away from my office to get this type of information, I thought this was a more than fair exchange.
The computer was the other piece. In the old days doctors would often write succinct, many times illegible notes in the chart. The nurses and the therapists wrote their findings on a separate part of the paper record. Most doctors never bothered to read what they had to say. The lab tests were under a separate tab, as were the cardiac and pulmonary findings. It was a tour de force to go back and forth among hundreds of pages to get an accurate idea of what was really happening. The last inconvenience: once the hospital stay went beyond five days charts were “thinned.” A nurse, who should have been spending time with the patient, was assigned to take papers out of the chart so that the folders did not become excessively heavy and unwieldy to peruse. If I wanted to find out what the patient’s blood count had been two weeks ago, I had to search for the “thinned” pieces of paper somewhere. They were not always available.
Now, everything was there at the click of a mouse. I could make rounds on my very sick, very delightful patient three or four times a day without having to transport myself to her bedside. I could check on her temperature before I went to bed, and it would only take three minutes to do so. I could read everybody’s notes. I could see what the plans were, and when I did not get a good idea of where we were going, for many of the docs I could flash an e mail to their Inbox, asking questions or making my points.
It took more than two months, but she walked home. With very functional lungs, and kidneys. Her brain and her liver slowly came back. If you saw her now you’d never guess that she was half a step from disaster not long ago.
Technology. We often say that we could not live without our smart phones, or our facebook accounts. We have no idea how accurate these perceptions are. On the other hand, there are dangers. When the computer goes down medical care suffers. If an evil mind decides to use his or her knowledge to make our lives miserable, they can easily do so. We sometimes fail to realize that we may be going too far; that there should be strong ethical limits to what we attempt to do.
My patient’s story brings to light the best way that computers can be used. A devoted husband who did not have to lose as much time from work as he would have otherwise. A brilliant man who was able to organize an extremely complicated case with a dismal prognosis because of his superior knowledge of bits and bytes. A doctor who decided early on that he was not going to moan and gripe about having to learn something new at his relatively advanced age. One who was not afraid to take a step forward, no matter how uncomfortable the new ground felt when he first ventured in.
I write this blog two thousand miles from home. I have just finished reviewing the lab reports on twenty patients. I was able to communicate with my office to make sure that continuity was established. All of this done, and most patients have not seen the machines behind our very human interactions. They have not missed the warmth and closeness of the old days.
It’s still, after thousands of years of doctor- patient interactions, all about the caring and love.