Medicine For People!
The Story of Ralph: Protocols vs. the Person
- An Independent Man
- Back From the Edge
- Letting Go of Heroism
- Nuances in Medicine
Most of us seek to be perfect in what we do. We want to do a good job, and that's commendable. However, there are times when focus on the protocol can actually lead to low results. This month's newsletter is about what happens in the field of medicine when protocols meet humanity.
Ralph – An Independent Man
My patient Ralph was a man who had been born with a mind that gave him a simple outlook on life. He lived alone and was greatly proud of his own independence. He was gently and diplomatically supervised by his sister, who also served as his legal guardian. She lived nearby with her family. Though he was now retired, Ralph's steadiness and dependability had served him well in employment for many years. I think he respected himself completely, and he insisted on respect from others. Perhaps this is why he found standard medical encounters unsatisfactory. Medical people tended to mistake his uncomplicated demeanor for an inability to know his own mind or make decisions about his own life.
Ralph had numerous medical problems, including diabetes with its complications, seizures, high blood pressure, and leukemia. Fortunately, his leukemia progressed at a glacial pace, so it had not interfered too much with his activity. He was on several medications, and getting him to take them was never easy. So in terms of treating the leukemia, his sister and I felt that he would not easily tolerate the confusion of needle sticks, side effects, and frequent trips to hospital clinics. We suspected that treatment of his leukemia would shorten and degrade the quality of his life, not lengthen and improve it. Time passed. I had a hunch that Ralph had known that his strength was failing, but not wishing to alarm his sister, he did not tell her.
Back From the Edge
One morning a neighbor found him down on the ground in his driveway. He was taken to the hospital and diagnosed with, among other problems, severe kidney failure. Initially, the doctors felt this condition would require dialysis. Thankfully a very talented nephrologist was called in and pulled him back from the edge of that particular cliff. The new treatment necessitated adding several medications to his collection. As much as he wished to return to his own home, his health did not permit and he went to live with his sister.
A new problem arose. Once he had taken his morning medications, he fell promptly asleep and remained so for much of the morning. He was unusually lethargic in the afternoon as well. His sister brought him to see me. Going through his list of 15 medications I picked the five least important and advised him to stop those. He expressed satisfaction with this advice and sure enough, began to enjoy his mornings once more.
Letting Go of the Protocol
I telephoned the nephrologist to bring her up to date. Her first words were "but I worked so hard to bring him back. Those medications should ensure his kidneys will last as long as possible. And why aren't you going to initiate treatment for his leukemia?"
I pointed out that he might live much longer with her medication, but that since he would be sleeping or groggy through most of it, what was the point? As well, it appeared his kidneys were now doing reasonably well without them. In every encounter I had had with him, he had indicated that his major priority was independence, taking care of himself, and enjoying his days, something these medications absolutely prevented. The nephrologist seemed upset. I gently pointed out that his sister and I had long worked to make his life as pleasant as it could be. In our view, now that the nephrologist had succeeded so well in saving his kidneys, a continued medical full-court press would only be an assault on his well-being. I'm not sure she totally accepted this point of view, but she did agree to work as conscientiously as she could from her side given these new constraints.
It always impresses me when physicians such as this nephrologist can pull a patient back from the edge, even when the patient seems to be trying so very hard to die. Such work is not easy. It requires arduous upfront study and training to develop those skills, emotional steadiness, meticulous attention to detail, and a certain kind of courage. (Medical decisions are rarely as clear cut as an attorney can make them in the courtroom.) Those of us in primary care rarely enjoy such rarified areas of expertise, but we do understand the big picture. Much of our job is painting that picture for patients and, sometimes, for the specialists.
Nuances in Medicine
Sometimes in medicine, as in other aspects of life, we are asked to do two conflicting jobs. One job is technical – as beautifully exemplified by the nephrologist. The other job is to understand our patients' lives and respect their wishes. These two tasks are not always in alignment.
Modern education systems are excellent and train people in particular technologies or fields of knowledge. What we need to do better is to place that specialized knowledge in relationship to the greater world around us. You can take an electric saw, push the button, and that blade will confidently go through whatever is adjacent to it. We physicians, hopefully, exercise more judgment than a power saw. If someone presses the button to engage us in a task, our responsibility is to be sure we're not cutting through something vital.
Over the past couple of years, researchers have found that aggressive treatment of high cholesterol, or high blood pressure, or diabetes, or certain minor infections that don't need antibiotics – all of these treatments can do people more harm than good. For example, in the past we always treated people with bacteria in their urine with an antibiotic. Now, if they don't have symptoms, we usually don't. There is little benefit and a real chance of harm by altering their intestinal bacteria. (But if you have some abnormality in your urinary collecting system, go by your doctor's advice!)
Truly, I don't know if my recommendations for Ralph are the correct ones. Earlier in my career, I've been part of larger medical teams engaged in more invasive procedures and protocols. Sometimes we'd embark on treatment in situations like Ralph's and found, as time would have it, that the patient would have been better off had we left them alone.
That colors my decision with Ralph. We must always seek for perfection in our medical duties, and sometimes that means accepting what is happening now, and not imagining some perfect future.
Medicine for People! is published by Douwe Rienstra, MD at Port Townsend, Washington.