The Death Rate in America: One per Person

You're not supposed to have favorite patients. Every patient deserves to be treated with the same professionalism, respect, and care. I do think it's human nature, though, to enjoy spending time with certain individuals. Or maybe I'm simply justifying the fact that I have favorites. All I know is that there are patients that make me particularly happy when I walk into the exam room. These are typically patients (and often their spouses) with whom I've developed a strong relationship. They're pleasant and caring, willing to work with students, and often have a good sense of humor. Some of them have been very sick, others are just returning for another routine checkup. I hope that having favorites doesn't make me a bad doctor.

About a month ago, one of my favorite patients was diagnosed with amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease (NB: a significant amount of patient information has been changed for privacy reasons, but how this story has affected me remains true). ALS is a disease of one's nerve cells, specifically the ones that are in charge of "voluntary muscle movement." Very slowly, the patient begins to lose muscle control and coordination. It affects one's ability to walk, stand, and sit upright, speak, swallow, and eventually breathe. Death usually occurs within about 3-5 years. During all this, cognition is generally unimpaired. Your body dies slowly, but your mind knows exactly what is going on.

I can't even begin to understand what must have been going through my patient's mind when he received this devastating diagnosis. From the perspective of a budding clinician, I can say that while standing in that room, I have never felt so helpless. In medicine, we should be able to do something. At least something. Your appendix is acting up; we can take it out. You're in pain; we can take the edge off. You can't sleep; here's a pill. Isn't that what we do? Cure? What happens when there's no cure?

This diagnosis, with all its difficult life and death issues, happened during one of my Neurology clinics on Thursday afternoons. Neurology is one of the highlights of my week. Not only is it a great clinic, but it's a specialty where the physical exam is paramount. The steps and tests are methodical. Diagnoses can be made with your fingertips. Simply by watching how a patient's eyes track the movement of your finger, lesions of the ocular muscles and deep brain can be brought out in physical form. With a simple tap of the patient's knee cap, one can tell if disease is present in the brain and spinal cord or somewhere peripheral. Just by inspecting a patient's muscles for atrophy or hypertrophy, the clinician can learn so much about the patient's condition. The Neuro exam is a true art; the master clinician diagnoses with laying of the hands. And yet with all this information, moments later I find myself standing there, feeling helpless. You have ALS, and we can't cure you.

Maybe that's why I'm drawn to the operating room. "When in doubt, take it out." When a hug and reassurance is all I can give, internally I can't stand it. Of course I should point out that with many of these degenerative diseases, clinicians can ameliorate some of the disease's side effects and perhaps slow the progression of the disease. There is potential for quality of life improvement. But this patient will continue to deteriorate, and that's what makes it so hard for me. Dr. Nortin Halder, a UNC physician who has written extensively in the medical literature and lay press, has given me my favorite medical quote to date: "The death rate in America is one per person." Everyone dies.

That's true, but it doesn't make it any easier.

I had to write about this experience because it is a lifelong dilemma for physicians. Understanding that one can't "fix" everything is difficult for some doctors to grasp. I've heard plenty of stories about physicians who were willing to go to extraordinary lengths to prevent death. If this is our goal as physicians, we will always fail. I guess I am beginning to understand where this mentality comes from. Here I was presented with a patient, one of my favorite patients, who is sick. I want to make my patient all better, but I can't. There's no Band-Aid, there's no pill, there's no procedure. The death rate in America is one per person.

However, there are some things we can do. Knowing the available resources is a good start. These illnesses can be an enormous financial burden (not to mention the emotional toll these conditions take on patients and their families). ALS and some other neurodegenerative diseases are listed by the Social Security Administration as Compassionate Allowances. These 113 medical conditions allow patients to be fast-tracked to disability status because these diagnoses are "so serious that their conditions obviously meet disability standards." There are also support groups, and there are medicines to take the edge off of symptoms (including the psychological sequelae, such as depression, which are extremely common). And then there's compassion.

I don't know how to end this post. I don't have a resolution or a solution. This is a patient that I think about frequently. He is a person who makes me think critically about both life and death.

His and my own.