Medicine For People!

March 2012: The End of Life: Who Decides?

Seagull at Point Hudson

The Big Man

The man who entered my examining room was a giant. If you asked him his race (it was 1978), he might have called himself black. He worked as a butcher in a large meat packing plant in the industrial section of Milwaukee.

He was a gentle man, and spoke in a soft voice as he explained how, over the previous months, his strength had melted away. His muscles still bulged but it was all he could do to get through the day cutting meat.

I enjoy diagnostic challenges and was determined to find the cause. There was no obvious explanation so we went through the details of his symptoms, his exam and then exhaustive laboratory work. I found no clue except an unexplained anemia and elevated sedimentation rate (the rate at which red blood cells settle in a test tube). The next step was a hospital workup. I called in our hematologist/oncologist, a competent and caring colleague who went over the man with a fine-toothed comb and found no evidence of blood disease or cancer. He got a CT scan and found it normal. He considered every disease he knew and then said, "I can't find anything wrong. He'll just have to live with it."

I had gone to the Mayo Clinic for courses on several occasions and was quite impressed with the thorough, almost obsessive approach the physicians there used. Against the hematologist's recommendation, I referred my patient to the Mayo Clinic. A couple of weeks later I heard back. They had done a different kind of imaging study, had found that his spleen and some lymph nodes were quite enlarged and determined that he did in fact have an unusual kind of lymphoma. They had started treatment and felt fairly confident that they would be able to knock this down and have his strength return. Unfortunately, the butcher did not feel so good about it. He seemed quite disheartened the next time he visited me. I assured him that the Mayo Clinic was a topnotch place. They had said he would get better! That made no impression upon him. He still felt exhausted. In fact he dwindled away over the next year or so until he died.

At the time I gave the Mayo doctors the benefit of the doubt. They said he should feel well and he didn't. There must have been something wrong with the butcher. Maybe as a black man in Milwaukee he had had to maintain a certain amount of interior strength to make it in a white-dominated world. Maybe he experienced his loss of strength as an inability to care for himself in this "play for keeps" world in which we live, and he just gave up.

An older doctor now, I realize we are prone to overestimate sometimes the benefit we provide people. So many times someone has returned to my office for follow-up of problem.

"How did that that initial treatment work for you?" I'll ask.

"Oh, I guess maybe I felt better sometimes."

"It didn't work," I'll summarize. Every time, the person gives a quiet sigh of relief. We're not going to judge success by the doctor's standards. We'll judge by the patient's experience. In this case the first try did not succeed, so we'll move on to something else that might.

So I'm pretty sure I misjudged the butcher. Mayo apparently did succeed in identifying the problem. They did not succeed in restoring his strength.

The Seagull

One day long after these events, I walked down the beach at Point Hudson. In the distance a seagull rested just at the edge of the water. The waves lapped up to where the bird sat. As I walked closer I was surprised that the bird did not fly away. I walked right up to it and looked at it. It looked back at me. I realized this was a dying gull. It looked good from the outside and obviously had been able to fly until some minutes or an hour ago. It had settled down here because it could go no further. It had no choice but to sit here and wait for death to come in whatever form it would.

The birds teach us this. We can live and fly right up to the end. Birds do it without pockets or bank accounts. Whatever grace they have, they maintain until the end. Looking back at the butcher, I can not judge him any more than I can judge the seagull.

Knowledge of biology greatly expands our understanding of human experience. Just as the butcher and the seagull turned from active life to an acceptance of death, so does each individual cell do the same. Biologists call the process "apoptosis", in which a cell initiates a set process of self-destruction, leading to its own death. Like the aged Eskimo going out onto the ice to await death and ensure the survival of his or her children and grandchildren, the cell dissolves its own structure in order to ensure the survival of the rest of the organism. Cells which fail to do this can destroy the entire organism through unrestrained growth as in cancer.

The butcher and the seagull turned that corner before my eyes.

To Cure Sometimes, to Relieve Often, to Comfort Always

These observations clarify my task as physician. While life remains a possibility and something valuable to the patient, my job is to engage every effort to facilitate that, even when a specialist decides "there's nothing more we can do." We do not, however, wait until treatment is futile to engage comfort measures. European doctors engage hospice services well before treatment is a lost cause, because people live longer when made comfortable. We do the same. Finally, I've seen people turn back and forth at the end, one day ready to let life go, and the next finding new resolution to fight and live.

Mine is not to second guess, but to honor each person's life experience, judgment, and biologic imperative.

story: The Big Man, 1980


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Medicine for People! is published by Douwe Rienstra, MD at Port Townsend, Washington.