Patient Ed

Dr. Goldstein looked with concern at the small man lying in the ICU bed. The nursing home had brought him to the hospital because of lung congestion. Dr. Goldstein glanced back at his notes: Ed, age 67, a white male with diabetes, high blood pressure, and poor vision. Somewhat mentally retarded. Dr. Goldstein knew from past experience that Ed functioned at about a 10-year-old level and tended to think very literally. Oh yes, and a hearing problem, thought Dr. Goldstein, seeing Ed’s hearing aid gleam under the room light. “Ed,” Dr. Goldstein said loudly. “Ed, you have no control over your esophagus. When you swallow, food and water are going into your lungs, which is making you sick. You have developed pneumonia from the infection. We can treat the pneumonia, but we need to put you on a ventilator and a feeding tube. We’d sedate you so that it wasn’t uncomfortable.”

Ed stared up at Dr. Goldstein, blinking several times. His right eye drifted off to look into the corner of the room, but his other eye was focused on Dr. Goldstein.

“Do I get an operation?” Ed asked. “OK, but I don’t want tubes, and please don’t cut off my big toe.”

Dr. Goldstein sighed. Ed was running a fever and his oxygen levels were low in his blood. It was hard to talk to Ed in the best of times, so Dr. Goldstein wasn’t completely sure that Ed had understood him now. He tried again, shouting more loudly. “Ed! You have pneumonia. We need to treat it. You are very sick. We need to put in a ventilator and a feeding tube. Once the pneumonia is cured, we may be able to remove the tubes.”

Ed shook his head, eyes rolling. “Go away! No tubes! No tubes!” Dr. Goldstein looked at Ed’s file. Seven years ago, Ed had checked himself into the local nursing home. When he entered the nursing home, and again three years ago, a patient advocate had helped him fill out an Advance Directive which stated Ed’s medical wishes. Ed had clearly indicated that he did not want a ventilator, a feeding tube, or drastic cardiopulmonary measures such as CPR.

Dr. Goldstein wanted to put Ed on a ventilator, but it was fairly clear Ed didn’t want one. However, without the feeding tube and ventilator Ed would certainly die, probably in a week or two. Dr. Goldstein checked again. Ed had also filled out a Durable Power of Attorney, in which he stated he wanted his younger brother Bert to make medical decisions for him in the event he was no longer able to do so for himself.

Dr. Goldstein got up and left the room. He was convinced that it was time to call Bert. It wasn’t clear to Dr. Goldstein that Ed really understood what was happening to him, and Dr. Goldstein had always felt that it was courteous to involve the entire family when possible. Dr. Goldstein called Bert and explained the entire situation.

Bert is a rather shy, 63-year-old man. Living quietly at home, Bert has Crohn’s Disease and some arterial damage, including fairly major blockages in the arteries feeding his kidneys. Bert has never married, and he doesn’t like to make decisions. Bert sat down, still holding the telephone, and sighed. Poor Ed! What should he do?

After a long pause he mumbled, “Can I think about it and let you know tomorrow?”

“No,” said Dr. Goldstein firmly. “Bert, Ed’s not doing well. He has bad pneumonia, but he may be able to get better if we give him treatment and put him on a ventilator for a while. As you know, Ed’s against being on a ventilator, but I don’t think he understands that this may only be temporary. I don’t think his infection is letting him think clearly on his own. As his representative, you can decide to put him on a ventilator, but you need to understand the risks and benefits.”

Bert hesitated. “Um. What are the risks?”

Dr. Goldstein was more comfortable answering this question. “Bert, he has pneumonia, complicated by an esophageal defect. If we don’t treat him aggressively, he will almost certainly die, probably in a few days. There is a risk that we may not be able to remove the ventilator and feeding tube after the pneumonia is treated. It depends on the condition of his esophagus.”

Bert squirmed. “OK,” he sighed. “How about if you put him on the ventilator tonight, and if I change my mind tomorrow, then you can remove it?”

“Absolutely not,” Dr. Goldstein roared. “That would be murder!”

Finally Bert agreed to drive into the hospital, see Ed, and make a decision. After he hung up, Bert decided to call his nephew Eric. Eric might know what to do.

Eric was not at home. Bert left a message: “Eric, this is Uncle Bert. Ed is in the hospital. He has pneumonia and they say he needs tubes put in. But I know he doesn’t want them. Well, I just thought you might want to know. Sorry you weren’t home.”

Later that evening, Eric played the phone message. He immediately called Bert, but Bert was gone. Eric drove to the hospital to find out what was happening. He didn’t find Bert, but he was directed to the ICU unit, where he met Dr. Goldstein. Eric shook hands with Dr. Goldstein. “I’m Eric,” he said. “I’m Ed’s nephew. Ed’s older sister is my mother. I know there are patient privacy laws you can’t break, but I’d appreciate any information you can give me. If there is anything I can do to tell my mother or help my uncles, I’d like to know about it.

Dr. Goldstein was relieved Eric had shown up. Eric seemed to be someone he could talk to who would understand the situation and help Bert realize that Ed should get treatment.

*

--> http://sciencecases.lib.buffalo.edu/cs/files/treating_ed.pdf