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