The night nurse tells me in her report that my patient for the day is in liver failure. The doctors have called for a meeting with the family to discuss code status. This means they think the patient is going to die soon. The family, however, has said that they do not want the patient, a man in his forties, to know how serious his condition is. “We’ll see about that,” I think to myself as I listen to the rest of the night nurse’s report. Apparently the doctors have gone ahead and spoken with him about his condition already anyways.
I enter his room and begin the morning assessment. I feel his pulses, listen to his lungs, “Are you in any pain?” He is not. He looks bored and nonplussed. I am suspicious. “I heard you got some bad news last night,” I say. “Yeah,” he replies in a disinterested tone. “Do you know that your liver is failing?” “Yeah, I guess.” “Do you know that you cannot live without your liver?” The doctors must have left this part out or else they spoke about it obliquely so that the patient was not able to understand. He is suddenly paying more attention to me. He begins to shake, “you mean I am going to die?” He continues to shake as I encourage him to prepare for the day’s meeting by thinking about what he would want his code status to be. I put my hand on his shoulder to calm him. Would he want everything done, or would he want to be allowed to die peacefully? Death by liver failure is one of the most agonizing deaths. The mind becomes clouded, the body fills up with fluid, and skin becomes yellow. The pain is severe and pain medicines are mostly metabolized by the liver, so the patients cannot have any medications to make them more comfortable. My patient is not a candidate for transplant. When his liver fails completely (an oversimplification of the condition), his code status could possibly save him for a week or so of agony. Past a certain point, there is no chance for recovery. The doctors would not be talking about code status if they did not think he was going to die.
“Am I going to die today?” demands the patient urgently. I try to avoid giving him a time frame, but this seems to confirm for him that he is going to die any minute. I break down and say, “More like days to weeks,” I say. We talk a little more before I leave the room.
Shortly thereafter his mother arrives with a couple of other close relatives. I did not see them go into the room. The patient points me out, “That’s the one.” He waves me into the room. His mother stands on the opposite side of the bed. I stop just inside the door. “Did you tell him he was going to die tomorrow!?” she demands indignantly. I suddenly feel like a child before an angry teacher. I feel my knees slacken and my courage deserts me. “I told him he was very sick. I explained what the doctors said.” The patient rolls his eyes. I make excuses and leave the room as quickly as possible. I tend to my other patient.
After a few minutes, I hear the mother in the hallway, “Where is the nursing supervisor!?” she demands. I hear another nurse telling her that I am right in the next room. “I don’t want Him! I want the nursing supervisor!”
“Now I understand why other nurses do not bother with this sort of thing.” I say to myself, but my courage is returning. I have not exceeded my bounds at all and I feel confident that no harm will come to me. The doctors explained it to him, but he did not understand. It is my job as his nurse to make sure he understands what he has been told. I begin to relish the thought of a fight. I search out the charge nurse and tell her my side of it first. She tells me that she has already heard about it and does not see anything wrong with what I have done. Her only question for me is about whether he had asked me for the information I gave him, or whether I had pushed it on him. This is a widely accepted unwritten code for nurses. If they do not ask, you do not tell. The basic idea is that if a patient wants to be in denial, you should not try to force them to face reality. I agree with this, but I think the principle has been taken too far. In this case, for instance, the man has no idea he is about to die even though the doctors have supposedly informed him. Would I really be a good advocate for my patient if I said nothing and watched him die? “Oh, well he did not ask me….” I did not overwhelm any denial; the patient did not have any idea how serious his condition was.
The mother talked with the charge nurse for a little and was pacified. I softened and apologized for inadvertently causing a disturbance. The doctors met with the family and backtracked on what they had said, but they did at least acknowledge that they had said it. The patient asked his sisters to stop asking the doctors questions about his illness and absorbed himself in watching sports on TV. Labs I sent showed his liver function was improving. Oh well. People should think about their own mortality from time to time anyways. The doctors continued to confirm that they had thought the situation was dire.
In the afternoon, I spoke with the patient’s sister about it all. She was a nurse, although not involved with critical care at all. She spoke of concerns that hearing a bleak assessment of his chances might depress him and cause him to give up. As if people only die because they give up. I spoke with her at some length about how horrible a death from liver failure can be. I pointed out to her that if he were to become just a little sicker than he was now; he would no longer be able to communicate with anyone. If he could say now that he wanted everything done, then the family could be peaceful that they were doing the right thing as he went through it all. If he told them that he did not want everything done, they could be confident that they had not pulled the plug on him prematurely. As I spoke, I saw light bulbs go on in the sister’s head. I could see she now saw the urgency of the situation. I could see she now understood why I had acted as I had and appreciated it. I saw she was thinking about how she could exert herself to adjust the family dynamic a bit. I am not sure how well she fared. I have no idea what happened to the patient.