Waiting for a Miracle

At a glance, Mrs. Brown did not look so bad. Something about her face seemed odd, but the breathing tube distracted from that. Her body had no open wounds or oozing punctures. It was not blown up with fluids and there was no foul smell. Everything looked normal, but the first touch told a different story.

I touched her wrist to feel her pulse. It was like touching a piece of wood. Mrs. Brown had advanced sclera-derma, a progressive disease that causes the gradual thickening of the skin. It was as if she were made of wax – frozen fingers, elbows, knees. There could not have been much blood circulation. I do not know how the tissues remained intact. I looked more closely at her face. It was as if she was wearing a mask or even as if she had been dead for a couple of days already. Her lips were dry and leathery, her cheeks flat, frozen and tight. The disease attacks the internal organs too, thickening, stiffening. Mrs. Brown could no longer breathe on her own and was therefore in the MICU for ventilator management. She was fading fast and was on IV pressors to keep her heart beating.

As I took care of her through the day, the opinions were all equivocal. She would not last long; hours to days. The family took everything in, nodding quietly. I explained the basics of the ventilator to them, letting them know the implications. Her brother listened intently, but seemed to be drawing his own conclusions inside.

As I left the hospital at the end of my shift, I met the brother again in the parking lot. “Is she getting better?” he asked. After all that had been explained to him, I was surprised at the question. I told him gently that she was still declining. “It is really not too soon to start thinking about when you might want to say enough is enough.” The brother thanked me politely and headed back into the hospital. I went home feeling the family’s strangeness was deeper than I had first thought.

The next day in group report we heard that Mrs. Brown’s condition had continued to deteriorate through the night. Her final code was expected sometime during the next shift. I requested the assignment again. As I approached her room I heard an exchange between the night nurse and the resident. “She is not oxygenating. You are not going to be able to do anything for her,” said the nurse. “But the pulse-ox is reading 98%,” protested the resident. “Listen, I can make it read whatever you want it to,” replied the nurse (he had presumably rigged it to read high so that he would not have to listen to alarms all night. You could not really get a proper pulse-ox reading on Mrs. Brown).

A little later, another resident called the family. “I really feel that all we are doing is prolonging her suffering now. Please let us stop.” I have never heard a resident be so direct, before or since, but the call ended with the resident frustrated and disturbed. “I am sorry, but we cannot do that,” was all she could get out of them. I have seen a devout catholic woman with brain cancer spend her last months in a deep coma while the family refused to withdraw care out of religious conviction, but this was something else. This Mrs. Brown’s family seemed to believe that she was going to get better somehow. I contemplated and in my mind saw the family sitting on Sunday in church as the minister went on about God’s miracles and Mrs. Brown. It is all speculation of course, but I do not have another explanation.
On rounds the doctors discussed Mrs. Brown’s predicament. There was nothing more to do. The family was not coming. When the time came to code her we would push epi and atropine to show a response, but we would not do more than that. It was so clearly hopeless; there was not much need to make a show.

Mrs. Brown must have heard them somehow. As the doctors moved on to the next patient, Mrs. Brown’s heart stopped. Maybe she was waiting for her family to show up and gave up when she heard they were not coming. They did not come after she died either. The resident called the family to give them the news. They hung up on her. A few minutes later they called me to ask about her condition. “Mrs. Brown has expired.” (CLICK). She let them down I suppose.

We tagged and bagged the body and pushed it on the stretcher through the old tunnel to the old elevator and rode up to the 11th floor - the morgue, or as we liked to call it, the MICU annex.

How to read an X-ray

I had been off of orientation for a month or two in the second MICU I had worked in. Early on in the shift my sepsis patient crashed and needed to be emergently intubated. Everything went smoothly. As the doctors wrapped up, one of the senior nurses on the unit said what I was thinking – “Aren’t you going to put in a central line? This patient needs access.” The doctors were unmoved. They wanted to get back to rounds.

Central lines are IVs with multiple ports which are placed directly into the large veins leading to the heart. They are much more reliable and secure than peripheral IVs, which can become dislodged at any moment. In a code situation it is vital to have good IV access so that any drugs, blood products, or fluids can be administered quickly and effectively. In the MICU where I started you could pretty much take for granted that any patient who had the slightest potential to become unstable would get a central line right away. In this new hospital however, there was a push to minimize their use because of the increased risk of infection that comes with insertion and maintenance of the lines.

Even taking the hospital initiative into account, I was unhappy that the doctors were not taking the need for a central line seriously. With the commotion of the intubation my patient’s blood pressure had gone up, but I had seen this before and was concerned that this would be short lived. If his blood pressure fell too low, he would need pressors. I had been trained never to infuse pressors through peripheral IVs. If the medicines leaked into the surrounding tissues at the IV site, the powerful vasoconstricting effects could cause severe damage to the pateints limb. I watched as my patient’s blood pressure slowly dropped towards dangerous lows. I needed to act now while there was still time.

I went to the doctors as they rounded on other patients. I was rebuffed again. I got lucky and caught the night attending on his way out. He stayed to put the line in. He seemed to take pleasure in refreshing his skills (usually the residents put in the lines under supervision of the fellows). The night attending was expert. Within half an hour of hitting the door, the line was in. The order for a stat chest X-ray was actually executed in short order (sometimes it takes hours for them to show up). An X-ray is necessary because the lines occasionally take a wrong turn and end up near the brain instead of the heart. Proper placement of the central line has to be verified by a physician before the line can be used. My patient’s blood pressure continued to drop.

There was an X-ray viewing room at one end of the unit. I caught an intern and urgently requested her to read the film. As we walked down the hallway towards the viewing room the intern asked me, “Do you know how to read the X-rays for verifying line placement?” Me, agitated, “Nurses don’t do that. The doctors do. Weren’t you trained to do it?” “Well, I was trained…..” Ugh. I abandoned the intern and caught a nurse practitioner. She came to read the film, but the end of the IV was all the way into the patient’s heart. She was not sure if I could use it or not. I circled back to the patient’s room and got lucky and caught the night attending again. The patient was now in need of pressors. The night attending assured me I could use the line as it was. I scrambled to get a bag of Levo mixed (ICU nurses get to do that) as the night attending went back in to the room to pull the line back a couple of centimeters.

I was feeling quite shaken by this point. In the patient’s room with the night attending I expressed my concerns. “I feel very unsafe in my practice.” He seemed to be the only one who understood the urgency of the situation. He responded by teaching me the basics of reading a placement X-ray – “If it is in the heart, you can use it for meds. If it stays there long term it may cause some damage, some erosion, but that is not an urgent thing. You can use it. It is safe."

The Levo was running now and the patient was responding to it. I did not feel very reassured. I did not want to know how to read an X-ray. That was not my job and I would only get myself into trouble if I thought it was. I wanted to be able to rely on the physicians and was not feeling very sure that I could. I reiterated my concerns. “I feel very unsafe here now.” The attending paused for just a moment and looked at me. “I know,” he said, “Imagine how I feel.”

Fight or Die

MICU rounds. A dozen or so doctors - interns, residents, fellows, pharmacists and the attending – are all in agreement that it would be better to not intubate the patient with advanced, aggressive, metastatic brain cancer. He can die now or after a couple of weeks or so of ICU hell. The resident has had some preliminary talks with the family and they are open to the option.

Just as the team gets ready to enter the patient’s room, the oncologist shows up. The resident updates him and is taken off guard as the oncologist says something to the effect of, “don’t worry, I will take care of this,” and goes alone into the room. He sits down with the family and, using the finest unintelligible jargon, explains to them that the patient has no chance for survival, but they can still give their permission to do everything. He lays it out in plain terms – they can give up if they want, or they can fight. The resident, a caring young woman who perhaps thought that she was poised to do just a tiny bit of a good deed in this dark world, watches in quiet dismay from the doorway as the family rehearses their chant of “fight, fight, fight!” Now she would get to practice her intubation skills.

From my perspective, there is nothing particularly praiseworthy about wanting to fight as death approaches. When Ted Kennedy received his cancer diagnosis, the media was full of praise for him as a fighter. In our popular culture people die when they give up fighting, but this is not really true. Everyone dies. Sometimes things can happen faster when a person gives up, but then there are plenty (really) of patients who are praying for death. Death often does not seem to be in any rush to respond.

What about accepting death as a part of life and embracing it with dignity? We cannot accommodate that in our culture. Punishment must be related to guilt. “They must have done something wrong, or else why did they die? I am a good person, so surely I will live.” This seems to be a common subtext. An ocean of resources down the drain. Nothing for the person on the street while in good health, but millions of dollars on the verge of death. No questions asked. Or is it really all about teaching and experimentation? A little bit of both maybe? Somewhere someone is getting rich. Death is starting to feel a little insecure I think though…

Too Late

“But it’s too late baby, now it’s too late…” sings Carly Simon from the portable CD player in Mrs. Kent’s room. You might think you are in California as John, her partner of three years or so, tells you about how she has taught him to love nature, to garden, to compost everything that can be composted. He seems to love her, but he does not appear to be feeling the anguish and grief that I have seen when spouses of many years face the loss of their partners. It is more like he is a stranger trying to do a good deed for someone by looking after them- at least in that regard.

Mrs. Kent’s cancer was in remission, but the doctors recommended an extra round of chemo and radiation to try to extend the period of remission. It may have made sense statistically, but the treatments fried her lungs and she was now on her deathbed. You try talking about it with John and he bristles. Immediately you see that you are not the first nurse who has tried this dance. “I am not trying to take your hope away,” you say as you think about how that is exactly what you are trying to do. Sometimes hope is the meanest, cruelest feeling in the world.

There is a copy of a research study in Mrs. Kent’s chart that talks about the type of treatment reaction she is having. If it occurs at all, mortality is 90%. If the patient has to go on a ventilator, death is virtually certain. One of the residents has gone so far as to present John with a copy of the paper. Mrs. Kent is not just on the vent, the pressure settings have been turned up so high that air is seeping out into her chest. You can feel pockets of air under her skin around her collar bones. John talks about how much more comfortable she is now compared to when she first came in. He thinks she is making progress. You try to gently educate him about ventilators. He listens. It is not that he is unwilling to hear. The oncologist has recommended giving her two more weeks to turn a corner. He tells you about his talks with Mrs. Kent before all of this. If there was no hope of recovery, she had not wanted to be maintained artificially. If John’s connection with Mrs. Kent was deeper, would he feel more conflicted? Would he push harder for better answers?

The Medicine team is clearly uncomfortable with what the oncologist is saying, but there are invisible lines that don’t get crossed. Giving John the study paper was definitely pushing the envelope. Where is this oncologist coming from anyways? Is he trying to manipulate survival statistics? Where did the two weeks come from? It does not seem to be based on Mrs. Kent’s condition. Oncologists, as a rule, do not think of ‘hope’ as a dirty word; quite the opposite. Is it possible that this guy somehow imagines that he is doing a good deed?

When the influence of the sedation lightens, Mrs. Kent reaches out in panic and distress. She is clearly disoriented, but she is seeking human connection. Comfort. She might have a lot to say if she could talk, but she will never talk again. All there is to do is turn up the drips. Ah death! The sea of silence!

Care was withdrawn on Mrs. Kent after a week or so. I was off that day.

Juice please

“Is there anything I can do for you Mrs. Smith?” I say as I finish my morning assessment. “Can I have something to eat? I have not eaten in three days.” Mrs. Smith is calm and polite, but I hear a building distress in her voice. It is not unusual for a patient in the Surgical ICU (SICU) to be NPO (nothing by mouth) for a few days, particularly if a surgery has been performed on any part of the GI tract. Mrs. Smith’s procedure two days ago had been elsewhere though. I went through her orders. No diet. All patients are kept NPO for twelve hours or so before procedures. Anesthesia sometimes causes vomiting and keeping the stomach empty minimizes the risk of choking. Did they just forget to restart Mrs. Smith’s diet after the procedure? I cannot think of any other explanation, but I have just floated to the SICU a few times before this and there is a lot I still do not know. I turn to MK.

MK is one of the surgical residents. She is a rare one and well loved, especially by the nurses. One of the charge nurses, a young man, first introduced her to me saying shyly, “This is MK. We do not like her a lot or anything like that.” What is uncommon about MK is her mood. She does not use her position to elevate herself above others. She is not here to fix it all, just to do whatever she can to make it better. She is cool calm and collected and she brings her full attention and skills to her work when it is time. She does not ask for any breaks. As a floater, I particularly appreciated her openness. When the unit staff does not know you, it is often hard to get anything done. Even the techs will not listen to you, what to speak of the doctors.

MK listens and does not give the standard “We will address this on rounds,” reply. She goes directly to the fellow. “Is there any reason why Mrs. Smith needs to be NPO, or did we just forget to give her a diet?” “She can eat,” is the answer.

The SICU does not have much around for the patients to eat and it will take a while for something to come from the kitchen even with a request for a late tray. I scrounge some juice and give Mrs. Smith the choice between apple and orange. She chooses apple, happy that her fast will soon be ended. Some patients would be furious at this point, but Mrs. Smith does not seem to have any interest in going that way.

I get a cup, a lid, a straw and some ice and empty two of the small plastic containers of juice into it. When I return to the room, Mrs. Smith’s surgeon is there speaking with her. “Here is your apple juice Mrs. Smith.” The surgeon stops me in my tracks, “She does not like apple juice.” “She said that she wanted it.” “She does not like it. It is too acidic.” I look at Mrs. Smith. She waves me over. Her gesture says, “Its okay, just give me the juice!” “Don’t you remember telling me you do not like apple juice?” booms the surgeon. Mrs. Smith does not engage him. She probably did say it at one point, days ago maybe. He continues to block me. “She has been NPO for three days,” I protest. “I know,” he answers proudly, missing the point entirely, “I made her NPO.” (Me big doctor, You little nurse.)

Okay. So this little nurse knows that the big doctors never hang around for long. Mrs. Smith only had to wait another minute for her juice.