I was in the last semester of nursing school and I was interning on the MICU where I would work after graduation. During the first or second week I observed a code. It was a patient with sepsis. Her blood was too acidic and her heart kept stopping. The team would inject bicarb (basic) and perform chest compressions and her heart would resume beating for a while. A few minutes later it would stop again. Her condition was irreversible.
Experienced nurses were running the code. “Will someone please call the family and tell them it is time to let her go to Jesus!,” one called out. Another had the job of injecting the bicarb – “Can’t….Stop…” He said as he pushed the amp into the patient during the third round. He was registering his distaste.
My preceptor had another idea. She went and got the new chest compression machine the unit was supposed to be trialing. With a little persistence, she overcame the objections of the other nurses. They complained about the interruption that would be necessary to place the machine under the patient.
After the hard board was under the patient and the 10 inch wide nylon strap was secured over her chest, the machine was turned on. On the first try, it did not engage. Then, like something out of Robocop, it came to life. First it moved the nylon strap in and out, measuring the appropriate length, then…. WHAM! WHAM! WHAM! WHAM! The strap tightened and slammed down on the patient’s chest delivering compressions. The compressions were so violent that the patient’s already swollen belly jumped a foot upwards with each contraction. Her body looked like so much bread dough in a kneading machine. It was quite horrible to watch. I asked my preceptor about it – this had to be damaging her body. My preceptor replied that studies had shown that regular chest compressions are not very effective in circulating blood throughout the body. The compressions delivered by the machine would be much more efficient. Ribs are often broken during CPR, even when it is done by hand. The machine might save lives. We had to learn how to use it and this was a good case to try it out on (because we knew she was not going to make it in any case – no harm if something goes wrong).
The other nurses seemed as unhappy as I was with the trial and I never did see the damn machine again. I made sure to give a dirty look to whoever so much as mentioned using it. No sanctuary for the dying.
Monday, September 29, 2008
Thursday, September 25, 2008
Outside Jessica's Room
Outside Jessica’s room the doctors were making morning rounds. Her liver enzymes were improving. She was stable. Her ammonia levels were down. The attending asked the intern for his recommendation. “Send her to the floor.” The attending, a mild, gentle man, did not agree. In a matter of fact way he explained his thinking. Jessica was young and unlike the rest of the patients in the unit, she could actually get better. If we sent her out now and by some chance something went wrong, how would they be able to look back and justify the rush to get her out of the ICU. She should stay one more day for observation.
I had been a nurse for less than a year, but I had already learned that most of the MICU patients did not get better. Quick deaths were simply traded for long, extended deaths (I call them MICU sunsets). Along the way the patients are tortured endlessly with knives and needles and strong drugs. For every one patient you might be able to say was helped by ICU treatment, you can be sure a hundred or more have died miserable deaths. This is how the students learn, how science advances, how the industry makes its money. I had guessed this dirty secret, but I was still surprised to hear the words come from the attending’s mouth. There was no shame, no self-consciousness, no hesitation as he spoke about how the rest of the patients were being treated just for practice and that this was the real opportunity to help someone. “How do people feel this is okay?” I wondered to myself.
It is all so complicated. Try to explain it to a patient’s family and they will hate you. They want to get everything that is available. If any treatment is withheld, they consider it neglect and abuse. The less educated the family, the worse it gets.
I have heard that more than 90% of money spent on healthcare during the average person’s life is spent during the last month of life. I have no reason to think it is otherwise based on what I have witnessed. Such a wasteful society. I tell you what; give me the million bucks now and let me die on the street when the time comes. I won’t be any worse off at the end and I promise you I will find something better to do with the money.
I had been a nurse for less than a year, but I had already learned that most of the MICU patients did not get better. Quick deaths were simply traded for long, extended deaths (I call them MICU sunsets). Along the way the patients are tortured endlessly with knives and needles and strong drugs. For every one patient you might be able to say was helped by ICU treatment, you can be sure a hundred or more have died miserable deaths. This is how the students learn, how science advances, how the industry makes its money. I had guessed this dirty secret, but I was still surprised to hear the words come from the attending’s mouth. There was no shame, no self-consciousness, no hesitation as he spoke about how the rest of the patients were being treated just for practice and that this was the real opportunity to help someone. “How do people feel this is okay?” I wondered to myself.
It is all so complicated. Try to explain it to a patient’s family and they will hate you. They want to get everything that is available. If any treatment is withheld, they consider it neglect and abuse. The less educated the family, the worse it gets.
I have heard that more than 90% of money spent on healthcare during the average person’s life is spent during the last month of life. I have no reason to think it is otherwise based on what I have witnessed. Such a wasteful society. I tell you what; give me the million bucks now and let me die on the street when the time comes. I won’t be any worse off at the end and I promise you I will find something better to do with the money.
Inside Jessica's Room
Jessica and her mother Louise were southern ladies. Jessica, at 24, was the patient. She had suddenly developed severe liver failure and had come to the MICU to be evaluated for a liver transplant. As Jessica lay in bed moaning, her mind clouded from high ammonia levels, her mother struggled to get her mind around it all. To everyone’s relief, Jessica began to get better spontaneously. Over the course of the day her consciousness became clearer. She began to argue with her mother. “There is a toilet in the room, it is right there.” “Honey, there is no toilet in this room.” The toilet was under the sink.
The phone rang in the room. Louise answered. She became upset as she listened. The call ended quickly. “John’s dead. They found him in the house. Oh and I fussed at him last night!” John was her boyfriend. Louise yelled at Jessica as they both began to cry, “Don’t you think money is going to make you happy! Don’t you ever think money is going to make you happy!” John had been wealthy, but troubled and unhappy. He had struggled with alcohol. Louise got on the phone and called her ex-husband (I think it must have been). She told him he needed to come there, told him about John and then began to ramble. She was losing it. She handed the phone to Jessica who used what strength she had to sit up in bed and take the phone. “Momma’s all tore up.” She told whoever was on the other end of the line.
John’s body came to the hospital morgue to be autopsied since his death was unexplained. John’s doctor called the hospital to talk with Jessica’s doctors. He was concerned about foul play. Perhaps they had both been poisoned somehow. The ICU doctors dismissed it. Louise started to think about it, but Jessica had not seen John in weeks. It did not seem possible that the two illnesses could be connected.
Louise wanted to see John’s body and she asked me to help her. I made inquiries but met with resistance. What was the point? Why did she want to do this? I made phone calls and in the end arranged for the hospital Chaplin to take her to the morgue where she was met by the doctor who performed the autopsies. He presented her with a Polaroid picture of John’s body. She came back satisfied. She thanked me for understanding her need.
By the next day Jessica was well on her way to a full recovery.
The phone rang in the room. Louise answered. She became upset as she listened. The call ended quickly. “John’s dead. They found him in the house. Oh and I fussed at him last night!” John was her boyfriend. Louise yelled at Jessica as they both began to cry, “Don’t you think money is going to make you happy! Don’t you ever think money is going to make you happy!” John had been wealthy, but troubled and unhappy. He had struggled with alcohol. Louise got on the phone and called her ex-husband (I think it must have been). She told him he needed to come there, told him about John and then began to ramble. She was losing it. She handed the phone to Jessica who used what strength she had to sit up in bed and take the phone. “Momma’s all tore up.” She told whoever was on the other end of the line.
John’s body came to the hospital morgue to be autopsied since his death was unexplained. John’s doctor called the hospital to talk with Jessica’s doctors. He was concerned about foul play. Perhaps they had both been poisoned somehow. The ICU doctors dismissed it. Louise started to think about it, but Jessica had not seen John in weeks. It did not seem possible that the two illnesses could be connected.
Louise wanted to see John’s body and she asked me to help her. I made inquiries but met with resistance. What was the point? Why did she want to do this? I made phone calls and in the end arranged for the hospital Chaplin to take her to the morgue where she was met by the doctor who performed the autopsies. He presented her with a Polaroid picture of John’s body. She came back satisfied. She thanked me for understanding her need.
By the next day Jessica was well on her way to a full recovery.
Saturday, September 20, 2008
Orientation
“This is an experimental hospital, so you are bound to see a lot of things that you feel are unethical. If you want to practice here, you will have to keep those feelings to yourself.”
It is my first day of orientation on a MICU in another university hospital where I will be working. My preceptor, Jim, has worked here for 15 years. It is hard to imagine that he could be so direct with all of his orientees. Perhaps he has sized me up quickly. He adds that once I have been around for a while and established my name, I will be able to intervene from time to time and say enough is enough. He does this himself and clearly feels proud of it and that it is his role. That is a good sign at least, but out the window goes any hope that this hospital is going to be different from the others I have worked in. But I knew that already, right?
“They are proud of being an experimental hospital. They just like to use the word ‘innovative.’ That means they try a lot of things on patients who have no chance of making it. If something works, they broadcast it. If something does not, they bury it.” Trial and error being what it is, I expect the latter happens much more than the former. Human experimentation anyone? These people are on the verge of death anyways, so how much harm can you really do to them. It can get to be an “anything goes” scenario if you play it right. It is always open season on the dying. They are defenseless. Even their families do not protest. Does everyone feel comfortable with this? This is where the miracles of modern medicine come from right?
Jim says that he sometimes flatly refuses to assist with experimental procedures and blocks them when he thinks things have gone too far. MICUs tend to get a lot of hopeless cases. Jim talks about how it is a good place to practice code skills. Knowing the end result will not be changed takes the stress out of it all. “We have fun with the codes. Well not fun really, but we take a few minutes at the end so that the new nurses can practice their chest compressions and stuff.” I decline the practice opportunity in advance. I do not really need it. I know what he means about codes being fun. They are exciting and they provide an opportunity to work closely with coworkers in a pleasing way. “It is a teaching hospital. This is what it means. Everyone needs to learn how to do these things. We try to stop it before it goes too far.”
I remember a story one of my nursing instructors told one day in lecture. She had gone to check on a student who had been placed in the ER for the day. She had peeked around a curtain to find her student alone, straddling a recently deceased patient, happily practicing chest compressions. Seeing her teacher, the student looked up, smiled and waved, “Oh, hi Professor Calloway.” Then she had gone back to her practicing. My instructor had stumbled away, thinking about how strange her life had become. I appreciate more and more how she shared her experiences like this with us.
It is my first day of orientation on a MICU in another university hospital where I will be working. My preceptor, Jim, has worked here for 15 years. It is hard to imagine that he could be so direct with all of his orientees. Perhaps he has sized me up quickly. He adds that once I have been around for a while and established my name, I will be able to intervene from time to time and say enough is enough. He does this himself and clearly feels proud of it and that it is his role. That is a good sign at least, but out the window goes any hope that this hospital is going to be different from the others I have worked in. But I knew that already, right?
“They are proud of being an experimental hospital. They just like to use the word ‘innovative.’ That means they try a lot of things on patients who have no chance of making it. If something works, they broadcast it. If something does not, they bury it.” Trial and error being what it is, I expect the latter happens much more than the former. Human experimentation anyone? These people are on the verge of death anyways, so how much harm can you really do to them. It can get to be an “anything goes” scenario if you play it right. It is always open season on the dying. They are defenseless. Even their families do not protest. Does everyone feel comfortable with this? This is where the miracles of modern medicine come from right?
Jim says that he sometimes flatly refuses to assist with experimental procedures and blocks them when he thinks things have gone too far. MICUs tend to get a lot of hopeless cases. Jim talks about how it is a good place to practice code skills. Knowing the end result will not be changed takes the stress out of it all. “We have fun with the codes. Well not fun really, but we take a few minutes at the end so that the new nurses can practice their chest compressions and stuff.” I decline the practice opportunity in advance. I do not really need it. I know what he means about codes being fun. They are exciting and they provide an opportunity to work closely with coworkers in a pleasing way. “It is a teaching hospital. This is what it means. Everyone needs to learn how to do these things. We try to stop it before it goes too far.”
I remember a story one of my nursing instructors told one day in lecture. She had gone to check on a student who had been placed in the ER for the day. She had peeked around a curtain to find her student alone, straddling a recently deceased patient, happily practicing chest compressions. Seeing her teacher, the student looked up, smiled and waved, “Oh, hi Professor Calloway.” Then she had gone back to her practicing. My instructor had stumbled away, thinking about how strange her life had become. I appreciate more and more how she shared her experiences like this with us.
Tuesday, September 16, 2008
The Good Fight
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.
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.
Saturday, September 13, 2008
Death by Cystic Fibrosis
I had been caring for 19 year old Ms. Samson for several days now and she was not getting better. On the first day she had been able to remove the Bipap mask long enough to eat her meals. Now we removed the mask only for her to take pills and even from this short pause her blood oxygen levels would drop to the low 80’s and return to the minimally acceptable 90’s very slowly after several minutes.
Ms. Samson’s room in the medicine intensive care unit (MICU) showed signs of a family accustomed to hospital stays. Bags of clothes, half full cups of sodas, half eaten sandwiches and untouched cups of Jello (saved just in case they might be wanted), open purses and extra sheets and blankets lay about the more than usually cluttered tables, vinyl chairs and floor. The lights were dim and the TV, at low volume, was turned to a morning show. Ms. Samson’s mother lay asleep on an armchair, wrapped in a couple of white hospital blankets. She did not stir as I performed my nursing assessment and administered the medications. I left the curtains by the entrance to the room drawn and slid the glass door closed as I exited to let them rest.
When the doctors rounded and discussed Ms. Samson’s case my suspicions were confirmed. Ms Samson was on the edge of requiring intubation, (being placed on mechanical ventilation through a plastic tube which is inserted directly into the lungs). Since Ms. Samson had Cystic Fibrosis this would be a death sentence. The thick sticky mucous that coated her lungs would be pressed further and further into her airways and, although she would appear better at first, after a few weeks to a few months of gradually increasing the ventilator pressures there would be nothing more to be done and she would die. In my short nursing career I had already witnessed this a few times. The hospital where I was working specialized in treating Cystic Fibrosis and since those suffering from the genetic disorder rarely live to their twenties and almost never to their thirties, we in the MICU had the unhappy task of caring for the otherwise normal teenagers and young adults as they succumbed.
The attending physician was equivocal – if she was intubated she would never be extubated (removed from mechanical ventilation). An intern raised the possibility of a lung transplant but the attending explained that the most important predictor for success in organ transplantation is the patient’s ability to strictly adhere to a complicated medical regimen. Since Ms. Samson had a history of noncompliance with medical regimens, she was not a candidate for a lung transplant. The doctors and pharmacists discussed which antibiotics would have the best hope of working, made a plan, wrote some orders and moved on to the next patient.
After the doctors had gone I entered Ms. Samson’s room, her mother was awake now, sitting quietly in the chair staring at the wall. I squatted by her side. “Mrs. Samson,” I said gently, “do you understand how serious your daughter’s condition is right now?” “I think so, kind of,” she replied seeming glad that I was asking, “but tell me.” I told her that her daughter would soon be intubated and that the doctors did not think she would ever be able to get off the vent again. She replied, calmly, that she had not realized that. I explained to her that her daughter would die slowly over weeks or months and I told her that there was the option of deciding not to put her on a ventilator.
I know what I think I would want for myself. I have seen what these patients go through and I do not feel it is very merciful to just keep them alive in miserable conditions for as long as possible. I encouraged Mrs. Samson’s mother to think about the choice that needed to be made. What would her daughter want?
She went to her daughter’s bedside. “Do you want help with breathing?” Her daughter nodded yes, but the mother was still uncomfortable. “I do not think she realizes she would never get off of the vent. I do not think she would want to live like that.” Ms. Samson’s tattoos and piercings seemed to indicate a free spirit. Maybe it would be better just to let her go.
What must it be like to know that you will not make it to age 30? Ms. Samson had missed her 16th birthday party and her high school graduation – she had been in the hospital with pneumonia both times. She had discussed with her therapist that she was tired of being controlled by her disease and so she had delayed going to the hospital this time with hopes of being able to celebrate 19 years of life. The therapist did not visit her in the hospital. “Where is that therapist now huh?” I thought to myself, unsure if I had a right to the feelings of indignation I was experiencing.
When a mother comes to know that she is going to have to make a life and death decision about her daughter, one day is not a whole lot of time to do it in. I brought the doctors to talk with her. They confirmed the situation. I helped Mrs. Samson interview them. I introduced her to the family of another cystic fibrosis patient who was also on the unit at the time. This girl was 15 years old and had already had a lung transplant. The transplant had gone bad, and she was in the MICU on a ventilator, too sick to get another transplant, wasting away. Her parents vainly clung to the hope that she would recover enough to get the transplant. They coaxed her and prodded her to walk up and down the hallway once a day. During the journey of about 50 paces all could see her emaciation. Her knees were twice as big around as her thighs. The pride of any anorexic would be crushed. “All we are doing is rearranging deck chairs on the Titanic!,” complained one of the residents referring to her care.
Mrs. Samson looked at the girl and talked with her family. The girl seemed comfortable with her head propped up on a pillow. She looked at you when you came into the room. It was a good day for her. I worried a little that Mrs. Samson might get a too rosy impression of her life, but she came back from the room shaking her head. “They seem happy with her life, but I do not know. She is so drugged out. I do not know what kind of life that is.”
At the end of the day, Mrs. Samson was still undecided, but was leaning towards not intubating. She had talked with the doctors, and they were aware of and seemed to agree with her sentiment. I let the night nurse know where things stood and left for the night.
When I returned the next day, the room was empty. The Samsons were gone. I asked what had happened.
A blood gas had been taken at the beginning of the night shift and it came back critically acidic. The nurse had informed Mrs. Samson that the time to make the decision had come. Mrs. Samson left to think and smoke a cigarette. If it had been me, I would have told her that there was not time for that, but the night nurse apparently did not feel that was her job. While her mother was out, Ms Samson began to code. The doctors, not wanting to go against the mother’s wishes, tried to buy time by ventilating Ms. Samson by hand with an ambu bag. She vomited and was choking on her vomit when her mother returned. “What is all this! I don’t want any of this!” exclaimed Mrs. Samson. The resuscitation was promptly ended and Ms. Samson’s heart stopped almost immediately. Mrs. Samson had then broken down.
The body had stayed in the room for longer than usual. The 17 year old sister, who also had cystic fibrosis and had avoided visiting her older sister, came to offer last respects. The night nurses criticized Mrs. Samson for her smoke break. “What kind of mother with a daughter who has cystic fibrosis doesn’t talk with her about intubation and her wishes?” In younger days I would have felt outrage. Why had these nurses just stood by and watched when they should have stopped Mrs. Samson and told her what they knew? But I remained peaceful with only some sadness. One has to realize what cannot be changed.
What would Mrs. Samson say to me if I met her on the street today? Would she thank me for helping her to spare her daughter from pain and suffering? Or, would she tell me that any moment of her daughter’s life was precious and that she would have wanted to give her that time ventilator or not? I do not know. When I die, perhaps there will be someone there who can tell me whether or not I did the right thing by Ms. Samson and her family.
Ms. Samson’s room in the medicine intensive care unit (MICU) showed signs of a family accustomed to hospital stays. Bags of clothes, half full cups of sodas, half eaten sandwiches and untouched cups of Jello (saved just in case they might be wanted), open purses and extra sheets and blankets lay about the more than usually cluttered tables, vinyl chairs and floor. The lights were dim and the TV, at low volume, was turned to a morning show. Ms. Samson’s mother lay asleep on an armchair, wrapped in a couple of white hospital blankets. She did not stir as I performed my nursing assessment and administered the medications. I left the curtains by the entrance to the room drawn and slid the glass door closed as I exited to let them rest.
When the doctors rounded and discussed Ms. Samson’s case my suspicions were confirmed. Ms Samson was on the edge of requiring intubation, (being placed on mechanical ventilation through a plastic tube which is inserted directly into the lungs). Since Ms. Samson had Cystic Fibrosis this would be a death sentence. The thick sticky mucous that coated her lungs would be pressed further and further into her airways and, although she would appear better at first, after a few weeks to a few months of gradually increasing the ventilator pressures there would be nothing more to be done and she would die. In my short nursing career I had already witnessed this a few times. The hospital where I was working specialized in treating Cystic Fibrosis and since those suffering from the genetic disorder rarely live to their twenties and almost never to their thirties, we in the MICU had the unhappy task of caring for the otherwise normal teenagers and young adults as they succumbed.
The attending physician was equivocal – if she was intubated she would never be extubated (removed from mechanical ventilation). An intern raised the possibility of a lung transplant but the attending explained that the most important predictor for success in organ transplantation is the patient’s ability to strictly adhere to a complicated medical regimen. Since Ms. Samson had a history of noncompliance with medical regimens, she was not a candidate for a lung transplant. The doctors and pharmacists discussed which antibiotics would have the best hope of working, made a plan, wrote some orders and moved on to the next patient.
After the doctors had gone I entered Ms. Samson’s room, her mother was awake now, sitting quietly in the chair staring at the wall. I squatted by her side. “Mrs. Samson,” I said gently, “do you understand how serious your daughter’s condition is right now?” “I think so, kind of,” she replied seeming glad that I was asking, “but tell me.” I told her that her daughter would soon be intubated and that the doctors did not think she would ever be able to get off the vent again. She replied, calmly, that she had not realized that. I explained to her that her daughter would die slowly over weeks or months and I told her that there was the option of deciding not to put her on a ventilator.
I know what I think I would want for myself. I have seen what these patients go through and I do not feel it is very merciful to just keep them alive in miserable conditions for as long as possible. I encouraged Mrs. Samson’s mother to think about the choice that needed to be made. What would her daughter want?
She went to her daughter’s bedside. “Do you want help with breathing?” Her daughter nodded yes, but the mother was still uncomfortable. “I do not think she realizes she would never get off of the vent. I do not think she would want to live like that.” Ms. Samson’s tattoos and piercings seemed to indicate a free spirit. Maybe it would be better just to let her go.
What must it be like to know that you will not make it to age 30? Ms. Samson had missed her 16th birthday party and her high school graduation – she had been in the hospital with pneumonia both times. She had discussed with her therapist that she was tired of being controlled by her disease and so she had delayed going to the hospital this time with hopes of being able to celebrate 19 years of life. The therapist did not visit her in the hospital. “Where is that therapist now huh?” I thought to myself, unsure if I had a right to the feelings of indignation I was experiencing.
When a mother comes to know that she is going to have to make a life and death decision about her daughter, one day is not a whole lot of time to do it in. I brought the doctors to talk with her. They confirmed the situation. I helped Mrs. Samson interview them. I introduced her to the family of another cystic fibrosis patient who was also on the unit at the time. This girl was 15 years old and had already had a lung transplant. The transplant had gone bad, and she was in the MICU on a ventilator, too sick to get another transplant, wasting away. Her parents vainly clung to the hope that she would recover enough to get the transplant. They coaxed her and prodded her to walk up and down the hallway once a day. During the journey of about 50 paces all could see her emaciation. Her knees were twice as big around as her thighs. The pride of any anorexic would be crushed. “All we are doing is rearranging deck chairs on the Titanic!,” complained one of the residents referring to her care.
Mrs. Samson looked at the girl and talked with her family. The girl seemed comfortable with her head propped up on a pillow. She looked at you when you came into the room. It was a good day for her. I worried a little that Mrs. Samson might get a too rosy impression of her life, but she came back from the room shaking her head. “They seem happy with her life, but I do not know. She is so drugged out. I do not know what kind of life that is.”
At the end of the day, Mrs. Samson was still undecided, but was leaning towards not intubating. She had talked with the doctors, and they were aware of and seemed to agree with her sentiment. I let the night nurse know where things stood and left for the night.
When I returned the next day, the room was empty. The Samsons were gone. I asked what had happened.
A blood gas had been taken at the beginning of the night shift and it came back critically acidic. The nurse had informed Mrs. Samson that the time to make the decision had come. Mrs. Samson left to think and smoke a cigarette. If it had been me, I would have told her that there was not time for that, but the night nurse apparently did not feel that was her job. While her mother was out, Ms Samson began to code. The doctors, not wanting to go against the mother’s wishes, tried to buy time by ventilating Ms. Samson by hand with an ambu bag. She vomited and was choking on her vomit when her mother returned. “What is all this! I don’t want any of this!” exclaimed Mrs. Samson. The resuscitation was promptly ended and Ms. Samson’s heart stopped almost immediately. Mrs. Samson had then broken down.
The body had stayed in the room for longer than usual. The 17 year old sister, who also had cystic fibrosis and had avoided visiting her older sister, came to offer last respects. The night nurses criticized Mrs. Samson for her smoke break. “What kind of mother with a daughter who has cystic fibrosis doesn’t talk with her about intubation and her wishes?” In younger days I would have felt outrage. Why had these nurses just stood by and watched when they should have stopped Mrs. Samson and told her what they knew? But I remained peaceful with only some sadness. One has to realize what cannot be changed.
What would Mrs. Samson say to me if I met her on the street today? Would she thank me for helping her to spare her daughter from pain and suffering? Or, would she tell me that any moment of her daughter’s life was precious and that she would have wanted to give her that time ventilator or not? I do not know. When I die, perhaps there will be someone there who can tell me whether or not I did the right thing by Ms. Samson and her family.
Missing a Lung
This is another early essay:
There is no training in nursing school that addresses how to go about giving information about a patient’s condition to a patient or their families, or about what they need to know or should know and what they should not. Neither was there, for me at least, anything in my hospital orientation that gave any guidance on the matter. For me personally, this is good because I have strong opinions about it and the absence of a defined role gives me a lot of discretion to act according to my own sentiments and intuitions. It gives me an opportunity for personal expression and allows me to help my patients and their families in a very meaningful way in spite of physical conditions that are often insoluble. I feel very strongly that patients and their families should be as aware as possible of their situations and should have all of the information necessary to make all important decisions. This becomes even more important, in my estimation, when death is imminent.
There is no training in nursing school that addresses how to go about giving information about a patient’s condition to a patient or their families, or about what they need to know or should know and what they should not. Neither was there, for me at least, anything in my hospital orientation that gave any guidance on the matter. For me personally, this is good because I have strong opinions about it and the absence of a defined role gives me a lot of discretion to act according to my own sentiments and intuitions. It gives me an opportunity for personal expression and allows me to help my patients and their families in a very meaningful way in spite of physical conditions that are often insoluble. I feel very strongly that patients and their families should be as aware as possible of their situations and should have all of the information necessary to make all important decisions. This becomes even more important, in my estimation, when death is imminent.
There are, however, other points of view and for whatever the reason it is often found that patients and their families are not given information promptly and in such a way that it enables them to make the big decisions with their eyes open.
The story of a not atypical workday illustrates: I arrive on the floor of the MICU at 7:00am to take report on my two patients for the day. The night nurse tells me about my first patient, he is suffering from pneumonia and has already had his entire right lung removed because of cancer. I look up from my note sheet to check the monitor and see the patent’s sats are in the mid 80’s. Without waiting to hear more I get up and go into the patient’s room to turn up the oxygen on the patient’s face mask. As I get closer to the flow meter the night nurse calls in “It’s already at 100%.” The night nurse is calm and obviously aware of the situation, so I come back out of the room to finish report. The night nurse explains that he has spent the night trying to keep the patient calm and encouraging him to take slow deep breaths. In this way he has kept the patient off of mechanical ventilation through the night, but the patient has started to slip more as the morning has come. The night nurse, who has years more experience than I, emphasizes the patient’s vulnerability due to only having the left lung (the left side is smaller because of the heart). He summarizes saying, “If he gets tubed (placed on a ventilator) he’s toast.” Then he adds that the family does not realize what is happening and expects him to be home by the end of the week.
There is not much time. I first go to the patient to try to calm him and encourage him to breathe deeply, but he is barely conscious and gasping for breath. All he can do is nod and his sats are not rising above 86%. The patient’s son is in the room. I find the fellow and ask him if the patient’s prognosis would make it appropriate to refrain from intubation and to allow the patient to expire naturally. The fellow answers in the affirmative and his tone encourages me to talk to the family. I tell the son as gently as possible that I have heard that his father has almost no chance of surviving intubation and that the time to make a decision which could spare him a lingering death with a plastic tube shoved down his throat is now. The son replies nervously that he cannot make that decision without his mother and she has just gone to the cafeteria. I encourage him to bring her. He leaves quickly.
The patient’s sats are now in the low 80’s. There is no question of calming him down now, he just cannot breathe. There is no room to delay. I find the resident and tell her about the patient’s current status. She comes directly to the room, looks at the patient and the monitor and calls for anesthesia to be paged for an intubation. I hustle to bring supplies and prepare the patient. By the time the patient’s wife returns with her son, two anesthesiologists are setting up shop, the respiratory therapist has brought the ventilator and the resident, who is standing at the bedside simply tells the patient’s wife that the patient requires help breathing and that he is going to be placed on a ventilator.
Intubation is a violent process. Families are generally asked to step out. Even if they are not asked, they always leave. A sedative is administered followed by a paralytic that leaves the patient unable to resist the impending violation. The paralytic also renders the patient entirely unable to breathe and a mask with an ambu-bag is used to give breaths until the ventilator is in place. When the patient is judged to be best able to tolerate a period without air, the mask is removed and a metal blade with a light on the end is inserted into the throat. The doctor stands behind the patient’s head and lifts up on the blade to visualize the patient’s vocal cords. When he sees them he takes the endotracheal tube (ET tube), which has a metal rod inside to make it rigid for insertion, and aims for the trachea. If all goes well (it is not uncommon for several attempts to be necessary), the tube is placed, the rod removed, the balloon at the end is inflated to make a seal, the Ambu-bag is attached directly to the tube, a carbon dioxide indicator is used to verify that the tube is in the lungs and finally the ventilator is attached and the machine begins to give breaths. The process is always somewhat intense for all involved, and when the patient’s oxygen levels are already low to begin with there are bound to be some urgent exchanges.
As I come out of the room I see that the patient’s wife and son have stayed nearby. Having heard the process going on the wife is disturbed, worried and crying. She glares at me, “He is going to be fine.” her eyes say, “why are you making us worry like this?”
I do not remember speaking with them for the rest of my twelve hour shift. I had another intensive care patient to look after also. I probably tried to say something encouraging like “I hope everything will be alright,” but I do not remember. A week later I heard the doctors explaining to the wife that there was nothing more to do. The ventilator was turned off and the patient died shortly thereafter.
Tuesday, September 9, 2008
Not for TV
I have not had time to write recently, so I am posting one of my earlier essays. I hope to get back to my regular posting in a week or so.
Not for TV
When I get to work in the morning I swipe my badge to enter the unit I am working on. I am greeted by the SNAP!...SNAP! of locks unlatching on the entrance doors. This reminds me that I work in a private place. In one sense there is no privacy for an ICU patient. There are glass doors on all of the rooms and curtains are generally kept open. The patient’s vital signs are displayed on various monitors strategically placed around the unit. The patient is meant to be under observation, or at least observable, at all times. Everything is very public in this way, but at the same time the ICU environment is emphatically not open to the general public. In three years my wife came twice to see where I was working. She would walk quickly around the unit casting a glance or two at the patient’s rooms as she passed. It is not a place where a visitor feels comfortable to sit and observe. My brother is something of a technology buff and amateur inventor. He expressed an interest in observing medical devices in action, but this is not possible. My brother is not allowed to watch me work.
There will never be any unsupervised TV cameras in an ICU. It would be a huge violation of privacy. Even regular cameras are forbidden. I have seen few things agitate nurse managers more than patient family members taking pictures of their relatives. Even talking on cell phones is against the rules and is strongly discouraged. The rationale for this is that the patient’s monitors can be affected by the phone signals, but those who know technology will tell you that this idea is false. Nurses themselves often use their own phones in empty rooms or hallways, but they are more likely to ask a family member to turn off a cell phone than to tell them to wear gloves in an isolation room. This is not limited to one hospital. As far as I am aware it is a standard policy in all hospitals. The ICU environment simply resists the outflow of information.
I am not a watcher of hospital TV shows, but I am often struck by the incongruity between the reality of the ICU environment and its public portrayal. It is not that the patient’s situations or the devices and machines are outside of the public consciousness, it is that the flow of patient care and the mood in which that care is delivered is entirely different.
An example illustrates: Shortly after I first started working in the MICU I was sitting in group report. The charge nurse from the night shift was going through the routine of giving brief updates on the patients in the unit and their conditions. She came to a particular patient and paused in the middle of the summary. She smiled slightly, relishing the moment and what was to come. “And,” she said, “A maggot crawled out of his nose.” I suddenly felt as if I were in 6th grade. Ten nurses sitting around the table let out a chorus of moans and giggles. Tongues stuck out, lips curled, everyone laughed. It was a joyful moment and not at all at the patient’s expense. Something interesting had happened on the unit and though there was no question of shrinking from it neither was there any bashfulness in feeling grossed out. It was a happy honest moment which made me feel good about my choice of workplace. It also made me aware that I was experiencing something very private. Any outside observer would have made the honesty of this moment totally impossible. I wondered how such an occurrence would have been depicted in a TV show. I imagined appall and outrage, “Oh my God! How could this have happened in Our hospital?” How far from the truth such a depiction would be!
Not for TV
When I get to work in the morning I swipe my badge to enter the unit I am working on. I am greeted by the SNAP!...SNAP! of locks unlatching on the entrance doors. This reminds me that I work in a private place. In one sense there is no privacy for an ICU patient. There are glass doors on all of the rooms and curtains are generally kept open. The patient’s vital signs are displayed on various monitors strategically placed around the unit. The patient is meant to be under observation, or at least observable, at all times. Everything is very public in this way, but at the same time the ICU environment is emphatically not open to the general public. In three years my wife came twice to see where I was working. She would walk quickly around the unit casting a glance or two at the patient’s rooms as she passed. It is not a place where a visitor feels comfortable to sit and observe. My brother is something of a technology buff and amateur inventor. He expressed an interest in observing medical devices in action, but this is not possible. My brother is not allowed to watch me work.
There will never be any unsupervised TV cameras in an ICU. It would be a huge violation of privacy. Even regular cameras are forbidden. I have seen few things agitate nurse managers more than patient family members taking pictures of their relatives. Even talking on cell phones is against the rules and is strongly discouraged. The rationale for this is that the patient’s monitors can be affected by the phone signals, but those who know technology will tell you that this idea is false. Nurses themselves often use their own phones in empty rooms or hallways, but they are more likely to ask a family member to turn off a cell phone than to tell them to wear gloves in an isolation room. This is not limited to one hospital. As far as I am aware it is a standard policy in all hospitals. The ICU environment simply resists the outflow of information.
I am not a watcher of hospital TV shows, but I am often struck by the incongruity between the reality of the ICU environment and its public portrayal. It is not that the patient’s situations or the devices and machines are outside of the public consciousness, it is that the flow of patient care and the mood in which that care is delivered is entirely different.
An example illustrates: Shortly after I first started working in the MICU I was sitting in group report. The charge nurse from the night shift was going through the routine of giving brief updates on the patients in the unit and their conditions. She came to a particular patient and paused in the middle of the summary. She smiled slightly, relishing the moment and what was to come. “And,” she said, “A maggot crawled out of his nose.” I suddenly felt as if I were in 6th grade. Ten nurses sitting around the table let out a chorus of moans and giggles. Tongues stuck out, lips curled, everyone laughed. It was a joyful moment and not at all at the patient’s expense. Something interesting had happened on the unit and though there was no question of shrinking from it neither was there any bashfulness in feeling grossed out. It was a happy honest moment which made me feel good about my choice of workplace. It also made me aware that I was experiencing something very private. Any outside observer would have made the honesty of this moment totally impossible. I wondered how such an occurrence would have been depicted in a TV show. I imagined appall and outrage, “Oh my God! How could this have happened in Our hospital?” How far from the truth such a depiction would be!
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