DNR/DNI

What Does DNI Mean?

2011-11-18T03:23:00.000-08:00

I started the shift with two “floor boarders” – patients that did not need to be in the ICU and were just waiting for beds. It looked like it was going to be an easy day. I was relieved. This was my second week off of orientation and my first week had been a hard one. I had worked four twelve hour shifts back to back. On the third day I had expressed concern privately to one doctor about the way another surgeon had spoken with a family. My patient was certain to die. He had been DNI and was not going to have surgery, but his daughter had flown in from out of town and convinced him to go through with it. Now she sat by his bed weeping from time to time. I did not feel it was fair of the surgeon to tell her that her father had a 50-50 chance of getting better. I told one of the patient's doctors that I was uncomfortable with how things had been presented to the family. I had not spoken with the family at all about my concerns. Four hours later, while I was milking the patient’s catheter tubing for a few extra drops of urine, the surgeon came barreling in to the room to berate me for talking like that to ‘his intern.’ “If you do not think this patient is going to get better, you should not be taking care of him!” he fumed. I explained calmly that I did not see it that way. He continued to yell at me in front of everyone. I told him he needed to speak with my nurse manager and he went away. Everyone backed me up, but it remains to be seen what the long term repercussions will be.

The next day my assignment was changed so there would be time for ‘everyone to cool down.’ I watched as no one talked to the patient’s two daughters, their eyes pleading for someone to talk with them every time I walked by the room. I was busy with my new assignment – a patient who had been intubated not because of respiratory problems, but because he had fought with nursing staff. For two days he had been in a medicated coma. On the day I had him, we woke him up and extubated. I worked hard to reorient him as he awakened, reminding him where he was and telling him what had happened (the incision from a vascular procedure had become infected), every five minutes of so, until his mind cleared. His family came. He cried because his face had not been shaved. One of the techs went out of her way to shave him. I stayed on the other side of the bed to try to keep him calm. He wrapped his large hand around my arm, above my elbow. “If she cuts me, I am going to rip your arm off,” he said menacingly. I tried to brush it off, but it still bothered me. By the end of the day, I was holding one arm down and a doctor was holding down a leg in addition to three point restraints while the attending changed the central line in his neck over a wire. To show how tough he was, the patient had grabbed the line and tried to pull it out. Who does that?

So I had been off for two days and now I had my floor boarders. The patient with the daughters had died the night before. The daughter from out of town came in to thank us and gave me a big hug like she knew about everything. I took one of my patients to his floor bed. I would get a patient from surgery sometime in the afternoon. For now, I just had Mr. Jones, a small man with chronic obstructive pulmonary disease (COPD) on a Bipap mask. He was DNI.

First thing in the morning, I had asked him if he knew he was DNI. He looked at me, uncomprehending. He asked to have the Bipap mask off. The mask is hooked to a machine that produces positive pressure when the patient breathes in and helps to keep the lungs open. The mask has to fit tightly to work and is always uncomfortable. It is also noisy and it makes talking almost impossible. The order was to keep the mask on until noon and then see how he did off of it. Since Mr. Jones was adamant that he wanted it off, I decided to remove it and see how he did. I would have to watch him to make sure he did not start to build up CO2 in his blood, but this usually comes on slowly. If he became lethargic I would put the mask back on.

With the mask off, we were able to talk. I asked him if he had given instructions about being placed on a ventilator. He knew what I was talking about. I asked him if he knew that his DNI order meant that we would not put him on a ventilator even if it meant he would die. He had not realized that. He thought about it for a moment, “I think I might still have a good year left. I do not want to go on a ventilator, but if there is no other way, I would want them to do it.” YIKES! Okay. A little nuance can make a big difference. Mr. Jones was a MICU (medicine) patient. He was in the SICU (surgery) because the MICU did not have any open beds. I paged the MICU resident and told him that Mr. Jones did not really want to be DNI, that I had taken him off Bipap and that he seemed to be doing fine. The MICU resident did not come to see him, but I was okay with that. Mr. Jones was doing fine, and I could not even find a code status note in his chart. Maybe they had never gotten around to making him DNI in the first place. There would be plenty of time to sort it out.

My other patient came around 1:00 pm. He had an epidural in for pain control, but in spite of their promise to do so, anesthesia did not come back to hook it up and get it started. Soon he was in severe pain. I was in the midst of settling him in, paging anesthesia, trying to find someone/ anyone to write orders for pain meds and trying to stay on top of documentation. I glanced over at Mr. Jones. He still looked fine. His oxygen levels were still good. He was sitting straight up in bed with his head back a little panting a little like he had been. I thought I would just be extra careful and ask him if he was okay. I tapped his shoulder. He did not respond. I got closer. His eyes were open, but he seemed unable to move. I tapped him some more and tried to get him to talk to me. He was not able. I put the Bipap mask back on and called the respiratory therapist. She came to check him out. “I gave him a breathing treatment 20 minutes ago and he was fine then!” I paged the MICU resident. He told me to get a stat blood gas and asked me when the patient would be coming to the MICU.

The respiratory therapist began trying to get a needle into the artery at Mr. Jones’ wrist for a blood sample that would tell us more about how he was breathing. I took a phone call and found myself talking with Mr. Jones’ son. He asked how Mr. Jones was doing and I told him Mr. Jones was fine. I expected Mr. Jones to perk up in a minute or two and did not want to worry his son unnecessarily.

When I got off the phone the respiratory therapist called me over. She had not been able to get the blood sample, but was concerned. Why was Mr. Jones so stiff? Was he having a seizure? I felt his arms and hands. His elbows were straight and locked. You could move them with a little force, but they would push right back as soon as you let go. His fingers were also straight out and stuck together in the same way. I called the MICU resident again. “I was thinking you might want to come by and at least eyeball him. He is having some rapid changes…” He said he would come.

The respiratory therapist tried for the blood gas on the other wrist. Another RT was getting ready to try when she hit the artery and the syringe began to fill with blood. The MICU resident arrived. He examined the patient. Was this CO2 narcosis? I brought up the issue of Mr. Jones’ code status. Was he DNI or not? I had spoken with a different doctor on the phone. The resident went to the computer and found a note from the MICU attending stating Mr. Jones should be DNI, but with what the patient had told me, did that still stand? Was the patient of clear mind when I spoke to him this morning? I assured the doctor Mr. Jones had had none of his current symptoms when I had spoken with him. Meanwhile the respiratory therapist was trying to ask the doctor to put the order for the blood gas into the computer. The machine that runs the lab test is hooked to the computer system and a physicians order is required for running a sample.

The MICU doctor was clearly flustered. He went to the Bipap machine to check the settings and went to the computer to check Mr. Jones’ labs and orders. He wondered out loud if this was being caused by a brain stem lesion. He wanted a stat head CT. I informed him that patients cannot travel on Bipap because the machines do not have any batteries. He was doubtful. The respiratory therapist confirmed this. He was still doubtful. He checked the Bipap again and examined the patient again.

Meanwhile the respiratory therapist was becoming exasperated. The doctor had said he wanted a blood gas over half an hour ago, but he had yet to put the order into the computer. The RT was turning the syringe gently in her hands, trying to preserve the sample, looking to get a word in edgewise to ask the doctor again to put in the order. He was not paying any attention to her. I looked around for more experienced nurses who would know how to put in a verbal order, but did not see any. I would probably be able to figure it out myself, but this did not feel like the right time to try. Finally I stopped him, “Doctor, please, both of us are a little new here and we are really unable to run the blood gas without an order.” He snapped out of it and sat down to put the order in.

The charge nurse had taken over my other patient and had gotten him some pain medicine. Anesthesia had now been paged multiple times both for the epidural that needed to be hooked up and for Mr. Jones who might be needing an emergent intubation. They had arrived on the scene now and wanted to know whether or not to set up shop. The MICU fellow and another resident had also arrived. I told them all about my morning conversation with the patient. The reaction was the same each time. At first they would say, “then he should not be DNI any more,” but after a few moments they would back track. It did not feel like they did not trust me, but that would have been reasonable since I was meeting all of them for the first time. Maybe the thought of Mr. Jones dieing on a ventilator was unappealing. Maybe the thought of explaining it all to the family was discouraging them.

They wanted to get in touch with the son, but he was not picking up on either of the numbers we had for him. There was not even an answering machine. The blood gas came back. PH 7.069, pCO2 123 – it was worse than I expected. Another ten minutes off of the bipap mask and Mr. Jones surely would have coded and died. If not for the DNI status, they would be intubating Mr. Jones now, but the doctors were still undecided about what to do. Another anesthesiologist was on the scene now. The first resident explained that the MICU doctors were unable to decide if Mr. Jones was DNI or not. “Well they better hurry up and decide or he will end up DRT.” I did not know what DRT meant, but I got the gist. Later I found out it means, "Dead Right There."

The fellow called the attending. Final answer – DNI. In the back of my mind I thought about how disturbing this would be for me if I was more attached to what was going on. Mr. Jones had told me clearly that he did not want to be DNI and the doctors were ignoring me even though I had told them about it before all of this had happened. I tried to keep perspective. What if Mr. Jones was intubated and became permanently vent dependent. He would not have wanted that either. “I am okay either way,” I told the fellow, “but his mind was clear this morning.” I did not want her to think I had some kind of agenda.

I turned to the charge nurse who was only one year out of nursing school. She had caught the end of the conversation. I explained they were keeping Mr. Jones DNI. “That’s not what I would want for myself!” she blurted out. “I am trying to stay detached,” I said. The respiratory therapist was also upset. Should I make a scene and try to force the doctors to intubate? I was not feeling it.

Mr. Jones started to have moments of voluntary movement. He would get a few muffled words out from behind the mask and then go back into his trance. His arms were getting softer also, although they were still stiff. Over the next hour he returned to his baseline condition. A little good old-fashioned vigilance had saved the day. Whew.

When Mr. Jones could understand me, I told him that he had almost died and that he needed to tell the doctors what he had told me this morning. I told him that I had told the doctors about our conversation and that they were not going to listen to me. I did not elaborate because I did not want to disturb him unnecessarily. He seemed to grasp the situation well enough from what I told him. He wanted the mask off again. I told him that was not an option.

After another hour we took Mr. Jones up to the MICU. I checked his orders on the computer the next day. He had been intubated at 8:00 pm. I suppose I should have felt happy about that.

After two weeks, Mr. Jones was sent, still on the ventilator, to the MICU of a long term care facility.

Liver Transplants Do Not Always Work Out

2011-10-14T04:39:00.000-07:00

I hear a call on the overhead paging system requesting all available hands to help with a turn in room 4. My hands are available, so I go. I join two other nurses and a tech at Mr. Jones’ bedside. I can see right away it is another liver transplant gone bad. We see quite a lot of them.

If you go to the patient information websites for liver transplant programs and click on “waking up in the ICU” you generally find something like, “you may have some pain from your incision, but your nurse will take care of that.” The same site will tell you that 80% of patients survive for more than 5 years. That means that 20% do not; but try to find information about what happens to that 20% and you won’t find anything. So, here goes.

Mr. Jones was deranged and panicked from toxins (chiefly ammonia) that had built up in his blood due to liver failure and organ rejection. Had he not had a plastic breathing tube in his airway, he would probably still not have been able to speak more that a word or two and groan. As we go to turn him, he resists everything we do. His bed is full of blood, stool and bodily fluids. We need to clean him up and change his sheets.

He is in four point restraints – tied at the ankles and wrists with cloth straps that stop him from trying to get out of bed (he would fall) and from pulling out his breathing tube or his various drains and lines. As we undo the restraints to turn him, Mr. Jones claws at us. He makes a fist and tries to hit us. He tries to kick us. As soon as he gets slack, he tries to grab his breathing tube. We are used to this type of behavior. We hold the cloth straps tightly where they meet his wrists, “Please don’t do that Mr. Jones.” We need four people for this turn. A nurse can get in a lot of trouble for “letting” a patient pull out their breathing tube. Self extubation is an urgent emergency that requires the attention of multiple physicians and activation of the unit’s staff assist system. Suddenly, the room will be filled with 20 pumped up nurses and doctors like in a code and they will all demand “Why wasn’t this patient restrained!?” which is not to say that there is not understanding for what can happen from time to time. The patient also is at risk for brain damage from hypoxia etc. We do not give Mr. Jones any leeway. He is not going to pull that tube.

He is too weak to be dangerous to us, but he is full of Hep C and other nasty diseases, and even a scratch would be worrisome. His obviously sincere efforts hurt us do not evoke compassion. With his pale skin, drawn face and angry eyes, he fits the mold of the mean drunk. One can easily imagine him turning this violence on his lovers. My mind wanders to the moment he heard that a liver was available. He must have been so happy. All that waiting for some poor guy to drop dead was finally over. Well congratulations Mr. Jones – you got your liver.

We, his enemies, have him pulled up on his side and are wiping the liquid stool from his paper thin, yellow skin. He is full of fluid. His skin is tight and painful. Any puncture site (and he will have a few) oozes clear yellow fluid (if not blood) and does not stop. His belly is distended to perhaps 10 times its normal size. His scrotum has swollen to the size of a cantaloupe and it is raw and bleeding. He had expected to be home watching TV by now.

I am thinking about writing this. I test my thoughts, “Do you think he knew he could end up like this?” “I do not think any of them have any idea of it.,” confirms Terry, the charge nurse. Terry has been a nurse on this same unit for more than 10 years. She likes my straight talking and reciprocates with her own. Unbeknownst to me she has already put in for a transfer to another service. Many of the senior staff have already left over a conflict with the new manager. Terry was a holdout, but she is now joining the exodus.

The tech nods in agreement. The other nurse in the room is younger and less experienced. She makes a sour face and avoids eye contact. Perhaps she is thinking about the heroic transplant surgeons or the miracles of modern medicine. My perspective of the scene before us is not one she has any intention of embracing. She would rather I keep it to myself, but she is clearly in the minority so she does not say anything and keeps busy cleaning.I try to remind myself that transplant surgeons are not intrinsically evil. I have seen almost exclusively the 20% of liver transplant patients that die long and horrible deaths. Perhaps if I saw more of the other 80% I would feel better about it all. It is all somehow ghoulish though. I am not able to get comfortable with it. Has Mr. Jones been reduced to the mentality of a caged animal by the influence of his disease, or has he realized too late that he is being flushed down the drain of modern medicine with no expense spared? Why shouldn’t he see us as his enemies? He was not told of this possibility which is now his hellish life. I have spoken with a few patients whose liver transplants did not go bad. They had no idea how things could have been. What were the statistics for Vioxx? One in how many hundreds of thousands died? For liver transplants it is one in five. And the Vioxx people dropped dead suddenly. They did not suffer over weeks and months like these transplant patients do. Yet we never hear about the transplant patients in the media - just calls for more donors.

Here is another concern – Mr. Jones was probably still in fairly good health before his transplant. The healthier the patient is, the better his chances after transplant, so the surgeons do not like to wait for their patients to get ill. When laboratory tests and scans show that the liver is likely to fail, the patient is encouraged to sign up for the transplant. The transplant takes place while they are still in good shape which leaves open the question as to how many good weeks, months or years they would have had without the procedure.

Then there is the donation process. Nurses I have spoken with who have assisted with organ harvest express deep discomfort with it. It is by all accounts a bloody mess. The nurses complain that the doctors are not properly respectful of the donor bodies. I wonder if it is possible to respectfully cut a liver out of a functioning body. There is also generally a lot of joking around that goes on in the OR. I imagine that this could seem very different when you do not expect the patient to get better at the end of it all.

A lot of money is generated from these organs. Transplantation must be a billion dollar industry. The surgeons are no doubt well paid, but the industry also supports a host of coordinators, “counselors” who speak with the families of potential donors (do they get to keep their jobs if they are not good at getting families to donate?), nursing staff, clerks etc. The ICU nurses also care for the donors bodies as one-to-one or even two-to-one patients because of all of the extra lab work and medications that are required for maintenance and preparation of the bodies. Again, these nurses would generally rather be spending their time on a patient that has a chance of getting better - and that is without even considering that the recipient might not do well. So many livelihoods are at stake. Shall we pretend that no one is influenced by this?

I once saw a candidate for organ harvest being evaluated by a surgeon. The patient had been a two-pack-a-day smoker for twenty years and the surgeons were considering taking his lungs for transplant because he had a small frame and small lungs are in high demand for young cystic fibrosis patients. The patient had suffered from a heart condition, but they were considering taking his heart as well. In the end it did not happen. I heard the surgeon talking on the phone saying that he would do the harvest, except that he had never done it before and had only observed once. He did not feel comfortable doing the procedure on his own and there was no one else available at the time.

The unfortunate liver transplant recipients suffer through liver failure and organ rejection at the same time. If they stabilize, they may be confined to bed, weak, of disturbed mind, swollen and in pain. These are the patients who beg for death and their pleas are almost always ignored. The surgeons seem to live with themselves by not contemplating the cases that go bad. They make their daily rounds and encourage the family members to remain hopeful. ‘We just have to get on top of the latest infection. Maybe he will only need dialysis temporarily.’ The family members somehow keep their faith in the surgeons and become callous to their loved one’s pleas (he is feeling weak, who could blame him? but I will be strong for him). These patients pull on anything they can get their hands on. They will rip the feeding tubes right out of their stomachs. The nurses, who are often the most sympathetic to their wishes, are also the ones who have to make sure they are tied tightly at all times.

Once I found myself yelling at one such patient whom I had untied for a short period in the hopes of giving him more freedom. “Stop pulling on that! If you don’t, I am just going to have to tie you up again!” I felt someone watching me and turned around to find the adult son of the woman in the next room giving me an icy stare. How could I explain it to him? The next day I was filling out a job satisfaction survey. I was surprised to find the question, “Do you feel your work is hardening you emotionally?” I was even more surprised as I found myself clicking on “strongly agree.”

From the Other Side of the Looking Glass - Heavily Armed

2011-01-09T18:20:00.000-08:00

My letter to the patient advocate:

"To whom it may concern,

I am writing to register a complaint about the behavior of Pediatrics Attending Dr. N. My newborn daughter is currently under Dr. N's care against our wishes and in spite of multiple requests for an alternative physician.

Our complaints are as follows:

1. Dr. N misrepresented himself and his role in the care of my wife resulting in a great deal of unnecessary emotional distress and greatly complicating our post-partum course of care.

2. Dr. N was emotionally and physically inappropriate with my wife, culminating with him cornering my wife in the hallway when she had left the birthing suite to get away from him and kissing her on the cheek.

My wife and I had planned a home birth and were under the care of the X Birth Center. We came to University Hospital for induction of labor following premature rupture of membranes without progression to labor. Upon our arrival we requested to speak with the Peds attending as it was our desire to take our infant home with us with the minimum hospital stay and with a minimum of medical intervention and we wanted to discuss our soon to be born infant's plan of care with the doctor who would be taking care of her.

We had not had any previous contact with any physician when Dr. N arrived in our room and immediately began to tell my wife that she needed to prepare for a C-section and that this was most likely going to be unavoidable for us. This was very distressing for my wife who had planned a home delivery and had hoped to be able to have one up until an hour before arriving at U.Hospital. Dr. N. then told us how he planned to care for our as yet unborn child. When my wife, who was by this time extremely alarmed, protested that she would rather sign out AMA than follow the course of care proposed by Dr. N, he responded by placing his hand on my wife's feet and saying that if she were his daughter, he would beg and plead with her not to do such a terrible terrible thing. We continued to try to register our desired plan of care with the Dr. and he continued to assert that he was going to ignore our wishes, referring to our soon to arrive daughter as "my baby" and claiming to be the baby's ombudsman. He also continued to talk about my wife having a C-section and gave dire predictions about what was about to happen to her, all of which proved to be entirely unfounded. Dr. N's demeanor so upset my wife that she got out of bed and fled from the room. I continued to speak with Dr. N, who continued to state the he was not going to be responsive to our concerns and desires and that he knew my wife would do what he wanted her to do because he could see that she loved the baby. Meanwhile my wife was out in the hallway desperately inquiring from the nurses for a way to escape from this physician, if not from the hospital all together. When my conversation with the doctor concluded without agreement on a plan of care, he left the room and sought my wife out in the hallway where he, without any consideration for her state of mind or her regard for him, approached her, kissed her on the cheek, and offered assurances that he would take care of everything etc.

My wife returned to the room only after assurances that Dr. N was not her OB and would not have influence over her course of treatment. We immediately began to state the we did not want any further involvement with Dr. N and inquired as to alternate physicians who might be available to us. We were told that there was essentially no alternative to Dr. N available to us. We also asked for the patient advocate and were ultimately visited by a hospital representative although we were not able to speak to her in detail as my wife was in active labor by the time she arrived.

My wife and daughter were both entirely free from complications and had no signs and symptoms of infection. Out of a desire to return to our previous birth plan and specifically to avoid further contact with Dr. N, we attempted to arrange to take our daughter home without lab draws or other invasive tests. We declined Dr. N's offer to release us immediately upon receipt of negative lab results because we flatly do not trust him and find interacting with him to be distasteful. We requested to speak to the attending on call for nights and offered to have the labs drawn if we could transfer care to her, but we were told that she was not responding to pages and that there was no way to contact her. We attempted to sign our daughter out AMA but were told by a social worker that if we did so child protective services would be called and our baby would be taken away from us. We offered to return daily with our daughter so that her condition could be monitored and inquired as to other possible alternate arrangements, but to no avail.

At this time my wife remains at the hospital with our daughter, essentially being held captive against her will. We are told that a Neonatologist will be made available to us for a second opinion in the morning, but we are still under Dr. N's care. We have reached a stalemate, where he says he will release us in 48 hours if there are no complications. Unhappily, we remain at his mercy.

Obviously, we are extremely unhappy with the care we have received. Dr. N lost our trust when he made disturbing assertions about my wife's care when he had no business doing so. He is the pediatrician and had no business discussing C-sections or any aspect of my wife's treatment with us, much less being the first to do so. We find his demeanor condescending, arrogant, and entirely dismissive of our role as parents. We find his physical contact with my wife to be entirely unacceptable. We feel something should be done to rectify the situation.

We were very happy with the physician who delivered our baby and with the nursing staff on the unit and have had positive experiences and interactions with all of the hospital staff with whom we have come in contact with the exception of Dr. N only.

Thank you very much for your attention.

Sincerely, Leo."

We ended up signing out AMA after 24 hrs and another showdown with the social worker. The sky has not fallen on us yet.

How to deliver bad news (not)

2010-07-18T03:19:00.000-07:00

“If we had been doing our post-op neuro-checks like we are supposed to we might have caught it and been able to do something about it. Maybe we should look into that one day,” says the charge nurse a little wistfully and a little sadly. The next moment she is off to something else. This is my first time floating to the cardiac surgery intensive care unit (CSICU) and it is the busiest unit I have seen. My patient, Mrs. Jones, otherwise healthy for a 73 year old, has had a surgical repair of an abdominal aortic aneurism. During the operation blood flow to her spine was accidentally interrupted and Mrs. Jones is now a paraplegic, although she does not know it yet.

My other patient, Mrs. Smith, is on no less than six vasoactive drips, has a Swann (a pressure monitoring catheter that runs through the heart), is going in and out of V-tach and is already hooked up to the defibrillator in case she needs to be shocked at short notice. It is unusual to be assigned a patient in this condition on a first float to a unit, but she is awake and responsive and more or less stable. Given the level of acuity on the unit (the patients here are very sick) the assignment is appropriate. Tina, the charge nurse is very responsive, so I do not worry so much about the drips I am unfamiliar with and the Swann. I ask the questions I need to and get answers. When I arrived at this hospital, I received a four week orientation before I was allowed to take care of patients – and I had been working in the same kind of unit prior to coming here. Now I am floating, so I just have to say a little prayer and dive in.

Mrs. Jones’ daughter and son-in-law know about what has happened. They are waiting for the doctor to tell her himself before they talk about it with her. They are understandably impatient for this to happen. Mrs. Jones is lethargic, but awake, and asks occasionally why she cannot feel her feet. Her daughter responds by changing the subject. I try to find a doctor to speak with her, but the doctors on the unit all decline. They say that the doctor who did the surgery should be the one to tell her, and since he is in surgery now, he is not available. Mrs. Jones will have to wait. I explain the situation to the family.

I watch Tina following the physicians on rounds and coordinating the care on the unit. She seems twice the nurse I am. Her phone rings every five minutes with new information about patients coming to and gong from the unit etc. and she rushes all around the unit taking care of whatever needs attention. I do not have to wait more than five minutes for her to come around if I have a question. During brief pauses, Tina talks with her friend, another experienced nurse, about the stresses of being a single mother. After today’s twelve hour shift she has a PTA meeting. She wants to find a partner, but all the men are only interested in one thing etc.

Mrs. Smith’s Swann numbers and waveforms do not look right to me. Tina tells me to trouble shoot the setup, but I do not take Swanns very often, and what Tina is telling me to do does not seem to fit with what I am seeing on the monitor. I insist that Tina should come into Mrs. Smith’s room and look for herself. She does so and, after a minute or two of checking the tubing, she calls the doctor to advance the catheter. The end had been flapping around in her heart instead of being in the pulmonary artery where it belongs. No more V-tach.
Mrs. Jones’ family continues to wait in frustration. People from nutrition and physical therapy come by. Everyone wants her to know about her paraplegia, but we are all waiting for the doctor. The family begins to say that they will tell her themselves soon if the doctor does not come. I try to find out when he might be coming, but get no information.

The doctors order a blood filtration treatment for Mrs. Smith. It will be something like dialysis, but more simple. The treatment is administered by nursing. Tina wheels in a machine about the size of an average microwave oven and asks if I am ready to be trained how to use it. She leaves for a minute and returns with a plastic filtration cartridge. “Each one of these costs $3000,” she says as she rips open the sterile package. Tina begins the complicated process of inserting the cartridge into the machine. She gets confused and struggles with it for 20 minutes or so. While she is absorbed in figuring out the machine, her phone rings. A room is needed urgently for a new patient, but the only empty bed is being held for a patient who is in the OR. As she talks with the coordinator, she continues to work on the filtration machine and she forgets herself. “I wish X would just die in the OR (a hopeless case presumably) so that we would have the bed for Y.” I glance over at Mrs. Smith, but she is watching TV and not paying attention. Patients tend to tune out a lot of the discussions that go on around them as they are generally too technical to follow. Tina never did get the filtration machine set up.

A little while later I am sitting at the nurse’s station talking a little with Tina’s friend from earlier in the day. Tina comes by and I joke with her, “You know, it is usually not a good idea to wish one patient dead while in another patient’s room.” Tina turns pale and looks nauseous. “I do not think she heard you,” I add quickly. “I said that in a patient’s room?” Her friend starts to tease her about it lightly, but Tina does not see the humor in it. She is a good nurse.

Around 4:00 PM Mrs. Jones’ daughter tells me that they are ready to tell her about the situation if the doctors do not come right away. I let the doctors know and one of the fellows, not the original surgeon, comes to talk. He is obviously uncomfortable and unsure what to say. He explains that they are not really sure what has happened (lie), but that some blood flow to her spine was disturbed. They are not sure what her final status will be (lie). He tells her that the operation was very complicated and that she is lucky to be alive. He ends with “Just keep trying to move.” My anger rises as I listen. Why can't he tell her the truth so that she can understand it? As the fellow heads out of the room a technician from bed supply comes in. “Is this the New Para?” (as in paraplegic). This is now more than I can take. Will Mrs. Jones learn that she is paralyzed from bed supply? I ask the daughter for permission to clarify and she gives it readily. I tell Mrs. Jones that the blood supply to her spine was cut off during the operation and that the damage is irreversible. Mrs. Jones’ expression becomes so blank I become unsure if she can understand me. “Do you know what paraplegia is?” I ask. She nods once, still blank. “So, you are now paraplegic,” I say feeling how badly this is all coming out. I excuse myself as the bed tech starts to set up the specially padded bed which helps prevent bedsores from forming on immobile patients. I vent my frustration to the secretary, who alerts the nurse manager. She asks me about the situation and I tell her that I feel the fellow’s presentation was totally inadequate and ridiculous. I do not know what she did with the information, or what she thought about me or anything after that. We moved Mrs. Jones to the stepdown unit that afternoon.

My Code Blue

2009-12-01T08:57:00.000-08:00

There had been a question as to whether Hal (another floater like myself) or I would take the patient that was coming down from the Neuro ICU. I was assigned the empty room, but Hal, who was both more experienced and better known to the nurses on the SICU, had initially been given the patient and had taken report by phone already. I do not know what kind of calculations went on, but it was decided that I would take the patient after all.

Hal sat down with me at a computer and pulled up the patient’s chart. As we looked through her labs, Hal told me her story: Mrs. Wilson had come to the hospital for treatment of a brain aneurism. A catheter had been inserted at her groin and passed all the way up into her brain. When the aneurism (an out pouching of the blood vessel) had been reached it was “coiled” or filled with some kind of springy string (that is what it looks like in the pictures anyways). This had gone smoothly, but when the surgeons had tried to treat another aneurism they had found just past the first one, they “lost the coil” (in Mrs. Wilson’s body) and she had been spiraling down since then.

The exact cause for Mrs. Wilson’s rapid decline had not been determined, but she appeared to be going into multiple organ failure. She was coming to SICU to be started on continuous dialysis for treatment of a metabolic acidosis. Hal and I looked at her blood gasses (labs that show blood oxygenation, PH, etc). The metabolic pathways of the body require a slightly alkaline environment. Normal PH is 7.35-7.45. Anything below 7.20 is generally considered critical. At 7.0 the heart will stop beating.

It was 11:00 am. At 6:00am Mrs. Wilson’s PH had been 7.06. The latest blood gas had a PH of 6.98. Mrs. Wilson was about to code and die. “They should not be transporting her, they should code her there.” I say. Hal and I discussed what was going on. The neuro ICU is generally slow and they do not generally have a lot of codes. Perhaps they did not feel up to it. It is an ICU though and they should have been able to handle it. A nurse could be sent from another unit to help them with the continuous dialysis machine if they were not comfortable with it. Perhaps the doctors were trying to spread the blame. Mrs. Wilson would die under the care of General Surgery instead of under the Neurosurgery service.

The charge nurse, Mark, headed into the empty room to make sure everything was set up properly. “What is going on with that neuro patient?” “It's a dump, (on us by Neuro ICU), she is about to code.” I say. Hal concurs “It is a dump,” he says. We will need backup.

Mrs. Wilson arrives with an entourage of two nurses, a neurosurgeon, a respiratory therapist pushing a ventilator, and a tech pulling two IV poles packed with at least 6 IV pumps - all running fast. Her blood pressure is low, her heart rate high, but the levels are alright for the time being. There is no pulse-ox (blood oxygenation) reading. We rush to get her settled in the room. I check Mrs. Wilson’s IV access. She has a central line in her neck and one on each side of her groin. There is a femoral arterial line also. I make sure I know which is which. There is no dialysis catheter. One will need to be inserted before she can get dialysis, if we ever get that far. I find the IV ports I will use for injecting the code drugs and another two ports that will be used for fluid boluses and blood products when they are ordered.

I turn to the pumps. Dobutamine, Levo, Epinephrine, (pressors for low blood pressure) all running near of above maximum allowable doses. At normal doses, a bag of these drugs can last a couple of days. These bags will need to be changed every couple of hours. I check to see that they have brought me spare bags. They have. Sodium bicarbonate is hanging. It is running at the standard rate. It is used for treating acidosis, but it will be like a garden hose on a forest fire at this point. I make sure there is a spare bag. Still no pulse-ox reading. No way to know if she is getting air or not. The mechanical ventilator is on high settings with 100% oxygen. That will have to do for now. Epinephrine causes vaso-constriction and can shut down peripheral circulation. The pulse-ox reads from peripheral circulation, so we may be out of luck. We can send blood gasses to the lab instead – it just takes half an hour or so to get the results back.

I call out for help and the room is soon flooded with staff. The code cart arrives and a nurse opens the drug drawer and begins screwing together the syringes of epi, atropine, bicarb, etc. I am with the IV pumps, on the opposite side of the bed from the IV ports that need to be used for pushing the code drugs, so another nurse starts pushing the drugs the doctors are calling for while I increase the doses on the drips that are already running. The epinephrine drip was already over the suggested maximum dose. Following the doctor’s instructions I max out the levophed as well. Mrs. Wilson is a big lady, so two of the techs perform chest compressions in tandem – one on each side of the bed pumping in unison. The respiratory therapist takes Mrs. Wilson off the vent and uses an ambu bag to ventilate her by hand. She says Mrs. Wilson’s lungs feel stiff. The nurse documenting the code keeps track of the timing of the doses of code drugs, calling out every two minutes when another round can be given. I call out to the room that Mrs. Wilson’s PH is below 7, but it does not seem to register. The pumps are now taken care of and I am feeling uncomfortable that I do not have an active role in the code any more. It is my patient. I should be pushing the drugs. It is like someone else is doing my job for me. The other nurses may feel I am not up to the task. Nothing to do now but endure it though. We keep pushing bicarb every two minutes. That should help if anything can.

We stay at it for ten minutes or so. Suddenly Mrs. Wilson’s heart starts to beat 120 times a minute. Her blood pressure shoots up to the 230’s. The chest compressions have pumped the code drugs to her heart apparently and it has resumed its function. There is still no pulse-ox reading. Everyone stops and watches the monitor for a few minutes. When it becomes clear that the rhythm is stable for the time being, the room begins to clear out. One of the doctors tells me to start backing down on the levophed, but I do this conservatively. He seems to think she will be fine now, but with her low PH I am not so confident.

Soon word comes that the surgeons will be performing an operative procedure on Mrs. Wilson. They will do it here in the room since she is too unstable to transport to the OR. A team of nurses will be arriving from the OR shortly. I am to get the room and the patient ready.

It is just me and Hal in the room now. I pace up and down the room trying to clear space and do anything else I can think of while repeating out loud to Hal, “This is beyond my experience. I have never done anything like this before.” Eventually Hal replies that he has only seen it a couple of times himself. Apparently what mainly needs to be done is to pack absorbent pads under the patient’s body so that the bed does not become entirely soaked with blood. I help Hal get the pads tucked in from mid thigh to mid chest on both sides. They will be opening Mrs. Wilson’s belly.

Someone calls in that all the OR nurses need is an extra suction set. The charge nurse has been staying nearby and he goes off to get the supplies. While he is gone, the OR team arrives. Two OR nurses wheel in a cart full of instruments and begin to set up shop. They ask about the suction and we tell them it is coming. Dr Lew, the attending, will perform the surgery. Suddenly the room is full of doctors. The residents and interns will watch. A new fellow is also in the room. She ran the code, but her background is apparently not in emergency surgery. The attending jokingly invites her to do the surgery and she puts up her hands and takes a step backwards. Maybe by the end of the year she will be ready.

There is a dreamlike sensation for me as the world of the OR, which I have never really seen before, now invades my room and my territory. Standing at the side of the bed, I watch as Dr. Lew, who I have worked with before but never seen in surgery, takes a scalpel and makes a deep incision from just below Mrs. Wilson’s sternum down towards her navel. A faint smell of barbeque wafts through the room as Dr. Lew uses an electric cauterizing probe to stop any bleeding. We have the suction set up now, but when we hand the end of the tubing to the OR tech she barks at us, “This is not sterile tubing!” We stammer, ashamed “All…All we have up here is clean tubing…” One of the OR nurses has an idea and cuts the one section of sterile tubing they have brought with them in half. We use a connector to hook it to our tubing and the OR nurse gets the suction into Dr. Lew’s hand just a moment after he reaches for it for the first time.

I am pushed out of my bedside spot by a surgical resident who feels more entitled to be in the front (fair enough), and I find myself standing in the second row, next to the fellow. As we observe Mrs. Wilson’s dissection, a thought occurs to her. “Have we given any anesthesia?” she asks me. I look into her eyes and shake my head slowly. For just a moment we both shudder, but it passes quickly. You would not, could not give such an unstable patient anything that might have a depressing effect on her physiology. Besides, Mrs. Wilson is not moving a muscle. She has been as still as a stone since she came from Neuro.

As the young doctors gather round, Dr. Lew rummages hand over hand through Mrs. Wilson’s guts like a boy digging in a sandbox. He takes her large intestine in his hand and shows his students the areas that have been denied blood flow – “this area is normal… this area may recover… this area will not recover and will need to be removed, but we will come back and do that later.”

As they finish, Dr. Lew takes sterile towels moistened with saline, lays them across her intestines, and tucks them in around the edges of the incision (an opening about two feet long and one-and-a-half wide), “so she does not eviscerate while being turned.” A plastic vacuum dressing is then applied and attached to the wall suction unit with plastic tubing. A steady trickle of pinkish fluid begins making its way over Mrs. Wilson’s shoulder on its way to the canister on the wall.

The whole procedure is over in less than half an hour. My dreamlike feeling returns as I watch the OR nurses counting out their instruments, making sure nothing has been left behind. “5-6-7 of this kind of clamp I have never heard the name of before, 5-6-7 of that clamp,” etc. I conclude that OR nurses are entirely different creatures from unit nurses. These two middle aged ladies are cool, calm and collected. As they focus on their work, they seem to see only an operating room around them. The OR must have sent their best.

Mrs. Wilson’s blood pressure has remained high throughout the procedure. I have been slowly backing down on the pressors and her systolic pressures are now below two-hundred. I have not had time to check orders since the code, what to speak of documenting vital signs. Labs must have been ordered after the code. I draw the blood from Mrs. Wilson’s arterial line and hand the tubes off to another nurse who labels them and sends them to the lab through the tube system.

Mrs. Wilson maintains for the next half hour or so. The charge nurse asks me how she is doing now. “She will code again soon.” I reply. “Don’t say that!” he says, but I need him to know I will need him to stay around. The fellow hangs around also, catching up on other work on the computer just outside the room.

The first labs come back just as Mrs. Wilson’s blood pressure drops out and her heart slows to a stop again. Her blood PH is still below 7. I call for the fellow and the charge nurse, max out the pressors on the IV pumps and take my position at the head of the bed where the IV access is. I lay out saline flushes and use them to chase the code drugs in. Maria, the nurse who was pushing the meds last time asks me if I want her to do it again. I shake my head and ask her to fill out the code documentation. The charge nurse continues to assemble the syringes of code drugs and hands them to me when it is time. I call out, “Epi is in!, Atropine is in!, Bicarb is in!” as I push them. Maria writes it all down. I call out, “Her PH is 6.97,” again, but it falls flat again. Compressions go on, the bagging goes on, more liter bags of saline are hung on pressure bags and infused wide open. After another ten minutes we get her back again.

The room clears out again as Mrs. Wilson holds her blood pressures of over 200 again for now. Soon it is just me and the fellow in the room. “What do you think is going on?” she asks. “I think her acidosis is stopping her heart and that it is also causing massive tissue death which is feeding her acidosis in a viscous cycle,” I reply. She seems to agree. I had assumed the doctors were on top of this, but I begin to wonder if I was wrong. “So what do we do?” asks the fellow. “Well, I think the bicarb is what is bringing her back, but it is only going to be temporary. She is going to continue to code. I think you need to talk to the family.” She agrees. I suggest turning the bicarb drip up to buy time. She agrees to that also and I turn the rate up to one liter an hour.

Soon the fellow and the Mrs. Wilson’s daughter are in the room talking. I go to a computer to check orders and to give them space. From the hallway I hear the daughter, who appears to be in her late twenties, protest, “What is going on here!? First they told me her heart had only stopped for a minute and now you are telling me it was stopped for ten minutes! What is happening here?” The fellow must be telling her that there has probably already been a lot of brain damage and that it might not be the best thing to continue trying to save her.

The fellow leaves the daughter in the room. I go in to check the pumps and clean up what I can. Mrs. Wilson’s body is covered with a sheet to hide her incision. “Oh Mom,” says the daughter, her voice cracking a little, “I’m sorry....I did not come around more.” She asks if pink fluid in the suction tubing is coming from the procedure that was just done. I tell her that it is. She stays for a few more minutes in silence before returning to the waiting room.

The code gets up to full speed. One of the nurses asks how many times we are going to do this. “Someone needs to bring the family!” I call out. This time my words find purchase. Eyes turn to the fellow. The rest of the team does not know about our conversation. Will she take this as a challenge to her authority? There is a moment of tension in the room. “It’s alright, go get the family,” she says to one of the techs quietly but audibly. The tech leaves the room immediately. We resume the code. In a minute the daughter returns. Right away, she starts saying “No, no, stop this, stop this.” With a signal from the fellow we stop. There is no heartbeat. Mrs. Wilson is dead. The daughter weeps. One of the nurses turns off the IV pumps. The respiratory therapist turns off the ventilator. The room clears out. The daughter leaves to tell the other family members.

My work is not done. It is time to prepare the body for viewing. Another nurse and I fill three garbage cans with used sterile drapes, packaging, empty syringes etc. Two laundry bags are filled with bloody sheets. I suction the drool from Mrs. Wilson’s swollen, lifeless face and wipe blood from around her mouth. The breathing tube and other lines need to stay in place in case the family decides they want an autopsy, but I remove what I can. I turn off the hissing suction at the wall and toss the canisters, half full with blood and mucous, into the trash.

I want the body to look as natural as possible. A small IV on the inside of Mrs. Wilson’s elbow catches my eye and I decide to pull it. It is a mistake though; blood pours out from the puncture and does not stop. I put a piece of gauze on the site and fold her arm over it to contain the bleeding. We put a fresh sheet over the body, up to the chin. I leave Mrs. Wilson’s other hand uncovered incase someone wants to hold it.

The daughter returns with two younger siblings, but the site is too disturbing for them. The daughter asks if the tube can be taken out of her mother’s mouth. I explain about the autopsy issue and she brushes it off. “We do not want that.” I find Dr. Lew speaking with some other doctors outside of the room and tell him. I expect the customary resistance to the proposal, but Dr. Lew readily agrees. Maybe he does not want an autopsy either. I am disconcerted. What if the family regrets this later on? I reason with myself that if they want to pursue some kind of legal action that there will be plenty of information to work with in any case. I decide not to disturb them with my concerns and I tell the respiratory therapist that the family wants the tube out and the doctors are okay with it.

I return to the room and tell the family that the respiratory therapist is on her way. I disconnect the breathing tube from the ventilator circuit in the hopes that it will look a little better that way. The family is already on their way out though. A frothy pink foam starts making its way out from Mrs. Wilson’s lungs and dropping onto the bed. I am glad that the family did not stay to see this.

As I start to work on taking down the network of IV tubing from the pumps, a young doctor comes into the room. He must be the neurosurgery resident. It is as if he is trying something out on me as he starts saying things like, “She was doing well when we brought her down here. How could I have missed the early warning signs?” I am not having any of this though. Without looking up I say, “She was critically acidotic from 6 o’clock this morning.” This silences him. By now I have decided not to bother separating the IV tubing and I am cutting though the tangles with a scissors. Some of the lines have not been clamped and I tie the ends off to stop the fluids from pouring onto the floor. This kind of cutting could never be done in life and watching it seems to drive things home for the resident. Mrs. Wilson, a reasonably healthy middle aged woman, walked in for an elective procedure yesterday and now her body lies before him dissected and dead. The resident mutters loudly “Shit!” and exits.

The tube is out. The room is clean now, save the overflowing trashcans off to one corner. I turn the lights down and go to the waiting room to invite the family to return. At first I am not sure if they will come back again or not. After a few minutes the daughter returns with her younger sister. They are in the room alone together for only a minute. As they leave the younger sister is crying, “It does not even look like her!” I try to imagine what Mrs. Wilson’s face must have looked like in life.

It is 6:30 pm now. My shift ends at 7:00. Finally, I sit down to write my nurse’s note and chart vital signs. Another nurse asks if I need anything and I ask her to print out the record of Mrs. Wilson’s vital signs so I can copy them to the nursing flowsheet. The nurse returns looking as if she is nervous that I may become angry and informs me that the computer data has already been deleted. The asystole (no heart beat) alarms on the central monitor go off every two minutes until the patient has been discharged from the system. Discharging the patient erases the data. People usually ask the patient’s nurse before doing it, but not everyone knows what to do. Anyways, it does not disturb me. Maybe I am braver or more foolish, but I just do not see this being a problem for me even if something legal happens with the case. The code documentation is there and I put in a few estimated vitals from memory. I write an explanation in my nurse’s note along with a summary of the day’s events.

My shift is over now. I was tired at the beginning of this day, and now a peaceful sort of exhaustion is taking hold of me. I ask the night charge nurse if it is okay if I leave the tagging and bagging for them. Everything else is done. It is okay.

I get a few pats on the back as I am leaving. I think that calling for the family during the third code was particularly appreciated by the other staff. “I know you make more money as a floater, but you should come and work with us,” says one of the techs, a black woman with whom I have had some friction in the past, “We need more men here.”

Passing the Final Test

2009-09-17T11:46:00.000-07:00

I do not remember Mr. Hardy’s case very well. I think it was a GI problem where surgical options had been tried and exhausted. I am sure the prognosis was firm. Mr. Hardy was also firm; he wanted to be allowed to die naturally.

He looked good for his age. He was mentally appropriate. He might have gone a few more weeks before his code status really needed to be finalized.

I decided not to wait. I was not looking forward to talking to the family, especially since I seemed to be a little out in front of the herd from the beginning, but we can never be so sure how things will go.

I talked to the family. As I expected, no one had really broken the news to them. They handled it well though and supported Mr. Hardy’s decisions. They did not want to interfere or talk him out of anything.

I pressed the doctors to get the documentation in order. They decided to order a psyc exam for good measure. Fair enough.

The psychiatrist came and started her examination. I bristled with the first questions, “Why do you want to die? What’s wrong with you, you don’t want to live anymore?” I relaxed as it became apparent she was not out to push something on him. It was only right for her to prod Mr. Hardy a little. We pinch patients for neuro exams. She needed to know where Mr. Hardy was coming from.

Mr. Hardy remembered the list of words she gave him and could recite it frontwards and backwards even after a little distracting conversation. Mr. Hardy was a little fuzzy on the date and where he was, but the psychiatrist did not make too much of it. Then I watched as the substantial part of the exam began. Mr. Hardy seemed to know exactly what to say. I wonder if he did know somehow what had to be said of if he was really just in the space he needed to be in.

“Do you want to die?” “No.”

“Are you in pain?” “No.”

“Do you feel like hurting yourself or others?”

“Do you feel depressed or sad? “No and no.”

“Why then do you want to be DNR/DNI?”

“I just want to live on my own terms. If I cannot live on my own terms, I do not want to be maintained artificially.”

For some reason, the above answers, and particularly the last one, are THE ONLY answers that do not lead to loss of autonomy and control over decision making. Who knew the words “on my own terms” had so much potency. I suggest concerned readers commit the phrase to memory, but don’t try using it for other situations - you will just end up tied to the bed.

The paperwork was completed. The family was on board. I went home for the night. When I came back the next day, Mr. Hardy had just expired. The night nurse was just a little flustered. He had given a few fluid boluses, but there was nothing else to do.

I was happy with the job I had done. I was assigned a nursing student that day and the two of us set to work cleaning up the bedspace. We got rid of everything we could and made it as inviting as possible. I saw the student feeling inspired by it all. Mr. Hardy’s grandson came and spent a good 15 minutes sitting beside Mr Hardy’s body, just looking at him. His gaze was full of admiration. His grandfather had known his time of death was coming and had ended his life in dignity.

Another Glorious Save

2009-09-12T11:08:00.000-07:00

We have our suspicions.

In any case, the hernia repairs left her with infected, perforated bowels which did not get better. When I first took care of her, all but 30 cm of her small intestines had been removed. For a couple of weeks she had been opening her eyes and looking around the room, but had been unable to respond to her name or connect with anyone. The 3’X 4’ cavern where her guts had been was now filled with black vacuum sponges and covered with an airtight dressing. Two suction tubes hooked into this dressing pulled about a liter of pinkish yellow fluid off every hour and it was the nurse’s responsibility to measure this and infuse an equal amount of IV fluid every hour to prevent her from becoming dehydrated.

Any nurse knew within 5 minutes of starting to take care of Mrs. Hardy that she did not have a prayer of getting better. We see it all the time. This is going to be nothing but a long, drawn out, agonizing death. A nurse of some experience once explained to me, without any malice, that morbidly obese patients are like whales and the bed is the beach. The longer they are trapped in bed, the harder it is for them to get back up. In bed they develop sores, their muscles waste away, infections set in and they end up “circling the drain.” So when I heard in report that Mrs. Hardy had been listed for a small intestine transplant, I was disgusted. This would be nothing short of a science experiment. She was already too far gone to get better even if her intestines were intact.

There is something very evil about the whole transplant industry, but I will write about that another day. I decided to make it a priority to get the palliative care team involved in managing her end of life care

Mrs. Hardy’s pain medications had been stopped more than a week ago when it was noticed that she was not responding. Still no change. I got into a difficult spot with the attending physician when, upon being asked by the family, I mentioned the possibility of brain damage. I expected that, after more than a week, I would not have been the first to do so, but Mrs. Hardy’s daughter became alarmed. “Brain damage! No one has said anything about brain damage!” I went with some urgency to try to get the attending to speak with them and was chastised. All of her brain scans were negative for damage. Her condition was related to her blood infections and although it might well be permanent, I should not have said “brain damage.” He was annoyed at this extra task I had now forced on him. I thought about how I could have said it differently, but could not come up with anything.

The palliative care nurse, Susan, came by in the morning to see another patient (palliative care is often busy in the surgical ICU) and I caught her in the hall. I gave her a quick summary and my conclusion that Mrs. Hardy should not be used as a guinea pig. She agreed and asked me to page her so that she could be present for rounds. I did so, and when the physicians were discussing Mrs. Hardy’s case, Susan asked directly if they felt it was appropriate for her to be involved. The attending physician replied very much in the affirmative. Even if everything went perfectly, Mrs. Hardy would still have no quality of life.

*******

The closest thing to stool her body now produced was a greenish brown fluid that drained from a tube that had been inserted through her ribcage just below her right breast. She could wiggle her toes, but otherwise had no use of her legs. She could lift her arms off the bed by herself and so these were tied down to prevent her from disturbing her artificial airway. She was trached and vent dependent (the ventilator hooked up to a tube in her throat) and so she could mouth words, but could not speak. She had received a minimum of pain medicine for weeks because her fentanyl drip had been blamed for her altered consciousness. Therefore it is not at all surprising that as soon as she regained the capacity to communicate she straightaway began to ask for death. She was not my patient anymore, but I heard it from the other nurses. As soon as she woke up she asked to be allowed to die.

I seriously doubt anyone told her that her intestines were gone, or what her prognosis was, but I imagine you can sense these things. I expect it was as clear to her as it was to her nurses that she was not going to get better. Who would want to live in that condition? Why force her?

But it is not so easy. It is not easy for a family that has only been waiting for good news to hear that their loved one wants to leave them. It is harder still for them to give the instructions to let her go. It is hard for the doctors to admit to the family that her case is hopeless and easier for them to talk about what they can still do – “We can treat this infection with antibiotics. We will take her to the OR to clean out her wound. She has responded well to the treatment.”

******

It has been a month now since she woke up and not much progress has been made towards granting her request. A palliative care physician saw her and proclaimed that her poor nutrition status was the underlying cause of her discomfort. She was septic at the time, on blood pressure drips called pressors with systolic blood pressures in the 70’s. I joked with her nurse, “I think she needs some more nutrition Mark.” And we laughed. More seriously then I vented my frustration. This guy should be advocating for her. Adjusting treatments with a view towards maximizing comfort is all well and good, but Mrs. Hardy is in a hellish condition and wants to go now. I heard afterwards that, perhaps under the nurse’s questioning gaze, the palliative care doctor came to the conclusion that Mrs. Hardy was just dying slowly.

Shocking.

He did not feel the need to speak with the doctors or the family about these conclusions.

When a patient wants to die, certain questions have to be asked. Is she in her right mind? If not, we do not listen. Is she saying this because she is in pain? If so we have to get her pain under control first. Is she depressed? A person who is depressed is not in a good state of mind to make decisions about ending her life. Time for a psych evaluation.

Psychiatrists tend to stand out on the ICU. They tend to be disheveled and quirky and oddly dressed. Once I saw one come to work in her pajama bottoms. The one that came for Mrs. Hardy had untamed white hair and wore an old suit. Other nurses told me he made them nervous. After seeing Mrs. Hardy, he called for her nurse –it was Lynn today. He began to speak with Lynn at some length about Mrs. Hardy’s emotional state. Lynn cut him off. What was the use of talking about her emotional state? What difference did it make? Lynn was done thinking about her emotional state. Mrs. Hardy wants to die and everyone is ignoring her. What will that do to her emotional state huh? During their conversation I was making bets with the other nurses that all that would come of the psych evaluation would be that Mrs. Hardy would be placed on suicide precautions. We had just seen this with another patient. Suicide precautions means a sitter at bedside 24/7 to make sure the patient does not harm themselves. I think the psychiatrists think they are doing a good deed by providing the patient with some company in this way, but sitters are usually no company at all. They just turn on the TV and endure the boredom. You cannot even untie the restraints.

Susan, the palliative care nurse came by in the afternoon. I mentioned the psych visit and she looked in the chart for his note. He had recommended antidepressants, but Mrs. Hardy has no gut to absorb them with anymore and they do not come in IV form. “These Psychiatrists are all useless.” I say to Susan. “Do you know that everyone in this hospital says that?” she replies with some surprise in her voice. Lynn tells her that she spoke with the family on the phone and told them Mrs. Hardy was asking to die. “Is she back to talking like that again?” was the reply. “What do I say?” “Tell them it is more and more often.” Susan says. She complains that the doctors are not telling the family the hard truths. “I really feel like we are just torturing her now.” She says.

******

Mrs. Hardy was only my patient twice - both times before she had awakened. I see her sometimes for turns though, since she is one of the larger patients on the unit and changing her bed sheets is a four person job. One of these times sticks in my memory.

I had arrived first in the room and stood on one side of the bed with my isolation gown and gloves on. Her nurse, named Hope, stood on the other side. We needed two more people to start. Seeing us, Mrs. Hardy started to mouth words urgently. It is very hard to read lips and most of the time the patients are either mad or unable to adjust to their circumstances. A lot of time can be wasted trying to figure out what they are saying and often nurses do not bother. We know they are saying “Don’t turn me! It hurts!” But we have to do it anyways and we don’t have to convince them first. All four of us will be having other things to do after this. We just have to get it over with.

There were only two of us though and I do try to be above average in making an effort. It looked like she was mouthing, “I want do die,” so I repeated those words back to her. Hope leaned over “You want to die?” it was something else “I want (something)” over and over. “You want water?” She does, but that is not it. She knows she can’t have any. “You want something for pain?” No. “You want to change your position?” No. Hope figures it out, “You want to go outside? You want to go outside. Well Honey, nothing is stopping you, go right ahead. I won’t stop you. The only problem is I can’t do anything for you. I am not allowed to help you.” Hope is not trying to be cruel, she is just searching for the right words to explain that this is not a request she can consider and she knows there is no one else Mrs. Hardy can ask. In the end, Hope can’t be bothered with things like this. It is not her job. I think of how her words might sound to Mrs. Hardy and try to change the subject. “Good thing we did not turn off the vent.” I joke. Hope replies that she was saying she wanted to die earlier though. Mark and the tech arrive now and want to know what the joke was. I start to explain, but then I stop myself. This is probably not so nice for Mrs. Hardy’s ears either. I want to redeem myself. I look into her eyes and start to talk to her. “We are going to turn you now Mrs. Hardy. We will try to be quick.”

It is hard to explain the agony a turn can be for an ICU patient. Lifting one finger hurts them. Hope hands me the left arm (I am on the right side of the bed) and the tech grabs her left leg and we pull. Mrs. Hardy resists and we pull harder. When we have her halfway over, Mark and hope pull on the sheet beneath her to rotate her hips farther. Mrs. Hardy can reach the right bedrail now and hangs on as best she can to help us. She is frantic from pain (what does it feel like to be turned on your side when you just have a big hole stuffed with bandages where your guts once were?) And she can barely breathe in this position. Her face turns bright red and then starts to go bluish. “We are almost done Mrs. Hardy. Hang in there.” She flails around as much as she can, but she is very weak, she cannot do very much. Hope finishes wiping her back down and she and Mark begin to thread the roll of new sheets and absorbent pads under her various tubes and wires. I bend down a little to look into Mrs. Hardy’s eyes. “How are you doing Mrs. Hardy?” Her face is scrunched up and her eyes full of anguish. “I’m scared! I’m scared!” she mouths quite clearly. I see that she is talking about more than just the turn. This is her life and it is unbearable and there is no escape. “You’re scared,” I repeat, partly so the others can hear what she is saying. “I understand,” I say, “You are in a very tough situation Mrs. Hardy. It must be so hard.” I feel I have offered her something by saying this, though it may be precious, pathetic little. At least I am listening. At least someone understands her and feels for her if only just a little bit. Why say it will all be okay, when it won’t and it isn’t? How lonely it must be. Everyone else can pretend, but Mrs. Hardy has to experience it all - helplessly and all alone.

******

It becomes more and more complicated the closer you get to it. The next week I catch Susan, Mrs. Hardy’s palliative care nurse, as she is sitting outside her room, reviewing her chart. I ask her what is going on and she tells me she is working on meetings with the family. “Any chances of them letting her go?” I ask. “Well she does not want to die, so withdrawing care would be unethical,” comes the reply, a gentle chastisement, “but we are trying to give them a more clear sense of what her real situation is, and maybe we will be able to place some limitations on her care.” This would mean stipulations like ‘no CPR’ etc.

Everyone wants to get better. Even in the course of our normal lives we are generally dissatisfied with today and hoping for a happier tomorrow. Mrs. Hardy does not want to die. Of course not, she wants to get better. So withdrawing care is out of the question, but then she is not going to get better. In the best case, she will never get out of bed again. She will perhaps go to a skilled nursing or long term care facility until she is overcome by infection. She will be in and out of the ICU until she dies.

Would it really be unethical to withdraw care? I am not so sure any more. I have no urge or eagerness to go into Mrs. Hardy’s room and turn off her machines, but when you consider the resources that are being expended to keep her alive in this state it is staggering. The bed in the ICU alone is somewhere between one and two thousand dollars a day. Then there are the doctor’s fees, fees for every surgical procedure, every x-ray (at least one a day), every scan, and every consult, on and on. This has been going on for several months now and Mrs. Hardy is not going to get better. As nurses we do not have to worry about the expense of it all, but if you think about resources as being limited instead of unlimited, is it really the best decision to expend so much to achieve so little? And if the family really had to pay for it all, would their psychology not change? We spread it out with insurance costs. We give perhaps a quarter of our income for health insurance policies that often do not even cover our day to day expenses. What are we paying for? We are paying for Mrs. Hardy’s care, make no mistake about it.

We are trapped by technological advances. If you can do something, who will decide whether you should do it or not? The doctor? The family? No one wants to say “no,” so we do everything regardless of the expense and the consequences. Would it really be unethical to stop Mrs. Hardy’s care? Maybe not, but I will not be the one to stand up and say so. What fault does she have? She seems to be a nice lady.

******

The following week my patients are Mrs. Hardy’s neighbors. They have the same hard-to-treat bacteria that she does, and since we are trying to stop it spreading around the unit, the nurses for these patients are not supposed to go into other patient’s rooms and visa-versa. This week I visit with Mrs. Hardy a few times.

As I enter her room she holds out her hand and I give her mine. “Are you tryin to get yourself a man there?” jokes her sitter, a short middle aged woman with obviously limited mental capacity. The sitter seems to see Mrs. Hardy almost as her doll or her pet and talks at Mrs. Hardy without being concerned about her true reality. This is quite common actually – who really wants to think about it too much after all. I ask Mrs. Hardy how she is doing and acknowledge how hard it must be. She seems to appreciate this. She rolls her eyes slightly when the sitter mentions her family. They are probably as unreachable for her as anyone else in some ways. As I look at her, I am thinking about my writing. Should I tell her about it? Would she want to know? Maybe it will be comforting for her to know. “Mrs. Hardy,” I say, “If someone could tell your story, would you want it to be told?” She lifts her head off the bed and nods emphatically (she is on the vent today, so no talking). “I am trying to write about it. I will try.” I say. She squeezes my hand.

The next day I visit with her she is breathing on her own. I decide not to say anything about our previous conversation. I am not sure if she even recognizes me or if she is simply pleased to have a visitor. She is trying to say something. I put her speaking valve on her trach. “Please give me water! Please! Just a little! It won’t hurt! Please!” Her pleading is like that of a scared, desperate child’s “I’ll have to check with your nurse.” I answer dutifully and I start to feel trapped in a way one often does as a nurse. I start to regret having extended myself. There will be no end to this kind of thing. But I look around the room and see some swabs. Mrs. Hardy is right; a little water will not hurt. I soak three of the little green sponges-on-sticks under the faucet in her room and bring them to her, holding them to her mouth so she can suck and chew the water out of them. She thanks me profusely and then asks me urgently to call her son. She tells me that there are important papers she needs to tell him about. Most likely, she has already told him many times and there will be more opportunities as well. I will not bother him. If I was her nurse, I would mention it to a family member when they called to check. Mrs. Hardy’s family does call at least once a day. “I will let your nurse know.” I assure her. Mrs. Hardy fades. She stares blankly into the room, overwhelmed with fatigue and hankering, she drifts slowly towards sleep. She is asleep most of the time. I forgot to tell her nurse about the papers.

******

A student nurse, named Joe, who has taken an externship, is assisting Mrs. Hardy's nurse today. At one point he gets up from his chair and moves a few feet to the entrance to the room. I observe him talking with her. “Just relax Betty…You can’t relax?... What’s wrong?... Tell me what the problem is and I will help you.... You can’t tell me?... Well how am I supposed to help you if you can’t tell me?.... I can’t help you if I don’t know what the problem is. I want to help you Betty, but you just need to relax. When you are ready to tell me what is wrong, I will come back and help you.” Joe is new and seems to feel he has discovered something profound – Mrs. Hardy really needs to understand how she fits into his world. Then he will be able to give her what she needs and she will also not bother him unnecessarily. Will he spend the rest of his nursing career refining this philosophy, or will something touch him more deeply one day?

Mrs. Hardy’s nurse, John, asks me to come and assist with a cleanup. He thinks she may have had some stool. What remains of her large bowel is not attached to anything, and she has stopped even passing mucous months ago, so this is probably not a good sign. As we get ready to turn her, Mrs. Hardy becomes agitated, bracing herself for the agony of yet another turn. “What are you doing? How long will this take?” she asks urgently. As we pull her up onto her side she yells, “Oh Lord! Please help me Lord!” She calls out, “How close am I to death?” and “How much longer do I have?” and all we say to her is that we will be done soon. We are focused on the puddle of blood that she was lying on. It is about two cups, bright red and mixed with mucous. It looks like Jello in places. We start wiping it off of her thighs and buttocks while John calls the resident to see. The doctor explores the situation, provoking more protests from Mrs. Hardy. We do not tell her what we have found, although she can probably figure it out. Why give her more bad news? We finish cleaning and change the sheets. The doctors will stop her heparin drip. Apparently this has happened once before. The heparin is used to stop more blood clots from forming in her large veins, but she will have to do without it now. Profuse rectal bleeding trumps DVTs today.

******

After all this time Mrs. Hardy is still a “full code.” She has no advanced directives in place that would limit the measures that will be used to “save” her when her time of death arrives. By using pressors we can probably give Mrs. Hardy a few more weeks of suffering. If there was someone who could tell us that we did not have to use pressors, Mrs. Hardy would probably die in a few days or so. When the time does come we will probably push an amp or two of epi and atropine and maybe do a few cycles of chest compressions, but this will be mostly so that we can say we did it all. There will not be much point to it. Or else perhaps the family will finally relent at the end. One of my nursing preceptors used to say, “I hope my family does not love me this much.” Yes indeed. I have not seen Susan, the palliative care nurse, on the unit for the last couple of weeks. She probably reached a stalemate with the family and will probably be back around closer to the end. Come to think of it, I have not seen the family for weeks now.

This week my patients are not on the same special isolation precautions as Mrs. Hardy is, so it would be against the rules for me to go into her room. If I did, I might bring her bugs back to my patients. I ask her nurse, P, if she is still waking up, and she says that she is. I am friendly with P, so we chat about whether it is better to live in the city or the countryside as P goes into the room to fix Mrs. Hardy’s arterial line (A-line). P has a strong Chinese accent, and feels more at home in the city. The people in more rural areas make her uncomfortable and she asks me what I think about it. As I answer (somewhere between the city and the countryside, but definitely not the suburbs would be my preference), I notice there is no longer a sitter in Mrs. Hardy’s room.

Mrs. Hardy has an A-line in her left radial artery (left wrist) which is used to constantly monitor her blood pressure and also as an easy source for blood samples to send for labs (at least once a day). A-lines can last anywhere from a few days to a week or two before they need to be replaced. Mrs. Hardy’s is now positional – if her wrist is not flexed in the right way, the blood pressure does not read. P moves Mrs. Hardy’s wrist restraint onto the palm of her hand, loops it over and reties it so that Mrs. Hardy’s arm is slightly twisted with her palm facing up and her hand pulled back. This works for the time being. The alternative would be to take this one out and have the doctor’s try for another one.

As P ties the restraint, Mrs. Hardy opens her eyes slightly, as if from a deep sleep, to see what is going on. After a moment she closes them again. This, apparently, is what P means when she says Mrs. Hardy is still waking up. It is all so normal for us.

******

Mrs. Hardy now has three types of virulent bacteria and two types of fungus in her blood as well as in her wound, lungs and bladder. Essentially, her body has already started to rot systemically. She is also rapidly developing contractures. Her right hand is bent at a right angle at the wrist and at the fingers so that her finger tips are almost touching her forearm. Her elbows and knees are also folding up. She still “opens her eyes to command,” which means if you say, “Mrs. Hardy! Open your eyes!” she does so. She is otherwise unresponsive.

This week is the first week of the year for the doctors. The interns are now fresh out of medical school and the residents are fresh out of their internships. I listen to rounds to see how Mrs. Hardy’s case will be presented to them. It is acknowledged that her case is hopeless and that it would now be a good time to discuss limits on care with her family. It is not mentioned that the same has really been true for the last three months. None of the efforts of the palliative care team are mentioned. Mrs. Hardy’s desires regarding her own care are not discussed. There will be a family meeting in the afternoon. The SICU attending (head physician), Dr. Lew, expresses that he is personally uncomfortable with the principle of withdrawing care, but feels that not escalating care would be appropriate at this time. The plastic surgery team has been Mrs. Hardy’s primary service, and they will also need to be present at the family meeting. Dr. Lew questions the plastics resident, who has come by for rounds, to see if everyone is on the same page for the meeting.

They are not.

The plastics resident announces that her attending has taken a “special interest” in Mrs. Hardy. They want to give the antifungal medications a week to work and they want to try a third skin graft. The second skin graft turned to mush in two days and Mrs. Hardy’s abdominal cavity is full of slime. There is no chance that a third one will be successful. The skin for the graft would be harvested from another part of Mrs. Hardy’s body, which would leave another painful wound. Why put her through another operation? The resident is questioned and responds philosophically. She speaks about offering all possible treatments and not abandoning hope. I find myself wondering what the real reason is – are they looking to send out more bills? Do they want a safe practice case for the beginning of the year? I do not understand it, and I am not alone, but then that is nothing new either.

From the beginning, there has been a quiet consensus among the nurses that Mrs. Hardy should be allowed to die without all of this torture. We now speak about it openly. It is really time to let her go now. We share what we know about what is going on. The family is the main obstacle at this point. While it is true that they have received conflicting reports from the doctors, the feeling is that they have been told directly enough and often enough about what is happening that they ought to understand their mother is dying. Even the plastic surgery attending is said to have told them months ago that there was no chance of her getting enough nutrition to enable her to heal. Mrs. Hardy’s children have not come to see her for three weeks (she was talking back then). They are still waiting for her to get better and come home.

Susan, the palliative care nurse, arrives on the unit mid morning to prepare for the family meeting. “You’ve got to set them straight, Susan.” I say, lightly. I spoke too softly and she does not hear me properly, “What did you say? I’ve got to castrate them?” I laugh, “That’s not what I said, but I like that better.” Susan plans to be as direct as possible with the family. She says that the oldest son gets it, but that the younger son and daughter (youngest) do not.

After the meeting she feels she has reached the daughter, but the younger son remains adamant. He claims that before all of this started Mrs. Hardy said she would want everything possible done. What are her wishes? She has said different things at different times. To the nurses she has spoken often of her desire to end her suffering, but she has not spoken to her family in this way (some would say because of being intimidated). She has also been more inconsistent with the doctors. The differences may be attributed to the amount of time we spend with her as nurses. We are also the ones who inflict the most pain on her during her care. We are the ones who turn her and clean her. For now, Mrs. Hardy remains a full code.

Later in the day, the plastic surgery resident returns to talk with the new ICU fellow about a skin graft (fellows are senior to the residents and junior to the attendings). The fellow reiterates his misgivings about performing this procedure at this stage of illness. The plastics resident repeats the philosophical line she has received from her attending. The fellow shrugs. He disapproves, but it is not his call. He does put the procedure off though. Mrs. Hardy is on Levo, which denies peripheral circulation – the graft would not have a chance. “When she has been off pressors for a couple of days, you can take her.” Well spoken. Procedure blocked.

******

On rounds the doctors discussed new developments: her liver function is down and her kidneys are failing. She will need dialysis soon. The resident mentions her plan to call for another family meeting to talk about whether or not to do dialysis (a very significant decision and possible turning point), but the attending (Dr. Pock, a different one than last week) stops her. “Didn’t you just have a family meeting a few days ago? The family said they wanted everything done, so go ahead and get a renal consult.” The residents and fellows shoot uncomfortable looks at each other. “I…I just did not know how aggressive you wanted to be…” says the resident. “Me? What do mean by that? This is not about what I want.”

I go around the unit telling some other nurses about the incident. “Oh! Dr. Pock is the worst, I hate him!” says Lori, one of the most senior nurses on the unit. “He doesn’t care about the patients. He just comes for rounds and then he goes away for the rest of the day.” Lori and another nurse talk about how they have heard that the son who is against limiting Mrs. Hardy’s care is living in her house. “Oh, now it all makes sense, now I understand everything.” The implication being that the son is benefiting financially by keeping Mrs. Hardy alive.

I ask Susan from palliative care about this, but she does not agree. She has been working closely with the family. Mrs. Hardy has been living with her youngest son, and since he has been closest to her, the other siblings are deferring to him. Susan says that he is just not very intelligent and cannot comprehend the reality of the situation. He also has another family member that is very ill and Susan thinks he is just not able to face it all yet. It is an interesting way to plan a patient’s care. The son cannot even bring himself to visit, but he cannot let her go either.

The sense of discomfort on the unit continues to heighten. Normally callous nursing assistants talk about how sad it is to do this to Mrs. Hardy. The wound care nurse, an old hand who does not usually stop to talk, asks me about whether Mrs. Hardy is still a full code and what the plans are for a family meeting.

Laura, Mrs. Hardy’s nurse today, asks me for help with a turn. Mrs. Hardy’s eyes are closed. Her complexion is now dark brown, as if she has been in the sun all summer. I touch Mrs. Hardy’s eyebrows lightly and ask Laura “Is she still there?” “Just a little,” she replies. As we turn her, Mrs. Hardy opens her eyes. She seems to be in less distress now, as if her soul’s connection with her body is loose and slackening. It would be easy to ignore her and assume she is not able to understand us. She does not even move her lips anymore. As I look into her eyes, her hand rises slightly and I take hold of it. The look I see feels like recognition and gratitude. As she stares out from the grave, I feel glad that I can still reach her, but then I start to have doubts. Her eyes hardly move. How can I know her internal state? Perhaps I have it all wrong. Perhaps she did not lift her hand at all. Maybe it was just an accident of the turn. I put her hand down, but after a minute she lifts it again, reaching out for me. I take her hand again and look into her eyes. She gazes back with sad affection. I have words to say to Mrs. Hardy, but I feel awkward saying them in front of Laura. I do not know her well, and I am not sure if I will make her uncomfortable.

But there will not be another opportunity. This moment will not return. I say the only comforting words I have, “It will not be much longer now Betty.” She continues to look into my eyes. After a few moments I excuse myself and go. If I had a better heart perhaps I would stay with her longer. Perhaps I would also push my kids on their swings as long as they wanted. There are so many Mrs. Hardys. I do not have enough for any of them.

Outside of the room, Laura asks me what I think of all this. Laura is a young nurse, well seasoned on the SICU, but still bright eyed and enthusiastic. I have avoided her a little because I have not wanted to trouble her with my jaded mentality. (In nursing school some of the professors talked pointedly with me about “contagious bad attitudes,” but what did they offer us that would have prepared us for these situations? Nothing. They could not even acknowledge the existence of such cases.) I tell Laura that I think it is wrong and it makes me angry. She agrees, “I cannot Do this.” She would prefer to take care of patients she can actually help.

The renal doctors evaluated Mrs. Hardy and decided that she did not need dialysis yet. The next day on rounds the resident begins her presentation, “…status post botched hernia repair…” Dr. Pock stops her again, “I want you to try very hard not to use words like that,” he says sternly. Dr. Pock goes into the details of the case and pushes her to properly understand the disease process. This is a teaching hospital and she is here to learn. He probably does not want to waste time on things he cannot change.

I assist with another turn. Mrs. Hardy is more distant today. She stares out blankly into the room, her consciousness absorbed in the work of breathing. The flesh exposed by several large skin tears has turned the color of turmeric with a green tinge on the surface. Fluid oozes out through the many holes created for various drains as well as the huge open cavern of her abdomen. The room is filled with a foul, musty odor. Labs show her blood is becoming acidic. The end is near.

Cells produce energy by passing ions back and forth across the membranes of mitochondria. The process requires the environment inside of the mitochondria to be more acidic than it is on the outside. When this balance is upset, the cells cannot produce energy and they die. When they die, they rupture, spilling the acid contents of their mitochondria into the blood stream, further increasing the acidity of the blood. This manifests as sepsis or septic shock. In Mrs. Hardy’s case, it will not be reversible. Her infections are too extensive and are no longer responding to antibiotics or antifungals. As the cascade gathers pace, we can turn up the pressors to buy a few more days or hours. That is all.

The fellows come by towards the end of the shift. The day fellow is handing off to the night fellow. They are have just started working together, but clearly like each other. They pause to discuss the situation. They know that she will die soon and are concerned that Mrs. Hardy is still awake. They want her to get more ativan. “You know what I’m saying? She needs a forty ounce bottle and a two-by-four.” When they are gone, I ask her nurse, Bea about it. “They want you to knock her out?” Bea is an orthodox Christian from Kenya. “Yes, but I do not understand why. She is not agitated.” I agree. The orders for ativan are PRN (as needed) and are left to the nurse’s discretion. Bea decides not to give the ativan. The night nurse may have a different opinion.

******

Mrs. Hardy had had three dialysis treatments over the last five days to correct her critical metabolic acidosis. This had brought her back from the brink, but she continued to decline slowly and would have required continuous dialysis. “How aggressive do we want to be, considering her condition?,” someone from the renal team had asked.

Susan had gone on vacation and Debbie, a bolder, more experienced palliative care nurse, had taken over the case. She had determined to put an end to the farce. There had been a family meeting the day before. Lori was Mrs. Hardy’s nurse that day, and she made Mrs. Hardy’s children stay in the room with her for the dressing change - just before the meeting. They were shocked apparently. “This is never going to heal. Do you understand that?” Lori told them. Debbie caught the attending before the family meeting and explained things to him (she told me the story herself). She told him that the family needed to be told what care the doctor felt was appropriate, not asked what they thought was best. In the meeting, she told the family that this meeting was not going to be about their needs, like the last two had been, but was going to be about Mrs. Hardy’s needs. The son would just have to figure out where he was going to live, and what to do without that check he was getting (Debbie confirmed this as being part of the problem). The family agreed to make Mrs. Hardy a DNR without escalation. Lori had wanted to withdraw care right away, but Debbie was concerned that pushing too hard might have undone the progress they had just made. Mrs. Hardy had already had to wait three months. Another day would not be the worst outcome.

As the day passed Mrs. Hardy’s systolic pressures dropped into the seventies and her heart rate slowed to the forties. Everyone kept asking about the children. The oldest son and the daughter had said they would return, but they did not show. The younger son was going to stay away. Mrs. Hardy was dying very slowly, all alone. I left at 7:30, expecting her to pass during the night.

The next morning, Mrs. Hardy’s systolic pressures were in the sixties and her heart rate was in the 30’s. Most people’s hearts would have given out by now. The night nurse related that Mrs. Hardy had opened her mouth to allow her oral care upon being requested to do so. Her eyes were half open with almost no movement. It was hard to tell if she could see or not. Her children had decided not to come. As I stood at the entrance to her room, pausing to watch her and the monitor, Laura came up behind me. “Did you hear what the daughter said? ‘Go ahead and pull the plug!’ If I could shoot someone right now…, but I do not have the time.” Laura was taking the charge nurse role for the first time this week. She checked on us every two hours.

Mark was taking care of Mrs. Hardy again today. The children had told him they were ready for care to be withdrawn, but they had not spoken with the physicians. The new residents were not sure if the attending needed to speak with the family, and had put it off for rounds. On rounds the attending instructed the resident to call the family for confirmation, but this was put off until after rounds. Even after rounds, the resident could not be bothered. There were a few sick patients on the unit that needed attention, and it was clearly a low priority for him. Mark had taken care of Mrs. Hardy more than any other nurse on the unit and his frustration was evident. He kept asking the doctors to call. They kept putting him off.

Debbie arrived in the afternoon. She had had other engagements in the morning. She got on the phone to call the children right away, fielding two calls at a time from the siblings. She caught the attending as he was walking by and put him on the phone with them. We would turn off the Levo and take Mrs. Hardy off of the vent. Mark thanked Debbie for her help. Debbie joked about killing patients off, showing awareness of possible other perspectives on what she was doing. “This should have been done a long time ago,” I said, not that she needed to hear it from me.

Mark started an ativan drip. Debbie grabbed Joe (the extern) and a brand new nurse who had just started orientation on the SICU to be present in the room. Even with everything off, it still took a couple of hours. About three quarters of the way through, I came around the closed curtain into the room. Mrs. Hardy, now off the vent, was taking agonal breaths. She did not seem to be in pain. The room was dark and the new nurse was standing close to her face. “Has it always been that color?” she asked. Debbie replied that she was getting a little cyanotic at this point. I did not disapprove, but thought about how different it would be if family was present. Her lifeless body was still in the room at the end of the shift. The night shift did the tagging and bagging. By morning there was another patient in the room. And do you know what? His story was not too much different from Mrs. Hardy’s.

Quadrapelgic for Life

2009-03-01T04:53:00.001-08:00

“Do you have any sensation in your body?” I ask. Mr. Murphy is a little annoyed by the question. Does his nurse not know anything about him? “I am a Quad,” he mouths (he is on a ventilator, so he cannot speak). “I know that,” I say, “Some quads have sensation.” This is apparently a new piece of information for Mr. Murphy and he pauses, pleased, to chew on the new bit of knowledge. ‘What would that be like? Would it be better or worse?’ I imagine he was thinking like that.

Mr. Murphy was a patient that other nurses tried to avoid. Unlike most ICU patients, he was very sharp mentally. His situation was so frustrating to him that it had driven him to the edge of madness. When you took care of him, his lips would run a mile a minute as he told you urgently whatever was on his mind and especially what he wanted you to be doing. You could not understand any of it, and I think the other nurses found this disconcerting. He would generally ignore requests for yes or no answers, so you were left to try to figure it all out on your own. Every move you made seemed to increase his frustration.

I stopped him and told him that I wanted to do what he wanted, but could not follow him at all. In this way, I extracted a few begrudging yes’s and no’s. When he found me responsive to these, he slowed down a little and I was able to catch a few words here and there.

He wanted a speech valve for his trach so that he could talk. I told him that valves only worked for patients who are not on ventilators. He insisted emphatically that that was not the case and that he had had one before. I agreed to call speech therapy. The answer came back as I expected – no such thing existed. I told Mr. Murphy. “Thanks for trying,” he mouthed.

He could not even talk. He was helpless. He could only feel his head, and on the back of his head was a large bed sore which had just been cleaned and debrided. A white circular area the size of a yarmuka (about 5 inches in diameter) was his skull. This was the result of neglect.

Mr. Murphy was the poster child for “I would not want to live like that,” but he did not seem to know it. He did not ask for death and he did not seem interested in it (not that I asked). While I still think that, in similar circumstances, I would want to be allowed to go, I did not feel the emotional resistance in myself that one often feels when taking care of hopeless cases. Mr. Murphy was psychologically intact, and I guess this made all the difference.

As the shift went on, I took opportunities to talk with him. I could not catch every word, but sometimes I could get enough to follow what he was saying. I tried not to ask him to repeat himself too much.

How had he been injured? He had had a minor neck surgery and had fallen just afterwards. I asked about the specialty hospital where he stayed when he was not in critical care. He shuddered, “A horrible place.” He told me something more about it, but I could not follow. Something about the people there not caring I think. From other sources I heard that his sister had tried to care for him at home and that the ulcer on his head was from that time.

I asked him what his work had been. He had worked in corrections as some kind of counselor. Did he like it? “Yes. I was good at it,” his silent words were full of feeling and memory.

As I excused myself, he thanked me, “It is not often….” I could not catch the rest although I have a pretty good idea sadly.

Mr. Murphy’s sister arrived in the afternoon. They were clearly close. I gave them privacy as they talked for an hour or so. What a difference it makes to have someone who loves you in your life.

Nursing on the High Wire cont.

2009-02-19T12:39:00.000-08:00

The respiratory therapist tried for the blood gas on the other wrist. Another RT was getting ready to try when she hit the artery and the syringe began to fill with blood. The MICU resident arrived. He examined the patient. Was this CO2 narcosis? I brought up the issue of Mr. Jones’ code status. Was he DNI or not? I had spoken with a different doctor on the phone. The resident went to the computer and found a note from the MICU attending stating Mr. Jones should be DNI, but with what the patient had told me, did that still stand? Was the patient of clear mind when I spoke to him this morning? I assured the doctor Mr. Jones had had none of his current symptoms when I had spoken with him. Meanwhile the respiratory therapist was trying to ask the doctor to put the order for the blood gas into the computer. The machine that runs the lab test is hooked to the computer system and a physicians order is required for running a sample.

The MICU doctor was clearly flustered. He went to the Bipap machine to check the settings and went to the computer to check Mr. Jones’ labs and orders. He wondered out loud if this was being caused by a brain stem lesion. He wanted a stat head CT. I informed him that patients cannot travel on Bipap because the machines do not have any batteries. He was doubtful. The respiratory therapist confirmed this. He was still doubtful. He checked the Bipap again and examined the patient again.

Meanwhile the respiratory therapist was becoming exasperated. The doctor had said he wanted a blood gas over half an hour ago, but he had yet to put the order into the computer. The RT was turning the syringe gently in her hands, trying to preserve the sample, looking to get a word in edgewise to ask the doctor again to put in the order. He was not paying any attention to her. I looked around for more experienced nurses who would know how to put in a verbal order, but did not see any. I would probably be able to figure it out myself, but this did not feel like the right time to try. Finally I stopped him, “Doctor, please, both of us are a little new here and we are really unable to run the blood gas without an order.” He snapped out of it and sat down to put the order in.

The charge nurse had taken over my other patient and had gotten him some pain medicine. Anesthesia had now been paged multiple times both for the epidural that needed to be hooked up and for Mr. Jones who might be needing an emergent intubation. They had arrived on the scene now and wanted to know whether or not to set up shop. The MICU fellow and another resident had also arrived. I told them all about my morning conversation with the patient. The reaction was the same each time. At first they would say, “then he should not be DNI any more,” but after a few moments they would back track. It did not feel like they did not trust me, but that would have been reasonable since I was meeting all of them for the first time. Maybe the thought of Mr. Jones dieing on a ventilator was unappealing. Maybe the thought of explaining it all to the family was discouraging them.

They wanted to get in touch with the son, but he was not picking up on either of the numbers we had for him. There was not even an answering machine. The blood gas came back. PH 7.069, pCO2 123 – it was worse than I expected. Another ten minutes and Mr. Jones surely would have coded and died. If not for the DNI status, they would be intubating Mr. Jones now, but the doctors were still unsure what to do. The senior anesthesiologist was on the scene now. His resident explained that the MICU doctors were unable to decide if Mr. Jones was DNI or not. “Well they better hurry up and decide or he will end up DRT.” I do not know what DRT means, but I got the gist.

The fellow called the attending. Final answer – DNI. In the back of my mind I thought about how disturbing this would be for me if I was more attached to what was going on. Mr. Jones had told me clearly that he did not want to be DNI and the doctors were ignoring me even though I had told them about it before all of this had happened. I tried to keep perspective. What if Mr. Jones was intubated and became permanently vent dependent. He would not have wanted that either. “I am okay either way,” I told the fellow, “but his mind was clear this morning.” I did not want her to think I had some kind of agenda.

I turned to the charge nurse who was only one year out of school. She had caught the end of the conversation. I explained they were keeping Mr. Jones DNI. “That’s not what I would want for myself!” she blurted out. “I am trying to stay detached,” I said. The respiratory therapist was also upset. Should I make a scene and try to force the doctors to intubate? I was not feeling it.

Mr. Jones started to have moments of voluntary movement. He would get a few muffled words out from behind the mask and then go back into his trance. His arms were getting softer also, although they were still stiff. Over the next hour he returned to his baseline condition. A little good old-fashioned vigilance had saved the day. Whew.

When Mr. Jones could understand me, I told him that he had almost died and that he needed to tell the doctors what he had told me this morning. I told him that I had told the doctors about our conversation and that they were not going to listen to me. I did not elaborate because I did not want to disturb him unnecessarily. He seemed to grasp the situation well enough from what I told him. He wanted the mask off again. I told him that was not an option.

After another hour we took Mr. Jones up to the MICU. I checked his orders on the computer the next day. He had been intubated at 8:00 pm. I suppose I should have felt happy about that.

After two weeks, Mr. Jones was sent, still on the ventilator, to the MICU of a long term care facility.

Nursing on the High Wire

2009-02-11T14:57:00.001-08:00

Resistance is Futile

2009-02-08T04:48:00.000-08:00

The tipping point came for me while observing the facility’s interdisciplinary work session. The head nurse, a social worker and a psychiatrist were having their regular meeting where they went through the patients cases and discussed plans of care. In the middle of the presentations, the social worker brought up the issue of a request for transportation from one of the patients. She had a court date today. She was trying not to lose custody of her children. She had missed a previous court date because she had been in this facility. If she missed this one, that would be it.

Less than five minutes were spent on the issue. The first reaction was that it would be a headache to arrange for transport. The psychiatrist then asked the social worker about what she thought the patient’s capacity to care for her children was. The patient was challenged just to take care of herself, “She does not need those kids.” And that was it. No transportation would be provided. Next case please.

When the meeting concluded I sought out my clinical instructor. I told her what had happened. She told me I had misunderstood. She would arrange for me to meet with the social worker so that I could ask her about it. I flatly refused. I was sure I had not misunderstood and did not think the social worker would appreciate being called out by a nursing student. I saw it as an attempt by the instructor to put me in my place. No, I would not do it. I did not agree. I told the other students about it at the group meeting at the end of the day. It raised a couple of eyebrows, but no one seemed particularly concerned.

I was without support. I spoke with my nursing school advisor. She seemed to be somewhat sympathetic, but was not really open to hearing about my concerns. As a nursing student, I had no standing. I had no training or experience that qualified me to evaluate or comment on the workings of a mental institution.

I did not expect to change anything at the mental hospital. I just wanted to find someone I could talk with about it. Someone who could accommodate what I was seeing and talk with me about how to get through it all.

I could not contain the urge to resist. I was not getting any traction on the issues, so I fought against a grade on a paper that had been assigned as part of the clinical coursework. This way I would at least have a voice. The very premise of the assignment had offended me. I already had a BA with a major in psychology. In all the time I had spent in psyc undergraduate courses, I had not had any contact with patients of any sort. The reason was clear; qualification to offer counseling came on the level of graduate study. As nursing students, we had one psychology class and one clinical during the entire program. On the first day at the mental institution, I had been sent alone into a room with two inpatients and told that I should have a therapeutic interaction with them. I decided that it would be most therapeutic if I did not allow either of them to come between me and the door to the room.

The paper assignment was to transcribe a therapeutic interaction we had had with a patient and evaluate it according to the therapeutic principles we were learning. I wrote the paper on my own terms. I expected a C, but I got an F. I complained to my advisor. Maybe I was being punished for making trouble. My advisor was not very enthusiastic about the whole thing, but she set up a meeting with the director of the nursing program at the university.

I liked the director of the program. She was friendly to me. Her background was in pediatrics and I had sought her advice several times on how to care for my recently born son. My fantasy was that she would ask me privately what all this was about. She would listen and understand and would take steps to somehow at least make the psyc nursing program more appropriate. I was more emboldened when I heard from other students that my clinical instructor had once been the director’s teacher and had told her she would never amount to anything. ‘I am offering a good service to the nursing program and the director will be pleased with me,’ I told myself.

It did not quite go that way. In the meeting, my advisor was asked if she thought the grade was appropriate. “Yes, definitely,” she replied. If she had only told me beforehand she was going to say that, there would have been no need for the meeting. I saw it was hopeless. I accepted the grade. I was again offered the opportunity to rewrite my paper and I again declined. No one could understand why. It seemed lazy-crazy. There was no opportunity to explain myself. All of my anguish about the facility was totally irrelevant. I lost the respect of the director and never recovered it. I moved to the back rows for the rest of my nursing education and kept a chip on my shoulder. It was pedestrian versus SUV, just like I thought it would be.

Visits to Saint Elizabeth's

2009-01-31T05:11:00.000-08:00

Two nine year old boys, inmates of the mental hospital where I have been sent for nursing school clinicals, stand at a counter, waiting for their meds. A male nurse hands each one a small paper cup with a handful of pills inside. The boy on the right puts his cup to his mouth, leans his head back and dumps the pills in. As he is doing so, he looks up and reads the name that has been written on the bottom of the cup. “Hey!” he says through the pills. He brings his head forward and spits the pills back into the cup. “These aren’t mine, they’re Derek’s!” “Well give them to Derek then!” retorts the nurse. The boys look at each other, shrug their shoulders and exchange cups. Bottoms up again; together this time. “Good for you for catching that,” says the nurse.

I mention the incident during the student group time at the end of the day. Our instructor is equivocal: the nurse did not see that the boy had the pills in his mouth. I glance at the other student who was with me at the time, but there is no spark. We remain silent. If their minds cannot accommodate reality, what shall I do? The nurse would have had to go back to the med room to get more pills. He might have even needed to make a note or waste the first set of meds. If the boys were willing to take them, why go to the trouble?

Psyc clinicals are not going well for me. The place was all wrong and it was not because of the patients. I had long ago trained myself to catch and hold the discordant details – things that happen in a moment which do not fit with the plans or ideals but yet are quietly built in to allow the machine to run smoothly. I pay attention because I believe that in these details are the signs and markings of sorrow and oppression. I hear in the distance the chainsaws clearing the rainforests. I see millions of acres of beetle-brown pines and elm skeletons – unmourned. I see busses full of zeks plying anonymously through capitol streets and government torturers making their way home to their wives in the evenings. I see transplant victims begging for death and being ignored. I see a trillion fires burning on the earth, consuming everything until nothing will be left. I want to protest, but what would be the point. It would be pedestrian versus tractor-trailer or worse than that.

Group session with the teenagers. Twenty or so kids sit side by side with their backs to the wall of the large alcove. Two counselors sit by the entrance to the area. The population has some diversity to it, but it is mostly underprivileged young men with anger problems and more privileged girls with self destructive tendencies. The girls are “cutters” – they cut on themselves with knives. It is not that they are trying to kill themselves or make suicidal gestures; they somehow find some kind of release through self mutilation. It is a new trend, but there are quite a lot of them.

I am assigned to the room with another nursing student to observe the session. The inmates speak amongst themselves while the counselors talk to each other at great length about their personal home improvement plans and projects. I lose respect for my fellow student as she jumps in to the conversation enthusiastically. The children are being ignored and they realize it. They seem quite accustomed to it.

I look around the room. I overhear a conversation. One girl says to another, “How much do you cut yourself?” The other girl proudly extends her arm, displaying scabby lateral lines from wrist to elbow. “That’s all?” says the first girl disdainfully. She presents her own forearms, showing off fewer, but much deeper scars. The first girl withers. I look back to the counselors and the other nursing student. They are talking about building decks. After another half an hour a writing assignment is given out – a share something about yourself kind of thing. The counselors continue their conversation for another 15 minutes and then we spend half an hour going around the room sharing. They put their hearts into it more than I expected.

Another group session on a different day:
The room is smaller. It is the next younger age group. The counselor is confrontational. It is mostly boys this time. One of the boys has been acting out in the hospital. He is warned that if he keeps it up he will be sent to prison. The counselor tells him that the guards will beat him at the prison. They will put him in a straight jacket and toss him in a van. The guards will beat him in the back of the van all the way to the prison. “But I will complain!” the boy protests. “Who do you think is gonna listen to you? You are a mental patient. The guards aren’t gonna say anything. Do you think they will believe you or the guards - huh?” Translation – if you see a cop, run. Very empowering.

I bring it up at the end of the day, but the other nursing student is full of admiration for the counselor. Someone has to set these kids straight or they will get themselves into even more trouble. I guess that was the thinking. I could not really follow.

To be continued.

A Restraint Free Nursing Home

2009-01-17T05:17:00.000-08:00

We heard from Donna, our instructor for the nursing section of hospital orientation, that there was an initiative to end use of restraints within the hospital. Out of necessity, ICUs were exempt, but the rest of the hospital was currently restraint free. The nursing home that was operated by the hospital had not used restraints for more than a year.

My interest was piqued. As I have mentioned before, I am not very fond of restraints, but they have always seemed an unavoidable feature of the work environment. When things like breathing tubes and feeding tubes are inserted into the body, it is the natural tendency of the patient to want to remove them. Combine this tendency with any kind of dementia, disorientation, or plain disagreement and the situation is intractable. It often boils down to choosing between restraining the patient or letting him starve. You cannot let him starve, so you have to tie him down.

Thinkers who have taken on this riddle tend to recommend sitters. If you can place a person next to the patient for one-on-one observation and guidance, that person should be able to accomplish as much if not more than the restraints achieve. Unfortunately, these thinkers are not nurses, or if they are it has been a long time since they actually dealt with patients. A sitter can really only be effective if the patient is willing to listen. It is not the sitter’s job to watch a patient and grab his hand just as he is about to pull the feeding tube from his nose. Such actions cause immediate escalation and are counter productive anyways. It is a very small percentage of restrained patients that can actually be helped by sitters – those who are forgetful but docile. Even then, to have the expectation that the patient will be watched 24/7 just to stop them from pulling on things is asking quite a lot of an underpaid and unenthusiastic sitter. I challenge my readers to spend just ten minutes in such service. Ask yourself if you could do it for eight or twelve hours at a time.

So how does the hospital manage it? Nursing home patients will be having less technology hanging from their bodies, but they must still have the occasional feeding tube and they will be more mobile as well. You may not have considered this, but people with dementia are not always the most cooperative and if a few nurses and nursing assistants are going to take care of a bunch of residents there needs to be a certain level of routine and order. Residents also need to be protected from each other. “But if they have figured out a way to avoid using restraints, maybe I should look in to working there,” I thought to myself as I wondered what their tricks could possibly be.

The answer came in the next section of orientation when we discussed the use of restraints. Did you know that padded mittens, fastened around the wrist with Velcro, are not restraints because they don’t restrict movement, they only stop a patient from grabbing things? Donna told us that she did not recommend these because they tend to remind the patients of boxing gloves.

If you fasten a Velcro lap belt at the back of the resident’s chair or wheelchair it is a restraint, but if you keep the Velcro in the front where a reasonably able person could release it on their own…it is not a restraint.

Rigid sleeves filled with Styrofoam pellets keep a patient’s arm from bending and thus prevent them from reaching, say, their noses and pulling their feeding tubes. Once called elbow immobilizers, these are now known as ‘Freedom Splints’ (I think they are French) and they are not restraints.

A tray snapped across the front of a wheelchair, which cannot be easily removed by the resident, is also not a restraint provided it is being used for some other purpose. “So make sure you always leave a glass of water on the trays so that you don’t have to count it as a restraint,” says Donna cheerfully. With all sincerity she seems to feel that all of this somehow represents progress.

“Ah…,” I think to myself, a little disappointed but not surprised, “so that is how….you document…. a restraint free facility.”

Oh, and by the way; all of those complications that Medicare will no longer be paying for – you know UTI’s and Decubes etc. – we have almost eradicated them all already.

Cath Lab

2009-01-10T07:12:00.000-08:00

I found shelter from floating for a month or two in the Cardiac Cath Lab. They had just lost some senior staff and needed someone to fill holes while they were training the new people. For the sake of stability, I traded my precious three twelve’s for four tens (shifts a week). I worked in the holding room where I prepped the patient’s for their procedures and recovered them when they came out again. If you are interested we had generally between 20 to 30 or more procedures a day at somewhere around 20K a pop.

About a third of the patients had had heart transplants. These patients get a heart biopsy every week for the first 6 months or so after transplantation. It was a refreshing change to see so many healthy transplant patients leading essentially normal lives, a few of them even ten years out form transplantation. There were also some whose transplants had started to go bad. While still in good health, their terror could be compared to that of a person who has jumped out of an airplane to find the parachute will not open. You cannot get back to the plane and your old heart is in the garbage heap.

The biopsy patients did not need IVs – the tiny pieces of heart muscle were collected with a straight shot down the jugular to the heart. The procedure was simple and low risk and did not require sedation. The patients could come in at 7:30 am and be home by noon if everything went well.

The rest of the patients needed IVs, which gave me the opportunity to brush up on one of my weaker and least favorite nursing skills. I like putting them in about as much as the patients like getting them. Subsequently I have not become very good at it and that does not help matters. For two months I tried for as many as I could and I did get better at it, although Jay (a hard stick) would probably still be better served to ask for someone else.

Recovering the patients was all about pulling out “sheaths” (large bore ‘IVs’ that protect the blood vessels when the catheters are passed through) from necks and groins. One day I may do a post about the built in discrepancies between what is done and what is documented. Sheath pulling will be a classic example – we documented that we were checking the pulses on the patient’s feet every five minutes while at the same time documenting that we were holding pressure with both hands on the groin.

If the patient is nice, holding pressure on their groin for fifteen minutes to stop them from exsanguinating (bleeding out), provides a good opportunity to chat. Most of the patients were focused on getting out of the hospital as soon as possible, so jokes about how they could always stay for the night if they wanted usually went over well. Once I joked like this with a male patient in his early 70’s and his wife. The joke fell flat, but it started a conversation. He had been hospitalized after a cardiac procedure (I do not remember what) and had had a rough time over several months. “It took us a full year to get the sore on his bottom healed,” said his wife. It had been all the way to the bone. Still I was thinking that he was lucky in a relative way. He had returned to his normal life in the end. The odds must have been against him.

But that was just the beginning. His wife began to tell me the story of her bypass (or “cabbage” as we say on the inside –CABG coronary artery bypass graft). There had been a bad batch of heparin or something and of four patients that were operated on that day; she was the only one who had survived. The others had died slowly over months, losing limbs piece by piece on the way. She had lost only one and a half fingers in the end. The doctors had told her never to let anyone give her heparin again. Her face and voice were calm and only a little weary and sad. She held out her hand for a moment to show her missing fingers and I noticed also a metal allergy bracelet. I looked at her face again. Her eyes were big. She was shaking like a leaf.

My Code (final post)

2008-12-31T07:21:00.000-08:00

I go outside of the room to look for the flowsheet. Mrs. Wilson arrived at 11:00 am and it is 5:00 pm now and I have not had time to write down a single vital sign. The charge nurse comes by and we turn to look at Mrs. Wilson’s monitor as her blood pressures go soft and her heart slows. “She is coding again,” I say. “Stop saying that!” he says, but her pressures keep falling and her heart slows to a stop. We call for help, I take up position by Mrs. Wilson’s IV access, chest compressions are started. Maria comes and looks at me, waiting for a task. I make a gesture of writing in the air and she takes up the code documentation again. The charge nurse calls for the second code cart; we have used up all of the meds in the first one (the unit has two for 16 patients).

The code gets up to full speed. One of the nurses asks how many times we are going to do this. “Someone needs to bring the family!” I call out. This time my words find purchase. Eyes turn to the fellow. The rest of the team does not know about our conversation. Will she take this as a challenge to her authority? There is a moment of tension in the room. “It’s alright, go get the family,” she says to one of the techs quietly but audibly. The tech leaves the room immediately. We resume the code. In a minute the daughter returns. Right away, she starts saying “No, no, stop this, stop this.” With a signal from the fellow we stop. There is no heartbeat. Mrs. Wilson is dead. The daughter weeps. One of the nurses turns off the IV pumps. The respiratory therapist turns off the ventilator. The room clears out. The daughter leaves to tell the other family members.

My work is not done. It is time to prepare the body for viewing. Another nurse and I fill three garbage cans with used sterile drapes, packaging, empty syringes etc. Two laundry bags are filled with bloody sheets. I suction the drool from Mrs. Wilson’s swollen, lifeless face and wipe blood from around her mouth. The breathing tube and other lines need to stay in place in case the family decides they want an autopsy, but I remove what I can. I turn off the hissing suction at the wall and toss the canisters, half full with blood and mucous, into the trash.

I want the body to look as natural as possible. A small IV on the inside of Mrs. Wilson’s elbow catches my eye and I decide to pull it. It is a mistake though; blood pours out from the puncture and does not stop. I put a piece of gauze on the site and fold her arm over it to contain the bleeding. We put a fresh sheet over the body, up to the chin, and I leave Mrs. Wilson’s other hand uncovered incase someone wants to hold it.

The daughter returns with two younger siblings, but the site is too disturbing for them. The daughter asks if the tube can be taken out of her mother’s mouth. I explain about the autopsy issue and she brushes it off. “We do not want that.” I find Dr. Lew speaking with some other doctors outside of the room and tell him. I expect the customary resistance to the proposal, but Dr. Lew readily agrees. Maybe he does not want an autopsy either. I am disconcerted. What if the family regrets this later on? I reason with myself that if they want to pursue some kind of legal action that there will be plenty of information to work with in any case. I decide not to disturb them with my concerns and I tell the respiratory therapist that the family wants the tube out and the doctors are okay with it.

I return to the room and tell the family that the respiratory therapist is on her way. I disconnect the breathing tube from the ventilator circuit in the hopes that it will look a little better that way. The family is already on their way out though. A frothy pink foam starts making its way out from Mrs. Wilson’s lungs and dropping onto the bed. I am glad that the family did not stay to see this.

As I start to work on taking down the network of IV tubing from the pumps, a young doctor comes into the room. He must be the neurosurgery resident. It is as if he is trying something out on me as he starts saying things like, “She was doing well when we brought her down here. How could I have missed the early warning signs?” I am not having any of this though. Without looking up I say, “She was critically acidotic from 6 o’clock this morning.” This silences him. By now I have decided not to bother separating the IV tubing and I am cutting though the tangles with a scissors. Some of the lines have not been clamped and I tie the ends off to stop the fluids from pouring onto the floor. This kind of cutting could never be done in life and watching it seems to drive things home for the resident. Mrs. Wilson, a reasonably healthy middle aged woman, walked in for an elective procedure yesterday and now her body lies before him dissected and dead. The resident mutters loudly “Shit!” and exits.

The tube is out. The room is clean now, save the overflowing trashcans off to one corner. I turn the lights down and go to the waiting room to invite the family to return. At first I am not sure if they will come back again or not. After a few minutes the daughter returns with her younger sister. They are in the room alone together for only a minute. As they leave the younger sister is crying, “It does not even look like her!” I try to imagine what Mrs. Wilson’s face must have looked like in life.

It is 6:30 pm now. Finally, I sit down to write my nurse’s note and chart vital signs. Another nurse asks if I need anything and I ask her to print out the record of Mrs. Wilson’s vital signs so I can copy them to the nursing flowsheet. The computer data is not saved. The nurse returns looking nervous that I may become angry and informs me that the computer data has already been deleted. The asystole (no heart beat) alarms go off every two minutes until the patient has been discharged from the system. Discharging the patient erases the data. People usually ask the patient’s nurse before doing it, but not everyone knows what to do. Anyways, it does not disturb me. Maybe I am braver or more foolish, but I just do not see this being a problem for me even if something legal happens with the case. The code documentation is there and I put in a few estimated vitals from memory. I write an explanation in my nurse’s note along with a summary of the day’s events.

My shift is over now. I was tired at the beginning of this day, and now a peaceful sort of exhaustion is taking hold of me. I ask the night charge nurse if it is okay if I leave the tagging and bagging for them. Everything else is done. It is okay.

I get a few pats on the back as I am leaving. I think that calling for the family during the third code was particularly appreciated by the other staff. “I know you make more money as a floater, but you should come and work with us,” says one of the techs, a black woman with whom I have had some friction in the past, “We need more men here.”

My Code (continued from previous post)

2008-12-25T15:55:00.000-08:00

Dr. Lew has cut through to Mrs. Wilson’s abdominal cavity now. A clump of fatty tissue, the size of a squashed loaf of bread, is removed and placed to the side exposing the intestines. Dr. Lew probes with the suction, looking for pockets of blood. He sucks out 2 liters, but they had been expecting more. Through a translucent membrane at the bottom of the abdominal cavity we can see a large pocket of blood that has collected in Mrs. Wilson’s thigh (where the catheter was inserted for the original procedure). The doctors decide not to go after it. We have not found the cause of Mrs. Wilson’s decline here. “How is her lung compliance now?” Dr. Lew asks the respiratory therapist. “It is much easier to bag her now,” she replies. At least we have taken some pressure off of her lungs.

As the young doctors gather round, Dr. Lew rummages hand over hand through Mrs. Wilson’s guts like a boy digging in a sandbox. He takes her large intestine in his hand and shows his students the areas that have been denied blood flow – “this area is normal… this area may recover… this area will not recover and will need to be removed, but we will come back and do that later.”

As they finish, Dr. Lew takes sterile towels moistened with saline, lays them across her intestines, and tucks them in around the edges of the incision (an opening about two feet long and one-and-a-half wide), “so she does not eviscerate while being turned.” A plastic vacuum dressing is then applied and attached to the wall suction unit with plastic tubing. A steady trickle of pinkish fluid begins making its way over Mrs. Wilson’s shoulder on its way to the canister on the wall.

The whole procedure is over in less than half an hour. My dreamlike feeling returns as I watch the OR nurses counting out their instruments, making sure nothing has been left behind. “5-6-7 of this kind of clamp I have never heard the name of before, 5-6-7 of that clamp,” etc. I conclude that OR nurses are entirely different creatures from unit nurses. These two middle aged ladies are cool, calm and collected. As they focus on their work, they seem to see only an operating room around them. The OR must have sent their best.

Mrs. Wilson’s blood pressure has remained high throughout the procedure. I have been slowly backing down on the pressors and her systolic pressures are now below two-hundred. I have not had time to check orders since the code, what to speak of documenting vital signs. Labs must have been ordered after the code. I draw the blood from Mrs. Wilson’s arterial line and hand the tubes off to another nurse who labels them and sends them to the lab through the tube system.

Mrs. Wilson maintains for the next half hour or so. The charge nurse asks me how she is doing now. “She will code again soon.” I reply. “Don’t say that!” he says, but I need him to know I will need him to stay around. The fellow hangs around also, catching up on other work on the computer just outside the room.

The first labs come back just as Mrs. Wilson’s blood pressure drops out and her heart slows to a stop again. Her blood PH is still below 7. I call for the fellow and the charge nurse, max out the pressors on the IV pumps and take my position at the head of the bed where the IV access is. I lay out saline flushes and use them to chase the code drugs in. Maria, he nurse who was pushing the meds last time asks me if I want her to do it again. I shake my head and ask her to fill out the code documentation. The charge nurse continues to assemble the syringes of code drugs and hands them to me when it is time. I call out, “Epi is in, Atropine is in, Bicarb is in.” as I push them. Maria writes it all down. I call out, “Her PH is 6.97,” again, but it falls flat again. Compressions go on, the bagging goes on, more liter bags of saline are hung on pressure bags and infused wide open. After another ten minutes we get her back again.

The room clears out again as Mrs. Wilson holds her blood pressures of over 200 again for now. Soon it is just me and the fellow in the room. “What do you think is going on?” she asks. “I think her acidosis is stopping her heart and that it is also causing massive tissue death which is feeding her acidosis in a viscous cycle,” I reply. She seems to agree. I had assumed the doctors were on top of this, but I begin to wonder if I was wrong. “So what do we do?” asks the fellow. “Well, I think the bicarb is what is bringing her back, but it is only going to be temporary. She is going to continue to code. I think you need to talk to the family.” She agrees. I suggest turning the bicarb drip up to buy time. She agrees to that also and I turn the rate up to one liter an hour.

Soon the fellow and the Mrs. Wilson’s daughter are in the room talking. I go to a computer to check orders and to give them space. From the hallway I hear the daughter, who appears to be in her late twenties, protest, “What is going on here!? First they told me her heart had only stopped for a minute and now you are telling me it was stopped for ten minutes! What is happening here?” The fellow must be telling her that there has probably already been a lot of brain damage and that it might not be the best thing to continue trying to save her.

The fellow leaves the daughter in the room. I go in to check the pumps and clean up what I can. Mrs. Wilson’s body is covered with a sheet to hide her incision. “Oh Mom,” says the daughter, her voice cracking a little, “I’m sorry I did not come around more.” She asks if pink fluid in the suction tubing is coming from the procedure that was just done. I tell her that it is. She stays for a few more minutes in silence before returning to the waiting room.

To be continued.

My Code (continued from previous post)

2008-12-19T18:04:00.000-08:00

The nurse who was taking care of Mrs. Wilson in the Neuro ICU seems a little reluctant to leave, but she tells me what she needs to and goes. I keep busy getting the room organized. I am still getting acquainted with the tangles of IV tubing when Mrs. Wilson’s blood pressure drops out and her heart quickly slows to a standstill.

I call out for help and the room is soon flooded with staff. The code cart arrives and a nurse opens the drug drawer and begins screwing together the syringes of epi, atropine, bicarb, etc. I am with the IV pumps, on the opposite side of the bed from the IV ports that need to be used for pushing the code drugs, so another nurse starts pushing the drugs the doctors are calling for while I increase the doses on the drips that are already running. The epinephrine drip was already over the suggested maximum dose. Following the doctor’s instructions I max out the levophed as well. Mrs. Wilson is a big lady, so two of the techs perform chest compressions in tandem – one on each side of the bed pumping in unison. The respiratory therapist takes Mrs. Wilson off the vent and uses an ambu bag to ventilate her by hand. She says Mrs. Wilson’s lungs feel stiff. The nurse documenting the code keeps track of the timing of the doses of code drugs, calling out every two minutes when another round can be given. I call out to the room that Mrs. Wilson’s PH is below 7, but it does not seem to register. The pumps are now taken care of and I am feeling uncomfortable that I do not have an active role in the code any more. It is my patient. I should be pushing the drugs. It is like someone else is doing my job for me. The other nurses may feel I am not up to the task. Nothing to do now but endure it though. We keep pushing bicarb every two minutes. That should help if anything can.

We keep going for ten minutes or so. Suddenly Mrs. Wilson’s heart starts to beat 120 times a minute. Her blood pressure shoots up to the 230’s. The chest compressions have pumped the code drugs to her heart apparently and it has resumed its function. There is still no pulse-ox reading. Everyone stops and watches the monitor for a few minutes. When it becomes clear that the rhythm is stable for the time being, the room begins to clear out. One of the doctors tells me to start backing down on the levophed, but I do this conservatively. He seems to think she will be fine now, but with her low PH I am not so confident.

Soon word comes that the surgeons will be performing an operative procedure on Mrs. Wilson. They will do it here in the room since she is too unstable to transport to the OR. A team of nurses will be arriving from the OR shortly. I am to get the room and the patient ready.

It is just me and Hal in the room now. I pace up and down the room trying to clear space and do anything else I can think of while repeating out loud to Hal, “This is beyond my experience. I have never done anything like this before.” Eventually Hal replies that he has only seen it a couple of times himself. Apparently what mainly needs to be done is to pack absorbent pads under the patient’s body so that the bed does not become entirely soaked with blood. I help Hal get the pads tucked in from mid thigh to mid chest on both sides. They will be opening Mrs. Wilson’s belly.

Someone calls in that all the OR nurses need is an extra suction set. The charge nurse has been staying nearby and he goes of to get the supplies. While he is gone, the OR team arrives. Two OR nurses wheel in a cart full of instruments and begin to set up shop. They ask about the suction and we tell them it is coming. Dr Lew, the attending, will perform the surgery. Suddenly the room is full of doctors. The residents and interns will watch. A new fellow is also in the room. She ran the code, but her background is apparently not in emergency surgery. The attending jokingly invites her to do the surgery and she puts up her hands and takes a step backwards. Maybe by the end of the year she will be ready.

There is a dreamlike sensation for me as the world of the OR, which I have never really seen before, now invades my room and my territory. Standing at the side of the bed, I watch as Dr. Lew, who I have worked with before but never seen in surgery, takes a scalpel and makes a deep incision from just below Mrs. Wilson’s sternum down towards her navel. A faint smell of barbeque wafts through the room as Dr. Lew uses an electric cauterizing probe to stop any bleeding. We have the suction set up now, but when we hand the end of the tubing to the OR tech he barks at us, “This is not sterile tubing!” We stammer, ashamed “All…All we have up here is clean tubing…” One of the OR nurses has an idea and cuts the one section of sterile tubing they have brought with them in half. We use a connector to hook it to our tubing and the OR nurse gets the suction into Dr. Lew’s hand just a moment after he reaches for it for the first time.

I am pushed out of my bedside spot by a surgical resident who feels more entitled (fair enough), and I find myself standing in the second row, next to the fellow. As we observe Mrs. Wilson’s dissection, a thought occurs to her. “Have we given any anesthesia?” she asks me. I look into her eyes and shake my head slowly. For just a moment we both shudder, but it passes quickly. You would not, could not give such an unstable patient anything that might have a depressing effect on her physiology. Besides, Mrs. Wilson is not moving a muscle. She has been as still as a stone since she came from Neuro.

To be continued:

My Code

2008-12-14T06:45:00.000-08:00

There had been a question as to whether Hal (another floater like myself) or I would take the patient that was coming down from the Neuro ICU. I was assigned the empty room, but Hal, who was both more experienced and better known to the nurses on the SICU, had initially been given the patient and had taken report by phone already. I do not know what kind of calculations went on, but it was decided that I would take the patient after all.

Hal sat down with me at a computer and pulled up the patient’s chart. As we looked through her labs, Hal told me her story: Mrs. Wilson had come to the hospital for treatment of a brain aneurism. A catheter had been inserted at her groin and passed all the way up into her brain. When the aneurism (an out pouching of the blood vessel) had been reached it was “coiled” or filled with some kind of springy string (that is what it looks like in the pictures anyways). This had gone smoothly, but when the surgeons had tried to treat another aneurism they had found just past the first one, they “lost the coil” (in Mrs. Wilson’s body) and she had been spiraling down since then.

The exact cause for Mrs. Wilson’s rapid decline had not been determined, but she appeared to be going into multiple organ failure. She was coming to SICU to be started on continuous dialysis for treatment of a metabolic acidosis. Hal and I looked at her blood gasses (labs that show blood oxygenation, PH, etc). The metabolic pathways of the body require a slightly alkaline environment. Normal PH is 7.35-7.45. Anything below 7.20 is generally considered critical. At 7.0 the heart will stop beating.

It was 11:00 am. At 6:00am Mrs. Wilson’s PH had been 7.06. The latest blood gas had a PH of 6.98. Mrs. Wilson was about to code and die. “They should not be transporting her, they should code her there.” I say. Hal and I discussed what was going on. The neuro ICU is generally slow and they do not generally have a lot of codes. Perhaps they did not feel up to it. It is an ICU though and they should have been able to handle it. A nurse could be sent from another unit to help them with the continuous dialysis machine if they were not comfortable with it. Perhaps the doctors were trying to spread the blame. Mrs. Wilson would die under the care of General Surgery instead of under the Neurosurgery service.

The charge nurse, Mark, headed into the empty room to make sure everything was set up properly. “What is going on with that neuro patient?” “It is a dump, (on us by Neuro ICU), she is about to code.” Hal concurs “It is a dump,” he says. We will need backup.

Mrs. Wilson arrives with an entourage of two nurses, a neurosurgeon, a respiratory therapist pushing a ventilator, and a tech pulling two IV poles packed with at least 6 IV pumps - all running fast. Her blood pressure is low, her heart rate high, but the levels are alright for the time being. There is no pulse-ox (blood oxygenation) reading. We rush to get her settled in the room. I check Mrs. Wilson’s IV access. She has a central line in her neck and one on each side of her groin. There is a femoral arterial line also. I make sure I know which is which. There is no dialysis catheter. One will need to be inserted before she can get dialysis, if we ever get that far. I find the IV ports I will use for injecting the code drugs and another two ports that will be used for fluid boluses and blood products when they are ordered.

I turn to the pumps. Dobutamine, Levo, Epinephrine, (pressors for low blood pressure) all running near of above maximum allowable doses. At normal doses, a bag of these drugs can last a couple of days. These bags will need to be changed every couple of hours. I check to see that they have brought me spare bags. They have. Sodium bicarbonate is hanging. It is running at the standard rate. It is used for treating acidosis, but it will be like a garden hose on a forest fire at this point. I make sure there is a spare bag. Still no pulse-ox reading. No way to know if she is getting air or not. The mechanical ventilator is on high settings with 100% oxygen. That will have to do for now. Epinephrine causes vaso-constriction and can shut down peripheral circulation. The pulse-ox reads from peripheral circulation, so we may be out of luck. We can send blood gasses to the lab instead – it just takes half an hour or so to get the results back.

To be continued:

If All You Have is a Hammer...

2008-12-07T04:25:00.000-08:00

“No open heart patient, especially a fresh open heart, dies in this unit with a closed chest - that’s our motto.” This is from my orientation tour by an assistant nurse manager of another CTICU (Cardiac / Thoracic). She was pointing out which code carts were equipped with “chest trays.” I have not seen this so far, but a chest tray will be including some kind of scissors for cutting the sternum and an instrument for spreading the ribs. The idea is to have quick access of the heart in case a complication develops after surgery. The motto is about the ones that die. You can add something like, "whether there is any chance it will help or not," if you like. It is there silently already.

“When all you have is a hammer, everything looks like a nail.” That is my motto. I have noticed that all codes are not equal. In MICUs (Medicine), the codes are generally chemical codes – the doctors look at the patient’s labs and inject drugs to try to get the heart going and to correct any imbalances that may have caused the problem. I favor these over the other types because the doctors are more able to determine whether or not there is any point in continuing. MICUs tend to have the highest mortality rates in their hospitals because they get the endstage, inoperable cases. When death is expected, there is less need for dramatic gestures or heroic attempts.

In case my readers are not aware, I should mention that the statistics for meaningful survival of a real code are dismal – like why do we even bother dismal, maybe we are doing more harm than good dismal. By “meaningful survival” I mean a return to anything approaching normal consciousness and by “real code” I mean when there has been full cardiac or respiratory arrest. If memory serves, it is under 5% of those who are “saved” who ever leave the hospital (just like on TV).

In SICUs (Surgical) the surgeons seem to feel compelled to open the patient’s belly. This makes the least sense to me of all the interventions, but I gather they are looking to release pressure that may be constricting the lungs and for bleeds. I have seen this done a few times with no impact of the final outcome.

Trauma ICUs seem to favor chest tube insertion and their codes tend to go on and on. I saw one where the patient’s heart was stopped for fifteen minutes. We finally did get it going again, but what was left after that I would not care to speculate. After the code the charge nurse, Matt, gathered the rest of the nurses on the unit in another patient’s room to debrief. This is the only time I have seen this, although it really ought to be done after every code. I guess Matt was trying to seize the moment, but the choice of venue was unfortunate. The patient was totally out of it, but a relative was visiting. Matt had his back to the family member, who was standing just behind him. I have often wondered if the Matt realized the family member was there or not. The woman was so close to him, it is hard to believe Matt did not know. Maybe he thought it was another nurse.

Matt asked if anyone saw room for improvement. Not wanting to be too obvious with the visitor right there, I held out my arms and pantomimed ineffective chest compressions. Two male nurses and two female nurses had been doing the compressions. The patient had an A-line, so you could see the blood pressures they were generating. The men were generating systolic pressures in the 60s, which is pretty good for chest compressions, but the girls were only going through the motions, not even putting their weight into it, and they were not generating any pressure at all.

If you are wondering, I did not say anything during the code. I was just there for the day and the attitude was that trauma nurses were better than anyone else. Matt had been in there (he was one of the men who had given good compressions) and if he was not saying anything there was no place for me to. I was glad of the opportunity that came with the debriefing, but Matt just nodded and acknowledged, “The chest compressions,” without elaborating. Apparently he did not feel up to confronting the girls either. He moved on, listing his observations.

We had taken too long to put the back-board under the patient (this gives a solid surface to do compressions against instead of the bed mattress), and we had taken too long to bring the chest tube insertion tray. I watched the discomfort grow in the expression of the family member.

It had taken about ten minutes for the chest tube insertion tray to show up. The fellow who was going to do the insertion had called for it repeatedly with mounting frustration. Apparently it had not been in the usual place, but the task had also not been properly assigned and no one had taken ownership. Matt tried to put some gentle pressure on the nurses to do better next time, but the nurse who had brought the tray in the end felt accused and became defensive. Matt met her forceful renditions of various versions of “It wasn’t me!” with versions of “I am not trying to assign blame, we are just doing this so we can improve…,” but the nurse could not back down and the debriefing unraveled. The family member now seemed even more unsettled, but had no one to talk to. We disbursed and went our separate ways. I guess that is why we do not do the debriefings more often. Too much headache.

Waiting for a Miracle

2008-11-30T08:20:00.000-08:00

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

2008-11-21T17:20:00.000-08:00

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

2008-11-17T08:54:00.000-08:00

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

2008-11-07T11:50:00.001-08:00

“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

2008-11-01T05:20:00.000-07:00

“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.

Tie Me Up, Tie Me Down

2008-10-24T17:50:00.000-07:00

One of the surprises of the job of being an ICU nurse for me was how often I had to restrain my patients. Almost every patient that is on a ventilator has both arms tied. The exceptions are those that are not physically able to move (organic restraints) and those who have been intubated for some time and have demonstrated trustworthiness. The second group are often subjected to the nurses whims. If the night nurse for instance sees such a patient scratch his nose at the beginning of the shift, she may decide that it is not worth the risk and she may tie the patient up for the night and be done with it. There are also quite a few patients who sundown. They may be okay during the day and then become erratic at night.

Then there are the so-called ‘social’ intubations. These are usually large men who come into the ER intoxicated and in need of treatment. Their belligerence interferes with their treatment and more and more sedatives are prescribed. At a certain point the doctors begin to worry that when they do finally fall asleep they will stop breathing because of all the sedation. A-bing’n-a-bang’na and they are smoking plastic.

Patients who have recently had feeding tubes inserted through their noses also usually need to be restrained. It takes a fair amount of self control for a patient to not pull them out. I once watched as my large male patient wiggled down in bed to try to get enough slack on his restraints to get his hand around his NG (naso-gastric tube). “Sir, please do not do that,” I said. “I got to!” he replied.

What about self determination?

What about it? It is not that patients get to dictate their care. If they are in the hospital, they need certain things. A patient cannot be allowed to starve to death simply because they pulled out their NG. Generally speaking, they do not want to be starved; they are just annoyed by the plastic tube in their nose. In the end, it is usually an all or nothing scenario – you get it all (by force if necessary) or you go home. If you cannot go home (if you could you probably would not be in the ICU in the first place) then you just sort of have to get it all. No one really has much choice in this regard. The patients do not, but the nurses and doctors do not really have much leeway either. Protocols have to be followed. In this way I have seen many a patient suddenly find themselves with a sterile drape over their heads and a large needle plunging into their neck (central line insertion) without so much as a “do you mind?” And the docs do not always get it on the first try. Sometimes it takes three different doctors and three different sites. Sometimes they cannot get it at all.

Then there are chemical restraints. Ativan tends to put patients to sleep. Particularly needy patients tend to get a lot of it because the nurses get fed up with them. What else can you really do for them anyways? When a patient makes an angry disturbance (banging on the bed for attention for instance), the nursing joke is to say “I think he is saying ‘give me ativan.’”

The hands down favorite drug of ICU nurses is Propofol. This milky white IV infusion induces a coma like state and can only be used on intubated patients. Propofol turns the nightmare patient into a turn-water’n-feed patient. I have heard one nurse refer to it as ‘the milk of the gods.’ Doctors also like propofol because the effect of it wears off in about ten minutes once it is turned off. A patient’s neurological status can thus be assessed briefly periodically whereas the patient who has received large doses of ativan may take days to wake up. There is a hitch though. Propofol is fat soluble, so if the patient is on it for more than a few days it absorbs into the tissues and may take weeks to clear after it is turned off.

One day I heard a commotion and went to the room of a newly arriving patient. Two teams of doctors and a large handful of nurses were settling the patient into his room. It was sort of an ad-hoc gathering. The patient did not really need much attention; people had just happened by and ended up in the room. The patient was tied at both wrists and both ankles. Four point restraints are illegal, but not uncommon. The patient was yelling, begging and pleading, “Please! Please! I do not want to die tied down like a dog! Please untie me! Please!” With the exception of me, everyone in the room was laughing at him. It was not malicious laughter it was more of the way people laugh at a child who is asking for the moon. Such a ridiculous suggestion! How could we possibly? The man was obviously crazy.

How shall I die?

2008-10-17T17:51:00.000-07:00

A sage of ancient India, when he felt the end of his days approaching, left everything he knew to wander in the forest. Coming across a forest fire he entered into it and gave up his life in this way. I have always been attracted by such stories. When I contemplate my own death, I imagine wandering around Govardhana alone and anonymous. I would cover myself in dirt or ash to disguise my complexion and then walk here and there, barefoot and without self consciousness, leaving myself in the palm of Krsna, suffering or not according to His sweet will…

I stand with two other nurses around the bed of a young man who was shot through the head while sitting in his car. It was done by a passenger, presumably an acquaintance, but no one was sure who. Our patient was paralyzed from the nose down, able only to blink his eyes. When asked to blink once for no and twice for yes, he consistently blinked twice when asked if he was in pain, but this was the extent of his communication. I tried running through the letters of the alphabet with him to get the name of who had shot him (It was not really my place to do so, but I felt compelled), but I did not get the same letters twice and had to conclude that he was not present enough to be able to answer the question.

We had come to his bedside to pull him up in bed and turn him. We contemplated his predicament. One nurse mentioned that he had seen a movie that had been shot from the perspective of a person in the same kind of condition. “Well that is very interesting,” replied the third nurse, “but if it was a movie of my life, the screen would just be black.” She would not accept life in such a condition.

I felt she was missing something, but did not say so. How often do we really get to choose the circumstances of our death? Some people definitely do. Some definitely do not. The rest are somewhere in between.

Nurses fear hospitalization.

In my first year of nursing a male nurse ended his report on a patient who had been in miserable condition in the ICU for months by spontaneously confessing that he kept a syringe full of insulin at home and that he had instructed his wife to inject him with it if he ever ended up in the ICU. Independently, a second male nurse made a similar statement to me under similar circumstances. Female nurses are more likely to say things like, “I hope my family doesn’t love me this much.”

Some trauma nurses do not wear their seatbelts. They would rather die than end up as a trauma patient. Burn nurses do not allow their children in the kitchen while they are cooking. Curiously, respiratory therapists tend to be smokers. I have yet to meet a nurse who says they would definitely get a liver transplant if their liver failed. “I would have to think long and hard about it,” is the closest I have come. (I have always asked the question in the context of caring for a patient with a failing transplant).

As far as I am concerned, I am not so worried about air hunger or avoiding pain. I think death is intrinsically painful and I am not so convinced that covering up the external expression of this with drugs really makes for a better death. I am speaking for myself now. Why drag it out? I would rather just get it over with quickly and naturally. I hope that when the time comes that I am able to make these choices for myself. If I am helpless, I hope I am still able to express myself. And if I am able, I hope that I will be listened to.

Transplant Hell continued

2008-10-10T18:49:00.000-07:00

I try to remind myself that transplant surgeons are not intrinsically evil. I have seen almost exclusively the 20% of liver transplant patients that die long and horrible deaths. Perhaps if I saw more of the other 80% I would feel better about it all. It is all somehow ghoulish though. I am not able to get comfortable with it. Has Mr. Jones been reduced to the mentality of a caged animal by the influence of his disease, or has he realized too late that he is being flushed down the drain of modern medicine with no expense spared? Why shouldn’t he see us as his enemies? He was not told of this possibility which is now his hellish life. I have spoken with a few patients whose liver transplants did not go bad. They had no idea how things could have been. What were the statistics for Vioxx? One in how many hundreds of thousands died? For liver transplants it is one in five. And the Vioxx people dropped dead suddenly. They did not suffer over weeks and months like these transplant patients do. Yet we never hear about the transplant patients in the media - just calls for more donors.

Here is another concern – Mr. Jones was probably still in fairly good health before his transplant. The healthier the patient is, the better his chances after transplant, so the surgeons do not like to wait for their patients to get ill. When laboratory tests and scans show that the liver is likely to fail, the patient is encouraged to sign up for the transplant. The transplant takes place while they are still in good shape which leaves open the question as to how many good weeks, months or years they would have had without the procedure.

Then there is the donation process. Nurses I have spoken with who have assisted with organ harvest express deep discomfort with it. It is by all accounts a bloody mess. The nurses complain that the doctors are not properly respectful of the donor bodies. I wonder if it is possible to respectfully cut a liver out of a functioning body. There is also generally a lot of joking around that goes on in the OR. I imagine that this could seem very different when you do not expect the patient to get better at the end of it all.

A lot of money generated from these organs. Transplantation must be a billion dollar industry. The surgeons are no doubt well paid, but the industry also supports a host of coordinators, “counselors” who speak with the families of potential donors (do they get to keep their jobs if they are not good at getting families to donate?), nursing staff, clerks etc. The ICU nurses also care for the donors bodies as one-to-one or even two-to-one patients because of all of the extra lab work and medications that are required for maintenance and preparation of the bodies. Again, these nurses would generally rather be spending their time on a patient that has a chance of getting better - and that is without even considering that the recipient might not do well. So many livelihoods are at stake. Shall we pretend that no one is influenced by this?

I once saw a candidate for organ harvest being evaluated by a surgeon. The patient had been a two-pack-a-day smoker for twenty years and the surgeons were considering taking his lungs for transplant because he had a small frame and small lungs are in high demand for young cystic fibrosis patients. The patient had suffered from a heart condition, but they were considering taking his heart as well. In the end it did not happen. I heard the surgeon talking on the phone saying that he would do the harvest, except that he had never done it before and had only observed once. He did not feel comfortable doing the procedure on his own and there was no one else available at the time.

The unfortunate liver transplant recipients suffer through liver failure and organ rejection at the same time. If they stabilize, they may be confined to bed, weak, of disturbed mind, swollen and in pain. These are the patients who beg for death and their pleas are almost always ignored. The surgeons seem to live with themselves by not contemplating the cases that go bad. They make their daily rounds and encourage the family members to remain hopeful. ‘We just have to get on top of the latest infection. Maybe he will only need dialysis temporarily.’ The family members somehow keep their faith in the surgeons and become callous to their loved one’s pleas (he is feeling weak, who could blame him? but I will be strong for him). These patients pull on anything they can get their hands on. They will rip the feeding tubes right out of their stomachs. The nurses, who are often the most sympathetic to their wishes, are also the ones who have to make sure they are tied tightly at all times.

Once I found myself yelling at one such patient whom I had untied for a short period in the hopes of giving him more freedom. “Stop pulling on that! If you don’t, I am just going to have to tie you up again!” I felt someone watching me and turned around to find the adult son of the woman in the next room giving me an icy stare. How could I explain it to him? The next day I was filling out a job satisfaction survey. I was surprised to find the question, “Do you feel your work is hardening you emotionally?” I was even more surprised as I found myself clicking on “strongly agree.”

Transplant Hell

2008-10-04T04:11:00.000-07:00

No Sanctuary for the Dying

2008-09-29T17:59:00.000-07:00

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.

Outside Jessica's Room

2008-09-25T17:41:00.000-07:00

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.

Inside Jessica's Room

2008-09-25T17:10:00.001-07:00

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.

Orientation

2008-09-20T05:23:00.000-07:00

“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.

The Good Fight

2008-09-16T18:41:00.001-07:00

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.

Death by Cystic Fibrosis

2008-09-13T17:05:00.000-07:00

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.

Missing a Lung

2008-09-13T16:51:00.000-07:00

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 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.

Not for TV

2008-09-09T17:29:00.000-07:00

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!

Surprise Encounter

2008-08-22T16:00:00.000-07:00

“Where is the documentation, Lori! We need the documentation!” says the day attending to the night attending at the beginning of the shift. Lori pours through the chart, but she can’t find the advanced directives. “I know this isn’t what she wanted. I thought the paperwork was all taken care of.” Both of these doctors are unfamiliar to me. I have seen them around, but have not worked with them. Something about the way the day attending said “Lori” makes me look at her more closely. I went to grade school with a Lori. I look at her face. There is a red splotchy birthmark. It is her. It must be. I watch as she continues to flip through the chart. Her distress at the thought of her patient’s wishes being unfulfilled raises feelings of camaraderie in me. I wait for an opportune moment to say something to her, but she gets up quickly and goes around a corner. I follow, but lose her. I go into the doctor’s work room and check her name. It is her. Either she is not married or she did not change her name. I try to find her, but cannot. I only have so much time to spare – I have to get to my patients.

During the day, I tell other nurses that I went to grade school with the night attending. Some take it simply as a happy event, but others seem to think my enthusiasm is misplaced. They look at me as if to say, “Don’t you get it, she is the attending and you are the nurse. She is the success and you are the failure.” It does not bother me. I have made my choices with eyes open and I am not unhappy with my path. I continue to share my happy news.

The next day, I meet Lori in her office (I did not realize where it was the day before which is why I could not find her.) I introduce myself and then she recognizes me. “Oh it is you. They told me a nurse was looking for me, but I could not figure out who it could be.” She has me sit opposite her. The small, windowless room with a desk, a few chairs and a computer is shared by the attending physicians. I have not previously had cause to enter it. Lori tells me that she had noticed me before and that I seemed familiar, but that she could not place me. She asks to see my badge. I go by a different first name now. “That would not have helped either.” She says.

We catch up a little. I ask her if she is married. “No, and I won’t be if I stay on night shift.” This is her first job as an attending and she took it to “get through the door.” She asks for my story and I tell her about giving up my material possessions and staying in homeless shelters for a few days before moving into a Vaisnava temple and living as a renunciate for nine years in India and elsewhere. I married six years ago and needed a livelihood. Nursing has been a pretty good fit for the last three years. Lori looks at me with a strange, disconcerted look. I do not meet people from my past very often, but when I do, they usually look at me this way when they hear my story. It takes me off guard because I am used to being around people who easily understand and appreciate the urge to jump the fence and run.

Lori asks me what I think of the MICU. “On one hand we expend a whole lot of resources on people who really are not very worthy of it, and on the other hand dogs could never be treated the way these patients are treated,” I answer without hesitation. I am referring to the drug addicts, alcoholics etc. who destroy their health and then receive unlimited treatment which they will never pay a dime for, and I am referring to the patients like Mrs. Hardy who waste away over weeks and months, helpless to defend themselves against the constant needle insertions and painful procedures which come with ICU treatment. Lori’s head drops and she turns her face away. “I know what you mean,” she says, “We flog our patients pretty hard and most of the time we do not change the final result at all.” She adds that she has worked with attendings who were very aggressive in withdrawing care and that she was not comfortable with that either.

I have a tendency to speak too directly too soon. Friends have told me this. Lori continues to avoid my gaze. I had not meant to disturb her like this. I lean forward. I want to say, “Lori, it’s me Leo! Don’t you remember? We went to school together for ten years when we were kids!” Our grade school class had only 28 students. I look at Lori and see loneliness and sadness. For me, being here is a means to support my family. I have a rich community life that has nothing to do with this place. I am a nurse second. I could never give my heart and soul to this place. But that is just what Lori has done. How hard it must be. She must have started with idealism and now she sees the emptiness of it all, but she is trapped. This is her life. There is more to it than that, of course, but I think to myself that I would not want to trade places. She can stay the attending and I will stay the nurse. (Okay, I confess, sometimes I would not mind earning a little more for my troubles).

We continue to talk. Lori is close with her father. She talks about how she does not have satisfying relationships with her patients because, in her specialty, they all die on her. (The concept of this kind of relationship with patients is foreign to me). “A holocaust survivor just came through the unit. That is interesting, but she is dead now, so I guess it does not matter.”

I tell Lori I remember her eighth grade yearbook picture. She had drawn a picture of a hippo with the words, “mighty things from small beginnings grow” over it in an arc. Lori is very short. She was tiny then. She tells me she still has her hippo collection. She remembers me more clearly from this time as well although we did got to the same highschool also. The conversation comes back to my decision to renounce and I speak generally of an existential crisis. Lori says she still has not had one. “Maybe it is time you did,” I think to myself, but I ask for news about people we went to school with. Lori is in touch with a few and knows a lot more than I do. I hear about who is married, who is a lesbian, who is gay. No one from our class has died yet.

Our whole conversation lasted about fifteen minutes. I started to feel I had been away from my patients for too long and excused myself. We saw each other occasionally for the next few months, but never spoke again. She seemed to not feel comfortable talking with me as an equal in front of others and I did not feel I could leave my patients to spend time with her in her office. Besides, our lives are so different. I could not think of anything more to say. Once she asked me about a patients’ X-ray, but as nurses we do not read them and I could not say much about it. Once she told me briefly about her frustrations with her position – new patients were mostly arriving on the nightshift when physician staffing levels are lowest and she did not have enough help to take care of everyone properly. Was that the last time I saw her? Maybe it was.

Did I mention...?

2008-08-11T06:41:00.000-07:00

“If we had been doing our post-op neuro-checks like we are supposed to we might have caught it and been able to do something about it. Maybe we should look into that one day,” says the charge nurse a little wistfully and a little sadly. The next moment she is off to something else. This is my first time floating to the cardiac surgery intensive care unit (CSICU) and it is the busiest unit I have seen. My patient, Mrs. Jones, otherwise healthy for a 73 year old, has had a surgical repair of an abdominal aortic aneurism. During the operation blood flow to her spine was accidentally interrupted and Mrs. Jones is now a paraplegic, although she does not know it yet.

My other patient, Mrs. Smith, is on no less than six vasoactive drips, has a Swann (a pressure monitoring catheter that runs through the heart), is going in and out of V-tach and is already hooked up to the defibrillator in case she needs to be shocked at short notice. It is unusual to be assigned a patient in this condition on a first float to a unit, but she is awake and responsive and more or less stable. Given the level of acuity on the unit (the patients here are very sick) the assignment is appropriate. Tina, the charge nurse is very responsive, so I do not worry so much about the drips I am unfamiliar with and the Swann. I ask the questions I need to and get answers. When I arrived at this hospital, I received a four week orientation before I was allowed to take care of patients – and I had been working in the same kind of unit prior to coming here. Now I am floating, so I just have to say a little prayer and dive in.

Mrs. Jones’ daughter and son-in-law know about what has happened. They are waiting for the doctor to tell her himself before they talk about it with her. They are understandably impatient for this to happen. Mrs. Jones is lethargic, but awake, and asks occasionally why she cannot feel her feet. Her daughter responds by changing the subject. I try to find a doctor to speak with her, but the doctors on the unit all decline. They say that the doctor who did the surgery should be the one to tell her, and since he is in surgery now, he is not available. Mrs. Jones will have to wait. I explain the situation to the family.

I watch Tina following the physicians on rounds and coordinating the care on the unit. She seems twice the nurse I am. Her phone rings every five minutes with new information about patients coming to and gong from the unit etc. and she rushes all around the unit taking care of whatever needs attention. I do not have to wait more than five minutes for her to come around if I have a question. During brief pauses, Tina talks with her friend, another experienced nurse, about the stresses of being a single mother. After today’s twelve hour shift she has a PTA meeting. She wants to find a partner, but all the men are only interested in one thing etc.

Mrs. Smith’s Swann numbers and waveforms do not look right to me. Tina tells me to trouble shoot the setup, but I do not take Swanns very often, and what Tina is telling me to do does not seem to fit with what I am seeing on the monitor. I insist that Tina should come into Mrs. Smith’s room and look for herself. She does so and, after a minute or two of checking the tubing, she calls the doctor to advance the catheter. The end had been flapping around in her heart instead of being in the pulmonary artery where it belongs. No more V-tach.
Mrs. Jones’ family continues to wait in frustration. People from nutrition and physical therapy come by. Everyone wants her to know about her paraplegia, but we are all waiting for the doctor. The family begins to say that they will tell her themselves soon if the doctor does not come. I try to find out when he might be coming, but get no information.

The doctors order a blood filtration treatment for Mrs. Smith. It will be something like dialysis, but more simple. The treatment is administered by nursing. Tina wheels in a machine about the size of an average microwave oven and asks if I am ready to be trained how to use it. She leaves for a minute and returns with a plastic filtration cartridge. “Each one of these costs $3000,” she says as she rips open the sterile package. Tina begins the complicated process of inserting the cartridge into the machine. She gets confused and struggles with it for 20 minutes or so. While she is absorbed in figuring out the machine, her phone rings. A room is needed urgently for a new patient, but the only empty bed is being held for a patient who is in the OR. As she talks with the coordinator, she continues to work on the filtration machine and she forgets herself. “I wish X would just die in the OR (a hopeless case presumably) so that we would have the bed for Y.” I glance over at Mrs. Smith, but she is watching TV and not paying attention. Patients tend to tune out a lot of the discussions that go on around them as they are generally too technical to follow. Tina never did get the filtration machine set up.

A little while later I am sitting at the nurse’s station talking a little with Tina’s friend from earlier in the day. Tina comes by and I joke with her, “You know, it is usually not a good idea to wish one patient dead while in another patient’s room.” Tina turns pale and looks nauseous. “I do not think she heard you,” I add quickly. “I said that in a patient’s room?” Her friend starts to tease her about it lightly, but Tina does not see the humor in it. She is a good nurse.

Around 4:00 PM Mrs. Jones’ daughter tells me that they are ready to tell her about the situation if the doctors do not come right away. I let the doctors know and one of the fellows, not the original surgeon, comes to talk. He is obviously uncomfortable and unsure what to say. He explains that they are not really sure what has happened, but that some blood flow to her spine was disturbed. They are not sure what her final status will be. He tells her that the operation was very complicated and that she is lucky to be alive. He ends with “Just keep trying to move.” My anger rises as I listen. Why can he not tell her the truth so that she can understand it? As the fellow heads out of the room a technician from bed supply comes in. “Is this the New Para?” (as in paraplegic). This is now more than I can take. Will Mrs. Jones learn that she is paralyzed from bed supply? I ask the daughter for permission to clarify and she gives it readily. I tell Mrs. Jones that the blood supply to her spine was cut off during the operation and that the damage is irreversible. Mrs. Jones’ expression becomes so blank I become unsure if she can understand me. “Do you know what paraplegia is?” I ask. She nods once, still blank. “So, you are now paraplegic,” I say feeling how badly this is all coming out. I excuse myself as the bed tech starts to set up the specially padded bed which helps prevent bedsores from forming on immobile patients. I vent my frustration to the secretary, who alerts the nurse manager. She asks me about the situation and I tell her that I feel the fellow’s presentation was totally inadequate and ridiculous. I do not know what she did with the information, or what she thought about me or anything after that. We moved Mrs. Jones to the stepdown unit that afternoon.

Final post on Mrs. Hardy

2008-07-19T21:51:00.000-07:00

I was off for five days and returned expecting to hear the story of Mrs. Hardy’s passing, but she was still hanging on. There had been another family meeting and she now had “do not resuscitate” (DNR) orders in place. She also had orders for no further escalation of care. Even though her systolic blood pressures were now in the mid to low eighties and her heart rate had dropped to the 50’s, her Levo drip would be left at the same dose it was at when the do not escalate orders were put in place (4 mics). I asked her nurse, Mark, for the stories from the last few days and he was glad to tell them.

Mrs. Hardy had had three dialysis treatments over the last five days to correct her critical metabolic acidosis. This had brought her back from the brink, but she continued to decline slowly and would have required continuous dialysis. “How aggressive do we want to be, considering her condition?,” someone from the renal team had asked.

Susan had gone on vacation and Debbie, a bolder, more experienced palliative care nurse, had taken over the case. She had decided to put an end to the farce. There had been a family meeting the day before. Lori was Mrs. Hardy’s nurse that day, and she made Mrs. Hardy’s children stay in the room with her for the dressing change - just before the meeting. They were shocked apparently. “This is never going to heal. Do you understand that?” Lori told them. Debbie caught the attending before the family meeting and explained things to him (she told me the story herself). She told him that the family needed to be told what care the doctor felt was appropriate, not asked what they thought was best. In the meeting, she told the family that this meeting was not going to be about their needs, like the last two had been, but was going to be about Mrs. Hardy’s needs. The son would just have to figure out where he was going to live, and what to do without that check he was getting (Debbie confirmed this as being part of the problem). The family agreed to make Mrs. Hardy a DNR without escalation. Lori had wanted to withdraw care right away, but Debbie was concerned that pushing too hard might have undone the progress they had just made. Mrs. Hardy had already had to wait three months. Another day would not be the worst outcome.

As the day passed Mrs. Hardy’s systolic pressures dropped into the seventies and her heart rate slowed to the forties. Everyone kept asking about the children. The oldest son and the daughter had said they would return, but they did not show. The younger son was going to stay away. Mrs. Hardy was dieing very slowly, all alone. I left at 7:30, expecting her to pass during the night.

The next morning, Mrs. Hardy’s systolic pressures were in the sixties and her heart rate was in the 30’s. Most people’s hearts would have given out by now. The night nurse related that Mrs. Hardy had opened her mouth to allow her oral care upon being requested to do so. Her eyes were half open with almost no movement. It was hard to tell if she could see or not. Her children had decided not to come. As I stood at the entrance to her room, pausing to watch her and the monitor, Laura came up behind me. “Did you hear what the daughter said? ‘Go ahead and pull the plug!’ If I could shoot someone right now…, but I do not have the time.” Laura was taking the charge nurse role for the first time this week. She checked on us every two hours.

Mark was taking care of Mrs. Hardy again today. The children had told him they were ready for care to be withdrawn, but they had not spoken with the physicians. The new residents were not sure if the attending needed to speak with the family, and had put it off for rounds. On rounds the attending instructed the resident to call the family for confirmation, but this was put off until after rounds. Even after rounds, the resident could not be bothered. There were a few sick patients on the unit that needed attention, and it was clearly a low priority for them. Mark had taken care of Mrs. Hardy more than any other nurse on the unit and his frustration was evident. He kept asking the doctors to call. They kept putting him off.

Debbie arrived in the afternoon. She had had other engagements in the morning. She got on the phone to call the children right away, fielding two calls at a time from the siblings. She caught the attending as he was walking by and put him on the phone with them. We would turn off the Levo and take Mrs. Hardy off of the vent. Mark thanked Debbie for her help. Debbie joked about killing patients off, showing awareness of possible other perspectives on what she was doing. “This should have been done a long time ago,” I said, not that she needed to hear it from me.

Mark started an ativan drip. Debbie grabbed Joe (the extern) and a brand new nurse who had just started orientation on the SICU to be present in the room. Even with everything off, it still took a couple of hours. About three quarters of the way through, I came around the closed curtain into the room. Mrs. Hardy, now off the vent, was taking agonal breaths. She did not seem to be in pain. The room was dark and the new nurse was standing close to her face. “Has it always been that color?” she asked. Debbie replied that she was getting a little cyanotic at this point. I did not disapprove, but thought about how different it would be if family was present. Her lifeless body was still in the room at the end of the shift. The night shift did the tagging and bagging. By morning there was another patient in the room. And do you know what? His story is not too much different from hers.

A forty ounce bottle and a two-by-four

2008-07-11T08:53:00.000-07:00

This week Mrs. Hardy’s condition remained more or less stable. She remained on the amiodarone and levophed drips, but did not require increasing doses to maintain her blood pressure. My patients this week were her neighbors, so there was ample opportunity for me to observe.

On rounds the doctors discussed new developments: her liver function is down and her kidneys are failing. She will need dialysis soon. The resident mentions her plan to call for another family meeting to talk about whether or not to do dialysis (a very significant decision), but the attending (Dr. Pock, a different one than last week) stops her. “Didn’t you just have a family meeting a few days ago? The family said they wanted everything done, so go ahead and get a renal consult.” The residents and fellows shoot uncomfortable looks at each other. “I…I just did not know how aggressive you wanted to be…” says the resident. “Me? What do mean by that? This is not about what I want.”

I go around the unit telling some other nurses about the incident. “Oh! Dr. Pock is the worst, I hate him!” says Lori, one of the most senior nurses on the unit. “He doesn’t care about the patients. He just comes for rounds and then he goes away for the rest of the day.” Lori and another nurse talk about how they have heard that the son who is against limiting Mrs. Hardy’s care is living in her house. “Oh, now it all makes sense, now I understand everything.” The implication being that the son is benefiting financially by keeping Mrs. Hardy alive.

I ask Susan from palliative care about this, but she does not agree. She has been working closely with the family. Mrs. Hardy has been living with her youngest son, and since he has been closest to her, the other siblings are deferring to him. Susan says that he is just not very intelligent and cannot comprehend the reality of the situation. He also has another family member that is very ill and Susan thinks he is just not able to face it all yet. It is an interesting way to plan a patient’s care. The son cannot even bring himself to visit, but he cannot let her go either.

The sense of discomfort on the unit continues to heighten. Normally callous nursing assistants talk about how sad it is to do this to Mrs. Hardy. The wound care nurse, an old hand who does not usually stop to talk, asks me about whether Mrs. Hardy is still a full code and what the plans are for a family meeting.

Laura, Mrs. Hardy’s nurse today, asks me for help with a turn. Mrs. Hardy’s eyes are closed. Her complexion is now dark brown, as if she has been in the sun all summer. I touch Mrs. Hardy’s eyebrows lightly and ask Laura “Is she still there?” “Just a little,” she replies. As we turn her, Mrs. Hardy opens her eyes. She seems to be in less distress now, as if her soul’s connection with her body is loose and slackening. It would be easy to ignore her and assume she is not able to understand us. She does not even move her lips anymore. As I look into her eyes, her hand rises slightly and I take hold of it. The look I see feels like recognition and gratitude. As she stares out from the grave, I feel glad that I can still reach her, but then I start to have doubts. Her eyes hardly move. How can I know her internal state? Perhaps I have it all wrong. Perhaps she did not lift her hand at all. Maybe it was just an accident of the turn. I put her hand down, but after a minute she lifts it again, reaching out for me. I take her hand again and look into her eyes. She gazes back with sad affection. I have words to say to Mrs. Hardy, but I feel awkward saying them in front of Laura. I do not know her well, and I am not sure if I will make her uncomfortable. But there will not be another opportunity. This moment will not return. I say the only comforting words I have, “It will not be much longer now Betty.” She continues to look into my eyes. After a few moments I excuse myself and go. If I had a better heart perhaps I would stay with her longer. Perhaps I would also push my kids on their swings as long as they wanted. There are so many Mrs. Hardys. I do not have enough for any of them.

Outside of the room, Laura asks me what I think of all this. Laura is a young nurse, well seasoned on the SICU, but still bright eyed and enthusiastic. I have avoided her a little because I have not wanted to trouble her with my jaded mentality. (In nursing school some of the professors talked pointedly with me about “contagious bad attitudes,” but what did they offer us that would have prepared us for these situations? Nothing. They could not even acknowledge the existence of such cases.) I tell Laura that I think it is wrong and it makes me angry. She agrees, “I cannot Do this.” She would prefer to take care of patients she can actually help.

The renal doctors evaluated Mrs. Hardy and decided that she did not need dialysis yet. The next day on rounds the resident begins her presentation, “…status post botched hernia repair…” Dr. Pock stops her again, “I want you to try very hard not to use words like that,” he says sternly. Dr. Pock goes into the details of the case and pushes her to properly understand the disease process. This is a teaching hospital and she is here to learn. He probably does not want to waste time on things he cannot change.

I assist with another turn. Mrs. Hardy is more distant today. She stares out blankly into the room, her consciousness absorbed in the work of breathing. The flesh exposed by several large skin tears has turned the color of turmeric with a green tinge on the surface. Fluid oozes out through the many holes created for various drains as well as the huge open cavern of her abdomen. The room is filled with a foul, musty odor. Labs show her blood is becoming acidic. The end is near.

Cells produce energy by passing ions back and forth across the membranes of mitochondria. The process requires the environment inside of the mitochondria to be more acidic than the outside. When this balance is upset, the cells cannot produce energy and they die. When they die, they rupture, spilling the acid contents of their mitochondria into the blood stream, further increasing the acidity of the blood. This manifests as sepsis or septic shock. In Mrs. Hardy’s case, it will not be reversible. Her infections are too extensive and are no longer responding to antibiotics or antifungals. As the cascade gathers pace, we can turn up the pressors to buy a few more days or hours. That is all.

The fellows come by towards the end of the shift. The day fellow is handing off to the night fellow. They are have just started working together, but clearly like each other. They pause to discuss the situation. They know that she will die soon and are concerned that Mrs. Hardy is still awake. They want her to get more ativan. “You know what I’m saying? She needs a forty ounce bottle and a two-by-four.” When they are gone, I ask her nurse, Bea about it. “They want you to knock her out?” Bea is an orthodox Christian from Kenya. “Yes, but I do not understand why. She is not agitated.” I agree. The orders for ativan are PRN (as needed) and are left to the nurse’s discretion. Bea decides not to give the ativan.. The night nurse may have a different opinion.

Anonymous

2008-07-06T07:16:00.000-07:00

I am writing anonymously for several reasons. My purpose is to talk about the way our healthcare system works on a human level. To give an accurate and honest account is to invite hard questions – “Why did you do that? Why didn’t you stand up against that?” It is difficult for people outside of the healthcare system to understand the full context and circumstances under which our decisions are made and it would be very easy to jump to condemnation. It is not my intention to expose my coworkers to this condemnation. There is great wrongness in the healthcare system and, from my perspective, I see that much harm is being perpetrated in the name of offering the highest standards of care. This is what impels me to write, even though I see that there is personal risk for me in doing so. This is what I am trying to write about. I have worked in several different hospitals and dozens of different units. While each has their own strengths and weaknesses, the situation is the same everywhere. Just because the kinds of things I am writing about are not generally discussed does not mean that the stories I am telling are exceptional. I am intentionally writing about the typical. I have not found any evil actors. The people I work with are generally caring and concerned for the patients. I may disagree with them in attitude and perspective, but I see that we are all more or less helplessly serving a system which is essentially broken and brutal. There is no real opportunity for any individual, whether he is the biggest doctor or the smallest nurse, to stand up and effect a major change. We often feel that we do not have enough love and compassion to properly perform our jobs. So much is expected and demanded of us and we are certainly lacking. In maintaining the bogus façade, we cut corners, make bad decisions and errors and we hide them most of the time because we know the outside world does not understand how bad it is. We know they do not realize how unnatural it all is, how vulnerable they are and how difficult it is to protect them on this path. Here lies the disconnect, the double life. We are so accustomed to the basic deception and take it so much for granted that we have lost the capacity to tell our patient’s stories to the people in general. The stories that do escape are generally carefully selected and highly sanitized.

Fear of death sells even better than sex. We, as a society, have agreed to be the uneducated consumers. Business men provide us with newer, more expensive products to consume- that is their livelihood. Societal values give them an open field. It is these values and our negligent ignorance which causes things to remain as they are. I am endeavoring to shed light on this world not so that the first doctor who walks by can be dragged off to judgment, but so that we can each look at ourselves and question our own participation in the system. If our eyes are open, we can make better choices. Death is ever victorious. We will not do well for ourselves if we are not able to face this truth.

Mrs. Hardy cont.

2008-07-04T04:30:00.000-07:00

Mrs. Hardy is now on a Levophed drip to keep her blood pressure up. It is running at a dose of 5 micrograms a minute. This is not a particularly high dose – which would be a sign that death is near, but neither is it a low dose of 1-2 “mics” which indicate that she might be okay without it shortly. Mrs. Hardy’s body is responding to the Levo – her systolic blood pressures are in the 120’s whereas they would probably be in the 70’s without it. As she gets closer to the end she will need higher and higher doses to maintain her blood pressure. Other pressors can be added as well. Since most pressors work by causing peripheral blood vessels to constrict, thereby preserving core circulation, high doses will cut off blood flow to the arms and legs almost entirely. The pulse-ox sensor (for measuring blood oxygen levels) will no longer read on the patient’s finger and will need to be moved to the earlobe and then finally to the forehead. If Mrs. Hardy had a “no pressors” stipulation, she would probably have died already. With unrestricted use of pressors, she may live another three weeks or so. This time will, without a doubt, be spent in coma. Of all the different types of interventions, people in general have the most difficulty understanding the evils of pressors. It is easy for families to say “no shocks, no chest compressions,” but what is wrong with a little medicine to keep the blood pressure up? Mrs. Hardy is anyhow still a full code. It will be a few more glorious weeks.

Mrs. Hardy now has three types of virulent bacteria and two types of fungus in her blood as well as in her wound, lungs and bladder. Essentially, her body has already started to rot systemically. She is also rapidly developing contractures. Her right hand is bent at a right angle at the wrist and at the fingers so that her finger tips are almost touching her forearm. Her elbows and knees are also folding up. She still “opens her eyes to command,” which means if you say, “Mrs. Hardy! Open your eyes!” she does so. She is otherwise unresponsive.

This week is the first week of the year for the doctors. The interns are now fresh out of medical school and the residents are fresh out of their internships. I listen to rounds to see how Mrs. Hardy’s case will be presented to them. It is acknowledged that her case is hopeless and that it would now be a good time to discuss limits on care with her family. It is not mentioned that the same has really been true for the last three months. None of the efforts of the palliative care team are mentioned. Mrs. Hardy’s desires regarding her own care are not discussed. There will be a family meeting in the afternoon. The SICU attending (head physician), Dr. Lew, expresses that he is personally uncomfortable with the principle of withdrawing care, but feels that not escalating care would be appropriate at this time. The plastic surgery team has been Mrs. Hardy’s primary service, and they will also need to be present at the family meeting. Dr. Lew questions the plastics resident, who has come by for rounds, to see if everyone is on the same page for the meeting. They are not. The resident announces that her attending has taken a “special interest” in Mrs. Hardy. They want to give the antifungal medications a week to work and they want to try a third skin graft. The second skin graft turned to mush in two days and Mrs. Hardy’s abdominal cavity is full of slime. There is no chance that a third one will be successful. The skin for the graft would be harvested from another part of Mrs. Hardy’s body, which would leave another painful wound. Why put her through another operation? The resident is questioned and responds philosophically. She speaks about offering all possible treatments and not abandoning hope. I find myself wondering what the real reason is – are they looking to send out more bills? Do they want a safe practice case for the beginning of the year? I do not understand it, and I am not alone, but then that is nothing new either.

From the beginning, there has been a quiet consensus among the nurses that Mrs. Hardy should be allowed to die without all of this torture. We now speak about it openly. It is really time to let her go now. We share what we know about what is going on. The family is the main obstacle at this point. While it is true that they have received conflicting reports from the doctors, the feeling is that they have been told directly enough and often enough about what is happening that they ought to understand their mother is dying. Even the plastic surgery attending is said to have told them months ago that there was no chance of her getting enough nutrition to enable her to heal. Mrs. Hardy’s children have not come to see her for three weeks (she was talking back then). They are still waiting for her to get better and come home.

Susan, the palliative care nurse, arrives on the unit mid morning to prepare for the family meeting. “You’ve got to set them straight, Susan.” I say, lightly. I spoke too softly and she does not hear me properly, “What did you say? I’ve got to castrate them?” I laugh, “That’s not what I said, but I like that better.” Susan plans to be as direct as possible with the family. She says that the oldest son gets it, but that the younger son and daughter (youngest) do not. After the meeting she feels she has reached the daughter, but the younger son remains adamant. He claims that before all of this started Mrs. Hardy said she would want everything possible done. What are her wishes? She has said different things at different times. To the nurses she has spoken often of her desire to end her suffering, but she has not spoken to her family in this way (some would say because of being intimidated). She has also been more inconsistent with the doctors. The differences may be attributed to the amount of time we spend with her as nurses. We are also the ones who inflict the most pain on her during her care. We are the ones who turn her and clean her. For now, Mrs. Hardy remains a full code.

Later in the day, the plastic surgery resident returns to talk with the new ICU fellow about a skin graft (fellows are senior to the residents and junior to the attendings). He reiterates his misgivings about performing this procedure at this stage of illness. The plastics resident repeats the philosophical line she has received from her attending. The fellow shrugs. He disapproves, but it is not his call. He does put the procedure off though. Mrs. Hardy is on Levo, which denies peripheral circulation – the graft would not have a chance. “When she has been off pressors for a couple of days, you can take her.” Well spoken.

This is a Dangeous Place

2008-06-30T02:57:00.000-07:00

Mrs. Smith, in good health in her early seventies, was working in her garden at home when she was bitten in the arm by a rattlesnake. She used her shovel to chop it up into several pieces and brought it with her to the hospital. Someone it the ER identified it as a diamondback rattlesnake and an urgent call for anti-venom was sent out. Diamondbacks are extremely rare in this area, and the needed doses of anti-venom had to come from several different places. To administer the anti-venom a subclavian central line was inserted. This is a large IV that is inserted into the subclavian vein which runs beneath the clavicles towards the heart. As soon as central access was obtained, the anti-venom was started. Mrs. Smith immediately developed respiratory distress and was intubated (placed on mechanical ventilation) to protect her airway. She was then sent to the Medicine ICU, where I received her, for management of a suspected anaphylactic reaction to the anti-venom.

I had never cared for snakebite before and did not know what to expect. There did not seem to be much to be concerned about. Mrs. Smith’s arm was a little red and not particularly swollen. Although she was not able to speak with the breathing tube in her throat, she was clearly very awake and aware of her surroundings. She nodded appropriately in answer to questions and her eyes expressed calmness and understanding.

A chest X-ray had been taken shortly after Mrs. Smith’s arrival and within an hour or two the resident read it and came to her room to tell me that she had a pneumothorax. During the placement of the central line, the doctor had accidentally punctured her lung with the insertion needle. Her left lung had collapsed like a punctured balloon. Mrs. Smith now needed a chest-tube. Perhaps she had not had a reaction to the anti-venom at all.

The thoracic surgeon who came to insert the chest tube was calm and unhurried. It is a simple, low risk procedure and Mrs. Smith was quite stable and already on the vent. I stayed in the room to observe and assist. After administering lidocaine to numb the area, the surgeon began with an incision in her left flank. “Okay sweetie, this is gong to be the worst part,” she said as she made a hole, widened it and inserted the flexible plastic tube. Mrs. Smith winced. “Okay, this will be the worst part,” said the surgeon as she advanced the tube further into Mrs. Smith’s chest. Mrs. Smith winced again. “Okay, this is going to be the worst part,” said the surgeon, authoritatively, as she gave the tube one final push into Mrs. Smith’s lung cavity. A look of distress came to Mrs. Smith’s face, as if her breath had just been taken away. The surgeon reassured her, “I know that feels very strange sweetie, but that is the feeling of your lung re-inflating. It is a good thing. The surgeon finished up with a stitch or two. I attached the other end of the tube to a drain and attached the drain to a wall suction unit with a clear plastic hose.

The next day during physician rounds one of the residents was suspicious. He had done is internship in Texas and had seen diamondback bites before. Mrs. Smith’s arm should have been extremely swollen. She should have been much sicker. The story about the snake seemed wrong also. Diamondback’s tend to give warning before they strike and this snake had bitten without giving warning. The resident found pictures of timber rattlesnakes, much less poisonous and much more common in our area, and showed them to Mrs. Smith and to her family. They could not remember the snake very well, but seemed to confirm the resident’s suspicions. The body of the snake had been disposed of at the other hospital.

The doctors discussed what to do. Since they did not have the body of the snake and could not make a conclusive identification, and since Mrs. Smith was not being harmed by the diamondback anti-venom, the doctors decided to give the remaining two doses and leave it at that. If everything went well for Mrs. Smith and she did not develop a pneumonia or get an infection, it would take her a week or so to get off of the ventilator and get the chest tube out.

Poor Mrs. Smith - if she has stayed home all she would have had to deal with would have been a sore arm. She came to the hospital and we punctured her lung, gave her the wrong medicine, and put her on mechanical ventilation – all without so much as an ‘excuse me.’ I am sure she was grateful for the excellent care she received. I hope her insurance paid the bill. It must have been over a hundred thousand dollars. Oh yes, hospitals are dangerous places.

Mrs. Hardy update

2008-06-27T03:56:00.000-07:00

Mrs. Hardy no longer looks at me with imploring eyes as I stand at the entrance to her room. She does not wave her hand for me to come and visit. She is comatose most of the time now. Her face points towards the ceiling. Her eyes are closed or sometimes blankly open. A light blue-green cooling blanket is spread on top of her body to control her fever. I keep looking on her IV pole for a pressor (blood pressure drip), but so far the doctors have been able to correct her periods of low blood pressure with IV fluid boluses. She is on an amiodarone drip (an anti-arrhythmic), so presumably her heart was not beating regularly without it. She is starting to “circle the drain” as we say.

After all this time Mrs. Hardy is still a “full code.” She has no advanced directives in place that would limit the measures that will be used to “save” her when her time of death arrives. By using pressors we can probably give Mrs. Hardy a few more weeks of suffering. If there was someone who could tell us that we did not have to use pressors, Mrs. Hardy would probably die in a few days or so. When the time does come we will probably push an amp or two of epi and atropine and maybe do a few cycles of chest compressions, but this will be mostly so that we can say we did it all. There will not be much point to it. Or else perhaps the family will finally relent at the end. One of my nursing preceptors used to say, “I hope my family does not love me this much.” Yes indeed. I have not seen Susan, the palliative care nurse, on the unit for the last couple of weeks. She probably reached a stalemate with the family and will probably be back around closer to the end. Come to think of it, I have not seen the family for weeks now.

This week my patients are not on the same special isolation precautions as Mrs. Hardy is, so it would be against the rules for me to go into her room. If I did, I might bring her bugs back to my patients. I ask her nurse, P, if she is still waking up, and she says that she is. I am friendly with P, so we chat about whether it is better to live in the city or the countryside as P goes into the room to fix Mrs. Hardy’s arterial line (A-line). P has a strong Chinese accent, and feels more at home in the city. The people in more rural areas make her uncomfortable and she asks me what I think about it. As I answer (somewhere between the city and the countryside, but definitely not the suburbs would be my preference), I notice there is no longer a sitter in Mrs. Hardy’s room.

Mrs. Hardy has an A-line in her left radial artery (left wrist) which is used to constantly monitor her blood pressure and also as an easy source for blood samples to send for labs (at least once a day). A-lines can last anywhere from a few days to a week or two before they need to be replaced. Mrs. Hardy’s is now positional – if her wrist is not flexed in the right way, the blood pressure does not read. P moves Mrs. Hardy’s wrist restraint onto the her hand, loops it over and reties it so that Mrs. Hardy’s arm is slightly twisted with her palm facing up and her hand pulled back. This works for the time being. The alternative would be to take this one out and have the doctor’s try for another one.

As P ties the restraint, Mrs. Hardy opens her eyes slightly, as if from a deep sleep, to see what is going on. After a moment she closes them again. This, apparently, is what P means when she says Mrs. Hardy is still waking up. It is all so normal for us.

Mrs. Hardy cont.

2008-06-22T06:07:00.000-07:00

Last week Mrs. Hardy was doing so well that the doctors were talking about sending her out to an intermediate care unit. This week that talk has evaporated. She has another blood infection. What the rest of us would consider a brush with death is now a weekly affair for Mrs. Hardy. Her now leathery, yellow-grey face twists into an expression of helpless distress as beads of sweat run down from her forehead. As I look in, her eyes beckon me to come closer. I cannot go right now though, my patients are busy today.

A student nurse, named Joe, who has taken an externship, is assisting Mrs. Hardy's nurse today. At one point he gets up from his chair and moves a few feet to the entrance to the room. I observe him talking with her. “Just relax Betty…You can’t relax?... What’s wrong?... Tell me what the problem is and I will help you.... You can’t tell me?... Well how am I supposed to help you if you can’t tell me?.... I can’t help you if I don’t know what the problem is. I want to help you Betty, but you just need to relax. When you are ready to tell me what is wrong, I will come back and help you.” Joe is new and seems to feel he has discovered something profound – Mrs. Hardy really needs to understand how she fits into his reality. Then he will be able to give her what she needs and she will also not bother him unnecessarily. Will he spend the rest of his nursing career refining this philosophy, or will something touch him more deeply one day?

Mrs. Hardy’s nurse, John, asks me to come and assist with a cleanup. He thinks she may have had some stool. What remains of her large bowel is not attached to anything, and she has stopped even passing mucous months ago, so this is probably not a good sign. As we get ready to turn her, Mrs. Hardy becomes agitated, bracing herself for the agony of yet another turn. “What are you doing? How long will this take?” she asks urgently. As we pull her up onto her side she yells, “Oh Lord! Please help me Lord!” She calls out, “How close am I to death?” and “How much longer do I have?” and all we say to her is that we will be done soon. We are focused on the puddle of blood that she was lying on. It is about two cups, bright red and mixed with mucous. It looks like Jello in places. We start wiping it off of the thighs and buttocks while John calls the resident to see. The doctor explores the situation, provoking more protests from Mrs. Hardy. We do not tell her what we have found, although she can probably figure it out. Why give her more bad news? We finish cleaning and change the sheets. The doctors will stop her heparin drip. Apparently this has happened once before. The heparin is used to stop more blood clots from forming in her large veins, but she will have to do without it now. Profuse rectal bleeding trumps DVTs today.

More On Mrs. Hardy

2008-06-14T17:53:00.000-07:00

The next week my patients were on the other side of the unit. I walked around the corner occasionally to look at Mrs. Hardy and check her monitor to see if she was maintaining or getting worse. She has been getting stronger. Once as I approached her room I heard her voice. She must be breathing on her own now and speaking with the help of a special valve which is placed on the opening of her trach. It has been months since she could speak. Getting her voice back is no small thing, but the voice I hear is full of madness. “No! Don’t! Don’t do that!” she screams, her voice full of panic and fear. Her nurse, Tom, speaks in a soothing voice, “Now Betty, I just have to put your restraints back on because you are not able to make safe decisions right now. You are pulling on your tubes and things and I just can’t let you do that okay? But don’t worry about it, it’s alright (I am not angry with you and you should not feel ashamed). Who will listen to her in this state of mind? No one. She will not be able to participate in her care any more than before.

It becomes more and more complicated the closer you get to it. The next week I catch Susan, Mrs. Hardy’s palliative care nurse, as she is sitting outside her room, reviewing her chart. I ask her what is going on and she tells me she is working on meetings with the family. “Any chances of them letting her go?” I ask. “Well she does not want to die, so withdrawing care would be unethical,” comes the reply, a gentle chastisement, “but we are trying to give them a more clear sense of what her real situation is, and maybe we will be able to place some limitations on her care.” This would mean stipulations like ‘no CPR’ etc.

Everyone wants to get better. Even in the course of our normal lives we are generally dissatisfied with today and hoping for a happier tomorrow. Mrs. Hardy does not want to die. Of course not, she wants to get better. So withdrawing care is out of the question, but then she is not going to get better. In the best case, she will never get out of bed again. She will perhaps go to a skilled nursing or long term care facility until she is overcome by infection. She will be in and out of the ICU until she dies.

Would it really be unethical to withdraw care? I am not so sure any more. I have no urge or eagerness to go into Mrs. Hardy’s room and turn off her machines, but when you consider the resources that are being expended to keep her alive in this state it is staggering. The bed in the ICU alone is somewhere between one and two thousand dollars a day. Then there are the doctor’s fees, fees for every surgical procedure, every x-ray (at least one a day), every scan, and every consult, on and on. This has been going on for several months now and Mrs. Hardy is not going to get better. As nurses we do not have to worry about the expense of it all, but if you think about resources as being limited instead of unlimited, is it really the best decision to expend so much to achieve so little? And if the family really had to pay for it all, would their psychology not change? We spread it out with insurance costs. We give perhaps a quarter of our income for health insurance policies that often do not even cover our day to day expenses. What are we paying for? We are paying for Mrs. Hardy’s care, make no mistake about it.

We are trapped by technological advances. If you can do something, who will decide whether you should do it or not? The doctor? The family? No one wants to say “no,” so we do everything regardless of the expense and the consequences. Would it really be unethical to stop Mrs. Hardy’s care? Maybe not, but I will not be the one to stand up and say so. What fault does she have? She seems to be a nice lady.

The following week my patients are Mrs. Hardy’s neighbors. They have the same hard-to-treat bacteria that she does, and since we are trying to stop it spreading around the unit, the nurses for these patients are not supposed to go into other patient’s rooms and visa-versa. This week I visit with Mrs. Hardy a few times.

As I enter her room she holds out her hand and I give her mine. “Are you tryin to get yourself a man there?” jokes her sitter, a short middle aged woman with obviously limited mental capacity. The sitter seems to see Mrs. Hardy almost as her doll or her pet and talks at Mrs. Hardy without being concerned about her true reality. This is quite common actually – who really wants to think about it too much after all. I ask Mrs. Hardy how she is doing and acknowledge how hard it must be. She seems to appreciate this. She rolls her eyes slightly when the sitter mentions her family. They are probably as unreachable for her as anyone else in some ways. As I look at her, I am thinking about my writing. Should I tell her about it? Would she want to know? Is it egotistical for me to think of myself like this when I am with her? But maybe it will be comforting to her to know. “Mrs. Hardy,” I say, “If someone could tell your story, would you want it to be told?” She lifts her head off the bed and nods emphatically (she is on the vent today, so no talking). “I am trying to write about it. I will try.” I say. She squeezes my hand.

The next day I visit with her she is breathing on her own. I decide not to say anything about our previous conversation. I am not sure if she even recognizes me or if she is simply pleased to have a visitor. She is trying to say something. I put her speaking valve on her trach. “Please give me water! Please! Just a little! It won’t hurt! Please!” Her pleading is like that of a scared, desperate child’s “I’ll have to check with your nurse.” I answer dutifully and I start to feel trapped in a way one often does as a nurse. I start to regret having extended myself. There will be no end to this kind of thing. But I look around the room and see some swabs. Mrs. Hardy is right; a little water will not hurt. I soak three of the little green sponges-on-sticks under the faucet in her room and bring them to her, holding them to her mouth so she can suck and chew the water out of them. She thanks me profusely and then asks me urgently to call her son. She tells me that there are important papers she needs to tell him about. Most likely, she has already told him many times and there will be more opportunities as well. I will not bother him. If I was her nurse, I would mention it to a family member when they called to check. Mrs. Hardy’s family does call at least once a day. “I will let your nurse know.” I assure her. Mrs. Hardy fades. She stares blankly into the room, overwhelmed with fatigue and hankering, she drifts slowly towards sleep. She is asleep most of the time. I forgot to tell her nurse about the papers.

Let Me Go (Continued from previous post)

2008-06-02T09:16:00.000-07:00

Mrs. Hardy was only my patient twice, both times before she had awakened. I see her sometimes for turns though, since she is one of the larger patients on the unit and changing her bed sheets is a four person job. One of these times sticks in my memory.

I had arrived first in the room and stood on one side of the bed with my isolation gown and gloves on. Her nurse, named Hope, stood on the other side. We needed two more people to start. Seeing us, Mrs. Hardy started to mouth words urgently. It is very hard to read lips and most of the time the patients are either mad or unable to adjust to their circumstances. A lot of time can be wasted trying to figure out what they are saying and often nurses do not bother. We know they are saying “Don’t turn me! It hurts!” But we have to do it anyways and we don’t have to convince them first. All four of us will be having other things to do after this. We just have to get it over with.

There were only two of us though and I do try to be above average in making an effort. It looked like she was mouthing, “I want do die,” so I repeated those words back to her. Hope leaned over “You want to die?” it was something else “I want (something)” over and over. “You want water?” She does, but that is not it. She knows she can’t have any. “You want something for pain?” No. “You want to change your position?” No. Hope figures it out, “You want to go outside? You want to go outside. Well Honey, nothing is stopping you, go right ahead. I won’t stop you. The only problem is I can’t do anything for you. I am not allowed to help you.” Hope is not trying to be cruel, she is just searching for the right words to explain that this is not a request she can consider and she knows there is no one else Mrs. Hardy can ask. In the end, Hope can’t be bothered with things like this. It is not her job. I think of how her words might sound to Mrs. Hardy and try to change the subject. “Good thing we did not turn off the vent.” I joke. Hope replies that she was saying she wanted to die earlier though. Mark and the tech arrive now and want to know what the joke was. I start to explain, but then I stop myself. This is probably not so nice for Mrs. Hardy’s ears either. I want to redeem myself. I look into her eyes and start to talk to her. “We are going to turn you now Mrs. Hardy. We will try to be quick.”

It is hard to explain the agony a turn can be for an ICU patient. Lifting one finger hurts them. Hope hands me her left arm (I am on the right side of the bed) and the tech grabs her left leg and we pull. Mrs. Hardy resists and we pull harder. When we have her halfway over, Mark and hope pull on the sheet beneath her to rotate her hips farther. Mrs. Hardy can reach the right bedrail now and hangs on as best she can to help us. She is frantic from pain (what does it feel like to be turned on your side when you just have a big hole stuffed with bandages where your guts once were?) And she can barely breathe in this position. Her face turns bright red and then starts to go bluish. “We are almost done Mrs. Hardy. Hang in there.” She flails around as much as she can, but she is very weak, she cannot do very much. Hope finishes wiping her back down and she and Mark begin to thread the roll of new sheets and absorbent pads under her various tubes and wires. I bend down a little to look into Mrs. Hardy’s eyes. “How are you doing Mrs. Hardy?” Her face is scrunched up and her eyes full of anguish. “I’m scared! I’m scared!” she mouths quite clearly. I see that she is talking about more than just the turn. This is her life and it is unbearable and there is no escape. “You’re scared,” I repeat, partly so the others can hear what she is saying. “I understand,” I say, “You are in a very tough situation Mrs. Hardy. It must be so hard.” I feel I have offered her something by saying this, though it may be precious, pathetic little. At least I am listening. At least someone understands her and feels for her if only just a little bit. Why say it will all be okay, when it won’t and it isn’t? How lonely it must be. Everyone else can pretend, but Mrs. Hardy has to experience it all - helplessly and all alone.

Let Me Go (continued from previous post)

2008-06-01T06:02:00.000-07:00

After another week Mrs. Hardy did wake up. The sedatives in her blood finally cleared, or the toxins from her sepsis metabolized, or else her brain tissues cleansed themselves somehow and she returned to normal consciousness. She awoke to find that her guts had been scooped out. Her body was now maintained with Total Parenteral (IV) Nutrition or TPN – 2 bags of IV fluids; a large clear yellow one and a smaller opaque white one that are changed every day. TPN increases the risk of blood infections and harms the liver and kidneys over the long term. The closest thing to stool her body now produced was a greenish brown fluid that drained from a tube that had been inserted through her ribcage just below her right breast. She could wiggle her toes, but otherwise had no use of her legs. She could lift her arms off the bed by herself and so these were tied down to prevent her from disturbing her artificial airway. She was trached and vent dependent (the ventilator hooked up to a tube in her throat) and so she could mouth words, but could not speak. She had received a minimum of pain medicine for weeks because her fentanyl drip had been blamed for her altered consciousness. Therefore it is not at all surprising that as soon as she regained the capacity to communicate she straightaway began to ask for death. She was not my patient anymore, but I heard it from the other nurses. As soon as she woke up she asked to be allowed to die.

I seriously doubt anyone told her that her intestines were gone, or what her prognosis was, but I imagine you can sense these things. I expect it was as clear to her as it was to her nurses that she was not going to get better. Who would want to live in that condition? Why force her?

But it is not so easy. It is not easy for a family that has only been waiting for good news to hear that their loved one wants to leave them. It is harder still for them to give the instructions to let her go. It is hard for the doctors to admit to the family that her case is hopeless and easier for them to talk about what they can still do – “We can treat this infection with antibiotics. We will take her to the OR to clean out her wound. She has responded well to the treatment.”

It has been a month now since she woke up and not much progress has been made towards granting her request. A palliative care physician saw her and proclaimed that her poor nutrition status was the underlying cause of her discomfort. She was septic at the time, on blood pressure drips called pressors with systolic blood pressures in the 70’s. I joked with her nurse, “I think she needs some more nutrition Mark.” And we laughed. More seriously then I vented my frustration. This guy should be advocating for her. Adjusting treatments with a view towards maximizing comfort is all well and good, but Mrs. Hardy is in a hellish condition and wants to go now. I heard afterwards that, perhaps under the nurse’s questioning gaze, the palliative care doctor came to the conclusion that Mrs. Hardy was just dieing slowly. Shocking. He did not feel the need to speak with the doctors or the family about these conclusions.

When a patient wants to die, certain questions have to be asked. Is she in her right mind? If not we do not listen. Is she saying this because she is in pain? If so we have to get her pain under control first? Is she depressed? A person who is depressed is not in a good state of mind to make decisions about ending her life. Time for a psych evaluation.

Psychiatrists tend to stand out on the ICU. They tend to be disheveled and quirky and oddly dressed. Once I saw one come to work in her pajama bottoms. The one that came for Mrs. Hardy had untamed white hair and wore an old suit. Other nurses told me he made them nervous. After seeing Mrs. Hardy, he called for her nurse –it was Lynn today. He began to speak with Lynn at some length about Mrs. Hardy’s emotional state. Lynn cut him off. What was the use of talking about her emotional state? What difference did it make? Lynn was done thinking about her emotional state. Mrs. Hardy wants to die and everyone is ignoring her. What will that do to her emotional state huh? During their conversation I was making bets with the other nurses that all that would come of the psych evaluation would be that Mrs. Hardy would be placed on suicide precautions. We had just seen this with another patient. Suicide precautions means a sitter at bedside 24/7 to make sure the patient does not harm themselves. I think the psychiatrists think they are doing a good deed by providing the patient with some company in this way, but sitters are usually no company at all. They just turn on the TV and endure the boredom. You cannot even untie the restraints.

Susan, the palliative care nurse came by in the afternoon. I mentioned the psych visit and she looked in the chart for his note. He had recommended antidepressants, but Mrs. Hardy has no gut to absorb them with anymore and they do not come in IV form. “These Psychiatrists are all useless.” I say to Susan. “Do you know that everyone in this hospital says that?” she replies with some surprise in her voice. Lynn tells her that she spoke with the family on the phone and told them Mrs. Hardy was asking to die. “Is she back to talking like that again?” was the reply. “What do I say?” “Tell them it is more and more often.” Susan says. She complains that the doctors are not telling the family the hard truths. “I really feel like we are just torturing her now.” She says.
TO BE CONTINUED

Let me go

2008-05-31T06:23:00.000-07:00

Mrs. Hardy is quite clearly doomed. She had a gastric bypass operation (she weighs more than 400 pounds). If anyone knows whether the hernias she developed afterwards had anything to do with the surgery, they are not saying. We have our suspicions. In any case, the hernia repairs left her with infected, perforated bowels which did not get better. When I first took care of her, all but 30 cm of her small intestines had been removed. For a couple of weeks she had been opening her eyes and looking around the room, but had been unable to respond to her name or connect with anyone. The 3’X 4’cavern where her guts once were was now filled with black vacuum sponges and covered with an airtight dressing. Two suction tubes hooked into this dressing pulled about a liter of pinkish yellow fluid off every hour and it was the nurse’s responsibility to measure this and infuse an equivalent amount of IV fluid every hour of so to prevent her from becoming dehydrated.

Any nurse knew within 5 minutes of starting to take care of Mrs. Hardy that she did not have a prayer of getting better. We see it all the time. This is going to be nothing but a long, drawn out, agonizing death. A nurse of some experience once explained to me, without any malice, that morbidly obese patients are like whales and the bed is the beach. The longer they are trapped in bed, the harder it is for them to get back up. In bed they develop sores, their muscles waste away, infections set in and they end up “circling the drain.” So when I heard in report that Mrs. Hardy had been listed for a small intestine transplant, I was disgusted. This would be nothing short of a science experiment. She was already too far gone to get better even if her intestines were intact. There is something very evil about the whole transplant industry, but I will write about that another day. I decided to make it a priority to get the palliative care team involved in managing her end of life care

Mrs. Hardy’s pain medications had been stopped more than a week ago when it was noticed that she was not responding. Still no change. I got into a difficult spot with the attending physician when, upon being asked, I mentioned the possibility of brain damage to the family. I expected that, after more than a week, I would not have been the first to do so, but Mrs. Hardy’s daughter had become alarmed. “Brain damage! No one has said anything about brain damage!” I went with some urgency to try to get the attending to speak with them and was chastised. All of her brain scans were negative for damage. Her condition was related to her blood infections and although it might well be permanent, I should not have said “brain damage.” He was annoyed at this extra task I had now forced on him. I thought about how I could have said it differently, but could not come up with anything.

The palliative care nurse, Susan, came by in the morning to see another patient (palliative care is often busy in the surgical ICU) and I caught her in the hall. I gave her a quick summary and my conclusion that Mrs. Hardy should not be used as a guinea pig. She agreed and asked me to page her so that she could be present for rounds. I did so, and when the physicians were discussing Mrs. Hardy’s case, Susan asked directly if they felt it was appropriate for her to be involved. The attending physician replied very much in the affirmative. Even if everything went perfectly, Mrs. Hardy would still have no quality of life.
TO BE CONTINUED

Anything important to say?

2008-05-26T10:49:00.000-07:00

Mr. Lewis had been an alcoholic and a house painter. The two had not mixed well for him when he fell off his ladder, broke his neck, and became a quad. While he could not move his arms or legs, he still had sensation. Unable to breathe or swallow on his own, he was “trached and pegged” – a ventilator tube in this throat and a feeding tube directly into his stomach. He was a “clicker.” Because of the sore on his behind or his past tendencies or maybe just his personality and a need to feel some sort of control over his fate he would constantly click his tongue to call his nurse or anyone who happened to be passing by to his aid. He wanted to be drugged as much as possible and watched the clock, keeping track of the time for his next dose of narcotics. Every two hours, about ten minutes before the dose was due, he would start to click even more. Even the most obliging nurses quickly become exasperated with this type. You cannot walk by the room without being called in, and in the end, there is not much more you can really do for them. You have another patient and other work to do. You draw the curtains so he can’t see you and avoid going in the room more than necessary. Coming up behind his nurse and clicking your tongue (it is an easy sound to imitate) elicits rolled eyes and a look that says, “he’s driving me crazy!”

On a day when he was my patient some family came. They asked to have the cuff on his trach let down so he could talk. He was being weaned from the ventilator and was breathing on his own for a couple hours at a time. If the seal around the trach was deflated, he would be able to force air though his vocal chords and speak. Not sure of his stage, I went to find the respiratory therapist. Today it was someone I had not seen before, and I would not see her again either. “Mr. Lewis would like to have his cuff down so he can speak.” I said as she sat at one of the computers at the nurse’s station. “Why?” she shot back, “Does he have anything important to say? Like ‘withdraw care?’” It is a familiar sentiment, although not often expressed so directly. A bit hard hearted for my tastes, but remember, we are all paying for the millions of dollars worth of healthcare that Mr. Lewis is receiving (this is why health insurance costs so much) and the guy screwed himself up and doesn’t even appreciate any of it.

I half played along and smiled, “Okay, I will let his family know you said that.” I made as if to head back to the room. We exchanged friendly, communicative looks and I went back to the room. “The respiratory therapist is on her way.” I said.

Feeding Tube

2008-05-14T03:26:00.000-07:00

Mr. Smith had a large blood clot in his brain. He had come to the SICU to be evaluated for an experimental procedure where a catheter would be advanced through blood vessels to the brain and a clot digesting enzyme would be injected directly into the clot. It did not take a brain surgeon to know that this would be an extremely high risk procedure. The enzyme, Alteplase, is used most commonly as an emergency intervention for heart attacks. The principal danger of using it is that it can cause head bleeds. The thought of injecting it directly into an area where there was already a bleed was giving me pause. I do not know very much about brain surgery though, and I was waiting to see how things would unfold. If the procedure was going to be done, there was only a 48 hour window after the initial bleed to do it in. Less than 24 hours of that window remained when I began taking care of Mr. Smith. He would need a CAT scan with injection of IV contrast to map out the blood vessels in his brain. This would require a good IV in Mr. Smith’s arm, but we had not been able to get one so far. I asked for help from the techs and nurses who were “good sticks” and they tried again and again, but no one was able to find a vein.

As the doctors rounded on Mr. Smith my suspicions seemed to be confirmed. The surgical Attending, the senior doctor on the unit expressed disapproval. Mr. Smith had left sided paralysis, but was mentally intact. There was some chance of making him a little better, but a good chance of making him a lot worse. The resident was undeterred in his enthusiasm, however, and I sensed the involvement of another team of surgeons who were not now present. Perhaps this was why the attending stopped short of calling off the procedure outright. One has to know the limits of one’s influence and choose battles wisely. His objection now registered, the attending shrugged his shoulders and moved on to the next case.

The resident now came to Mr. Smith to get consent for the procedure. He spoke in simple terms of the clot in his brain. Mr. Smith knew about the clot in his brain. The resident made his pitch, “What if I told you that I could get that clot out and all I would have to do was make a small hole in one of your blood vessels?” My jaw began to clench, but then Mr. Smith belted out, “No invasive procedures!” as if he was burping. The resident tried again, but Mr. Smith only repeated his mantra adding that he was an old man (he was in his mid seventies) and that he did not want to take any such risks. The frustration registered on the resident’s face and it was ugly. He shifted his weight from one foot to the other. It was as if he had spent $100 on dinner and his date was now refusing to even kiss him good night. He protested, “It would just be a little hole.” He held up his pinched fingers to show how small the hole would be. “No invasive procedures!” It was clear and final. The resident gave up and left the room. We would not need to get that IV any more.

I had refrained from expressing my doubts about the procedure to Mr. Smith, but I still felt the proud parent speaking to him after the resident had left. “That was an experimental procedure he wanted to try on you Mr. Smith. I think it was right of you to turn him down.” This was maybe saying too much. I was getting caught up in the moment. I was happy to finally have a patient with some sense of the dangers of doing too much and some capacity to accept the inevitable end of his life, but we had just met and I needed to be more careful. I would soon be in an awkward position myself. Mr. Smith accepted my words happily enough. “All I need is something to eat. They haven’t given me anything since I got here. I’ll feel much better after I eat.”

I told him I would work on it, but this was going to be a big problem for Mr. Smith and he did not realize it. The few pills I had asked him to take had not gone down well. He would need to have his ability to swallow properly examined. Small amounts of food going down into the lungs with every mouthful means pneumonia and death in short order. If Mr. Smith failed his swallow evaluation, as I suspected he would, he would most likely not ever be able to eat again.

I had the doctors put in for an evaluation, but it took a long time for the speech therapist to come by to do it. Mr. Smith complained of his hunger to everyone who came by. My shift ended. I was back again the next day and I called Speech Therapy to see what the hold up was, but my heart was not in the fight. Soon I would have to stop giving him even sips of water. They came and did the swallow evaluation and Mr. Smith failed. I told the doctors and they told me to place a feeding tube. This is a minor procedure that is regularly performed by nurses, so it also fell on me to explain the situation to Mr. Smith. I gathered supplies and went into his room. I told him how he would no longer be able to eat and that the doctors had told me to put a tube through his nose down into his stomach so that we could give him some nutrition. Mr. Smith’s face quickly became flat. His previously exuberant communication was replaced with small, difficult to interpret gestures. I told him I did not have to place the feeding tube if he did not want it, but that it was the only way to give him nutrition for the time being. I looked into his eyes and asked, “Do you want the feeding tube Mr. Smith?” I badly hoped he would say “no,” but how could he? He was not ready to starve to death. He let his head come forward just slightly in a nod of consent. I prepared the feeding tube with lubricant and began to insert it in his right nostril.

Feeding tube insertion is one of the most uncomfortable things nurses do for their patients. Judging by the distress it causes it is much worse than urinary catheter insertion. As the tube hits the sinuses even the most self controlled patient will jerk his head away and grab for the nurse’s arm. For confused patients three nurses are sometimes needed; one to hold the arms, one to hold the head, and one to insert the tube. Once the tip of the tube reaches the back of the sinus it has to turn at almost a right angle to go down towards the stomach, which is accomplished simply by pushing with some force on the tube at the nostril. This is the most painful part. After this some care has to be taken so that the tube does not go into the lungs. I pull Mr. Smiths head forward, tucking his chin towards his chest and order, “Swallow Mr. Smith! Try to swallow!” He complies. Tears glide down his face, but the tube goes in without too much trouble. I tell myself that it is good that I am doing this for him, that another nurse who does not know him might be rougher on him, but I am thinking, “I hate my job today.” With this little tube, so much is being taken from him. More than he can even realize. And it is me doing it to him. I have to do it. It is my job and if I leave it for the night nurse, she will only be angry with me.

By the time the X-ray tech comes to take the X-ray which will be used to check the placement of the feeding tube, Mr. Smith has already pulled it halfway out. I push it back and the X-ray is taken. I put a wrist restraint on his good arm and tie it loosely to remind him not to pull it and talk to him about it. His expression is totally flat now. He does not even nod. I regret my previous feelings of camaraderie with him. I am his prison guard now; his oppressor. He only has one good arm left and I am tying it down. I have no right to ask for his friendship. In an hour or so the tube is out again. I put it in again and call for another X-ray. I ask him again if he wants the tube or not. If only he would give me some negative sign. Nothing. I tie his wrist restraint tightly, so that he cannot lift his arm off the mattress. There is no other option. Those who say there is have never done this work. I wish it was not so. This will be his life henceforward. Maybe next time I will leave it for the night nurse to do.

Talking About a Revolution

2008-05-13T08:43:00.000-07:00

I ran in to an acquaintance over the weekend that had been pursuing a degree in nursing. He had changed course after spending some time in a hospital. He said it was not the kind of environment he wanted to work in or be in. I think I understand. I also do not like the environment. It is not because of all the blood, mucous, vomit and stool that I have to manage and clean up on a regular basis – human bodies have only a limited repertoire of grossness and you acclimate to that in the first few weeks. It is the soul crushing machine that is the modern medical system which is truly opposed to any values or sense of aesthetic I may hold. Still, I like it. I feel alive and engaged at work. I have been thinking about why, and now my friend has me thinking more. In general, I think the ICU appeals to people because of the excitement. One gets to watch holes being drilled in skulls, abdomens being sliced open, emergencies responded to. Codes (when emergency resuscitation i.e. shocks compressions etc are carried out) are always somewhat thrilling because everyone is activated and working as a team. Never mind that the outcomes of codes are usually less than inspiring. Then there is the responsibility. As you work, lives depend on you in a very real sense and while this cuts both ways, it does give a feeling of importance. Some people (not me) are also enamored with the innumerable gadgets we learn to run. And then there are those who just want to help make people better.

While all of these apply to me to some degree I find that what I most value are the frequent opportunities to engage in righteous rebellion. Now, I am not talking about a rebellion against death. Often the problem is that someone who needs to die is not being allowed to die. Neither do I have any interest in killing people off. I have no desire to take that responsibility into my own hands. Rather, what I see and fight against is simple ignorance and lack of information. The representation of healthcare in mass media is so false that people often have no clue about what is really happening around them. They watch their loved ones waste away in agony and misery waiting in vain for some TV doctor to burst in and announce that he and no one else knows the answer and can return the doomed soul from the brink. For some reason these illusions are nourished by healthcare workers. Sometimes it is because no one wants to admit failure, error, or impotence. Sometimes it is the weight of false expectations – the family plans to have the patient home by the next holiday, who will tell them that this miserable life in the hospital bed is as good as it is ever going to get now? Patients and families often respond to bad news with anger. This also discourages the flow of information. Many healthcare workers see it as beyond their duties to expose themselves to these kinds of reactions. It is much easier just to give the pills, change the bandages and say “he sure is looking better today!”

As for me, I see the suffering it all causes and derive great satisfaction from dispelling these illusions. It is best when the patient and families are open and ready to hear. When they immediately recognize and appreciate that I am being straight with them. I know that most others will not be and this enlivens me and helps me to extend myself further. It is harder when there is resistance. Often the patient wants to die, but the family will not allow care to be withdrawn or limited (this is not assisted suicide). Often the patients are beyond being able to participate in their care, and there is disagreement among family members about which course to take. In these cases there is always a risk of becoming a target of family member anger. It is natural, after all, to look for someone to blame, especially when there are often so many mistakes, and no one ever steps forward to take responsibility. Still I will crush their illusions if I can, slowly and gently if I can. I am confident that I reduce my patient’s suffering in this way and that of their families as well. Medical feathers may be ruffled from time to time, but there has been no retaliation so far. Mostly there is appreciation from coworkers. I try to be careful also. I avoid exceeding my bounds. I am cautious not to expose myself uselessly. I am older and wiser than I used to be and I do have a family to support as well. Still, there is almost daily opportunity to fight against the black darkness of ignorance that enfolds this hellish modern society. There is more opportunity here in the ICU than anywhere else I have found. I love my job for this reason.

WW II

2008-05-04T09:13:00.000-07:00

She could not have known she was going to end up like this. If you had been able to tell her, you would not have wanted to. A CD player in the room was turned up and music from better times filled the room. Instrumentals from songs like “Happy Days Are Here Again” in a carnival style evoked euphoria of the celebrations after World War II. Was she a young woman then? Or maybe she had just been attracted to the fresh memory of these times in her youth. The leathery, weather worn skin on her face seemed to tell of a life fully lived, but without the cruel and bitter lines that come from overindulgence and selfishness that is sometimes seen with this type. “My young days were the best in my life and I hold on to their memory in bad times,” she seems to say through this music which fills the room. But it is all so surreal. She has just returned from abdominal surgery. Her belly lies on her frame like a puddle, its open incision covered with a brown plastic vacuum dressing. Her nurse, Dan, with his 15 years of experience, dances to her music as he urgently hangs unit after unit of blood, plasma and platelets. He has asked me to bring some supplies and I have stayed for a minute in case he needs something more. I may also learn something. I am intrigued by his dancing. I do not quite understand. Is it because the shift is almost over and he is thinking about his plans for the weekend? Is he dancing to celebrate the patient’s life? Or is it that he is resisting the misery of this place and this work by outright rebellion against it? Finishing a few steps, he turns towards me, “Take it away Leo!” he orders, friendly. I hold up the pillow I have brought for him and make it bounce to the beat a few times. “You sure are a tough one, Leo. Nothing breaks you up.” He says happily.

“She will be dead by morning.” I think to myself. One gets to know the look of a person who is never going to leave the ICU. She is pale and almost yellow. Her head is tilted back slightly and her mouth opens in an O shape. All the sedation and narcotics are not taking away the look of pure agony on her face although she is beyond seeing, beyond touch. Is she beyond sound also? No way to know.

She has not died by the next day, or by the one after that. Her family comes on some days for an hour or so. I avoid eye contact, so they will not be troubled by my thoughts. “Stop doing this to her you bastards!” is what I would like to say. But then I only know this final chapter. I do not know the rest and should not judge. Perhaps if she was my patient I could talk to them. Perhaps they do not understand what they are seeing. Perhaps they are not aware that they are the only ones who are in a position to do anything about it.

That day does not come. Her music plays for three days and is then stopped, never to be restarted. She lasts for three weeks or so, the look of agony on her frozen absent face increasing day by day. Do I need to say it? She died after that.

Code Blue

2008-04-28T04:12:00.000-07:00

On the other end of the surgical ICU, around the corner from where my patients are, Mrs. Jones is dying. I do not know about her illness, but over the past few days I have heard talk on the unit. The doctors have encouraged the family to withdraw care, but they have declined. Nurses often feel that doctors are far too hesitant to give families the bleak assessments they need to hear to prepare them for the end. Patients languish for months slowly declining while the doctors continue to throw out threads of hope for the families to cling to. One after another these threads inevitably break. Complications lead to more complications. One infection is resolved and another takes its place. When death is immanent and all that can be salvaged is the illusion of control is the time when the doctors usually encourage the family to accept the inevitable. The nurses have often known for months how the story is going to end, but they have to keep quiet. We bear the burden of maintaining the weeds false hopes that have been planted by television, watered by doctors and fertilized by incomplete information. Families visit wanting only to hear good news and we try to oblige. Inside we suppress strong urges to tell them to wake up and smell the coffee. If we could speak freely we would tell them that they are only making their loved ones suffer. All they are giving their mothers and fathers, their spouses and children is a miserable, painful death. But it is not our place to speak like this, and besides you never can tell which one out of a thousand will be an exception. Even the exceptions, though, hardly ever make it home.
So when the families are not listening to the doctors and are pushing ahead with hopeless care, as is the case with Mrs. Jones, the nurses really start to get agitated and people start to talk. In the break room I hear the fellow being asked about end of life care. She relates a story of a young man from a tight-knit Latin American family who was brain-dead. The family had brought him from another hospital for a second opinion, but the news was still the same. They begged for an experimental treatment. “Can’t you shock his brain back to life?” they had asked. The man was already dead, but the hospital maintained his body for several more days to give time for the family to digest the situation. They declined organ donation. The fellow felt at peace with her role in this and indicated that Mrs. Jones was a similar case. We were maintaining her to give the family time to adjust. She was not brain dead, but was probably still beyond much of the suffering. And there are always narcotics for pain.
In the afternoon the respiratory therapist sits at the computer next to me charting and looking up labs. “Look at this one.” she says to me, “Nothing I can do about this.” An arterial blood PH of 7.01 tells the story of rupturing cells, failing kidneys, clogged lungs and certain death. The heart will not continue to beat in such an acid environment. Normal PH is 7.35-7.45. Anything below 7.20 is critical. The charge nurse, Betty, has come to ask us for updates on our patients and Mrs. Jones’ nurse, Rachael, seeks her out to talk with her away from the family. Rachael is one of the more experience nurses on the SICU and has been given this sensitive assignment out of faith in her good judgment and sensitive bedside manner. She only has one patient today. With a sly, mischievous smile, Rachael asks the Betty quietly, “Do I bathe her?” Betty is taken by surprise and draws a quick breath. Her face shows love for Rachel and exasperation. This would be the infamous ‘death bath’ where the patient’s condition is so tenuous that she will not survive the turning of her body that is required for changing her sheets. “Well, how bad is she?” asks Betty. Rachel replies that the bed is totally soaked. Without making a decision, they begin to talk about the code we are all dreading. Another nurse joins the conversation, “With her belly open like that, her guts are going to spill out on the bed when we do chest compressions.” “What about medical futility?” I say – physicians are not required to offer treatments when they have no expectation of any positive effect. Betty replies that there would probably be a lawsuit if we did not code Mrs. Jones. “But that is not the real reason. The family needs to see it. They need to feel that everything possible was done.”
On this day one of my patients has moved out of the SICU to a step-down unit. The patient is moved in their own bed and the clean bed from the room they have gone to is brought back to the SICU and kept in the hall until the previous room has been cleaned. My room is clean now, but I chose the wrong spot to leave the bed and my bed has gone missing. With the excuse of going to get the number for Bed Supply I walk around the corner to have a look at Mrs. Jones and her family. I am almost there when I hear the warning alarms go off. I am next to one of the central monitors and with a quick glance I see Mrs. Jones’ heart beating its last. I rush back and shout around the corner, “Its time!” Rachel and Betty are already on their way. We head to the room which is by now full of busy nurses and doctors. Rachel dives in and takes up position at the head of the bed. She knows the IV lines and will push the drugs. Betty stands at the back of room, near the doctor to coordinate. The respiratory therapist is at the head of the bed. She has taken the patient off the breathing machine and is ventilating her with an ambu bag. One nurse rushes to hang IV fluids on pressure bags as Rachel dials up the meds that are already running on the IV pumps, increasing the doses. Another nurse mans the code cart, pulling out meds and handing them to Rachel to be pushed. I notice that no one has started the code documentation, so I grab the manila envelope and start. I record the meds that go in, the CPR, the fluid, the respiratory information and the heart rhythms. Nurses, techs and doctors take turns at chest compressions. The saying is that if you are not cracking ribs, your compressions are not effective. Mrs. Jones’ guts do not spill out of the 2 foot long, one foot wide incision in her belly. The surgical attending physician is in the habit of reinforcing the dressings with an OR towel and this pays off again. The brown cellophane suction bandage stays in place on Mrs. Jones’ huge swollen abdomen. Her large breast stands straight up and by its color it appears to be full of blood. The suction tube from Mrs. Jones’ stomach is full of dark red blood; her body is so full of fluid that her skin is taught all over her body and drops of yellow fluid ooze out of every pore. We continue the hopeless drama, but everyone is sincere. It is more than an exercise. We are not just drilling. The family huddles at the back of the hall and we are showing our hearts. We are doing everything we can. Meds are given every two minutes; Epinephrine, Bicarb, Atropine, Calcium, Vasopressin, over and over. We call out to each other so that we all know what has been done. “Anything else we can try? Should we give Magnesium, doctor?” “Alright, one amp of Magnesium.” Comes the reply. The defibrillator is in place, but there is no rhythm. There is nothing to shock. This is not TV and we all know there is no point in shocking asystole. We will not do it for the gratification of the family. Every few minutes we pause to check for a rhythm. After fifteen minutes, long after severe permanent brain damage is certain, we see, to our dismay, something on the monitor. How much longer will we have to put poor Mrs. Jones through all this? “Is that sinus brady?” someone calls out. “Is there a pulse?” I call out. There is no pulse, no blood pressure. I mark down PEA (pulse less electrical activity). After another minute the fellow calls the code. A young man, whose mind appears younger than his body by his affect rushes in from the hallway. “Don’t leave me Mommy! Don’t leave me!” In the hallway the other relatives begin to weep. Someone yells, “Get a gown on him!” Mrs. Jones has an antibiotic resistant bacterium we are trying to stop from spreading. The son, overwhelmed in his grief, still pauses submissively as we tie the gown on him. You can see he has appreciated our efforts. As usual, no one bothers about getting gloves on him which is really more important than the gown. We tie up loose ends and disperse.

A family’s fresh grief moves everyone in spite of the inevitability of it all. A more jaded nurse mutters “Jesus Christ!” trying to shrug it off. We all feel like being quiet. Some people pair off to talk about their feelings and how it all went down. Tomorrow it will be something else.

First Death

2008-04-27T14:19:00.000-07:00

Prior to working as a nurse I had never seen anyone die. I had not even seen a dead human body. When I started my orientation in the Medicine Intensive Care Unit (MICU) I was not uncomfortable with the idea of witnessing death. Instead, I was interested and curious. I had a sense that this was an area where I would find engagement for my strengths. In spite of my first experience, this has been borne out. Death is something so hidden in our society that patients and families often have little experience with it. For this reason they do not know what to expect when the time comes. They are also often unaware that the dying process is taking place. It is often seen that mourning begins when the monitors are turned off. The family may be at the patient’s side, they may have watched as breathing has stopped and seen the heart monitor go to a flat line, but when the nurse reaches up and turns off the monitor, they begin to cry and wail. This is the act that makes the situation real.
While caring for dying patients and their families I try to make sure that everyone knows what is happening. I try to answer whatever questions they may have and to keep them in touch with their doctors and other members of the care team they may want to speak with. As the patients are often unable to communicate with their families at this time, the family members usually desire to speak about concerns about what the patient would have wanted. Finding themselves in the uncomfortable role of making decisions for the patient’s end of life care, they urgently want to know what will make their loved one most comfortable.
Once I listened to a attending physician on rounds discussing end of life care with new interns. He emphasized that, once a patient has made it out of the emergency department, in greater than 95% of cases death occurs when care is withdrawn. This is a very significant fact. In our culture of TV fantasy we see that patients and families are rarely prepared to accept death as an inevitable outcome. We are so accustomed to seeing make-believe last minute heroic saves that hope for recovery often remains intact long after it has become appropriate to focus on preparing for the end. As a result, patients often receive much more intervention than is warranted. It is not unusual for patients to be maintained in medicated comas and provided with uncomfortable surgical interventions. The goal of these interventions may be simply to extend life for a few more days or hours. When this takes place, it is often because patients and especially families are not ready to let go. It is therefore particularly striking that such a great proportion of patients die when care is withdrawn. Almost all of the time patients die when families finally come to the conclusion that continued interference with the natural process of death is simply causing their loved one unnecessary pain.
As a nurse I find few things more painful and exasperating than watching patients go through unnecessary suffering at the very end of their lives. I therefore find some satisfaction in assisting in the process of coming to terms with the inevitable and thereby helping to release patient and family from hopeless and miserable situations.

A few weeks into my orientation on the MICU my preceptor selected a patient whose family was likely to withdraw care that day as our patient for the shift. This would be an important part of my orientation as the death rate for patients admitted to the MICU was around 33 percent. Caring for dying patients would certainly be part of my daily job and I would need to learn what to do and how to manage myself.
Our patient, Mr. Greene, was a man in his fifties who had worked in a fiberglass factory. His lungs had been scarred to the point where he could no longer breathe adequately on his own. Mr. Greene had been on mechanical ventilation for more than a month. When awake, Mr. Greene became agitated. He would fight against the ventilator and the restraints which kept him from pulling the breathing tube out. His agitation also drove his blood pressure dangerously high. To correct and control this, he was receiving, among other medications, high doses of morphine to make him more comfortable. While this was effective in controlling his blood pressure, he was almost never awake. His lung capacity continued to diminish and higher and higher ventilator settings were required. The time was fast approaching when it would no longer be possible to increase his ventilator settings further.
Being as new as I was, I did not question whether the use of morphine to control blood pressure was appropriate. It is even possible that I had not properly understood his medication regimen. In any case, on this day Mr. Greene’s blood pressure did not start to increase and he did not show signs of being in pain, so I did not administer the optional doses of morphine that he had been receiving for so long. This, together with a change in ventilator settings allowed Mr. Greene to awaken for the first time in several weeks.
He awoke to find perhaps fifteen members of his extended family surrounding his bed praising Jesus and praying for him. They had just had a family meeting with the physicians and had agreed to withdraw ventilator support on that day. Many of Mr. Greene’s extended family had not visited him for sometime and so they were not particularly surprised to find him awake. They happily took the opportunity to talk with him and say their goodbyes. He also appeared happy for their presence. He did not understand the decision they had made and, perhaps out of discomfort, they did not spell it out for him. Observing him I realized that after a several months of being tied down and unconscious he no longer had any use of his arms. Even his fingers did not move at all. I untied and removed his wrist restraints. He did not need them any more.
Outside of the room I told the doctor that Mr. Greene was awake. I was not sure if this would have an impact on the plan to withdraw care or not. “No way.” Said the doctor, but after coming out of Mr. Greene’s room he confirmed, to his surprise, what I had seen. The plans to withdraw care were not reevaluated.
Following instructions, I prepared a morphine drip and a 10 milligram bolus of morphine. Since Mr. Greene had been receiving so much morphine, higher than normal doses would be needed to keep him comfortable. My preceptor asked if I wanted to stay in the room for the process and I said that I did. Most of the family had left now. Only Mr. Greene’s mother and sister and another male relative remained. As my preceptor and I entered the room, the male relative decided he did not want to stay any longer and he left. I hooked up the morphine drip to the patients IV and hooked the syringe with the 10 mg bolus to the IV line. My preceptor got close to his face and explained to him, “Mr. Greene, we are going to give you some medicine now to make you comfortable and then we are going to take you off of the ventilator okay?” Mr. Green began thrashing his head back and forth. It was not okay with him. My preceptor took a few steps back. I waited for someone to say, “stop.” No one said anything. I continued to wait. Mr. Greene looked at his sister with pleading eyes and continued to shake his head. She did not engage his glance. Mr. Greene’s mother spoke up, “have you given him the medicine yet?” she asked. My preceptor looked at me with growing agitation and gestured to me that I should give the bolus. It did not seem right to me, but I deferred to my preceptor and gave the dose. It had almost no effect. I stepped away from the bed, not willing to do anything more. My preceptor quickly moved to the IV pump and began rapidly increasing the dose. The vigor gradually faded from Mr. Greene’s protests. By this time the respiratory therapist had arrived and the ventilator was removed. Mr. Greene’s eyes quickly became still and glazed over. He died quickly over the next ten minutes or so. I watched as his breathing slowed and became ineffective gasps with longer and longer pauses. His heart slowed to 60 beats a minute, then fifty, then it stopped. I reached up to turn off the monitor and the family began to weep. I seemed alone in my discomfort about how things had gone.
As I drove home that night I began to feel as if I had become an executioner. “This is not what I signed up for.” I told myself. I told my wife what had happened. It did not sound good to her. I called an older acquaintance who was a hospice nurse and told her the story. “That was totally unethical” she said, “but I am not surprised. It probably happens like that all the time in ICU’s.” (It does not). My friend encouraged me to talk to my supervisor and perhaps to contact the hospital’s ethics review board. I did so. Shortly thereafter I heard my preceptor complaining from the nurse manager’s office. “Its too late now. If he felt uncomfortable, he should have said so at the time. It is done now there is no point in talking about it.” I do not think she ever forgave me and the rest of my orientation went on with some tension. At one point I heard her tell another nurse that she could not wait to get me off of orientation. Apparently she was of the breed that embraces the philosophy of ‘never look back.’ As a highly reflective person this kind of thinking is very foreign to me. I want to know about the mistakes I have made so I can avoid repeating them.
It was particularly important for me to explore this event. Why did I acquiesce? Had I allowed myself to be intimidated? Had my curiosity and eagerness to have a new experience dampened my will to resist? What could I have done differently? The dose I had administered was not the decisive one, but I still saw that I had initiated the process. It would have been within my power to change the progression of events. What should I have done? I asked my nurse manager. No clear answer came. I was told not to do anything that made me feel uncomfortable. A nurse from the palliative care team who was also a member of the hospital’s ethics review panel came to speak with me. She also expressed the same sentiment as my nurse friend that this was probably a common affair in the MICU. At our first meeting she expressed an interest in taking the case before the review panel. A couple of days later things had changed. My preceptor had not backed my version of events. By her recollection Mr. Greene had been in a coma for more than a month. I was a new nurse and had obviously misinterpreted whatever it was I saw. There was furthermore no documentation in the chart to support my version. I had not evaluated Mr. Greene’s level of consciousness. I had not written anything about him waking up in my note on the chart. The doctor had not written anything either. No one, including myself, felt it would be a good idea to disturb the family by asking for their version.
That was pretty much the end of it all. To my preceptor’s annoyance I continued to ask other nurses what they thought. “Don’t do anything you are uncomfortable with,” was the standard answer, which I did not find particularly satisfying. After a couple of weeks my preceptor spoke with me privately. “Listen,” she said, “If we had done something the family might have taken back their decision to withdraw care. Half an hour later Mr. Greene would have been back in a coma again and he would have stayed that way for weeks until he died.” This satisfied me somewhat. I did not agree completely, but at least it made some sense. I resolved to act differently in the future. If I had it all to do again, I would have slowed things down. I would have encouraged the family to talk with him. I would have talked with him more myself. I would have tried to explain his condition to him. I would have waited that half an hour until he was back in his coma. I would have tried to save that last half hour for him.

Beyond Healing

2008-04-27T14:14:00.000-07:00

It is mid morning and I am starting to get annoyed with the resident. He is speaking with the family of my patient. By my estimation, she does not have long to live. Instead of giving them clear answers to their questions, the resident is uncomfortable and evasive. He appears to be of the type that does not like to say that there is nothing more that can be done and death is inevitable. The family, in spite of this, seems fairly clear on the situation. They have already stipulated that there should be no further surgical interventions and are seeking information so that they can make decisions on how to manage her end of life care. The doctor keeps saying things like, “without being able to intervene surgically we do not have any way to try to change the progression of the disease process.” These statements are making me angry. I have seen her wound and know that there are no surgical solutions here. Enough has been tried already. I am feeling that it is actually very inappropriate that this doctor is trying to escape from his own discomfort by placing a burden of guilt on the family.
The patient’s husband, daughter, son-in-law, and 9 year old grandson are present. The daughter and husband are talking with the doctor while the others visit. The daughter is leading the conversation and I can tell right away that she is a nurse. She is not put off or intimidated by the doctor’s evasiveness and continues to repeat her questions over and over with different phrasing to try to corner him into giving up what he knows. She is trying to get a sense of how much time her mother has, how bad the wound is and what the different options for interventions and withdrawal of care will mean. The doctor continues to place things on the family, “We will manage her care however you decide,” he says, “If you want us to stop her care we will do that, and if you want us to continue treating her with the goal of getting her to a skilled care facility we will do that.” The daughter asks pointedly, “Do you think she is going to get better and be able to go to a skilled care facility? It has not sounded like that.” I lose patience and jump into the conversation for the first time, “It is not that she will actually make it to a nursing home, we would just manage her care with that as a goal.” “Yes, that’s it,” says the resident appearing relieved that I have found the right words to say. The daughter gathers my meaning and also appears to appreciate the clarification. I do not say anything more, but I stay nearby and wait for the conversation to wind down.
As soon as the doctor has left I turn to the daughter and say, “Are you a nurse?” She replies that she is. “Do you want to see the wound?” I ask. “Yes I do.” She replies without hesitation, “When will you change her dressing?” I explain that I have already changed the dressing for the shift, but that it is a very simple dressing and I feel it is important for her to see the wound. She agrees and we move into the room to the bedside. The patient lies in bed very much aware, but unable to speak due to being on a breathing machine which is attached to a surgically inserted tracheal airway in the middle of her neck. “The nurse is going to let us look at your wound Mom, is that okay?” says the daughter. The patient gives her consent. I gesture to the patient’s husband and son-in-law and say, “maybe they should not see it.” “No, we want to see it. We both want to see it.” comes the immediate answer. The grandson, however, is told to sit on a chair by the sink, still inside the room but on the other side of the curtain. He protests initially but quickly acquiesces.
Now it is time to see the wound. I call the daughter to my side of the bed and leave the men on the other side. I pull the patients gown down to her abdomen, exposing her chest. She has had open heart surgery a month or so prevously and the incision has become infected. A line of sutures begins from the top of her sternum and continues down to a gauze pad in the middle of her chest. At first glance it does not appear to be a mortal wound. I remove the gauze pad to expose an open area about five inches long and three inches wide which is packed with more gauze. Once this gauze is removed the entire wound is exposed. The daughter leans in to examine it. Where the sternum once was there is now a window into the patient’s chest. It is like looking into a running washing machine as fatty tissues and membranes pulse from the rapid beating of the patient’s heart and slosh up and down with her breathing. A foul odor comes up from the wound. The daughter looks at the sutures that are still intact. Beneath the skin, the tissue is brown and dry. Points of light can be seen coming through between the sutures in several places. “There is no healthy tissue there at all.” She says “the whole thing is going to open up.” From behind the curtain the grandson, overcome by curiosity, speaks up, “Is it bad Mom?” he says. “Be quiet Jeremy!” his father snaps. “I just want to know if it’s bad. Is it bad Mom?” he protests. “Jeremy, be quiet.” She says. The patient’s husband and son-in-law now come around the bed to see the wound better. They are transfixed by the wound and have forgotten the patient. I look at her. Her eyes are darting back and forth and her head moving from side to side as if she has been captured by an unseen force and is looking for some way to escape. “Are you okay?” I ask. She looks at me and mouths “I’m scared.” “Yes it is scary.” I say in a reassuring way. She becomes a little calm. I cannot tell her that everything will be alright, or that she will get better soon. I can try to connect with her, try to understand her and give her a voice. Seeing my concern she is a little soothed and becomes calmer.
I begin to feel that it may have been a mistake to show the family the wound. They continue to gawk and remain inattentive to her distress. I tell the daughter I am going to redress the wound. She helps me by getting the others away and slowly their attention shifts back to the patient. At first they seem unsure what to say, but gradually they begin talking. They turn to me and thank me for showing them. Over the next few hours they thank me numerous times for the clarity that this has brought them and I feel more at ease with my decision.
After some time the grandson leaves with his father and the patient’s husband and daughter speak with each other. They invite me to be present. Having talked with his wife the husband tells the daughter that the patient is not ready to die and that she has told him that he should pray for her. He tells us that he tried to explain to her that he was not going to be able to change her situation in this way, but that she was insistent. They begin to discuss options for her care. The daughter, being a nurse, does not want to make her mother suffer by unnecessarily prolonging her death. The husband is unsure, “she is not ready to die yet.” He says. The daughter counters him, “No one is ever ready to die Dad, but nature takes its course. Nature is taking its course here and we do not want to make her suffer for nothing.” The daughter asks me for a mirror. She wants to show her mother the wound. “I do not think she would want to see it.” I say thinking of her high level of anxiety. “But I think she needs to,” the daughter replies. I look, but there are no suitable mirrors on the unit, so the point is moot. “She asked me for a couple more days and I have to give that to her if I can,” says the husband. They are both satisfied with this plan and turn to me to ask how I expect things to go. I explain to them about IV blood pressure drips called pressors which are used to counter the drops in blood pressure which often occur as a consequence of systemic infection. I explain that, in the patient’s current condition, without pressors her blood pressure could at any time drop below life sustaining levels and she could die within a few hours from this. With aggressive use of pressors, she could possibly live for months, slowly becoming more and more ill. In the end they decide to continue to use pressors for the time being with a plan to reevaluate after a couple of days. They decline other kinds of interventions such as use of chest compressions and shocks. I work with the doctors to formalize and document their wishes.
Later in the day the patient’s daughter leaves and her husband stays. The patient falls into a deep sleep and her blood pressure drops below life sustaining levels. If nothing is done perhaps she will die in a few hours. I look at her husband and see that he is unaware of the situation. I quietly go to the IV pump and turn on the Norepinephrine which is still in place from the previous night. The husband does not enquire as to what I am doing and it feels unnecessary to mention anything. As I go to leave the room I pause for a moment near the husband and he begins to speak. I squat next to him to hear more clearly. He tells me that he had watched his mother die a similar death and that this is even more difficult. Then he says that he has studied many of the world’s religions and philosophies, “and none of it helps. The one thing that does help though is knowledge.” He thanks me again for showing them the wound. Then begins to speak about his daughter and how fortunate it is to have her assistance. “I feel sorry for people who do not have a daughter who is a nurse,” he says. She knows what questions to ask and how to ask them. She is able to help them all to understand what is happening and what it means. He tells me that she works in a neonatal intensive care unit. She has told him stories of how she has on occasion spent nights weeping for dying infants to which she had become attached and of the trauma she experiences in breaking bad news to families. I feel honored by his sharing. I feel I have gotten things right this time and I am satisfied within myself. We talk a few more minutes and then I leave the room. The rest of the shift is uneventful. I do not know what happened to them after I left.

One more piece of information

2008-04-27T14:12:00.000-07:00

One day I paused to listen to a doctor as he spoke with the family of a dying patient. Looking at the monitor I could see the telltale wide QRS waves of a dying heart. The patient would be dead within an hour or two. The doctor explained that there was nothing more that could be done and that we were keeping the patient as comfortable as possible. After the doctor left the patient’s nurse invited the family back into the patient’s room. The patient was on isolation precautions and this would entail putting on isolation gowns again. The family declined. The nurse registered slight disapproval that the family did not want to be with the patient in her last moments and then moved on. After she left I approached the family and asked them if they understood what the doctor had told them. They said they thought they did. I said, “So you realize it is happening right now and she only has an hour or two at the most?” The husband drew a quick breath. They had not realized. They became activated and decided what to do. The rest of the relatives, including the patient’s young daughter, were brought to the room to say goodbyes. After a few minutes some of the visitors left, taking with them the young daughter, who did not understand what was happening and kept telling them that everything was going to be okay. I returned to my own patients. That patient died shortly thereafter.

Quadriplegia

2008-04-27T14:09:00.000-07:00

What do you call a quadriplegic lying on the floor? Matt. What do you call a quadriplegic in the water? Bob. What do you call a quadriplegic leaning against the wall? Ilene. And if she is Chinese? Irene. I learned these jokes somewhere around the fourth grade. I often wonder now how anyone could find them funny. There is nothing humorous about being a “Quad”
Hear the story of Mr. Tucker. Tall and obviously once handsome in a rough way, Mr. Tucker’s face shows signs of toughness with perhaps a softer side underneath. I never heard about the circumstances surrounding his gunshot wound. That had happened ten years before I first took care of him and the story had been lost, along with the other remnants of his previous life, in his endless wandering through hospitals and long-term care facilities. Now his life is spent entirely in bed. When awake, his head nods up and down in concert with his breathing. When you get his attention, he can look at you for just an instant. He cannot respond to his name or any questions. Tears frequently run down his face. Sometimes he appears to laugh at jokes the nurses tell to each other while in his room. Perhaps he has thoughts. Perhaps he is aware of his surroundings, but it is impossible to know for sure. His right arm is folded up on his chest. If you pull it down and out about a foot, which is as far as it will go, he can pull it back up to his chest. That is the full extent of his ability to move his body. He lies in the bed, his trach forever hooked to a ventilator, a feeding pump pumping tube feeds directly into his stomach day and night. He has a large ulcer on his sacrum and smaller wounds elsewhere on his body. His belly is round like a beach ball and lies unnaturally on his middle aged frame. He comes regularly to the ICU to be treated for infections and pneumonias. Blood pressure drips, antibiotics and fluids hang on his IV pole. Who is looking after him? Why do they keep him like this? “Someone somewhere must be getting a check,” says the tech cynically. One instantly feels condemned for thinking in this way, even if there is sometimes truth in it. Is it Mr. Tucker’s mother who comes to visit him? She does not talk to anyone and sits quietly for an hour or so. When she thinks no one is listening she may say a few words to him. Who will say to her that she is keeping him alive only to suffer? It will not be me. I would not dream of it. Who then will speak for him? What would he really want?
Mr. Tucker’s care is simple. He needs to have his lungs suctioned frequently because of thick mucous buildup in his lungs, he needs to have his IV medicines administered and he needs to be bathed and to have his wound dressings changed once a shift. Wound care on this type of patient is generally done towards the end of the shift as a courtesy to the oncoming staff. If the wound care has been done early, the next shift will also be obliged to do it at the beginning of their shift. Doing it later allows the next nurse to take care of it at her convenience. The tech and I flip Mr. Tucker on to his stomach and I begin to take down his dressing. Mucous pours out of his mouth and his oxygen levels drop. He is getting sicker. I suction him again and turn the oxygen up to 100% on the ventilator. I pull out the old, foul smelling, yellow and greenish tinged gauze, apply an enzyme to dead tissue in the wound, wet a fresh piece of gauze with saline solution, wring it out and then tuck it into the wound going into the pockets between skin and flesh. An absorbent pad is placed on top and taped down. We change the sheets and bring him again to lie on his back. I suction again and wait for his oxygen levels to stabilize before turning the ventilator settings back to where they were. The tech is gone now. I look at Mr. Tucker. He looks so miserable. I say to him truthfully, “I do not think it will be much longer Mr. Tucker.” Tears stream down his face. His nodding becomes a little more pronounced. Does he hear me? Does he understand what I am telling him? I pause a moment more. I will never know the answer.

At the age of 19 John came from his home in the northwest to visit his father. He had gone one night to a party. He had had a lot to drink and could not remember the night’s events. The next day he began to feel tingling in his hands and feet. When he awoke the next day he could not move. He told his father when he came to get him up, but his father thought he was faking and went to work. He returned to find his son as he had left him and decided he would take him to the hospital – the next morning. By then it was too late to administer the anti-inflammatory medications that would, most likely, have prevented any permanent injury. John had now become known as “the new quad in room 8.” His mother had come to be with him. He could not speak as he was now dependent on a ventilator for breathing, but she could read his gestures and his lips and gave him a voice that he otherwise would not have had. His father also came frequently. He tried not to show the weight of the burden of guilt he would now carry. John’s mother did not fight with him or show any anger towards him. She made plans to bring him home. She would have to get the front porch redone to make it wheelchair accessible. She struggled with insurance companies to get them to pay for the flight he needed back to their state. She struggled to find a skilled care facility near her home that would take him in the interim. John became angry with her when she left the room.
John must have fallen badly. Someone who had been at the party must have known what had happened, but no one was talking. A man a little younger than John’s father came to visit him. He went in the room to speak with him, but John just glared at him, I wondered to myself if John thought this man knew what had happened. He came out of the room a little shaken and turned to me. “He looks like he’s really angry with me. I don’t know what’s going on,” he said. I replied that it was pretty hard for a person to be in the situation John was in. The man contemplated my words for a moment, “He’s totally fucked!” he said. Taken aback, I did not say anything more. The visitor seemed satisfied that he had done what he could and left shortly thereafter.
John stayed in our unit for a month or two before the flight was finally arranged. During that time it was arranged that his girlfriend would come to see him. As her arrival approached everyone focused on the progress he had made. John’s father shaved his face so he would look his best for her. He seemed happy at the thought of seeing her. Shortly before her entrance he became sullen. Some things are impossible. In honor of her visit John left his room for the first time since his injury. It was John in the bed being pushed down the hallway by his nurse and a tech. His girlfriend walked next to him holding his hand. His mother walked on the other side of the bed. The, respiratory therapist pushed the ventilator. Alas, what can be said about such a sight?

Nightshift

2008-04-27T14:00:00.000-07:00

Leo Levy
Nightshift

On my first nightshift I was placed under the care of a young male nurse named Justin. Justin was quiet and mellow. He told me he liked night shifts because they give you more of a chance to get to know everything about your patients. As I was very new, Justin kindly gave me simple tasks to perform. Being emphatically not a night person, I struggled to stay awake more and more as the night progressed. Around midnight another nurse, Jessica, came to Justin to ask for help with bathing her patient – the largest on the unit weighing around 450 pounds. Justin turned to me, “Wanna help lift pannus?” he said. I nodded affirmatively. Having absolutely no idea what he was talking about I followed him into the patient’s room. There lay Mr. Ray – a large puddle of flesh in an even larger bed. Mr. Ray’s belly rolled down to his knees and sloshed out wider than his shoulders like a giant water balloon. Mr. Ray’s privacy password, something like ‘meathead,’ seemed to give some insight into his character, as did the fact that his only communication with the world around him was to raise his eyebrows in the affirmative when asked if he wanted pain medication. While Jessica used a wet cloth to wipe down his legs, Justin stationed me on one side of the bed and made his way around to the other side. There he opened up a flat sheet and began tucking one end into the skin folds between Mr. Ray’s thighs and belly. Pulling the middle portion around and under Mr. Ray’s belly fold, Justin handed me the other end and gestured that I should do as he had done. Still not comprehending, I complied. Once my task was completed, Justin grabbed his end of the sheet tightly and braced himself and indicated I should do the same. “Okay,” he said, “Heave ho.” I suddenly remembered the meaning of the word ‘pannus’ as we shifted Mr. Ray’s hanging belly fold, his pannus, up towards his chest. Jessica, a young woman, now leaned in, cursing at the foul odor, to bathe his genitals and perineal area. She did a thorough job. Afterwards we rolled Mr. Ray onto his side to change the dressing on his sacral ulcer. Being stationed on Mr. Ray’s front side I was not able to see the wound. I watched as Justin let out a breath and turned to his head away to avoid becoming nauseous, A new odor, more foul than the first, filled the room. As Jessica cleansed and then packed the wound with roll after roll of moistened gauze, she expressed frustration. “I do not know what we are supposed to do about this,” she said, “There is no way we can keep him off of it.”