Tie Me Up, Tie Me Down

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?

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

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

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.

To be continued.