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.”