Friday, October 14, 2011
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.”
Sunday, January 9, 2011
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.
Sunday, July 18, 2010
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.
Tuesday, December 1, 2009
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.
Thursday, September 17, 2009
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.
Saturday, September 12, 2009
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 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.
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 dying slowly.
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.
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? 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.
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 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.
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 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 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 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.
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 again, 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 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.
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 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.