This is a Dangeous Place

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

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

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

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

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

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

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

Mrs. Hardy update

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

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

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

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

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

Mrs. Hardy cont.

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

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

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

More On Mrs. Hardy

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

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

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

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

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


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

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

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

Let Me Go (Continued from previous post)

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

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

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

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

Let Me Go (continued from previous post)

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

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

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

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

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

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

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