Final post on Mrs. Hardy

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

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

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

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

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

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

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

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

A forty ounce bottle and a two-by-four

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

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

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

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

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

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

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

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

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

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

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

Anonymous

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

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

Mrs. Hardy cont.

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

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

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

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

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

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