Prior to working as a nurse I had never seen anyone die. I had not even seen a dead human body. When I started my orientation in the Medicine Intensive Care Unit (MICU) I was not uncomfortable with the idea of witnessing death. Instead, I was interested and curious. I had a sense that this was an area where I would find engagement for my strengths. In spite of my first experience, this has been borne out. Death is something so hidden in our society that patients and families often have little experience with it. For this reason they do not know what to expect when the time comes. They are also often unaware that the dying process is taking place. It is often seen that mourning begins when the monitors are turned off. The family may be at the patient’s side, they may have watched as breathing has stopped and seen the heart monitor go to a flat line, but when the nurse reaches up and turns off the monitor, they begin to cry and wail. This is the act that makes the situation real.
While caring for dying patients and their families I try to make sure that everyone knows what is happening. I try to answer whatever questions they may have and to keep them in touch with their doctors and other members of the care team they may want to speak with. As the patients are often unable to communicate with their families at this time, the family members usually desire to speak about concerns about what the patient would have wanted. Finding themselves in the uncomfortable role of making decisions for the patient’s end of life care, they urgently want to know what will make their loved one most comfortable.
Once I listened to a attending physician on rounds discussing end of life care with new interns. He emphasized that, once a patient has made it out of the emergency department, in greater than 95% of cases death occurs when care is withdrawn. This is a very significant fact. In our culture of TV fantasy we see that patients and families are rarely prepared to accept death as an inevitable outcome. We are so accustomed to seeing make-believe last minute heroic saves that hope for recovery often remains intact long after it has become appropriate to focus on preparing for the end. As a result, patients often receive much more intervention than is warranted. It is not unusual for patients to be maintained in medicated comas and provided with uncomfortable surgical interventions. The goal of these interventions may be simply to extend life for a few more days or hours. When this takes place, it is often because patients and especially families are not ready to let go. It is therefore particularly striking that such a great proportion of patients die when care is withdrawn. Almost all of the time patients die when families finally come to the conclusion that continued interference with the natural process of death is simply causing their loved one unnecessary pain.
As a nurse I find few things more painful and exasperating than watching patients go through unnecessary suffering at the very end of their lives. I therefore find some satisfaction in assisting in the process of coming to terms with the inevitable and thereby helping to release patient and family from hopeless and miserable situations.
A few weeks into my orientation on the MICU my preceptor selected a patient whose family was likely to withdraw care that day as our patient for the shift. This would be an important part of my orientation as the death rate for patients admitted to the MICU was around 33 percent. Caring for dying patients would certainly be part of my daily job and I would need to learn what to do and how to manage myself.
Our patient, Mr. Greene, was a man in his fifties who had worked in a fiberglass factory. His lungs had been scarred to the point where he could no longer breathe adequately on his own. Mr. Greene had been on mechanical ventilation for more than a month. When awake, Mr. Greene became agitated. He would fight against the ventilator and the restraints which kept him from pulling the breathing tube out. His agitation also drove his blood pressure dangerously high. To correct and control this, he was receiving, among other medications, high doses of morphine to make him more comfortable. While this was effective in controlling his blood pressure, he was almost never awake. His lung capacity continued to diminish and higher and higher ventilator settings were required. The time was fast approaching when it would no longer be possible to increase his ventilator settings further.
Being as new as I was, I did not question whether the use of morphine to control blood pressure was appropriate. It is even possible that I had not properly understood his medication regimen. In any case, on this day Mr. Greene’s blood pressure did not start to increase and he did not show signs of being in pain, so I did not administer the optional doses of morphine that he had been receiving for so long. This, together with a change in ventilator settings allowed Mr. Greene to awaken for the first time in several weeks.
He awoke to find perhaps fifteen members of his extended family surrounding his bed praising Jesus and praying for him. They had just had a family meeting with the physicians and had agreed to withdraw ventilator support on that day. Many of Mr. Greene’s extended family had not visited him for sometime and so they were not particularly surprised to find him awake. They happily took the opportunity to talk with him and say their goodbyes. He also appeared happy for their presence. He did not understand the decision they had made and, perhaps out of discomfort, they did not spell it out for him. Observing him I realized that after a several months of being tied down and unconscious he no longer had any use of his arms. Even his fingers did not move at all. I untied and removed his wrist restraints. He did not need them any more.
Outside of the room I told the doctor that Mr. Greene was awake. I was not sure if this would have an impact on the plan to withdraw care or not. “No way.” Said the doctor, but after coming out of Mr. Greene’s room he confirmed, to his surprise, what I had seen. The plans to withdraw care were not reevaluated.
Following instructions, I prepared a morphine drip and a 10 milligram bolus of morphine. Since Mr. Greene had been receiving so much morphine, higher than normal doses would be needed to keep him comfortable. My preceptor asked if I wanted to stay in the room for the process and I said that I did. Most of the family had left now. Only Mr. Greene’s mother and sister and another male relative remained. As my preceptor and I entered the room, the male relative decided he did not want to stay any longer and he left. I hooked up the morphine drip to the patients IV and hooked the syringe with the 10 mg bolus to the IV line. My preceptor got close to his face and explained to him, “Mr. Greene, we are going to give you some medicine now to make you comfortable and then we are going to take you off of the ventilator okay?” Mr. Green began thrashing his head back and forth. It was not okay with him. My preceptor took a few steps back. I waited for someone to say, “stop.” No one said anything. I continued to wait. Mr. Greene looked at his sister with pleading eyes and continued to shake his head. She did not engage his glance. Mr. Greene’s mother spoke up, “have you given him the medicine yet?” she asked. My preceptor looked at me with growing agitation and gestured to me that I should give the bolus. It did not seem right to me, but I deferred to my preceptor and gave the dose. It had almost no effect. I stepped away from the bed, not willing to do anything more. My preceptor quickly moved to the IV pump and began rapidly increasing the dose. The vigor gradually faded from Mr. Greene’s protests. By this time the respiratory therapist had arrived and the ventilator was removed. Mr. Greene’s eyes quickly became still and glazed over. He died quickly over the next ten minutes or so. I watched as his breathing slowed and became ineffective gasps with longer and longer pauses. His heart slowed to 60 beats a minute, then fifty, then it stopped. I reached up to turn off the monitor and the family began to weep. I seemed alone in my discomfort about how things had gone.
As I drove home that night I began to feel as if I had become an executioner. “This is not what I signed up for.” I told myself. I told my wife what had happened. It did not sound good to her. I called an older acquaintance who was a hospice nurse and told her the story. “That was totally unethical” she said, “but I am not surprised. It probably happens like that all the time in ICU’s.” (It does not). My friend encouraged me to talk to my supervisor and perhaps to contact the hospital’s ethics review board. I did so. Shortly thereafter I heard my preceptor complaining from the nurse manager’s office. “Its too late now. If he felt uncomfortable, he should have said so at the time. It is done now there is no point in talking about it.” I do not think she ever forgave me and the rest of my orientation went on with some tension. At one point I heard her tell another nurse that she could not wait to get me off of orientation. Apparently she was of the breed that embraces the philosophy of ‘never look back.’ As a highly reflective person this kind of thinking is very foreign to me. I want to know about the mistakes I have made so I can avoid repeating them.
It was particularly important for me to explore this event. Why did I acquiesce? Had I allowed myself to be intimidated? Had my curiosity and eagerness to have a new experience dampened my will to resist? What could I have done differently? The dose I had administered was not the decisive one, but I still saw that I had initiated the process. It would have been within my power to change the progression of events. What should I have done? I asked my nurse manager. No clear answer came. I was told not to do anything that made me feel uncomfortable. A nurse from the palliative care team who was also a member of the hospital’s ethics review panel came to speak with me. She also expressed the same sentiment as my nurse friend that this was probably a common affair in the MICU. At our first meeting she expressed an interest in taking the case before the review panel. A couple of days later things had changed. My preceptor had not backed my version of events. By her recollection Mr. Greene had been in a coma for more than a month. I was a new nurse and had obviously misinterpreted whatever it was I saw. There was furthermore no documentation in the chart to support my version. I had not evaluated Mr. Greene’s level of consciousness. I had not written anything about him waking up in my note on the chart. The doctor had not written anything either. No one, including myself, felt it would be a good idea to disturb the family by asking for their version.
That was pretty much the end of it all. To my preceptor’s annoyance I continued to ask other nurses what they thought. “Don’t do anything you are uncomfortable with,” was the standard answer, which I did not find particularly satisfying. After a couple of weeks my preceptor spoke with me privately. “Listen,” she said, “If we had done something the family might have taken back their decision to withdraw care. Half an hour later Mr. Greene would have been back in a coma again and he would have stayed that way for weeks until he died.” This satisfied me somewhat. I did not agree completely, but at least it made some sense. I resolved to act differently in the future. If I had it all to do again, I would have slowed things down. I would have encouraged the family to talk with him. I would have talked with him more myself. I would have tried to explain his condition to him. I would have waited that half an hour until he was back in his coma. I would have tried to save that last half hour for him.