It is mid morning and I am starting to get annoyed with the resident. He is speaking with the family of my patient. By my estimation, she does not have long to live. Instead of giving them clear answers to their questions, the resident is uncomfortable and evasive. He appears to be of the type that does not like to say that there is nothing more that can be done and death is inevitable. The family, in spite of this, seems fairly clear on the situation. They have already stipulated that there should be no further surgical interventions and are seeking information so that they can make decisions on how to manage her end of life care. The doctor keeps saying things like, “without being able to intervene surgically we do not have any way to try to change the progression of the disease process.” These statements are making me angry. I have seen her wound and know that there are no surgical solutions here. Enough has been tried already. I am feeling that it is actually very inappropriate that this doctor is trying to escape from his own discomfort by placing a burden of guilt on the family.
The patient’s husband, daughter, son-in-law, and 9 year old grandson are present. The daughter and husband are talking with the doctor while the others visit. The daughter is leading the conversation and I can tell right away that she is a nurse. She is not put off or intimidated by the doctor’s evasiveness and continues to repeat her questions over and over with different phrasing to try to corner him into giving up what he knows. She is trying to get a sense of how much time her mother has, how bad the wound is and what the different options for interventions and withdrawal of care will mean. The doctor continues to place things on the family, “We will manage her care however you decide,” he says, “If you want us to stop her care we will do that, and if you want us to continue treating her with the goal of getting her to a skilled care facility we will do that.” The daughter asks pointedly, “Do you think she is going to get better and be able to go to a skilled care facility? It has not sounded like that.” I lose patience and jump into the conversation for the first time, “It is not that she will actually make it to a nursing home, we would just manage her care with that as a goal.” “Yes, that’s it,” says the resident appearing relieved that I have found the right words to say. The daughter gathers my meaning and also appears to appreciate the clarification. I do not say anything more, but I stay nearby and wait for the conversation to wind down.
As soon as the doctor has left I turn to the daughter and say, “Are you a nurse?” She replies that she is. “Do you want to see the wound?” I ask. “Yes I do.” She replies without hesitation, “When will you change her dressing?” I explain that I have already changed the dressing for the shift, but that it is a very simple dressing and I feel it is important for her to see the wound. She agrees and we move into the room to the bedside. The patient lies in bed very much aware, but unable to speak due to being on a breathing machine which is attached to a surgically inserted tracheal airway in the middle of her neck. “The nurse is going to let us look at your wound Mom, is that okay?” says the daughter. The patient gives her consent. I gesture to the patient’s husband and son-in-law and say, “maybe they should not see it.” “No, we want to see it. We both want to see it.” comes the immediate answer. The grandson, however, is told to sit on a chair by the sink, still inside the room but on the other side of the curtain. He protests initially but quickly acquiesces.
Now it is time to see the wound. I call the daughter to my side of the bed and leave the men on the other side. I pull the patients gown down to her abdomen, exposing her chest. She has had open heart surgery a month or so prevously and the incision has become infected. A line of sutures begins from the top of her sternum and continues down to a gauze pad in the middle of her chest. At first glance it does not appear to be a mortal wound. I remove the gauze pad to expose an open area about five inches long and three inches wide which is packed with more gauze. Once this gauze is removed the entire wound is exposed. The daughter leans in to examine it. Where the sternum once was there is now a window into the patient’s chest. It is like looking into a running washing machine as fatty tissues and membranes pulse from the rapid beating of the patient’s heart and slosh up and down with her breathing. A foul odor comes up from the wound. The daughter looks at the sutures that are still intact. Beneath the skin, the tissue is brown and dry. Points of light can be seen coming through between the sutures in several places. “There is no healthy tissue there at all.” She says “the whole thing is going to open up.” From behind the curtain the grandson, overcome by curiosity, speaks up, “Is it bad Mom?” he says. “Be quiet Jeremy!” his father snaps. “I just want to know if it’s bad. Is it bad Mom?” he protests. “Jeremy, be quiet.” She says. The patient’s husband and son-in-law now come around the bed to see the wound better. They are transfixed by the wound and have forgotten the patient. I look at her. Her eyes are darting back and forth and her head moving from side to side as if she has been captured by an unseen force and is looking for some way to escape. “Are you okay?” I ask. She looks at me and mouths “I’m scared.” “Yes it is scary.” I say in a reassuring way. She becomes a little calm. I cannot tell her that everything will be alright, or that she will get better soon. I can try to connect with her, try to understand her and give her a voice. Seeing my concern she is a little soothed and becomes calmer.
I begin to feel that it may have been a mistake to show the family the wound. They continue to gawk and remain inattentive to her distress. I tell the daughter I am going to redress the wound. She helps me by getting the others away and slowly their attention shifts back to the patient. At first they seem unsure what to say, but gradually they begin talking. They turn to me and thank me for showing them. Over the next few hours they thank me numerous times for the clarity that this has brought them and I feel more at ease with my decision.
After some time the grandson leaves with his father and the patient’s husband and daughter speak with each other. They invite me to be present. Having talked with his wife the husband tells the daughter that the patient is not ready to die and that she has told him that he should pray for her. He tells us that he tried to explain to her that he was not going to be able to change her situation in this way, but that she was insistent. They begin to discuss options for her care. The daughter, being a nurse, does not want to make her mother suffer by unnecessarily prolonging her death. The husband is unsure, “she is not ready to die yet.” He says. The daughter counters him, “No one is ever ready to die Dad, but nature takes its course. Nature is taking its course here and we do not want to make her suffer for nothing.” The daughter asks me for a mirror. She wants to show her mother the wound. “I do not think she would want to see it.” I say thinking of her high level of anxiety. “But I think she needs to,” the daughter replies. I look, but there are no suitable mirrors on the unit, so the point is moot. “She asked me for a couple more days and I have to give that to her if I can,” says the husband. They are both satisfied with this plan and turn to me to ask how I expect things to go. I explain to them about IV blood pressure drips called pressors which are used to counter the drops in blood pressure which often occur as a consequence of systemic infection. I explain that, in the patient’s current condition, without pressors her blood pressure could at any time drop below life sustaining levels and she could die within a few hours from this. With aggressive use of pressors, she could possibly live for months, slowly becoming more and more ill. In the end they decide to continue to use pressors for the time being with a plan to reevaluate after a couple of days. They decline other kinds of interventions such as use of chest compressions and shocks. I work with the doctors to formalize and document their wishes.
Later in the day the patient’s daughter leaves and her husband stays. The patient falls into a deep sleep and her blood pressure drops below life sustaining levels. If nothing is done perhaps she will die in a few hours. I look at her husband and see that he is unaware of the situation. I quietly go to the IV pump and turn on the Norepinephrine which is still in place from the previous night. The husband does not enquire as to what I am doing and it feels unnecessary to mention anything. As I go to leave the room I pause for a moment near the husband and he begins to speak. I squat next to him to hear more clearly. He tells me that he had watched his mother die a similar death and that this is even more difficult. Then he says that he has studied many of the world’s religions and philosophies, “and none of it helps. The one thing that does help though is knowledge.” He thanks me again for showing them the wound. Then begins to speak about his daughter and how fortunate it is to have her assistance. “I feel sorry for people who do not have a daughter who is a nurse,” he says. She knows what questions to ask and how to ask them. She is able to help them all to understand what is happening and what it means. He tells me that she works in a neonatal intensive care unit. She has told him stories of how she has on occasion spent nights weeping for dying infants to which she had become attached and of the trauma she experiences in breaking bad news to families. I feel honored by his sharing. I feel I have gotten things right this time and I am satisfied within myself. We talk a few more minutes and then I leave the room. The rest of the shift is uneventful. I do not know what happened to them after I left.