Phenomenology Online

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What is it Like for Nurses to Experience the Death of their Patients?

 

Camargo, Pilar

 

It is 6:50 pm. I am about to begin another shift. As I wash my hands, I look into my room 311. The patient, a man, is in his 50s or 60s.  He does not look well.  His face is pale. Sweaty. I glance at the monitor. Blood pressure is very low; heart rate is normal. The patient is surrounded by 10 IV pumps. A doctor once said, “Pilar, the imminent death of a patient is easy to identify. Just look at how many pumps the patient is hooked up to.”   7:00 pm. I am ready to start my shift. I enter room 311. “Who is he?” I ask the afternoon nurse. “It’s Mr. Ricardo. Do you know him? … How unpredictable life is,” she continues.  “This morning he got up as usual. But suddenly he had the worst stomachache.  He came to E.R. They operated. Now he is beyond help.  We cannot do anything for him. He is dying. He has a medical order not to resuscitate.” As the nurse talks to me, I look at the patient. His hair is grey; his face pale, but with a touch of peace. He seems to be sleeping. I ask my co-worker, “What about the family? Do they understand the situation? Where are they?” “The doctors have spoken with them. His wife was very upset.  But she knows what to expect. They may be at home now. She left a phone number, just in case.”

 

I find myself thinking about my own family. I can imagine how difficult this situation must for his family. I take his hand. It is cold and sweaty. I speak to him. I introduce myself. But I don’t know if he can hear me. In my grandmother’s dying hours, when I spoke to her, she opened her eyes.   She looked for my voice.  That was amazing. We were not really close. But I felt that she recognized me.  That she was thanking me for being there at that moment. I watch the monitor. Blood pressure and heart rate are unchanged. Perhaps he is waiting for something or someone. I am called to the phone. It is his wife. I feel uncomfortable. I do not know what to say. She asks about her husband, “Is he OK?” I repeat the information I was given. Then I tell her, “If you want to come here and stay with him, I can authorize your entry to the hospital.” I hang up and quickly scan my surroundings. All is the same in the ICU.  As usual there are the annoying sounds: monitors and ventilators; nurses, therapists, and doctors all in their own world.  No one is concerned but me that this man is dying. I walk to the window and look out. Bogota is cold tonight. It is raining and silent. My thought in this moment is simple: life marches on. It does not care who is in its way, who falls and gets trampled. Yet, here in 311 it is a different night. Intense. Bright. And strangely silent. Mr. Ricardo’s heart is fighting for his life. The heart rate continues at 70.

 

A woman appears. His wife. We walk out of the room.  She hesitates, “I know you are his nurse.… I just want to ask you how he is. Is he suffering? Is tonight the night?” I look at her. There is sadness in her eyes.  She too is suffering. I feel the cold of the night. The seconds pass like hours. I hear myself say, “Mr. Ricardo’s condition is poor, as Dr. Perez told you today. Yes, maybe tonight is his night.  Do you want to stay with him?” She nods, “Yes.”  We return to the room.  She looks at him, and touches him. Then she turns to me and asks, “Can he hear me? Is he in pain?” “At present he does not have any pain. It may help to talk to him.” She continues rubbing his hand. She kisses his forehead and looks at the monitor. His blood pressure reads 40/23.  His heart rate has begun to decrease.  She looks up to me: “I do not want to be here when he dies. Please take care of him.”  She turns and leaves the room.

 

Now I am here, with him. Alone with him. I come near to him. In this most intimate moment of his life. I touch him and watch his face. I feel sorrow and some kind of serenity. As I look at him, I hear my mother’s words, “When a person is dying, his face becomes more delicate, more definite.” I now recognize death.  I glance at the monitor. Blood pressure is 0/0. Heart rate 45, 42, 30, 25 …. 8:30 pm. He is not suffering any longer…

8:30 pm. My patient is dead.  Monitor and IV pumps are stopped one by one. Then the ventilator is turned off, too. I inform Dr. Perez about Mr. Ricardo’s death. Now he is officially dead. Room 311 is closed.  His wife waits for news in the hallway. I call her. She looks at me and understands that he is gone. I just say, “I am sorry.” She walks into room 311. And both wife and husband spend one more moment together.

 

After a while she is ready to let us clean and shroud his body. For this process I take from the bedside table gloves, gauze, blade and transparent film dressing. My hands start a routine: cut stitches when it is necessary, take off, clean and cover each tube, nasogastric drain, catheter, other drains and arterial line. These elements are now unnecessary and are pulled out of him. During the process, some parts of his body begin to turn cold to the touch. Very cold. Then I look at him. He seems as if he is dwelling in a pleasant dream. Mr. Ricardo’s body is relaxed and it seems as if all his worries were left behind. He is shrouded now.  Mr. Ricardo is ready for the last encounter with all of his family. Wife, daughter, son, sisters and brother enter room 311. Everybody cries around him, but no one touches him. I have stepped out of room 311. I watch them.

 

After a while his family knows that it is time to let him go from ICU. His wife turns to me,  takes my hand, and says, “Thank you.” For a moment I am in silence, then I say, “You’re welcome.” At that moment I watch as his body leaves the ICU. Before returning to my other patients I take a last scan of room 311. It is now empty and messy.  My thought at this moment is simple, “He spent just one hour and half of his life with me, but in that brief time he taught me about life and myself as a nurse. Death is never routine. We were engaged in the last meaningful moment of his life. Now, I ask myself, ”what meaning does his death hold for me, his ICU nurse?”

 

Nursing on my hands

6:50 pm. I am about to begin another shift. As I wash my hands, I look into my room 311.

I am preparing for another shift. I begin my work with the simple procedure of washing my hands. It seems that when I wash my hands that action lets me enter another world  –the world of ICU. In nursing, hand washing is one of the most important procedures in preparing to care for patients. What is the difference between washing my hands at home and washing my hands in ICU? At home I wash my hands after going to the bathroom or after having done some work in the yard. My mother used to tell me, “Pilar, wash your hands before your lunch if you do not want to get sick,” and in time that custom became part of me. I usually wash my hands when I come home. The routine is simple: I just rinse my hands, spread some soap on them and rinse again, really nothing special about it.

 

But in nursing, my hands are an important part of my work. Washing my hands at home does not change my identity.  However, it seems that when I wash my hands in ICU I participate in a transforming procedure. Completing the meticulous process takes me ten minutes in ICU. And it is more than time.  It seems that hand washing prepares me as a nurse for new encounters with my patients, because after a while these hands are ready to care for them.  As water falls onto my skin and my knowledge of nursing emerges and molds my identity. While I am doing this activity, I look into one of my assigned rooms: room 311 is a part of my work. But room 311 is also recognized as my own: “I look into my room 311.” That ownership is just for one night and it is not a property ownership. Rather it is a relational quality. This is now my room and my patient, for whom I carry responsibility.

 

Although room 311 becomes part of my expected encounter with someone else, as a preparation to share life or death, it seems like the uniqueness of the moment appears only when nursing action goes beyond that of a simple duty. As nurses we know what our duty is, what we may expect on our shift and how our patients can go from life to death quickly, especially in ICU where life and death are separated by a narrow line. But we never know where and when an unexpected encounter with death will occur. At this moment my reality is just that my hands are clean and I am ready to care for that person who is lying in my room: my patient. I am ready to have a new encounter, a new experience as a nurse.

 

Seeing the patient

The patient is a man in his 50s or 60s.  He does not look well.  His face is pale. Sweaty. I glance at the monitor. Blood pressure is very low; heart rate is normal. The patient is surrounded by 10 IV pumps. A doctor once said, “Pilar, the imminent death of a patient is easy to identify. Just look at how many pumps the patient is hooked up to.”

Once, when I was ten, I visited my grandmother at the hospital. That was my first time as a visitor in a hospital. I wanted to see her. She suffered a heart attack and I was worried about her situation. Before our arrival at the hospital my mother explained what to expect about my grandmother’s health and room. My mom described everything there as pumps, sounds, IV lines, and nurses. When we arrived at her room I saw grandma lying in a bed different from her own bed. She laughed and spoke normally. I did not see pumps, IV lines or even nurses. I just saw her, speaking and laughing as always. As a visitor at that time I could not perceive my grandmother as a sick person. She was there but I did not understand why. Later, when we left, I asked my mom, “Why is my grandmother here?”

 

Many hospital visitors have to confront the same situation of seeing a relative in ICU. For visitors that situation is unusual and stressful. But they may only really see the person as a person, and they may only be vaguely aware of the pumps, sounds or monitors. It seems like we look for the uniqueness of the Other. It is the mere act of seeing as Max van Manen says: “how and what we see depends on who and how we are in the world” (p. 23).  Now that I am a nurse, my way to see my patients is different. I see my patients looking for me to understand them as persons with needs and necessities.  As a nurse, I am trained to see particular signs that something is wrong with them.

 

Even the two words, “pale and sweaty,” express my sense that something is wrong. My eyes quickly scan room 311, and both monitor and room confirm my suspicions that something is really “wrong.” Of course, in ICU “wrong” means for me as nurse that the patient is critical. In nursing we perceive not only to distinguish one person from another, but also to “sense” how everything is with our patients. And it is difficult to say when we gain that sense that is characteristic of nursing. It just tells me that something is not right with my patient.

 

A pale and sweaty face appears in front of me. Natural sounds for me in ICU such as ventilators, monitors, and alarms produce different reactions in ICU. Although I do not know what is wrong, I feel I am in the presence of death. Why? How do I recognize that my patient is dying? I do not know but previous experiences with death in ICU return vividly to my mind. It seems like all my experience and knowledge in ICU returns over and over to confront me with new experiences.

 

Seeing others when I am off duty is different. Although my sense of nursing is there, I do not see people on streets, in parks or schools, as if I were looking for something wrong. I see people only as passers-by or as people I meet. I see expressions and gestures of the others. I see the individuality of that person, something that distinguishes that woman or that man from others.

 

Who is he? Or what is he? The meaning of recognition in nursing

7:00 pm. I am ready to start my shift. I enter room 311. “Who is he?” I ask the afternoon nurse. “It’s Mr. Ricardo. Do you know him? … How unpredictable life is,” she says.  “This morning he got up as usual. But suddenly he had the worst stomachache.  He came to E.R. They operated. Now he is beyond help.  We cannot do anything for him. He is dying. He has a medical order not to resuscitate.”

Who is he? Something that distinguishes that person from another one, it is a simple question which makes it possible to attach a name to the face of the other. In nursing the question “Who is he?” sometimes is answered as if it were asking “What is he?”  Certainly the latter question is important since it details the medical condition and the progress of the patient. However, when my co-worker answers the question, “Who is he?” she responds with a name as well as a complete description of his health problem. In nursing that question includes identification and description of the situation of the person. It is not a question that is answered with just a name. In nursing we look for who the patient is, what the patient is, and why the patient is here. Those questions are sometimes impersonal but at the same time they show proper descriptions of my patients.

 

Mr. Ricardo has a story. He is here in ICU because something unfortunate happened to him. Now he is more than who he was; he is now what happened to him with regards to his illness. He has a story that makes his situation unique. Every word of his story becomes part of our story now.  “To receive recognition literally means to be known” (p. 38) because that person becomes an individual who requires the concentration of all my attention, knowledge and efforts.  As van Manen says, “The more I care for this person, the more I worry, and the more I worry, the stronger my desire to care” (p. 272). Whether I am interested or not, the “who is he” question creates the opportunity to share with someone else. The recognition of the other implies that we are part of the other, share in the other’s world.

As the nurse talks to me, I look at the patient. His hair is grey; his face pale, but with a touch of peace. He seems to be sleeping.

I know that this man who is lying in this bed has his own story.  My meeting him is a new encounter. His entire story is new for me. My responsibility is revealed: that person requires my attention. This is the ethical experience of the “otherness” of the other, as van Manen describes. And he has my interest in him.  In the end, all our efforts are reduced to the fact of nursing that person. Now the patient of room 311 becomes Mr. Ricardo. He is at this moment a face with a name and story. As Emmanuel Levinas (1969) points out:

The Other remains infinitely transcendent, infinitely foreign; his face in which his epiphany is produced and which appeals to me breaks with the world that can be common to us, whose virtualities are inscribed in our nature and develop by our existence. (p. 515)

Mr. Ricardo’s face is now more familiar to me. I know his name and recognize that he is a unique person. He is not 311’s patient anymore. His face that just minutes ago was foreign to me becomes familiar and we are ready to share our common world. He becomes familiar for me now that I know his story, know what is behind that face and why he is here with me. Getting to know an unconscious or comatose patient is very different from a patient who is awake.  An awake patient’s face gives me other significant messages: that person may show me pain, sorrow, or happiness. It is very different from my patient who is unconscious.

 

Now I look at my patient’s face and a relationship is established between him and me. It is different from other relations because in nursing it is not important whether the patient is intubated or unconscious. His face speaks to me and tells me that he is there with me. How is it possible to do that when my patient is in a coma? We only have to exchange our position with him. It is like taking his position but not in a real way; it just assumes his situation and understands him. It is a relationship of recognition. Although he cannot share his feelings or thoughts, the peace in his face shows me another face of death. As Levinas points out, “The face speaks to me and thereby invites me to a relation incommensurate with a power exercised, be it enjoyment or knowledge” (p. 518).  That comatose status gives to him a certain kind of peace. It is like all of our issues; thoughts and suffering are left behind us. I recognize that Mr. Ricardo’s face is teaching me about how unique the moment of his death is.

 

Being next to him: The meaning of approach in nursing

“What about the family? Do they understand the situation? Where are they?” I find myself thinking about my own family. I cannot imagine how difficult this situation is for his family.

Who has not experienced some kind of identification with another’s problems? For a moment this person is not just someone who is lying in this bed with a medical order not to resuscitate–he could be my father.  In this instant, his situation makes me think of my own family. How would I deal with that? My perception of his situation makes me feel empathy for his family. I try to approach and to understand the other’s situation.Death links two people into one experience: his family and my family are the objects of my reflection now.  It is as if I share with his family this moment as mine. Although it is not mine, I understand it. As van Manen states: “In the encounter with the other, in this greeting, in this face, we experience and understand the purely ethical before we have involved ourselves in ethics as a form of thinking and reasoning” (p. 273). How is it possible to be touched by a situation that is not intimate or personal? As a nurse I have to be with him. Being next to him means that I recognize his situation, that it is similar to what I may have experienced in the past. As a human being I know what it is to miss or lose someone.

I take his hand. It is cold and sweaty. I speak to him. I introduce myself. But I don’t know if he can hear me. In my grandmother’s dying hours, when I spoke to her, she opened her eyes. She looked for my voice. That was amazing. We were not really close. But I felt that she recognized me. That she was thanking me for being there at that moment.

Approaching someone who is dying is different when it is on a personal as compared to a professional level. And yet, there are similarilties as well. On a personal level, my moment with my grandmother was surrounded by sorrow and hopelessness. In my grandmother’s last moments, even though I wanted to comfort her, I could not.  I just could speak with her.

 

But my words were quite different from the comfort words that I give to the patient. I only said to my grandmother, “Hi.” And I was astonished that I could not believe that she was dying. The moment of her death was perceived by me in a different way. I was afraid. It seems like when the word death is present in my personal life, the nurse’s knowledge is left behind. My grandmother’s death shows me how difficult it is for me as a human being to assume the death of one of my relatives.

 

But here the moment is different. I just want to take care of him. That approach in some way brings the opportunity to create bonds. How is it possible that from an unexpected relationship bonds grow? Certainly those bonds are not common, and they are different from those that emerge between relatives or friends, because both nurse and patient set up their relationship from mutual unknowns. My approach springs from the simple idea to give him comfort and to let him know that I am his partner in this last moment. My moment as nurse is not surrounded by sorrow. It is a moment of company and respect for the other’s situation. A moment of recognition in which I touch him and speak to him.  As Carol Olson (1993) says, “Care is the being of being there” (p. 145).  That is my responsibility as nurse. I cannot change his situation but I can share that moment with him. The reality is tangible. His sweaty, cold hand shows me a reality. He is dying. But I do not feel afraid or powerless. I feel that I can be with him. I am his nurse, and I can talk with him. In those moments, approaching includes a feeling of unity as a human being.

 

Is he OK? Talking about death in nursing

I am called to the phone. It is his wife. I feel most uncomfortable. I do not know what to say. She asks about her husband, “Is he OK?”

I repeat the information I was given. Then I tell her, “If you want to come here and stay with him I can authorize your entry to the hospital.”

The word “death” forces us to recognize our own mortality.  Speaking about death seems to break our daily life routine, making it impossible to go forward because we do not consider death as part of life. For me, as a nurse, the word death in ICU acquires a different meaning. Even though death is a common occurrence in ICU, at the same time it is uncommon because each experience is unique and we do not learn how to deal with each one better. There is not a set way to have a conversation about death. It seems like an impossibility to share our experiences; also, it creates an impossibility to talk about death with relatives of the patient. When I receive the call from Mr. Ricardo’s wife, I feel anguish

We are afraid of the fear, we anguish over the anguish, and we tremble. We tremble in that strange repetition that ties an irrefutable past (a shock has been felt, a traumatism has already affected us) to a future that cannot be anticipated; anticipated but unpredictable. (Derrida, 1995, p. 54).

My sense of control is lost; I know what the consequence of Mr. Ricardo’s illness is but in some sense I cannot accept it. For that reason my conversation with her is limited to just repeating the Doctor’s prognosis. Certainly I want to speak more with her. But the words do not flow because the moment of recognition of death is strange and unique. Death shows us our vulnerability and our own end. How can I think of death when I am alive? Death means the end of the world as I know it, the closing of the window of life. The world we know disappears in front of us. We spend all of our life focusing on how to live. But it seems that we rarely think about how to die.

I look at her. There is sadness in her eyes.  She too is suffering. I feel the cold of the night. The seconds pass like hours. I hear myself say, “Mr. Ricardo’s condition is poor, as Dr. Perez told you today. Yes, maybe tonight is his night.  Do you want to stay with him?”  She says, “Yes.”  We return to the room.

In ICU the conversation with family is limited to brief personal encounters or telephone calls. But here, more than with a telephone call, the presence of the wife makes it almost impossible to talk about death. The words do not flow. And she is waiting for my answers and more than that, she wants an opportunity to resolve her doubts about her husband’s condition. Why? What is she expecting?

 

Once a patient said to his daughter: “Do you know, honey, what you will do, if something happens to me tonight?  You know what to say to everybody?”  In that moment the daughter was astonished at his words.  She was not prepared for that sort of conversation.  She avoided his eyes.  She tried to change the topic. As human beings we leave, and we may miss those precious last moments with the person who is trying to say good bye.  We do not know what happens after death. Yet, death is one of the things in our life that we cannot control. To recognize the face of death in someone else is to recognize our own mortality. We think that we are prepared for everything.  But life changes the rules of the game all the time.  Now we are here.  The next minute we do not know what has happened to us.

 

Loneliness of the experience of death

I watch the monitor. Blood pressure and heart rate are unchanged. Perhaps he is waiting for something or someone.

I look at the monitor and after observing that the heart rate and blood pressure do not change, my thought is focused on the idea that Mr. Ricardo is waiting for something or someone. It is strange that the most important instances of life are lived in complete aloneness: one of those is our birth and the other moment is our death. Even though in birth and death people may be surrounded by family and friends, the specific moment is not shared because nobody can share the moment of his or her first breath or the moment of his or her last breath. It seems that our own humanity is resistant to being social in those moments of life and death. It is as if we do not want to share our most intimate moments. As Derrida (1995) points out:

I can die for the other in a situation where my death gives him a little longer to live, I can save someone by throwing myself in the water or fire in order to temporally snatch him from the jaws of death, I can give her my heart in the literal or figurative sense in order to assure her of a certain longevity. But I cannot die in her place. I cannot give her my life in exchange for her death. (p. 43)

I can share my life, my dreams, my grief and all the things that join me with another person, but at the moment of death the word “share” is left behind. We cannot delegate our death, for this moment just arrives. Where and when it arrives is impossible to know.

 

Unable to share death, human beings share their lives. As a nurse, I just can be with Mr. Ricardo. I can share those last moments with him. I can rub his skin, control his vital signs, but I cannot die with him. I cannot feel what he is feeling now in those last moments. I am just a watcher. Although I am with him, at the same time, he is alone. As a nurse, I can cross death, but my experience is different from his experience. I could feel some kind of the same feeling when someday I die.  But certainly his death teaches me about myself as a nurse.

I hang up and quickly scan my surroundings. All is the same in the ICU.  As usual there are the annoying sounds: monitors and ventilators; nurses, therapists, and doctors all in their own world.  No one is concerned but me that this man is dying.

 

I walk to the window and look out. Bogota is cold tonight. It is raining and silent. My thought in this moment is simple: life marches on. It does not care who is in its way, who falls and gets trampled. Yet, here in 311 it is a different night. Intense. Bright. And strangely silent. Mr. Ricardo’s heart is fighting for his life. The heart rate continues at 70.

This is a moment of aloneness. I am alone with my thoughts and although he is with me, Mr. Ricardo is alone with his death. Around us, everybody is busy in other activities. No one seemes to realize that something of grave consequence is happening in room 311: a life is lost.

 

It seems like the color of the death is reflected in the place where I am.  Death comes closer. My room is silent and bright. But nevertheless death becomes significant and different.  I look at my surroundings and only find a contrast between the darkness of outside with the brightness and intensity of the room. Both inside and outside have in common the indifference to this man’s death.

 

Life goes on.  As his nurse, I think how difficult it is to be fully aware of the moment of death of someone else. Although his body is barely responding, his heart continues beating for his life. In the end, humanity creates a fine bond between hopefulness and hopelessness, and the body responds to it.

 

The meaning of the last moment

She kisses his forehead and looks at the monitor. His blood pressure reads 40/23.  His heart rate has begun to decrease.  She looks up to me: “I do not want to be here when he dies. Please take care of him.”  She turns and leaves the room.

Now I am here, with him. Alone with him. I come near to him. In this most intimate moment of his life. I touch him and watch his face. I feel sorrow and some kind of serenity. As I look at him I hear my mother’s words, “When a person is dying his face becomes more delicate more definite.” I now recognize death.  I glance at the monitor.  Blood pressure is 0/0. Heart rate 45, 42, 30, 25 …

While Mr. Ricardo’s wife is there with him, all his vital signs have begun to decrease. As Derrida (1995) says: “the Other has no reason to give us and nothing to settle in our favor, no reason to share his reason with us” (p. 56).  Derrida describes death as beyond reason: reasons do not exist, for it just happens in front of my eyes and I cannot stop it. Overwhelmed by the situation of her husband, his wife leaves the room. She says to me, “Please take care of him,” and I am with him alone in his last moment of life. Once again I look at him and touch him and a feeling of sadness overcomes me in those gestures–because he is dying, and I am with him and yet he is alone.  Despite my past experience in ICU as a nurse, this moment is different and unique.  Every death is always different and unique. As Derrida points out: “I am still afraid of what already makes me afraid, of what I can neither see nor foresee” (1995, p. 54).  It is difficult to face something that I really do not know, something that I can see with my eyes, but is beyond my own humanity.

 

My patient’s face begins to turn delicate and definite—and I recall my mother’s words about death… Is the uniqueness of the moment of death revealed when we say “good bye?” What is it about the moment of letting go of my patient?

 

What death precisely is, is very difficult to describe when we limit ourselves to considering the word death as a general theme. Death is unique. Its voice is ready to speak to us. But certainly we tend to be deaf and blind to its call. Death is always changing its face, and the experience in that final moment becomes utterly unique. In ICU the meaning of death is there when we look into the face of a dying patient. And we become aware of our own mortality.  For nurses, this is a hard reality, part of our existence and part of our professional and personal life.

 

 

References

Derrida, J. (1995). The gift of death. David Wills (translator). Chicago: The University of Chicago Press.

Levinas, E. (1969). The Primacy of the Other. In Moran, D. & Mooney, T.(eds.) The phenomenology reader. New York: Routledge Taylor & Francis.

Olson, C. T. (1993). The life of illness. One woman’s journey. Albany, New York: State University of New York Press.

van Manen, M. (2003). The tone of teaching. London, Ontario: Althouse Press.

van Manen, M. (2002). Care-as-Worry, or “Don’t Worry, Be Happy”. Qualitative Health Research, 12 (2), 264-280.