Why “Caring Matters Most”

February 10, 2017

When Yale School of Nursing faculty member and philosopher Mark Lazenby, PhD, APRN, FAAN was asked to give a series of lectures on nursing and the good of society in the spring of 2013, his research into that intimidatingly broad subject led him to the very foundation of nursing itself…through the writing and work of YSN’s founding dean, Annie Goodrich.

Goodrich believed that ethics were at the very heart of the vocation of nursing, and that they serve as a compass guiding those who choose to follow toward making the world a better place. In his new book, Caring Matters Most: The Ethical Significance of Nursing, the first in a planned trilogy, Lazenby takes that bedrock principle and builds upon it.  He emphasizes that “Nursing is a profoundly radical profession that calls society to equality and justice, to trustworthiness, and to openness. The profession is, also, radically political: it imagines a world in which the conditions necessary for health are enjoyed by all people.”

There may be no better time than now to expand on and give voice to the “radical” idea of better health for all.

Below is an excerpt from the book:

Chapter 4  ~ Beauty

I will leave this earth with the memory of this event. It was horrible, so horrible, in fact, its repulsiveness is forever etched in my mind—indelibly etched, etched with the acid of injustice. Even now, I can conjure up the moment it happened, and even now, I feel its injury. I say the moment it happened, because it was one of those moments in which the event isolated itself, set itself off from everything else. It was the only event in my consciousness at the time. Everything else going on disappeared, even my awareness of being in my body. Darkness took over everything. It was so horrible.

I was abroad. Three graduate students were with me as research assistants. They were in their mid-twenties, all quite mature and dedicated to advanced practice nursing. We were standing in the middle of a hospital ward. We had been in this ward daily for almost a month collecting data on symptoms from patients. We knew that one of the patients on the ward was near death. We had seen her before. We knew her clinical situation. She was in quite a lot of pain; this she had told us, but her body told as much, too. She writhed in bed. We tried to get the physicians on the ward to give her pain medication. Fear of using opiates and lack of opiate supply conspired; her pain remained unmanaged for the month we had been on the ward.

As we stood there that morning, a crisp, bright morning, the sun’s rays entered the ward’s windows and danced on the bare cement floor. We had arrived early so we could start collecting data just after the physicians finished rounding. The ward buzzed; it was crowded with patients in beds and with patients who were not hospitalized but who were waiting to see the physicians after they finished rounding. That morning the ward buzzed, and it rocked with this patient’s moans. We stood there, the four of us, in the middle of the ward, waiting to collect data from patients. We remarked to each other that this woman’s moans were different this morning, this bright morning, this morning full of the buzzing business of the ward.

As her moans grew into shrieks, I looked in her direction. A family member stood by her side. Two nurses attended her. They were washing her limbs and brow with cool cloths, the pain management techniques they had available to them. Her shrieks turned to screams, screams the sort of which I had never known before. We know the death rattle; its sound is familiar to us. It is the sound of secretions piling up in the throat and upper chest, which dying patients cannot clear. I knew the death rattle. But I had not known the death scream, not until I heard it that morning. My students heard it, too. We heard this woman scream the death scream, and in the very middle of that scream, she died. She announced her death with that scream, and then she died. The scream, loud and desperate, shook everything—our bones, our minds, our hearts.

It was sad, gut-wrenching, depressing, unfathomable. It was all that. But more than all that, it was violent, repulsive, unjust. Its injustice disturbed me, disturbed me as far down as I could be disturbed. It was one of the most horrible events I have ever experienced—a woman dying screaming into her death.   

“Beauty,” Augustine said, is “a plank amid the waves of the sea.” The sea waves that morning on the ward—dark and cold and rogue—overtook this woman; and in the moment, they overtook us. As soon as we came to our senses, my students and I stepped outside into the hospital’s garden. The sun was warm and strong. We stood by a tree; it had the most beautiful red blossoms on it. Bougainvillea with purple flowers climbed up trellises on the hospital’s walls; they, too, were beautiful. We saw the beauty of these flowers, of their colors and shapes, and we felt the sun hitting our backs, taking the edge off the coldness that had settled into our bones. Beauty was the saving plank amid the waves of the stormy sea that morning.

Daily we nurses sail on stormy seas, and daily we need the saving plank of beauty. The hospital’s gardens were beautiful, exotically beautiful—nature’s beauty. “Beauty,” the essayist Elaine Scarry says, “is lifesaving.” But the beauty that preserved me amid that dark and choppy sea that morning was not the beauty of the gardens or the warm sun. What saved me that morning was the beauty of nursing. The nurses themselves, and their nursing acts aimed at alleviating the dying woman’s pain, were beauty, beauty amid the injuries of pain.

Injury, not ugliness, is the opposite of beauty. In fact, the base of the word “injury,” Scarry points out, is jur, which means right, right in the sense of justice. An injury is an event that is not right. An injury is an injustice. To die a death that is not peaceful is an injustice; it is not right. The nurses who attended the dying woman, in their healing acts of addressing her pain with the only tools they had, addressed the pain that injured the dying woman’s humanity.

It is in this sense that injury is wrong—morally wrong: injury threatens life. There are public health injuries that threaten life—lead-laced water the public have been told is safe to drink, the Earth that is warming up to degrees unsustainable for life, inadequate resources to address diseases and pain and suffering equally around the world. And there are personal injuries that threaten life. Nursing practice, in its unique function, addresses these injuries. Nursing practice, by addressing these injuries, seeks to beget beauty, and beauty is lifesaving.

Beauty is lifesaving to patients through the work of nurses. Nurses, Annie Goodrich says, should have a “love of beauty,” for beauty motivates nurses to restore and promote health and to lead patients to serene deaths. But for this to be the case, nurses need to develop the habit of seeing their patients as beautiful. It is not so much that our patients are beautiful in the sense of a supermodel or someone whose physical presence matches that of Michelangelo’s David. We often see patients in their injured state. Even if they look like a Gisele or an Adonis, they come to us injured or potentially injured. Our choice as nurses is to imagine the beauty of their lives.

Let me illustrate with an example from my own practice. I assumed the care of a patient in an oncology clinic because the nurse practitioner who had been caring for him went out on leave. The patient had prostate cancer, but it was not clear if the cancer had spread or if the cancer was contained in the prostate. The patient, a man about a decade older than me, struggled with anxiety. It debilitated him at times, leaving him alone in his home shut off from daily life. Even to come to the hospital to see me, he would have to take anti-anxiety medication. Unemployed, he always came to appointments with his partner, a woman of about his age who worked but whose job did not bring in much money. She was loving and attentive: she took notes on everything I said during the appointments and repeated them back to me to make sure she understood my instructions. They both wanted his prostate cancer treated. But there was an obstacle that was getting in the way.

The oncologist wanted my patient to have to a colonoscopy to screen for colon cancer before he would make a decision about how to treat the tumor in the patient’s prostate. This is common. We need as much information as possible when making treatment decisions about cancer care. But going under the sedation necessary for a colonoscopy frightened my patient. He had been refusing this colonoscopy for several months before I become involved in his care. Although no one called him “a problem patient,” some clinicians who had worked with him hinted that he was. And I admit, a few times I found myself impatient with him, he was so full of anxiety. One day, he and his partner came to the clinic to see me. It was a winter day and the heat was on a bit too high in the clinic room. One of them had been smoking cigarettes, though my patient said he did not smoke, but the room reeked when I entered it. The overpowering smell, the heat, and my frustration at my patient’s refusal to have a colonoscopy—yet again—got the best of me. I started to feel physically ill. In the middle of that visit, I thought I had come to my end. I did not think I could care for my patient anymore.

The choice I had in that moment was how I viewed my patient. I knew it would be two weeks before I saw him again, so I had two weeks to start imagining a future for him. I started telling myself a story about him in my head. I knew a bit about his life; I had, after all, taken his social history. I knew where he was born and raised, how much education he had had, and what he used to do for work. I knew that anxiety debilitated him, and I knew that his mother, who had died of cancer, was also “an anxious sort.” His father had passed away, too; this I knew. I knew enough to start imagining my patient as other than a “prostate cancer patient” in my clinic room. I started imagining him as having lived a life before my life with him. I also started imagining him as having a life with a future, a future of getting a colonoscopy and of getting the right treatment for the prostate tumor. And I imagined a future for him in which he did not come again to the cancer clinic, a future in which he did not need to come because the cancer had been controlled. I hoped for a future for him free from disease.

This is our choice as nurses—the choice to view our patients as having lives outside the context in which we see them. It is an ethical choice. It is the choice to view our patients as if disease and disorder do not rule their lives, even though they may be afflicted with disease and beset by disorder. It is the choice of viewing our patients as having beautiful lives. Life, after all, is beautiful.

Stories—our patients’ stories, how we interact with our patients’ stories, and the stories we tell ourselves about patients, as I did with my anxious oncology patient—have the power to transform how we view our patients.

I recently went to the Neue Gallery in New York City with my wife. She wanted to see Gutav Klimt’s portrait of Adele Bloch-Bauer. I didn’t care to see it. I am not a big fan of Klimt’s work; it doesn’t resonate with me. But my wife wanted to see it. About a month before, she had seen the movie “Woman in Gold,” about Klimt’s portrait of Bloch-Bauer. Since then, she was on a mission to see the actual portrait. It was a very cold and windy late December morning that I found myself waiting in line with my wife to get into the gallery to see the “Woman in Gold” portrait. We waited for an hour. The movie had made it one of the most popular paintings to see in New York City. We finally got into the gallery, walked upstairs, and saw the portrait. After a few minutes of looking at it, I was done. My opinion of Klimt’s work had not changed. But my wife kept looking at the painting. She circled around the room and looked at it from seemingly all the possible angles. She walked into a different room and looked at different pieces of art and then went back into the room in which the “Woman in Gold” hangs. She looked at it again and again. I was stupefied about what captured her attention. After we left the gallery, she said it was so beautiful, so breathtakingly beautiful. I asked her what was beautiful about it; I just didn’t see what captured her so much. She said, “Oh, you don’t know the story. You need to watch the movie.”

A few days later, I watched the movie, “Woman in Gold,” which tells the story of Maria Altmann trying to reclaim Klimt’s portrait of Adele Bloch-Bauer, who was Altmann’s aunt. When Altmann was young, in the years before World War II, she lived in Vienna in the same house as her aunt. They had a very close relationship. Altmann, who was Jewish and from a wealthy family, fled Vienna just as the Nazis were about to detain her. Her escape was daring, as the movie portrayed, so daring that as I watched the movie, I grew anxious that Altmann would get caught and be sent to the concentration camps. But she escaped. Eventually, she made her way to the U.S., where she lived the remainder of her life. During her life in the U.S., she often remembered the portrait Klimt painted of her aunt, the portrait that graced her childhood Viennese home. But the Nazis stole the portrait, and after the war, the Austrian government claimed the portrait belonged to the country, not to Altmann, Bloch-Bauer’s sole surviving heir. Altmann, who in her later life in the U.S. was a woman of modest means, spent years trying to recover the Klimt portrait of her aunt. This was Altmann’s story: a story of her being a refugee, a story of the Nazis killing her family, a story of her family’s history ripped off the walls of their house and then re-appropriated by the Nazis and the Austrian government, and a story of struggle to regain that which was rightfully hers. After years of struggle, the Austrian government returned the Klimt portrait of Adele Bloch-Bauer to Maria Altmann, and now, it hangs in the Neue Gallery in New York City, where Altmann, now deceased, wanted it to hang.

After I watched the movie, my wife said to me, “See why the portrait is so beautiful?” The story—the awful but amazing story—transformed what I had seen with my eyes into something more. It was more than a mere portrait painted by Klimt. It was the whole story, a story of unspeakable injustice that ended with the triumph of justice. And so it is with our patients. They may come to us anxious. They may be what other clinicians have labeled them—“uncompliant” or “patient does not adhere to treatment plan of getting a screening colonoscopy.” They may come to us with all kinds of diseases and disorders, injustices beyond their control. But their human story transforms our opinions of these unbeautiful aspects of their lives into something beautiful.

I now think of my time in the presence of that Klimt portrait as a time in which I was in the presence of something transcendent, something that inspires awe. I now can think of that portrait as awe-inspiring. Its story transformed my view of it. I now choose to see the portrait as beautiful, and with that choice, the portrait bestows upon me a sense of awe.

Awe, the philosopher Immanuel Kant suggested, is associated with morality. There was something good (in the sense of moral) about the story of how Klimt’s “Woman in Gold” now hangs in the gallery Maria Altmann chose for it. There is something good about restitution, about Altmann’s relentless struggle for restitution—for justice. This struggle inspired in me a feeling of awe. I haven’t gone back to see the portrait again, but even now, the memory I have of standing in its presence is transformed by knowing its story. I feel awe at its beauty, the beauty the story bestowed upon it. Our patients’ stories bestow beauty upon them, and we can choose to stand in their presence with a sense of awe. 

When we view our patients as beautiful, their beauty, not the disease and disorder that injures them, fills our minds. Our minds, then, full of beauty, search for something beyond our patients in order to fit them into a larger scene, the mise en scene of all the beautiful things of their lives—even the beauty of life itself. It is a moment of life untrammeled by the injuries of disease and disorder. When we choose to see our patients as beautiful, we see them in the fullness of their lives, their lives as if they were not beset with injustices. We stand in their presence with a sense of awe—awe that they are here, awe that they are alive. When we do this, we engage in an imaginative exercise that creates life for them. Through our decision to look upon our patients as beautiful, we create the beauty of our patients’ present lives—beauty amid pain and suffering and disease and disorder.

And so it was with my patient who was too anxious to get a colonoscopy. The next time I saw him, I had a new attitude toward him, an attitude in which I thought of his life as beautiful. And I stood in awe of him, at his being alive, at his wanting to do what he needed to do to stay alive. He may have been too anxious to undergo the sedation necessary to get a colonoscopy, but he wanted to be alive. He kept all his appointments with me, after all; he was doing the best he could. I told him so. Well, I didn’t tell him that he was beautiful, but I did say that I cared for him and wanted to do whatever he needed me to do so he could get the colonoscopy. He said he would get the colonoscopy if I went with him. I did; it was a struggle to schedule so that I could go, but I did. We booked the appointment for the procedure. When the day came I met him and his partner at the procedure clinic. I had told the nurse anesthetist ahead of time about my patient’s anxiety, and she and I came up with a plan about what anti-anxiety medication he could take before coming. Even with this medication in his system, he was still anxious. The anesthetist came out to the waiting room and walked with my patient into the procedure room and properly sedated him. He did it. He underwent the sedation necessary and got the colonoscopy. In the end, he didn’t have any polyps. After the procedure, he began treatment for his prostate cancer. His regular nurse practitioner came back from leave, and I have never seen this man again. But I do remember him not so much as an anxious man but as a man who was doing what he could to stay alive.

The intentional choice of viewing our patients as beautiful is a choice of leaning toward justice. When we look upon our patients as beautiful we choose to believe that all patients have the same right to have their injustices redressed. We feel within ourselves the demand to redress their injustices with our everyday, trustworthy acts of nursing care. In fact, it is our nursing care that aims to right our patients’ injustices. Acts of nursing care seek to right the injustices that threaten our patients’ beauty. When we look upon our patients as beautiful, when we see all who need nursing care as beautiful, we transform our thinking in such a way that we see our patients as having the right to have their injustices addressed—whether by restoring or promoting their health or providing them a serene death. Beauty addresses injustice. As Goodrich says, we nurses have a love of beauty (p. 26), and because of this, we address our patients’ injustices.

We can choose to see our patients, in the fullness of their human stories, as beautiful. When we do, we create a moment in our patients’ lives when they are free from injury: we see them as fully alive. In so doing, we bring life to them; we give them the fullness of their lives. When we decide to view our patients as beautiful, we stand before the fullness of their lives with a sense of awe. We vow to do for them what they would do, if they had the will, knowledge, or power, to bring themselves back to the fullness of their lives, even as cancer threatens it or even as they lay dying in pain. Our seemingly most mundane acts of nursing care become sublime—giving a bed bath, changing the bed, holding a spoonful of ice chips up to parched lips, sitting silently by the bed and holding the hand of the dying. Through our decision to look upon our patients as beautiful, these acts become more than merely lifesaving: they become life-giving. Our seemingly mundane acts of nurse care bestow upon our patients that which is justly theirs—life, even as they are dying.

It is as if when we come to our patients to perform our everyday, trustworthy acts of nursing care, we knock at the doors of their lives and present to them a gift, the gift of our care, the gift of looking upon them as beautiful human beings worthy of our care. It is only when we do this that our patients welcome us into their lives. ‘Welcome’ means that we come into our patients’ lives—that we become part of their life stories—with their consent. Our patients, when they welcome us into their lives, consent to our request to be part of their lives. And that is just what looking upon our patients as beautiful is: a request to be part of the healing of their lives, the restoration or the promotion of their lives to health, or to aid them in achieving a peaceful death. It is only when we choose to see the beauty of our patients that they can say to us, “I know that you’re here for my good. I can see this by how you look upon me. And so, I welcome you. I present to you my consent for you to work on my body and mind. I present to you my well-wishes for you to care for me.” This welcome is our patients’ response to our choice of thinking about them as beautiful. 

This material was originally published in Caring Matters Most: The Ethical Significance of Nursing by Mark Lazenby, and has been reproduced by permission of Oxford University Press http://global.oup.com/academic. For permission to reuse this material, please visit http://global.oup.com/academic/rights