◆ Palliative nursing has an ethos, a moral character, that builds meaning in the context of serious illness and death and dying.
◆ This moral character is defined by the qualities of a caring relationship.
◆ Trustworthiness, moral imagination, attending to the beauty of patients’ humanity, creating a moral space in which patients can flourish, and being present with them are some of these qualities.
In the windowless hospital room lay a man dying of bone-rattling prostate cancer. The stars shined bright on the desert sky, but in this moment misery raked this man’s soul. Between shallow, painful breaths, and the interludes of his wife wiping his beady brow, I asked this man to tell me his story. As a child, he was born and grew up a free man, but here lay in sharp contrast, a 61-year-old man in stateless adulthood. His childhood memories are of being with his siblings and friends, running and playing hide-and-seek in the olive trees in his grandparents’ orchard. Trees even more ancient than his grandparents stood steady while war after war roiled through. Beneath the cover of night, the teenaged-man forcedly packed what cherished belongings he could carry with him and fled his homeland for a distant country not his own. As he started his trek, the man packed away some olive wood that had lain on the ground outside his house. This wood honored the lineage not just of his grandparents, and their parents, and their parents’ parents, but also of all the olive trees that bore witness to his family’s history.
The day I stepped into his story, he was dying—not just dying of prostate cancer but of a misery deep and untouchable by hormone therapy, steroids, opiates, or anything that we, as palliative care clinicians, have in our armamentarium to cure. Since I was a foreign, visiting scholar with a flexible schedule, I decided to sit with him and his wife for a few hours. I had nowhere else urgent to be—no beeping alarms, no intravenous line to change, no medications to give to lure me away; I had only time. And so, it was time I gave this man and his wife. My questions began by asking him about how he came to be in this country, the country of his adulthood but not of his childhood—the country of his fleeing-to but not of his rising-up-in. His story brought us to the olive groves that he lay under at night as a mere youth, looking up at the stars, more stars than he could count, stars that, to be sure, were biblical. Those ancient stars, he imparted, were the same stars King David had lain under after his anointing, the very stars that had guided the Magi to Bethlehem, the stars that Saint Paul used to navigate the road to Damascus, and the stars that the Damascenes used to travel to Mecca to go to the Holy Mosque for the Haj. After only a half hour of talking, the man’s story arrived at what he wished for his final goodbye to this earth. He wanted to see those stars, the stars that observed biblical history and that had shown upon the olive trees of his youth. These ancient stars were calling him home, to his permanent home, a home beyond wars, borders, religions—a home where his ancestors dwell, a home in the stars.
To aid in his final goodbye, I secured clearance from the cancer center to take him and his wife up to the roof of the hospital one night. His pain notwithstanding, it was an ordeal. No elevator went all the way to the roof, so we had to devise a plan that included four of us carrying him up the last flight of stairs. Another helper worked to hold his urinary catheter as we executed the tactical operation. Prior to moving the patient, we placed a mattress for him to lie upon. We did it—we got him there on a stunning desert night when the stars smiled brilliantly at him. He lay there on the mattress with his wife, indulging in a talkative spurt of energy I had not hitherto seen in him. He looked upon the stars, and, in his native tongue, chattered to his wife. She gripped his hand tight, while tears were visible on her face. She did not wipe them. He could not see them as his eyes remained fixed on the stars. She listened, and cried, and held his hand tight. I understood his chattering enough to hear him say that he was ready to go; he wanted to see his family up there—in the stars. A few days later, the man died. It was a welcomed death as his pain had become unremitting. He had fallen into an obtunded state, but now he was with the stars.
Shortly after he had died, I came in and sat with him and his wife. Again, I was able to offer her time by being with her. She clutched a cross in her hands, and I could hear her praying while moving it between her fingers. The woman fell into deep sobs, convulsing in grief, so I continued to be with her. I spoke no words, but rather, I felt all I could do was witness her incomprehensible and ineffable sadness. And then, without words, she handed me that cross. She opened my clenched fingers and placed it into the palm of my hand. She looked up at me and said, “He carved it from the olive wood he took with him. I want you to have it. You are his child.”
Here I had in my hand the cross this man had carved from the olive wood he had taken with him as he escaped his childhood homeland. During a war that had threatened him and his family, he still made it a point to pack this meaningful olive wood with the few belongings he was able to carry. I meditated on the cross of wood and the symbolism of the fallen branches from the trees that had looked upon his family through the centuries. The stars that had witnessed his familial history bore witness to his religious and biblical history and then, finally, to his death.
Caring for this man and his wife was the job of any palliative nurse. And, in a sense, no palliative nurse deserved such a special gift, but the token of the olive cross honored the relationship of the nurse with the patient’s wife and with the patient himself. An ethics of caring is based on the notion that what it means to be a good person—a moral person, that is—has to do with the nature of relationships.1, 2, 3 With this, what it means to be a good palliative nurse has to do with the nature of the relationships nurses develop with their patients and loved ones. This chapter will describe five qualities that are part of a caring relationship and, within the context of palliative care, form the ethos—the moral character—of palliative nursing. These five qualities are trustworthiness, imagination, beauty, space, and presence.
Trustworthiness cuts close to the heart of the ethos of palliative care nursing. Year after year, the public has rated nurses as members of the most trusted of professions.4 Speculation on the potential reasons for the public’s trust is possible, but the most obvious answer is that nurses are, in fact, trustworthy. The contemporary bioethicist Onora O’Neill has convincingly argued that trustworthiness has three components: competence, reliability, and honesty.5
Competency is essential for palliative nurses. This is why the Hospice and Palliative Nursing Association and the Hospice and Palliative Credentialing Center have established minimum experience and knowledge standards for achieving and maintaining certification as a hospice and palliative nurse. The contribution of competence to nursing’s trustworthiness is so important that nurses work together as a community to ensure that each nurse practices safely. Nurses are each other’s keeper, and the keeper of the public’s trust, by working together to make sure that nurses do not harm patients. Competence also involves practicing according to the latest evidence. Nursing science contributes to trustworthiness by guiding practicing nurses through the results of rigorous science to help direct the most efficient ways to bring about patients’ desired goals of care.
Reliability and competence are first cousins because a reliable nurse must first be competent. However, reliability differs from competence in that, to be reliable, nurses must do what they say they will do and be present when they say they will be present. The moral force of reliability is that patients and families can depend on what nurses say to them.
After listening to the man’s stories in the case study, it is clear that the nurse wanted to give the patient a view of the stars before he died. But before the nurse asked the patient whether he wanted to see the stars one last time, the nurse had to have a way to make it happen. The nurse’s own reliability and the reliability of the nurse’s colleagues and the hospital would have otherwise been at stake. So, before the nurse proposed the idea to the patient and his wife, the nurse would have first had to check with colleagues and nursing administration. The hospital administration’s embrace of the idea was dim, but administration understood the importance of the unusual plan for the patient’s and his wife’s wishes. If the nurse had mentioned the plan to the patient and his wife before the nurse had done this homework, the collective reliability of the nurse, the nurse’s colleagues, and the hospital would have been on the line.
The palliative nurse also understands that reliability entwines with honesty. A nurse’s word, to a large degree, verbalizes her or his reliability. In the context of healthcare, honesty, O’Neill suggests, is not just keeping one’s word, but ensuring the absence of deception. When patients and families ask questions for which there is no easy, straightforward answer, it is dishonest for nurses to pretend there is an answer. No medication guarantees a relief of the patient’s symptoms—remember that science traffics in probability, whereas treatment plans favor the odds, rather than guarantees, of success. Based on scientific testing, the probability of a medication’s efficacy for relieving a symptom may be in the patient’s favor, and that is exactly how nurses need to respond to patients’ questions. However, in the end, the medication may not relieve the patient’s symptom. The medication or treatment may fail to work as science suggests it does. Explaining efficacy of medical options should guide nurse–patient communication and will aid in rationalizing why a palliative care team may have to move on to other modalities to attempt symptom relief. The sake of honesty further demands not deceiving patients and their families. Nurses practice in very few certainties other than the singular idea that each human, including the nurse herself, shall one day die. Honesty with patients and their families rests in nurses’ acknowledging that there are no certainties. Nurses cannot deceive patients and their families by withholding information or deceiving them with fake certainties. Rather, being present with them in the indeterminacy of pain and suffering and dying is how nurses do not deceive patients and families.
The second quality of a caring relationship is imagination. Often, not having straightforward answers to medical and spiritual issues overwhelms those in palliative nursing. All nurses have had patients who, before they die, have one last desire that seems impossible to achieve. These situations demand imaginative thinking. The eighteenth-century philosopher, Immanuel Kant, believed that imagination takes an individual back to “first principles,” meaning that imagination brings one back to what matters most and what is most fundamental.6
In the case study, imagination was necessary, as the nurse knew that the patient could not be taken back to his grandfather’s olive trees; the patient was too sick to transport that far. Whatever the nurse could do for the patient had to be imagined right where the patient was. The nurse’s colleagues, the hospital administration, and the nurse had to think new thoughts about how to take the patient back to those memories of lying under the trees and looking up at the stars. They had to use their imaginations to devise a plan to get the patient as close to that experience as possible.
Imagination as described here is deeper than just devising a creative plan to achieve a desired result. Moral imagination means that nurses can feel with their patients and their families. This does not mean that, through empathy, nurses must suffer the same as patients and families suffer. However, it does mean that nurses have to feel, or sympathize, with how important goals, beliefs, and practices are to patients and families. Nurses must work to feel the depth of whatever brings their patients meaning, purpose, peace, and comfort as they face serious illness and even death. This feeling—a feeling named here as compassion, a feeling of caring for what matters to others who suffer—gives nurses the energy to think creatively about how to help patients and families achieve their goals. Furthermore, compassion aids nurses in being faithful to patients’ and families’ beliefs and practices when the odds are against them. Compassionate imagination gives one’s creative solutions legs, not just by thinking about innovative solutions to achieve patients’ and families’ goals, but compassionate imagination requires actively working to bring that solution to fruition. By engaging in imaginative solutions to seemingly intractable problems, nurses see the humanity of their patients. Humanity is, after all, beautiful.
Beauty is another quality of a caring relationship: seeing the beauty of patients’ humanity. The first way to honor patients’ beauty is to listen to them. Not only is listening the process of relationships, according to the contemporary moral psychologist Carol Gilligan, but listening is the only way a provider can discover who patients are and what matters to them as they face serious illness.7 Furthermore, what is distinctive about the beauty of humanity is that humanity can be injured. “Injury,” the contemporary scholar of aesthetics, Elaine Scarry, says, is the opposite of beauty.8 And yet, if, per impossibile, someone were invulnerable to injury, by definition he or she would be incapable of being beautiful. Being beautiful is being open to injury, even though injury is a wrong, as Scarry notes. Serious illness is a wrong in that it opens individuals up to injury by directly challenging their humanity. But amid the injury of serious illness, listening to patients is actively restorative. Listening is the succor that restores their humanity in face of the injury of serious illness. While actively listening, the nurse ceases to be the nurse, the healthcare provider, the medication prescriber, the Other; rather, the nurse becomes a person listening to another person, listening to the other’s joys and sorrows, reminiscences and regrets, hopes and fears. When actively listening, nurses treat their patients not as patients but as people who, though sick and dying, are alive.
The man dying of prostate cancer, in a country not his own, was foreign to the nurse. The nurse could speak the patient’s tongue grammatically, but only a native speaker who had shared the culture and experiences of this patient could so easily share the unspoken symbols of the language. Although the physical language was understood, the underlying humanity brought from the historical culture of the language could have been easily lost in translation without the nurse’s actively listening. It was active work for the nurse to sit and listen to the patient’s stories through this foreign tongue. Nurses may not immediately fully understand their patients because of a lack of shared experiences or culture. After listening to a few stories, though, surely nurses can find deep commonalities and connections. More profoundly, humanity is shared by all; this is a commonality between nurse and patient; everyone shares the same nature: human nature. When nurses listen deeply enough, they hear their own humanity in others’ stories. In hearing one’s own humanity in others, one can then feel the compassion that motivates imagination.
The realities of modern nursing, however, conspire against imagination. Nurses do not have time to sit and listen to patients for hours, much less minutes, on end. Nurses are busy, and the demands of the modern hospital, clinic, and hospice restrict their time. That said, nurses also know from experience that it does not take all that long to listen. A few minutes, sitting down, being attentive, not using the precious time with one’s own words, but being aware of patients’ words and of their emotions as they speak them: this is listening. Present, attentive listening is the kind of listening that restores beauty even as disease and death injure.
In the modern medical industrial complex, patients present to nurses with their humanity injured by serious illness. Some patients present to the nurse dying. The humanity nurses aim to restore through caring relationships may be injured even more by the public spaces of the hospital, the clinic, and the hospice. This includes the machines that make it possible for nurses to deliver quality symptom management. Even when patients present in their homes, nurses bring with them the paraphernalia of the medical complex: the hospital beds and the equipment and machines that would never otherwise be in their homes.
One quality of a caring relationship is to create the space, in the context of the impersonal medical industrial complex, in which patients can still be themselves.9 Of course, this is not simple. By being trustworthy with their patients, by imagining what needs to be done to fulfill patients’ goals, by being faithful to who patients are, and by active listening, nurses open up the space for patients to be who they are—undefined by serious illness. This is part of the reason to become a palliative nurse: to treat patients as the people they are, to provide them the space to be who they are, even as serious illness imperils or takes their lives. For many palliative nurses, it is what sustains them: that moment when they see a smile shine through, a laugh, the confession of fear, the expression of hope, and the stories of a beautiful life. When nurses care that they are trustworthy, imaginative, and listen to find the beauty of their patients’ stories, they then open up the space in the context of serious illness for their patients to be present as themselves.
To be trustworthy with patients, to offer imaginative responses, to listen to stories, to create the space for patients to be themselves in the clinic or their home, nurses must be present. Being present is another quality of a caring relationship. Presence, in the context of palliative nursing, is not nurses adopting a power pose by which to assert themselves and their desires upon patients and families. Presence is, rather, being with patients and families not as cases but as people. When in the presence of other people, nurses respect patients’ capacity to make their own decisions and to be in relationships.10
The capacity to make decisions is essential to what it means to be a person. There are often circumstances where the nurse may not understand, or even agree with, every decision the patient makes. For instance, the patient’s disease may be progressing with every evidence-based treatment already utilized, but the patient still may want to “keep going.” There are infinite reasons why a patient may choose a particular decision or course of action, and the patient may need psychological or spiritual support to come to terms with said reasons. A nurse must not take away the patient’s capacity and ability to make decisions about his or her own care, lest the nurse take away the patient’s personhood. By taking away personhood, the nurse ceases to be in the presence of this human, and, therefore, the ability to be in a caring relationship with this person ceases. For a palliative nurse, this is simply untenable. For palliative nursing, the quality of presence is to be in the presence of a person who makes decisions about his or her own life.
The quality of presence includes respecting people’s capacity to be in relationships. Patients have the capacity to choose with whom they want to be in relationship—including the nurse. Remember, patients come with their own histories around relationships, which may include traumatic relationships. Nurses must be open to patients choosing, or not choosing, to be in relationship with them. If the choice is the latter, it does not negate the role of the palliative nurse. It means, rather, that the nature of the nursing arrangement with the patient becomes more task-oriented. Yet, the nurse, through mindful presence, can still look for moments when the patient is open to relationship. It is in these moments that patients and nurses are present with each other and can make meaning in shared experiences.
The authors believe that that is what happened with the man who died of prostate cancer and with the nurse in the case study. The patient opened himself up to having a relationship with the nurse, even though he had only come to know the nurse in the last few days of his life. It is uncertain whether the patient made some meaning out of his and the nurse’s relationship, but it seems as if he did. He asked his wife to give the nurse the cross the patient had carved out of the wood he had carried with him from the land from which he had long ago been dispossessed. Nor do we know whether the nurse made meaning out of her relationship with the patient and his wife. This gift of presence, however, gave the nurse the opportunity to become a better person, if only by learning to be open to having a relationship with people who seem far from one. The quality of presence is the quality of being open to the choices of patients, including their choices to make meaning out of illness with the nurse by their side. By being present to them—ready for them to choose to be in relationship—the nurse remains open to her or his own growth.
Palliative nursing demands much from nurses; it taxes emotions and spirits. However, if nurses attend to the qualities of a caring relationship through the five qualities articulated here, then the unexpected creation of meaning in the context of relationships with other people for whom nurses care becomes the ethos that carries nurses through these difficulties. These five qualities of a caring relationship—trustworthiness, imagination, beauty, space, and presence—help guide the palliative nurse to honor the humanity of his or her patients and his or her own humanity, too. There surely are other ways of articulating these and other qualities via serendipitous creativity,11 which is an openness to the new meaning one can create in caring for the sick and the dying. But this is what the authors take the ethos—the moral character—of palliative nursing to be: that nurses are in caring relationships with their patients.
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