Living with dying
Nurses enter into hospice and palliative care practice for our own special and individual reasons. Some of us have experienced our own losses and hope to make the transition to death a healing experience for others. Some of us have recognized the truth of our own mortality — understanding that, as humans, our fate (and perhaps our gift) is knowing that we will someday die. Some of us come to work with dying people to learn and to ease the passage in whatever ways we can, by being midwives to the dying.
Our reasons for entering this type of nursing practice vary, and the day-to-day experience of working with dying people will affect each of us differently. Despite our differences, however, we share some commonalities. These include the importance of reflection, the need to pull from abundance in providing care, the sometimes difficult task of maintaining compassion for others and ourselves, and the need to maintain balance in our lives.
We also need expertise in dealing with difficult family dynamics and responding to family situations that create discomfort and dissent. Finally, we need ways to obtain support through our systems, our colleagues, and our own attention to self-care — a required quality that allows us to stay grounded in the midst of suffering.
A view of death
Western civilization as we know it is largely a death-denying culture. We’ve changed death from a natural personal and social event to a technology-driven medical event. Palliative care principles are designed to ease suffering at least in part by reframing death as a natural part of life.
The dying process has been compared to the birthing process, and the analogy is useful. Both birthing and dying are natural parts of life that involve physical, psychological, and spiritual dimensions. There’s nothing
clean or easy about either one. And these natural processes have been going on as long as life has existed; medicalization is but a recent trend.
clean or easy about either one. And these natural processes have been going on as long as life has existed; medicalization is but a recent trend.
Strategies for rehumanizing death
Reintroduce a peaceful sense of harmony between dying people and the process of dying.
Provide the support of community participation in dying rituals.
Support the harmonious acceptance of death as ordinary and natural, not a social evil.
Emphasize the comforting roles of fellowship, ritual, and ceremony.
Facilitate, even mandate, the notion that dying should be a culturally shared community experience.
Culturally legitimize the pain and suffering that often accompanies dying.
Provide a common base of participation and sense of belonging; attach the dying person to the community of living.
The problem with medicalization is that it may dehumanize life experiences. There are several strategies that can be used to transform the medicalized frame in which our culture experiences death. (See Strategies for rehumanizing death.)
Nurses working in the field of palliative care are, of course, committed to many of these strategies. However, dissonance may arise when the cultural view of death as a negative experience collides with the palliative care view that death is a natural part of life. This can lead to isolation. Palliative care nurses may not be able to speak openly about their work in social situations because people prefer not to think about death. There’s little cultural space for discussing the profoundly life-altering experiences witnessed during end-of-life care.
All the more important, then, are the skills and characteristics you’ll need to cultivate to work successfully with dying patients. These include understanding how to monitor your own strengths and limitations, how to deal in a healthy way with difficult patient and family dynamics, and how to work successfully within institutional influences.
Know thyself
When working in an emotionally powerful profession such as palliative care nursing, it’s essential to cultivate self-awareness. Working with dying people is a constant reminder of our human vulnerability. The term vulnerable comes from the Latin word vulnare, which means capable of being
wounded. Awareness of one’s vulnerability can be both a blessing and a curse.
wounded. Awareness of one’s vulnerability can be both a blessing and a curse.
Validating affect and enhancing insight
Validating affect
Supports the other by listening and acknowledging
Allows the recipient to feel heard and understood
Can be provided by an individual or a group
Enhancing insight
Helps the other to work through feelings
Encourages the other to broaden perspectives
Can be provided by an individual or a group
Support and feedback
Considering vulnerability, the wounded healer archetype can be a helpful metaphor for palliative care practice. The wounded healer is an ancient symbol that dates back to Greek mythology. More recently, the wounded healer archetype was popularized by Carl Jung, who posited that only the wounded physician can heal. Jung believed that the healer actually took over the suffering of the patient in the same way that combining two chemical substances creates a changed agent representing both substances.
Applying the wounded healer archetype to nursing practice, we may find ourselves in situations where we literally take on the feelings of our patients, and perhaps of their family members. This assumption of feelings can be a painful process and, while reflection can help in recognizing these dynamics, reflection alone is not enough.
It’s essential for nurses working in these highly charged situations to get support and clinical consultation from trusted others. Clinical consultation may be provided by an individual or a group; regardless of the source, however, a prerequisite to helpful clinical consultation is your ability to trust in that person or group. Clinical consultation can serve multiple purposes; the two that will be highlighted here include validating affect and enhancing insight. (See Validating affect and enhancing insight.)
Reflection is typically triggered when something goes wrong. Otherwise, our actions are often on automatic pilot. But, when a glitch or a problem happens, we’re called to the moment. We may ask, “What happened?” and consider the situation in more detail. If you use reflection alone, however, your own “truth” may be endlessly reinforced and your may not see things from another perspective.
Of course, you may not be ready to hear what you could do differently to alter the outcome of a situation. Certainly, if you’re feeling sad and distressed, it’s important to have your emotions validated. However, remaining open to considering alternative views will let you keep your perspective open and minimizes the chance that you’ll experience burnout.
Likewise, if you’re providing clinical consultation, ask: “Do you want support or do you want feedback?” Most people choose both—but support first. Asking that question encourages the other person to consider what she needs at that particular time. It also reinforces the notion that these are two different but complementary actions.
Also, consider that the wounded healer motif is different from the walking wounded motif. The wounded healer recognizes her vulnerability, while the walking wounded live with trauma without understanding its impact.
Every nurse brings a personal history to practice. Your personal history includes your previous experiences and your understanding of their meaning. (See How to comfort a coworker, page 284.) Working closely with dying people may propel you to experience your own vulnerability while also becoming more open to the experiences of others. This openness may lead to transformative moments that heighten your appreciation of life.
The helping relationship
Caregivers, especially female caregivers, have a tendency to attend to the feelings of others more than to their own feelings and needs. Focusing on interactions and the importance of relationships is a form of altruism that can be profoundly important in shaping our planet in positive ways. However, excessive self-sacrifice can leave one feeling angry, tired, even bitter.
It’s essential that, as caregivers, we attend to our own needs as well as the needs of others. A first step in doing this is exploring our reasons for self-sacrifice. Offering the self should be a choice rather than an obligation. When one offers self out of choice, the self is enlarged rather than diminished.
Healthy self-sacrifice involves a balance on several levels. We balance taking care of others with taking care of ourselves. We balance autonomy with dependence. We balance our energy and our own needs. Healthy self-sacrifice emphasizes self-respect and a commitment to care of the self. Yet, in our culture we have little language that even describes how care for self and care for others should complement each other. We might learn from Eastern culture and belief systems such as Buddhism, which recognize the idea of intricate interdependence. Each of us is embedded in a living matrix that challenges the very notion of a dualism between autonomy and dependence.
Lack of self-care has historically been a problem in nursing; nursing education and practice may too often reinforce what Gordon calls the virtue
script. The virtue script emphasizes self-sacrifice, altruism, and feeling content that these virtues offer their own rewards. These messages contribute what remains as a caring dilemma in nursing, the perceived idea that nurses must care even when caring isn’t valued by Western society.
script. The virtue script emphasizes self-sacrifice, altruism, and feeling content that these virtues offer their own rewards. These messages contribute what remains as a caring dilemma in nursing, the perceived idea that nurses must care even when caring isn’t valued by Western society.
Expert Insights
How to comfort a coworker
I work with a nurse whose 16-year-old daughter died of leukemia about 7 months ago. She speaks to us about Sharon often and sometimes even cries a bit. The other day I heard her conversing with a patient who has the same oncologist Sharon had. They spent about 30 minutes talking and crying. Is this behavior appropriate? Do you think she should transfer out of the oncology unit for a while? — H.R., British Columbia
Let me tell you about Brenda. (She said I could.) Brenda is a great oncology nurse, warm, funny, and caring. Her daughter Kim died of gastric cancer at age 21 — at home, in Brenda’s arms.
Kim had been admitted many times on the oncology floor where Brenda works. During those hospitalizations, Brenda would take time off from work so she could stay with her daughter day and night. As Kim grew more ill, the staff nurses, who loved Brenda and her daughter, had some emotionally difficult days caring for Kim, knowing she was running out of time.
When Brenda returned to work on the oncology floor after Kim’s death, she was welcomed by a fantastic gang of nurses, mothers and fathers all. She’s had good days and bad, but she carries on and continues to give excellent care to her cancer patients. She speaks about Kim to them and shares special hope-filled books that have helped many patients and families during treatments and the terminal phase.
Some days I’ll find her staring at a picture she carries of Kim, tears in her eyes. But if I try to give her a hug, she shoos me away saying, “Don’t get me started, Joy. I don’t want to cry.”
I don’t find any of this behavior inappropriate. If Brenda can’t find compassion and understanding from her nurse-peers, we’d all be in trouble. I see no difference between comforting a patient who’s mourning the potential loss of life and comforting a coworker mourning the loss of a beloved daughter. If not here and now, then where and when?
— JOY UFEMA, RN, MS
Qualities of healthy caregivers
Purposeful use of self— consciously and authentically using self as a therapeutic agent
Lack of ego involvement— recognizing self as part of but not central to the processes that another person is experiencing
Empowerment though the use of resources— keeping informed about appropriate resources and using these for care of self as well as care of patients
Transcendence— embracing the spiritual side of life
Aesthetics— appreciating the beauty of caregiving done from the heart
Support— using support and guidance for the work of caregiving
The helping relationship involves a person giving help, a person receiving help, and the value of the help itself. In palliative care nursing, choosing the right kind of help is essential. That involves not only knowing what is appropriate at one point for our patients and their families, but also being aware of what is needed for ourselves.
Traditionally, many of us have been socialized to be emotionally separate from our work, thus avoiding emotional upheavals. Although keeping emotionally distant may help us avoid getting involved, most of us come into this work to become involved and invested in the care of others. Devaluing care, or limiting our investment in care, separates us from the emotional satisfaction that comes from doing meaningful work.
There are road maps for identifying healthy aspects of caring. Self-awareness has already been addressed as an essential quality for healthy caregiving. In addition, other qualities are needed for healthy caregiving. (See Qualities of healthy caregivers.)
Level of expertise
Nurses develop skill along a beginner-to-expert trajectory. The job of the beginner is to master the multiple tasks required in nursing practice. As you grow in experience and expertise, you can participate in more of what makes excellent caregiving fulfilling and aesthetically pleasing. It’s essential that experienced nurses are aware of this trajectory so as to be kind to nurses new to the palliative care field. Even nurses with several years of experience in other practice settings will be advanced beginners again when moving into a new practice area. Allowing the advanced beginner time to learn new clinical skills and supporting the learner along the way are methods of facilitating successful integration into palliative care.
Recognizing the trajectory involved in developing expertise may reduce the new nurse’s feelings of role stress. Role stress has been described as the difference between a person’s perceptions of a particular role and her achievement within that role. New nurses, especially, are at risk for role stress when their actual job performance doesn’t match the expectations they have of what their performance should be. Role stress may also be worsened when dealing with “difficult” patients, families, and colleagues.
Dealing with difficulty
What makes a patient difficult? Each of us can probably recall a situation where a patient with whom we worked was a special source of discomfort for us. Whether we experienced anger, frustration, sadness, anxiety, or even fear, there was something about the interaction that created a problem for us. (See Joshua and Candice.) In a situation like Joshua’s, you might have felt negative even before you’d met the patient. Often, this preliminary negative affect carries through, and you might find good reason to be even more negative toward the patient at the end of the shift.
Who’s difficult?
The phenomenon of perceptual vigilance causes your attention to be drawn toward certain behaviors. Subsequently, if you believe that there will be a problem, you’ll tend to find supporting evidence to confirm your belief. But, are people really difficult, or is it our response that creates difficulty for us?
When we label another person difficult, it’s because we’re looking at that person’s behaviors rather than looking with them at the cause of the behaviors. The looking at process is one that we use when doing an assessment. We observe subtleties in breathing, skin color, and edema. During the mental status exam, we assess for affect (external manifestation of mood), thought process, and judgment. The looking at process enables us to recognize a rapidly deteriorating situation and to intervene before the situation becomes even worse. Looking at is an essential part of nursing practice.
Just as looking at is valuable, so too, is looking with. Looking with the patient has an important role to play in palliative care practice. Looking with involves considering what it might be like to be that other person. Looking with allows you to cultivate empathy for the other. Generally, the responses of others are understandable if you know what the other’s point of view is. This knowledge involves paying attention to context, including the patient’s history and his unique way of viewing the world. Let’s return to the case example and consider how the patient may be feeling.
Candice’s symptoms are becoming more severe. The things she previously used to cope — minimizing and denying — are no longer working
well. As Candice’s coping mechanisms fail to control her anxiety, she shows her feelings in other ways. She’s frustrated because she’s losing her ability to function. So, like many patients, she moves to control the things around her that she can control. Demanding cold water, which may be seen by the nurse as an irritating minor request, becomes Candice’s way of taking some control over her experiences and of not feeling so alone.
well. As Candice’s coping mechanisms fail to control her anxiety, she shows her feelings in other ways. She’s frustrated because she’s losing her ability to function. So, like many patients, she moves to control the things around her that she can control. Demanding cold water, which may be seen by the nurse as an irritating minor request, becomes Candice’s way of taking some control over her experiences and of not feeling so alone.
Joshua and Candice
Joshua Knight came onto his shift feeling good about the night ahead. He’d enjoyed a brisk run before work and had even found time to pack a dinner for his late-night shift. When he got to report, however, his mood changed. He was scheduled to work with Candice Taylor, a patient who was renowned for being difficult and demanding. Making matters worse, her daughter was coming to visit from out of town and planned to stay the night. Joshua groaned. Although he had never cared for Candice, her reputation was well known. “Why me?,” he thought, “What did I do to deserve this?”