Being with dying people is an integral part of nursing, yet many nurses feel unprepared to accompany people through the process of dying. Today’s fast-paced healthcare environment conditions us to view death as a physiologic event, not as the sacred passage of a life and as a failure not as part of the human life cycle. To create a safe passage for patients and families, we need a holistic approach and skills that allow us to witness the dying process with compassion and strength.
The Professional Training Program in Compassionate End-of-Life Care (CEOLC) explores how we can create that safe passage for our patients and ourselves. The program, which started in 1994, trains healthcare professionals in the psycho-spiritual aspects of care of the dying. This pioneering work has transformed the care of dying people across the United States and the world.
The CEOLC program uses an experiential, discovery model. The foundation of the program is the belief that the wisdom resides in the participants. The learning model is based on mindful learning that includes orientation in the present, openness, flexibility, tolerance of ambiguity and uncertainty, alertness to distinction, the opportunity to experience different contexts, and awareness of multiple perspectives, options, and outcomes simultaneously. Let’s explore the key concepts of this program that helps nurses move toward a more spiritual and compassionate end-of life-practice.
Denial of death is pervasive in our culture. In the Hindu text, the Mahabharata, Yudhistara says, “The most wondrous thing in the world is that all around us people can be dying, and we don’t believe it can happen to us.” The idea that death happens only to others allows us to separate ourselves from the reality that we will die. But to be present at the death of another, we must accept that we could be the person on the other end of the stethoscope. This awareness connects us to the fragility of our lives and the lives of the patients we serve.
When our attention is diverted from our shared humanity, we may miss the gifts of our daily lives and the service we are called to provide. Think about this in terms of your own work and the gift that may be embedded in your practice. How can we connect more fully to our lives, our relationships, our service, and ourselves? Without contemplating our own life and death, we are likely to miss opportunities to support patients and families.
Search for meaning
Questions about what gives life and death meaning are central to our ability to be present during the dying process. What do pain and suffering mean? Is there a gift that people can experience through the dying process? Do we live on after our body functions cease? In asking such questions, we acknowledge that we have deep connections to each other, our work, and something bigger than ourselves. Reflective practices about the meaning of our lives, relationships, fears, and suffering allow us to more fully respond to the fear and suffering of others.
We discover the meaning of our lives by the meaning we give to it. Victor Frankl, who was imprisoned in a Nazi concentration camp, wrote, “Death gives life meaning.” Recognizing the fragility of life and the certainty of death liberates us from the burden that we are in control of our lives and allows us to focus on living each moment to its fullest. If you live every day to the best of your ability, every day, even your final one, is the best day of your life.
Compassionate care at the end of life reflects an integration of these three concepts: not knowing, bearing witness, and acting compassionately.
• Not knowing. Not knowing is a state of mind that’s not attached to ideas about self, others, the world, or particular processes or outcomes. Surrendering to the limits of our minds and our ability to control events or outcomes allows us to hear our inherent wisdom and truth. The idea of not knowing is contrary to traditional healthcare models that are based on expertise, scientific data, and rationality. The space created by not knowing invites new awareness and possibilities to emerge, intuitions to be explored, and preconceptions and assumptions to dissolve.
• Bearing witness. Bearing witness is a way of relating that’s linked to the presence we extend to others. It involves respecting the truth of another person, suspending your judgment about it, and remaining true to and respectful of what another has experienced. This means being present with things as they are. Being in the present moment dissolves attention to the past or future. It involves developing the qualities of stillness, openness, and stability of mind that allow you to be present for the suffering and the sufferer—without fixing or controlling the process or outcome.
• Compassionate action. The foundation of all actions is compassion and service to others. Compassion arises from an open, gentle heart that can feel another’s pain and your own pain and allows you to be present in the face of suffering and take action to relieve suffering and pain. Through actions that reflect integrity of mind and spirit, healing is possible.
These three concepts help nurses work more skillfully with the challenges of suffering, end-of-life care, ethical conflicts, and interdisciplinary collaboration. They help nurses cultivate greater insight, depth, and understanding of the interplay among compassion, mindfulness, and presence and the interconnection between self and others.
Being with suffering
Suffering is universal. Acknowledging that suffering is part of our lives transforms it: We can see that suffering is inescapable, become aware of how we contribute to our own suffering, and find acceptance and more compassion for ourselves and our suffering. This transformation allows us to be in pain but not suffer. This means you can witness suffering but not be overwhelmed by what you witness and experience. Being able to be with suffering requires a certain stability of the mind. Without it, the demands of being a nurse can be overwhelming.
Equanimity, an integral companion to compassion, is the still, calm part of us that keeps us centered in the face of suffering and difficulty we witness. We are able to walk through those crisis situations and not be overwhelmed by them, not be overcome by the experience, but remain competent, clear, and compassionate.
Mindfulness involves bringing attention to what is happening in the mind and body in the present. It cultivates an awareness of feelings, mental states, perceptions, and bodily functions. Mindfulness practices help stabilize the mind through attention and presence, develop insights, and cultivate kindness, compassion, and equanimity. In mindfulness practices, we learn to calm ourselves and stabilize our minds by developing greater concentration and reducing reactivity.
Mindfulness helps us detach ourselves from outcomes. When we provide care for patients, the intended outcome doesn’t always occur, leaving us feeling disappointed, disillusioned, angry, or depressed. But realizing that you’re not in control of people and situations can be liberating. Your job is to accept what is happening now, not to try to change it. Developing this ability to stabilize the mind and release outcomes takes consistent, deliberate practice.
Mindfulness can create an environment in which it’s possible to release your habitual responses and guide thought and behavior in accordance with your intentions. This provides the energy and ability to pursue goals and
be more in control of the mind, which allows you to be more present. And that’s the very thing that a dying person and family members need most—your complete presence. When you calm your mind, develop these practices, and create some spaciousness in yourself, your work becomes less burdensome because you’re not so attached to everything being a particular way.
Another contemplative mindfulness practice involves acknowledging the suffering in the world and our aspiration to be peaceful and helpful to others and ourselves. By directing positive thoughts and energy toward yourself, other people, or all beings, you begin to shift your inner environment and create an intention of well-being and peacefulness toward others and your world. You can practice with certain phrases, such as “May I see my own limits with compassion, just as I view the suffering of others.” This invites you to be compassionate toward the limits of what you can do in the same way that you are compassionate to other people’s suffering. Another phrase might be, “May I offer my care and presence unconditionally knowing they may be met with gratitude, indifference, anger, or anguish.” This helps you understand that how the message is received doesn’t diminish your effort or intention. As you reflect on these phrases, you’ll give attention to what is arising in the heart and mind. This kind of intentional presence to our inner world can be a kind of medicine for the suffering that we witness and experience as part of our caregiving roles.
A different way to learn—and to be
To see things in a new way, nurses need time to reflect and cultivate a deeper awareness of themselves and others. Learning happens when we can create a space that welcomes the diversity of each participant; invites open exploration, safety, and solitude; and fosters trustworthiness and respect. Our most effective learning occurs when we are actively involved and able to deeply experience learning in a personal way.
The essence of compassionate end-of-life care is to come from a place of authentic knowing and bring that into your practice environment. Your most powerful message has nothing to do with words. It’s your ability and willingness to listen to someone who needs to be heard. And if your words come from that still place inside, they will be the right words. When you speak from the heart, you speak from a place of compassion. Consider how this shift in awareness could affect the health of your work environment. And think about the power of your presence for yourself and those you serve.
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For a complete list of selected references, visit www.AmericanNurseToday.com.
Cynda Hylton Rushton, PhD, RN, FAAN, is Associate Professor Nursing, Faculty, Berman Institute of Bioethics, Program Director, Harriet Lane Compassionate Care at the Johns Hopkins University and Children’s Center, Baltimore, Maryland. Joan Halifax Roshi, PhD, is a Buddhist teacher, Zen Priest, and the Founder, Abbot, and Head Teacher of the Upaya Zen Center in Santa Fe, New Mexico. Barbara Dossey, PhD, RN, AHN-BC, FAAN, is Director of Holistic Nursing Consultants in Santa Fe, New Mexico and International Co-Director of the Nightingale Initiative for Global Health in Ottawa, Canada, and Washington, DC.
The authors acknowledge the wisdom and support of the team of interdisciplinary faculty colleagues, the staff, and volunteers of the Upaya Zen Center and, most importantly, the patients and families we serve.