Care in the Final Moments

by Bethany Wagner

Sitting alone in a hospital next to her mother’s bedside, Bonnie Freeman, RN, DNP ’13, knew she had found her calling. Nursing staff placed them in the farthest corner of the hall so her mother’s labored breathing wouldn’t disturb the other patients. Caretakers rarely came to check on them. “As a young graduate student, I found my experience all too common, and I didn’t want other families to suffer that pain,” said Freeman, who has devoted her career to serving people in their final hours, empowering nurses, and ultimately transforming hospital-based end-of-life care around the nation and world.

Freeman comes alongside cancer patients and their families as a supportive care nurse practitioner at the City of Hope National Medical Center in Duarte, California. She also teaches palliative courses and advocates widespread change in end-of-life care at national conferences. “The medical world tends to downplay the importance of quality care for the dying,” said Freeman, noting that many hospitals lack guidelines specific to supporting the dying. “As a result, many nurses feel helpless, assuming they can do little to help dying patients and bearing the stress alone. This keeps them from meeting the unique emotional and spiritual care required in terminal cases.” Seeking to fill these gaps, she dreamed of creating a comprehensive resource to guide caretakers during those moments of high stress and emotion toward confidence and compassion.

With encouragement from APU faculty and fellow students, she brought this project to fruition during her time as one of the university’s first doctoral nursing students. For her translational project, she developed the CARES tool, a pocket-sized booklet providing guidelines and suggestions for nurses to treat the five most common needs of the dying: Comfort, Airway, Restlessness, Emotional support, and Self-care. Grounded in cutting-edge research and applicable to any hospice situation, the tool offers medical procedures to manage symptoms as well as simple actions to provide comfort, including music, aromatherapy, physical touch, reassuring words, and sitting in quiet solidarity. “Every year, medicine grows more technical, but our humanity and compassion remain our greatest tools as nurses,” said Freeman.

Since integrating the CARES tool into care-of-the-dying training in 2013, City of Hope has seen dramatic increases in the efficiency and quality of care, as well as in the emotional well-being of staff. Following the tool’s Self-care section, City of Hope staff members support one another and receive advice and counseling from their supervisors. In one case, a nurse asked Freeman to check her work, only to reveal that the nurse had not cared for a dying patient since her own mother passed away. “Her eyes filled with tears as she shared her concerns, and I affirmed and encouraged her,” said Freeman. “By attending to our own nurses’ fears and unresolved grief, they find healing, freeing them to embrace their roles as patient advocates.”

In the past two years, the CARES tool garnered international attention and strengthened end-of-life care at almost 100 hospitals and hospice centers worldwide, including sites in Canada, Australia, New Zealand, Dubai, India, Taiwan, and numerous states. Freeman also presented CARES at several national conferences and expanded the CARES philosophy in Compassionate Person-Centered Care for the Dying: AnEvidence-Based Palliative Care Guide for Nurses (Springer, 2015), receiving supportive responses and awards for her efforts in end-of-life education.

Freeman also advocates change outside hospital walls, addressing the way society views the dying process. Her novel Resilient Hearts (Tate Publishing, 2015) follows a palliative care team’s experiences and challenges, giving readers a glimpse into the true world of care of the dying. “We avoid talking about dying, associating it with fear and failure,” said Freeman. But as someone who has stood by countless bedsides as earthly lives came to a close, Freeman sees hope and peace shine most brightly in those final moments. “We don’t always know why suffering happens in this world, but if I can relieve my patients’ pain and comfort their families, a peaceful transition can take place as we celebrate life together.”

Bethany Wagner ’14 is a freelance writer and editor based in Portland, Oregon. bethanykwagner@gmail.com

Originally published in the Spring '16 issue of APU Life. Download the PDF or view all issues.