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Compassionate Person-Centered Care for The Dying: An Evidence-Based Palliative Care Guide for Nurses

The movie I Never Sang For My Father (1971) opens with the quote “Death ends a life, but it does not end a relationship, which struggles on in the survivor’s mind toward some resolution which it may never find.” For nurses, this can ring true in their personal and professional life. Dr. Bonnie Freeman personally experienced the impact of unskilled, insensitive nursing care during the death of her mother, shortly after she became a nurse herself. Over the next 30 years, Bonnie devoted her life’s work to caring for dying patients and making end-of-life care better for others. She finds that each death experience can be a source of strength to resolve past losses, while providing opportunities to cherish the beauty and important relationships encountered daily. With these insights, she developed a critically acclaimed succinct C.A.R.E.S. model of nursing care at the end of life. Failure to provide competent, compassionate care at the end of life results in needless suffering, indignity, and isolation for the patient, family, and nurse. There is an abundance of philosophical, clinical, and research literature that delineates best practices at the end of life, but nurses don’t often have the time to find, read, and translate them into care needed at the moment. The compact book Compassionate Person-Centered Care for the Dying is a go-to source providing guidance for nurses, from student to expert, to understand the privilege of caring for patients and families at the end of life. The evidence-based C.A.R.E.S. tool makes it easy to hone in on particular issues, while understanding broader biopsychosocial, cultural, and environmental factors that make each case unique. An in-depth review of one actively dying young leukemia patient with graft-versus-host lung disease enhances the reader’s ability to integrate the content into practice. The C.A.R.E.S. tool demystifies the five most common challenges facing those attending to the dying person related to: Comfort, Airway, Restlessness/delirium, Emotional/spiritual support, and Self-care. Strategies to address each of these challenges are delineated. The Comfort section provides concise guidance for managing pain, including medication, dose, and route adjustments that are typically needed when multisystem failure progresses. Efforts to minimize exposure to unnecessary uncomfortable procedures and soothing interventions to support family closeness are included. The Airway section addresses the changing breathing patterns and secretion management issues that take place as death approaches. Pharmacologic and nondrug strategies, including the calming effects of touch and talking to the patient, are detailed. The Restlessness and delirium that commonly accompany the end of life may be treated by meeting underlying biopsychosocial needs, with certain medications and adjusting environmental stimuli. The Emotional and spiritual support section highlights key elements of holistic, humanitarian treatment of the patient and family in a culturally sensitive manner. The final segment of the C.A.R.E.S. approach is Self-care of the health care providers who were touched by the person’s death and the grieving family. Following this stepped approach, nurses can provide the best direct care possible: advocate on behalf of the patient and family to provide effective compassionate care that enables a peaceful death. Weaved throughout the book is the importance of attending to both patient and family-focused needs with a caring presence and simple acts of kindness that minimize isolation and suffering. Self-awareness of one’s own values is of paramount importance to temper potential biases when values are in conflict. To make this information instantly accessible where and when the nurse needs it, a smart phone app of the C.A.R.E.S. tool can be downloaded. There is an entire chapter devoted to recommended Web sites, readings, and references to expand the reader’s knowledge base and access to the latest evidence-based guidelines. Using