Abstract and Introduction
Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting. Nurses are inadequately prepared to provide end-of-life (EOL) care because of cure-focused education. Friends and family of dying patients report poor quality of death largely as a result of inadequate communication from health care professionals about the dying process. The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. These acronym organized tools were developed based upon the common symptom management needs of the dying including Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. The CARES tool for nurses improved nursing knowledge and comfort related to EOL care and common symptom management needs of the dying and also enhanced nurses' confidence in communicating about the dying process with friends and family. Final Journey, the friends and family version of the CARES tool, reinforced EOL information for friends and family, helped nurses answer difficult questions, and promoted and enhanced communication between health care professionals and friends and family of the dying.
Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting. End-of-life (EOL) care is primarily focused around supportive measures for the dying patient and their family to achieve the highest quality of death (QOD). Quality of death is defined as a multidimensional construct, which encompasses physical, psychological, social, and spiritual experiences; life closure; death preparation and circumstances of death; and characteristics of health care at the EOL.
Individuals near EOL are often unable to communicate, at which time friends and family (families) of the dying are an important focus of care requiring specific skills, support, and resources. Existing literature demonstrates a significant need for quality improvements in EOL care in the hospital setting with a specific focus on improving communication between health care professionals and family.[2–7]
Families of dying patients desire a more active role in EOL care but are unsure of how to participate because of ambiguous communication from health care professionals. With a lack of communication about the dying process, they become attentive to visual and auditory cues from the patient and environment, leading to assumptions and misunderstandings about prognosis. For example, families may mistake tremors or seizure-like activity for purposeful movement, which can lead to false hope and mistrust in the health care team. Families need to know the difference between a normal dying process as opposed to what they perceive as suffering, to avoid emotional trauma caused by the perception that their loved one suffered while dying.
Nurses play an important role in helping families understand the dying process by communicating clear, direct, and consistent patient information using easily understood language. Nurses skilled and comfortable with EOL discussions improve quality of life and patient satisfaction in the hospital setting. Nursing education regarding EOL care is inadequate, leaving new nurses feeling unprepared and lacking coping skills.[11,12]
Because of the unnecessary patient suffering that can result from this knowledge deficit, the CARES tools were developed by Bonnie Freeman, DNP, RN, ANP-BC, ACHPN, formerly a nurse practitioner in the Department of Supportive Medicine at City of Hope in Duarte, California. The CARES tool is an acronym-organized pocket-sized reference based upon the most common symptom management needs of the dying. This includes Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. It is designed to assist nurses in linking evidence-based knowledge to clinical practice with the goal of achieving a peaceful death. In addition to the CARES tool for nurses, a second CARES tool entitled Final Journey was developed. Final Journey is an acronym-organized (CARES) detailed booklet designed for family members of dying patients that explains the difference between a normal dying process and suffering. Final Journey teaches families about body changes that may happen as part of the normal dying process and what could be a sign of suffering. In addition to basic explanations, it includes recommendations for EOL care that can be provided by families and promotes communication. Use of the CARES tools can assist in optimizing EOL care by ensuring all components are in place to allow for a peaceful death and to support families of the dying during the process.
The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. This project was conducted to answer the following 2 questions: (1) does use of the CARES tool improve nursing knowledge and comfort related to EOL care, and (2) does use of Final Journey improve the EOL experience of families of dying patients? Specific aims include assessing nursing knowledge and comfort related to EOL care, implementing use of the CARES tools, evaluating the impact of the CARES tool on nursing knowledge and comfort related to EOL care, and evaluating the impact of Final Journey on families experience with EOL care.
Journal of Hospice and Palliative Nursing. 2019;21(3):200-206. © 2019 Lippincott Williams & Wilkins