Final Journey: A reference booklet for families of dying patients.

Abstract

189 Background: Family members will carry the memory of the death of their loved-one with them for the rest of their lives. If they perceive their loved-one suffered as they died there is a risk they will develop Post Traumatic Stress Disorder or other psychological dysfunctions. It is crucial the family be educated and holistically supported during the dying process. Health care providers and care givers require information that will enable them to act as patient advocates and work effectively with families toward the common goal of a peaceful death. Resources that provide basic explanations, suggestions for care, open communication, and prepare families and care givers about the dying process are essential. Methods: Final Journey is a patient and family centric booklet developed based on the CARES tool, which is a guide to help medical teams better care for the dying and their family. CARES stands for comfort, airway, restlessness and delirium, emotional and spiritual support, and self-care. Final Journey details in each section what patients and families may experience, helps families understand what constitutes suffering, and suggests what families can do to help their loved ones. Results: There is a need for education tools that are easily understood, pertinent, and made accessible to help improve the dying experience for all parties involved. Final Journey helps assure families are informed and more emotionally prepared. Furthermore, the booklet expands the available resources available to medical providers, allowing them to more effectively address the challenges of caring for the dying. Final Journey will be available as a free download from the Department of Supportive Care Medicine website. Conclusions: We anticipate utilization of the Final Journey booklet will improve knowledge and understanding for health care providers, care givers, and families regarding a normal dying process and how to distinguish this from suffering, provide them suggestions on how to offer support and comfort during the dying process, promote communication between health care providers, care givers, and families of dying patients and supply resources and information on the importance of self-care when working with a dying patient.