HOPE. Home Care Outreach for Palliative Care Education.

Abstract

The goal of this project was to develop and test an educational program to extend the principles of palliative care into home-care agencies. The specific aims were: 1) to assess current practices within select home-care agencies regarding care of the dying; 2) to design the educational program, the HOPE (Home Care Outreach for Palliative Care Education) curriculum, to include relevant content for realistic implementation in home-care agencies; 3) to implement the HOPE project in two home-care agencies; and 4) to assess outcomes of the project and plan for future dissemination to home-care agencies and organizations. A pilot project developed and tested five training modules including overview of end-of-life care, pain management, symptom management, communicating with patients and families, and the death event. A needs assessment survey completed by 134 home-care agencies provided input for the training course development. The five-part curriculum was developed by an interdisciplinary team of investigators and consultants and implemented in two agencies with 52 staff members participating. Two agencies then were selected to participate in pilot testing the curriculum. Precourse and postcourse surveys provided evaluation of the program content. Results from the home-care agency survey demonstrated the need for improving end-of-life care. Only 32% of nonhospice agencies reporting the availability of specially trained nurses for care of the terminally ill, and only 16% of the agencies reported providing such training. Pilot testing of the HOPE curriculum suggested that it was well received by staff members. Assessment of both self-effectiveness and agency effectiveness revealed greater comfort with content such as communication and other symptom management followed by the areas of pain management, managing the death at home, and cultural issues in end-of-life care. The overall rating of end-of-life care increased from a mean rating of 5.97 to 7.42 for self-assessment and from 6.59 to 7.94 for agency assessment (on a scale of 0 to 10, with 0 = not at all effective to 10 = very effective). This project identified areas of education needed to improve care at the end of life. The HOPE curriculum will be refined and extended to reach other home-care agencies to benefit their staffs and the patients they serve. Home care agencies provide extensive care to patients and families facing many physical and psychosocial demands at the end of life. Palliative care education is important to support home-care professionals across all disciplines in optimum end-of-life care. This education should focus on aspects of physical care, such as treatment of pain, dyspnea, confusion, and fatigue, and also to address decisions about physical care, such as hydration/nutrition at the end of life. Psychosocial dimensions of care at home can be improved by attention to issues such as communication with dying patients and families, cultural considerations, and the special care required at the time of the actual death at home.