NUrsing Homes End of Life care Program (NUHELP): developing a complex intervention

Abstract

Background: Nursing homes are likely to become increasingly important as end-of-life care facilities. Previous studies indicate that individuals residing in these facilities have a high prevalence of end-of-life symptoms and a significant need for palliative care. The aim of this study was to develop an end-of-life care program for nursing homes in Spain based on previous models yet adapted to the specific context and the needs of staff in nursing homes in the country. Methods: A descriptive study of a complex intervention procedure was developed. The study consisted of three phases. The first phase was a prospective study assessing self-efficacy in palliative care (using the SEPC scale) and attitudes towards end-of-life care (using the FATCOD-B scale) among nursing home staff before and after the completion of a basic palliative care training program. In the second phase, objectives were selected using the Delphi consensus technique, where nursing home and primary care professionals assessed the relevance, feasibility, and level of attainment of 42 quality standards. In phase 3, interventions were selected for these objectives through two focus group sessions involving nursing home, primary care, and palliative care professionals. Results: As a result of the training, an improvement in self-efficacy and attitudes towards end-of-life care was observed. In phase 2, 14 standards were selected and grouped into 5 objectives: to conduct a comprehensive assessment and develop a personalized care plan adapted to the palliative needs detected; to provide information in a clear and accessible way; to request and record advance care directives; to provide early care with respect to loss and grief; to refer patients to a specialized palliative care unit if appropriate, depending on the complexity of the palliative care required. Based on these objectives, the participants in the focus group sessions designed the 22 interventions that make up the program. Conclusions: The objectives and interventions of the NUHELP program constitute an end-of-life care program which can be implemented in nursing homes to improve the quality of end-of-life care in these facilities by modifying their clinical practice, organization, and relationship with the health system as well as serving as an example of an effective health intervention program.