Development of public health priorities for end-of-life initiatives

Objective: Recently, end-of-life (EOL) issues have captured the attention of the public health community. This study reports a project to help state health departments better understand their potential role in addressing EOL issues and develop initial priorities for EOL activities. Methods: The project involved two studies. Study 1 (October 2002 to September 2003) involved a concept mapping process to solicit and organize recommendations from key stakeholders. Concept mapping integrates qualitative group processes with multivariate statistical analysis to represent the ideas of stakeholders visually through reaps. A key-informant approach was used to identify stakeholder participants with expertise in aging, cancer, public health, and EOL. In two meetings, stakeholders used the maps to develop short-, intermediate-, and long-term recommendations for EOL initiatives. Study 2 (October 2003 to September 2004) involved a modified Delphi process with three iterations to prioritize recommendations for initial action from among a group of short-term recommendations. Results: Study 1 resulted in 103 recommendations for EOL initiatives across nine domains. Study 2 resulted in consensus on five initial recommendations from three domains: identifying an EOL point of contact in state health departments, collecting and analyzing data about EOL, incorporating EOL principles into state comprehensive cancer control plans, educating the public about hospice and palliative care, and educating the public about the importance of advance directives. Conclusions: Diverse perspectives of key public health stakeholders resulted in a series of short- and longer-term recommendations for EOL action. These recommendations can guide future efforts by state health departments and other public health agencies to address EOL issues.