Research Participation by Older Adults at the End-of-Life: Barriers and Solutions

摘要

The purpose of this paper is to elaborate upon barriers to research participation by older adults at end-of-life. We focus on the hospice setting and classify barriers to research participation into six domains:1) societal attitudes towards death; 2) research procedures; 3) health care organizations; 4) agency staff; 5) patients’ families and caregivers; and 6) patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, infringements upon patient self-determination, as well as, potential solutions to these research challenges. Our observation of the complex palliative context included the realization that a singular change would not have large enough impact. We concluded that simultaneous with the need to expand the research base addressing the needs of dying persons is a need to understand the challenges of implementing research projects with older persons at end-of-life.