NHPCO Task Force Statement on the Ethics of Hospice Participation in Research

There is an urgent need for robust empirical data to guide the assessment and treatment of patients near the end of life and ways in which hospices and national professional organizations can begin to overcome some of these challenges.

Abstract

There is an urgent need for robust empirical data to guide the assessment and treatment of patients near the end of life. Because they are important providers of end-of-life care in this country, hospices have an important role to play in facilitating this research. However, hospices may also face considerable ethical challenges in doing so. This task force statement begins by discussing the importance of hospices' potential contributions to research. Next, we describe ways in which characteristics of hospice patients, and hospices' structure, create ethical challenges that may limit these contributions. We conclude by proposing ways in which hospices and national professional organizations can begin to overcome some of these challenges.