title: Are special ethical guidelines needed for palliative care research?
abstract: Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort. However, research that involves patients near the end of life creates numerous ethical challenges. Moreover, the inclusion of dying patients in research may make many providers uncomfortable. In short, there seems to be something ethically unique, and uniquely challenging, about palliative care research. This paper considers 4 arguments for this unique status: 1) dying patients are especially vulnerable; 2) adequate informed consent may be difficult to obtain; 3) balancing research and clinical roles is particularly difficult; and 4) the risks and benefits of palliative research are difficult to assess. We conclude that the first three of these arguments are weak, and that special guidelines are not needed. We suggest, however, that the fourth argument may have some merit, and should be the focus of discussion among investigators, providers, and patients.
authors.affiliation: Department of Medicine, University of Pennsylvania, Philadelphia 19104, USA.
authors.forename: D J
authors.initials: DJ
authors.lastname: Casarett
authors.forename: J H
authors.initials: JH
authors.lastname: Karlawish
mesh_terms: D004992:Ethics, Medical; D017408:Guidelines as Topic; D006801:Humans; D010166:Palliative Care / Q000592:standards*; D012106:Research