title: Ethical considerations in end-of-life care and research.
abstract: The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to base clinical decisions. Therefore, there is an urgent need for research that can define the standard of care and can increase access to quality care. This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.
authors.affiliation: Center for Health Equity Research and Promotion at the Philadelphia VA Medical Center, and the Division of Geriatrics, Institute on Aging, University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA. Casarett@mail.med.upenn.edu
authors.forename: David
authors.initials: D
authors.lastname: Casarett
mesh_terms: D026686:Beneficence; D003657:Decision Making / Q000941:ethics; D036262:Empirical Research; D032984:Ethics, Research; D006805:Human Experimentation / Q000941:ethics*; D006801:Humans; D016743:Mental Competency; D010166:Palliative Care / Q000941:ethics*; D011788:Quality of Life; D015203:Reproducibility of Results; D035842:Research Subjects; D013315:Stress, Psychological; D013727:Terminal Care / Q000941:ethics*