Casarett David
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.
J Palliat Med. 2005;8 Suppl 1:S148-60. doi: 10.1089/jpm.2005.8.s-148.
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.
优质姑息治疗的目标是减轻痛苦并提高生活质量。然而,显然姑息治疗的可及性并不一致。这些不足至少部分是由于缺乏可靠的证据来支持临床决策。因此,迫切需要开展研究,以确定护理标准并增加获得优质护理的机会。本文讨论了临终研究的六个伦理方面,研究人员和临床医生在设计和开展姑息治疗研究时应予以考虑。这些方面包括:(1)一项研究是研究还是质量改进;(2)该研究对未来患者的潜在益处;(3)该研究对受试者的潜在益处;(4)该研究对受试者的风险;(5)受试者的决策能力;以及(6)受试者参与研究选择的自愿性。