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Research issues 

Research issues
Chapter:
Research issues
Author(s):

Graeme Rocker

, Kathleen A Puntillo

, Élie Azoulay

, Judith E Nelson

, and Max Watson

DOI:
10.1093/med/9780199239245.003.0014
Page of

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date: 06 May 2021

Conducting research at the end of life 348

Damon Scales, Niall Ferguson

Randomized controlled trials and ethical principles at the end of life: a personal view 352

Didier Dreyfuss

Medical research involves applying scientific methods and inquiry to obtain new knowledge that will improve the care of patients, including patients who are approaching the end of their lives. Dying patients comprise a broad range of patients, including critically ill patients who are receiving life support, hospice patients receiving palliative care, and patients at home with terminal illnesses. Excluding such dying patients from clinical research is undesirable because it violates the principle of beneficence by denying patients the opportunity to participate in and benefit from research, and it makes it difficult or impossible to advance knowledge about the care of these patients, thus compromising the development of end-of-life care as an evidence-based specialty. Moreover, exclusion of patients near the end of their lives could be construed as a form of discrimination against this population. The ethical principle of justice supports inclusivity in the conduct of research, and provides a moral imperative to conduct research to improve the care of patients who are near the end of their lives....

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