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  1. Family experiences with non-therapeutic research on dying patients in the intensive care unit.Amanda van Beinum, Nick Murphy, Charles Weijer, Vanessa Gruben, Aimee Sarti, Laura Hornby, Sonny Dhanani & Jennifer Chandler - 2022 - Journal of Medical Ethics 48 (11):845-851.
    Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient. We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological monitoring of dying patients (...)
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