PT  - JOURNAL ARTICLE
AU  - van Beinum, Amanda
AU  - Murphy, Nick
AU  - Weijer, Charles
AU  - Gruben, Vanessa
AU  - Sarti, Aimee
AU  - Hornby, Laura
AU  - Dhanani, Sonny
AU  - Chandler, Jennifer
TI  - Family experiences with non-therapeutic research on dying patients in the intensive care unit
AID  - 10.1136/medethics-2021-107311
DP  - 2022 Nov 01
TA  - Journal of Medical Ethics
PG  - 845--851
VI  - 48
IP  - 11
4099  - http://jme.bmj.com/content/48/11/845.short
4100  - http://jme.bmj.com/content/48/11/845.full
SO  - J Med Ethics2022 Nov 01; 48
AB  - 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 prior to and for 30 min following cessation of circulation. At some study centres participation involved installation of bedside computers. At one centre electroencephalogram monitoring was used with a subset of participants. Aside from additional monitoring, the research protocol did not involve deviations from usual end-of-life care.Thematic analysis of interviews suggests most family members did not perceive this minimal-risk, non-therapeutic study to affect their time with patients during the dying process, nor did they perceive research consent as an additional burden. In our analysis, consenting for participation in perimortem research offered families of the dying an opportunity to affirm the intrinsic value of patients’ lives and contributions. This opportunity may be particularly important for families of patients who consented to organ donation but did not proceed to organ retrieval.Our work supports concerns that traditional models of informed consent fail to account for possible benefits and harms of perimortem research to surviving families. Further research into consent models which integrate patient and family perspectives is needed.All data relevant to the study are included in the article.