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Why substitute decision makers provide or decline consent for ICU research studies: a questionnaire study
Sangeeta Mehta1, Friederike Quittnat Pelletier, Maedean Brown
1Department of Medicine and Interdepartmental Division of Critical Care Medicine, Mount Sinai Hospital, 600 University Ave, 18-216, Toronto, ON M5G 1X5, Canada. geeta.mehta@utoronto.ca
Intensive Care Medicine
|November 29, 2011
Summary
Substitute decision makers (SDMs) consent to intensive care unit (ICU) research for altruism and potential benefit. Declining SDMs cite patient anxiety, experimental treatment fears, and study risks.
Area of Science:
- Critical Care Medicine
- Bioethics
- Informed Consent
Background:
- Informed consent for research in intensive care units (ICUs) often relies on substitute decision makers (SDMs).
- Understanding SDM motivations is crucial for ethical research conduct.
Purpose of the Study:
- To explore the reasons why SDMs agree or decline research participation for critically ill adult family members in the ICU.
- To identify factors influencing SDM consent decisions in critical care research.
Main Methods:
- Two distinct questionnaires were administered to SDMs who either agreed (AGREE group) or declined (DECLINE group) research participation.
- Questionnaires assessed SDM views on research, consent process, and specific reasons for their decision.
Main Results:
- Ninety-six SDMs participated (68 AGREE, 27 DECLINE).
- Altruistic reasons (helping others, medical progress) and trust in the medical team motivated consent.
- Anxiety, fear of experimental treatment, and concern over study risks were primary reasons for declining.
Conclusions:
- SDMs' decisions to consent are driven by potential benefits and altruism.
- Barriers to consent include SDM anxiety, fear of harm to the patient, and concerns about experimental treatments.
- Addressing SDM anxieties and fears is essential for improving research participation in ICUs.
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