Surrogate Informed Consent: A Qualitative Analysis of Surrogate Decision Makers’ Perspectives

Surrogate Informed Consent: A Qualitative Analysis of Surrogate Decision Makers’ Perspectives
Trevor Lane , Elinor Brereton , Carolyn Nowels , Jeffrey McKeehan , Marc Moss , Daniel D Matlock
Annals of the American Thoracic Society, 2 February 2021
Abstract
Rationale
Clinical critical care research often hinges on surrogate informed consent as patients commonly lack decision making capacity due to their acute illness. The surrogate informed consent process has been identified as having flaws and needing improvement. A better understanding of surrogates’ perspectives is required in order to understand and address these shortcomings and thereby improve this process.
Objectives
To explore the perspectives of surrogate decision makers of critically ill mechanically ventilated patients about being approached about having their loved one participate in hypothetical research studies.
Methods
We performed semi-structured qualitative interviews of surrogate decision makers of critically ill mechanically ventilated patients exploring their decisional needs surrounding participation in research. These interviews were recorded and transcribed verbatim. A thematic analysis of transcripts was performed with an iterative group framework using a mixed inductive and deductive approach.
Results
A sample of 21 surrogate decision makers were interviewed. Thematic saturation was achieved by consensus of the investigators. We identified trust as a unifying domain for the themes that emerged through the analytic process. Embedded within the domain of trust, two central themes became apparent: knowledge-based trust and context-based trust. Knowledge-based trust includes sub-themes of logistics, accountability, and mutual respect, whereas context-based trust includes trust in the individual clinicians and trust in the hospital system.
Conclusions
Our findings highlight the nuanced layers of trust central to the surrogate informed consent process. To enhance the surrogate informed consent process for participation in critical care research studies it is crucial that researchers recognize the inherent importance of trust to ensure an effective informed consent process.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s