(Re)Conceptualising 'good' proxy decision-making for research: the implications for proxy consent decision quality

Area of Science:

• Bioethics
• Clinical Research Ethics
• Decision Science

Background:

• Proxy decision-making is crucial for research participants unable to consent.
• Patients and proxies often lack communication regarding research preferences.
• Existing research focuses on informed consent, neglecting proxy decision quality.

Purpose of the Study:

• To develop the first conceptualization of 'good' proxy decision-making for research participation.
• To identify elements of decision quality in proxy decision-making.
• To inform the development of interventions supporting proxy decision-making.

Main Methods:

• Concept synthesis of existing literature.
• Identification of decision quality elements across three decision-making stages.
• Analysis of factors influencing proxy decision-making.

Main Results:

• Defined 'good' proxy decision-making through three key stages: preparedness, the decision process, and outcomes.
• Highlighted the importance of proxy preparedness, including knowledge, values clarification, and preference elicitation.
• Acknowledged the role of uncertainty, decisional conflict, satisfaction, and regret in the proxy decision-making process.

Conclusions:

• A conceptual framework for 'good' proxy decision-making in research is established.
• This conceptualization is vital for developing interventions to enhance proxy decision quality.
• Ensuring proxy decisions accurately reflect patient values and preferences is paramount.