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How the proxy makes the decision
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Whether the proxy decision-maker:
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Makes a decision that fits with the person’s own values, wishes, and preferences (values congruence)
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Is able to determine the person’s own values, wishes and preferences about the choices
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Is clear about which risks/side-effects of the study would matter most to the person
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Is clear about which benefits from the study would matter most to the person
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Is clear about which benefits or risks/side-effects from the study would be more important to the person (balancing benefits and risks)
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Experiences of decision-making in this context
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Whether the proxy decision-maker:
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Feels it was the right decision
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Feels satisfied with the decision
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Feels that they had enough time to make a decision
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Feels that the decision process was good (regardless of the outcome)
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Is comfortable with the decision
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Feels that the decision was a wise one
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Feels that they have enough support from others to make a decision
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Personal characteristics that influence the decision
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Whether the proxy decision-maker:
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Recognises that a decision needs to be made (choice awareness)
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Has been informed about the purpose of the study, procedures, risks and benefits
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Has been informed about their role in making the decision
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Understands that the person’s own values, wishes, and preferences affect the decision
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Understands the information needed to make the decision (objective understanding)
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Feels that they understand the information well enough to make the decision (subjective understanding)
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Recognises they do not have enough information about the views of the person to represent their views
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Feels confident in their knowledge to make a decision
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Feels confident to make a decision
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Feels able and has the opportunity to ask questions
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Feels able to express their opinion about each choice
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Feels as involved in the decision as they want to be
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Feels prepared to make the decision
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Is ready to make a decision
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Feels that they can delay their decision if they feel that they need more time
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