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Information provision in life-threatening illnesses: comprehensive framework.

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Area of Science:

  • Medical Ethics
  • Patient Communication
  • Global Health Equity

Background:

  • Open information sharing benefits patients and families in critical illnesses.
  • Patient preferences for information disclosure vary, with some desiring less than full transparency.
  • Current clinical guidelines lack specific strategies for managing patient non-disclosure preferences.

Purpose of the Study:

  • To develop a conceptual framework and practical guidance for clinicians.
  • To address the spectrum of patient information preferences, particularly when full disclosure is not desired.
  • To support clinicians in navigating complex communication scenarios in life-threatening illnesses.

Main Methods:

  • Convened a multidisciplinary expert stakeholder meeting.
  • Involved 20 expert stakeholders from diverse disciplines and global regions.
  • Utilized qualitative results to inform framework development.

Main Results:

  • A conceptual framework was developed, emphasizing that information value is influenced by clinician and patient/family interpretation.
  • Identified ethical and sociocultural tensions, such as conflicts in autonomy, impacting information value and patient empowerment.
  • Generated practical guidance for clinicians, including fostering connection and maintaining an open attitude.

Conclusions:

  • The developed framework has implications for clinical practice, research, and policy.
  • The framework serves as a foundation for reducing inequities in end-of-life care information globally.
  • Further refinement and testing of the framework are recommended.