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Related Experiment Videos

Information needs in terminal illness.

J S Kutner1, J F Steiner, K K Corbett

  • 1Division of General Internal Medicine, University of Colorado Health Sciences Center, Denver 80262, USA. jean.kutner@uchsc.edu

Social Science & Medicine (1982)
|June 16, 1999
PubMed
Summary

Terminally ill patients have diverse needs beyond medical care, including functional changes, family stress, and loss of control. Healthcare providers must individually assess each patient’s unique concerns and expectations.

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Area of Science:

  • Palliative Care
  • Patient-Physician Communication
  • End-of-Life Care

Background:

  • Doctor-patient communication significantly impacts patient outcomes, yet patient expectations are frequently unmet.
  • Effective communication is crucial in terminal illness, where patient values often guide treatment decisions over medical protocols.

Purpose of the Study:

  • To identify key issues and concerns for terminally ill patients receiving palliative care.
  • To investigate if patient characteristics influence their expressed needs and concerns.

Main Methods:

  • A multimethod approach was employed, starting with qualitative interviews.
  • A structured instrument was developed from interview data and administered to a larger cohort of terminally ill patients.

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Main Results:

  • Seven primary issues emerged: functional status changes, role shifts, symptom management (pain), family stress, loss of control, financial burden, and information-seeking conflicts.
  • Patient needs were both disease- and illness-oriented.
  • Few patient characteristics correlated with expressed concerns, highlighting the need for individualized assessment.

Conclusions:

  • Terminally ill patients have broad and diverse needs that extend beyond medical treatment.
  • Healthcare providers must conduct individualized assessments, recognizing that majority opinions may not represent individual patient needs or expectations.