title: Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making.
abstract: OBJECTIVE
  To improve clinical and ethical understanding of patient preferences for information and involvement in decision making.
  
  
  OBJECTIVE
  To develop and evaluate a clinical tool to elicit these preferences and to consider the ethical issues raised.
  
  
  METHODS
  A before and after study.
  
  
  METHODS
  Three UK hospices.
  
  
  METHODS
  Patients with advanced life-threatening illnesses and their doctors.
  
  
  METHODS
  Questionnaire on information and decision-making preferences.
  
  
  METHODS
  Patient-based outcome measures were satisfaction with the amount of information given, with the way information was given, with family or carer information, and confidence about future decision making. Doctor-based outcome measures were confidence in matching information to patient preference, matching family or carer communication to patient preference, knowing patient preferences and matching future decision making with patient preference.
  
  
  RESULTS
  Of 336 admissions, 101 patients (mean age 67.3 years, 47.5% men) completed the study (control, n = 40; intervention, n = 61). Patient satisfaction with the way information was given (chi2 = 6.38, df = 2, p = 0.041) and family communication (chi2 = 14.65, df = 2, p < 0.001) improved after introduction of the tool. Doctor confidence improved across all outcome measures (all p values < 0.001).
  
  
  CONCLUSIONS
  Patient satisfaction and doctor confidence were improved by administering the questionnaire, but complex ethical issues were raised by implementing and applying this research. The balance of ethical considerations were changed by advanced life-threatening illness, because there is increased risk of harm through delivery of information discordant with the patient's own preferences. The importance of truly understanding patient preferences towards the end of life is highlighted by this study.
authors.affiliation: Department of Palliative Care and Policy, Weston Education Centre, Cutcombe Road, London SE5 9RJ, UK. fliss1@doctors.org.uk
authors.forename: F E M
authors.initials: FE
authors.lastname: Murtagh
authors.forename: A
authors.initials: A
authors.lastname: Thorns
mesh_terms: D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003657:Decision Making; D005190:Family; D017051:Hospice Care / Q000941:ethics / Q000523:psychology; D006801:Humans; D010353:Patient Education as Topic / Q000941:ethics*; D010358:Patient Participation / Q000523:psychology*; D017060:Patient Satisfaction; D026684:Personal Autonomy; D011446:Prospective Studies; D011795:Surveys and Questionnaires