An empirical study of surrogates' preferred level of control over value-laden life support decisions in intensive care units.

RATIONALE Despite ongoing ethical debate concerning who should control decisions to discontinue life support for incapacitated, critically ill patients, the perspectives of surrogate decision makers are poorly understood. OBJECTIVES To determine (1) what degree of decisional authority surrogates prefer for value-sensitive life support decisions compared with more technical biomedical decisions, and (2) what predicts surrogates' preferences for more control over life support decisions. METHODS This was a prospective study of 230 surrogate decision makers for incapacitated, mechanically ventilated patients at high risk of death. Surrogates reported their preferred degree of decisional authority using the Degner Control Preferences Scale for two types of decisions: a value-sensitive decision about whether to discontinue life support and a decision regarding which antibiotic to prescribe for an infection. MEASUREMENTS AND MAIN RESULTS The majority of surrogates (55%, 127/230; 95% confidence interval, 49-62%) preferred to have final control over the value-sensitive life support decision; 40% (91/230) wished to share control equally with the physician; 5% (12/230) of surrogates wanted the physician to make the decision. Surrogates preferred significantly more control over the value-sensitive life support decision compared with the technical decision about choice of antibiotics (P < 0.0001). Factors independently associated with surrogates' preference for more control over the life support decision were: less trust in the intensive care unit physician, male sex, and non-Catholic religious affiliation. CONCLUSIONS Surrogates vary in their desire for decisional authority for value-sensitive life support decisions, but prefer substantially more authority for this type of decision compared with technical, medical judgments. Low trust in physicians is associated with surrogates preferring more control of life support decisions.

[1]  J. le Gall,et al.  Half the family members of intensive care unit patients do not want to share in the decision-making process: A study in 78 French intensive care units* , 2004, Critical care medicine.

[2]  S. Francis,et al.  Can patients' preferences for involvement in decision-making regarding the use of medicines be predicted? , 2007, Patient education and counseling.

[3]  D. Zatzick,et al.  Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. , 2010, Chest.

[4]  Martin Härter,et al.  Participation preferences of patients with acute and chronic conditions , 2007, Health expectations : an international journal of public participation in health care and health policy.

[5]  Deborah J. Cook,et al.  Decision-making in the ICU: perspectives of the substitute decision-maker , 2002, Intensive Care Medicine.

[6]  F. Lemaire,et al.  Withholding and withdrawal of life support in intensive-care units in France: a prospective survey , 2001, The Lancet.

[7]  A. Abernethy,et al.  Families looking back: One year after discussion of withdrawal or withholding of life-sustaining support , 2001, Critical care medicine.

[8]  G M Kiebert,et al.  A role for the sick role. Patient preferences regarding information and participation in clinical decision-making. , 1997, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[9]  C. Sprung,et al.  Prevalence and factors of intensive care unit conflicts: the conflicus study. , 2009, American journal of respiratory and critical care medicine.

[10]  S L Rosenkranz,et al.  The practice orientations of physicians and patients: the effect of doctor-patient congruence on satisfaction. , 2000, Patient education and counseling.

[11]  Elizabeth Dugan,et al.  Development of abbreviated measures to assess patient trust in a physician, a health insurer, and the medical profession , 2005, BMC health services research.

[12]  Michael W. Bridges,et al.  Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): a reevaluation of the Life Orientation Test. , 1994, Journal of personality and social psychology.

[13]  D. Baker,et al.  Development of a brief test to measure functional health literacy. , 1999, Patient education and counseling.

[14]  J. Sloan,et al.  Decision making during serious illness: what role do patients really want to play? , 1992, Journal of clinical epidemiology.

[15]  D. Patrick,et al.  Patient-physician communication about end-of-life care for patients with severe COPD , 2004, European Respiratory Journal.

[16]  Neeraj Arora,et al.  Patient preferences for medical decision making: who really wants to participate? , 2000, Medical care.

[17]  J A Sloan,et al.  The Control Preferences Scale. , 1997, The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres.

[18]  R. Griffiths,et al.  Expanding the paradigm of the physician's role in surrogate decision-making: An empirically derived framework* , 2010, Critical care medicine.

[19]  M. Antonelli,et al.  Challenges in End-of-Life Care in the ICU: Statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003: Executive Summary , 2004, Intensive care medicine.

[20]  J. Vincent,et al.  Forgoing life support in western European intensive care units: the results of an ethical questionnaire. , 1999, Critical care medicine.

[21]  D. Wendler,et al.  The accuracy of surrogate decision makers: a systematic review. , 2006, Archives of internal medicine.

[22]  Sylvie Chevret,et al.  Risk of post-traumatic stress symptoms in family members of intensive care unit patients. , 2005, American journal of respiratory and critical care medicine.

[23]  Amy P. Abernethy,et al.  Conflict associated with decisions to limit life-sustaining treatment in intensive care units , 2001, Journal of General Internal Medicine.

[24]  Craig A. Smith,et al.  Does God Determine Your Health? The God Locus of Health Control Scale , 1999, Cognitive Therapy and Research.

[25]  W. Levinson,et al.  Not all patients want to participate in decision making , 2005, Journal of General Internal Medicine.

[26]  J. Lowery,et al.  Patient-physician concordance: preferences, perceptions, and factors influencing the breast cancer surgical decision. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[27]  K. Wallston,et al.  The Validity of the Multidimensional Health Locus of Control Scales , 2005, Journal of health psychology.

[28]  D. Angus,et al.  Passive decision-making preference is associated with anxiety and depression in relatives of patients in the intensive care unit. , 2009, Journal of critical care.

[29]  V. Rajput,et al.  Are Physicians' Recommendations to Limit Life Support Beneficial or Burdensome? Bringing Empirical Data to the Debate , 2010 .

[30]  M. Mitchell.  The vortex: families' experiences with death in the intensive care unit , 2003 .

[31]  R. Spitzer,et al.  The Patient Health Questionnaire-2: Validity of a Two-Item Depression Screener , 2003, Medical care.

[32]  B. Lo,et al.  Surrogate decision-makers' perspectives on discussing prognosis in the face of uncertainty. , 2009, American journal of respiratory and critical care medicine.