Family participation in care to the critically ill: opinions of families and staff

BackgroundAllowing family members to participate in the care of patients in intensive care units (ICUs) may improve the quality of their experience. No previous study has investigated opinions about family participation in ICUs.MethodsProspective multicenter survey in 78 ICUs (1,184 beds) in France involving 2,754 ICU caregivers and 544 family members of 357 consecutive patients. We determined opinions and experience about family participation in care; comprehension (of diagnosis, prognosis, and treatment) and satisfaction (Critical Care Family Needs Inventory) scores to assess the effectiveness of information to families and the Hospital Anxiety and Depression score for family members.ResultsAmong caregivers 88.2% felt that participation in care should be offered to families. Only 33.4% of family members wanted to participate in care. Independent predictors of this desire fell into three groups: patient-related (SAPS II at ICU admission, OR 0.984); ICU stay length, OR 1.021), family-related (family member age, OR 0.97/year); family not of European descent, OR 0.294); previous ICU experience in the family, OR 1.59), and those related to emotional burden and effectiveness of information provided to family members (symptoms of depression in family members, OR 1.58); more time wanted for information, OR 1.06).ConclusionsMost ICU caregivers are willing to invite family members to participate in patient care, but most family members would decline.

[1]  C. Sprung,et al.  Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine , 2001, Critical care medicine.

[2]  S Chevret,et al.  Half the families of intensive care unit patients experience inadequate communication with physicians , 2000, Critical care medicine.

[3]  F. Davidoff,et al.  Patient-Centered Medicine: A Professional Evolution , 1996 .

[4]  H. Brody,et al.  Physician Recommendations and Patient Autonomy: Finding a Balance between Physician Power and Patient Choice , 1996, Annals of Internal Medicine.

[5]  A. Prevost,et al.  Psychological effect of witnessed resuscitation on bereaved relatives , 1998, The Lancet.

[6]  H. Burchardi A surrogate for decision-making in the ICU , 2001, Intensive Care Medicine.

[7]  S. Lemeshow,et al.  A new Simplified Acute Physiology Score (SAPS II) based on a European/North American multicenter study. , 1993, JAMA.

[8]  D. Cook,et al.  Patient autonomy versus parentalism. , 2001, Critical care medicine.

[9]  T. Prendergast,et al.  Advance care planning: pitfalls, progress, promise. , 2001, Critical care medicine.

[10]  D. Gudmundson,et al.  Measuring the ability to meet family needs in an intensive care unit. , 1998, Critical care medicine.

[11]  D. Asch,et al.  Decisions to limit or continue life-sustaining treatment by critical care physicians in the United States: conflicts between physicians' practices and patients' wishes. , 1995, American journal of respiratory and critical care medicine.

[12]  F Lemaire,et al.  Meeting the needs of intensive care unit patient families: a multicenter study. , 2001, American journal of respiratory and critical care medicine.

[13]  F. Hammond Involving families in care within the intensive care environment: a descriptive survey. , 1995, Intensive & critical care nursing.

[14]  D L Patrick,et al.  The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. , 2001, Critical care medicine.

[15]  A. Babrow,et al.  Improving advance care planning by accommodating family preferences. , 2001, Journal of palliative medicine.

[16]  Angela Robinson,et al.  Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools , 2001 .

[17]  J. le Gall,et al.  Symptoms of anxiety and depression in family members of intensive care unit patients: Ethical hypothesis regarding decision-making capacity , 2001, Critical care medicine.

[18]  D. Heyland,et al.  Measuring family satisfaction with care in the intensive care unit: the development of a questionnaire and preliminary results. , 2001, Journal of critical care.

[19]  R. Thomson,et al.  Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools , 2001, Quality in health care : QHC.

[20]  J. Vincent Information in the ICU: are we being honest with our patients? The results of a European questionnaire , 1998, Intensive Care Medicine.

[21]  D. Meier,et al.  Autonomy reconsidered. , 2002, The New England journal of medicine.

[22]  J. Vincent,et al.  European attitudes towards ethical problems in intensive care medicine: Results of an ethical questionnaire , 2005, Intensive Care Medicine.

[23]  E. Henneman,et al.  An evaluation of interventions for meeting the information needs of families of critically ill patients. , 1992, American journal of critical care : an official publication, American Association of Critical-Care Nurses.

[24]  S. Badalamenti,et al.  CURRENT PRACTICES REGARDING VISITATION POLICIES IN CRITICAL CARE , 1995, American journal of critical care : an official publication, American Association of Critical-Care Nurses.

[25]  S. Chevret,et al.  French intensivists do not apply American recommendations regarding decisions to forgo life-sustaining therapy , 2001, Critical care medicine.

[26]  T. Simpson,et al.  Implementation and evaluation of a liberalized visiting policy. , 1996, American journal of critical care : an official publication, American Association of Critical-Care Nurses.

[27]  F. Lemaire,et al.  Decision-making capacity and surrogate designation in French ICU patients , 2001, Intensive Care Medicine.

[28]  Elizabeth H Bradley,et al.  Understanding the treatment preferences of seriously ill patients. , 2002, The New England journal of medicine.

[29]  T. Wasser,et al.  Establishing reliability and validity of the Critical Care Family Satisfaction Survey , 2001, Critical care medicine.

[30]  D. Strouse Patient-centered medicine. , 1996, JAMA.

[31]  C. Marsden Family-centered critical care: an option or obligation? , 1992, American journal of critical care : an official publication, American Association of Critical-Care Nurses.

[32]  L. Ackerson,et al.  Do surrogate decision makers provide accurate consent for intensive care research? , 2001, Chest.

[33]  A. Back,et al.  Withdrawing life support and resolution of conflict with families , 2002, BMJ : British Medical Journal.

[34]  N. Molter Families are not visitors in the critical care unit. , 1994, Dimensions of critical care nursing : DCCN.