A Qualitative Study of Family Involvement in Decisions About Life Support in the Intensive Care Unit

We explored family involvement in decisions about life support interventions in the intensive care unit study using a critical incident technique to focus on specific case exemplars contributed by participants. A total of 6 family members and 9 health care professionals were interviewed. Participants described 2 options (life support or comfort care) and values associated with options: maintaining quality of life, surviving critical illness, minimizing pain and suffering, not being attached to machines, needing adjustment time, and judicious health care resource use. Barriers to involvement included not being offered alternative options; no specific trigger to initiate decision making; dominant influence of professionals’ values; and families lacking understandable information. Family members are unlikely to engage in decision making unless professionals identify the decision and address other barriers to family involvement.

[1]  G. Elwyn,et al.  Validating a conceptual model for an inter-professional approach to shared decision making: a mixed methods study , 2011, Journal of evaluation in clinical practice.

[2]  D. Heyland,et al.  Development and use of a decision aid for communication with hospitalized patients about cardiopulmonary resuscitation preference. , 2010, Patient education and counseling.

[3]  M. Barry,et al.  Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[4]  M. Barry,et al.  Improving Decision Making at the End of Life With Video Images , 2010, Medical decision making : an international journal of the Society for Medical Decision Making.

[5]  Glyn Elwyn,et al.  Deliberation before determination: the definition and evaluation of good decision making , 2009, Health expectations : an international journal of public participation in health care and health policy.

[6]  L. Sims,et al.  End-of-Life Decision Making and Emotional Burden: Placing Family Meetings in Context , 2009, The American journal of hospice & palliative care.

[7]  P. Marik,et al.  Multidisciplinary Family Meetings in the ICU Facilitate End-of-Life Decision Making , 2009, The American journal of hospice & palliative care.

[8]  France Légaré,et al.  Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals' perceptions. , 2008, Patient education and counseling.

[9]  Karen R. Sepucha,et al.  Developing instruments to measure the quality of decisions: early results for a set of symptom-driven decisions. , 2008, Patient education and counseling.

[10]  T. Koepsell,et al.  Duration of withdrawal of life support in the intensive care unit and association with family satisfaction. , 2008, American journal of respiratory and critical care medicine.

[11]  J. Skinner,et al.  Are Regional Variations in End-of-Life Care Intensity Explained by Patient Preferences?: A Study of the US Medicare Population , 2007, Medical care.

[12]  Sylvia Bereknyei,et al.  Toward shared decision making at the end of life in intensive care units: opportunities for improvement. , 2007, Archives of internal medicine.

[13]  B. Souweine,et al.  A communication strategy and brochure for relatives of patients dying in the ICU. , 2007, The New England journal of medicine.

[14]  Juliana Barr,et al.  Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004–2005 , 2007, Critical care medicine.

[15]  Arthur S Slutsky,et al.  William J. Sibbald: In Memoriam , 2007, Critical Care Medicine.

[16]  J. Montaner,et al.  Individual variability in barriers affecting people's decision to take HAART: a qualitative study identifying barriers to being on HAART. , 2006, AIDS patient care and STDs.

[17]  J. Meyrick What is Good Qualitative Research? , 2006, Journal of health psychology.

[18]  Peter Watson,et al.  Do patients benefit from participating in medical decision making? Longitudinal follow‐up of women with breast cancer , 2006, Psycho-oncology.

[19]  Hsiu-Fang Hsieh,et al.  Three Approaches to Qualitative Content Analysis , 2005, Qualitative health research.

[20]  Paul C Hébert,et al.  Evaluation of a decision aid for making choices about intubation and mechanical ventilation in chronic obstructive pulmonary disease. , 2005, Patient education and counseling.

[21]  Daniel J. Johnson,et al.  Admission to intensive care unit at the end-of-life: is it an informed decision? , 2004, Palliative medicine.

[22]  J. Downie Unilateral Withholding and Withdrawal of Potentially Life-Sustaining Treatment: A Violation of Dignity under the Law in Canada , 2004, Journal of palliative care.

[23]  K. Orfàli Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units. , 2004, Social science & medicine.

[24]  Dawn Stacey,et al.  Validation of a tool to assess health practitioners' decision support and communication skills. , 2003, Patient education and counseling.

[25]  K. Haley,et al.  Intensive communication: Four-year follow-up from a clinical practice study , 2003, Critical care medicine.

[26]  G. Elwyn,et al.  Shared decision making: developing the OPTION scale for measuring patient involvement , 2003, Quality & safety in health care.

[27]  M. Campbell,et al.  Impact of a proactive approach to improve end-of-life care in a medical ICU. , 2003, Chest.

[28]  The family as window onto the world of the patient: involving patients and families in the decision-making process. , 2016, The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres.

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

[30]  Alastair Baker,et al.  Crossing the Quality Chasm: A New Health System for the 21st Century , 2001, BMJ : British Medical Journal.

[31]  K. Oberle,et al.  Doctors' and nurses' perceptions of ethical problems in end-of-life decisions. , 2001, Journal of advanced nursing.

[32]  Cliona Ni Brolchain Do patients wish to be involved in decision making in the consultation? A cross sectional survey with video vignettes. , 2001 .

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

[34]  R. Hall,et al.  End-of-life care in the ICU: treatments provided when life support was or was not withdrawn. , 2000, Chest.

[35]  K. Haley,et al.  An intensive communication intervention for the critically ill. , 2000, The American journal of medicine.

[36]  G. Rocker,et al.  Withholding or Withdrawal of Life Support: The Canadian Critical Care Society Position Paper , 2000, Journal of palliative care.

[37]  F. Harrell,et al.  Decision‐Making and Outcomes of Prolonged ICU Stays in Seriously Ill Patients , 2000, Journal of the American Geriatrics Society.

[38]  T. Clemmer,et al.  Intensive care nurses' experiences with end-of-life care. , 2000, American journal of critical care : an official publication, American Association of Critical-Care Nurses.

[39]  K. Sullivan,et al.  Intubation and mechanical ventilation for COPD: development of an instrument to elicit patient preferences. , 1999, Chest.

[40]  C. Robertson,et al.  A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay. , 1998, Critical care medicine.

[41]  S. Keenan,et al.  A retrospective review of a large cohort of patients undergoing the process of withholding or withdrawal of life support. , 1997, Critical care medicine.

[42]  J. Luce,et al.  Increasing incidence of withholding and withdrawal of life support from the critically ill. , 1997, American journal of respiratory and critical care medicine.

[43]  J. Garrett,et al.  A prospective study of the impact of patient preferences on life-sustaining treatment and hospital cost. , 1996, Critical care medicine.

[44]  C. Lidz,et al.  Letting go: family willingness to forgo life support. , 1996, Heart & lung : the journal of critical care.

[45]  A. Henderson,et al.  Nature of decision-making in the terminally ill patient. , 1996, Cancer nursing.

[46]  C. Viney A phenomenological study of ethical decision-making experiences among senior intensive care nurses and doctors concerning withdrawal of treatment. , 1996, Nursing in critical care.

[47]  G. Makoul,et al.  Health promotion in primary care: physician-patient communication and decision making about prescription medications. , 1995, Social science & medicine.

[48]  K. Vehviläinen-Julkunen NURSES AND FAMILIES. A Guide to Family Assessment and Intervention , 1995 .

[49]  L. I. Southerland,et al.  A comparison of patient, family, and physician assessments of the value of medical intensive care. , 1988, Critical care medicine.

[50]  Lorette K. Woolsey The Critical Incident Technique: An Innovative Qualitative Method of Research , 1986 .

[51]  J. C. Flanagan Psychological Bulletin THE CRITICAL INCIDENT TECHNIQUE , 2022 .