title: Involvement of ICU families in decisions: fine-tuning the partnership.
abstract: Families of patients are not simple visitors to the ICU. They have just been separated from a loved one, often someone they live with, either abruptly or, in nearly half the cases, because a chronic condition has suddenly worsened. They must cope with a serious illness of a loved one, while having to adapt to the unfamiliar and intimidating ICU environment. In many cases, the outcome of the critical illness is uncertain, a situation that causes considerable distress to the relatives. As shown by our research group and others, families exhibit symptoms of anxiety (70%) and depression (35%) in the first few days after admission, as well as symptoms of stress (33%) and difficulty understanding the information delivered by the healthcare staff (50%). Furthermore, relatives of patients who die in the ICU are at risk for psychiatric syndromes such as generalized anxiety, panic attacks, depression, and posttraumatic stress syndrome. In this setting of psychological distress, families are asked to consider sharing in healthcare decisions about their loved one in the ICU. This article aims to foster the debate about the shared decision-making process. We have three objectives: to transcend the overly simplistic position that opposes paternalism and autonomy, to build a view founded only on an evaluation of actual practice and experience in the field, and to keep the focus squarely on the patient. Families want information and communication time from the staff. Nurses and physicians need to understand that families can share in decisions only if the entire ICU staff actively promotes family involvement and, of course, if the family wants to participate in all or part of the decision-making process.
authors.affiliation: Medical Intensive Care Unit, Hôpital Saint-Louis, ECSTRA team, Biostatistics and clinical epidemiology, UMR 1153 (Center of Epidemiology and Biostatistic Sorbonne Paris Cité, CRESS), INSERM, Paris Diderot Sorbonne University, Paris, France.
authors.forename: Elie
authors.initials: E
authors.lastname: Azoulay
authors.affiliation: Medical Intensive Care Unit, Hôpital Saint-Louis, ECSTRA team, Biostatistics and clinical epidemiology, UMR 1153 (Center of Epidemiology and Biostatistic Sorbonne Paris Cité, CRESS), INSERM, Paris Diderot Sorbonne University, Paris, France.
authors.forename: Marine
authors.initials: M
authors.lastname: Chaize
authors.affiliation: Medical Intensive Care Unit, Hôpital Saint-Louis, ECSTRA team, Biostatistics and clinical epidemiology, UMR 1153 (Center of Epidemiology and Biostatistic Sorbonne Paris Cité, CRESS), INSERM, Paris Diderot Sorbonne University, Paris, France.
authors.forename: Nancy
authors.initials: N
authors.lastname: Kentish-Barnes
keywords: Bereavement; Communication; End of life; Information; Randomized controlled trials