PURPOSE: Bereavement research has helped to improve end-of-life practices in the ICU. However, few studies have explored bereaved relatives experience of research participation in this context. We aimed to explore the experience of bereaved relatives' participation in the ARREVE study which included three telephone follow-up calls to complete several quantitative tools.
METHODS: Volunteer relatives who participated in the 12-month follow-up call completed a questionnaire about research participation that included ten open-ended questions so that respondents could use their own words and thoughts. These open-ended questions were analyzed using qualitative analysis that examines themes within the data.
RESULTS: 175/311 relatives completed the questionnaire. Three themes were derived from the thematic analysis: (1) struggling: reactivation of emotional distress associated with the ICU experience and the loss is frequent, specifically during the 1st follow-up call. (2) Resilience: as time goes by, research participation becomes increasingly positive. The calls are a help both in giving meaning to the relatives' experience and in accepting the loss. (3) Recognition: research calls can compensate for the absence of support during bereavement.
CONCLUSION: Although some emotional difficulties must be acknowledged, bereavement research is overall associated with benefits, by facilitating emotional adjustments, meaning-making and resilience. Lack of support and social isolation during bereavement are frequent experiences, revealing that support strategies for bereaved relatives should be developed after the loss of a loved one in the ICU.
PURPOSE: The relative merits of immediate extubation versus terminal weaning for mechanical ventilation withdrawal are controversial, particularly regarding the experience of patients and relatives.
METHODS: This prospective observational multicentre study (ARREVE) was done in 43 French ICUs to compare terminal weaning and immediate extubation, as chosen by the ICU team. Terminal weaning was a gradual decrease in the amount of ventilatory assistance and immediate extubation was extubation without any previous decrease in ventilatory assistance. The primary outcome was posttraumatic stress symptoms (Impact of Event Scale Revised, IES-R) in relatives 3 months after the death. Secondary outcomes were complicated grief, anxiety, and depression symptoms in relatives; comfort of patients during the dying process; and job strain in staff.
RESULTS: We enrolled 212 (85.5%) relatives of 248 patients with terminal weaning and 190 relatives (90.5%) of 210 patients with immediate extubation. Immediate extubation was associated with airway obstruction and a higher mean Behavioural Pain Scale score compared to terminal weaning. In relatives, IES-R scores after 3 months were not significantly different between groups (31.9 ± 18.1 versus 30.5 ± 16.2, respectively; adjusted difference, -1.9; 95% confidence interval, -5.9 to 2.1; p = 0.36); neither were there any differences in complicated grief, anxiety, or depression scores. Assistant nurses had lower job strain scores in the immediate extubation group.
CONCLUSIONS: Compared to terminal weaning, immediate extubation was not associated with differences in psychological welfare of relatives when each method constituted standard practice in the ICU where it was applied. Patients had more airway obstruction and gasps with immediate extubation.
TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01818895.
Objective: Many patients go through periods when they are too ill to give consent or to participate in decisions. When this occurs, patient autonomy is best maintained when a surrogate designated by the patient and familiar with his or her values can speak for the patient. The objective of this study was to determine whether people who are not yet ill are ready to accept surrogate designation. Attitudes toward family participation in care were explored also.
Design: Population survey by telephone. Because refusal of life-sustaining treatment is a dramatic example of patient autonomy, the survey used questions about ICU admission.
Setting: General population in France.
Subjects: Representative random sample of 8000 residents of France aged 18 yrs or more.
Main outcome measures: The survey investigated attitudes.
Results: Most respondents said they would like to designate a surrogate (7205 [90%]) and to have their family share in their care (6691 [84%] for bathing, 5629 [70%] for feeding, and 4139 [52%] for tracheal suctioning) and in decisions about their management (6120 [76%]). Among respondents with a spouse, 79% said they would designate the spouse to speak for them. The attitudes were not influenced by ethnicity, religion or education level.
Conclusions: Most people living in France would want a surrogate to represent them should they be incompetent and admitted to an ICU. Primary care physicians should inform their patients about the benefits of discussing illness-related issues among friends and family.
Cet article présente les résultats d'une étude longitudinale pour évaluer le possible stress lié à la morbidité parmi les membres de la famille, 90 jours après la sortie ou le décès d'un parent. Une attention particulière est portée aux symptômes indiquant un risque de troubles post-traumatiques. L'étude a été menée dans 21 unités de soins intensifs médico-chirurgicales en France entre mars 2003 et novembre 2003.
Cet article détaille les résultats d'un essai randomisé prospectif auprès de 34 unités de soins intensifs françaises. Il avait pour objectif de comparer la compréhension du diagnostic, du pronostic, du traitement et de la satisfaction avec l'information fournie par les soignants auprès des représentants de la famille du patient, qui ont reçu ou n'ont pas reçu une brochure d'information en plus des informations standard.
Une équipe de réanimation, ayant mis en place un accompagnement spécifique pour les familles avec un proche mourant à l'unité de soins intensifs, a mené une étude pour connaître l'impact de cet accompagnement. L'enquête a consisté à interroger par téléphone les membres de l'entourage de 126 patients morts dans le service et d'évaluer leurs réponses à l'aide de deux échelles de mesure (Impact of Event scale et Hospital anxiety and depression scale). En conclusion, le fait de laisser, entre autres, du temps à la famille pour parler, de leur donner une brochure avec des pistes de soutien permet aux proches de faire plus simplement leur deuil.