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.
Purpose of review: Care surrounding end-of-life has become a major topic in the intensive care medicine literature. Cultural and regional variations are associated with transatlantic debates about decisions to forego life-sustaining therapies and lead to recent international statements. The aim of this review is to provide insight into the decisions to forego life sustaining therapies and end-of-life care in Europe.
Recent findings: Although decisions to forego life-sustaining therapies are increasingly made in European countries, frequency and characteristics of end-of-life care are still heterogeneous. Moreover, even though many determinants of these variations have been identified, epidemiologic and interventional studies still provide additional information. In agreement with public opinions, recent European laws have emphasized the patient's autonomy. In real life, advance care planning is rarely used. Decisions are often made by caregivers (physicians and nurses) or families, these latter being less involved than in North America. Not only ethic divergences between physicians but also cultural variations account for this disparity.
Summary: To optimize end-of-life care in the intensive care unit, there is an urgent need for the development of palliative and multidisciplinary care in Europe. Furthermore, it highlights the need for culturally competent care, adapted to needs and values of every single patient and family. In addition, a lack of communication with families and within the medical team, an uninformed public about end-of-life issues, and insufficient training of intensive care unit staff are crucial barriers to end-of-life care development. Special awareness of professionals and innovative research are needed to promote a high-standard of end-of-life care in the intensive care unit.
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.