Profiles of French young carers taking part in an arts and respite care program.

Young carers (YCs) are children and adolescents who provide meaningful, regular support to a relative with a health problem. In France, only one programme exists to support them: the arts and respite care programme of the national association JADE. The aim of this study is to describe the profiles of YCs who had participated in this programme and to evaluate their expectations, opinions, and the evolution of their quality of life over the course of the programme. All YCs enrolled in the programme between 2017 and 2020 were invited to participate in the study. Upon arrival, the youths completed a self-report questionnaire addressing their sociodemographic and family situations, their caregiving activities, their quality of life, and their expectations for the programme. At the end of each week, a questionnaire evaluating their opinion of the programme and their quality of life was completed. A hundred and seventeen children participated (average age: 12; 71.8% girls). Most YCs provided support to a parent or sibling with a chronic somatic disease. The support mainly concerned doing domestic tasks and providing emotional support for the relative and was significantly higher among adolescents. Their expectations were mainly about getting respite and meeting other young people. Their levels of satisfaction were high and aligned with their expectations. Their quality of life increased significantly. French YCs in this programme had characteristics comparable to those observed internationally. The results underline the importance of respite and the benefits such a programme can bring to YCs.

Evolution of requests to hasten death among patients managed by palliative care teams in France: a multicentre cross-sectional survey (DemandE).

BACKGROUND: Strongly marked ideological positions on the impact of palliative care and limited hard data plague the debate on physician-assisted death. METHODS: A national cross-sectional study on the requests to hasten death (RHD) was conducted among 789 French palliative care organisations. Data were collected for all patients with RHD encountered during year 2010. Data on patients' characteristics, medical, psychological and social context, symptoms, nature of palliative management, patient's evolution and palliative care team's interpretation of the request were obtained. FINDINGS: A majority of centres responded and 342 teams provided descriptions of 783 RHD, 476 by a patient, 258 by relatives or close friends and 49 by the nursing staff. Cancer was the most frequent pathology (72%) and 68% of the patients had entered terminal stage. Patients rarely appeared with uncontrolled pain (3.7%), but had difficulties with feeding (65%), moving (54%), excretion (49%), or were cachectic (39%); 31% were considered to be anxio-depressive; 79% did not give physical reasons for their request; 37% of RHD were maintained and 24% fluctuated despite provision of regular follow-up by a palliative care team to 83% of all cases; 68% of patients died within a month; the interpretation of RHD by the staff was a wish for relief (69%), patient's inextricable situation (44%), actual desire not to continue living (36%) or to be helped to die (30%). INTERPRETATION: The large number of described cases provides, for the first time, comprehensive hard data on the evolution of RHDs in a country that has not legalised euthanasia. Whatever the way RHD are expressed, they are frequently maintained despite adequate palliative care with suitable control of pain and psychological support by specialists.

Circumstances of death in hospitalized patients and nurses' perceptions: French multicenter Mort-a-l'Hôpital survey.

BACKGROUND: In developed countries at present, death mostly occurs in hospitals, but the circumstances and factors associated with the quality of organization and care surrounding death are not well described. METHODS: We designed a large multicenter cross-sectional study to analyze the setting and clinical course of each patient on the day of death. We included 2750 clinical departments of 294 hospitals. Of these, 1033 departments (37.6%) of 200 hospitals (68.0%) contributed to the Mort-a-l'Hôpital survey. Data were collected prospectively by the bedside nurse of each patient within 10 days of the occurrence of death. Main outcome measures included circumstances of death in hospitalized patients; secondary outcomes, nurses' perceptions of quality of end-of-life care. RESULTS: Of the 1033 participating departments, 420 recorded no deaths during the study period and 613 declared at least 1 death. In the 3793 patients who died and were included for assessment, only 925 (24.4%) had loved ones present at the time of death; 70.1% had respiratory distress during the period before death; and only 12.0% were in pain. Written protocols for end-of-life care were available in 12.2% of participating departments. Only 35.1% of nurses judged the quality of dying and death acceptable for themselves. Principal factors significantly associated with this perception were availability of a written protocol for end-of-life care, anticipation of death, informing the family, surrogate designation, adequate control of pain, presence of family or friends at the time of death, and staff meeting with the family after the death. CONCLUSIONS: This large prospective study identifies nonoptimal circumstances of death for hospitalized patients and a number of suggestions for improvement. A combination of factors reflected in the nurses' satisfaction may improve the quality of end-of-life care.