Call for expressions of interest End of life 2023
Background and objectives
Objectives
End-of-life concerns all populations, young or old. Everyone is confronted with it, for themselves or for their loved ones. Yet the aging of the population and technical advances in medicine are generating increasingly complex end-of-life situations. Questions relating to palliative care and the end of life have become not only a societal and economic issue, but also a subject of political, ethical and legal debate, and the subject of more or less intense media coverage depending on the period in a society's history.
The aim of this AMI is to invite researchers to bring out new projects and new themes in this field, and to foster new collaborations between young and established researchers and contribute to new disciplinary interfaces.
It aims to support the design and feasibility phases of projects, followed by the stages of submission to national or international calls for projects.
The work must concern the field of autonomy (old age and/or disability1) and fall within the scope of the human and social sciences (SHS) and/orpublic health.
- Definition of disability according to the 2005 law "From now on, constitutes a disability "any limitation of activity or restriction of participation in life in society suffered in his environment by a person because of a substantial, lasting or permanent impairment of one or more physical, sensory, mental, cognitive or psychic functions, a multiple disability or a disabling health disorder."
Thematics
Projects should concern one of the following research themes:
- Domiciliary trajectory and domiciliary approaches to the end of life of people with disabilities and elderly people losing their autonomy;
- Autonomy of will: analysis of expressions of the will to die of people with disabilities and/or elderly people with loss of autonomy and the associated reactions of family caregivers and professionals;
- End of life for children with disabilities;
- Experiences of bereavement among people with disabilities and elderly people with loss of autonomy, their family caregivers and the professionals who support them.
Allocated resources
Selected projects receive funding for 12 months of up to 20,000 €.
Results of AMI End of Life 2023
| PADOM-PALLI | Acting for the health and improved quality of life of family caregivers of elderly people in palliative care at home |
| SETRAPED | Prospective clinical study evaluating the efficacy of transmucosal midazolam sedation in a standardized pediatric setting |
| EVA-Senior | Expression and reception of "dying wishes" and autonomy(ies) of elderly people living at home: social, psychic and ethical issues |
| AcDomi-Vie | Support for healthcare professionals from the home to the end of life |
| SAPHARI | Feasibility and effectiveness of advance care plans in patients at high risk of death on discharge from geriatric acute medicine: a prospective, multicenter, randomized, controlled, open-label, superiority study. |
Winning projects
PADOM-PALLI
This project aims to develop an interdisciplinary intervention model to guarantee palliative care at home for elderly people who so wish, and to support family carers (by preventing the consequences linked to their responsibilities), in order to improve the quality of life for all of them.
This model will be informed by available empirical data and scientific knowledge. The aim will be to test its feasibility and evaluate its effectiveness in improving the quality of life of caregivers and their access to healthcare services. The project's methodology is based on the conceptual framework for the development and evaluation of complex health interventions proposed by the Medical Research Council (MRC).
It is a three-phase project
It is a three-phase project, each of which corresponds to a research study with specific objectives and questions that will feed into the subsequent phases. Phase 1 will enable the theoretical design and preparation of the project (constitution of an interdisciplinary consortium, systematic literature review, protocol development). Phase 2 will test a tool for assessing the needs of family caregivers (of elderly people cared for by a palliative home care team) via a mixed-methods exploratory study. The results of these two phases will guide the creation of an intervention model to be tested in phase three (interventional study).
Disciplines: geriatrics, palliative care, public health, interventional research
Key words: homecare, family caregivers, the elderly, quality of life, support, healthcare services
Project sponsort: Emmanuel BAGARAGAZA
Etablissement : Maison médicale Jeanne Garnier
Laboratory : Research, teaching and training department of Maison médicale Jeanne Garnier
SETRAPED
Midazolam is the first-line drug in palliative care for proportionate sedation via the venous or subcutaneous route. As these methods of administration are often complicated in pediatrics, the Rhône-Alpes regional pediatric palliative care resource team (ERRSPP) has developed a transmucosal sedation approach using midazolam in the form of Buccolam®, which enables parents, in liaison with the medical team, to manage the symptom at home without delay. However, there are as yet no precise recommendations on this protocol. This research project proposes to study the efficacy and tolerability of midazolam in this indication, as part of a collaborative national evaluation.
For this project, we will set up a team of researchers, who will work in close collaboration
For this project, we will set up a network of researchers able to participate as investigating centers, within the 22 ERRSPPs in France. This will be a prospective multicenter study of minor patients in palliative care, followed by a pediatric palliative care team, presenting a refractory syndrome with an indication for treatment with midazolam. The primary objective is to describe the efficacy of proportionate transmucosal midazolam sedation in these children. The primary endpoint will be the time course of symptom intensity after each administration. Secondary objectives will be to describe the characteristics of the refractory syndrome, the time between midazolam administration and total relief, the number of administrations for total relief, the patient's degree of alertness 5 minutes after each administration, the duration of sedation efficacy and treatment tolerance. Some 50 patients may be recruited over a 24-month period.
Disciplines: pediatric palliative care, clinical research, multidisciplinarity
Key words: proportionate sedation, homecare, multicenter therapeutic trial, regional pediatric palliative care resource teams (RRRSPP)
Project sponsort: Matthias SCHELL
Etablissement : Centre Léon Bérard
Laboratory : ESPPERA team
EVA-Senior
The EVA-Senior project aims to analyze the expression of the "wish to die" among elderly people living at home, according to the social and psychic frameworks in which they are experienced and formulated. The study will also focus on the reactions of family caregivers and healthcare professionals, the resources they mobilize and the support modalities implemented.
The first axis focuses on the direct collection of expressions of the wish to die among the elderly, their diversity and the context in which they are expressed. Indeed, from the simple wish "not to wake up again" to the suicide attempt or request for euthanasia, via refusal of care, these expressions can cover very different realities (proximity of death, discourse on death, expectation of death, projection into death...). This initial analysis will be contrasted with the way in which family caregivers and professionals receive and interpret this "wish to die".
The second axis aims to analyze the way in which the "wish to die" is interpreted by family caregivers and professionals
The second axis aims to analyze the way in which the elderly person conceives his or her autonomy/dependence (of action, thought and will), confronted with the perception held by those around him or her (family caregivers and healthcare professionals). The main issue here is to study the possible links between the experience or fear of a loss of autonomy and the expression of a "wish to die". Looking at the people around us, we will analyze how the perception of the elderly person's autonomy can prevent them from recognizing or, on the contrary, legitimize the expression of this wish to die.
The third axis examines, more broadly, the question of autonomy
The third axis takes a broader look at the representations surrounding the end of life of the elderly, which are conveyed by different conceptions of aging and "dying well", but also those produced by ageism and discrimination. In this sense, we will analyze the effects of the strong media coverage of the issues surrounding end-of-life support and the possible opening up of active assistance in dying on the expression of a wish to die among the elderly.
After the establishment of a "new" system for the protection of the elderly, we will examine the effects of the new system on the expression of a wish to die among the elderly
Once a steering committee has been set up and an interdisciplinary review of the state of the art has been carried out, an exploratory survey protocol will be drawn up and submitted to the local health research ethics committee. An exploratory field phase will then be carried out with healthcare professionals and patient associations. After analysis of these exploratory data, a survey protocol aimed at the elderly and their entourage will be drawn up.
Disciplines: law, bioethics, medicine, philosophy, clinical psychology, sociology
Key words: accompaniment, autonomy, home, elderly, wish to die
Project sponsor : Guillaume GRANDAZZI
Etablissement : UFR Santé, Université de Caen Normandie
Laboratory : CERREV (UR 3918)
AcDomi-Vie
The various laws passed over the last twenty years have focused on strengthening the rights of sick people through the development of palliative care and end-of-life support. A number of studies have highlighted a lack of awareness of the measures put in place by these laws, and in particular the fact that palliative care is still not fully integrated into patient care. It is essential to have a broader concept of end-of-life support, which takes into account all those involved in the home environment. However, the state of the art reveals a poor understanding of the modalities and quality of care at home.
The AcDomi-Vie project focuses on homecare professionals (healthcare professionals and homecare assistants) to analyze the resources they have at their disposal to implement end-of-life support systems in conjunction with home hospitalization, out-of-hospital mobile palliative care teams and coordination support systems (DAC), and to identify the difficulties they encounter and the new possibilities opened up by the ways in which their actions are coordinated.
The research team is based on the results of the AcDomi-Vie project
The research team is based on the coming together of two pre-existing networks involving psychologists, economists, philosophers and doctors. The research fields will be the most advanced coordinated practice structures. The working group will draw up a quantitative survey based on validated scales, aimed at homecare staff, and a qualitative survey based on semi-directive questions, carried out among health professionals in coordinated practice structures (doctors, health managers, nurses, orderlies, paramedics, etc.) as well as homecare assistants. The survey will use appropriate scales to measure the influence of the situational work environment in the home on caregivers' behavior, psychological health, task coordination and quality of care. The semi-directive part of the questionnaires will enable us to better identify facilitating or constraining factors. The study will also look at the perceptions of each category of professional. This project should lead to proposals for improving practices developed collectively to ensure coordinated end-of-life care at home.
Disciplines: law, psychology, public health, palliative care, ethics
Key words: support, end-of-life, home, primary care, coordinated practice
Project sponsor : Johanne SAISON
Etablissement: Faculté des sciences juridiques, politiques et sociales, Université de Lille
Laboratory: Centre de recherche Droits et perspectives du droit (CRDP)
SAPHARI
Geriatric acute medicine (MAG) wards are dedicated to the care of polypathological elderly patients with complex needs. The DAMAGE cohort showed that these patients were at high risk of re-hospitalization and death. This study led to the development of a score to identify patients at high risk of death (greater than or equal to 50%) within a year. In France, there is currently no specific pathway to reduce the risk of re-hospitalization or improve end-of-life conditions following a stay in the MAG. Few Advance Care Plans (ACPs) (which offer patients tools such as the drafting of advance directives and the designation of a trusted support person) are offered. Advance care planning is a complex process requiring correct identification of at-risk patients, training of caregivers and structured intervention with communication to the right care providers. The research group plans to propose a structured case-management intervention to patients with a high DAMAGE score, to support them and their families in carrying out and implementing PSA. This is the first randomized study of its kind. This project is a feasibility study, which is essential in this population of frail elderly patients at high risk of death, as their adherence is not self-evident. The project stands out for its interdisciplinary, societal and participatory approach.
Disciplines : geriatrics, palliative care
Key words: elderly, advance care plans, death, rehospitalization, accompaniment, end of life, case management
Project sponsor : Fabien VISADE
Institution: GHICL - Hôpital Saint Philibert
Department: Geriatric short stay