Knowledge and practices of youth awareness on death and dying in school settings: a systematic scoping review protocol.

BACKGROUND: Awareness-raising and education have been identified as strategies to counter the taboo surrounding death and dying. As the favoured venue for youth education, schools have an essential role to play in informing future decision-makers. However, school workers are not comfortable addressing the subjects of death and dying, which, unlike other social issues, have no guidelines to influence awareness of these subjects in youth. OBJECTIVES: To systematically explore the knowledge and practices on raising awareness about death and dying in schools, the viewpoints of the people involved (young people, school workers; parents), and the factors that either promote or hinder awareness practices. METHOD: The scoping review method of Levac and Colquhoun (Implement Sci 5(1):69, 2010) will be used. Using a combination of keywords and descriptors, a body of literature will be identified through 15 databases and through grey literature searches, manual searches, consultation of key collaborators, and the list of relevant literature. Publications since 2009 will be selected if they relate directly to awareness-raising about death and dying in schools. Writings will be selected and extracted by two independent people, and conflicts resolved by consensus. The extracted data will be synthesized using a thematic analysis method. Experts from a variety of disciplines (health sciences, humanities, social sciences, and education) will be consulted to enhance the interpretation of the preliminary results. Results will be presented in narrative form and will include tables and diagrams. CONCLUSION: The results of this scoping review will contribute to the development of educational practices adapted to young people and to the identification of future avenues of research on awareness of death and dying.

Models for designing health-oriented nursing practice : contributions to nursing practice and the nursing discipline / Des modèles pour concevoir la pratique infirmière pour la santé : quels apports à la pratique et la discipline infirmières ?

Health generally represents what nurses should strive for in their practice. However, due to their general nature, the definitions of health are problematic for designing a health-oriented nursing practice. Rather than attempting to design it through a conceptual definition of what health is, some authors from the human sciences suggest using models that allow for a concrete commitment to health. Although this avenue is little explored in nursing, it is suggested that these practice-oriented health models would make it possible to design actionable mechanisms that generate health through practices, like nursing. The objective of this article is, through existing practice-oriented health models, to propose actionable mechanisms of health-oriented nursing practice. By invoking two models, from the writings of the philosopher Nordenfelt, as well as the sociologist Venkatapuram, two illustrations are proposed, both of which allow us to propose different actionable mechanisms. Anchored in the values that support a health-oriented practice, as well as in a descriptive component, this reflection highlights the potential of such models to concretely pursue a health-oriented nursing practice. These proposals appear to be promising for the participation of nursing science in the transdisciplinary understanding of health.

La santé représente généralement ce vers quoi les infirmières devraient tendre dans leur pratique. Toutefois, par leurs natures générales et parfois divergentes, les définitions du concept de santé s'avèrent problématiques pour concevoir une pratique infirmière engagée pour la santé. Plutôt que de tenter de la concevoir par une définition du concept de santé, certains auteurs des sciences humaines suggèrent de recourir à des modèles qui permettent de s'y engager concrètement. À partir de modèles existants de pratique pour la santé, l'objectif de cet article est de proposer des mécanismes actionnables permettant de générer une pratique infirmière pour la santé. Par l'invocation de deux modèles, provenant des écrits du philosophe Nordenfelt, ainsi que du sociologue Venkatapuram, deux illustrations sont proposées, permettant toutes deux de concevoir différents mécanismes actionnables. Par un ancrage dans les valeurs constitutives d'une pratique pour la santé, et par une composante descriptive, cette réflexion met en évidence le potentiel de tels modèles pour poursuivre concrètement une pratique infirmière pour la santé. Ces propositions semblent porteuses à la participation des sciences infirmières à la compréhension transdisciplinaire du concept de santé.

Nursing activities for health promotion in palliative home care: an integrative review.

Palliative care in community contexts is undergoing significant change as a result of public policy and new models of care, which link health promotion principles with palliative care practices. These models support the creation of partnerships between formal care structures and the communities in which care is provided. Given the central role of nurses in the institutional delivery of palliative care, particularly in the home, it is important to provide a systematic description of the activities of nurses that fall within the principles of health promotion. The objective was to describe the diverse range of nursing activities for health promotion that are provided in the palliative home care setting. This is an integrative review. Fifty-five studies listed in the MEDLINE, CINAHL and EMBASE databases, and published between 1999 and December 2022, were identified. Data analysis and presentation of the results were guided by Kellehear's Health-Promoting Palliative Care (HPPC) model. Six themes were identified to describe nursing activities for health promotion in the context of palliative home care: creating a meaningful relationship, supplying medical information, promoting self-care throughout the trajectory, providing emotional support, involving professional or community services and supporting change. The findings point to nurses focusing more on the individual context and on direct care. The relationship with communities in which they work remains unidirectional. However, some HPPC principles are relevant to nursing activities through the contextualization of nurses' actions and their moral responsibility to work towards the respect of patient's values. Being poorly described, how nurses can truly engage their practice towards health-promoting principles, such as the enhancement of support and control over their lives for people living with serious illness, still requires further empirical research.

Listening to Cancer Patients' Narratives During Residency: A Pilot Study on a Communication Skills' Workshop Involving Patients-Partners.

The field of cancer care still lacks best practices in communication. Few postgraduate training programs offer formal training to develop such skills. The patient partnership has been used in medical education to increase the sensitivity of the subjective experiences of patients. In our Canadian center, residents and patient-partners participated in an educational workshop on communication focusing on patient's narrative. The aim of this pilot qualitative study was to explore the experiences of participants in the workshop. Using theoretical sampling, we recruited 6 residents and 6 patient-partners. Semi-structured interviews were conducted and transcribed. A thematic analysis was performed. From analysis, 4 themes emerged: (1) lack of communication skills training; (2) barriers to effective communication in cancer care; (3) the empathy of patient-partners towards the communication challenges faced by residents; and (4) the participants' reactions to the workshop. Based on our findings, our communication skills workshop centered on narrative medicine and involving patient-partners appears feasible. Future research could study its pedagogical value and the optimal learning environment required.

How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol.

Background: Compassionate communities build on health promoting palliative care that aims to address gaps in access, quality, and continuity of care in the context of dying, death, loss, and grief. While community engagement is a core principle of public health palliative care, it has received little attention in empirical studies of compassionate communities. Objectives: The objectives of this research are to describe the process of community engagement initiated by two compassionate communities projects, to understand the influence of contextual factors on community engagement over time, and assess the contribution of community engagement on proximal outcomes and the potential for sustaining compassionate communities. Research Approach and Design: We use a community-based participatory action-research approach to study two compassionate communities initiatives in Montreal (Canada). We develop a longitudinal comparative ethnographic design to study how community engagement evolves in different compassionate communities contexts. Methods and Analysis: Data collection includes focus groups, review of key documents and project logbooks, participant observation, semi-structured interviews with key informants, and questionnaires with a focus on community engagement. Grounded in the ecology of engagement theory and the Canadian compassionate communities evaluation framework, data analysis is structured around longitudinal and comparative axes to assess the evolution of community engagement over time and to explore the contextual factors influencing the process of community engagement and its impacts according to local context. Ethic: This research is approved by the research ethics board of the Centre hospitalier de l'Université de Montréal (approval certificate #18.353). Discussion: Understanding the process of community engagement in two compassionate communities will contribute to a deeper understanding of the relationships between local context, community engagement processes, and their effect on compassionate communities outcomes.

Passing through end-of-life suffering: Possible or not? Results from a qualitative inquiry.

The objective of this study was to understand the factors associated with "passing through suffering" in terminal illness. We interviewed 19 adults diagnosed with terminal disease in palliative stage. Interviews were analyzed using thematic analysis. Four axes of understanding were generated. In the first, participants discussed the will to "feel alive" despite the disease. The second, the process of acceptance, is based on lucidity and on letting go. The third highlights the importance of relationships with others. The fourth axis describes the consequences of this passage through suffering. This study highlights a phenomenon of adapting to suffering.

How compassionate communities are implemented and evaluated in practice: a scoping review.

BACKGROUND: Compassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities. METHODS: We undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings. RESULTS: Sixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes. CONCLUSIONS: The empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

Levels of Medical Intervention and End-of-Life Practices in Long-Term Care Centres.

Background: Levels of medical intervention (LMI) are legal documents in which physicians record patient preferences, or those of their designated substitute decision-makers, concerning end-of-life care. Studies suggest that, although LMI are intended to orient clinical practice, their function tends to be limited to logistical aspects of care. How LMI shapes or guides patient-centred, end-of-life care remains unclear. The aim of this study was to examine possible associations between LMI and certain aspects of end-of-life care practices in LTCC, such as nurse-documented patient experiences of pain, and prescription and administration of medication. Methods: A retrospective descriptive study of 100 files retrieved from a clinical database of deceased patients in LTCCs located in an urban integrated health and social service organization in Québec, Canada, was conducted. Results: Significant associations between last documented LMI and frequency of narcotic prescription and administration, at either regular intervals or PRN, are highlighted. The time delay between last LMI assessment and patient death was one week or less for 39.4% of cases. Conclusion: These results suggest that LMI assessment practices may not correspond to their intended use. A short time frame between last LMI (L-LMI) assessment and patient death may suggest less-than-optimal patient comfort in end-of-life care.

Non-somatic Suffering in Palliative Care: A Qualitative Study on Patients' Perspectives.

Objectives: Suffering is intimately linked to the experience of illness, and its relief is a mandate of medicine. Advances in knowledge around terminal illness have enabled better management of the somatic dimension. Nevertheless, there is what can be called "non-somatic" suffering which in some cases may take precedence. Inspired by Paul Ricoeur's thinking on human suffering, our aim in this qualitative study was to better understand the experience of non-somatic suffering. Methods: Semi-structured interviews were conducted with 19 patients. The results were qualitatively analyzed following a continuous comparative analysis approach inspired by grounded theory. Results: Three key themes synthesize the phenomenon: "the being enduring the suffering", "the being whose agency is constrained", and "the being in relationship with others." The first describes what patients endure, the shock and fears associated with their own finitude, and the limits of what can be tolerated. The second refers to the experience of being restricted and of mourning the loss of their capacity to act. The last describes a residual suffering related to their interactions with others, that of loneliness and of abandoning their loved ones, two dimensions that persist even when they have accepted their own death. Conclusions: Non-somatic suffering can be multifarious, even when minimized by the patient. When evaluating suffering, we must keep in mind that patients can reach a "breaking point" that signals the state of unbearable suffering. In managing it, we probably need to make more room for family and friends, as well as a posture of caring based more on presence and listening.

Distress experienced by lung cancer patients and their family caregivers in the first year of their cancer journey.

OBJECTIVES: Diagnosis of cancer is emotionally threatening not only for patients but also for their family caregivers (FC) who witness and share much of the illness experience. This study compares distress experienced by lung cancer patients and their FC during the year following the diagnosis. METHODS: A prospective cohort study of 206 patients recently diagnosed with inoperable lung cancer (participation rate 79.5%) and 131 FC (participation rate 63.6%) was conducted in an ambulatory oncology clinic in Quebec City (Canada). They completed validated questionnaires regarding their personal and psychological characteristics (Hospital and Anxiety Depression Scale-HADS), in the first months after the diagnosis of lung cancer and after 6 and 12 months. Univariate, bivariate, and linear mixed models were conducted to compare patient and FC distress. RESULTS: At baseline, 7.8% of patients reported distress (HADS total score >15) and their mean distress score was 7.0 ± 4.9 (range 0-42). In contrast, 33.6% of FC presented significant distress and their mean distress score was 12.0 ± 7.2 (P < 0.0001). Proportions of patients and FC with distress remained relatively stable at 6 and 12 months, and at every time point, FC reported higher levels of distress compared to their relative with cancer (P < 0.0001). Comparable trends were found when looking at the mean scores of distress, anxiety, and depression throughout the study. SIGNIFICANCE OF RESULTS: Being diagnosed with lung cancer and going through its different phases seems to affect more FC than patients. The psychological impact of such diagnosis appears early after the diagnosis and does not significantly change over time. These findings reinforce the importance for oncology teams, to include FC in their systematic distress screening program, in order to help them cope with their own feelings and be able to play their role in patient support and care throughout the cancer journey.

Added value of functional neuroimaging to assess decision-making capacity of older adults with neurocognitive disorders: protocol for a prospective, monocentric, single-arm study (IMAGISION).

INTRODUCTION: Assessment of decision-making capacity (DMC) is essential in daily life as well as for defining a person-centred care plan. Nevertheless, in ageing, especially if signs of dementia appear, it becomes difficult to assess decision-making ability and raises ethical questions. Currently, the assessment of DMC is based on the clinician's evaluation, completed by neuropsychological tests. Functional MRI (fMRI) could bring added value to the diagnosis of DMC in difficult situations. METHODS AND ANALYSIS: IMAGISION is a prospective, monocentric, single-arm study evaluating fMRI compared with clinical assessment of DMC. The study will begin during Fall 2021 and should be completed by Spring 2023. Participants will be recruited from a memory clinic where they will come for an assessment of their cognitive abilities due to decision-making needs to support ageing in place. They will be older people over 70 years of age, living at home, presenting with a diagnosis of mild dementia, and no exclusion criteria of MRI. They will be clinically assessed by a geriatrician on their DMC, based on the neuropsychological tests usually performed. Participants will then perform a behavioural task in fMRI (Balloon Analogue Risk Task) to analyse the activation areas. Additional semistructured interviews will be conducted to explore real life implications. The main analysis will study concordance/discordance between the clinical classification and the activation of fMRI regions of interest. Reclassification as 'capable', based on fMRI, of patients for whom clinical diagnosis is 'questionable' will be considered as a diagnostic gain. ETHICS AND DISSEMINATION: IMAGISION has been authorised by a research ethics board (Comité de Protection des Personnes, Bordeaux, II) in France, in accordance with French legislation on interventional biomedical research, under the reference IDRCB number 2019-A00863-54, since 30 September 2020. Participants will sign an informed consent form. The results of the study will be presented in international peer-reviewed scientific journals, international scientific conferences and public lectures. TRIAL REGISTRATION NUMBER: NCT03931148.

Continuity of Cancer Care and Collaboration Between Family Physicians and Oncologists: Results of a Randomized Clinical Trial.

PURPOSE: Collaboration between family physicians (FPs) and oncologists can be challenging. We present the results of a randomized clinical trial of an intervention designed to improve continuity of care and interprofessional collaboration, as perceived by patients with lung cancer and their FPs. METHODS: The intervention included (1) supplying FPs with standardized summaries related to each patient, (2) recommending that patients see their FP after receiving the cancer diagnosis, (3) supplying the oncology team with patient information resulting from FP visits, and (4) providing patients with priority access to FPs as needed. A total of 206 patients with newly diagnosed lung cancer were randomly assigned to the intervention (n = 104) or control group (n = 102), and 86.4% of involved FPs participated. Perceptions of continuity of care and interprofessional collaboration were assessed every 3 months for patients and at baseline and at the end of the study for FPs. Patient distress and health service utilization were also assessed. RESULTS: Patients and FPs in the intervention group perceived better interprofessional collaboration (patients: P <.0001; FPs: P = .0006) than those in the control group. Patients reported better informational continuity (P = .001) and management continuity (P = .05) compared to the control group, but no differences were found for FPs (information: P = .22; management: P = .13). No effect was found with regard to patient distress or health service utilization. CONCLUSIONS: This intervention improved patient and FP perception of interprofessional collaboration, but its effectiveness on continuity of care was less clear for FPs than for patients. Additional strategies should be considered to sustainably improve continuity of care and interprofessional collaboration.

Barriers to end-of-life discussions among hematologists: A qualitative study.

BACKGROUND: Integrated palliative care is correlated with earlier end-of-life discussion and improved quality of life. Patients with haematological malignancies are far less likely to receive care from specialist palliative or hospice services compared to other cancers. AIM: The main goal of this study was to determine hematologists' barriers to end-of-life discussions when potentially fatal hematological malignancies recur. DESIGN: Qualitative grounded theory study using individual interviews. SETTING/PARTICIPANTS: Hematologists ( n = 10) from four hematology units were asked about their relationships with their patients and their attitudes toward prognosis and end-of-life discussions at the time of recurrence. RESULTS: As long as there are potential treatments, hematologists fear that end-of-life discussions may undermine their relationship and the patient's trust. Because of their own representations, hematologists have great difficulty opening up to their patients' end-of-life wishes. When prognosis is uncertain, negative outcome, that is, death, is not fully anticipated. Persistent hope silences the threat of death. CONCLUSION: This study reveals some of the barriers clinicians face in initiating early discussion about palliative care or patients' end-of-life care plan. These difficulties may explain why early palliative care is little integrated into the hematology care model.

Les besoins des patients avec un cancer en soins palliatifs lors des visites médicales: Une étude qualitative.

OBJECTIF: Explorer les besoins du patient vivant avec un cancer en phase palliative et clarifier de quelle manière l'ensemble des intervenants, y compris le médecin de famille, pourrait y répondre de façon plus satisfaisante. TYPE D'ÉTUDE: Une étude qualitative effectuée avec l'aide d'entrevues semi-structurées. CONTEXTE: Services de soins palliatifs (ambulatoire et intrahospitalier). PARTICIPANTS: Douze patients avec un diagnostic de cancer réputés être en stade palliatif ayant déjà reçu de la chimiothérapie ou de la radiothérapie. MÉTHODES: Les entrevues, enregistrées et retranscrites, ont été codifiées et catégorisées pour identifier et définir les thèmes décrivant l'expérience des participants. Les données furent collectées jusqu'à ce que les nouvelles entrevues n'ajoutent plus de nouvelles catégories de résultats. PRINCIPALES CONSTATATIONS: Les participants avec un cancer en phase palliative ont premièrement besoin de l'expertise du médecin. Il existe aussi un grand besoin d'être sécurisé à l'aide d'explications claires au sujet de la maladie, des traitements et du pronostic, à l'aide de rassurances au fil des rencontres patient-médecin et à l'aide de différents dispositifs agissant comme filets de sécurité. En tout temps, les participants ont manifesté le besoin d'être écoutés sans préjugé. L'infirmière pivot en oncologie est tout aussi importante que le médecin dans le suivi; elle peut se substituer au médecin dans la réponse à la plupart des besoins d'ordre relationnels, ainsi que dans le partage d'information et d'explications sur la maladie. CONCLUSION: Le spécialiste ne suffit pas pour répondre à l'ensemble des besoins complexes des patients; il a besoin d'être épaulé, tôt dans le processus, d'un médecin de famille et d'une infirmière pivot. Chaque soignant devrait être sensibilisé aux besoins du patient et s'assurer, au mieux de sa capacité, d'y répondre de façon satisfaisante. Manquer à cette tâche pourrait contribuer à une plus grande solitude et à davantage d'angoisse chez les personnes affectées de maladies graves.

Needs of cancer patients in palliative care during medical visits: Qualitative study.

OBJECTIVE: To explore the needs of cancer patients in palliative care and to determine how care providers, including family physicians, could meet these needs more fully. DESIGN: Qualitative study performed using semistructured interviews. SETTING: Palliative care departments (ambulatory and intrahospital). PARTICIPANTS: Twelve patients with a diagnosis of cancer deemed to be in the palliative phase, who had already received either chemotherapy or radiation treatment. METHODS: The interviews were recorded and transcribed. They were then coded and categorized to identify and define themes describing the participants' experience. Data were collected until new interviews no longer yielded new categories of results. MAIN FINDINGS: Study participants primarily needed the expertise of their physicians, but they also needed reassurance by means of clear information about their disease, its treatment, and the prognosis delivered over the course of patient-physician visits, and by means of various measures that could act as safety nets. Participants needed to be heard without being judged. In terms of follow-up care, the oncology nurse navigator was just as important as the physician and could stand in for him or her to meet most relational needs and share and explain information on the disease. CONCLUSION: Non-family physician specialists cannot meet all of the patients' complex needs; throughout the palliative phase, non-family physician specialists need the support of a family physician and an oncology nurse navigator. Each care provider must be made aware of the patient's needs and ensure that they are met, to the best of his or her ability. Failing to do so might exacerbate the loneliness and anxiety experienced by terminally ill patients.

Exploring the perceptions of physicians, caregivers and families towards artificial nutrition and hydration for people in permanent vegetative state: How can a photo-elicitation method help?

The question of withdrawing artificial nutrition and hydration from people in a permanent vegetative state sparks considerable ethical and legal debate. Therefore, understanding the elements that influence such a decision is crucial. However, exploring perceptions of artificial nutrition and hydration is methodologically challenging for several reasons. First, because of the emotional state of the professionals and family members, who are facing an extremely distressing situation; second, because this question mirrors representations linked to a deep-rooted fear of dying of hunger and thirst; and third, because of taboos surrounding death. We sought to determine the best method to explore such complex situations in depth. This article aims to assess the relevance of the photo-elicitation interview method to analyze the perceptions and attitudes of health professionals and families of people in a permanent vegetative state regarding artificial nutrition and hydration. The photo-elicitation interview method consists in inserting one or more photographs into a research interview. An original set of 60 photos was built using Google Images and participants were asked to choose photos (10 maximum) and talk about them. The situations of 32 patients were explored in 23 dedicated centers for people in permanent vegetative state across France. In total, 138 interviews were conducted with health professionals and family members. We found that the photo-elicitation interview method 1) was well accepted by the participants and allowed them to express their emotions constructively, 2) fostered narration, reflexivity and introspection, 3) offered a sufficient "unusual angle" to allow participants to go beyond stereotypes and habits of thinking, and 4) can be replicated in other research areas. The use of visual methods currently constitutes an expanding area of research and this study stressed that this is of special interest to enhance research among populations facing end-of-life and ethical issues.

Ultimate journey of the terminally ill: Ways and pathways of hope.

OBJECTIVE: To better understand the role of hope among terminally ill cancer patients. DESIGN: Qualitative analysis. SETTING: A tertiary specialized cancer centre in Canada. PARTICIPANTS: Cancer patients in palliative care with an estimated remaining life expectancy of 12 months or less (N = 12) and their loved ones (N = 12) and treating physicians (N = 12). METHODS: Each patient underwent up to 3 interviews and identified a loved one who participated in 1 interview. Treating physicians were also interviewed. All interviews were fully transcribed and analyzed by at least 2 investigators. Interviews were collected until saturation occurred. MAIN FINDINGS: Seven attributes describe the experiences of palliative cancer patients and their caregivers: hope as an irrational phenomenon that is a deeply rooted, affect-based response to adversity; initial hope for miraculous healing; hope as a phenomenon that changes over time, evolving in different ways depending on circumstances; hope for prolonged life when there is no further hope for cure; hope for a good quality of life when the possibility of prolonging life becomes limited; a lack of hope for some when treatments are no longer effective in curbing illness progression; and for others hope as enjoying the present moment and preparing for the end of life. CONCLUSION: Approaches aimed at sustaining hope need to reflect that patients' reactions might fluctuate between despair and a form of acceptance that leads to a certain serenity. Clinicians need to maintain some degree of hope while remaining as realistic as possible. The findings also raise questions about how hope influences patients' perceptions and acceptance of their treatments.

Is shared decision-making vanishing at the end-of-life? A descriptive and qualitative study of advanced cancer patients' involvement in specific therapies decision-making.

BACKGROUND: Little is known about what is at stake at a subjective level for the oncologists and the advanced cancer patients when they face the question whether to continue, limit or stop specific therapies. We studied (1) the frequency of such questioning, and (2) subjective determinants of the decision-making process from the physicians' and the patients' perspectives. METHODS: (1) All hospitalized patients were screened during 1 week in oncology and/or hematology units of five institutions. We included those with advanced cancer for whom a questioning about the pursuit, the limitation or the withholding of specific therapies (QST) was raised. (2) Qualitative design was based on in-depth interviews. RESULTS: In conventional units, 12.8 % of cancer patients (26 out of 202) were concerned by a QST during the study period. Interviews were conducted with all physicians and 21 advanced cancer patients. The timing of this questioning occurred most frequently as physicians estimated life expectancy between 15 days and 3 months. Faced with the most frequent dilemma (uncertain risk-benefit balance), physicians showed different ways of involving patients. The first two were called the "no choice" models: 1) trying to resolve the dilemma via a technical answer or a "wait-and-see" posture, instead of involving the patients in the questioning and the thinking; and 2), giving a "last minute" choice to the patients, leaving to them the responsibility of the decision. In a third model, they engaged early in shared reflections and dialogue about uncertainties and limits with patients, proxies and care teams. These schematic trends influenced patients' attitudes towards uncertainty and limits, as they were influenced by these ones. Individual and systemic barriers to a shared questioning were pointed out by physicians and patients. CONCLUSIONS: This study indicate to what extent these difficult decisions are related to physicians' and patients' respective and mutually influenced abilities to deal with and share about uncertainties and limits, throughout the disease trajectory. These insights may help physicians, patients and policy makers to enrich their understanding of underestimated and sensitive key issues of the decision-making process.

Description of a teaching method for research education for palliative care healthcare professionals.

OBJECTIVE: Despite the rapidly growing availability of palliative care services, there is still much to be done in order to better support clinicians who are starting research programs. Among the barriers identified in the literature, methodological issues and lack of research training programs are often reported. Our aim was to describe an educational research method for healthcare professionals working in palliative care and to report the result of a survey conducted among a three-year sample of students. METHOD: The course was provided for a multidisciplinary group and was open to all healthcare professionals involved in palliative care. It took place over a single session during a full day. We used a 20-question e-survey to assess student outcomes (e.g., satisfaction, current status of their project). RESULTS: We received answers from 83 of the 119 students (70%) who took the course. The majority were physicians (n = 62, 75%), followed by nurses (n = 17, 21%). During the class, students assessed the role of the teacher as an information provider (n = 51, 61%), role model (n = 36, 43%), and facilitator (n = 33, 40%), and considered all of these roles as suitable, with a score of 3.9-4.7 out of 5. Participants reported a high level of support from the teacher, with a mean score of 8.2 (SD, 1.7) out of 10, and good overall satisfaction with a mean score of 7.6 (1.8). Finally, 51 participants (77%) were able to start their research project after the class, 27 (41%) to complete it, and 8 (12%) to submit their research to a journal or conference. SIGNIFICANCE OF RESULTS: Our results suggest that newer teaching methods such as roleplay, group work, and target acquisition are feasible and effective in a palliative research curriculum. Additional studies are needed to confirm the objective outputs of educational interventions, including research outputs.