Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
"Papa, Maman, Faustine, ne vous inquiétez pas pour moi, je n'ai pas peur. Prenez soin de vous. Je vous aime." Ces mots sont ceux d'Emilie. Elle les écrit lorsqu'elle apprend qu'après deux années de combat contre le cancer, plus aucun traitement ne peut prolonger sa vie. A travers ces quelques mots, elle donne une leçon de vie à sa famille et à ses proches : elle fait le choix d'être heureuse pendant le peu de temps qui lui reste à vivre.
Elle souhaite partager son enjouement, son courage et sa force avec ceux qui l'ont toujours aimée et soutenue. Jusqu'où ira-t-elle dans le combat qu'elle mène contre la maladie ? Comment vivra-t-elle ses derniers instants ? Ses proches réussiront-ils à accepter la situation et à surmonter cette douloureuse épreuve ?
This study explored the death narrative in the late Qing dynasty as expressed in Chinese newspapers in the 19th century. Using textual analysis, this study identified three themes regarding death and dying during this period: euphemism of death, definition of “good death,” and Western influence on the death narrative. The study results of death narrative in the 19th century indicate the historical root of perception of death among the current Chinese people, which could help the development of a culturally sensitive hospice services for Chinese people in China and other countries by suggesting language use, patients approaching, and mental health intervention for the service providers and policy makers.
Cette ouvrage présente une réflexion autour du fait de mourir dans un contexte médical comme nouvelle pratique admises par les sociétés occidentales au XXIe siècle. L'auteur s'interroge sur le lien entre cet habitus et le déni global de la mort en Europe et en Amérique du Nord.
This study aims to investigate the relationship between death anxiety of the Turkish nurses and their attitudes toward the dying patient. This study involved 203 nurses who were working at a university hospital. The data were collected using “Nurse Information Form” (which was prepared by the authors of this research), “Thorson-Powell Death Anxiety Scale,” and “Attitude Scale about Euthanasia, Death, and Dying Patient.” There was a positive correlation between death anxiety and dying patient avoidance behavior and euthanasia score (p < .05). The findings showed that nurses, death anxiety, and death scores were high in the loss of a close relatives (p < .05). Our findings suggest that the situation of the dying patients and their families and also nurses should be improved. Thus, special psychological education/training should be given to the nurses to deal with death anxiety and their attitude to the dying patient.
Some of the most ethically challenging and emotionally demanding aspects of nursing occur in caring for patients and their family at the end of life. The aims of this study were to examine the views of acute care nurses caring for patients during transition to comfort care, to describe the personal impact on nurses, and to identify nurses’ strategies for self-support and development of competence. Using a qualitative descriptive approach, we analyzed data from 26 semistructured interviews.
Nurses experienced moral distress in situations of continuing treatment when a cure was unlikely. In managing symptoms for patients, they struggled to foster an often-tenuous balance of patient comfort and calm without oversedation. They struggled to manage the competing demands of a workload including patients receiving curative care juxtaposed with those focused on comfort care. Nurses reflected on their fears as new nurses caring for end-of-life patients, the inadequacy of their preparation for this role, and their distress when the care provided felt inadequate to them.
Nurses navigated challenges through support from nurse colleagues and effective leaders. They appealed to administrators to attend to care concerns arising from time-intensive nature of care. Mentoring and education facilitated assimilation to comfort-care nursing for novice nurses.
Objectives: To explore the influence of hospital and patient characteristics on deaths at home among inpatients facing impending death.
Method: In this historical cohort study, 95,626 inpatients facing impending death from 362 hospitals in 2011 were recruited. The dependent variable was the place of death. The independent variables were the characteristics of the hospitals and the patients. A two-level hierarchical generalized linear model was used.
Results: In total, 41.06% of subjects died at home. The hospital characteristics contributed to 29.25% of the total variation of the place of death. Private hospitals (odds ratio [OR] = 1.32, 95% confidence interval [CI] = 1.00-1.75), patients >65 years old (OR = 1.48, 95% CI. = 1.42-1.54), married (OR = 3.15, 95% CI. = 2.93-3.40) or widowed (OR = 3.39, 95% CI. = 3.12-3.67), from near-poor households (OR = 5.16, 95% CI. = 4.57-5.84), having diabetes mellitus (OR = 1.79, 95% CI. = 1.65-1.94), and living in a subcounty (OR = 2.27, 95% CI. = 2.16-2.38) were all risk factors for a death at home.
Conclusion: Both hospital and patient characteristics have an effect of deaths at home among inpatients facing impending death. The value of the inpatient mortality rate as a major index of hospital accreditation should be interpreted intrinsically with the rate of deaths at home.
PURPOSE: Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical-psychological-social-spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients' inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients' altered awareness of time/space/body and patients' altered social connectedness.
METHOD: Two interdisciplinary teams observed 80 dying patients with cancer in palliative units at 2 Swiss cantonal hospitals. We applied participant observation based on semistructured observation protocols, supplemented by the list of analgesic and psychotropic medication. Descriptive statistical analysis and Interpretative Phenomenological Analysis (IPA) were combined. International interdisciplinary experts supported the analysis.
RESULTS: Most patients showed at least fear and pain once. Many seemed to have spiritual experiences and to undergo a transformation of perception only partly depending on medication. Line graphs representatively illustrate associations between fear/pain/denial/spiritual experiences and a transformation of perception. No trajectory displayed uninterrupted distress. Many patients seemed to die in peace. Previous near-death or spiritual/mystical experiences may facilitate the dying process.
CONCLUSION: Approaching death seems not only characterized by periods of distress but even more by states beyond fear/pain/denial.
Background: Recognising dying is a key clinical skill for doctors, yet there is little training.
Aim: To assess the effectiveness of an online training resource designed to enhance medical students’ ability to recognise dying.
Design: online multicentre double-blind randomised controlled trial (NCT03360812). The training resource for the intervention group was developed from a group of expert palliative care doctors’ weightings of various signs/symptoms to recognise dying. The control group received no training.
Setting/participants: Participants were senior UK medical students. They reviewed 92 patient summaries and provided a probability of death within 72 hours (0% certain survival – 100% certain death) pre, post, and 2 weeks after the training. Primary outcome: (1) Mean Absolute Difference (MAD) score between participants’ and the experts’ scores, immediately post intervention. Secondary outcomes: (2) weight attributed to each factor, (3) learning effect and (4) level of expertise (Cochran–Weiss–Shanteau (CWS)).
Results: Out of 168 participants, 135 completed the trial (80%); 66 received the intervention (49%). After using the training resource, the intervention group had better agreement with the experts in their survival estimates (dMAD = -3.43, 95% CI -0.11 to -0.34, p = <0.001) and weighting of clinical factors. There was no learning effect of the MAD scores at the 2-week time point (dMAD = 1.50, 95% CI -0.87 to 3.86, p = 0.21). At the 2-week time point, the intervention group was statistically more expert in their decision-making versus controls (intervention CWS = 146.04 (SD 140.21), control CWS = 110.75 (SD 104.05); p = 0.01).
Conclusion: The online training resource proved effective in altering the decision-making of medical students to agree more with expert decision-making.
The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.
À quoi pensons-nous quand nos jours sont comptés ? Nos réactions sont-elles différentes selon que nous avons vingt, quarante ou quatre-vingts ans ? Que retenons-nous de la vie à l’approche de nos derniers instants ?
Les auteures ont rencontré des personnes de tous âges, mourantes ou atteintes d’une maladie potentiellement mortelle, pour les écouter, elles et leurs proches, parler de leur expérience et capter en photo une partie de leur essence. L’annonce du diagnostic, les peurs, la réaction des autres, la définition du bonheur : voilà ce dont ont parlé Alexis, 10 ans, qui veille sur sa maman malade ; Patrick, 38 ans, déchiré à l’idée de quitter sa famille ; André, 80 ans, qui a choisi de profiter de chaque instant qu’il lui reste ; et plusieurs autres. De cette démarche résulte un livre infiniment humain, une manifestation d’espoir où toutes les personnes impliquées, à travers une confession généreuse, laissent entrevoir leurs déceptions, mais aussi leurs joies.
Depuis la seconde moitié du XXe siècle, de nombreux sociologues, anthropologues et historiens, ont souligné le fait que la civilisation occidentale se caractérisait par un "déni social de la mort" et qu'elle procédait ainsi à une occultation dramatique des personnes en fin de vie. La mort et le mourir seraient devenus " tabous " et notre culture jeuniste et consumériste nous inciterait à en détourner nos regards.
Vouloir éloigner le tragique, faire décliner l'importance traditionnellement accordée aux rituels funéraires et au deuil, tel serait un des aspects majeurs de notre culture. Les sciences sociales étaient alors accusatrices : elles dénonçaient le " mal mourir " et faisaient la critique d'un monde où le rapport à la mort avait globalement cessé d'être familier. Ce constat exigeait donc un remède : dès les années 80, se sont développés en France les soins palliatifs et de nombreux débats sur la fin de vie ont fait leur apparition dans l'espace public (notamment la question de l'euthanasie et celle du refus de l'acharnement thérapeutique).
Pour autant, avons-nous aujourd'hui réussi à modifier notre rapport au mourir, à "resocialiser la mort" et à mieux accompagner les personnes en fin de vie ? Avons-nous trouvé les moyens d'enrayer le processus d'occultation de la mort dont beaucoup pensent qu'il est inévitablement pathologique ?
Hospitals remain the most common location of death in a significant number of countries, and specialist palliative care is positioned as a crucial resource for improving hospital care for those nearing end of life. Little is known, however, about a substantive aspect of this work: how hospital palliative clinicians anticipate and organize a patient's dying trajectory. In this paper I draw from a larger original ethnographic research study of palliative specialists in two Canadian hospitals. Abductive analysis resulted in framing their work as affective labour, both reflecting and re-creating a larger affective economy shaping the affective states of everyone involved in the provision and uptake of care. I articulate six analytically ideal outcomes of clinicians' affective labour that organize end of life, including: 1) proactive co-authorship of disease trajectory; 2) mutual acknowledgement of a dying trajectory; 3) naturalizing direction and outcome of care, 4) ensuring a minimum of social disruption, 5) identification as compassionate and efficient care providers, and 6) increased specialist knowledge and interventions. In so doing, clinicians' practices become understandable as labour to meet a diversity of - at times conflicting - individual, organizational, and societal mandates that necessarily include, but extend well beyond, the patient and her immediate social network. This is the first study to consider hospital palliative care as an affective economy, and presents a theoretically innovative and empirically grounded model to advance new ways of conceptualizing hospital palliative care. I conclude by considering how this model, and the unique insights it affords, can inform the future development of end of life care in hospital settings.
Recent years have seen a recognition of the importance of talking openly to patients at the end of life about death and dying. This article aims to add to the existing body of literature on this subject. Conversations at the end of life can be difficult, particularly if the patient is experiencing mental distress alongside their terminal illness. A number of factors can disrupt a constructive and supportive conversation around death and dying. This article offers a frame of reference for nurses to consider when having such conversations.
BACKGROUND: Undergraduate teaching currently fails to adequately prepare doctors to deliver 'end-of-life' care. Despite much evidence supporting simulation-based teaching, its use in medical undergraduate palliative and 'end-of-life' care curricula remain low.
AIM: This study assesses whether simulation can improve the confidence and preparedness of medical students to provide holistic care to dying patients and their families, from clinical assessment to symptom management, communication and care after death.
METHODS: Six fourth-year medical students undertook individual simulations involving a dying patient (high-fidelity simulator) and family member (actor). Intentional patient death occurred in four of the six scenarios (although unexpected by students). Pre-simulation/post-simulation thanatophobia questionnaires measured student attitudes towards providing care to dying patients. Thematic analysis of post-simulation focus group transcripts generated qualitative data regarding student preparedness, confidence and value of the simulations.
RESULTS: Thematic analysis revealed that students felt the simulations were realistic, and left them better prepared to care for dying patients. Students coveted the 'safe' exposure to dying patient scenarios afforded by the simulations. Observed post-simulation reduction in mean thanatophobia scores was not found to be statistically significant (p=0.07).
CONCLUSIONS: Results suggest a feasible potential for simulations to influence undergraduate medical student teaching on the care of a dying patient and their family. We believe that this study adds to the limited body of literature exploring the value of simulation in improving the confidence and preparedness of medical students to provide 'end-of-life' care. Further research into the cost-effectiveness of simulation is required to further support its application in this setting.
OBJECTIVES: At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness.
METHODS: A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected.
RESULTS: 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48–25 hours before death.
CONCLUSIONS: Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48–25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.
Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family’s experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver’s previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines.
CONTEXT: There is no clear definition of what constitutes a good death or its features. Patients, caregivers, physicians and relatives have different notions of a good death. Discussions have been driven by academic perspectives, with little research available on the patients' perspectives.
OBJECTIVES: To explore the notions of a good death from the patients' perspective.
METHODS: A systematic literature search was conducted up to November 2017 using Cinahl®, MEDLINE®, EMBASE®, and PsychoINFO® databases. Search terms used were 'quality of death', 'good death', 'quality of dying' or 'good dying'. Scientific empirical studies that included the exploration of the notion of a good death in adult patients with advanced and life-threatening diseases were selected separately by 2 researchers. Hawker´s et al. criteria were used to assess the quality of articles. The analysis was conducted using a thematic analysis.
RESULTS: 2652 titles were identified; after elimination of duplicates, screening and final selection, 29 relevant publications remained for analysis. Sample populations included patients with terminal diseases (AIDS, cardiovascular disease, and cancer). Core elements for a "good death" included control of pain and symptoms, clear decision-making, feeling of closure, being seen and perceived as a person, preparation for death, and being still able to give something to others; while other factors such as culture, financial issues, religion, disease, age, and life circumstances were found to shape the concept across groups. Studies agree on the individuality of death and dying while revealing a diverse set of preferences, regarding not only particular attributes but also specific ways in which they contribute to a good death.
CONCLUSIONS: Although sharing common core elements, patient´s notions of good death are individual, unique and different. They are dynamic in nature, fluctuating within particular groups and during the actual process of dying. Formal and informal caregivers should carefully follow-up and respect the patient´s individual concepts and preferences regarding death and dying, while attending to shared core elements, to better adjust clinical decisions.
Though the dying process may offer an opportunity for truth telling and atonement, reconciliation and expressions of love, it may also allow a space for life to go on just as it was. If we’re lucky, we’ll continue to live as we always did until the very end.