Dans cette réflexion sur les soins palliatifs, nous pointons la parole médicale comme structurellement traumatique.
Fréquemment, elle bloque le sujet à l’Éternel présent et rend difficile la projection vers l’à-venir.
Nous avançons ici l’idée que l’accompagnement palliatif aide à se dégager de ce traumatisme. Nous distinguerons deux positions relationnelles différentes dans le rapport au patient, positions qui occasionnent des modalités distinctes de maniement de la parole...
L'ouvrage aborde des problèmes majeurs de l'éthique médicale actuelle. Il constate que dans le cadre de la santé, pour régler les conflits, on a besoin de recourir à une diplomatie : respectueuse de la loi, l'éthique ne se réfère pas, comme les morales et les religions, à des valeurs transcendantes. S'appuyant sur divers exemples - le sang, les machines - l'auteur montre comment l'éthique médicale affronte des situations dans lesquelles la rationalité ne peut que composer avec des éléments d'ordre symbolique.
Sont abordés également quelques problèmes posés par la robotique et l'informatique : loin de les proscrire, on cherche à leur trouver une juste place à l'intérieur d'un nouvel humanisme.
Cadavre : corps mort, tout être vivant est destiné à le devenir. Est-ce pour autant la fin de la vie ? Non, si c'était le cas nous ne laisserions pas une chose inerte après notre passage sur Terre. Cette chose incapable de s'exprimer a pourtant tant à raconter : un deuil, un héritage, un souvenir oublié, un revenant, une valeur chiffrable... En voici treize de leurs histoires, à ces cadavres si bavards !
This study explored the experience of pharmacists, social workers, and nurses who participated in Medical Assistance in Dying (MAiD) in a tertiary care Canadian hospital. Consenting staff participated in qualitative semistructured interviews, which were then analyzed for thematic content. This article reports on the broad theme of “support” from the perspective of the 3 professions, focusing on the diversity in perceptions of support, how MAiD was discussed within health care teams, feelings of gratuitous or excessive gestures of support, ambivalence over debriefs, and the importance of informal support. While pharmacists and social workers generally felt part of a community that supported MAiD, nurses more often expressed opinions as highly divergent. The key finding across all themes was the central importance of the culture on any unit with respect to MAiD and specifically the role of the unit manager in creating either a positive open space for communication or a more silent or closed space. Nursing noted that in the latter setting many gestures of support were experienced as insincere and counterproductive, as were debriefs. We outline several recommendations for managers based on the study results with the intent of tailoring support for all professionals involved in MAiD.
The COMFORT Model has recently been revised based on feedback from bedside nurses working in palliative care and oncology and includes the following components: Connect, Options, Making Meaning, Family Caregiver, Openings, Relating, and Team. Based on clinical and nonclinical research in hospital, hospice, palliative care, and interdisciplinary education settings, the authors present the updated COMFORT Model. Originally introduced in 2012 to support the work of the nurse, the model is not a linear guide, an algorithm, a protocol, or a rubric for sequential implementation by nurses, but rather a set of communication principles that are practiced concurrently and reflectively during patient/family care. In its restructuring, we focus on the role of health literacy throughout the COMFORT components in relationship to the health literacy attributes of a health care organization. A brief summary of COMFORT components is provided and includes strategies and competencies contributing to a health-literate care organization. Both health literacy and COMFORT are explored using specific communication challenges that underscore the role of the nurse in accomplishing person-centered and culturally responsive care, especially in chronic and terminal illness. The integration of the COMFORT Model into nursing education is proposed.
Hospice volunteers are a high-risk group for anxiety and depression owing to their frequent exposure to patients at the end of life and their subsequent deaths. Resilience is known to be a powerful factor that affects the occurrence of anxiety and depression; however, research on this subject is scarce. We investigated the relationship of resilience with anxiety or depression in hospice volunteers. A total of 145 volunteers were included in the analysis. Participants completed self-reported scales, including the Korean version of the Connor-Davidson Resilience Scale, the State-Trait Anxiety Inventory, Patient Health Questionnaire-9, and the Professional Quality of Life Scale version 5. Pearson correlation coefficients were analyzed to identify the relationship of compassion satisfaction and compassion fatigue with anxiety or depression. A PROCESS macro mediation analysis was used to investigate the mediation effects of compassion satisfaction and compassion fatigue on the relationship between resilience and anxiety or depression. There were significant associations of compassion satisfaction and compassion fatigue with anxiety and depression. The relationship between resilience and anxiety/depression was mediated by compassion fatigue, which had indirect effects on anxiety and depression. Efforts to reduce compassion fatigue and increase resilience could help prevent anxiety and depression in hospice volunteers.
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally mandated option for children and their families, no review of the science has been conducted. The purpose of this study was to systematically collect the evidence on concurrent hospice care, critically appraise the evidence, and identify areas for future nursing research. Of the 186 articles identified for review, 14 met the inclusion and exclusion criteria. Studies in this review described concurrent hospice care from a variety of perspectives: policy, legal, and ethics. However, only 1 article evaluated the impact of concurrent hospice care on outcomes, whereas several studies explained clinical and state-level implementation. There is a need for further studies that move beyond conceptualization and generate baseline and outcomes data. Understanding the effectiveness of concurrent hospice care might provide important information for future nursing research. The approaches used to disseminate and implement concurrent hospice care at state, provider, and family levels should be explored.
This study aimed to identify the relationships of perception of hospice and palliative care with emotional intelligence and cognitive empathy in nursing students. The participants were 458 nursing students. Data were collected using structured questionnaires and analyzed with Pearson correlation coefficients, independent-samples t test, and binary logistic regression. Perception of hospice and palliative care was significantly and positively correlated with emotional intelligence (r = 0.224, P < .001) and cognitive empathy (r = 0.311, P < .001). Mean score differences of perception of hospice and palliative care by emotional intelligence and cognitive empathy were statistically significant (t = -3.973, P < .001; t = -4.109, P < .001, respectively). Logistic regression yielded an odds ratio of 1.860 (P < .001; 95% confidence interval, 1.283-2.698) between the perception of hospice and palliative care and emotional intelligence and an odds ratio of 2.028 (P < .001; 95% confidence interval, 1.394–2.951) between the perception of hospice and palliative care and cognitive empathy. Emotional intelligence and cognitive empathy should be cultivated to raise nursing students' perception of hospice and palliative care and must be included when developing related curricula and extracurricular programs.
Nurses spend more time with seriously and terminally ill patients across the continuum of care than other health professionals, yet nursing students lack adequate palliative care education and experience when they transition to practice. In response to the American Association of Colleges of Nursing CARES competencies for enhanced preparation in palliative care, the End-of-Life Nursing Education Consortium developed modules for undergraduate programs. Nursing students' life experiences and their prior involvement with death and dying situations shape their potential achievement of end-of-life learning outcomes. The purpose of this study was to explore traditional and nontraditional students' perspectives and outcomes of their lived experiences in response to the End-of-Life Nursing Education Consortium modules and current palliative care program curriculum. Following university institutional review board approval, the phenomenological qualitative study included 2 focus groups of traditional and transfer students. Thematic data analysis revealed 4 primary themes with differences noted between groups in response to these themes: (1) witnessing suffering and death, (2) building courage and competence, (3) conversation challenges, and (4) curriculum issues and recommendations. Implications for future palliative care education indicate opportunities to better support students through expanded simulations and debriefing sessions, integrated roles for clinical faculty and preceptors, and interdisciplinary team collaboration opportunities across settings.
A growing population of persons with a serious illness will place higher demands on health care professionals to provide the palliative care needed. A Palliative Care Advanced Practice Registered Nurse (APRN) Externship was developed and implemented as a novel way to increase access to palliative care with the potential to be replicated in multiple locations. Two APRN cohorts with a total of 10 APRNs participated in a 1-week educational program, including both classroom and clinical experiences, in 1 such site. The effectiveness of the program was evaluated by participants through an electronic survey and debriefings. Active learning experiences included role play, case studies, and clinical observation and were rated as highly valuable by participants. An important theme concerning the validation of current practice was identified. Future externship programs should be refined by incorporating participant feedback and continuing to use a variety of techniques to engage learners with diverse learning styles.
Caring for persons at the end of life has dramatically changed in the last 20 years. Improved chronic illness management and aggressive life-sustaining measures for once-fatal illnesses have significantly increased longevity. People with life-limiting illnesses and their families are asked to make complex and difficult decisions about end-of-life, palliative, and hospice care. The purpose of this study was to discover and describe the culture care expressions, patterns, and practices influencing rural Appalachian families making decisions at the end of life. The qualitative, ethnonursing research method was used to analyze data from 25 interviews. The 4 themes discovered provide insights that could help improve this underserved population's access to palliative and hospice care, which in turn could help them experience a dignified death. Recommendations for health care providers could help reduce rural Appalachians' health disparities and promote meaningful, culturally congruent end-of-life care.
It is an international consensus that health care workers should be well trained to promote care for seriously ill and dying patients. Nursing students have reported that they feel inadequately prepared for palliative care. Simulation exercises have been described as increasing knowledge, skills, and competence, and participants have reported that they are more confident and prepared for palliative care with this learning approach than without. So far, there has not been much reported on how simulation contributes to learning in clinical practice. Therefore, this study explored whether learning outcomes from palliative care simulation further developed in practice. Second-year bachelor's-prepared nursing students voluntarily participated in a simulation activity as part of their hospital practice. Eleven students were interviewed about their learning experiences. The findings indicate that a prerequisite for further learning was to actively choose palliative care. Relationships with nurses, patients, and relatives and factors in themselves served as gatekeepers for attending learning situations. Becoming a nurse who can provide palliative care was described as an emotionally challenging experience. Elements that promoted learning outcomes in palliative care were simulation experience, clarified expectations, support, and a good dialog with the nurse before and after the learning situation.
Although there is an increased need for delivery of bereavement care, many health care providers in acute care hospital settings feel inadequately prepared to deliver quality grief support, have lack of time, and have inexperience in provision of bereavement care. As a result, although families would like health care providers to offer bereavement support, they are inadequately trained and susceptible to burnout, resulting in families not having their needs met. The purpose of this qualitative study was to uncover the social process occurring in a bereavement education workshop titled "How to Care, What to Say" offered to health care providers. The goal of the workshop was to improve delivery of care for the dying and their family by providing holistic care to the family before, during, and after the death of a loved one. Past grief workshop participants who cared for the bereaved were interviewed, and data were analyzed and synthesized using constructivist grounded theory. Individual interviews and focus group data revealed participants' perceptions, learnings, and potential integration of the workshop into practice. The overarching theory of providing bereavement care that emerged from the data is "a relational process of understanding knowledge, self-awareness, moral responsibilities, and advancing grief competencies of providing holistic grief support."
Dans l’histoire de notre société, les progrès de la médecine, sur fond de paternalisme hippocratique, conduisent à des avancées considérables comme à des expérimentations de l’homme sur l’homme. Après le code de Nuremberg en 1947, l’autonomie s’impose. Le profane, en particulier le patient, revendique sa place au sein de la décision médicale. En découlent des conflits de valeurs entre acharnement thérapeutique et euthanasie. L’auteur explore ici la démarche éthique clinique menée en unité de soins palliatifs qui tente de répondre à certaines situations complexes en fin de vie. Par une approche sociologique et une introduction à la recherche, nous croisons le vécu de huit acteurs. L’un des points forts qui ressort est une dysrythmie temporelle, entre unicité et routine, temps et durée, que la démarche éthique tente de synchroniser.
BACKGROUND: Safeguarding the dignity of patients at the end of life is a key objective in palliative care practice in Denmark. The concept of dignity and how it influences a dying persons' quality of life is thus influential in end-of-life care at hospices. However, what is meant by dignity, how dignity is understood and practiced by healthcare professionals in Danish hospices, and whether this relates to the patients' understandings and needs concerning dignity remains unanswered.
AIM: The aim of this study was to explore and improve dignity in care through an action research study with patients and hospice staff at two different hospices in Denmark. This was done by exploring how patients and healthcare professionals expressed their understandings and needs concerning dignity and involving participants in the research process with the goal of improving dignity in care.
METHODS: An action research method with reflection-of-praxis and action-in-praxis was applied. It was combined with methods of semi-structured individual interviews with twelve patients, five staff and nine focus-group interviews with staff.
RESULTS: Three themes emerged from the analysis of data. The themes were as follows: (1) being understood, (2) contributing and (3) holistic care. Deeper analysis indicated that staff understandings of dignity mostly focused on preserving patients' autonomy, whereas patients expressed needs for relational and spiritual aspects of dignity. Staff were mostly concerned about preserving patients' autonomy when providing dignity in care, however, through the action-in-praxis they increased their awareness on their own praxis and patients' needs and understanding concerning dignity. The theoretical model on dignity presented in the study also worked as a map to guide staffs' reflections on dignity in praxis and facilitated a broader focus on supporting and caring for patients' dignity in care. We believe this study has improved dignity in care at the two hospices involved in the study.
Introduction : En France, plus de 618 000 résidents vivent en Établissement pour personnes âgées dépendantes (EHPAD) et plus de 125 000 y décèdent chaque année. Les difficultés éthiques y sont accrues en raison de la polypathologie et des troubles cognitifs. Les prises en charge des résidents en fin de vie ont été l’objet de recommandations de bonnes pratiques. Pourtant, les modalités de mise en oeuvre des soins palliatifs en EHPAD restent peu étudiées.
Objectifs : L’objectif était d’évaluer les pratiques de soins palliatifs en EHPAD.
Méthodes : Quatre Équipes mobiles de soins palliatifs (EMSP) et le Réseau qualité des établissements de santé de Bourgogne-Franche-Comté (REQUA) ont proposé un audit rétrospectif de dossiers dans le cadre d’une Évaluation des pratiques professionnelles (EPP) à 11 EHPAD volontaires de leur région.
Résultats : Dans ces établissements (1 596 places au total), 475 décès étaient survenus l’année précédant le recueil. Un échantillon de 295 dossiers était audité. Dans 91 % des cas les décès étaient survenus au sein des établissements. Parmi les 221 résidents décédés de façon non soudaine, lors de la dernière semaine de vie, 63 % avaient eu au moins une évaluation de la douleur, 47 % une contention (y compris barrières) et 36 % une hydratation artificielle. Dix pour cents des dossiers comportaient la trace d’une information des résidents à propos de leur état de santé. Conclusion : Ce travail identifie des axes d’amélioration des pratiques portant sur la prise en charge des douleurs, l’implication des résidents dans leur propre projet de fin de vie, et la nécessité d’une valorisation institutionnelle de l’interdisciplinarité.
BACKGROUND: Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies.
AIM: To review the quantitative and qualitative evidence on the effectiveness and impact of interventions and services providing support for adults bereaved through advanced illness.
DESIGN: A mixed-methods systematic review was conducted, with narrative synthesis of quantitative results and thematic synthesis of qualitative results. The review protocol is published in PROSPERO ( www.crd.york.ac.uk/prospero , CRD42016043530).
DATA SOURCES: The databases MEDLINE, Embase, PsycINFO, CINAHL and Social Policy and Practice were searched from 1990 to March 2019. Studies were included which reported evaluation results of bereavement interventions, following screening by two independent researchers. Study quality was assessed using GATE checklists.
RESULTS: A total of 31 studies were included, reporting on bereavement support groups, psychological and counselling interventions and a mix of other forms of support. Improvements in study outcomes were commonly reported, but the quality of the quantitative evidence was generally poor or mixed. Three main impacts were identified in the qualitative evidence, which also varied in quality: 'loss and grief resolution', 'sense of mastery and moving ahead' and 'social support'.
CONCLUSION: Conclusions on effectiveness are limited by small sample sizes and heterogeneity in study populations, models of care and outcomes. The qualitative evidence suggests several cross-cutting benefits and helps explain the impact mechanisms and contextual factors that are integral to the support.
In the partnership between the medical departments of Würzburg University, Germany, and Nagasaki University, Japan, palliative care is a relevant topic. The aim of the study was to perform a comparative analysis of the hospital-based palliative care teams in Würzburg (PCT-W) and Nagasaki (PCT-N). Survey of staff composition and retrospective analysis of PCT patient charts in both PCTs were conducted. Patients self-assessed their symptoms in PCT-W and in Radiation Oncology Würzburg (RO-W). The (negative) quality indicator 'percentage of deceased hospitalised patients with PCT contact for less than 3 days before death' (Earle in Int J Qual Health Care 17(6):505-509, 2005) was analysed. Both PCTs follow a multidisciplinary team approach. PCT-N saw 410 cancer patients versus 853 patients for PCT-W (22.8% non-cancer patients). The Eastern Cooperative Oncology Group Performance Status at first contact with PCT-N was 3 or 4 in 39.3% of patients versus 79.0% for PCT-W. PCT-N was engaged in co-management longer than PCT-W (mean 20.7 days, range 1-102 versus mean 4.9 days, range 1-48). The most frequent patient-reported psychological symptom was anxiety (family anxiety: 98.3% PCT-W and 88.7% RO-W, anxiety 97.9% PCT-W and 85.9% RO-W), followed by depression (98.2% PCT-W and 80.3% RO-W). In 14 of the 148 deceased patients, PCT-N contact was initiated less than 3 days before death (9.4%) versus 121 of the 729 deceased PCT-W patients (16.6%). Psychological needs are highly relevant in both Germany and Japan, with more than 85% anxiety and depression in patients in the Japanese IPOS validation study (Sakurai in Jpn J Clin Oncol 49(3):257-262, 2019). This should be taken into account when implementing PCTs.
Elisabeth Kübler-Ross' seminal 1969 work, On Death and Dying, opened the door to understanding individuals' emotional experiences with serious illness and dying. Patient's emotions, however, are only half the story in the patient-physician relationship. In recent years physicians' emotional reactions have gotten more attention. These sometimes-unacknowledged emotions influence how we approach our work, including life and death decisions. This article reviews some of the main emotions physicians experience when caring for seriously ill and dying patients and the challenges physicians face in regulating their emotions in a professional setting. We also discuss some of the ways that physician emotion may influence medical decision-making and contribute to conflict. Attention to the emotional level of physician experience may promote better care.
Background: Advance directives towards end of life decisions are seldom used among Arabs.
Aims: This study aimed at investigating advance care preferences among a sample of Arab patients.
Method: This cross-sectional study was undertaken over the period March 2012-March 2013 on a sample of 300 patients with chronic illness in King Fahad National Guard Hospital, Riyadh, a major tertiary care hospital in Saudi Arabia.
Results: Mean age of patients in the study was 48.7 years (standard deviation 16.4). There were 104 patients on haemodialysis, 73 with advanced malignancy, 81 with chronic liver disease and 35 with chronic respiratory disease. More than 80% of the respondents felt that the physician should make the decision about cardiopulmonary resuscitation. Over 60% wished to remain at home when their condition deteriorated to impending death. There were no significant correlations between the patients' end of life decision preferences and religiosity, quality of life, disease duration, or other demographic characteristics.
Conclusion: Despite a significant lack of knowledge among our participants regarding resuscitation, a majority of patients with chronic illness were willing to discuss the options and were capable of making advance directive plans regarding their health status.