Les nouvelles législations en matière de fin de vie que ce soit en France ou en Belgique placent les soignants en dehors de leurs repères habituels, dans ce que les auteurs nomment une expérience de la transgression. Ces derniers reviennent sur le vécu des équipes dans ce type de situations.
The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.
This study investigates medical trainees' experiences with dying and death, by means of semistructured interviews. Nine medical students and nine residents reported a total of 114 experiences. The great majority of these experiences took place during the final year of medical school. The authors identified the latent characteristics, which illustrate an in-depth understanding of the significance of the described experiences. Three main themes emerged: circumstances of death, personal relationship, and one's own role. The age of the dying person, the extent of suffering, time frame and setting, and the patients' behaviors were factors that influence the perceptions of the experiences. The interviewees reported powerful emotional consternation by the patients' deaths with whom they had developed a close relationship. Failure, helplessness, and guilt were negatively associated perceptions of one's own role. This study illustrates the tension between emotional concern and professional detachment. It highlights the continuing existence of a physician image, in which control represents the key issue.
INTRODUCTION: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers.
METHODS: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases.
RESULTS: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills.
CONCLUSION: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC's transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.
BACKGROUND: Dependence is a common life experience and innate condition for human beings due to their bodily and relational essence, but in contemporary society, it has become a stressful condition. Care dependence is central to nursing, and patients with advanced cancer are often dependent on care. Understanding nurses' perceptions of care dependence can contribute to awareness of the impact it has on nurses.
OBJECTIVE: The aim of this study was to explore palliative care nurses' experiences and perceptions regarding patient dependence.
METHODS: Sixteen nurses taking care of dependent patients in a palliative care center in Rome were interviewed. Giorgi's descriptive phenomenological method was used.
RESULTS: Nurses caring for dependent patients transcend the boundaries of dependence. Care dependence is an experience of powerlessness and regression. A patient's life in dependence is precarious, as they have to overcome the daily limits of life. Taking care of dependent patients requires nurses to manage the unmanageable and to know and to embrace change from within in order to build positive relations of personal closeness and reciprocal self-giving.
CONCLUSIONS: Nurses should be aware that self-transcendence and the consequent positive relations could make the difference in the experience of care dependence and promote personal growth for both patient and nurse. Positive and transcending relationships can transform care dependence into the opportunity to find meaning and purpose in life.
IMPLICATIONS FOR PRACTICE: The study highlights what nurses feel in caring for dependent patients. Understanding nurses' perceptions is important to delineate a proper caring for dependent patients.
OBJECTIVES: The purpose of this study was to provide a comprehensive exploration of nurses' meaningful experiences of providing end-of-life care to patients and families in the intensive care unit (ICU). The objectives of this research were: (1) To explore what is meaningful practice for nurses regarding end-of-life care; (2) To describe how nurses create a good death in the intensive care unit and (3) To identify the challenges that nurses face that affect their meaningful experiences and ultimately the creation of a good death.
RESEARCH DESIGN: This study utilised an interpretive phenomenological approach using Van Manen's (1997) method.
SETTING: In-depth, face-to-face interviews were conducted with six intensive care nurses employed in a 32-bed medical/surgical intensive care unit of an academic tertiary care centre in Canada.
FINDINGS: The overarching theme from the analysis of this experience was "being able to make a difference" which was intricately woven around contributing to a good death. Three main themes were identified and included: creating a good death, navigating the challenges and making it work.
CONCLUSION: The findings reveal how intensive care nurses provide good end-of-life care and create good deaths for patients and families.
The diagnosis of cancer for anyone is a time of fear and uncertainty. For young adults (YAs) diagnosed with acute leukemia (AL), there are the additional challenges related to lengthy aggressive in-hospital treatment, multiple concurrent symptoms, and decreased well-being. The purpose of this study was to explore the experiences of YAs with AL undergoing induction chemotherapy. This study used a nested qualitative longitudinal design with a convenience sample. Qualitative data were collected using semistructured interviews, and participants were invited to maintain journals. The semistructured interviews were audiotaped, transcribed, and loaded into Atlas.ti for analysis. Common themes and categories were verified and used to disseminate the findings. Seven YAs, mean age 32 (SD, 4) years, participated in this study. Three thematic classifications emerged: getting through, supported yet isolated, and information exchange preferences, which detail how these YAs processed and coped during treatment. The findings from this study provide important insights for nurses regarding coping mechanisms that YAs apply, which included relying on technology and social media platforms. Additionally, the YAs in this study discussed their need for information. The findings from this study may provide insights for clinicians currently caring for YAs with AL, while also directing future palliative care research endeavors.
Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.
La loi Leonetti du 22 avril 2005 a posé un cadre législatif définissant l’obstination déraisonnable, que l’on nommait précédemment l’acharnement thérapeutique. La décision de ce qui est raisonnable ou non dans la mise en place ou la poursuite de traitements soit curatifs soit de maintien artificiel de la vie renvoie à une question éthique sur la fin de vie. C’est en interrogeant cette éthique de fin de vie que l’aide-soignante peut parvenir à vivre au mieux toute décision médicale en lien avec une problématique d’obstination déraisonnable.
Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient's psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children's needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children's experiences when a parent has a life-limiting illness by exploring bereaved children's experiences of the support they received when their parent had a life-limiting illness, and professionals' perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations.
Advance care planning has been shown to improve patient outcomes and is recommended as part of routine care for people with a life-limiting illness. Nevertheless, developing an advance care plan can be complex and challenging for both patients and family members, and the clinicians who support them. One complexity is that illness and its treatments often cannot be deeply understood without lived experience. In this paper, we explore this idea, highlighting how lived experience can bring about unpredictable changes in an individual's values and preferences. We examine the implications of such 'transformative experiences' for advance care planning, using the hypothetical case study of Jean, an older person with advanced kidney disease. Finally, we consider consequences for clinical practice and how an understanding of transformative experience might enhance current approaches to advance care planning.
BACKGROUND: The use of complementary therapy has become increasingly integrated into specialist palliative care units (SPCUs).
OBJECTIVE: To evaluate patients' interest in and experience of complementary therapies during their inpatient stay in a SPCU.
METHOD: All 179 patients admitted to the SPCU over a 3-month period were assessed on admission. Those deemed suitable to participate by the researcher/clinical nurse specialist were invited to participate in this research. A standardised paper questionnaire was completed by the participating patients.
RESULTS: 71 patients (40%) completed the study. Those excluded had cognitive impairment, fatigue, communication difficulties or were imminently dying. Some declined to participate. A variety of age groups and diagnoses were represented. Only 27% of participants had a previous experience of using complementary therapies in the past 12 months. The majority (52%) were 'very interested' in receiving complementary therapy, while 13% reported having 'no interest'. Massage and reflexology were identified as the most popular forms of complementary therapy. The primary anticipated benefits associated with complementary therapy were relaxation and improvement in general wellbeing.
CONCLUSION: This research has indicated a high level of interest in complementary therapies in the study population, across a wide age range regardless of diagnosis or level of disease.
While feelings of disgust and repulsion are experienced and accepted as part of care practices of nurses who work in palliative care, they are often silenced. Working alongside two palliative care nurses in a hospice setting, we engaged in a narrative inquiry to inquire into their experiences of disgust. The study took place in a palliative care setting in a large urban city in Germany. We understand care practices as actions that follow a logic of care. According to a logic of care, actions are situated within a social context, given by specific relationships including power, and individual needs. Various aspects of disgust are visible in the experiences of the participants and highlighted in the narrative threads of disgust and silence, disgust and protection, and disgust and boundaries. Embedded in the experience of disgust of nurses working in palliative care, we see that there are borderlands of care that challenge who we are and are becoming. Opening discussion about disgust in nursing makes visible the complexity of care.
The experiences of end-of-life care by nurses in the pediatric intensive care unit are the subject of this systematic review. Six qualitative articles from three different countries were chosen for the review using methods from Joanna Briggs Institute. The themes discovered included the following: insufficient communication, emotional burden, moral distress from medical futility, strengthening resilience, and taking steps toward hospice. These themes are discussed in detail followed by recommendations for practice to assist nurses in their quest for a good death for their pediatric patients.
Purpose: Patients with haematological malignancies are more likely to die in hospital, and less likely to access palliative care than people with other cancers, though the reasons for this are not well understood. The purpose of our study was to explore haematology nurses' perspectives of their patients’ places of care and death.
Method: Qualitative description, based on thematic content analysis. Eight haematology nurses working in secondary and tertiary hospital settings were purposively selected and interviewed. Transcriptions were coded and analysed for themes using a mainly inductive, cross-comparative approach.
Results: Five inter-related factors were identified as contributing to the likelihood of patients’ receiving end of life care/dying in hospital: the complex nature of haematological diseases and their treatment; close clinician-patient bonds; delays to end of life discussions; lack of integration between haematology and palliative care services; and barriers to death at home.
Conclusions: Hospital death is often determined by the characteristics of the cancer and type of treatment. Prognostication is complex across subtypes and hospital death perceived as unavoidable, and sometimes the preferred option. Earlier, frank conversations that focus on realistic outcomes, closer integration of palliative care and haematology services, better communication across the secondary/primary care interface, and an increase in out-of-hours nursing support could improve end of life care and facilitate death at home or in hospice, when preferred.
Objectifs: Dans le cadre de la loi Claeys-Leonetti, les proches de patients mis sous sédation profonde et continue jusqu’au décès ont pu, au cours de l’expérience de l’auteur en unité de soins palliatifs, évoquer des préoccupations intenses qui les ont poussé parfois à demander « d’accélérer les choses ». L’objectif de ce travail était de trouver des réponses aux questions suivantes : l’accompagnement des proches de patients sédatés a-t-il des particularités ? Des études ont-elles été menées sur ce sujet ? Que proposent-elles ?
Méthodes: N’ayant trouvé aucune étude française sur le vécu des proches, ni leur accompagnement pendant la sédation profonde et continue jusqu’au décès, une revue de la littérature internationale a été réalisée sur 11 études dont les résultats ont été publiés de 2004 à 2016.
Résultats: La sédation peut entraîner chez les proches des émotions négatives pouvant jusqu’à la détresse émotionnelle. Elles sont liées à des préoccupations concernant le bien-être du patient (diminution insuffisante des symptômes, sentiment de diminuer le temps de vie, etc.) et le bien-être des proches eux-mêmes (incapacité à communiquer, épuisement, privation de sommeil, confrontation à l’altération physique, mauvaise préparation aux changements, etc.). Elles augmentent avec la durée de la sédation, pouvant entraîner le désir de hâter la mort. Le besoin d’information, d’implication dans la décision, de dire au revoir, de participer aux soins et de soutien sont identifiés. Leur non-satisfaction entraîne également des souffrances.
Conclusion: Alors que la sédation véhicule l’illusion de tranquillité, le vide et les difficultés qu’elle entraîne nécessitent un accompagnement de qualité. Une formation des professionnels de santé sur les besoins des familles ainsi qu’à la pratique de la sédation semble indispensable.
The aim of this study was to gain an understanding of the experiences of extended longevity as perceived by centenarians. Centenarians (people over 100 years of age) are the fastest growing group of the ageing population in developed countries. Ten centenarians aged between 100 and 106 years, living in the Lower North Island of New Zealand, participated in the study. The biographical narrative interpretive method of inquiry guided data collection through face-to-face interviews, and thematic analysis was subsequently undertaken. Four themes were identified: (a) ‘becoming a centenarian: ‘Just another day’; (b) ‘growing up in a privileged environment’ that revealed four sub-themes: ‘having freedom and choice’, ‘being loved and nurtured’, ‘living healthy lifestyles’ and having ‘good education prospects’; (c) ‘unique opportunities in adult life’; and (d) ‘positive ageing and celebration of longevity’. The centenarians spoke nonchalantly about their experience of turning 100 and positive personalities were prominent features of the participants, who all expressed a sense of acceptance and satisfaction with life and contentment with living in the present, a feature throughout their lives that was ongoing and at an intergenerational level. This study has provided further insights into the existing literature on longevity and through the narratives of the centenarians has demonstrated the value of Erikson's psycho-social stages of development and Tornstam's theory of gerotranscendence when considering positive ageing.
Donation before circulatory death for imminently dying patients has been proposed to address organ scarcity and harms of non-donation. To characterize stakeholder attitudes about organ recovery before circulatory death we conducted semi-structured interviews with family members (N=15) who had experienced a loved one's unsuccessful donation after circulatory death and focus groups with professional stakeholders (surgeons, anesthesiologists, critical care specialists, palliative care specialists, organ procurement personnel, and policymakers, N=46). We then used qualitative content analysis to characterize these perspectives. Professional stakeholders believed that donation of all organs before circulatory death was unacceptable, morally repulsive, and equivalent to murder; consent for such a procedure would be impermissible. Respondents feared the social costs related to recovery before death were too high. Although beliefs about recovery of all organs were widely shared, some professional stakeholders could accommodate removal of a single kidney before circulatory death. In contrast, family members were typically accepting of donation before circulatory death for a single kidney, and many believed recovery of all organs was permissible because they believed the cause of death was the donor's injury, not organ procurement. These findings suggest that definitions of death and precise rules around organ donation are critical for professional stakeholders, while donor families find less relevance in these constructs for determining the acceptability of organ donation. Donation of a single kidney before circulatory death warrants future exploration.
Introduction : La HAS a créé en 2016 un document d'information et d'aide à la rédaction des directives anticipées. L'objectif était de répondre au manque de rédaction des directives anticipées depuis 2005, en lien avec un défaut d'information sur le dispositif. L'objet de notre étude était d'explorer les opinions et perceptions des médecins généralistes (MG) sur ce nouveau document, et comment ils pourraient l'intégrer dans leur pratique en soins primaires.
Méthodes : Étude qualitative par entretiens individuels semi-directifs réalisée auprès de 9 MG après échantillonnage raisonné et conduits jusqu'à saturation du recueil de données. Analyse thématique manuelle avec double codage croisé, dans une perspective phénoménologique. Résultats : Les MG jugent les documents pertinents, complets, mais complexes pour certains patients. Le manque de temps et la difficulté à parler de fin de vie sont perçus comme les freins principaux à l'utilisation de l'outil. Néanmoins les MG pensent qu'il permet d'aborder le sujet des directives anticipées auprès des patients et les amène à une réflexion sur leur fin de vie. Selon les médecins, la mise en place du dispositif nécessiterait d'être accompagné d'une information de la population et une formation des professionnels de santé.
Discussion : Les documents de la HAS sont complets et peuvent faciliter la rédaction des directives anticipées s'il y a une information de la population par les médias. Cela doit s'accompagner de la démocratisation de la discussion sur la fin de vie entre le patient et son médecin. Elle devra être initiée par le médecin.
Origine : BDSP. Notice produite par BIUSANTE 89AR0xCn. Diffusion soumise à autorisation
Introduction : alors que l'intégration de la démarche palliative aux études de médecine est un des objectifs du plan national de développement des soins palliatifs, quelles sont les attentes des internes de médecine générale quant à une formation en soins palliatifs ?
Méthode : il s'agit d'une étude descriptive, réalisée à partie d'un questionnaire envoyé par mail aux internes inscrits en Diplôme d'Etudes Spécialisées (DES) de médecine générale de l'Université de Reims Champagne Ardenne (URCA) pour l'année universitaire 2016-2017. L'enquête s'est déroulée entre le 9 octobre et le 11 novembre 2017. Résultats : 93 réponses ont été analysées. Quatre-vingt-douze pour cent des répondeurs souhaitent une formation plus approfondie en soins palliatifs. Les principaux types de formations souhaités étaient : la discussion de cas cliniques en groupes, les stages d'initiation en structures de soins palliatifs et les débriefings sur les lieux de stage avec un médecin sénior. Ils souhaitaient la mise en place de cette formation en troisième cycle des études médicales et avant confrontation à des situations palliatives.
Discussion : la mise en pratique permet de nous améliorer dans la prise en charge du patient et de créer notre propre identité professionnelle en développant nos compétences. Le modèle de formation britannique est celui qui semble le plus adapté aux attentes de nos internes. Actuellement la formation des médecins évolue, avec l'application des mesures proposées par le plan national de développement des soins palliatifs. Désormais un enseignement sur les soins palliatifs et un stage court sont proposés en deuxième cycle des études médicales. Il parait primordial d'élargir cette mesure en troisième cycle.
Conclusion : les internes de médecine générale de l'URCA souhaitent une formation approfondie en soins palliatifs au cours du DES de médecine générale, avec mise en pratique clinique.
Origine : BDSP. Notice produite par BIUSANTE HR0xrBID. Diffusion soumise à autorisation