Cet ouvrage aborde la nécessité de réfléchir ensemble au sens du prendre soin et du fait d'être soigné pour mettre en valeur l'importance d'une implication personnelle de chacun dans la relation en vue de soins de qualité.
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Effective team communication is necessary for the provision of high-quality health care. Yet, recent graduates from diverse health-care disciplines report inadequate training in communication skills and end-of-life care. This study explored the impact of a withdrawal of life-sustaining measures interprofessional simulation on team communication skills of students representing medicine, nursing, and social work. The 3-phase simulation required teams to communicate with the patient, family, and one another in the care of a seriously ill patient at the end of life. Team communication in the filmed simulations was analyzed via the Gap-Kalamazoo Communication Checklist. Results revealed fair to good communication across the 9 communication domains. Overall team communication was strongest in “shares information” and lowest in “understands the patient’s and family’s perspective” domains. Field notes revealed 5 primary themes—Team Dynamics, Awkwardness, Empathy is Everything, Build a Relationship, and Communicating Knowledge When You Have It—in the course of the data analysis. Logistical challenges encountered in simulation development and implementation are presented, along with proposed solutions that were effective for this study. This simulation provided an opportunity for interprofessional health-care provider students to learn team communication skills within an end-of-life care context.
De plus en plus souvent, nous entendons parler d'euthanasie : que ce soit par les médias, par les politiques, par les services publics ou par diverses associations, la thématique est sur toutes les langues.
Cependant, force est de constater que le sujet est bien souvent abordé avec méconnaissance ou parti pris. Mon souhait est donc d'intervenir dans cet ouvrage pour décrire le plus fidèlement possible la très dure réalité qui entoure le processus d'euthanasie.
Non, la vie dans nos hôpitaux n'est pas - ou n'est plus - un long fleuve tranquille. Elle est en crue permanente, avec de nombreux débordements quotidiens. En tant que membre du personnel soignant, je constate combien il nous est difficile à nous, infirmiers, médecins, psychologues, assistants sociaux, de garder la tête hors de l'eau, lorsqu'il est question de ce qu'on appelle pompeusement "éthique".
Après un point sur les théorisations de la mort propre, je m'arrêterai sur la question de la pensée de leur propre mort par des sujets psychotiques et/ou présentant un déficit cognitif. Enfin, je reprendrai la question du côté des professionnels et de leurs difficultés à penser la fin de vie de "leurs" résidents et à se représenter comment ceux-ci pensent, ou non, leur propre mort.
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Psychologue en équipe mobile de soins palliatifs, nous intervenons en pluridisciplinarité en intrahospitalier mais aussiauprès de structures relevant du sanitaire et du social. Nous avons pu constater que les professionnels du handicap ont un lien d'attachement particulier à leurs résidents. L'accompagnement des résidents dans le quotidien et les projets de vie inhérents aux institutions sont le signe d'un transfert et d'un contre-transfert massifs. Dans ce contexte, penser l'éventualité de la mort des résidents est marqué du sceau du refoulement. Le fantasme d'immortalité - "ça n'arrive qu'aux autres" - est présent, ce qui peut empêcher la parole à ce sujet et susciter des angoisses primitives.
AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.
BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs.
METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.
RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities.
CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size.
IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.
Aim: To investigate the association between a hospital palliative care unit assessment and hospital outcome.
Methods: This was a prospective cohort study. Data were assessed from all patients treated and followed by the hospital palliative care team (HPCT) from November 2016 until December 2017.
Results: The mean age of the 588 patients was 73.15±13.6 years. All of the patients included in the study were referred to palliative care. A large proportion of patients were affected by cancer, 69.7% (410), while 30.3% (178) were affected by an advanced chronic illness. The three most frequent cancers were: gastrointestinal (n=81, 19.8%), gynaecological (n=66, 16.1%) and lung (n=63, 15.4%); the three most frequent chronic advanced diseases were: advanced dementia (n=45, 25.3%), severe ischaemic/haemorrhagic stroke (n=36, 20.2%) and severe heart failure (n=25, 15.3%). The majority of patients were in clinical wards (n=476, 81.0%) and the average length of stay was 22.9 days. Hospital outcome trends were evaluated in terms of length of stay and number of deaths that occurred in the hospital. In particular, length of stay decreased from 25.8 days to 18.1 days, hospital death from 13 to 0 during the time that the HPCT assessed patients for an appropriate discharge.
Conclusion: The HPCT is an effective means of managing patients affected by severe illness, reducing the number of deaths that occur within the hospital, long periods of hospitalisation and instances of readmission. However, further studies are required to fully assess the impact of an HPCT on hospital outcomes.
Deaths in long-term care (LTC) facilities in Canada have increased over the years,1,2 yet the link between exposure to deaths and dying and staff well-being has rarely been investigated. In this study, we examined predictors of staff burnout, focusing specifically on exposure to deaths and dying in LTC.
Palliative care is defined as care provided by a specially trained team of clinicians that is both patient and family centered and seeks to enhance quality of life throughout the continuum of illness. Multiple studies have reported benefits associated with integrating early palliative care with standard oncology care for patients with advanced cancer to address patients’ symptoms, understanding of their disease, coping strategies, and medical decision-making. Consequently, guidelines recommend early integration of palliative care for patients with advanced cancer, concurrently with disease-directed and life-prolonging treatment. Despite the established benefits and guideline recommendations for early integration of palliative care in oncology, many patients do not receive palliative care services or receive them late in the illness trajectory, potentially due to both patient and clinician misperceptions that palliative care is appropriate only after a patient has discontinued life-prolonging therapies. Thus, a growing body of literature has sought to demonstrate that palliative care improves patient outcomes without shortening survival.
Le présent article, sous forme de dialogue, est issu de la réflexion commune entre différents soignants (oncologue, deux psychologues et infirmière de l’équipe de soins de liaison) de l’unité d’hémato-oncologie d’un hôpital universitaire pédiatrique situé au sein de l’Union européenne à propos du suivi d’O. O. était une jeune fille âgée de 15 ans au moment du diagnostic ; elle était atteinte d'une tumeur maligne pelvienne avec infiltration génitale. L’objet de cet article est le partage d’expérience autour de cette situation qui nous a fortement impliqués et a demandé un ajustement permanent de nos pratiques, de nos croyances, nous obligeant ainsi à bousculer nos codes.
Background: Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare professionals whether the decision to resuscitate at the limit of viability (intensive care versus comfort care) are influenced by the way information on incurred risks is given or received.
Methods: This is a prospective randomized controlled study. This study evaluated the attitude of healthcare professionals by testing the effect of information given through graphic fact sheets formulated either optimistically or pessimistically. The written educational fact sheet included three graphical presentations of survival and complication/morbidity by gestational age. The questionnaire was submitted over a period of 4 months to 5 and 6-year medical students from the Geneva University as well as physicians and nurses of the neonatal unit at the University Hospitals of Geneva. Our sample included 102 healthcare professionals.
Results: Forty-nine responders (48%) were students (response rate of 33.1%), 32 (31%) paediatricians (response rate of 91.4%) and 21 (20%) nurses in NICU (response rate of 50%). The received risk tended to be more severe in both groups compared to the graphically presented facts and current guidelines, although optimistic representation favoured the perception of “survival without disability” at 23 to 25 weeks. Therapeutic attitudes did not differ between groups, but healthcare professionals with children were more restrained and students more aggressive at very low gestational ages.
Conclusion: Written information on mortality and morbidity given to healthcare professionals in graphic form encourages them to overestimate the risk. However, perception in healthcare staff may not be directly transferable to parental perception during counselling as the later are usually naïve to the data received. This parental information are always communicated in ways that subtly shape the decisions that follow.
Introduction: For many patients, primary care is an appropriate setting for advance care planning (ACP). ACP focuses on what matters most to patients and ensuring health care supports patient-defined goals. ACP may involve interactions between a clinician and a patient, but for seriously ill patients ACP could be managed by a team.
Methods: We are conducting a cluster randomized trial comparing team-based to clinician-focused ACP using the Serious Illness Care Program (SICP) in 42 practices recruited from 7 practice-based research networks (PBRNs). Practices were randomized to one of the two models. Patients are referred to the study after engaging in ACP in primary care. Our target enrollment is 1260 subjects. Patient data are collected at enrollment, six months and one year. Primary outcomes are patient-reported goal-concordant care and days at home. Secondary outcomes include additional patient measures, clinician/team experience, and practice-level measures of SICP implementation.
Study Implementation: This trial was designed and is conducted by the Meta-network Learning and Research Center (Meta-LARC), a consortium of PBRNs focused on integrating engagement with patients, families, and other stakeholders into primary care research and practice. The trial pairs a comparative effectiveness study with implementation of a new program and is designed to balance fidelity to the assigned model with flexibility to allow each practice to adapt implementation to their environment and priorities. Our dissemination will report the results of comparing the two models and the implementation experience of the practices to create guidance for the spread of ACP in primary care.
INTRODUCTION: The proportion of hospitals with specialist palliative care services in the USA has increased substantially over the past decade. Severe acute brain injury presents with unique challenges, especially regarding quality of life. The growth and increased recognition of neurocritical care as a subspecialty has not been paralleled by studies regarding how best to integrate palliative care for this unique patient population. Thus, we surveyed members of the Neurocritical Care Society (NCS) to explore current practice patterns, perceptions, and preferences regarding integration of palliative care in the neurological intensive care unit (Neuro-ICU).
METHODS: We created a 19-item survey using SurveyMonkey to assess practice patterns, perceptions, and preferences of neurointensivists regarding integration of palliative care in the Neuro-ICU. The survey, approved by the NCS research committee, was distributed to all active members of the NCS.
RESULTS: A total of 424 NCS members representing 19% of the 2200 list serve members completed the survey. The majority (58%) of respondents were attending physicians, who worked primarily in a dedicated Neuro-ICU (67%), at university affiliated academic medical centers (65%). Palliative care consultations are utilized infrequently (< 11%) by the majority of the respondents (59%). The most common indication for a palliative consultation was to discuss goals of care and make treatment decisions (73%). A large majority (77%) either agreed or strongly agreed that palliative care services were utilized in the management of difficult cases apart from discussions regarding withdrawal of life sustaining therapy. Palliative care needs of Neuro-ICU patients were considered different from patients in other ICUs by the majority of respondents (66%).
CONCLUSION: Our study provides insights into the current perceptions, practice patterns, and preferences of neurointensivists as it relates to palliative care consultation in the Neuro-ICU.
Que deviennent les concepts de rencontre, d'identification, d'empathie, dans le cadre des interventions des équipes mobiles de soins palliatifs auprès des soignants ? Il est intéressant d'appréhender cette dimension spécifique de la dynamique des groupes et de la transversalité, pratique du soin à part entière mais dont il est parfois difficile de rendre compte du fait qu'elle recouvre ce que l'on pourrait nommer le travail invisible, ou symbolique, psychologique des EMSP.
L'entrée en institution d'un sujet exige de ce dernier ainsi que sa famille et ses proches d'accorder un peu de confiance pour se laisser accompagner dans les soins par les soignants. Accorder sa confiance ne se fait pas sans heurts, maladresses, malentendus, conflits qui donnent cependant aux soignants et aux résidents la possibilité de trouver des points d'aménagements, des stratégies à mettre en oeuvre où chacun trouverait sa place. Passer par le conflit permet de dialectiser et d'envisager une issue, une résolution. Cependant nous sommes au coeur d'une époque où le conflit n'est parfois qu'apparence, un bruit sourd, réduit à des positions univoques, des certitudes exprimées qui empêchent la dialectique, même inconfortable, de s'installer.
Nous ne sommes pas épargnés par la rencontre de ce phénomène dans nos EHPAD et au travers de ces deux exemples cliniques, il s'agit de rendre compte du barrage fait au conflit.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Aims and objectives: To explore how community nurses (CNs) experience the collaboration with general practitioners (GPs) and specialist palliative home care team (PHCT) nurses in palliative home care and the perceived factors influencing this collaboration.
Background: The complexity of, and the demand for palliative home care is increasing. Primary palliative care is provided by CNs and GPs, often in collaboration with PHCT nurses. Although these professionals may each individually be part of a fixed team, a new temporary team is often composed for every new palliative patient. These membership changes, referred to as team membership fluidity, challenge professionals to work effectively.
Design and methods: A qualitative research design, using semi-structured interviews with CNs. Participant selection happened through regional palliative care networks in Belgium. The network's PHCT nurses selected CNs with whom they recently collaborated. Twenty interviews were conducted. A constant comparative analysis approach was used. COREQ guidelines were followed.
Results: Formal interprofessional team meetings were not common practice. The other's approachability and knowing each other positively influenced the collaboration. Time constraints, the GPs' lack of expertise, communication style, hierarchy perception and income dependency negatively influenced the collaboration with GPs and determined PHCT nurses' involvement. The coping strategies of CNs balanced between a behaviour focused to the patient and to the professional relationship. Specialist PHCT nurses were relied upon for their expertise but also to mediate when CNs disagreed with GPs.
Conclusion: Community nurses showed to be highly adaptable within the fluid team. Strikingly, dynamics described in the doctor-nurse game 50 years ago are still present today and affect the interprofessional communication. Interprofessional education interventions can contribute to improved interprofessional collaboration.
Relevance to clinical practice: The study findings uncovered critical knowledge gaps in interprofessional collaboration in palliative home care. Insights are relevant for and related to professional wellbeing and workplace learning.
Each year, more than 500,000 children in the United States cope with life-threatening conditions. Many are hospitalized for long periods for curative treatment, and some remain in the hospital for end-of-life care. Long inpatient stays lead to tremendous physical and emotional stress for both patients and their families, and the management of the burden associated with these periods may be improved by support provided by a comprehensive pediatric palliative care team. The team has a holistic approach, coordinates many interdisciplinary services, and addresses the physical, emotional, social, and spiritual issues that are often present at the end of life.
BACKGROUND: The needs of care based on palliative principles are stressed for all people with progressive and/or life-limiting conditions, regardless of age and the place in which care is provided. Person-centred palliative care strives to make the whole person visible and prioritizes the satisfaction of spiritual, existential, social, and psychological needs to the same extent as physical needs. However, person-centred palliative care for older persons in nursing homes seems to be sparse, possibly because staff in nursing homes do not have sufficient knowledge, skills, and training in managing symptoms and other aspects of palliative care.
METHODS: This study aimed to evaluate whether an educational intervention had any effect on the staff's perception of providing person-centred palliative care for older persons in nursing homes.
METHODS: A knowledge-based palliative care intervention consisting of five 2-h seminars during a 6-month period was implemented at 20 nursing homes in Sweden. In total, 365 staff members were participated, 167 in the intervention group and 198 in the control group. Data were collected using two questionnaires, the Person-centred Care Assessment Tool (P-CAT) and the Person-Centred Climate Questionnaire (PCQ-S), answered before (baseline) and 3 months after (follow-up) the educational intervention was completed. Descriptive, comparative, and univariate logistical regression analyses were performed.
RESULTS: Both the intervention group and the control group revealed high median scores in all subscales at baseline, except for the subscale amount of organizational and environmental support in the P-CAT. The staff's high rating level of person-centred care before the intervention provides limited space for further improvements at follow-up.
CONCLUSION: This study shows that staff perceived that managers' and the organization's amount of support to them in their everyday work was the only area for improvement in order to maintain person-centred care. The experiences among staff are crucial knowledge in understanding how palliative care can be made person-centred in spite of often limited resources in nursing homes. The dose and intensity of education activities of the intervention model need to be tested in future research to develop the most effective implementation model.
TRIAL REGISTRATION: NCT02708498 . Date of registration 26 February 2016.
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.