Confrontés à des soins exigeants, parfois vitaux, quelle place reste-t-il pour la réflexivité et la considération de ce qui resiste en soi. La sensation d'une mise en impasse, vécue seul ou à plusieurs, peut alors traverser tous les acteurs. Dans ce contexte, un travail de conflictualité appellerait une déconstruction patiente pour chaque acteur, dans la sécurité d'un partenariat soignant-soigné et un exercice interdisciplinaire.
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.
Par nature, le travail en équipe mobile de soins palliatifs expose à des tensions sur le plan clinique, groupal, institutionnel, mais aussi personnel. Il est important d'identifier les interactions en jeu pour clarifier le cadre de travail et ajuster sa posture professionnelle. Riche d'une réflexion continue de notre équipe, les auteurs se proposent de décrire quelques exemples des questionnements liés à cet exercice.
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.
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.
Introduction: Ventricular-assist devices (VADs) offer end-stage heart failure patients a chance to live longer and better. VAD patient numbers are growing, as is the need for their hospice care, whether they die from cardiac or noncardiac causes. But many hospices do not accept VAD patients because of unfamiliarity with the technology. In 2017, there were no hospice agencies in our area accepting VAD patients.
Case Description: Mr. S was a 61-year-old man with a VAD implanted in 2011. In 2016, he was diagnosed with metastatic colorectal adenocarcinoma, underwent surgical resection, and suffered many postoperative complications. In January 2017, he was hospitalized for a driveline infection and bacteremia. During that stay, Mr. S opted for comfort care with the goal of returning home. The only chance of Mr. S's going home rested on our hospice agency's accepting him. In less than two weeks, our hospice staff partnered with the patient's VAD team to develop the competencies to care for Mr. S. He was stabilized at our inpatient unit and then spent several weeks at home before symptoms required return to inpatient care. When Mr. S became unresponsive, his family chose to inactivate the VAD; Mr. S's death followed quickly and peacefully. Our agency now routinely provides hospice care for VAD patients.
Discussion: It is increasingly important that hospice agencies accept VAD patients seeking hospice care. By drawing on educational resources available from VAD patients' acute-care hospital-based VAD teams, interdisciplinary education of hospice staff can be accomplished quickly and effectively.
For patients at the end of life, the oncologist's care continues beyond the cessation of disease-directed therapy. When cure or even prolongation of life is no longer possible, oncologists have one last task remaining: to provide expert care to patients at the end of life and support for their families. Physical comfort, clear communication, emotional support, helping patients maintain a sense of purpose, clarifying wishes about attempts at resuscitation, working on legacies, addressing patient distress, and helping families as they struggle with their loss are all the work of a team of clinicians, led by the oncologist, who the patient and family continue to look to as their guide, even when no further antineoplastic therapies or immunotherapies can be offered. The team often includes the rest of the oncology team of clinicians, as well as social workers, chaplains, a palliative care clinician, and, when appropriate, a hospice team. Families with young children need specialized counseling and support. Ongoing losses (in identity or function or of roles in the family, community, or workplace) contribute to spiritual and existential distress. The palliative care and hospice teams can help with life reviews and reconnection with sources of spiritual support, including religious rituals, to help reaffirm identity and roles. The oncologist's final responsibility is ongoing communication with the survivors after the patient's death. Survivors appreciate ongoing communication, cards, and phone calls to answer any remaining questions and quell any lingering doubts. These communications also bring closure to the oncologist and oncology team, allowing them to reflect on and grieve their loss and to remember the work they did with the patient and his or her family.
This chapter provides an overview or “roadmap” to behavioral intervention research in hospice and palliative care. It begins with an introduction to key concepts that will be explored throughout the book, defining the book’s scope and overarching purpose. Next, it outlines a model of behavioral intervention research in hospice and palliative care, emphasizing the keystone concepts of stakeholder engagement, cultural congruence, ethical conduct of research, and inclusion of interdisciplinary perspectives. The chapter concludes with a brief explanation of the book’s organization and an outline of the content presented in each subsequent chapter.
In this chapter, we provide a brief review of the evolution of hospice and palliative care, tracking its trajectory from a countercultural movement to its eventual inclusion in mainstream medicine. Next, we discuss the history, status, and possible future of research that informs clinical practice in this field. Finally, we delve into the concept of team science, highlighting the benefits, challenges, and—we argue—the necessity of interdisciplinary research on behavioral interventions for seriously ill patients and their families.
BACKGROUND: Speech-language pathologists (SLPs) are often called upon to assess swallowing function for older adults with advanced dementia at high risk of aspiration and make recommendations about whether the patient can safely continue oral nutrition.
OBJECTIVE: To describe the circumstances under which SLPs recommend oral nutritional intake for these patients.
METHODS: A mail survey of a national probability sample of SLPs (n = 731). Speech-language pathologists were asked if there were circumstances in which they would recommend oral feeding for patients with advanced dementia at high risk of aspiration, and if yes, to describe the circumstances under which they do so.
RESULTS: Six themes emerged: (1) when patient preferences are known; (2) for quality of life near end of life; (3) if aspiration risk mitigation strategies are employed; (4) if physician's preference; (5) if aspiration risk is clearly documented and acknowledged; and (6) if SLP is knowledgeable about current evidence of lack of benefit of feeding tubes in advanced dementia or that nothing by mouth status will not necessarily prevent aspiration pneumonia.
CONCLUSIONS: Speech-language pathologists have an important role within the interprofessional team in assessing swallowing in patients with advanced dementia, advising family and hospital staff about risks and benefits of oral feeding, and the safest techniques for doing so, to maximize quality of life for these patients near the end of life. Speech-language pathologists are often faced with balancing concerns about aspiration risk and recommending the more palliative approach of oral feeding for pleasure and comfort, potentially creating moral distress for the SLP.
INTRODUCTION: A structured and intentional approach to quality improvement is critical for clinicians specializing in palliative care and is a required component of training programs.
METHODS: We present a multimodal, comprehensive curriculum for teaching quality improvement to interdisciplinary trainees in palliative care.
RESULTS: The curriculum consists of 4 sessions, one and half hours long a piece, that focus on the purpose and practice of quality improvement and guide learners through a team-based project implementation experience. Course assessments demonstrate satisfaction with the course and improvement in targeted skills, knowledge, and attitudes.
DISCUSSION: Several key learnings stand out from our experience with this curriculum as central to the experience of students: project work completed as interdisciplinary teams, varying teaching methodologies over a longitudinal curriculum, and the opportunity for formal presentation of their work.
Palliative care (PC) teams are primed to support patients with advanced illness, including patients with mechanical circulatory support (MCS), and are increasingly being called upon to help care for these patients. Detailed guidelines for PC engagement are lacking despite key stakeholders' endorsements of collaboration. PC should encompass the decision-making period, the duration of therapy, and end-of-life care. PC teams can assist with symptom management, advance care planning, and communication across the continuum of MCS care. However, the current state of MCS and PC collaboration is variable and can be hindered by staffing challenges and clinician discomfort. To best care for patients who receive advanced cardiopulmonary life-sustaining therapies, meaningful engagement of PC during all phases of MCS is essential.
Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication about care needs and limiting research opportunities. We examined the electronic health records of nine adolescent and young adults with cancer who died after participation in an advance care planning clinical trial (N = 30). In this secondary analysis of this subgroup, disease trajectory and end-of-life information were abstracted from the electronic health record, and treatment preferences from the original study were obtained. All deceased participants older than 18 years had a surrogate decision maker identified in the electronic health record, and all deceased participants had limitations placed on their care, varying from 1.5 hours up to 2 months before death. However, assessment of relations between treatment preferences and end-of-life care was difficult and revealed the presence of circumstances that advance care planning is designed to avoid, such as family conflict. Lack of an integrated health care record regarding advance care planning and end-of-life care makes both care coordination and examination of the association between planning and goal concordant care more difficult.
BACKGROUND: Although therapeutic arts are used in the palliative care setting, little has been described about what happens during the artist-patient encounter and how these interactions can complement and integrate into the interdisciplinary model of palliative care. The objective of this study is to describe the artist-patient encounter and how artists can function in the palliative interdisciplinary model of care.
METHODS: Authors reviewed 229 reports written by artists about encounters with palliative patients, and performed thematic analysis on 95.
RESULTS: Artists describe physical, emotional and spiritual responses by patients including relaxation, invigoration and accessing spirituality, some of which were unique to the artist-patient interaction. Artists also described personal reactions including themes of professional fulfillment, kinship and empathy with patient suffering. Themes surrounding the artist-patient bond and trust also emerged.
CONCLUSIONS: The artist-patient encounter has an effect on both patients and artists, and can create a therapeutic relationship between them. Artists provide unique perspectives and contribute to care paradigms when integrated with the palliative team.
OBJECTIVES: Recent studies have shown that the early provision of palliative care (PC) integrated into oncology in the hospital has beneficial effects on the quality of life of people who are dying and their family caregivers. However, a model to integrate palliative home care (PHC) early in oncology care is lacking. Therefore, our aim is to develop the Early Palliative Home care Embedded in Cancer Treatment (EPHECT) intervention.
METHODS: We conducted a phase 0-1 study according to the Medical Research Council framework. Phase 0 consisted of a literature search on existing models for early integrated PC, and focus groups with PHC teams to investigate experiences with being introduced earlier. In phase 1, we developed a complex intervention to support the early integration of PHC in oncology care, based on the results of phase 0. The intervention components were reviewed and refined by professional caregivers and stakeholders.
RESULTS: Phase 0 resulted in components underpinning existing interventions. Based on this information, we developed an intervention in phase 1 consisting of: (1) information sessions for involved professionals, (2) general practitioner as coordinator of care, (3) regular and tailored home consultations by the PHC team, (4) a semistructured conversation guide to facilitate consultations, and (5) interprofessional and transmural collaboration.
CONCLUSION: Taking into account the experiences of the PHC teams with being involved earlier and the components underpinning successful interventions, the EPHECT intervention for the home setting was developed. The feasibility and acceptability of the intervention will be tested in a phase II study.
BACKGROUND: Integrating heart-failure and palliative care combines expertise from two cultures, life-saving cardiology and palliative care, and involves ethically difficult situations that have to be considered from various perspectives. We found no studies describing experiences of clinical ethical support (CES) in integrated cardiology and palliative care teams.
OBJECTIVE: Our aim is to describe experiences of CES among professionals after a period of three years working in a multidisciplinary team in integrated heart-failure and palliative homecare.
METHOD: The study design was descriptive qualitative, comprising interviews with seven professionals from one integrated heart-failure and palliative care team who received CES over a three-year period. The interview data were subjected to qualitative content analysis.
RESULTS: The CES was found to offer possibilities for meeting in an ethical 'free-zone' where the participants could relate to each other beyond their various professional roles and specialties. The trust within the team seemed to increase and the participants were confident enough to express their points of view. Together they developed an integrated understanding, and acquired more knowledge and a comprehensive view of the ethically difficult situation of concern. The CES sessions were considered a means of becoming better prepared to deal with ethical care issues and developing action strategies to apply in practice, from shared standpoints.
CONCLUSION: Participating in CES was experienced as meeting in an ethical 'free-zone' and seemed to be a means of facilitating integration of palliative and heart-failure care.
La spécialité de la réanimation est une discipline jeune, née dans les années 1950, la dénomination de médecine intensive-réanimation pour les services médicaux étant récente. Elle est marquée par des évolutions techniques incessantes, tout en étant soumise à de fortes demandes sociétales. Symbolisant à la fois la performance et la toute-puissance médicales aux yeux du public, cette spécialité soulève de nombreuses questions éthiques parmi les patients, leurs proches et parmi les professionnels.
La réalité d'une clinique confrontant quotidiennement à la vie, la survie et la mort conduit les professionnels de ces services à s'ouvrir à d'autres disciplines pour préserver le sens du soin et son humanité. Les auteurs font le point sur ces enjeux contemporains en s'appuyant sur leur expertise en tant que réanimateurs polyvalents ou spécialisés, soignants, ou psychologues cliniciens. Ils approchent ces questions en croisant les regards sur le vécu émotionnel et psychique des professionnels, celui des patients ou celui des familles.
Une grande variété de situations sont abordées, reflétant la réalité des services, depuis la greffe et la dialyse, le vécu de conscience altérée, l'état de coma, de réveil, à la mort cérébrale ou au don d'organe.
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BACKGROUND: Expert communication skills are essential for the delivery of effective palliative care across the domains of care. However, few health care providers receive formal communication training. To promote communication education for interdisciplinary palliative care teams, a train-the-trainer course for interdisciplinary hospital-based palliative care teams was developed to prepare them to teach other health care professionals communication skills. Course Design: The curriculum was organized by the eight domains of the National Consensus Project Guidelines for Quality Palliative Care and provided communication skills training for California-based teams. The two-day train-the-trainer course included skill-building exercises and interactive discussions to assist participants in integrating communication skills building into their clinical settings. Using a goal-directed method of teaching, faculty assisted teams in developing three institutional goals for providing palliative care communication training to other health care professionals. Evaluation of the course included immediate postcourse evaluation and follow-up evaluation at six and nine months.
RESULTS: The first statewide interdisciplinary communication training took place in January 2018 with 26 palliative care teams consisting of primarily nurses, followed by social workers, chaplains, and physicians. The 46 course participants' postcourse evaluations demonstrated high satisfaction with the course. On a scale of 1 to 5 (1 = lowest), the course met participants' expectations and objectives (4.8). The teams' precourse goals focused on (1) staff education, training, and mentorship, and (2) institution-wide system changes.
CONCLUSION: Palliative care interdisciplinary teams can incorporate communication skills into their practice and provide communication skills training to their institutions.
Delivering comprehensive end-of-life care to dying patients must involve addressing physical symptoms and psychosocial concerns. Care pathways have been introduced to support health care teams in delivering this care. This retrospective chart review explores the contributions of the Spiritual Care Team in the care of dying patients. They offer a range of interventions which include supportive care, religious and spiritual support. This study was one step towards appreciating the contributions of the Spiritual Care Team.