L'entretien entre un professionnel de santé et un patient ou son proche est à la fois le coeur et l'outil de la relation.
Si un échange peut soutenir les personnes, la seule présence du clinicien ne suffit pas, pas plus que la simple conversation.
Pour que l'entretien ait valeur d'acte thérapeutique, il importe que le professionnel adopte une écoute et une attitude spécifiques afin de favoriser l'expression du patient ou de son proche.
Les auteurs, médecins, soignants, psychologues cliniciens, ne livrent pas des trames d'entretiens valables en toutes circonstances, mais des approches applicables à la singularité de chacun.
Ils partagent la richesse de leur pratique quotidienne d'entretiens, qu'ils exercent dans des services de réanimation, de médecine, ou dans le champ psychosocial.
Ils détaillent la diversité de leurs rencontres avec des patients, leur entourage ou toute personne en besoin d'aide et de soutien, que ce soit dans le cadre d'une consultation dédiée ou de façon plus informelle.
Les situations cliniques abordées permettent de saisir les enjeux de l'annonce concernant une évolution défavorable en réanimation, la limitation ou l'arrêt de thérapeutiques actives, le prélèvement d'organes, ou la nécessité d'une dialyse.
Les psychologues sont aussi conduits à intervenir dans des situations de soutien à la parentalité, face à des personnes âgées, en fin de vie, migrantes, des victimes d'abus sexuel, etc.
Cet ouvrage fournit à l'ensemble des professionnels de la santé des repères pour veiller à ce que l'entretien soit un acte thérapeutique.
Il s'agit de contribuer à une avancée vers un mieux-être du patient ou de ses proches, qui vivent des expériences générant des émotions intenses.
Durant les trois dernières décennies, l’évolution des prises en charge médicales et la réorganisation de notre système de santé ont totalement modifié les rapports entre les professionnels de santé, les patients et leurs proches. La demande de participation des patients à la démarche de soins a été croissante, posant la question de la liberté de choix des malades et questionnant de plus en plus les domaines où celle-ci serait niée.
Introduction: Although shortcomings in clinician–family communication and decision making for incapacitated, critically ill patients are common, there are few rigorously tested interventions to improve outcomes. In this manuscript, we present our methodology for the Pairing Re-engineered Intensive Care Unit Teams with Nurse-Driven Emotional support and Relationship Building (PARTNER 2) trial, and discuss design challenges and their resolution.
Methods and analysis: This is a pragmatic, stepped-wedge, cluster randomised controlled trial comparing the PARTNER 2 intervention to usual care among 690 incapacitated, critically ill patients and their surrogates in five ICUs in Pennsylvania. Eligible subjects will include critically ill patients at high risk of death and/or severe long-term functional impairment, their main surrogate decision-maker and their clinicians. The PARTNER intervention is delivered by the interprofessional ICU team and overseen by 4–6 nurses from each ICU. It involves: (1) advanced communication skills training for nurses to deliver support to surrogates throughout the ICU stay; (2) deploying a structured family support pathway; (3) enacting strategies to foster collaboration between ICU and palliative care services and (4) providing intensive implementation support to each ICU to incorporate the family support pathway into clinicians’ workflow. The primary outcome is surrogates’ ratings of the quality of communication during the ICU stay as assessed by telephone at 6-month follow-up. Prespecified secondary outcomes include surrogates’ scores on the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the modified Patient Perception of Patient Centredness scale, the Decision Regret Scale, nurses’ scores on the Maslach Burnout Inventory, and length of stay during and costs of the index hospitalisation.
We also discuss key methodological challenges, including determining the optimal level of randomisation, using existing staff to deploy the intervention and maximising long-term follow-up of participants.
Ethics and dissemination: We obtained ethics approval through the University of Pittsburgh, Human Research Protection Office. The findings will be published in peer-reviewed journals.
Background: When patients are likely to die in the coming hours or days, families often want prognostic information. Prognostic uncertainty and a lack of end-of-life communication training make these conversations challenging.
Aim: The objective of this study is to understand how clinicians and the relatives/friends of patients at the very end of life manage uncertainty and reference time in prognostic conversations.
Design: Conversation analysis of audio-recorded conversations between clinicians and the relatives/friends of hospice inpatients.
Setting/participants: Experienced palliative care clinicians and relatives/friends of imminently dying hospice inpatients. Twenty-three recorded conversations involved prognostic talk and were included in the analysis.
Results: Requests for prognostic information were initiated by families in the majority of conversations. Clinicians responded using categorical time references such as ‘days’, allowing the provision of prognostic estimates without giving a precise time. Explicit terms such as ‘dying’ were rare during prognostic discussions. Instead, references to time were understood as relating to prognosis. Relatives displayed their awareness of prognostic uncertainty when requesting prognostic information, providing clinicians with ‘permission’ to be uncertain. In response, clinicians often stated their uncertainty explicitly, but presented evidence for their prognostic estimates, based on changes to the patient’s function previously discussed with the family.
Conclusion: Prognostic uncertainty was managed collaboratively by clinicians and families. Clinicians were able to provide prognostic estimates while being honest about the related uncertainty, in part because relatives displayed their awareness of uncertainty within their requests. The conversation analytic method identified contributions of both clinicians and families, and identified strategies based on real interactions, which could inform communication training.
Background: Communication between clinicians and families of dying children in the pediatric intensive care unit (PICU) is critically important for optimal care of the child and the family.
Objective: We examined the current state of clinician perspective on communication with families of dying children in the PICU.
Design: Prospective case series over a 15-month study period.
Setting/Subjects: We surveyed nurses, psychosocial staff, and physicians who cared for dying children in PICUs at five U.S. academic hospitals.
Measurements: Clinicians reported on the location of communication, perceived barriers to end-of-life care, and rated the quality of communication (QOC).
Results: We collected 565 surveys from 287 clinicians who cared for 169 dying children. Clinicians reported that the majority of communication occurred at the bedside, and less commonly family conferences and rounds. Ten barriers to care were examined and were reported with frequencies of 2%–32%. QOC was rated higher when the majority of conversations occurred during family conferences (p = 0.01) and lower for patients of non-white race (p = 0.03). QOC decreased when 8 of the 10 barriers to care were reported.
Conclusions: When a child is dying, clinicians report that communication with the family occurs most frequently at the child's bedside. This has important implications for future ICU communication research as the majority of previous research and education has focused on family care conferences. In addition, findings that QOC is perceived as lower for non-white patients and when clinicians perceive that barriers hindering care are present can help direct future efforts to improve communication in the PICU.
AIMS AND OBJECTIVES: The proposed study aimed to answer the following question: What communication issues do nurses find challenging when caring for people with life-limiting illness?
BACKGROUND: Evidence suggests that attitudes, skills and knowledge about how nurses communicate effectively with patients and their families could be improved. However, the literature predominantly focuses on nurses working in oncology and the medical profession.
DESIGN: A qualitative descriptive design was used.
METHODS: Focus groups were conducted with 39 nurses from three wards within a regional healthcare organisation in Victoria, Australia. Data were analysed using thematic content analysis. The COREQ checklist was used to document reporting of the study.
RESULTS: In their view, nurses have the potential to develop a strong bond with patients and their families. Three key themes were identified: (a) feeling unskilled to have difficult conversations with patients who have life-limiting illness; (b) interacting with family members adds complexity to care of patients who have life-limiting illness; and (c) organisational factors impede nurses' capacity to have meaningful conversations with patients and their families.
CONCLUSIONS: Caring for individuals with life-limiting illness is complex and often occurs in an emotionally charged environment. However, nurses report being hampered by time restraints and lack of information about the patient's condition and goals of care. Limitations in conversation structure and a comprehensive range of core communication skills affect their ability to confidently engage in conversations, particularly when they are responding to prognostic questions.
RELEVANCE TO CLINICAL PRACTICE: Whilst nurses are responsible for performing technical skills, they can maximise care by developing a trusting relationship with patients and their relatives. Increased acuity limits the time nurses have to talk with patients. In addition, they lack confidence to deal with difficult questions. Specific training may increase nurses' confidence and efficiency when communicating with patients and their families.
BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an unsuccessful resuscitation, including parental perspectives.
METHODS: Clinicians from different backgrounds participated in a standardized, videotaped, simulated neonatal resuscitation in the presence of parent actors. The infant remained pulseless; participants communicated with the parent actors before, during, and after discontinuing resuscitation. Twenty-one evaluators with varying expertise (including 6 bereaved parents) viewed the videos. They were asked to score clinician-parent communication and identify the top communicators. In open-ended questions, they were asked to describe 3 aspects that were well done and 3 that were not. Answers to open-ended questions were coded for easily reproducible behaviors. All the videos were then independently reviewed to evaluate whether these behaviors were present.
RESULTS: Thirty-one participants' videos were examined by 21 evaluators (651 evaluations). Parents and actors agreed with clinicians 81% of the time about what constituted optimal communication. Good communicators were more likely to introduce themselves, use the infant's name, acknowledge parental presence, prepare the parents (for the resuscitation, then death), stop resuscitation without asking parents, clearly mention death, provide or enable proximity (clinician-parent, infant-parent, clinician-infant, mother-father), sit down, decrease guilt, permit silence, and have knowledge about procedures after death. Consistently, clinicians who displayed such behaviors had evaluations >9 out of 10 and were all ranked top 10 communicators.
CONCLUSIONS: During a neonatal end-of-life scenario, many simple behaviors, identified by parents and providers, can optimize clinician-parent communication.
Effective communication between clinicians and seriously ill patients and their families about a patient's goals of care is essential to patient-centered, goal-concordant, end-of-life care. Effective goals-of-care communication between clinicians and patients is associated with improved patient and family outcomes, increased clinician satisfaction, and decreased health care costs. Unfortunately, clinicians often face barriers in goals-of-care communication and collaboration, including a lack of education, time constraints, and no standardized protocols. Without clear goals-of-care communication, patients may not be able to provide guidance to clinicians about their end-of-life preferences. The purpose of this integrative review was to examine the efficacy of goals-of-care communication interventions between patients, families, and clinicians in randomized controlled trials published between 2009 and 2018. Twenty-three studies met the inclusion criteria with an overall sample (N = 6376) of patients, family members, and clinicians. Results revealed of the 6 different intervention modes, patient decision aids and patient-clinician communication consistently increased comprehension and communication. Twelve of the studies had nurses facilitate or support the communication intervention. Because nurses are a critical, trusted nexus for communication about end-of-life care, focusing on nurse interventions may significantly improve clinical outcomes and the patient experience.
Proposer de l'art-thérapie en soins palliatifs, c'est amener le malade à vivre une aventure créative qui le place dans un autre rapport à la vie. Cette "aventure" permet de changer son rapport au temps qui reste, d'un temps subi vers un temps choisi. On observe une modification du rapport à soi, en passant de la personne malade vers la personne en création. Enfin, une transformation du rapport aux soignants et aux proches peut s'esquisser.
L'épreuve de la maladie grave transforme la dynamique du couple. Les professionnels témoignent des ressources et des difficultés des couples à maintenir un espace intime et sécurisant. Il est important pour les accompagnants de réfléchir à leurs représentations du couple et à leur positionnement, à veiller à ne pas violenter davantage ces unions déjà fortement éprouvées.
Scenario: Mrs. Murphy, a 78-year-old woman has a history of heartdisease. In the last 2 years, she has been hospitalized 3 times for a series of small heart attacks. Last night, she was rushed to the intensive care unit with a massive heart attack, disoriented, weak and confused. She had no advance directives (ADs) in her possession and there were none in her medical record. The admitting intensivist, worried that her heart may stop due to the extensive damage over the years, wrote an order for full resuscitation.
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BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty.
AIM: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings.
METHODS: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items.
FINDINGS: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism.
CONCLUSION: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.
Context: Families are known to be involved in assisted dying and their involvement can be influenced by many factors.
Objectives: To explore how Swiss families interact with health care professionals and right-to-die associations regarding assisted suicide and their choices around disclosure.
Methods: A secondary data analysis on a cross-sectional qualitative interview study conducted in the Italian- and French-speaking parts of Switzerland was conducted. Interviews with 28 bereaved family members were analyzed using framework analysis.
Results: Two main themes were identified: (1) Interactions with physicians and right-to-die associations. (2) Choices about disclosing their experiences. In general, families believed that assisted suicide is a private matter, to be pursued mainly outside the medical field and involved physicians only when necessary. Families appeared to deliberately limit interaction with physicians and to be more comfortable interacting with the right-to-die associations. Some participants presumed a clear choice between assisted suicide or palliative care. Disclosing to others the decision, and preparation of assisted suicide emerged to be an important emotional burden for families. Some family members preferred to restrict disclosure before and after assisted suicide, by sometimes not informing other family members until the final days.
Conclusions : In Switzerland, there is limited interaction between families and health care professionals concerning assisted suicide decisions, whereas families reported more open interactions with right-to-die associations. It is recommended that the needs of families should be reflected in health policies, taking into consideration the different contexts where assisted dying is permitted.
INTRODUCTION: Family caregiver-provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers' experience relating to their end-of-life (EOL) communication and needs for hospice care transition.
METHODS: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data.
RESULTS: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver-provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient's terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care.
CONCLUSION: Timely EOL communication between caregivers and the providers is key to the patient's optimal transition to hospice care. Providers need to be aware of the caregivers' informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.
Ce livre regroupe l'ensemble des informations nécessaires à la pratique des soins palliatifs pédiatriques : cadre réglementaire, concepts théoriques et projet de soin. Ayant pour fil conducteur les questions auxquelles le praticien et les équipes sont confrontés au quotidien, l'ouvrage prend en compte les interactions pluridisciplinaires.
Les émotions, un concept vaste, complexe, et surtout affectant tout être humain...
Nous avons décidé par ce mémoire de travailler sur les émotions des soignants dans le cadre des soins palliatifs car ce sujet nous semble délicat, subjectif mais omniprésent dans notre profession.
Nous avons tenté de définir ce concept, d'amener une réflexion sur ce sujet et sur les difficultés potentielles rencontrées par les soignants, ainsi que l'impact sur la relation de soin.
Nous avons défini également le concept de l'intelligence émotionnelle en réfléchissant sur le fait, que cette dernière pourrait être un atout de soin.
Puis, nous avons tenté de démontrer que l'dentification de ses propres émotions par les soignants permettait une présence authentique auprès de la personne en fin de vie, et que, la présence authentique du soignant permettait à la personne soignée d'exprimer son ressenti...
The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgments were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion. Innovations in medical treatment and technological advances raise issues for all those involved in the care of children and young people especially when decisions need to be made about end of life care. Healthcare professionals have a moral and legal obligation to determine when treatment should cease in cases where it is determined to be futile. The aim should be to work collaboratively with parents but all decisions must be made in the best interests of the child. However, medical staff and parents may have differing opinions about care decisions. In part, this may be as a result of their unique relationships with the child and different understanding of the extent to which the child is in discomfort or can endure pain.
Dans cet article, l’auteur présente les bases théoriques et techniques du dispositif de médiation transculturelle mis à la disposition des équipes de soins palliatifs. Accompagner une famille dans cette épreuve est un défi pour toutes les équipes soignantes. Ce défi peut se révéler plus complexe encore lorsque soignants et parents ne partagent pas les mêmes références culturelles. Dans des situations d’impasse thérapeutique, la prise en compte du fait culturel – considéré non plus comme un frein, mais au contraire comme un catalyseur formidablement actif – peut non seulement enrichir l’interprétation médicale, mais aussi rendre possible une réelle rencontre entre le patient et son médecin.
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child’s death. However, there is a dearth of research on these families’ direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child’s terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants’ perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
"On s'était pourtant mis d'accord avec les enfants : pas d'acharnement". L''acharnement, un sujet on ne peut plus brûlant d'actualité médicale et sociétale.
Dans un service de réanimation où se mêlent technicité, souffrance, guérison, vulnérabilité, espoir et fin de vie, moi infirmière, ne peux plus me défausser face à cette famille qui par ces mots s'exclut, choque, dérange et déstabilise mon équipe.
En cours de formation continue de Soins Palliatifs et d'Accompagnement, il me faut y aller, me risquer, à la rencontre de ces parents qui ne demandent qu'à exister, être entendus, accompagnés.
Qu'a développé en moi, soignante, ce DIU si singulier pour me sentir prête à tenir une présence, tout entendre, et remettre en question ma pratique, mes positions dans des situations toujours plus complexes, humaines et éthiques telles que celles-ci ?
Les concepts d'altérité, transdisciplinarité et pratique réflexive vont m'aider à y répondre...