Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
Objective: Communication between patients and end-of-life care providers requires sensitivity given the context and complexity involved. This systematic review uses a narrative approach to synthesise clinicians’ understandings of communication in end-of-life care.
Methods: A systematic, narrative synthesis approach was adopted given the heterogeneity across the 83 included studies. The review was registered prospectively on PROSPERO (ID: CRD42019125155]. Medline was searched for all articles catalogued with the MeSH terms “palliative care,” “terminal care” or “end-of-life care,” and “communication”. Articles were assessed for quality using a modified JQI-QARI tool.
Results: The findings highlight the centrality and complexity of communication in end-of-life care. The challenges identified by clinicians in relation to such communication include the development of skills necessary, complexity of interpersonal interactions, and ways in which organisational factors impact upon communication. Clinicians are also aware of the need to develop strategies for interdisciplinary teams to improve communication.
Conclusion: Training needs for effective communication in end-of-life contexts are not currently being met.
Practice Implications: Clinicians need more training to address the lack of skills to overcome interactional difficulties. Attention is also needed to address issues in the organisational contexts in which such communication occurs.
Background: Advance care planning (ACP) conversations are an important intervention to provide care consistent with patient goals near the end of life. The emergency department (ED) could serve as an important time and location for these conversations.
Objectives: To determine the feasibility of an ED-based, brief negotiated interview (BNI) to stimulate ACP conversations among seriously ill older adults.
Methods: We conducted a pre/postintervention study in the ED of an urban, tertiary care, academic medical center. From November 2017 to May 2019, we prospectively enrolled adults =65 years of age with serious illness. Trained clinicians conducted the intervention. We measured patients' ACP engagement at baseline and follow-up (3 ± 1 weeks) and reviewed electronic medical record documentation of ACP (e.g., medical order for life-sustaining treatment [MOLST]).
Results: We enrolled 51 patients (mean age = 71; SD 12), 41% were female, and 51% of patients had metastatic cancer. Median duration of the intervention was 11.8 minutes; few (6%) of the interventions were interrupted. We completed follow-up for 61% of participants. Patients' self-reported ACP engagement increased from 3.0 to 3.7 out of 5 after the intervention (p < 0.01). Electronic documentation of health care proxy forms increased (75%–94%, n = 48) as did MOLST (0%–19%, n = 48) during the six months after the ED visit.
Conclusion: A novel, ED-based, BNI intervention to stimulate ACP conversations for seriously ill older adults is feasible and may improve ACP engagement and documentation.
Background: Communication and shared decision-making (SDM) are essential to patient-centered care. Hospital-based palliative care with patients with limited health literacy (LHL) poses particular demands on communication. In this context, patients’ emotions and vulnerable condition impact their skills to obtain, understand, process and apply information about health and healthcare even more. If healthcare providers (HCPs) meet these demands, it could enhance communication. In this study, HCPs were interviewed and asked for their strategies, barriers and suggestions for improvement regarding communication and SDM with LHL patients in hospital-based palliative care.
Methods: qualitative interview study was conducted in 2018 in four Dutch hospitals with 17 HCPs—11 physicians and 6 nurses. Transcripts were analyzed using thematic analysis.
Results: In general HCPs recognized limited literacy as a concept, however, they did not recognize limited health literacy. Regarding SDM some HCPs were strong advocates, others did not believe in SDM as a concept and perceived it as unfeasible. Furthermore, five themes, acting as either strategies, barriers or suggestions for improvement emerged from the interviews: 1) time management; 2) HCPs’ communication skills; 3) information tailoring; 4) characteristics of patients and significant others; 5) the content of the medical information.
Conclusions: According to HCPs, more time to communicate with their patients could resolve the most prominent barriers emerged from this study. Further research should investigate the organizational possibilities for this and the actual effectiveness of additional time on effective communication and SDM. Additionally, more awareness for the concept of LHL is needed as a precondition for recognizing LHL. Furthermore, future research should be directed towards opportunities for tailoring communication, and the extent to which limited knowledge and complex information affect communication and SDM. This study provides first insights into perspectives of HCPs, indicating directions for research on communication, SDM and LHL in hospital-based palliative care.
The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians’ lack of time, difficulties in finding the right time to discuss ICD deactivation, patients’ reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.
Background: Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as “places of death” as opposed to “places of life” meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC.
Methods: A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants.
Results: A total of 242 h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us.
Conclusion: The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.
Les uns et les autres ont des temps différents et des représentations très dissemblables du temps qui reste. Comment peuvent-ils se rencontrer ? Ce qui se passe entre le malade et celui qui prend soin de lui n'est pas une simple relation, laquelle n'exige qu'une coïncidence dans l'espace et un échange le plus souvent langagier. Ce qui se passe s'appelle une rencontre qui, en plus, exige que le rencontrant et le rencontré partagent ici et maintenant le même présent. Ce qui caractérise la patience, c'est la déprise de soi-même et de ce qui constitue le tissu de chaque être : le temps.
Une question éthique autour de ce qui s'engage dans le soin, son essence même : la rencontre de personnes prises dans un mouvement de l'un vers l'autre. Entre l'accélération pour les soignants et la décélération pour les soignés, comment retrouver un espace pour la relation ? Car si le temps apparaît souvent comme une impossibilité, on peut penser des oasis de décélération qui nous permettent de croire que nos identités sont ouvertes à de vastes champs de possibles.
Background: Understanding patients' goals and values is important to ensure goal-concordant care; however, such discussions can be challenging. Little is known about the impact of having these discussions on hospitalists.
Objective: To assess the impact on hospitalists of a system that reminds them to have serious illness conversations with their patients identified with potential unmet palliative needs.
Design: Two group cohort trial.
Setting/Subjects: Single academic center. Internal medicine hospitalist physicians, nurse practitioners, and physician's assistants.
easurements: Before the trial, all participants received serious illness conversation training. During the trial, hospitalists on intervention units received verbal notification when their recently admitted patients were identified using a computer algorithm as having possible unmet palliative needs. Hospitalists on the control unit received no notifications. At baseline and three months, hospitalists completed questionnaires regarding communication skill acquisition, perception of the importance of these conversations, and sense of the meaning gained from having them.
Results: Both groups had similar improvements in their self-reported communication skills and experienced a small decline in how important they felt the conversations were. Neither group perceived having the discussions as being affectively harmful to patients. The intervention hospitalists, over time, reported a slight reduction in the sense of meaning they achieved from the conversations.
Conclusion: Routinely informing hospitalists when their patients were identified as being at increased risk for unmet palliative needs did not increase the sense of meaning these providers achieved. It is likely the pretrial training accounted for many of the positive outcomes in communication skills observed in both arms of the trial.
Background: Serious illness conversations are part of advance care planning (ACP) and focus on prognosis, values, and goals in patients who are seriously ill. To be maximally effective, such conversations must be documented accurately and be easily accessible.
Objectives: The two coprimary objectives of the study were to assess concordance between written documentation and recorded audiotaped conversations, and to evaluate adherence to the Serious Illness Conversation Guide questions.
Methods: Data were obtained as part of a trial in patients with advanced cancer. Clinicians were trained to use a guide to conduct and document serious illness conversations. Conversations were audiotaped. Two researchers independently compared audiorecordings with the corresponding documentation in an electronic health record (EHR) template and free-text progress notes, and rated the degree of concordance and adherence.
Results: We reviewed a total of 25 audiorecordings. Clinicians addressed 87% of the conversation guide elements. Prognosis was discussed least frequently, only in 55% of the patients who wanted that information. Documentation was fully concordant with the conversation 43% of the time. Concordance was best when documenting family matters and goals, and least frequently concordant when documenting prognostic communication. Most conversations (64%) were documented in the template, a minority (28%) only in progress notes and two conversations (8%) were not documented. Concordance was better when the template was used (62% vs. 28%).
Conclusion: Clinicians adhered well to the conversation guide. However, key information elicited was documented and fully concordant less than half the time. Greater concordance was observed when clinicians used a prespecified template. The combined use of a guide and EHR template holds promise for ACP conversations.
Jean-Pierre Gaume nous propose des clés pour transformer la relation malade - médecin en une véritable communication permettant ainsi au patient de se relier à sa maladie et de la vivre comme un langage porteur de sens. Pour parvenir à ce résultat, l'auteur a proposé dans son livre un guide de bonnes pratiques pour favoriser une écoute active et participative. Ce livre qui s'adresse à tous les soignants soucieux d'améliorer leur relation avec les malades, séduit par la richesse de son contenu et de sa documentation qui s'appuie sur plus de 190 références bibliographiques tirées de la littérature médicale, philosophique, historique, psychanalytique et éthique.
Jean-Pierre Gaume, à travers ses 40 années de médecine générale et ses 20 années d'enseignement de la discipline à la faculté de médecine, nous montre comment nous méfier des seules méthodes diagnostiques dépendantes de la biologie moléculaire, des isotopes ou de l'imagerie moderne pour accéder à la vérité du malade.
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.
The COMFORT Model has recently been revised based on feedback from bedside nurses working in palliative care and oncology and includes the following components: Connect, Options, Making Meaning, Family Caregiver, Openings, Relating, and Team. Based on clinical and nonclinical research in hospital, hospice, palliative care, and interdisciplinary education settings, the authors present the updated COMFORT Model. Originally introduced in 2012 to support the work of the nurse, the model is not a linear guide, an algorithm, a protocol, or a rubric for sequential implementation by nurses, but rather a set of communication principles that are practiced concurrently and reflectively during patient/family care. In its restructuring, we focus on the role of health literacy throughout the COMFORT components in relationship to the health literacy attributes of a health care organization. A brief summary of COMFORT components is provided and includes strategies and competencies contributing to a health-literate care organization. Both health literacy and COMFORT are explored using specific communication challenges that underscore the role of the nurse in accomplishing person-centered and culturally responsive care, especially in chronic and terminal illness. The integration of the COMFORT Model into nursing education is proposed.
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.
Le refus de soins interroge les soignants à titre individuel et collectif. Il demande d’être expliqué et compris car il peut s’agir d’une forme d’expression chez certains patients. Ces situations difficiles nécessitent d’avoir une attitude adéquate et notamment de cultiver un travail en équipe pour que soignant et soigné se sentent reconnus et respectés.
Twenty percent of Americans die in an intensive care unit (ICU), often incapacitated or requiring assisted decision making. Surrogates are often required to make urgent, complex, high-stakes decisions. Communication among patients, families, and clinicians is often delayed and inefficient with frequent missed opportunities to support the emotional and psychological needs of surrogates, particularly at the end of life. The Critical Care Nurse Communicator program is a nurse-led, primary palliative care intervention designed to improve the quality and consistency of communication in the ICU and address the informational, psychological, and emotional needs of surrogate decision-makers through the shared decision-making process.
BACKGROUND: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.
METHODS: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties.
RESULTS: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.
CONCLUSIONS: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.
BACKGROUND: Despite a majority of persons receiving hospice care in their homes, there are gaps in understanding how to facilitate goals of care conversations between persons with heart failure and healthcare providers.
AIM: To identify barriers and facilitators which shape goals of care conversations for persons with heart failure in the context of home hospice.
DESIGN: A qualitative descriptive study design was used with semi-structured interviews.
SETTING/PARTICIPANTS: We conducted qualitative interviews with persons with heart failure, family caregivers, and interprofessional healthcare team members at a large not-for-profit hospice agency in New York City between March 2018 and February 2019.
RESULTS: A total of 39 qualitative interviews were conducted, including with healthcare team members (e.g. nurses, physicians, social workers, spiritual counselors), persons with heart failure, and family caregivers. Three themes emerged from the qualitative interviews regarding facilitators and barriers in goals of care conversations for better decision-making: (1) trust is key to building and maintaining goals of care conversations; (2) lack of understanding and acceptance of hospice inhibits goals of care conversations; and (3) family support and engagement promote goals of care conversations.
CONCLUSION: Findings from this study suggest that interventions designed to improve goals of care conversations in the home hospice setting should focus on promoting understanding and acceptance of hospice, family support and engagement, and building trusting relationships with interprofessional healthcare teams.
Background: Given the national shortage of palliative care specialists relative to the need for their services, engaging nonspecialists is important to ensure patients with serious illness have an opportunity to share their goals and values with their providers. Hospital medicine clinicians are well positioned to conduct these conversations given they care for many medically complex patients. Yet, little is known about the patient experience of inpatient goals and values conversations led by hospitalist teams.
Objective: To assess patients' experience and perception of the quality of goals and values conversations.
Design/Setting/Participation: Single center, tertiary care, nonrandomized, two group cohort trial of patients hospitalized on general medical inpatient units staffed by hospital medicine clinicians previously trained to conduct serious illness conversations.
Intervention: An automated screening tool was used to identify patients at increased risk for unmet palliative needs. The multidisciplinary team was informed of the screen's results on the intervention units but not on the control units. Intervention unit clinicians were asked to consider talking with patients about their goals and values.
Results: One hundred thirty patients participated in the study. The intervention patients reported improved quality of communication and fewer anxiety and depression symptoms compared with the control patients. Hospice utilization in addition to emergency department visits and hospital readmissions did not differ between the two groups.
Conclusion: This study suggests that informing the care team regarding their patients' potential unmet palliative care needs is associated with patients reporting improved experience of their care without adverse effects on their mood.