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.
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.
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.
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.
Engaging patients in EOL discussions has many potential benefits, primarily alleviating unanswered questions, which results in increased patient and family satisfaction. All healthcare providers should be prepared to engage in EOL discussions with patients in declining health. In this article, I share an experience that shaped my views on this subject and discuss the importance of completing an advance directive before a health crisis occurs.
Behavioural and social interventions adopted to contain the outbreak of coronavirus disease 2019 (COVID-19) are strongly affecting the way that people die in many countries, such as Italy. In health-care facilities, both infected and non-infected patients are isolated. Patients can only communicate with their loved ones via mobile phones or electronic tablets, if these patients are able to use them. For physicians and nurses, who are already overwhelmed by the emergency, providing support to patients helps to maintain humanity at the end of life, but might also be emotionally exhausting.
Objectives: To map current practice regarding discussions around resuscitation across England and Scotland in patients with cancer admitted acutely to hospital and to demonstrate the value of medical students in rapidly collecting national audit data.
Methods: Collaborators from the Macmillan medical student network collected data from 251 patient encounters across eight hospitals in England and Scotland. Data were collected to identify whether discussion regarding resuscitation was documented as having taken place during inpatient admission to acute oncology. As an audit standard, it was expected that all patients should be invited to discuss resuscitation within 24 hr of admission.
Results: Resuscitation discussions were had in 43.1% of admissions and of these 64.0% were within 24 hr; 27.6% of all admissions. 6.5% of patients had a “do not attempt resuscitation” order prior to admission with a difference noted between patients receiving palliative and curative treatment (8.5% and 0.39%, respectively, p < .05). Discussions regarding escalation of care took place in only 29.3% of admissions.
Conclusions: These data highlight deficiencies in the number of discussions regarding resuscitation that are being conducted with cancer patients that become acutely unwell. It also demonstrates the value of medical student collaboration in rapidly collecting national audit data.
Purpose: Racial and ethnic minority patients receive poorer quality end-of-life (EoL) care compared with white patients. Differences in quality of communication (QOC) with clinicians may contribute to these disparities. We measured differences in satisfaction with communication in the intensive care unit (ICU) by race and ethnicity.
Materials and Methods: This is a cross-sectional survey of family members of patients in ICUs of an academic medical center serving a diverse urban population using The Family Satisfaction with the ICU (FS-ICU) and QOC scales.
Results: One hundred surveys were completed (18.8% white, non-Hispanic; 34.4% black, non-Hispanic; 31.3% Hispanic; 15.6% other race/ethnicity). Mean FS-ICU score was 84.2 (standard deviation [SD] 20.5) for white patients, 83.3 (SD 16.2) for black patients, 82.7 (SD 17.8) for Hispanic or Latino patients, and 80.9 (SD 18.8) for patients with other race/ethnicity (Kruskal-Wallis, P = .92). Differences remained insignificant when controlling for patient and respondent characteristics. The QOC scale was not scored due to nonresponse levels on questions about EoL communication.
Conclusions: Uniformly high ratings may have been influenced by avoidance of EoL discussion. This study is inconclusive regarding whether QOC influences disparities in EoL care since quality of EoL communication was not captured.
Physical activity has increasingly gained attention within palliative care. This article aims to explore how the idea of physical activity influences patients with advanced cancer and health-care professionals’ interactions. The empirical material was gathered as part of an anthropological field study about palliative care needs among 16 patients with advanced cancer, consisting of observations and interviews with patients, relatives, and professionals. Two of the patient cases were analyzed, inspired by Goffman’s theory, showing how patients and health-care professionals interact in relation to physical activity. The findings show that patients played roles either embracing physical activity or distancing it by postponement. Professionals played expert roles of duty and attachment, stressing the importance of physical activity. Thus, they accepted a minimum of physical activity when patients were close to death. Professionals regarded patients’ absence of physical activity as a lack of desire to live; patients regard it as a way to live.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
Les documentalistes sont des professionnels que les équipes soignantes croisent essentiellement au cours de leur formation initiale et de leur formation continue. Dans l’intervalle, au cours de leur carrière, les professionnels de santé voient peu de liens possibles à entretenir avec les documentalistes. Or, ceux-ci, grâce à leur analyse de l’information en soins palliatifs, sont une excellente ressource, tant pour les professionnels de santé que pour les patients. Cet article a pour objectif de décrire les bénéfices que peuvent tirer et les patients et les soignants d’une collaboration impliquant les documentalistes. Des pistes de réflexion sur des liens possibles sont également discutées.
Caring for patients who are dying is both a challenging and demanding role. This is further intensified by the expectation that in addition to attending to physical issues, nurses are expected to manage the emotional and psychological aspects of the situation. The inconsistent nature of the care pathways between differing specialist services can often mean that open access to specialist services is not possible. As such, staff may find themselves inadvertently supplementing and often reinforcing interventions offered by specialist (psychological) services with little consideration given to capacity, experience and resources. As the most 'consistently present' professionals in such settings, it is important for nursing colleagues to be aware of the emotional and psychological themes common to patients who are dying. Thus, allowing patients access to supportive conversation with professionals as and when required, ameliorating unnecessary distress.
La sédation profonde et continue est-elle un soin comme les autres ? Elle n’est pas une euthanasie déguisée. Elle n’est pas un suicide assisté. Pour celle ou celui qui la demande et y consent – on mesure le difficile de cet ultime consentement éclairé pour le malade – elle exige et engage une situation de regard sur sa vie qui se termine, loin d’être banale. Pour celles et ceux qui auront à pratiquer ce geste, c’est aussi un défi. Il engage techniquement – il faut maîtriser cette pratique – ; affectivement – on engage une ultime confiance mutuelle sur fond de violence –, corporellement – un corps à corps est mobilisé au plus près pour celui ou celle qui fait le geste – ; et symboliquement – il s’y engage là un nouveau rite de passage dans l’entre-deux des vivants et des morts. Comment faire alors pour que ce geste technique demeure un soin ? Comment maintenir la possibilité de la relation de soin lorsque la technicité de la sédation et ses effets paraissent créer une situation de rupture de relation définitive avec l’autre ? Que signifiera prendre soin de celui-là qui, désormais, poursuit et finit sa vie dans un état de sédation profonde ?
Les mots du soin sont déjà l’expression d’une attention soignante. Nous nous sommes habitués à une partition, au moins lexicale, entre technique et soin, entre médecin et soignant(e)s, entre cure et care. L’arrivée de nouvelles techniques et de nouvelles pratiques en soins palliatifs avec les pratiques sédatives échappe-t-elle à cette partition …
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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.