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.
This issue of Medical Clinics, guest edited by Dr. Eric Widera, is devoted to Palliative Care. Articles in this important issue include: Hospice and palliative care: an overview; Goals of care conversations in palliative care: A practical guide; The art and science of prognostication in palliative care; Recognizing and managing polypharmacy in advanced illness; Pain management in those with serious illness; Management of grief, depression, and suicidal thoughts in those with serious illness; Management of respiratory symptoms in those with serious illness; Management of gastrointestinal symptoms inadvanced illness; Management of urgent medical conditions at the end of life; Delirium at the end of life; Options of last resort: palliative sedation, Physician aid in dying and voluntary cessation of eating and drinking; Cannabis for symptom management; and Self-care of physicians caring for patients with serious illness.
Context: Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown.
Objectives: To describe the initiation, response, and content of emotional communication in advanced pediatric cancer.
Methods: We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences.
Results: About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%).
Conclusion: Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.
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.
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Objectives: To describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.
Methods: We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.
Results: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.
Conclusion: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.
Context: High-quality advance care planning (ACP) discussions are important to ensure patient receipt of goal-concordant care; however, there is no existing tool for assessing ACP communication quality.
Objectives: The objective of this study was to develop and validate a novel instrument that can be used to assess ACP communication skills of clinicians and trainees.
Methods: We developed a 20-item ACP Communication Assessment Tool (ACP-CAT) plus two summative items. Randomized rater pairs assessed residents' performances in video-recorded standardized patient encounters before and after an ACP training program using the ACP-CAT. We tested the tool for its 1) discriminating ability, 2) interrater reliability, 3) concurrent validity, 4) feasibility, and 5) raters' satisfaction.
Results: Fifty-eight pre/post-training video recordings from 29 first-year internal medicine residents at Mount Sinai Hospital were evaluated. ACP-CAT reliably discriminated performance before and after training (median score 6 vs. 11, P < 0.001). For both pre/post-training encounters, interrater reliability was high for ACP-CAT total scores (intraclass correlation coefficient or ICC = 0.83 and 0.82) and the summative items Overall impression of ACP communication skills (ICC = 0.73 and 0.80) and Overall ability to respond to emotion (ICC = 0.83 and 0.82). Concurrent validity was shown by the strong correlation between ACP-CAT total score and both summative items. Raters spent an average of 4.8 minutes to complete the ACP-CAT, found it feasible, and were satisfied with its use.
Conclusion: ACP-CAT provides a validated measure of ACP communication quality for assessing video-recorded encounters and can be further studied for its applicability with clinicians in different clinical contexts.
On March 28, 2020, the Office of Civil Rights at the Department of Health and Human Services (HHS) opened investigations into recently released critical care crisis triage protocols. Disability rights advocates are urging Congress to prohibit crisis triage based on “anticipated or demonstrated resource-intensity needs, the relative survival probabilities of patients deemed likely to benefit from medical treatment, and assessments of pre- or post-treatment quality of life.”
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.
Caring for persons at the end of life has dramatically changed in the last 20 years. Improved chronic illness management and aggressive life-sustaining measures for once-fatal illnesses have significantly increased longevity. People with life-limiting illnesses and their families are asked to make complex and difficult decisions about end-of-life, palliative, and hospice care. The purpose of this study was to discover and describe the culture care expressions, patterns, and practices influencing rural Appalachian families making decisions at the end of life. The qualitative, ethnonursing research method was used to analyze data from 25 interviews. The 4 themes discovered provide insights that could help improve this underserved population's access to palliative and hospice care, which in turn could help them experience a dignified death. Recommendations for health care providers could help reduce rural Appalachians' health disparities and promote meaningful, culturally congruent end-of-life care.
It is an international consensus that health care workers should be well trained to promote care for seriously ill and dying patients. Nursing students have reported that they feel inadequately prepared for palliative care. Simulation exercises have been described as increasing knowledge, skills, and competence, and participants have reported that they are more confident and prepared for palliative care with this learning approach than without. So far, there has not been much reported on how simulation contributes to learning in clinical practice. Therefore, this study explored whether learning outcomes from palliative care simulation further developed in practice. Second-year bachelor's-prepared nursing students voluntarily participated in a simulation activity as part of their hospital practice. Eleven students were interviewed about their learning experiences. The findings indicate that a prerequisite for further learning was to actively choose palliative care. Relationships with nurses, patients, and relatives and factors in themselves served as gatekeepers for attending learning situations. Becoming a nurse who can provide palliative care was described as an emotionally challenging experience. Elements that promoted learning outcomes in palliative care were simulation experience, clarified expectations, support, and a good dialog with the nurse before and after the learning situation.
INTRODUCTION: An electronic resuscitation system, implemented in 2015, within electronic patient records (EPR) at King's College Hospital NHS Foundation Trust was studied, aiming to review and improve decision documentation and communication.
METHOD: The study (January 2018 - June 2018) included all gerontology inpatients with electronic do not attempt cardiopulmonary resuscitation (e-DNACPR) decisions. Cases were identified weekly, followed by retrospective analysis of discharges. Amendments to the electronic system and improvements were implemented between cycles. CYCLE 1: One-hundred and thirty-three patients were included; 85% had an e-DNACPR form; 86% of all forms had senior doctor involvement; 68% evidenced patient/relative discussion; 13% documented multidisciplinary team (MDT) discussion.
INTERVENTIONS: A mandatory 'named nurse' field was added to the form and trust-wide education programme implemented. CYCLE 2: One-hundred and twenty-six patients were included; 100% had an e-DNACPR form; 93% evidenced senior doctor involvement; 71% evidenced patient/relative discussion; 57% documented MDT discussion.
CONCLUSION: Changes to the process and trust-wide education resulted in more robust documentation and communication.
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.
OBJECTIVES: There is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.
METHODS: We provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity.
RESULTS: Different models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia.
CONCLUSIONS: ACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.
Introduction: The End of Life Care in Advanced Kidney Disease Framework suggests that renal units should create a renal supportive care register (RSCR) to promote consistent communication with patients and to encourage advance care planning. The aim of the RSCR at Birmingham Heartlands Hospital is to identify patients who are requiring dialysis with a prognosis of less than 12 months. This work aims to explore whether patients were identified appropriately on the RSCR, and if conversations around withdrawal of dialysis and end of life took place.
Methods: We reviewed the inpatient and outpatient consultations of patients who died while listed on the RSCR between 1 January 2016 and 31 December 2018. We recorded the dates when patients were added to the RSCR and when they died. We reviewed conversations around dialysis withdrawal and events at the end of life.
Results and discussion: Data from Proton, the renal team’s coding system, showed that there were 80 deaths of patients listed on the RSCR: 59% were male, 41% were female. The median age at death was 77.5 years (interquartile range (IQR) 12.25 years). Thirty-eight per cent of these patients had an alert on Concerto, the hospital’s main electronic system, informing users that the patient was on the RSCR.
Eighty-eight per cent of patients were listed on the RSCR within 12 months of death; 69% of these were listed on the day they died. For the remaining patients who were listed on the register, Fig 1 illustrates that the median time to death from being placed on the register was 1.75 months (IQR 7.54 months).
Thirty-eight per cent of patients were offered a conversation on withdrawal of dialysis; 70% of these then opted to withdraw. Cited reasons for continuing dialysis after these conversations were families’ refusal to accept palliation and denial. Of those who did not have dialysis formally withdrawn prior to death, there were reports of dialysis being withheld due to low blood pressure and patients being too unwell to come in from home for dialysis.
Eighty-seven per cent had valid ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) forms. Two patients who did not have DNACPR forms received CPR (without return of spontaneous circulation) on the day of their death in hospital. Preferred place of death (PPD) was established in 20% of patients (Fig 2). While the majority of patients asked chose their PPD as home, 65% of patients on the RSCR died in hospital.
We recommend that all patients on the RSCR should have alerts placed on Concerto. This would ensure that the wider hospital, who may not know the patient as well as the renal team, are prompted to think about advance care planning. The literature reinforces that alerts can improve healthcare professionals’ engagement with conversations around resuscitation.2
Conclusion: Our data suggests that the deterioration of these patients may have been unrecognised. While some deaths are likely to be unexpected, we are missing opportunities to engage patients with end-stage renal disease in advance care planning.
Limited research is available on parental decision-making regarding their children's participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-making in this situation; (2) the optimal communication features physicians need when proposing inclusion in such trials; and (3) the place of the child/adolescent in the assent process. Thirty relevant studies meeting inclusion criteria were identified by searching five computerized databases (PubMed, Web of Science, Cairn, Psychinfo, EM Premium). Parental decision-making is a complex process based on hopeful expectations, multiple family considerations and the child's previous cancer experience. It is highly impacted by the quality of physicians' communication. A therapeutic alliance along with an empathetic attitude and a timely delivery of accurate information is essential. Due weight should be given to the voice of children or adolescents and their optimal level of involvement may be discussed depending on their age and maturity. They should be given age-adapted information in order to empower them to be rightfully and meaningfully involved in early-phase research. This review highlights the main gaps and necessary remedial actions to support an optimal patient care management in this situation. Physicians' training in communication, structured interdisciplinary teamwork and early integration of palliative care are three key challenges which need to be implemented to actively engage in optimization strategies which would improve patient care and family support when offering enrollment in a phase I trial.
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: Early integration of palliative care concurrently to standard cancer care is associated with several benefits for patients and their caregivers. However, communication barriers on part of the caring physicians often impede a timely referral to palliative care. This study describes the protocol of the evaluation of a communication skills training aiming to strengthen the ability of physicians to address palliative care related topics adequately and early during disease trajectory.
METHODS: We will implement a communication skills training and evaluate it within a prospective, multi-centered, two-armed randomized controlled trial (RCT), which will be conducted at four sites in Germany. Eligible subjects are all physicians treating patients with advanced cancer in their daily routine. An intervention group (IG) receiving a group training will be compared to a wait-list control group (CG) receiving the training after completion of data collection. At pre- and post-measurement points, participants will conduct videotaped conversations with standardized simulated patients (SP). Primary outcome will be the external rating of communication skills and consulting competencies addressing palliative care related topics. Secondary outcomes on core concepts of palliative care, basic knowledge, attitudes, confidence and self-efficacy will be assessed by standardized questionnaires and self-developed items. A further external assessment of the quality of physician-patient-interaction will be conducted by the SP. Longitudinal quantitative data will be analyzed using covariate-adjusted linear mixed-models.
DISCUSSION: If the communication skills training proves to be effective, it will provide a feasible intervention to promote an earlier communication of palliative care related topics in the care of advanced cancer patients. This would help to further establish early integration of palliative care as it is recommended by national and international guidelines.
Unclear communication of inauspicious prognoses may disorientate both patients and their relatives, drastically jeopardizing the planning of palliative care. This paper considers the issue of truth-telling in the communicative problems of nurses and students of nursing with terminally ill patients. The fundamental objective is the analysis of the difficulties related to the lack of truth-telling and how it might impact their professional and personal lives. A qualitative study was realized, involving 47 participants, both nurses (25) and nursing students (22), working in palliative care units or in associations of volunteers for the assistance of oncological patients. The exploration was focused on the way they relate to patients who are not aware of their real health conditions and their consequences. Particular attention was paid to their opinions concerning what could be done in order to manage such problematic situations in the near future.
Hispanic Americans are among the fastest growing minority groups in the USA, and understanding their preferences for medical decision-making and information sharing is imperative to provide high quality end of life care. Studies exploring these decision control preferences (DCPs) are limited and found inconsistent results. (1) To measure DCPs of Hispanic patients in the Bronx. (2) To measure disclosure of information preferences of Hispanic patients in the Bronx. This is a cross-sectional survey. One hundred nineteen cancer patients who self-identified as Hispanic and were waiting at the oncology clinic at Montefiore Medical Center Cancer Center. Proportions of patients endorsing DCPs and disclosure of information preferences are reported. The relationship between patient characteristics and DCPs was tested using chi-squared tests of homogeneity. The majority (63, 52.9%) preferred shared decision-making with their doctors, families or both, while 46 (38.7%) had an active decision-making style. A minority (9, 7.6%) had a passive decision-making style, deferring to their families, and only 1 (0.8%) deferring to the physician. No demographic characteristics significantly predicted DCPs. The majority of patients agreed or strongly agreed that they wanted to hear all of the information regarding their diagnosis (94%), treatment options (94%), treatment expectations (92%), and treatment risks and benefits (96%). These results confirm our hypothesis that most Hispanic patients prefer either an active or shared decision-making process rather than a passive decision-making process. Most patients prefer disclosure of diagnosis, prognosis, and plan.
Importance: Less than 25% of African American individuals have completed advance directives and are thus vulnerable to poor end-of-life care. Low-cost interventions are needed to increase engagement in advance care planning (ACP).
Objectives: To investigate whether an end-of-life conversation game motivates African American attendees to engage in ACP and to assess whether the game is well received and endorsed.
Exposures: Attendance at an end-of-life conversation game (Hello) played in groups of 4 to 6 participants for 60 minutes.
Design, Setting, and Participants: Prospective, mixed-methods cohort study conducted from 2018 to 2019 with a 3- to 11-month follow-up interview. Game events were held in 53 community venues across the US; 15 were purposively sampled for onsite research procedures. Of 428 attendees at purposively sampled sites, 386 (90%) consented to research procedures (6 attendees were removed from analysis for protocol deviation). Of 367 attendees who provided accurate contact information, 232 (63%) were contacted, and 220 were included in follow-up analyses.
Main Outcomes and Measures: The primary outcome was advance directive completion rates after the intervention. Secondary outcomes included rates of other ACP behaviors, ACP engagement, conversation satisfaction and realism, and participants’ Net Promoter Score (a measure of endorsement). Follow-up telephone interviews explored the game experience and relevant ACP behaviors of attendees.
Results: Of 380 individuals who participated (mean [SD] age, 62.2 [13.8] years; 304 were female [80%], and 348 were [92%] African American), none withdrew because of an adverse event. After the intervention, 91 of 220 attendees (41%) completed a new advance directive; 176 of 220 attendees (80%) discussed end-of-life wishes with loved ones, and 214 of 219 attendees (98%) completed at least 1 ACP behavior. There was a moderate increase in the self-efficacy domain on the ACP Engagement Survey (mean [SD] change from before to after the game, 0.54 [0.98]; P < .001). The mean (SD) conversation satisfaction score was 6.21 (0.93) (range, 1-7, with 7 being highest satisfaction), and the overall Net Promoter Score was 57.89 (range, -100 to 100, with 100 being highest endorsement). Interviews revealed 5 themes about the game: (1) it was a useful forum for ACP; (2) it provided new information and perspective; (3) it was emotionally beneficial; (4) it increased appreciation for ACP; and (5) it empowered and motivated participants to perform ACP. Mixed-methods integration showed convergence across data sets.
Conclusions and Relevance: Among a nationwide sample of African American individuals, the end-of-life conversation game appeared to be well received and was associated with high rates of ACP behavior. This low-cost and scalable tool may help reduce health disparities associated with end-of-life care.