Cet ouvrage réunit l'intégrallité du programme, les recommandations et les cours officiels, des données de la banque nationle d'entraînement Sides ainsi que les informations indispensables à connaître pour se préparer aux ECNi (Epreuves Classantes Nationales informatisées).
Background: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia.
Methods: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia.
Results: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care.
Conclusions: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.
Objective: Patients want to discuss spirituality more with their doctors but feel disempowered. Question prompt lists (QPLs) assist conversations. This study assessed the impact of a QPL on spirituality discussions in Palliative Care (PC).
Methods: This was a sub-study of a trial in which PC patients were randomised to either receive a QPL prior to a consultation or not, to see whether its provision influenced advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a PC physician. Consultations were recorded and transcribed. Transcriptions were analysed to examine the frequency and content of spirituality discussions. We conducted logistic regression to investigate the impact of the QPL and other predictors.
Results: 174 patients participated. Spirituality was discussed in half the consultations. Patients receiving a QPL discussed spirituality 1.38 times more than controls. This finding did not reach statistical significance. First PC consultation and being asked about their concerns by the doctor were significant predictors of a spiritual discussion.
Conclusion: Patients are more likely to discuss spirituality in their first PC consultation, and when their doctor asks them about their concerns.
Practice implications: Doctors caring for patients at the end of life should routinely raise spiritual issues.
Objective: Neurosurgeons care for critically ill patients near the end of life, yet little is known about how well their training prepares them for this role. We surveyed a random sample of neurosurgery residents to describe the quantity and quality of teaching activities related to serious illness communication and palliative care, and resident attitudes and perceived preparedness to care for seriously ill patients.
Methods: A previously validated survey instrument was adapted to reflect required communication and palliative care competencies in the 2015 the Accreditation Council for Graduate Medical Education (ACGME) Milestones for Neurological Surgery. The survey was reviewed for content validity by independent faculty neurosurgeons, piloted with graduating neurosurgical residents, and distributed online in August 2016 to neurosurgery residents in the United States using the American Association of Neurological Surgeons (AANS)/Congress of Neurological Surgeons (CNS) Joint Section on Neurotrauma and Critical Care email listserv. Multiple choice and Likert scale responses were analyzed using descriptive statistics.
Results: Sixty-two responses were recorded between August 2016 and October 2016. Most respondents reported no explicit teaching on: explaining risks and benefits of intubation and ventilation (69%), formulating prognoses in neurocritical care (60%), or leading family meetings (69%). Compared to performing craniotomies, respondents had less frequent practice leading discussions about withdrawing life-sustaining treatment (61% vs. 90%, p < 0.01, "weekly or more frequently"), and were less often observed (18% vs. 87%, p < 0.01) and given feedback on their performance (11% vs. 58%, p < 0.01). Nearly all respondents (95%) felt "prepared to discuss withdrawing life-sustaining treatments," however half (48%) reported they "would benefit from more communication training during residency." Most (87%) reported moral distress, agreeing that they "participated in operations and worried whether surgery aligned with patient goals."
Conclusions: Residents in our sample reported limited formal training, and relatively less observation and feedback, on required ACGME competencies in palliative care and communication. Most reported preparedness in this domain, but many were receptive to more training. Better quality and more consistent palliative care education in neurosurgery residency could improve competency and help ensure that neurosurgical care aligns with patient goals.
Background: Palliative care (PC) is an essential component of comprehensive care of patients with intracerebral hemorrhage (ICH). In the present study, we sought to characterize the variability of PC use after ICH among US hospitals.
Methods: ICH admissions from hospitals with at least 12 annual ICH cases were identified in the Nationwide Inpatient Sample between 2008 and 2011. We used multilevel logistic regression modeling to estimate between-hospital variance in PC use. We calculated the intraclass correlation coefficient (ICC), proportional variance change, and median OR after accounting for individual-level and hospital-level covariates.
Results: Among 26,791 ICH admissions, 12.5% received PC (95% CI 11.5-13.5). Among the 629 included hospitals, the median rate of PC use was 9.1 (interquartile range 1.5-19.3) per 100 ICH admissions, and 150 (23.9%) hospitals had no recorded PC use. The ICC of the random intercept (null) model was 0.274, suggesting that 27.4% of the overall variability in PC use was due to between-hospital variability. Adding hospital-level covariates to the model accounted for 25.8% of the between-hospital variance observed in the null model, with 74.2% of between-hospital variance remaining unexplained. The median OR of the fully adjusted model was 2.62 (95% CI 2.41-2.89), indicating that a patient moving from 1 hospital to another with a higher intrinsic propensity of PC use had a 2.63-fold median increase in the odds of receiving PC, independent of patient and hospital factors.
Conclusions: Substantial variation in PC use after ICH exists among US hospitals. A substantial proportion of this between-hospital variability remains unexplained even after accounting for patient and hospital characteristics.
Objective: To improve understandings of the enablers and barriers to maintaining good quality of life for people dying, caring and grieving in rural areas.
Design and setting: In-depth interviews designed on participatory research principles were held with bereaved carers living in a small community in rural Tasmania. Participants had cared for someone until their death within the 3-year period prior.
Participants: Nineteen participants comprising 18 bereaved former carers and one person with a life-limiting illness, and all but four were over retirement age.
Study aim: To explore experiences of end-of-life care in a rural community.
Results: Participants discussed the challenges they experienced during end-of-life caring, including transport into the city for treatment, and access to basic and specialised services. However, they also reported positive aspects of formal and informal palliative care, and described experiences of personable, expert, flexible and innovative caregiving.
Conclusions: The rural location enabled personalised and innovative expressions of care. This research adds new insight into rural end-of-life palliation, as a complex intersection of supererogation, innovation and place-driven care.
Background: With growing expense in chronic illness and end-of-life (EOL) care, population-based interventions are needed to reduce the health care cost and improve patients' quality of life. The authors believe that promotion of palliative medicine is one such intervention and this promotion depends on the acceptance of palliative medicine concepts by health care professionals.
Aims of the studies: Perception of palliative medicine in chronic illness and in EOL care by health care professionals was learned in two studies carried out at a teaching community hospital 14 years apart.
Participants and methods: Voluntary and anonymous surveys were randomly distributed among physicians, nurses, and social workers/case managers. Participants in the two studies presented two different groups of health care providers.
Results of the studies: Results of the two studies were essentially similar. On most of the issues, respondents' perceptions were consistent with palliative medicine concepts and confidence in palliation grew over the 14-year period. The authors call this approach a "palliative attitude." Physicians with greater experience performed better in care planning. Younger physicians were more perceptive to withdrawal of care in futile cases. Participants' religion had no influence on perception of palliative medicine. Attendance of educational activities did not influence attitudes of health care professionals. Health care providers who favored involvement of palliative care teams in patients' management were better in care planning, interpretation of the DNR consent, use of opioids at the EOL, use of intensive care, and evaluation of the disease trajectory.
Conclusion: The authors conclude that direct interaction between palliative and interdisciplinary teams in clinical practice is the key factor in the education of health care professionals, in the development of a "palliative attitude," and in the promotion of palliative medicine.
BACKGROUND: Nurses and certified nursing assistants (CNA) have a crucial role in 24/7 continuity of palliative care for many vulnerable patients and families, however, their perspective has been largely omitted in reported barriers to palliative care.
AIM: To describe barriers to ideal palliative care that are specific to nurses and CNAs working in all care settings.
METHODS: A cross-sectional, online survey was distributed to members of the Dutch Nurses' Association.
FINDINGS: Almost 50% of the participating 2377 nurses and CNAs experienced more than five barriers to ideal palliative care in their work situation; nurses and CNAs employed in regional hospitals, mental healthcare and nursing home settings encountered more barriers than those working in other settings.
CONCLUSION: The three most common barriers were: lack of proactive care planning, lack of internal consultation possibilities and lack of assessment of care recipients' preferences and needs for a seamless transition to another setting.
Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.
Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.
Le conflit psychique se manifeste lorsque des exigences internes contraires s'opposent comme celles des pulsions de vie et des pulsions de mort. Les soins palliatifs, tissés de contradictions, de forces qui s'affrontent et d'ambivalences multiples, ne peuvent échapper au conflit. Si leur nécessité n'est plus à démontrer, la confrontation à la détresse que la déchéance, le sentiment d'indignité et l'approche de la mort génèrent reste profondément problématique.
Background: Dyspnea is a common, very distressing symptom in advanced cancer patients that challenges them, their relatives, and healthcare professionals. This narrative review summarizes important literature dealing with the evidence for opioids, benzodiazepines, oxygen, and steroids for treating dyspnea in advanced cancer patients.
Methods: A selective literature search was undertaken in PubMed, Embase, and the Cochrane Library and extended with literature from the reference lists of included studies up to April 2016. Inclusion criteria were that patients were suffering from advanced cancer and were receiving either opioids, benzodiazepines, corticosteroids, or oxygen. The outcome of interest was the reduction of dyspnea measured via a visual analogue scale (VAS), a numerical rating scale (NRS), or a Borg scale. This narrative review describes in detail the findings of 13 studies.
Results: Nine studies deal with the effectiveness of opioids for reducing dyspnea in advanced cancer patients. Five of these found a significant benefit to the use of opioids compared to a placebo. Three found no significant improvements, and two favored combinations of opioids and benzodiazepines. Few high-quality studies were available that used benzodiazepines (n = 3, no difference, significant improvement with midazolam + morphine, significant difference for midazolam) or oxygen (n = 2, both without significant difference). Only one study examined treating dyspnea with steroids in patients with advanced cancer, and that study indicated a benefit of steroids compared to a placebo.
Conclusions: Opioids are the drug of choice for treating refractory dyspnea in advanced cancer patients. Neither benzodiazepines nor oxygen showed significant benefit. In addition, there is insufficient literature available to draw a conclusion about the effectiveness of steroids for treating persistent dyspnea in advanced cancer patients.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
Psychanalyste, j'ai réalisé en août dernier un stage d'immersion d'une semaine dans un service de réanimation. Pourquoi de réanimation ? Parce que c'est en ce lieu, sans doute, avec les services de soins palliatifs, que se trouvent le plus crûment exposés les instincts de vie et de mort. De cette intrication des pulsions et des instincts de vie et de mort je souhaite me faire ici le témoin. Témoin aussi du jeu entre réalité psychique interne - monde sensoriel et émotionnel - et environnement externe - le monde qui donne à sentire et à voir. Car là aussi, comme pour l'intrication/désintrication des instincts de vie et de mort, il y a une conflictualité potentielle du dehors/dedans : chambres de résonances, échos diffractés, amplications et transformations...
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Background: Hospice is the key provider of end-of-life care to patients. As the number of U.S. hospice agencies has rapidly increased, the performance has been scrutinized more deeply.
Purpose: To foster understanding of how hospice performance is measured and what factors are associated with performance, we conducted a systematic review of empirical research on hospice performance in the United States.
Methods: Both structure-process-outcome and structure-conduct-performance frameworks were applied to categorize and summarize the hospice performance literature. A total of 36 studies were included in the systematic review.
Results: Hospice agencies adopted different strategies (e.g., service provision strategy and staffing strategy) to improve performance. Two strategic approaches (innovation and volunteer usage) were associated with better outcomes. Hospice organizational factors, market environment, and patient characteristics were related to hospice strategic conduct and performance. Majority of hospice performance studies have examined the relationship between hospice structure and strategic conduct/process, with fewer studies focusing on structure performance and even fewer concentrating on strategy performance.
Practice implications: Patient, organizational, and market factors are associated with hospice strategic conduct and performance. The majority of the literature considered the impact of hospice organizational characteristics, whereas only a few studies included patient and market factors. The summarization of factors that may influence hospice performance provides insight to different stakeholders.
The convergence of medical treatment that can extend life with written medical orders that make it possible to refuse such treatment brings the differential dynamics of contemporary end-of-life decision making into sharp focus. Communication between families and clinicians can be confusing, uncertain, and pressured when death is imminent. These situations create distress that ultimately influences the end-of-life experience for people who are dying and those who care for them. This article presents the analysis of the decisional dynamics that emerge from the intersection of the patient-family-provider awareness that death is near with the presence or absence of documentation of expressed wishes for end-of-life care. A heuristic analysis was conducted with data from three studies about urgent decision making at the end of life. Original study data included 395 surveys, in-depth interviews with 91 prehospital (paramedics and emergency medical technicians), and content analysis of 100 Medical Orders for Life Sustaining Treatment forms that led to the development of an overarching conceptual model of decision making. Four decisional contexts emerged from the intersection of awareness of dying and documentation of wishes: 1) Aware Documented, 2) Aware Undocumented, 3) Unaware Documented, and 4) Unaware Undocumented. This generalizable model, which is agnostic of setting, can help clinicians more astutely recognize the clinical situation when death is imminent, assess patients and caregivers, and intervene to help focus conversation and direct decision making. The model can also inform research, education, and care for people in some of the most vulnerable moments of life.
Cancer is the most common cause of mortality worldwide. Although recent advances of multiple modality cancer management have significantly improved the cure and control rates, a significant proportion of patients are still refractory to the standard and available treatments. Early initiation of palliative care can reduce cancer suffering, improve health-related quality of life and possibly prolong survival. It also allows patients and their caretakers to perceive the trajectory of their cancer, so that better and advanced care planning can be contemplated and implemented. The traditional beliefs and perceptions of cancer also differ significantly between the East and the West, which may also affect the preferential approach to palliative care. This review provides an overview of palliative care services in Hong Kong, as compared with other parts of the world. In addition, we shall also explore how cancer perceptions affect the decision-making on palliative care.
Pancreatic cancer is a highly lethal disease with a dismal prognosis. It will probably become the second leading cause of cancer-related death within the next decade in Western countries. Over 80% of patients undergo palliative treatment for unresectable pancreatic cancer due to locally advanced disease or metastases. Those patients often develop gastric outlet obstruction (GOO), obstructive jaundice and pain during the course of their disease. Symptoms such as vomiting, anorexia, pruritus and jaundice will impact the quality of life (QOL) and could delay the administration of the chemotherapy. Palliative therapy in pancreatic cancer aims to relieve the symptoms durably and to improve the QOL. Palliative surgery was traditionally considered as a gold standard with the "double by-pass" including biliary-digestive and gastro-jejunal anastomosis. However, since the development of endoscopic stenting and minimally invasive surgery, the choice of the best modalities remains debated. While there is still a place for surgical gastrojejunostomy (GJ) in case of duodenal or GOO, endoscopic biliary stenting during endoscopic retrograde cholangiopancreatography (ERCP) is now accepted as the gold standard in case of obstructive jaundice. In pain management, endoscopic ultrasound guided or percutaneous celiac plexus neurolysis is recommended. The selection of the best technique should consider the effectiveness and the morbidity of the treatment, the performance status of the patient and the disease stage. While endoscopic stenting is associated with earlier recovery and shorter length of stay, recurrence of symptoms and reintervention are less frequent after palliative surgery. Finally, controversy exists on whether to perform prophylactic palliative surgery in the absence of symptoms when unresectable disease is discovered during surgical exploration.
Background: The REGATTA trial showed that gastrectomy followed by chemotherapy for advanced gastric cancer with a single non-curable factor did not improve survival outcomes in comparison with chemotherapy alone. Chemotherapy is therefore the mainstay treatment for incurable gastric cancer. However, for patients who are unfit for chemotherapy, the role of palliative gastrectomy remains controversial.
Methods: We retrospectively identified 207 patients with in curable gastric cancer who underwent palliative gastrectomy or bypass surgery because of urgent symptoms who were treated from 2002 to 2014. Fifty-nine of these patients who did not receive chemotherapy following surgery were enrolled in the present study. The patients were divided into the palliative gastrectomy group (n = 40) and the bypass surgery group (n = 19). The survival outcomes of the two groups were compared. Independent prognostic factors were identified using multivariate analysis.
Results: The rate of patients who underwent gastrectomy was significantly higher among patients whose tumors were located in the upper third (n = 19/20, 95%) than in patients whose tumors were located in the lower or middle third (n = 21/39, 54%, p = 0.001). The median survival time (MST) in the gastrectomy group (145 days) was significantly longer than that in the bypass group (86 days) (p = 0.008). Bypass surgery was identified as an independent prognostic factor in the multivariate analysis (HR = 2.3; 95%CI = 1.3-4.2 p = 0.007).
Conclusions: Palliative gastrectomy may improve survival in patients with incurable gastric cancer who show emergent symptoms and who are unfit for chemotherapy.