La spécialité de la réanimation est une discipline jeune, née dans les années 1950, la dénomination de médecine intensive-réanimation pour les services médicaux étant récente. Elle est marquée par des évolutions techniques incessantes, tout en étant soumise à de fortes demandes sociétales. Symbolisant à la fois la performance et la toute-puissance médicales aux yeux du public, cette spécialité soulève de nombreuses questions éthiques parmi les patients, leurs proches et parmi les professionnels.
La réalité d'une clinique confrontant quotidiennement à la vie, la survie et la mort conduit les professionnels de ces services à s'ouvrir à d'autres disciplines pour préserver le sens du soin et son humanité. Les auteurs font le point sur ces enjeux contemporains en s'appuyant sur leur expertise en tant que réanimateurs polyvalents ou spécialisés, soignants, ou psychologues cliniciens. Ils approchent ces questions en croisant les regards sur le vécu émotionnel et psychique des professionnels, celui des patients ou celui des familles.
Une grande variété de situations sont abordées, reflétant la réalité des services, depuis la greffe et la dialyse, le vécu de conscience altérée, l'état de coma, de réveil, à la mort cérébrale ou au don d'organe.
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BACKGROUND: Lung transplant recipients who experience serious illness could benefit from specialty palliative care (SPC), but evidence suggests that referral has been rare.
OBJECTIVE: Examine the characteristics of post-transplant SPC encounters, utilization trends, and patient characteristics associated with SPC at a center with established SPC services.
DESIGN: Retrospective cohort study of SPC utilization by 597 lung transplant recipients transplanted between 2010 and 2015. We collected data on pretransplant demographics and post-transplant SPC encounters, including timing, location, and referral reasons. Cumulative incidence of SPC and patient characteristics associated with SPC were examined by competing risks methods. Utilization in the first two post-transplant years was compared between subcohorts defined by year of transplantation.
RESULTS: SPC cumulative incidence was 27% and 43% at one and five years. More than 60% of encounters occurred in the first post-transplant year including 34% during the index transplant hospitalization. Over 90% of encounters occurred in the inpatient setting. The majority of consults were for symptom management. From 2010 to 2015 inpatient utilization in the first two post-transplant years increased from 23% to 42%, and outpatient utilization increased from 2% to 16%. Accounting for increasing utilization, pretransplant SPC and double-lung transplantation were associated with greater incidence of post-transplant SPC.
CONCLUSIONS: Lung transplant recipients may have palliative care needs early after transplantation. Increasing utilization suggests greater awareness of or changing attitudes about the utility of SPC for lung transplant recipients. Understanding transplant recipients' palliative care needs and transplant physicians' views of SPC is critical to improving the provision of SPC in lung transplantation.
OBJECTIVES: To describe the impact of advance care planning (ACP) education on nurses' confidence in ACP knowledge and practice and to identify barriers to facilitate ACP conversation in a bone marrow transplantation unit.
SAMPLE & SETTING: 60 nurses working in the bone marrow transplant unit at Oregon Health and Science University, an academic medical center.
METHODS & VARIABLES: The aim of this quality improvement project was to increase ACP conversations by nurses. The authors used a single-group pre-/post-test design to assess the effectiveness of a 30-minute educational intervention in changing nurses' confidence and practice. Group interviews were conducted to identify barriers to ACP.
RESULTS: The educational intervention increased nurses' confidence in knowledge about ACP. The number of nurses who discussed ACP with patients also increased, but it was not statistically significant. Lack of time, inefficient workflow, and concerns about questioning providers' understanding of patient preferences were identified as barriers for nurses engaging in and documenting ACP conversations.
IMPLICATIONS FOR NURSING: In addition to appropriate education, strategies that help tailor ACP practice to fit into nurse workflow and promote collaboration with other healthcare team members are needed to change nurses' ACP practice.
Luc Argent a 19 ans, il y a trois ans il a eu une greffe de cœur mais son corps la rejette. Il en a marre des hôpitaux, des médecins, des médicaments. Il ne se voit pas revivre tout le cheminement pour une deuxième greffe qui a peu de chances de prendre. Il s’organise un road trip avec sa meilleure amie Evelyne pour l’Oregon, état où le suicide assisté est légal. Ira-t-il jusqu’au bout de sa démarche ?
Purpose: Intensity of end-of-life care receives much attention in oncology because of concerns that high-intensity care is inconsistent with patient goals, leads to worse caregiver outcomes, and is expensive. Little is known about such care in those undergoing allogeneic hematopoietic cell transplantation (HCT), a population at high risk for morbidity and mortality.
Patients and Methods: We conducted a population-based analysis of patients who died between 2000 and 2013, within 1 year of undergoing an inpatient allogeneic HCT using California administrative data. Previously validated markers of intensity were examined and included: hospital death, intensive care unit (ICU) admission, and procedures such as intubation and cardiopulmonary resuscitation at end of life. Multivariable logistic regression models determined clinical and sociodemographic factors associated with: hospital death, a medically intense intervention (ICU admission, cardiopulmonary resuscitation, hemodialysis, intubation), and = two intensity markers.
Results: Of the 2,135 patients in the study population, 377 were pediatric patients (age = 21 years), 461 were young adults (age 22 to 39 years), and 1,297 were adults (age = 40 years). The most common intensity markers were: hospital death (83%), ICU admission (49%), and intubation (45%). Medical intensity varied according to age, underlying diagnosis, and presence of comorbidities at time of HCT. Patients with higher-intensity end-of-life care included patients age 15 to 21 years and 30 to 59 years, patients with acute lymphoblastic leukemia, and those with comorbidities at time of HCT.
Conclusion: Patients dying within 1 year of inpatient allogeneic HCT are receiving medically intense end-of-life care with variations related to age, underlying diagnosis, and presence of comorbidities at time of HCT. Future studies need to determine if these patterns are consistent with patient and family goals.
Parenting a child with chronic kidney disease has a profound impact on the parental caregivers across social, emotional, and physical functioning. As the survival rates for children with chronic kidney disease increase, the demands on parents caring for these children intensify. The aim of this study was to understand the lived experience of being a mother of a child who has undergone kidney transplantation. Seven mothers caring for children with chronic kidney disease in Ontario, Canada participated in in-depth interviews that were analyzed according to the principles of hermeneutic phenomenology. The present study presents the findings concerning post-traumatic growth: personal strength, new possibilities, enhanced relationships, appreciation of life and spiritual change. Recognizing positive aspects of stressful situations and the potential for growth can impact the practice of social workers and other health-care professionals. Ultimately the assistance that is provided to parent caregivers can be improved with a better understanding of the whole experience.
BACKGROUND: In comparison with foreign countries, living-organ transplantations (LOT) have been performed more frequently than dead organ transplants, including brain-dead organ transplantation (BOT) in Japan. This situation has given rise to organ transplantation tourism. Therefore, we clarify laypersons' preferences regarding organ transplantation that are producing the current situation in Japan, to suggest a possible framework for further efforts.
METHODS: Voluntary completion of a quantitative and anonymous survey was promoted online (a sample size of 1030). The questionnaire had two types of variables concerning demographic characteristics and organ transplantation-related issues.
RESULTS: LOT was favored over BOT. However, for willingness to donate to family members, the participants showed a significantly more positive attitude toward brain-dead organ donors (BODs) than living organ donors (LODs). In the evaluation of each transplantation technology, BOT and LOT were positioned in the middle, between transplantation that does not depend on others and the utilization of animal organs.
CONCLUSIONS: Although LOT was favored over BOT, for participants hypothesized to be in a position to donate and receive organs, BODs received a conversely better reputation than LODs. Our survey and discussion suggest that the present conditions of organ transplantation in Japan might be because there is a lack of deliberation on transplantation tourism and LOT. Therefore, more surveys concerning LOT cases and the implications of avoidance of organs from brain-dead bodies, coupled with more discussions based on these surveys, are necessary to formulate a Japanese transplantation policy for the future.
Pour les greffes d’organes, le donneur vivant est un donneur optimal. En effet, la possibilité de réaliser le prélèvement et la greffe dans le cadre d’une programmation réglée permet de mieux maîtriser l’évaluation des risques, l’adéquation du donneur au receveur et surtout le temps d’ischémie du greffon entre son prélèvement et sa greffe. Les enjeux ne sont pas moindres dans le domaine de la greffe de cellules souches hématopoïétiques (CSH). En effet, l’extrême rareté de la compatibilité immunologique en population générale conduit à rechercher le donneur dans la famille. C’est la seule situation dans laquelle le don peut être fait par un enfant.
Le prélèvement et la greffe d’organes relèvent du domaine de la bioéthique. Leur réalisation touche à la mort et à la re-naissance ; elle interroge chacun sur ses relations avec son corps et met en jeu les ressorts de ses convictions les plus intimes. Les questions ainsi soulevées mettent en évidence des conflits de valeurs ; elles ont trait à l’autonomie de la personne et à sa liberté de choix, au désir de sauver des vies et à la solidarité, en résonance avec les fondements de notre société républicaine « liberté, égalité et fraternité ». Mais le prélèvement pose aussi la question de la vulnérabilité des proches, ainsi que celles du poids de l’atteinte au corps pour le bénéfice d’autrui et de la dignité de la personne décédée.
Older patients with acute myelogenous leukemia (AML) are at increased risk for mortality and morbidity. While allogeneic stem cell transplantation may provide cure in some patients, many still relapse after transplant and are then left with limited therapeutic options and poor survival. Moreover, the quality of the end-of-life care for these patients has not been previously reported. We describe here the end-of-life experience of a cohort of 72 older patients with AML who relapsed after first allogeneic stem cell transplant at our dedicated cancer center. Despite a median overall survival of only 4 months, we find a high level of primary palliative care delivered by transplant/leukemia physicians through goals of care discussions and/or advanced care planning and provide evidence for high-quality end-of-life care outcomes, often with concurrent disease-directed therapy. Our results compare favorably with end-of-life care outcomes reported for older AML patients, including those who did not undergo transplant. Given the poor prognosis and unique underlying vulnerabilities in this high-risk patient population, incorporating timely advanced care planning and palliative care delivery while exploring available salvage options may further improve end-of-life care outcomes.
INTRODUCTION: Despite advances in palliative care management of physical, psychological, and emotional symptoms along the spectrum of chronic conditions, early palliative care interventions are not used frequently and comprehensively in bone marrow transplant units.
METHODS: The literature review of PubMed articles in English published until December 2017.
RESULTS: Patients with hematologic malignancies and bone marrow transplant interventions are a heterogeneous group. The majority experience symptoms associated with induction or condition regimens. Curative intent of treatment is the norm. Pain, mucositis, nausea and vomiting, diarrhea, psychological, spiritual, and emotional concerns may not be properly and comprehensively tackled by primary oncology and bone marrow transplant teams. Quality of life may be decreased due to the presence of these symptoms. Obstacles to early palliative care interventions include overestimation of survival, focus on curative intent with underestimation of palliative care needs, lack of a comprehensive understanding of hematologic malignancies and bone marrow transplant process on the side of palliative care providers, and logistical restrictions. Potential interventions include education of oncologists, palliative care providers, patients, integration of models of care pre- and posttreatment and bone marrow transplantation, development of guidelines, institutional commitment and leadership in creating new initiatives, clinical research activities to measure outcomes, and community-based participatory research.
CONCLUSIONS: Early palliative care interventions are beneficial for patients with hematologic malignancies and bone marrow transplant processes. Better understanding of barriers to its implementation and development of creative initiatives is of paramount importance. New research endeavors should focus on providers' attitudes toward patients and communities.
OBJECTIVE: Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences.
METHOD: We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation. Result We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation. Significance of results This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.
PURPOSE OF REVIEW: The purpose of this review is to synthesize recent literature regarding the provision of palliative care to patients during and following allogeneic HSCT, highlighting factors, which mediate impairments in health-related quality of life in this patient population, and the intervention approaches and models of care delivery that clinicians can consider to address unmet needs for palliative care and to strengthen patient and family resiliency.
RECENT FINDINGS: Provision of palliative care simultaneous with the delivery of treatment directed at the underlying malignancy has emerged as a recommended practice for patients with advanced cancer and high-symptom burden, and a recent randomized trial demonstrates the effectiveness of early palliative care in reducing some of the symptom burden and mood disturbances associated with HSCT. Although more research is needed, there is an expanding body of research-tested interventions to ameliorate the physical and psychological morbidity of HSCT across the transplant trajectory.
SUMMARY: Palliative care interventions delivered by an interdisciplinary team that includes transplant clinicians and palliative care across the HSCT trajectory can alleviate physical and psychological morbidity, thereby improving the patient and family experience of HSCT.
Background: Allogeneic hematopoietic cell transplantation (HCT) is associated with significant morbidity and mortality, making advance care planning (ACP) and management especially important in this patient population. A paucity of data exists on the utilization of ACP amongst allogeneic HCT recipients, and the relationship between ACP and intensity of health care utilization in these patients.
Methods: We performed a retrospective review of patients receiving allogeneic HCT at our institution from 2008 to 2015 who had subsequently died following HCT. Documentation and timing of advance directive (AD) completion were abstracted from the electronic medical record. Outcomes of interest included (a) utilization of intensive care unit level of care (ICU) at (i) any time point following HCT, (ii) within 30 days of death, (iii) within 14 days of death, (b) use of mechanical ventilation at any time point following HCT, and (c) location of death. Univariate logistic regression was performed to explore associations between AD completion and each outcome. Results: Of the 1031 patients who received allogeneic HCT during the study period, there were 422 (41%) decedents who are included in the analysis. Forty-four percent had AD documentation prior to death. A majority of patients (69%) indicated that if terminally ill, they did not wish to be subjected to life-prolonging treatment attempts. Race/ethnicity was significantly associated with AD documentation, with Non-Hispanic White patients documenting ADs more frequently (51%) compared to Hispanic (22%) or Asian patients (35%); p= 0.0007. Patients with AD were less likely to utilize the ICU during the transplant course (41% for patients with AD versus 52% of patients without AD; p= 0.03) and also were less likely to receive mechanical ventilation at any point following transplantation (21% versus 37%; p<0.001). AD documentation was also associated with decreased ICU utilization at the end-of-life; relative to patients without AD, patients with AD were more likely to die at home or in hospital as opposed to in the ICU (OR 0.44, 95% CI 0.27-0.72).
Conclusions: ACP remains underutilized in allogeneic HCT. Adoption of a systematic practice to standardize AD documentation as part of allogeneic HCT planning has the potential to significantly reduce ICU utilization and mechanical ventilation while improving quality of care at end-of-life in HCT recipients.
BACKGROUND: Limited comparative data are available on the symptom severity and burden of dialyzed versus nondialyzed end-stage renal disease (ESRD) patients and their association with negative emotional states.
OBJECTIVE: To investigate the prevalence of symptom burden and severity of ESRD patients and correlate the findings with their psychological status.
METHODS: This was a cross-sectional study of dialyzed (N = 87) and nondialyzed (N = 100) patients. The symptom burden and severity were determined using the Dialysis Symptom Index (DSI) and the psychological assessment using Depression Anxiety Stress Scale 21 (DASS-21).
RESULTS: Symptom severity evaluated using the DSI was comparable in both groups with fatigue as the most common symptom (n = 141, 75.4%), followed by sleep-related, sexual dysfunction, and dry skin problems. The symptom burden for worrying, dry skin and mouth, decreased appetite, numbness, and leg swelling were significant in not dialyzed group (p < 0.05).The DASS-21 scores revealed that 11% of patients were depressed, 21.8% were stressed, and 15.6% were anxious (p < 0.030). The prevalence of psychological disturbances was associated with high symptom burden regardless of their treatment options (p < 0.005). Dialyzed patients showed a positive psychological status trend on DASS-21 assessment. The not dialyzed group consisted of 34% from comprehensive conservative group, 26% of choice-restricted conservative care, and 40% with no definitive future plan.
CONCLUSIONS: There was no difference in the prevalence of symptom burden and severity, irrespective of the type of treatment. Psychological disturbances were associated with higher symptom burden and severity and, therefore, should be screened thoroughly to achieve optimal ESRD management.
BACKGROUND: Previous studies on renal oligohydramnios (ROH) report highly variable outcome and identify early onset of ROH and presence of extrarenal manifestations as predictors of adverse outcome in most cases. Data on termination of pregnancy (TOP) and associated parental decision-making processes are mostly missing, but context-sensitive for the interpretation of these findings. We provide here a comprehensive analysis on the diagnosis, prenatal decision-making and postnatal clinical course in all pregnancies with ROH at our medical centre over an 8-year period.
METHODS: We report retrospective chart review data on 103 consecutive pregnancies from 2008 to 2015 with a median follow-up of 554 days.
RESULTS: After ROH diagnosis, 38 families opted for TOP. This decision was associated with onset of ROH (p < 0.001), underlying renal disease (p = 0.001) and presence of extrarenal manifestations (p = 0.02). Eight infants died in utero and 8 cases were lost to follow-up. Of the 49 liveborn children, 11 received palliative and 38 underwent active care. Overall survival of the latter group was 84.2% (n = 32) corresponding to 31% of all pregnancies (32 out of 103) analysed. One third of the surviving infants needed renal replacement therapy during the first 6 weeks of life.
CONCLUSIONS: Over one third of pregnancies with ROH were terminated and the parental decision was based on risk factors associated with adverse outcome. Neonatal death was rare in the actively treated infants and the overall outcome promising. Our study illustrates that only careful analysis of the whole process, from prenatal diagnosis via parental decision-making to postnatal outcome, allows sensible interpretation of outcome data.
Decompensated cirrhosis is an illness that causes tremendous suffering. The incidence of cirrhosis is increasing and rates of liver transplant, the only cure, remain stagnant. Palliative care is focused on improving quality of life for patients with serious illness by addressing advanced care planning, alleviating physical symptoms and providing emotional support to the patient and family. Palliative care is used infrequently in patients with decompensated cirrhosis. The allure of transplant as a potential treatment option for cirrhosis, misperceptions about the role of palliative care and difficulty predicting prognosis in liver disease are potential contributors to the underutilization of palliative care in this patient population. Studies have demonstrated some benefit of palliative care in patients with decompensated cirrhosis but the literature is limited to small observational studies. There is evidence that palliative care consultation in other patient populations lowers hospital costs and ICU utilization and improves symptom control and patient satisfaction. Prospective randomized control trials are needed to investigate the effects of palliative care on traditional and patient reported outcomes as well as cost of care in decompensated cirrhosis for transplant eligible and ineligible patient populations.
Purpose: Inpatient palliative care integrated with transplant care improves patients' quality of life (QOL) and symptom burden during hematopoietic stem-cell transplant (HCT). We assessed patients' mood, post-traumatic stress disorder (PTSD) symptoms, and QOL 6 months post-transplant. Methods: We randomly assigned 160 patients with hematologic malignancies who underwent autologous or allogeneic HCT to inpatient palliative care integrated with transplant care (n = 81) or transplant care alone (n = 79). At baseline and 6 months post-transplant, we assessed mood, PTSD symptoms, and QOL with the Hospital Anxiety and Depression Scale and Patient Health Questionnaire, PTSD checklist, and Functional Assessment of Cancer Therapy-Bone Marrow Transplant. To assess symptom burden during HCT, we used the Edmonton Symptom Assessment Scale. We used analysis of covariance while controlling for baseline values to examine intervention effects and conducted causal mediation analyses to examine whether symptom burden or mood during HCT mediated the effect of the intervention on 6-month outcomes. Results: We enrolled 160 (86%) of 186 potentially eligible patients between August 2014 and January 2016. At 6 months post-transplant, intervention participants reported lower depression symptoms on the Hospital Anxiety and Depression Scale and Patient Health Questionnaire (adjusted mean difference, -1.21 [95% CI, -2.26 to -0.16; P = .024] and -1.63 [95% CI, -3.08 to -0.19; P = .027], respectively) and lower PTSD symptoms (adjusted mean difference, -4.02; 95% CI, -7.18 to -0.86; P = .013), but no difference in QOL or anxiety. Symptom burden and anxiety during HCT hospitalization partially mediated the effect of the intervention on depression and PTSD at 6 months post-transplant.
Conclusion Inpatient palliative care integrated with transplant care leads to improvements in depression and PTSD symptoms at 6 months post-transplant. Reduction in symptom burden and anxiety during HCT partially accounts for the effect of the intervention on these outcomes.
Palliative care is an interprofessional approach that focuses on quality of life of patients facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower health care utilization. Most transplant patients suffer from advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population is lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure, and transplant populations. A proposed model to provide palliative care in parallel with disease directed therapy in a transplant program has potential to improve symptom burden, quality of life, and health care utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease.
It is well known that patients undergoing haemopoietic stem-cell transplantation have substantial physical and psychological morbidity; however, little is known about how to best ameliorate the latter in the long term. Newly published data by Areej El-Jawahri (Massachussetts General Hospital, Boston, MA, USA) and colleagues have shown a lasting benefit to self-reported psychological symptoms from contact with trained palliative-care clinicians during the inpatient period.