Production défensive qui permet de relâcher les tensions, l'humour permet au groupe de fonctionner autour de l'angoisse de mort commune. Elle limite ainsi l'émergence de conflits en permettant de dire autrement ce qui ne peut être entendu. L'humour a cette particularité de modifier la forme sans changer le fond. Ainsi la parole circule, les rires fusent, et les conflits pulsionnels trouvent une réponse acceptable laissant entendre l'angoisse et sa résolution au détour d'une tournure humoristique.
Sexuality and intimacy are poorly researched in both people living with Parkinson's and in older people. Triggers for discussion usually centre on sexual dysfunction and hypersexuality in relation to Parkinson's. However, there are many more factors that impact on physical and emotional connectedness. Despite highlighting this unmet need there are limited tools or comprehensive assessments available to help improve quality of life. Further research is required within this field, with emphasis on health professionals' education and on highlighting to patients that they have permission for this topic to be discussed and actioned.
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...
Stillbirth constitutes a unique form of grief related to the death of an unborn child. This study explores the experiences of eight couples who lost a child to stillbirth, from the time they suspected something was wrong to their release from the hospital and beyond. Couples were interviewed conjointly and data were analyzed qualitatively using a phenomenological approach. Analysis revealed themes of positive and negative encounters with hospital staff, grief and loss, relationships with spouse and family, and long-term impacts. Implications for clinicians are discussed, including gender differences in the grief process for fathers and mothers.
L'entrée en institution d'un sujet exige de ce dernier ainsi que sa famille et ses proches d'accorder un peu de confiance pour se laisser accompagner dans les soins par les soignants. Accorder sa confiance ne se fait pas sans heurts, maladresses, malentendus, conflits qui donnent cependant aux soignants et aux résidents la possibilité de trouver des points d'aménagements, des stratégies à mettre en oeuvre où chacun trouverait sa place. Passer par le conflit permet de dialectiser et d'envisager une issue, une résolution. Cependant nous sommes au coeur d'une époque où le conflit n'est parfois qu'apparence, un bruit sourd, réduit à des positions univoques, des certitudes exprimées qui empêchent la dialectique, même inconfortable, de s'installer.
Nous ne sommes pas épargnés par la rencontre de ce phénomène dans nos EHPAD et au travers de ces deux exemples cliniques, il s'agit de rendre compte du barrage fait au conflit.
Objective/Background: About 15% of grievers experience complicated grief. We determined cross-sectional and longitudinal relations of grief and complicated grief with sleep duration and quality in the general population of elderly adults.
Participants: We included 5,421 men and women from the prospective population-based Rotterdam Study.
Methods: The Inventory of Complicated Grief was used to define grief and complicated grief. We assessed sleep with the Pittsburgh Sleep Quality Index.
Results: After 6 years, 3,511 (80% of survivors) underwent the follow-up interview. Complicated grief was cross-sectionally associated with shorter sleep duration and lower sleep quality. These associations were explained by the presence of depressive symptoms. The prospective analyses showed that sleep duration and sleep quality did not decline further during follow-up of persons who experienced grief or complicated grief.
Conclusion: In community-dwelling, middle-aged and older adults, persons with normal and complicated grief had both a shorter sleep duration and a lower sleep quality, mainly explained by depressive symptoms. However, prospective analyses showed that sleep quality and sleep duration do not decline further in persons with normal grief and complicated grief.
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.
Context: Although the early and middle stages of Huntington's disease (HD) and its complications have been well described, less is known about the course of late-stage illness. In particular, little is known about the population of patients who enroll in hospice.
Objectives: Our goal is to describe the characteristics of patients with HD who enrolled in hospice.
Methods: This is a retrospective cohort study of electronic medical record data from 12 not-for-profit hospices in the United States from 2008 to 2012.
Results: Of the 164,032 patients admitted to these hospices, 101 (0.06%) had a primary diagnosis of HD. Their median age was 57 (IQR 48-65) and 53 (52.5%) were women. Most patients were cared for by a spouse (n = 36, 36.6%) or adult child (n = 20, 19.8%). At the time of admission, most patients were living either at home (n = 39, 38.6%) or in a nursing home (n = 41, 40.6%). All were either bedbound or could ambulate only with assistance. The most common symptom reported during enrollment in hospice was pain (n = 34, 33.7%) followed by anxiety (n = 30, 29.7%), nausea (n = 18, 17.8%), and dyspnea (n = 10, 9.9%). Patients had a median length of stay in hospice of 42 days, which was significantly longer than that of other hospice patients in the sample (17 days), P < 0.001. Of the 101 patients who were admitted to hospice, 73 died, 11 were still enrolled at the time of data analysis, and 17 left hospice either because they no longer met eligibility criteria (n = 14, 13.7%) or because they decided to seek treatment for other medical conditions (n = 3, 3.0%). Of the 73 patients who died while on hospice, most died either in a nursing home (n = 29; 40%) or a hospital (n = 27; 37%). Seventeen patients (23%) died at home. No patient that started in a facility died at home.
Conclusion: Patients with HD are admitted to hospice at a younger age compared with other patients (57 vs. 76 years old) but have a significant symptom burden and limited functional status. Although hospice care emphasizes the importance of helping patients to remain in their homes, only a minority of these patients were able to die at home.
Policies and practices have been developed to operationalize assisted dying processes in Canada. This project utilized an environmental scan to determine the spectrum of assisted death reporting practices and medical certificate of death (MCD) completion procedures both nationally and internationally. Findings suggest medically assisted dying (MAiD) is represented on the MCD inconsistently nationally and internationally. Related factors include the specifics of local assisted death legislation and variations in death-reporting legislation, variation in terminology surrounding assisted death and designated oversight agency for assisted dying reporting.
PURPOSE: The purpose of this systematic review is to assess if Do Not Resuscitate (DNR) orders should be routinely rescinded during anesthesia, determine if consensus on retaining DNR orders exists in the literature, and explore the current state of clinical practice.
DESIGN: This systematic review followed preferred reporting items for systematic reviews and meta-analyses guidelines.
METHODS: In June 2018, the Cumulative Index to Nursing and Allied Health Literature and PubMed databases were systematically searched using defined inclusion/exclusion criteria.
FINDINGS: Ninety-one articles from the databases were pooled with 16 works identified as formative to the research questions. Forty-nine articles were analyzed and included in this study.
CONCLUSIONS: It is unethical to automatically rescind DNR orders during anesthesia. Patients have the right to retain their DNR orders unaltered or modify them for the perianesthesia period. Sufficient evidence exists to create meaningful policy at every level. A consensus exists among professional organizations that the standard of care is a required reconsideration of DNR orders before anesthesia.
Children receiving palliative care services are held within the context of a family and often within multiple-generational arms. The purpose of this case series paper is to recognize grandparents' roles in their family system from a personal, cultural, and anthropological perspective; to explore emotions and experiences as applies to grandparents of children receiving palliative care; and to provide tangible insight into caring well for families across the generational arc.
This study examined racial, ethnic, and other factors associated with whether older adults discussed their end-of-life (EOL) care wishes with family. A sample of 223 White, 95 African American, and 46 Hispanic adults aged 50 and older from a five-county area of Florida answered questions about sociodemographics, health, and preferences for involving family/friends in health-care decision-making. Analyses describe associations between whether discussions occurred and race/ethnicity and other factors, including preferences for family/friend involvement in health care. In descriptive analyses, one third (n = 113) had not discussed EOL care. No differences were evident between African Americans and non-Hispanic Whites. In multivariate analyses, EOL care discussions were less likely for Hispanics. Further analysis showed this lower likelihood existed among Hispanics with lesser family/friend involvement. Ethnicity influences EOL care discussion, moderated by family/friend involvement, though results are considered preliminary. Knowing the involvement of patients' family/friends could help providers initiate EOL care discussions.
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.
Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).
Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.
Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
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.
People have tattooed themselves for thousands of years, and it remains popular with various groups across mainstream society. Although many people choose tattoos that express their life philosophy, epic events in their life, or their personal mantra, the use of tattooing in medicine such as a "do not resuscitate" tattoo is increasingly becoming more common (; ). As these tattoos do not meet the legal requirements for an advance health directive, they are at best a guide to the person's wishes and at worst a useless, painful exercise. New technology such as "talking tattoos" or implantable microchips could conceivably be used to record either an audible advance health directive or directions for emergency responders to access an individual's advance health directive. This article discusses the ethical and legal implications of nonstandard advance health directive tattoos in emergency treatment situations.
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.