Doris, une infirmière qui travaille en unité de soins palliatifs à Fréjus, se sépare de son époux et quitte son emploi ainsi que son domicile à la suite d'une rencontre amoureuse. Sa quête personnelle et sensuelle se construit au contact de la mort.
BACKGROUND: Place of death is important to patients and caregivers, and often a surrogate measure of health care disparities. While recent trends in place of death suggest an increased frequency of dying at home, data is largely unknown for older adults with cancer.
METHODS: Deidentified death certificate data were obtained via the National Center for Health Statistics. All lung, colon, prostate, breast, and pancreas cancer deaths for older adults (defined as >65 years of age) from 2003 to 2017 were included. Multinomial logistic regression was used to test for differences in place of death associated with sociodemographic variables.
RESULTS: From 2003 through 2017, a total of 3,182,707 older adults died from lung, colon, breast, prostate and pancreas cancer. During this time, hospital and nursing home deaths decreased, and the rate of home and hospice facility deaths increased (all p < 0.001). In multivariable regression, all assessed variables were found to be associated with place of death. Overall, older age was associated with increased risk of nursing facility death versus home death. Black patients were more likely to experience hospital death (OR 1.7) and Hispanic ethnicity had lower odds of death in a nursing facility (OR 0.55). Since 2003, deaths in hospice facilities rapidly increased by 15%.
CONCLUSION: Hospital and nursing facility cancer deaths among older adults with cancer decreased since 2003, while deaths at home and hospice facilities increased. Differences in place of death were noted for non-white patients and older adults of advanced age.
De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
BACKGROUND: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer's disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD).
OBJECTIVE: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team.
DESIGN: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA.
SUBJECTS: Hospice social workers currently practicing in the United States with at least 1 year of experience.
MEASUREMENTS: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form.
RESULTS: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p < .0001) and confidence in managing behavioral symptoms (16.86%, p = .01) and depression (25.18%, p < .0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program.
CONCLUSIONS: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.
Contexte : La recherche sur laquelle s’appuie cet article a été réalisée au cours d’un contrat doctoral en psychologie clinique. La question déployée autour des intentions et processus psychiques dans les prises de décisions à la place d’autrui dans les situations de fin de vie, a permis la mise en place d’une recherche de terrain par le biais d’observations et d’entretiens auprès de professionnels de soins palliatifs. Parmi les trois « triangulations cliniques » examinées dans la thèse, nous choisissons de nous arrêter sur une configuration particulière qui nous permet de mettre en exergue les affects négatifs qui prennent parfois place dans la relation de soin et la manière dont ceux-ci habitent les décisions que nous prenons à la place de nos patients.
Objectifs : Dans cette présentation, nous tentons de mettre en lumière certains mouvements inconscients qui nous semblent inhérents à la relation d’aide à la personne vulnérable, mais exacerbés lors de la rencontre avec des patients "déviants" (non compliants, dans le refus, etc.). Nous verrons comment cette négativité, prise dans des alliances inconscientes (R. Kaës, 2009), peut générer des situations qui relèvent parfois d’une véritable violence du soin (Ciccone et al., 2014) qu’il semble essentiel de mieux identifier afin de garantir une véritable éthique des processus décisionnels qui imprègnent les pratiques soignantes.
Méthode : Le recueil de données s’appuie sur des entretiens de recherche et des temps d’observation réalisés au sein de deux unités de soins palliatifs (USP) situées en France, organisés en deux sessions de 13 journées et/ou nuitées. Les entretiens ont été réalisés sous la forme d’une discussion guidée avec plusieurs professionnels (médecins, infirmières, aides-soignantes ou psychologues) volontaires. Les "triangulations cliniques" sont l’aboutissement d’un travail de recomposition au sujet d’un patient accueilli dans l’USP (1er point) à partir des notes d’observations de la chercheuse (2e point) et du discours des professionnels (3e point). Dans cet article, c’est le récit de M. Aïe qui est présenté parmi les trois triangulations cliniques soutenant le travail de thèse, dans ce qu’il offre la possibilité d’une mise en perspective de plusieurs niveaux de complexité autour de la négativité et des décisions prises à la place d’autrui.
Résultats : Cette présentation offre une occasion de penser le soin ainsi que la décision prise à la place d’autrui dans des dynamiques nouvelles. Les résultats cliniques obtenus à partir de la méthode de recherche originale mise en place dans la thèse montrent toute la fécondité d’un travail qui repose sur l’analyse des situations complexes à partir d’une triangulation clinique, cette triangulation permettant d’étudier les enjeux subjectifs susceptibles de s’exprimer à différents niveaux. C’est par ailleurs la perspective groupale qui est ici mise en relief, notamment au travers les alliances inconscientes basées sur le négatif de certaines situations de soin. Le récit de M. Aïe nous permet d’illustrer comment la haine se diffuse inconsciemment au sein des décisions prises pour la personne vulnérable. Ces conséquences nous appellent à déployer des stratégies pour tenter de symboliser ces affects déliants.
Conclusion : Décider à la place de l’autre vulnérable n’est une mince affaire pour personne et convoque chaque "décideur" dans ce qu’il a éprouvé à être le sujet vulnérable d’une décision prise par autrui : la figure du nourrisson en étant l’originaire (Ciccone, Bonnefoy, Bonneville, Calamote, & Deronzier, 2012). Face aux situations extrêmes de la vie où se jouent la précarité ontologique du sujet, depuis le début jusqu’à la toute fin de la vie, peut-être faut-il se saisir de positions subversives (Pacific, 2011) pour travailler l’idée qu’envisager la maltraitance comme potentiel du soin peut être un préalable à la bientraitance.
Les unités de soins palliatifs françaises peuvent accueillir des patients en phase terminale de leur maladie, mais aussi des patients qui bénéficient encore de traitement spécifique pouvant stabiliser la maladie à long terme. Or, nous ignorons comment ces soins palliatifs, qui cohabitent avec des traitements spécifiques de la pathologie et pouvant stabiliser la maladie à plus ou moins long terme, se pratiquent par les médecins qui travaillent dans ces unités d’hospitalisation. Nous avons mené une étude qualitative avec des professionnels médicaux et paramédicaux d’une USP française afin de décrire la pratique médicale en unité de soins palliatifs. Quatre « focus-groups » ont été menés avec 3 professionnels médicaux et 4 avec 11 professionnels paramédicaux. Les compétences réflexive et analytique étaient prépondérantes dans le discours des interviewés. Si l’incertitude n’était pas expressément nommée dans notre étude, elle était présente dans chaque geste ou comportement visant à comprendre la singularité du patient. Cette étude originale contribue à comprendre comment sont mis en œuvre les soins palliatifs en situation d’incertitude médicale.
Introduction : Depuis la loi de 2016, des travaux ont porté sur la sédation dont la création de l’outil SEDAPALL. L’objectif de l’étude était de réaliser un état des lieux des pratiques sédatives en unités de soins palliatifs (USP). Une réflexion sur SEDAPALL comme une aide dans la pratique quotidienne a été proposée.
Matériel/Méthode : Il s’agissait d’une étude rétrospective, multicentrique. Était inclus tout patient ayant reçu une sédation à visée palliative en fin de vie entre le 1er mars et le 31 mai 2018 dans les USP de Rouen, Caen et Le Havre. Le recueil des données s’établissait après la lecture des dossiers des patients hospitalisés sur cette période et décédés.
Résultats : Nous avons recensé 34 sédations dont 56 % à l’USP de Rouen. Douze pour cent des patients avaient rédigés leurs directives anticipées (DA). Il existait une procédure collégiale avec l’induction d’une sédation dans 65 % des cas. La technique sédative la plus utilisée était l’introduction et majoration progressive d’une dose de fond de midazolam. Les sédations étaient, pour la majorité, induites dans les situations d’urgences palliatives, profonde d’emblée et en l’absence de consentement possible. L’intentionnalité des sédations pour les hémorragies, dyspnée et agitation appartenait à l’axe D2 (sédation de durée indéterminée) ; les souffrances existentielles, douleur et morales à l’axe D3 (sédation maintenue jusqu’au décès).
Conclusion : SEDAPALL serait une aide au cours des procédures collégiales indispensable avant toute sédation. Il préciserait l’intentionnalité de la sédation et favoriserait la compréhension de ce traitement par les professionnels intervenants auprès de ces patients.
Background: Integration of palliative care services into the surgical treatment plan is important for holistic patient care. We sought to examine the association between patient race/ethnicity and county-level vulnerability relative to patterns of hospice utilization.
Patients and Methods: Medicare Standard Analytic Files were used to identify patients undergoing lung, esophageal, pancreatic, colon, or rectal cancer surgery between 2013 and 2017. Data were merged with the Centers for Disease Control and Prevention’s social vulnerability index (SVI). Logistic regression was utilized to identify factors associated with overall hospice utilization among deceased individuals.
Results: A total of 54,256 Medicare beneficiaries underwent lung (n = 16,645, 30.7%), esophageal (n = 1427, 2.6%), pancreatic (n = 6183, 11.4%), colon (n = 26,827, 49.4%), or rectal (n = 3174, 5.9%) cancer resection. Median patient age was 76 years (IQR 71–82 years), and 28,887 patients (53.2%) were male; the majority of individuals were White (91.1%, n = 49,443), while a smaller subset was Black or Latino (racial/ethnic minority: n = 4813, 8.9%). Overall, 35,416 (65.3%) patients utilized hospice services prior to death. Median SVI was 52.8 [interquartile range (IQR) 30.3–71.2]. White patients were more likely to utilize hospice care compared with minority patients (OR 1.24, 95% CI 1.17–1.31, p < 0.001). Unlike White patients, there was reduced odds of hospice utilization (OR 0.97, 95% CI 0.96–0.99) and early hospice initiation (OR 0.94, 95% CI 0.91–0.97) as SVI increased among minority patients.
Conclusions: Patients residing in counties with high social vulnerability were less likely to be enrolled in hospice care at the time of death, as well as be less likely to initiate hospice care early. The effects of increasing social vulnerability on hospice utilization were more profound among minority patients.
Limited evidence suggests carers of people with pulmonary fibrosis (PF) have a variety of information and support needs. This pilot focus group discussion, carried out in 2019, aimed to explore the needs of carers of people with pulmonary fibrosis and evaluate the impact of a UK hospice PF carers’ support group. Analysis revealed: (1) loneliness and connection, (2) negotiating with and motivating their loved-ones, and (3) the importance of the best environment for support as key themes. Participants reported a need for both practical and emotional support with the carers’ own health sometimes neglected. This evaluation concluded that peer support specifically with other PF carers was hugely valuable to the participants, as was the hospice environment itself. It is recommended that PF-specific carer support is considered when designing services for people with pulmonary fibrosis.
OBJECTIVE: To understand the impact of the COVID-19 pandemic on the hospice and palliative workforce and service delivery.
DESIGN AND SAMPLE: This was a cross-sectional survey of 36 hospice and palliative care workforce members representing all United States geographic regions.
RESULTS: Most respondents (70%) reported an increase in specific palliative care services as a result of the pandemic. Two thirds (78%) of respondents reported their agency has cared for confirmed COVID-19 patients. Only half reported the agency had access to laboratory facilities for surveillance and detection of outbreaks in both patients and staff (58%) and that the agency could test patients and providers for COVID-19 (55%). Qualitative comments described the impact of the pandemic and resulting social distancing measures on the emotional well-being of patients, families, and staff.
CONCLUSIONS: Our findings suggest that the COVID-19 pandemic has strained the palliative and hospice care workforce as it provides increased services at an unprecedented rate to patients and families. The implications of these findings are important for public health nurses who are skilled in disaster management and quickly responding to emergencies. The expertise of public health nurses can be leveraged to support palliative care agencies as they strive to manage the pandemic in the communities they serve.
Agitation is a common, treatable symptom that profoundly impacts quality of life and exacerbates caregiver fatigue in the hospice setting for patients with dementia. The objective of this study was to analyze the efficacy of tailored nonpharmacological interventions for mitigation of unwanted behaviors in the population of patients with behavioral and psychological symptoms in dementia while receiving hospice care. The 4-domain Pittsburgh Agitation Scale (PAS; Motor, Verbal, Aggressive, Resistance to Care) was used for multiple baseline and posttest measurements of agitation. Effectiveness of nonpharmacological interventions was evaluated using analysis of variance for repeated measures for the total PAS score. Motor agitation was the presenting problem with highest-rated severity compared with Verbal, Aggression, and Resistance to Care domains. Analysis of variance demonstrated no difference between baseline referral and pretest total PAS measures (P = .8), but a significant drop in total PAS agitation after intervention (P < .001). The best outcomes, however, were with patients receiving both nonpharmacological and standard pharmacological interventions as opposed to nonpharmacological interventions alone (P = .034). For patients with dementia presenting with behavioral and psychological symptoms, selected nonpharmacological interventions provide significant mitigation of agitation.
In this case report, an elderly patient with COVID-19 pneumonia and a protracted intensive care course, who was unable to wean from mechanical ventilation, was transferred to the hospice unit for ventilator withdrawal and end of life care. Although symptom management was anticipated to focus on treating acute dyspnea, conditions mandated a shift to addressing the psychological challenges associated with prolonged critical illness. The interventions typical to hospice care—patient centered, family focused, and culturally sensitive—served to alleviate psychological symptoms of demoralization and despair, contributing to an outcome that pointed beyond pulmonary pathophysiology. Thought to be facing imminent death once the ventilator was removed, this patient defied the science behind weaning protocols, which can only be explained by a “will to live,” through loving engagement with his family, his favorite music, and a dedicated multidisciplinary hospice team.
BACKGROUND: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans' knowledge of and attitudes toward hospice care and advance care planning.
PROCEDURES: A cross-sectional design was employed using surveys about participants' knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses.
RESULTS: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice.
CONCLUSIONS: This study's results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.
Older patients comprise the fastest growing population initiating dialysis. Many have coexisting conditions that affect their experience and survival. These patients spend their last days undergoing intensive therapies at a higher rate than with other life-limiting conditions. The majority of dialysis patients are hospitalized in their last month of life, where most will die. In our opinion, no population is more in need of quality end-of-life care than patients on dialysis.
BACKGROUND: Palliative sedation has been used to refer to the practice of providing symptom control through the administration of sedative drugs. The objective of this article was to characterise palliative sedation use in inpatients at a medium-stay palliative care unit.
MATERIAL AND METHODS: A cross-sectional study was conducted on 125 randomly selected patients (aged 15 or older) who had died in 2014. The Palliative Performance Scale was used to evaluate the functional status.
RESULTS: Palliative sedation was documented in 34.4% of the patients and midazolam was the most commonly used sedative agent (86.0%). More than half (53.5%) of those who recieved sedation presented with delirium. Liver dysfunction was more frequent in the sedated patients (p=0.033) and patients with heart disease were less likely (p=0.026) to be sedated.
CONCLUSION: Palliative sedation is an ethically accepted practice. It was commonly midazolam-induced, and differences were documented, among sedated and non-sedated patients, in terms of liver dysfunction and heart disease.
In Western society, the topic of death has been removed from everyday life and replaced with medical language. Such censorship does not reduce individuals' fear of death, but rather limits their ability to elaborate their experiences of death, thus generating negative effects. The objective of this follow-up qualitative study was to detect how and if death education can help to improve individuals' relationship with death and enhance care environments like hospices. Semi-structured interviews were conducted with palliative care professionals and teachers who had taken part in a death education initiative three years earlier. The results confirmed the initiative's positive effect on both palliative care professionals and teachers. The participants reported that the education initiative helped them to positively modify their perspective on death, end-of-life care, and their own relationship to life, as well as their perception of community attitudes towards the hospice, which seemed to become less discriminatory. This study confirmed that school education initiatives can usefully create continuity between hospices and local communities. This project provided an educational space wherein it was possible for participants to elaborate their experiences in relation to death and to re-evaluate and appreciate hospices.
CONTEXT: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.
OBJECTIVE: Examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common, distressing patient symptoms near the end of life.
METHODS: Secondary analysis of prospective, cohort study of 169 patients with advanced cancer and their family caregivers were analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g. home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
RESULTS: Hospice care was significantly, positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 versus 8.96; psychological responses: 29.85 versus 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and were associated with the most fear and helplessness among caregivers.
CONCLUSION: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to "scary" patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common, distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.
There is a disproportionate burden of illness and death among racial/ethnic minorities related to COVID-19. The importance of reaching groups suffering the most with resources such as advance directive guidance, telehealth, and culturally sensitive education materials is vital to providing quality, inclusive care. A crisis presents an opportunity to unite and problem-solve to help avoid the dire consequences facing inaction. In this way, inclusive responses by hospices, social workers, other community partners during the COVID-19 pandemic can help reach and alleviate the pain of those groups most afflicted. We offer hospice inclusion strategies that align with general pandemic response trends that may lead to greater hospice inclusion beyond this public health emergency.
CONTEXT: Although high quality research with patients and family members is needed to improve palliative care, difficulties in recruitment are often reported.
OBJECTIVES: The present article analyses the authors` experiences in recruiting participants of two types of dyads for the study 'Dy@EoL - Interaction at the end of life in dyads of parents and adult children'. Recruitment challenges and factors found to improve recruitment are examined.
METHODS: Between February 2018 and November 2019, the research team cooperated with diverse inpatient and ambulatory palliative and hospice care providers to recruit both dyads. Cooperation strategies and adaptations were protocolled. Data on (non-)participation were recorded and analysed using descriptive statistics.
RESULTS: The recruitment rate was 34.6% (dyad 1, terminally ill adult children with parents: 36.4%; dyad 2, terminally ill parents with adult children: 33.9%). In total, 82.2% of participants were recruited from inpatient settings. The research team has applied various strategies, such as public outreach activities and the extension of recruitment partners. The study protocol was adapted at an early stage to include single participants. Of all patients, 47.7% participated without their dyad partner. The main reason to exclude their family member was the patients' wish to protect them from extra burden.
CONCLUSION: The recruitment was more successful in inpatient than in ambulatory settings. The extension of recruitment partners was beneficial to recruit participants from ambulatory contexts. The inclusion of single participants was conducive as a great number of patients participated without their dyad partner. Sharing the obtained experiences can be helpful for future research planning.