Background: Early referral of cancer patients for palliative care significantly improves the quality of life. It is not clear which patients can benefit from an early referral, and when the referral should occur. A Delphi Panel study proposed 11 major criteria for an outpatient palliative care referral.
Objective: To operationalize major Delphi criteria in a cohort of lung cancer patients, using a prospective approach, by linking health administrative data.
Design: Population-based observational cohort study.
Setting/Subjects: The study population comprised 38,851 cases of lung cancer in the Ontario Cancer Registry, diagnosed from January 1, 2012, to December 31, 2016.
Measurements: We operationalized 6 of the 11 major criteria (4 diagnosis or prognosis based and 2 symptom based). Patients were considered eligible (index event) for palliative care if they qualified for any criterion. Among eligible patients, we identified those who received palliative care.
Results: Twenty-eight thousand one hundred sixty-four patients were eligible for palliative care by qualifying for either the diagnosis- or prognosis-based criteria (n = 21,036, 76.5%), or for symptom-based criteria (n = 7128, 23.5%). A total of 23,199 (82.4%) patients received palliative care. The median time from palliative care eligibility to the receipt of first palliative care or death or maximum study follow-up was 56 days (range = 17–348).
Conclusions: We operationalized six major criteria that identified the majority of lung cancer patients who were eligible for palliative care. Most eligible patients received the palliative care before death. Future research is warranted to test these criteria in other cancer populations.
BACKGROUND: Patient shadowing is an experiential technique intended to enable those who shadow to understand care experience from the patient's point of view. It is used in quality improvement to bring about change that focuses on what is important for patients.
AIM: To explore the acceptability of patient shadowing for health-care staff, the impact of the experience and subsequent motivations to make improvements.
METHOD: A qualitative study with a diverse sample of 20 clinical and non-clinical health-care staff in different end-of-life settings. Data were analysed thematically.
RESULTS: Anticipated anxieties about shadowing did not materialize in participant accounts, although for some it was a deeply emotional experience, intensified by being with patients who were at the end of life. Shadowing not only impacted on participants personally, but also promoted better insights into the experience of patients, thus focusing their improvement efforts. Participants reported that patients and families who were shadowed welcomed additional caring attention.
CONCLUSION: With the right preparation and support, patient shadowing is a technique that engages and motivates health-care staff to improve patient-centred care.
OBJECTIVE: The positive impact of early palliative care interventions in advanced cancer patients has so far been largely evaluated in randomised controlled trials. This study aimed at providing information on the value of early palliative/supportive care, integrated with standard oncologic care, in a real-life setting.
METHODS: This was a retrospective observational study of 292 advanced cancer patients consecutively admitted at Carpi Hospital in Modena, Italy, between 2014 and 2017. For the purpose of this analysis, patients were classified into two groups (early and delayed palliative/supportive care patients), and analysed for different clinical indicators. Early and delayed palliative/supportive care were classified according to the time elapsed from advanced cancer diagnosis until palliative/supportive care start.
RESULTS: A total of 200 patients (68%), with at least three visits, were included in the analyses. The frequency of chemotherapy use in the last 60 days of life was 3.4% and 24.6% in the early and delayed groups, respectively (adjusted OR=0.1; 95% CI 0.0 to 0.4; p=0.002). The estimated survival probability at 1 year was 74.5% (95% CI 65.0% to 85.4%) and 45.5% (95% CI 37.6% to 55.0%), in the early and delayed groups, respectively. Performance status, pain and all the Edmonton Symptom Assessment Scale items, assessed at baseline and at 1 to 12 weeks after the intervention, showed significant improvement over time. However, no between-group differences were found with regard to symptom outcomes.
CONCLUSIONS: An earlier palliative/supportive care intervention was associated with reduced aggressiveness of therapy, in patients receiving community oncology care. Symptom burden was improved by early palliative/supportive care, independently of the timing of patient referral.
While shadowing is a relatively common practice in the education of many health professionals, it is not widely used in chaplaincy education. Findings from our qualitative study of 12 chaplains who participated in the Coleman Palliative Medicine Training Program suggest it may offer benefits for practicing chaplains. In interviews with seven fellows who shadowed more experienced palliative care (PC) chaplains and the five mentors who were shadowed at their work settings, participants reported opportunities for mutual learning, self-reflection, and collegiality. Fellows observed how members of a PC team collaborate and contribute equally to the care of patients. Mentors found shadowing was a rare opportunity to share their chaplaincy practice with colleagues. It helped them to appreciate different aspects of their work settings and to distinguish between PC and generalist chaplaincy. We discuss the challenges participants experienced while shadowing and offer recommendations for incorporating the practice more widely into chaplaincy education.
Background : Limited information is available regarding the detailed clinical patterns of palliative sedation (PS), i.e., the symptom control rate, salvage medication, and the effectiveness of intermittent PS (IPS) versus continuous PS (CPS).
Objectives : The primary aim was to investigate clinical outcomes of PS in a real clinical setting.
Methods : Clinical information was prospectively collected for patients who were treated according to a prescribed protocol and assessment tools in a hospice unit affiliated with a tertiary cancer center between September 2015 and March 2017. Data were analyzed retrospectively. Midazolam was used as the first medication for PS, and propofol and phenobarbital were subsequently used as salvage medications. Indications of PS, the depth of sedation, the quality of sleep, and the level of consciousness were assessed.
Results : A total of 306 patients were enrolled, 89 of whom (29.1%) received PS. No difference in survival time was found between patients with and without PS (median survival, 34.0 vs 25.0 days, p=0.109). Delirium was the most common indication of PS. The symptoms of 73 (82.0%) of 89 patients with PS were relieved with midazolam. Twelve (75.0%) of 16 midazolam-failure patients responded to propofol, 5 of whom (31%) exhibited respiratory depression. Of the 89 patients receiving PS, 61 (68.5%) received IPS and 28 patients (31.5%) received CPS. The median survival times from PS initiation to death were 6 days in the IPS group and 1 day in the CPS group (p<0.001). Interestingly, consciousness levels were significantly improved after IPS in the delirium group compared with those in the other group (41.7% vs 16.7%, p=0.002).
Conclusion : The refractory symptoms of end-of-life cancer patients can ultimately be relieved with various medications for PS. IPS may improve the consciousness level of patients with delirium.
BACKGROUND: Access to hospice palliative care may improve quality of life, reduce the use of potentially aggressive end-of-life care and allow for death to occur outside of an acute care hospital. The aim of this study was to examine the impact of an ambulatory hospice palliative care program on end-of-life care compared to care received by a matched control group of deceased patients.
METHODS: This retrospective study included patients who received hospice palliative care through the Symptom Management Program in Sudbury, Ontario, during 2012-2015. Using linked administrative health records, we defined a propensity-matched control group and derived 4 previously defined variables associated with aggressive end-of-life care (chemotherapy received in the last 2 wk of life, > 1 emergency department visit within 30 d of death, > 1 hospital admission within 30 d of death and at least 1 intensive care unit admission within 30 d of death). We also examined place of death. We measured family/caregiver satisfaction with care 3 months after the patient's death using the FAMCARE questionnaire.
RESULTS: Of 914 eligible decedents enrolled in the Symptom Management Program, 754 (82.5%) were matched. Receiving care through the program was protective for most measures of aggressive end-of-life care (absolute risk reduction [ARR] 12.73, 95% confidence interval [CI] 12.65-12.81 for any end-of-life care outcome) and death in an acute care setting (ARR 19.89, 95% CI 19.78-20.00). Of the 450 family caregivers invited to complete the FAMCARE questionnaire, 190 (42.2%) returned completed surveys; following data linkage and matching, 96 (21.3%) were available for analysis. Satisfaction with care received within the program appeared high (mean total score 85.72/100).
INTERPRETATION: Provision of hospice palliative care through this ambulatory program was associated with lower use of aggressive end-of-life care and death outside of an acute care hospital. Improving access could be expected to provide positive benefits at the individual and system level.
A positive youth development perspective focuses on recognizing psychosocial strengths and providing social environments that contribute to the development of these in children and adolescents. Bereavement camps can provide such an environment as they help children cope with the death of someone close. The purpose of this study was to observe bereavement camps through the lens of positive youth development to determine the applicability of the eight features of positive developmental settings for describing bereavement camps (safety, appropriate structure, supportive relationships, opportunities to belong, positive norms, support for efficacy, skill building opportunities, integration of family and community). Observational notes were recorded by researchers during on-site visits to three different weekend bereavement camps. Results identified how each element of positive developmental settings was exemplified in either typical camp activities or bereavement-focused activities. For example, assigning campers to cabin groups based on age and gender provided opportunities to belong, and giving campers a comfort object and a big buddy provided supportive relationships. Findings were used to create a positive developmental settings observation checklist for use by bereavement camp practitioners to assess the extent to which each camp provides the requisite elements for promoting positive youth development.
Objectif : Les bénéfices de la ventilation non invasive (VNI) sont démontrés en pédiatrie. En soins palliatifs (SP) plusieurs études ont montré son impact positif. L’objectif de cette étude était de recueillir l’opinion et l’expérience des pneumo-pédiatres, médecins de SP et réanimateurs pédiatres français sur l’utilisation de la VNI en SP.
Méthode : Une enquête observationnelle multicentrique a été réalisée en février et mars 2015 grâce à un questionnaire envoyé à 186 praticiens.
Résultats : En cas de détresse respiratoire aiguë (DRA), la VNI était jugée raisonnable par 84 % des praticiens pour un enfant à ne pas intuber et par 35 % pour un enfant bénéficiant uniquement de mesures de confort (p<0,0001). En cas de symptômes d’insuffisance respiratoire chronique (IRC), la VNI était jugée raisonnable par 68 % des praticiens chez un enfant à ne pas intuber et par 30 % si l’enfant bénéficiait uniquement de mesures de confort (p<0,05). La dyspnée a été classée principale indication de VNI en SP. Les critères d’efficacité retenus étaient principalement cliniques : confort et satisfaction de l’enfant et de sa famille. L’hypercapnie et la baisse de la saturation pulsée en oxygène (SpO2) étaient peu utilisées comme indication ou marqueur d’efficacité de VNI. Une directive anticipée de recours à la VNI a été rapportée par 60 % des praticiens.
Conclusion : Les pédiatres français ont recours à la VNI en SP et ils considèrent ce traitement raisonnable pour les enfants à ne pas intuber. Les indications et critères d’efficacité sont essentiellement cliniques dans ce contexte.
Purpose of review: In comparison with patients who have other serious illnesses, patients with advanced kidney disease have a higher rate of intensive care utilization at the end of life and receive palliative care less frequently. Consensus and clinical practice guidelines have therefore recommended the incorporation of palliative care earlier in the disease trajectory. This review summarizes recent literature on this aspect of care and will highlight future directions for patient-centered care within palliative nephrology.
Recent findings: Patients with advanced kidney disease and their families frequently do not engage effectively with their clinicians to make informed treatment decisions or plan for care at the end of life. Furthermore, racial and ethnic minority patients continue to receive a lower rate of palliative care services compared to other racial groups. Interventions that promote better palliative care communication and education among nephrology clinicians, patients and their families are becoming increasingly more common in nephrology.
Summary: Overall, improved understanding of the unique care needs of patients with advanced and end-stage kidney disease provides a solid foundation to improve palliative and end-of-life care delivery among diverse populations in nephrology.
Symptom management is the cornerstone of hospice and palliative care and begins with a comprehensive assessment. Patient self-report remains the gold standard to determine symptom presence and intensity along with its impact on functional status and quality of life. However, patients often lose the ability to communicate over the course of a progressive illness whether transiently from the development of delirium or an ICU stay with mechanical ventilation or more permanently as a consequence of a cerebrovascular event or progressive neurodegenerative disorder (e.g. dementia).
Background: Fatigue is one of the most common symptoms found in patients with advanced cancer. There is interplay between fatigue and other symptoms.
Aim: To examine the factors associated with fatigue in patients with advanced cancer and the impact of symptom control on improvement in fatigue.
Design: Prospective observational study. Patients were assessed for symptom burden using the Edmonton Symptom Assessment Scale (ESAS). All the study patients received standard palliative care. They were followed up 15–30 days after the first consult. Analysis of the results was performed using descriptive statistics, correlation, multiple linear regressions and logistic regression of fatigue with other variables. CTRI registration number REF/2014/02/006537.
Setting/participants: Palliative Care clinic of a tertiary cancer care hospital, from January to June 2014. Patients had advanced cancer, were registered with the clinic, had ECOG <= 3, and ESAS fatigue score >= 1.
Results: 500 subjects enrolled at baseline. 402 completed the planned follow-up (median age, 52 years; 51.6% male). Significant improvement in the fatigue score was observed (p < 0.001) at follow-up. Haemoglobin, albumin levels, type of cancer, sites of metastasis, ECOG score, body weight, all items on ESAS scale (except drowsiness) were found to be significantly associated with fatigue at baseline (p < 0.05). The logistic regression model showed that improvement in haemoglobin and albumin levels and in severity of pain and dyspnoea, significantly improved fatigue scores at follow up.
Conclusions: Fatigue improved with the standard palliative care delivered at our specialty Palliative Care clinic. Certain clinical, biochemical factors and symptoms were associated with fatigue severity at baseline, improvement of which lead to lesser fatigue at follow up.
En Italie, les auteurs ont examiné la prévalence et l'intensité de la douleur associées à six procédures de soins communément effectuées en unité de soins palliatifs. L'article résume leur étude.
En soins palliatifs, il serait nécessaire de se référer à un modèle. Pourtant, il semble qu'il n'y ait pas de déclarations officielles qui posent et décrivent un modèle des bonnes pratiques et éthique des soins palliatifs prenant en considération toutes les dimensions des soins de fin de vie. L'article présente une étude conduite sur les documents de référence de trente quatre établissements opérant au niveau national dans quatre pays (Australie, Canada, Grande-Bretagne, Etats-Unis) et pointe qu'en l'absence d'un modèle intégré et cohérent pour servir de base de travail, le personnel en soin palliatif adapte une pratique de soins aux besoins spécifiques et aux valeurs de chaque patient.
La mort d’un enfant dans notre service de pédiatrie générale survient plusieurs fois par an, le plus souvent dans la continuité d’une prise en charge de proximité curative, puis palliative de plusieurs semaines. Il s’agit toujours d’une période de grande interrogation sur notre rôle de soignant, notre place autour de l’enfant et sa famille. La réflexion collégiale mise en place précocement dans ces situations difficiles aide au partage de l’expérience, à l’adaptation des soins, au soutien moral de l’équipe.
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Cette étude observationnelle, comparative et rétrospective incluant l'ensemble des séjours codés "soins palliatifs" de sept services du CHU de Saint-Etienne a pour but d'apprécier l'impact de l'admission en lits identifiés de soins palliatifs (LISP), sur la prise en charge de patients en fin de vie. Une comparaison a été effectuée entre les séjours LISP et les séjours en lits conventionnels. Selon les résultats présentés dans cet article, la démarche palliative paraît plus développée voire améliorée dans le groupe LISP grâce à une plus grande pluridisciplinarité.
La dissection aiguë de l'aorte représente une cause rare de mort subite d'origine cardiaque chez le sujet jeune. Elle survient essentiellement chez des victimes atteintes d'affections dystrophiques héréditaires ou congénitales. Nous rapportons 4 observations de dissection aortique fatale, de découverte autopsique, survenue chez des sujets jeunes âgés entre 17 et 22 ans et dont l'autopsie a été effectuée au service de médecine légale de Tunis. Dans trois cas, les victimes sont atteintes d'un syndrome de Marfan et le 4e cas a concerné un jeune porteur d'une coarctation de l'aorte associée à une bicuspidie aortique. Nous discutons à travers ces cas les aspects particuliers de la dissection aortique chez les sujets jeunes, les différentes étiologies et les mesures de prévention nécessaires.
Origine : BDSP. Notice produite par INIST-CNRS mFnFR0xH. Diffusion soumise à autorisation
Cette étude observationnelle, comparative et rétrospective, a pour but d'appréhender l’impact de l’admission en lits identifiés soins palliatifs (LISP), sur la prise en charge de patients en fin de vie. En incluant l'ensemble des séjours codés "soins palliatifs", les auteurs ont comparé dans sept services du CHU de Saint-Étienne les séjours en LISP et en lits conventionnels.
En France, le nombre de décès des enfants de moins de 4 ans reste encore élevé et, fait troublant, le taux annuel de décès de cause inconnue ou inexpliquée et de décès dits accidentels est constant depuis de nombreuses d'années. Ces décès font rarement l'objet d'une autopsie médicolégale ou scientifique. Or cet acte médical nous paraît indispensable pour répondre aux multiples questions pouvant se poser tant, d'ordre privé que public (santé publique, prévention, judiciaire, voire institutionnelle). Nous présentons 2 observations soulevant ces questions dans le contexte d'accident de la vie privée. Dans la première, le décès avait conduit à la constatation d'un obstacle médicolégal à l'inhumation et à une autopsie médicolégale. Les résultats de l'autopsie avaient donné des réponses, tant aux parents qu'à la justice. La seconde observation concernait un enfant pris en charge dans le cadre du protocole des morts inattendues du nourrisson. L'autopsie n'avait pas été consentie par les parents et aucune réponse sur les causes du décès n'avait pu être apportée. Ces 2 observations soulignent toute l'importance et l'utilité de cet acte médical.
Origine : BDSP. Notice produite par INIST-CNRS EEppR0xH. Diffusion soumise à autorisation
En plus de son savoir et de son savoir faire, l'infirmière doit ausssi développer son savoir être tant avec elle-même qu'avec le patient, savoir-être sans lequel la notion de croissance personnelle restera inopérante pour l'un et l'autre.
L'ouvrage se divise en 2 niveaux d'approche. Le premier constitue une introduction pour les novices en relation d'aide, et le deuxième reprend les mêmes dimensions mais traitées cette fois plus en profondeur. L'apprentissage de ces éléments théoriques sera intégré au moyen de situations fictives proposées à la fin de chaque exposé traitant des différentes dimensions de la relation d'aide, aussi bien en deuxième qu'en première approche.