Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
Que se passe-t-il dans notre cerveau lorsque nous passons de vie à trépas ? Pourquoi son activité persiste-t-elle parfois ? Et qu'est-ce que mourir, au fond ? Aussi étrange que cela paraisse, les frontières de la mort restent mal définies. Et pour cause : depuis la "résurrection" d'une pendue en 1650 et les électrisations de cadavres menées par Galvani, elles n'ont cessé d'être repoussées. Aujourd'hui, les nouveaux docteurs Frankenstein envisageraient même de greffer un corps pour prolonger la vie...
Après avoir lui-même frôlé la mort, l'auteur s'est passionné pour cette épopée scientifique. D'une plume acérée au contact des archives, il retrace l'histoire des physiologistes et des médecins qui ont pavé la voie aux découvertes actuelles. De laboratoires en hôpitaux, il nous conduit à la rencontre de ces morts au coeur battant, de cet alpiniste, indemne après neuf heures de réanimation cardiaque, de ces cerveaux sortis de leur crâne et toujours actifs, sans oublier les "revenants" d'une expérience de mort imminente (EMI).
Un récit époustouflant qui questionne notre condition humaine.
Une mère témoigne de la décision qui a été prise de faire don des organes de sa fille Alice, diagnostiquée d'une tumeur au cerveau en très bas âge mais qui a pu vivre jusqu'à ce jour où elle a été victime d'un fatal accident d'équitation. C'est en tout six vies qui ont pu être sauvées grâce à ce choix.
Background: Surrogate communication with providers about prognosis in the setting of acute critical illness can impact both patient treatment decisions and surrogate outcomes.
Objectives: To examine surrogate decision maker perspectives on provider prognostic communication after intracerebral hemorrhage (ICH).
Design: Semistructured interviews were conducted and analyzed qualitatively for key themes.
Setting/subjects: Surrogate decision makers for individuals admitted with ICH were enrolled from five acute care hospitals.
Results: Fifty-two surrogates participated (mean age = 54, 60% women, 58% non-Hispanic white, 13% African American, 21% Hispanic). Patient status at interview was hospitalized (17%), in rehabilitation/nursing facility (37%), deceased (38%), hospice (4%), or home (6%). Nineteen percent of surrogates reported receiving discordant prognoses, leading to distress or frustration in eight cases (15%) and a change in decision for potentially life-saving brain surgery in three cases (6%). Surrogates were surprised or confused by providers' use of varied terminology for the diagnosis (17%) (e.g., "stroke" vs. "brain hemorrhage" or "brain bleed") and some interpreted "stroke" as having a more negative connotation. Surrogates reported that physicians expressed uncertainty in prognosis in 37%; with physician certainty in 56%. Surrogate reactions to uncertainty were mixed, with some surrogates expressing a negative emotional response (e.g., anxiety) and others reporting understanding or acceptance of uncertainty.
Conclusions: Current practice of prognostic communication in acute critical illness has many gaps, leading to distress for surrogates and variability in critical treatment decisions. Further work is needed to limit surrogate distress and improve the quality of treatment decisions.
Background: Palliative care (PC) is an essential component of comprehensive care of patients with intracerebral hemorrhage (ICH). In the present study, we sought to characterize the variability of PC use after ICH among US hospitals.
Methods: ICH admissions from hospitals with at least 12 annual ICH cases were identified in the Nationwide Inpatient Sample between 2008 and 2011. We used multilevel logistic regression modeling to estimate between-hospital variance in PC use. We calculated the intraclass correlation coefficient (ICC), proportional variance change, and median OR after accounting for individual-level and hospital-level covariates.
Results: Among 26,791 ICH admissions, 12.5% received PC (95% CI 11.5-13.5). Among the 629 included hospitals, the median rate of PC use was 9.1 (interquartile range 1.5-19.3) per 100 ICH admissions, and 150 (23.9%) hospitals had no recorded PC use. The ICC of the random intercept (null) model was 0.274, suggesting that 27.4% of the overall variability in PC use was due to between-hospital variability. Adding hospital-level covariates to the model accounted for 25.8% of the between-hospital variance observed in the null model, with 74.2% of between-hospital variance remaining unexplained. The median OR of the fully adjusted model was 2.62 (95% CI 2.41-2.89), indicating that a patient moving from 1 hospital to another with a higher intrinsic propensity of PC use had a 2.63-fold median increase in the odds of receiving PC, independent of patient and hospital factors.
Conclusions: Substantial variation in PC use after ICH exists among US hospitals. A substantial proportion of this between-hospital variability remains unexplained even after accounting for patient and hospital characteristics.
Introduction: The purpose of this article is to report our institution's 10-year experience on palliative radiotherapy for the treatment of leptomeningeal carcinomatosis (LC), assessing survival, neurologic outcome, and prognostic factors.
Patients and methods: We retrospectively analyzed 110 patients who received palliative radiotherapy for LC between 2008 and 2018. The most common histologies were breast cancer (n = 43, 39.1%) and non-small cell lung cancer (NSCLC) (n = 31, 28.2%). Radiotherapy was administered as whole-brain radiotherapy (WBRT) (n = 51, 46.4%), focal spinal RT (n = 11, 10.0%) or both (n = 47, 42.7%). Twenty-five patients (22.7%) were selected for craniospinal irradiation. Clinical performance and neurologic function were quantified on the neurologic function scale (NFS) before and in response to therapy. A Cox Proportional Hazards model with univariate and multivariate analysis was fitted for survival.
Results: Ninety-eight patients (89.1%) died and 12 (10.9%) were alive at the time of analysis. Median OS from LC diagnosis and from the beginning of RT was 13.9 weeks (IQR: 7.1–34.0) and 9.9 weeks (IQR: 5.3–26.3), respectively. In univariate analysis, prognostic of longer OS were a Karnofsky performance scale index (KPI) of =70% (HR 0.20, 95%-CI: [0.13; 0.32], p < 0.001), initially moderate neurological deficits (NFS =2) (HR 0.32, 95% CI: [0.19; 0.52], p < 0.001), symptom response to RT (HR 0.41, 95%-CI: [0.26; 0.67], p < 0.001) and the administration of systemic therapy (HR 0.51, 95%-CI: [0.33; 0.78], p = 0.002). Prognostic of inferior OS were high-grade myelosuppression (HR 1.78, 95% CI: [1.06; 3.00], p = 0.03) and serum LDH levels >500 U/l (HR 3.62, 95% CI: [1.76; 7.44], p < 0.001). Clinical performance, symptom response and serum LDH stayed independently prognostic for survival in multivariate analysis. RT was well-tolerated and except for grade III myelosuppression in 19 cases (17.3%), no high-grade acute toxicities were observed. Neurologic symptom stabilization was achieved in 83 cases (75.5%) and a sizeable improvement in 39 cases (35.5%).
Conclusion: Radiotherapy is a well-tolerated and efficacious means of providing symptom palliation for patients with LC, delaying neurologic deterioration while probably not directly influencing survival. Prognostic factors such as clinical performance, neurologic response and serum LDH can be used for patient stratification to facilitate treatment decisions.
Dans le jardin japonais de Buenos Aires, en marge d’une réunion du G7, Bruno Le Maire voit revenir le souvenir de son ami Paul, emporté quelques semaines plus tôt par une tumeur au cerveau. Il se rappelle ses conseils, ses convictions, ses espoirs, ses encouragements, son courage face à la maladie. Bruno Le Maire retrace les mois de cette amitié soudaine, avec sa tendresse et ses divergences. Il montre comment la littérature, la musique et les conseils de Paul ont accompagné son engagement politique. Ce récit est aussi un hommage à la dignité humaine et un témoignage bouleversant sur la fin de vie.
PURPOSE: We describe the frequency and timing of withdrawal of life-support (WLS) in moderate or severe hypoxic-ischemic encephalopathy (HIE) and examine its associations with medical and sociodemographic factors.
PROCEDURES: We undertook a secondary data analysis of a prospective multicenter data registry of regional level IV Neonatal Intensive Care Units participating in the Children's Hospitals Neonatal Database. Infants =36 weeks gestational age with HIE admitted to a Children's Hospitals Neonatal Database Neonatal Intensive Care Unit between 2010 and 2016, who underwent therapeutic hypothermia were categorized as (1) infants who died following WLST and (2) survivors with severe HIE (requiring tube feedings at discharge).
RESULTS: Death occurred in 267/1,925 (14%) infants with HIE, 87.6% following WLS. Compared to infants with WLS (n = 234), the survived severe group (n = 74) had more public insurance (73% vs 39.3%, P = 0.00001), lower household income ($37,020 vs $41,733, P = 0.006) and fewer [20.3% vs 35.0%, P = 0.0212] were from the South. Among infants with WLS, electroencephalogram was performed within 24 hours in 75% and was severely abnormal in 64% cases; corresponding rates for MRI were 43% and 17%, respectively. Private insurance was independently associated with WLS, after adjustment for HIE severity and center.
CONCLUSIONS: In a multicenter cohort of infants with HIE, WLS occurred frequently and was associated with sociodemographic factors. The rationale for decision-making for WLS in HIE require further exploration.
Purpose: To assess the incremental cost associated with the management of patients with primary non-squamous non-small cell lung cancer (NSCLC) with brain metastases at the time of diagnosis.
Methods: Data were extracted from the French Hospital medical information database (Programme de Médicalisation des Systèmes d'Information (PMSI)). Patients with non-squamous NSCLC were identified through a diagnosis of lung cancer and a prescription of bevacizumab or pemetrexed. All such patients hospitalised with lung cancer for the first time in 2013 and with metastases identified at the first hospitalisation were eligible. Two cohorts were identified, one with brain metastases (group B: n=971) and one with metastases at other sites (group A: n=1529). For each patient, total in-hospital medical resource consumption associated with the initial hospitalisation in 2013 and with any follow-up stays in the following 24 months was documented. Costs were attributed from official French national tariffs and expressed in 2017 euros.
Results: The mean number of hospitalisations per patient in the 24-moth follow-up period was 17 in group A and 21 in group B. >99% of patients in both groups received chemotherapy. 58% of patients in group B and 13% in group A were managed by radiotherapy. 37% in group B and 24% in group A received palliative care. The associated cost was €2979 per patient-month for patients in group B and €2426 for patients in group A, representing a differential cost of €553 per month. Radiotherapy (+€164/month) and palliative care (+€130/month) were the principal drivers of the incremental cost.
Conclusions: The presence of brain metastases at the time of diagnosis of non-squamous NSCLC carries a significant burden, and ways of lowering this burden are needed.
"Tumeur changeante" est le récit d'un accompagnant qui relate le combat mené par Sylvie, une jeune mère de famille de 38 ans atteinte d'une tumeur au cerveau. Une maladie qui va bouleverser son quotidien et celui de sa petite famille entraînée avec elle dans la spirale de l'isolement. Une solitude qui va remettre en cause les rapports qu'elle entretenait jusqu'alors avec la Médecine, la Religion et la Société. Une société où l'indifférence des uns est compensée par l'empathie des autres.
BACKGROUND: Decisions to limit care, including use of a do-not-resuscitate (DNR) order, are associated with increased risk of death after intracerebral hemorrhage (ICH). Given the value that patient surrogates place on the physician's perception of prognosis, understanding prognostic indicators that influence clinical judgment of outcomes is critical.
OBJECTIVE: The purpose of this study was to understand the patient variables and comorbid illnesses associated with DNR orders placed on patients within 72 hours after ICH.
DESIGN: Single-center, retrospective review of medical records of 198 consecutive patients with an admission diagnosis of primary supratentorial ICH between July 2007 and December 2010.
SUBJECTS: Patients who did not experience a DNR order placement during their primary admission for ICH (non-DNR group) were compared to patients who received a new DNR order in the first 72 hours of admission (DNR group).
MEASUREMENTS: Patient characteristics obtained include demographic data, past medical history, clinical data pertaining to the admission for the ICH, and radiographic images. Demographic, medical, and ICH injury data during the first three days of admission were collected.
RESULTS: Multiple differences in patient and hospital factors were found between patients receiving a new, early DNR order and those who did not receive a DNR order after ICH. In regression modeling, Caucasian race, direct admission, and higher ICH score were associated with placement of a new DNR order early in the course of injury.
CONCLUSIONS: Race, transfer procedures, and injury severity may be important factors associated with placement of new, early DNR orders in patients after ICH.
Surgical-site infection, spinal cord abscess, and catheter tip granuloma are known but rare complications of intrathecal drug delivery systems (IDDS). To date, there are no published cases of brain abscess in a patient with an IDDS. In this study, we report a case of a cancer patient with an IDDS for management of cancer pain who developed a brain abscess with profound mental status changes and clinical management challenges.
OBJECTIVE: Restoring the circulation is the primary goal in emergency treatment of cerebral ischemia. However, better understanding of how the brain responds to energy depletion could inform the time available for resuscitation until irreversible damage and advance development of interventions that prolong this span. Experimentally, injury to central neurons begins only with anoxic depolarization. This potentially reversible, spreading wave typically starts 2-5 min after the onset of severe ischemia, marking the onset of a toxic intraneuronal change that eventually results in irreversible injury.
METHODS: To investigate this in the human brain, we performed recordings with either subdural electrode strips (n=4) or intraparenchymal electrode arrays (n=5) in patients with devastating brain injury that resulted in activation of a Do Not Resuscitate-Comfort Care order followed by terminal extubation.
RESULTS: Withdrawal of life-sustaining therapies produced a decline in brain tissue partial pressure of oxygen (pti O2 ) and circulatory arrest. Silencing of spontaneous electrical activity developed simultaneously across regional electrode arrays in eight patients. This silencing, termed 'nonspreading depression', developed during the steep falling phase of pti O2 (intraparenchymal sensor, n=6) at 11 (7, 14) mmHg. Terminal spreading depolarizations started to propagate between electrodes 3.9 (2.6, 6.3) min after onset of the final drop in perfusion and 13 to 266s after nonspreading depression. In one patient, terminal spreading depolarization induced the initial electrocerebral silence in a spreading depression pattern; circulatory arrest developed thereafter.
INTERPRETATION: These results provide fundamental insight into the neurobiology of dying and have important implications for survivable cerebral ischemic insults.
Using existing prognostic models, including the Graded Prognostic Assessment (GPA), it is difficult to identify patients with brain metastases (BMs) who are not likely to survive 2 months after whole-brain radiotherapy (WBRT). The purpose of this study was to identify a subgroup of patients who would not benefit clinically from WBRT. We retrospectively reviewed the records of 111 patients with BMs who were ineligible for surgery or stereotactic irradiation and who underwent WBRT between March 2013 and April 2016. Most patients were scheduled to receive a total dose of 30 Gy in 10 fractions. Non-small cell lung cancer represented the most common primary cancer type (67%), followed by breast cancer (12%). Median survival time (MST) was 109 days (range, 4-883). Univariate analysis identified five factors significantly associated with poor prognosis: performance status (PS) 2-4, perilesional edema, elevated serum lactate dehydrogenase (LDH), using steroids during WBRT, and presence of hepatic metastases. Multivariate analysis confirmed elevated LDH (>300 IU/l) as an independent predictor. MST for LDH >300 IU/l (n = 30) and LDH =300 IU/L (n = 87) cohorts were 47 days and 148 days, respectively (P < 0.001). MSTs for GPA 0–1 patients (n = 85) with and without elevated LDH were 37 days and 123 days, respectively (P < 0.001). More than half of the patients with GPA 0–1 and elevated LDH died within two months. Adding elevated LDH to the GPA will permit identification of patients with BMs who have extremely unfavorable prognoses.
Patients who have brain metastases can suffer from a medley of symptoms, including headaches, seizures, cognitive impairment, fatigue, and focal deficits. As therapies have evolved, so has the management of these symptoms as patients survive longer. This chapter focuses on the clinical presentation of brain metastases, the treatment of those symptoms, and palliation in end-of-life management. Brain metastases are the most common cerebral malignancy. They can present with various symptoms, which can have significant impact on patients' quality of life throughout the course of their disease. Most of these symptoms are related to direct brain compression from the tumor or from edema. The location of the metastases will determine the focal deficits incurred and most patients will be on a course of steroids tapered according to their clinical status. The chapter includes a list of potential side-effects and considerations for management. Palliative care is an essential and important part of approaching patients with metastases. Early and clear communication about end-of-life decision making is encouraged with multiple easily accessible tools. For patients near the end of life, comfort is the ultimate goal in providing a good quality of life.
Background: Deceased-related thinking is central to grieving and potentially critical to processing of the loss. Self-report measurements might fail to capture important elements of deceased-related thinking and processing. Here, we used a machine learning approach applied to fMRI - known as neural decoding - to develop a measure of ongoing deceased-related processing.
Methods: 23 subjects grieving the loss of a first-degree relative, spouse or partner within 14 months underwent two fMRI tasks. They first viewed pictures and stories related to the deceased, a living control and a demographic control figure while providing ongoing valence and arousal ratings. Second, they performed a 10-minute Sustained Attention to Response Task (SART) with thought probes every 25-35 seconds to identify deceased, living and self-related thoughts.
Results: A conjunction analysis, controlling for valence/arousal, identified neural clusters in basal ganglia, orbital prefrontal cortex and insula associated with both types of deceased-related stimuli vs. the two control conditions in the first task. This pattern was applied to fMRI data collected during the SART, and discriminated deceased-related but not living or self-related thoughts, independently of grief-severity and time since loss. Deceased-related thoughts on the SART correlated with self-reported avoidance. The neural model predicted avoidance over and above deceased-related thoughts.
Conclusions: A neural pattern trained to identify mental representations of the deceased tracked deceased-related thinking during a sustained attention task and also predicted subject-level avoidance. This approach provides a new imaging tool to be used as an index of processing the deceased for future studies of complicated grief.
Charlie est un adolescent très brillant qui est au lycée scientifique de Brighton aux Etats-Unis. Son rêve est d'intégrer le MIT. Il n'est pas à l'aise dans ses relations aux autres, et notamment avec les filles. Jusqu'au jour où il rencontre Charlotte dans un supermarché et il tombe amoureux d'elle. Il est prêt à tout pour elle, quitte à attirer la colère de ses professeurs. Charlie découvre bientôt le secret de Charlotte : elle est atteinte d'un cancer du cerveau en phase terminale. Pour lui commence une période difficile où il est pris entre son amour pour la jeune fille et la peur de sa mort.
Les auteurs ont développé un projet multidisciplinaire de soutien pour les proches de patients souffrant de tumeurs cérébrales malignes. Ce projet aborde les principaux éléments de la maladie, du diagnostic à la fin de vie. Il a pour objectif d'impliquer davantage les proches dans la prise en charge, en leur donnant un sentiment de sécurité, afin d’améliorer concrètement leur vie quotidienne et indirectement celle des patients.
Basées sur l’expertise d’une équipe multidisciplinaire et sur les témoignages d’aidants se plaignant d’un manque d’informations, notamment en ce qui concerne la gestion au domicile des handicaps neurologiques, les séances de soutien ont fait l’objet d’enregistrements, relayés en ligne sur le site Internet de l'association.
Les retours concernant ce programme sont très favorables et la très grande majorité des participants en a rapporté un impact positif sur leur vie.
L'argumentation de l'auteur s'organise autour de trois thèmes : la mort, un phénomène biologique général des organismes vivants ; le cerveau de l'homme, la conscience de sa mort et de la mort d'autrui ; les mythologies de la mort, des sociétés sans écritures aux religions du Livre.