OBJECTIVE: To investigate whether less invasive methods of autopsy would be acceptable to bereaved parents and likely to increase uptake.
DESIGN: Mixed methods study.
SETTING: Bereaved parents recruited prospectively across seven hospitals in England and retrospectively through four parent support organisations.
SAMPLE: Eight hundred and fifty-nine surveys and 20 interviews with bereaved parents.
METHODS: Cross-sectional survey and qualitative semi-structured telephone interviews.
MAIN OUTCOME MEASURES: Likely uptake, preferences, factors impacting decision-making, views on different autopsy methods.
RESULTS: Overall, 90.5% of participants indicated that they would consent to some form of less invasive autopsy [either minimally invasive autopsy (MIA), non-invasive autopsy (NIA) or both]; 53.8% would consent to standard autopsy, 74.3% to MIA and 77.3% to NIA. Regarding parental preferences, 45.5% preferred MIA, 30.8% preferred NIA and 14.3% preferred standard autopsy. Participants who indicated they would decline standard autopsy but would consent to a less invasive option were significantly more likely to have a lower educational level (odds ratio 0.49; 95% CI 0.35-0.70; P = 0.000062). Qualitative findings suggest that parents value NIA because of the lack of any incision and MIA is considered a good compromise as it enables tissue sampling while easing the parental burden associated with consenting to standard autopsy.
CONCLUSION: Less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience. Further health economic, validation and implementation studies are now required to assess the viability of offering these in routine widespread clinical care.
OBJECTIVE: This observational study explores the association between palliative care (PC) involvement and high-cost imaging utilisation for patients with cancer patients during the last 3 months of life.
METHODS: Adult patients with cancer who died between 1 January 2012 and 31 May 2015 were identified. Referral to PC, intensity of PC service use, and non-emergent oncological imaging utilisation were determined. Associations between PC utilisation and proportion of patients imaged and mean number of studies per patient (mean imaging intensity (MII)) were assessed for the last 3 months and the last month of life. Similar analyses were performed for randomly matched case-control pairs (n = 197). Finally, the association between intensity of PC involvement and imaging utilisation was assessed.
RESULTS: 3784 patients were included, with 3523 (93%) never referred to PC and 261 (7%) seen by PC, largely before the last month of life (61%). Similar proportions of patients with and without PC referral were imaged during the last 3 months, while a greater proportion of patients with PC referral were imaged in the last month of life. PC involvement was not associated with significantly different MII during either time frame. In the matched-pairs analysis, a greater proportion of patients previously referred to PC received imaging in the period between the first PC encounter and death, and in the last month of life. MII remained similar between PC and non-PC groups. Finally, intensity of PC services was similar for imaged and non-imaged patients in the final 3 months and 1 month of life. During these time periods, increased PC intensity was not associated with decreased MII.
CONCLUSIONS: PC involvement in end-of-life oncological care was not associated with decreased use of non-emergent, high-cost imaging. The role of advanced imaging in the PC setting requires further investigation.
Background: Routine imaging (“scan”) results contain key prognostic information for advanced cancer patients. Yet, little is known about how accurately patients understand this information, and whether psychological states relate to accurate understanding.
Objective: To determine if patients' sadness and anxiety, as well as results showing poorer prognosis, are associated with patients' understanding of scan results.
Design: Archival contrasts performed on multi-institutional cohort study data.
Subjects: Advanced cancer patients whose disease progressed after at least one chemotherapy regimen (N = 94) and their clinicians (N = 28) were recruited before an oncology appointment to discuss routine scan results.
Measurements: In preappointment structured interviews, patients rated sadness and anxiety about their cancer. Following the appointment, patients and clinicians reported whether the imaging results discussed showed progressive, improved, or stable disease.
Results: Overall, 68% of patients reported their imaging results accurately, as indicated by concordance with their clinician's rating. Accuracy was higher among patients whose results indicated improved (adjusted odds ratio [AOR] = 4.12, p = 0.02) or stable (AOR = 2.59, p = 0.04) disease compared with progressive disease. Patients with greater anxiety were less likely to report their imaging results accurately than those with less anxiety (AOR = 0.09, p = 0.003); in contrast, those with greater sadness were more likely to report their results accurately than those with less sadness (AOR = 5.23, p = 0.03).
Conclusions: Advanced cancer patients with higher anxiety and those with disease progression may need more help understanding or accepting their scan results than others.
Guided imagery (GI) is a nonpharmacological intervention that is increasingly implemented in different clinical contexts. However, there have been no studies on the effect of GI on the comfort of inpatients of palliative care (PC) units. Therefore, the aim of this study was to evaluate the effects of GI on the comfort of patients in PC. A 1-group, pretest-posttest, pre-experimental design was used to measure differences in heart rate, respiratory rate, pain, and comfort in patients (n = 26) before and after a 2-session GI program. The intervention featuring GI increased comfort, measured by an Abbreviated Holistic Comfort Scale and the visual analog comfort scale (P < .001), and decreased heart rate (P < .001), respiratory rate (P < .001), and pain, as measured by the (numerical) visual analog pain scale (P < .001). This study demonstrates that the use of an intervention featuring GI increases the comfort of oncology patients admitted to a PC unit. The use of GI by nurses is inexpensive, straightforward to implement, and readily available and may result in the provision of comfort care.
OBJECTIVE: As back pain is the presenting symptom in 95% of patients with epidural spinal metastases, appropriately identifying and treating the most symptomatic levels can provide significant palliation. The purpose of this study was to analyze the ability of combined positron emission tomography (PET)/computed tomography (CT) to identify spinal metastases with high metabolic activity and guide radiotherapy. We sought to correlate improvement in back pain with reduction in standard uptake value (SUV) after treatment.
METHODS: Retrospective review was performed of 72 patients with spinal metastases treated with stereotactic ablative radiation therapy at a single center between 2002 and 2014. PET/CT was used to calculate SUVs for spinal metastases, and treatment planning was based on PET/CT results. Preoperative and postoperative pain levels were assessed in all patients.
RESULTS: Reduction in pain scores was found in 78% of treated patients. A significant reduction in pain was identified in patients with >5 metastases compared with fewer lesions (P < 0.05). Degree of change in SUV did not correlate significantly with pain relief. However, comparing pretreatment and posttreatment PET/CT, patients with improved pain consistently displayed decreased SUV.
CONCLUSIONS: PET/CT was shown to be a useful adjunct in radiation treatment planning with change in SUV correlating with symptomatic improvement. This study paves the way for future prospective studies to further assess utility and cost-effectiveness of this imaging modality in radiation treatment planning for spinal metastases.
INTRODUCTION: Advanced imaging can inform prognosis and may be a mechanism to de-escalate unnecessary end-of-life care in patients with cancer. Associations between greater use of advanced imaging and less-aggressive end-of-life care in real-world practice has not been examined.
METHODS: We conducted a retrospective analysis of SEER-Medicare data on patients who died from breast, lung, colorectal, or prostate cancer between 2002 and 2007. Hospital referral region (HRR)-level use of computerized tomography (CT), magnetic resonance imaging, and positron emission tomography was categorized by tertile of imaging use and correlated with hospice enrollment overall and late hospice enrollment using multivariable logistic regression.
RESULTS: A total of 55,058 patients met study criteria. Hospice use ranged from 50.8% (colorectal cancer) to 62.1% (prostate cancer). In multivariable analyses, hospital referral regions (HRRs) with high rates of CT imaging were associated with lower odds of hospice enrollment (odds ratio, 0.80; 95% CI, 0.70-0.90) and late enrollment among those who did enroll (odds ratio, 1.49; 95% CI, 1.26-1.76). HRRs with the highest rates of CT use were predominantly located in the Midwest and Northeast and associated with higher percentage population of black patients (14.5 vs 5.6%), greater comorbidity (28.4 vs 23.7%), metropolitan residence (93.9 vs 78.5%), and less than high school education (26.4 vs 19.3%).
CONCLUSION: In this population-based retrospective study, we did not observe evidence that overall and timely hospice are associated with higher rates of imaging near the end of life. An observed association between higher rates of imaging, particularly CT, may be explained in part by HRR-level differences in practice patterns and patient demographic characteristics. Further research is warranted to explore the ability of oncologic imaging to appropriately de-escalate care.
PURPOSE: The aim of this study was to assess the effect of spending patterns during the final year of life on high-cost imaging utilization in the final 3 months of life.
METHODS: An academic comprehensive cancer center's radiology, cancer registry, and claims records were matched to identify decedents with dates of death from April 2013 through June 2014. Spending patterns in the final year of life were identified using group-based trajectory modeling. Descriptive analysis of CT, MRI, and PET utilization across trajectories was conducted. Multivariate logistic regressions modeled the likelihood of imaging utilization in the final 3 months of life, and a sensitivity analysis assessed the impact of spending trajectories on model fit.
RESULTS: Six spending trajectories were identified. Membership in the late rising trajectory was the strongest predictor of high-cost imaging in the final 3 months of life (odds ratio, 11.61; P = .000), followed by diagnosis 12 to 6 months premortem (odds ratio, 7.49; P = .000). The likelihood of imaging the final 3 months of life was no different between high persistent and low persistent trajectory patients, despite the heterogeneity between the two patient groups. Sensitivity analysis indicated that spending trajectory improved the prediction of imaging in the final 3 months of life to a greater extent than temporal proximity to death at the time of diagnosis, which may serve as a proxy for severity and/or complexity.
CONCLUSIONS: Clinical measures of severity and patients' utilization histories should be considered by hospital administrators in estimations of aggregate and individual oncologic imaging utilization. This analytic approach may aid in evaluating participation in advanced payment models.
Investigating hippocampal subfields may provide new and important insights into the pathophysiology of posttraumatic stress disorder (PTSD). However, no study has examined the hippocampal subfield volume changes in parents with or without PTSD who had lost their only child and could no longer conceive in China. Fifty-seven parents with PTSD (PTSD+), 11 trauma-exposed parents without PTSD (PTSD-), and 39 non-traumatized controls were recruited to examine the hippocampal subfield volumes using magnetic resonance imaging. Correlations of the volumes with the time since trauma and Clinician-Administered PTSD Scale (CAPS) scores were investigated in the PTSD+ group. The volumes of the bilateral cornu ammonis (CA) 2-3, CA4-dentate gyrus (DG), and left subiculum were significantly smaller in the PTSD+ and PTSD- groups than in the controls, but there were no significant differences between the PTSD+ and PTSD- groups. Additionally, the left CA2-3 and CA4-DG volumes reduced more than those on the right side in the PTSD+ and PTSD- groups. The subfield volumes were not related to the time since trauma and the CAPS scores in the PTSD+ group. In conclusion, hippocampal subfield volumes decreased in parents who lost their only child with or without PTSD, and the volumetric reduction may be independent of PTSD and trauma-related. Moreover, the hippocampal volume deficits showed laterality that the left side was affected more than the right, and the hippocampal subfields may show differential vulnerabilities to trauma/PTSD, with the CA2-3 and CA4-DG subfields more sensitive than others.
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.
Ce document présente les résumés de contributions suivantes :
(1) Les travaux des équipes en collaboration avec le CNRD (Douleur et bien être chez les diabétiques ; L'audit est-il un levier de changement ? ; Quelle durée de vie pour les bonnes pratiques ? ; Prévention des douleurs provoquées par les opérations de brancardage ; Evaluation du recours au MEOPA en médecine de ville) ;
(2) Reconnaître la douleur : un défi quotidien (Quand le plaignant devient patient ; Quand les soignants n'entendent pas ; Pourquoi le patient âgé crie-t-il ? ; Comment réduire la douleur lors des changements de pansements des plaies ? ; Prévention de la douleur provoquée par les soins : les moyens relevant du rôle infirmier autonome) ;
(3) Approches non pharmacologiques (Art-thérapie : définition et contexte ; Douleur et musicothérapie lors de la réfection de pansement chez les patients porteurs d'ulcères des membres inférieurs d'origine vasculaire ; Art-thérapie en soins palliatifs) ;
(4) Douleurs provoquées et imagerie médicale (Problématique de la douleur en radiologie ; Douleurs provoquées et imagerie médicale : comment améliorer les pratiques ? ; La prise en charge de la douleur provoquée lors d'examens en imagerie médicale ; Les difficultés de la prise en charge de la douleur en imagerie médicale).
Quand les techniques d'imagerie prénatale (IRM, échographie) révèlent un risque de pathologie grave, comment accompagner les parents, confrontés à une décision psychiquement et humainement très lourde ? Cet article insiste sur l'importance d'une véritable démarche de questionnement éthique. Il faut redonner au foetus, dont l'imagerie médicale tend à en faire un "objet" d'étude, son statut de sujet. Et la décision des parents ne sera "éthiquement acceptable" que si elle a été prise dans un espace de parole libre et bienveillant avec les professionnels.
Les questionnements liés à la prise en charge des patients en état végétatif sont complexes et trois champs au moins sont invoqués de façon directe : la neurologie et l'évaluation de l'état de conscience, la psychologie avec les conséquences pour la famille, et l'éthique. Les auteurs évoquent ces champs et font un tableau synthétique de la clinique de ces patients.
Les gliomes sont des tumeurs cérébrales primitives atteignant le système nerveux central. Plus 3000 personnes en sont atteintes chaque année en France, pourtant ces tumeurs restent mal connues. Ce dossier destiné aux infirmiers fait un point complet sur les gliomes dans la pratique soignante.
Les auteurs montrent différentes situations où l'hypnose peut être utile : pendant un acte radiologique invasif douloureux, pendant un examen radiologique anxiogène, chez un patient phobique, annonce d'n cancer, d'une maladie invalidante (SEP), d'une malformation foetale à la suite d'un examen d'imagerie, radiologie de l'enfant. trois expériences avec des patients sont présentés.
Ce document présente les travaux menés de 1997 à 1999 par la cellule de réflexion de l'Espace éthique concernant les enjeux éthiques des pratiques hospitalières. Les résultats des travaux sont présentés par thématiques : information des patients exposés à des infections en milieu hospitalier ; médecine prédictive ; conflits de conscience ; enjeux éthiques des nouvelles technologies de l'informatisation médicale ; regards de l'institution sur le handicap ; pratiques médicales et prisons ; devenir des corps après mort périnatale ; éthique et accréditation ; pratiques médicales liées au transsexualisme ; maltraitance et accueil des enfants à l'hôpital ; le consentement ; CECOS et enjeux de la procréatique ; approches de la douleur ; imagerie médicale ; production de soins et finacements ; soins sous contrainte : la loi du 27 juin 1990 ; la tentation du risque zéro ; le placement de la personne âgée en institution ; la place de l'usager dans l'hôpital ; l'urgence vitale ; information médicale face à l'innovation et à l'exploit.
L'auteur est président au Conseil consultatif national d'éthique (CCNE) ; il considère la nouvelle façon de traiter le corps des patients, en considérant non plus ses plaintes mais les informations qui peuvent en être tirées, notamment grâce aux techniques d'imagerie médicale. Selon lui, elles aboutissent à une virtualisation du corps et à une évacuation de la parole et de l'écoute du malade. Ces attitudes sont replacées dans le cadre général d'une médicalisation de la société qui se retrouve dans les principes actuels d'éducation alimentaire, sexuelle et sanitaire. Le livre évoque à la fois les espoirs, les risques et les limites de la science biomédicale et génétique, avec nécessité d'une éthique de responsabilité.
Ce document aborde divers aspects de la médecine périnatale, qui font l'objet soit de tables rondes, soit d'exposés didactiques. A signaler en particulier, la table ronde relative aux interruptions médicales de la grossesse au 3ème trimestre, et notamment "le soutien des parents et de la fratrie" ainsi que les "aspects éthiques des interruptions médicales du 3ème trimestre". Une bibliographie complète chaque contribution à ce congrès.
Dossier spécial portant sur l'histoire du concept de maladie : la notion de maladie chez Hippocrate ; l'apport de Galien au concept de maladie ; la maladie dans la médecine médiévale ; naissance de la maladie mentale ; la révolution contagieuse ; la révolution de l'imagerie.