OBJECTIVE: No prior studies have used a single sample of bereaved families of cancer patients to compare multiple scales for assessing Complicated Grief. Here, we compare the two measures.
METHODS: We sent a questionnaire to the bereaved families of cancer patients who had died at 71 palliative care units nationwide.
RESULTS: The analysis included 3173 returned questionnaires. Prevalence of Complicated Grief was 7.8% by Brief Grief Questionnaire (with a cutoff score of 8) and 15.5% for Inventory of Complicated Grief (with a cutoff score of 26). The Spearman's correlation coefficient between the Brief Grief Questionnaire and the Inventory of Complicated Grief was 0.79, and a ceiling effect was seen for the distribution of the Brief Grief Questionnaire scores. Although 6.4% of respondents scored both 8 or higher on the Brief Grief Questionnaire and 26 or higher on the Inventory of Complicated Grief, only 1.4% scored both 8 or higher on the Brief Grief Questionnaire and <26 on the Inventory of Complicated Grief. In contrast, 9.1% scored <8 on the Brief Grief Questionnaire but 26 or higher on the Inventory of Complicated Grief.
CONCLUSION: The prevalence of Complicated Grief was estimated to be higher by the Inventory of Complicated Grief than by the Brief Grief Questionnaire in this sample. Patients with severe Complicated Grief might be difficult to discriminate their intensity of grief by the Brief Grief Questionnaire. Once the diagnostic criteria of Complicated Grief are established, further research, such as optimization of cutoff points and calculations of sensitivity and specificity, will be necessary.
BACKGROUND: Patients with end-stage liver disease (ESLD) have limited treatment options and have a deteriorated quality of life with an uncertain prognosis. Early identification of ESLD patients with a poor prognosis is valuable, especially for palliative care. However, it is difficult to predict ESLD patients that require either acute care or palliative care.
OBJECTIVE: We sought to create a machine-learning monitoring system that can predict mortality or classify ESLD patients. Several machine-learning models with visualized graphs, decision trees, ensemble learning, and clustering were assessed.
METHODS: A retrospective cohort study was conducted using electronic medical records of patients from Wan Fang Hospital and Taipei Medical University Hospital. A total of 1214 patients from Wan Fang Hospital were used to establish a dataset for training and 689 patients from Taipei Medical University Hospital were used as a validation set.
RESULTS: The overall mortality rate of patients in the training set and validation set was 28.3% (257/907) and 22.6% (145/643), respectively. In traditional clinical scoring models, prothrombin time-international normalized ratio, which was significant in the Cox regression (P<.001, hazard ratio 1.288), had a prominent influence on predicting mortality, and the area under the receiver operating characteristic (ROC) curve reached approximately 0.75. In supervised machine-learning models, the concordance statistic of ROC curves reached 0.852 for the random forest model and reached 0.833 for the adaptive boosting model. Blood urea nitrogen, bilirubin, and sodium were regarded as critical factors for predicting mortality. Creatinine, hemoglobin, and albumin were also significant mortality predictors. In unsupervised learning models, hierarchical clustering analysis could accurately group acute death patients and palliative care patients into different clusters from patients in the survival group.
CONCLUSIONS: Medical artificial intelligence has become a cutting-edge tool in clinical medicine, as it has been found to have predictive ability in several diseases. The machine-learning monitoring system developed in this study involves multifaceted analyses, which include various aspects for evaluation and diagnosis. This strength makes the clinical results more objective and reliable. Moreover, the visualized interface in this system offers more intelligible outcomes. Therefore, this machine-learning monitoring system provides a comprehensive approach for assessing patient condition, and may help to classify acute death patients and palliative care patients. Upon further validation and improvement, the system may be used to help physicians in the management of ESLD patients.
BACKGROUND: A recent randomized trial of bereaved family members of patients who died in an intensive care unit identified symptoms of depression and posttraumatic stress in recipients of semistructured condolence letters.
OBJECTIVES: To explore family member and clinician experiences with receiving or sending handwritten sympathy cards upon the death of patients involved in a personalized end-of-life intervention, the 3 Wishes Project.
METHODS: Interviews and focus groups were held with 171 family members and 222 clinicians at 4 centers to discuss their experiences with the 3 Wishes Project. Interview transcripts were searched to identify participants who discussed sympathy cards. Data related to sympathy cards were independently coded by 2 investigators through conventional content analysis.
RESULTS: Sympathy cards were discussed during 32 interviews (by 25 family members of 21 patients and by 11 clinicians) and 2 focus groups (8 other clinicians). Family members reported that personalized sympathy cards were a welcome surprise; they experienced them as a heartfelt act of compassion. Clinicians viewed cards as an opportunity to express shared humanity with families, reminding them that they and their loved one were not forgotten. Signing cards allowed clinicians to reminisce individually and collectively with colleagues. Family members and clinicians experienced sympathy cards as a meaningful continuation of care after a patient's death.
CONCLUSIONS: Inviting clinicians who cared for deceased patients to offer personalized, handwritten condolences to bereaved family members may cultivate sincere and individualized expressions of sympathy that bereaved families appreciate after the death of patients involved in the 3 Wishes Project.
Background: The predictive value of the prognostic tool for patients with advanced cancer is uncertain in mainland China, especially in the home-based palliative care (HPC) setting. This study aimed to compare the accuracy of the Palliative Prognostic Index (PPI), the Performance Status–Based Palliative Prognostic Index (PS-PPI), and the Chinese Prognosis Scale (ChPS) for patients with advanced cancer in the HPC setting in mainland China.
Methods: Patients with advanced cancer admitted to the hospice center of Yuebei People’s Hospital between January 2014 and December 2018 were retrospectively calculated the scores according to the three prognostic tools. The Kaplan-Meier method was used to compare survival times among different risk groups. Receiver operating characteristic curve analysis was used to assess the predictive value. The accuracy of 21-, 42- and 90-day survival was compared among the three prognostic tools.
Results: A total of 1863 patients were included. Survival time among the risk groups of all prognostic tools was significantly different from each other except for the PPI. The AUROC of the ChPS was significantly higher than that of the PPI and PS-PPI for 7-, 14, 21-, 42-, 90-, 120-, 150- and 180-day survival (P < 0.05). The AUROC of the PPI and PS-PPI were not significantly different from each other (P > 0.05).
Conclusions: The ChPS is more suitable than the PPI and PS-PPI for advanced cancer patients in the HPC setting. More researches are needed to verify the predictive value of the ChPS, PPI, and PS-PPI in the HPC setting in the future.
OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.
DESIGN: Qualitative study using interviews and focus groups.
SETTING: Health and Social Care Services in the North of England.
PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members.
RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.
CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.
But de l’étude : La possibilité de passer sa fin de vie chez soi est un enjeu de santé publique qui répond à la demande de la population et aux contraintes du système de santé. L’organisation de l’offre de soins et des acteurs infirmiers est donc centrale dans le développement des soins palliatifs à domicile. L’objectif de cette étude était de décrire la place des différents acteurs de soins infirmiers dans la prise en charge des situations palliatives avancées et terminales à domicile.
Matériel et méthodes : Une enquête de pratique a été réalisée au moyen d’un questionnaire en ligne auprès des médecins généralistes installés en Gironde. Le repérage des situations palliatives était réalisé avec le "Supportive & Palliative Care Indicators Tool" en version française (SPICT-FR™).
Résultats : En tout 89 médecins ont décrit la prise en charge de 607 patients en situations palliatives avancées et terminales en cours de suivi, et celle de 260 patients décédés à domicile au cours des 12 derniers mois à l’issue d’une pathologie en situation palliative. Les infirmiers libéraux assuraient, seuls, 64 % de l’ensemble des prises en charge en cours, et 56 % de celles le mois précédant le décès. Ils intervenaient également dans la majorité des situations où les infirmiers des services d’hospitalisation à domicile et des services de soins infirmiers à domicile étaient présents.
Conclusion : Alors que la représentation commune tend à considérer l’infirmier du service d’hospitalisation à domicile comme l’acteur majoritaire des situations palliatives avancées et terminales à domicile, cette enquête montre que les infirmiers libéraux ont une place prépondérante dans ces situations. Le développement des soins palliatifs à domicile et de la culture palliative passera par une meilleure reconnaissance et le soutien de ces acteurs.
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.
Dans le contexte de confinement, notre mise en place de visioconférence de résidents auprès des familles et du psychologue traduit la sollicitude des équipes vis-à-vis des résidents. Cependant, le confinement a réactivé les angoisses archaïques emboîtées de l'ensemble du corps social, des soignants, des familles et des résidents en Ehpad, empêchant la prise en compte des adaptations nécessaires et différenciées selon le niveau de dépendance psychique.
Avec le confinement, les individus ont été tenus à distance physique les uns des autres et ont donc connu un isolement sans précédent, que cet isolement soit strictement individuel ou bien collectif. Chacun a donc été appelé à mobiliser ses propres capacités, ses propres ressources pour "tenir" dans un contexte d'isolement relatif et sans pouvoir se déplacer. Les professionnels en charge des personnes vulnérables ont largement utilisé les "technologies de la distance", comme le téléphone, pour maintenir les relations d'aide et de soin.
BACKGROUND: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure.
AIM: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure.
DESIGN: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools' development, evaluation, feasibility, and implementation was sought and described.
DATA SOURCES: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included.
RESULTS: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess.
CONCLUSION: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.
Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
OBJECTIVES: To estimate the content validity of the Symptom Control nursing outcome for heart failure patients in palliative care and to analyze the influence of experts' experience in the judgment of the relevance of indicators.
METHODS: A methodological study conducted in São Paulo in 2018, with an adaptation of Fehring's validation model. The relevance of the 11 outcome indicators was assessed by 19 experts by means of an electronically submitted survey. The influence of the experts' experience on judgment was analyzed by the Wilcoxon-Mann-Whitney test and by Kendall's Tau correlation.
RESULTS: The indicators were considered pertinent; with 54.5% classified as critical. There was no association between the weighted means of the indicators and the experts' experience.
CONCLUSIONS: The indicators analyzed are relevant for the evaluation of the Symptom Control outcome in this group of patients. The experts' judgment was not influenced by their area of clinical experience or by their experience with the Nursing Outcomes Classification (NOC).
Aim: We validated the NUE rule, using three criteria (Non-shockable initial rhythm, Unwitnessed arrest, Eighty years or older) to predict futile resuscitation of patients with out-of-hospital cardiac arrest (OHCA).
Methods: We performed a retrospective cohort analysis of all recorded OHCA in Marion County, Indiana, from January 1, 2014 to December 31, 2019. We described patient, arrest, and emergency medical services (EMS) response characteristics, and assessed the performance of the NUE rule in identifying patients unlikely to survive to hospital discharge.
Results: From 2014 to 2019, EMS responded to 4370 patients who sustained OHCA. We excluded 329 (7.5%) patients with incomplete data. Median patient age was 62 years (IQR 49 - 73), 1599 (39.6%) patients were female, and 1728 (42.8%) arrests were witnessed. The NUE rule identified 290 (7.2%) arrests, of whom none survived to hospital discharge.
Conclusion: In external validation, the NUE rule (Non-shockable initial rhythm, Unwitnessed arrest, Eighty years or older) correctly identified 7.2% of OHCA patients unlikely to survive to hospital discharge. The NUE rule could be used in EMS protocols and policies to identify OHCA patients very unlikely to benefit from aggressive resuscitation.
OBJECTIVE: Patients with advanced diseases and frail older adults often face decisions regarding life-prolonging treatment. Our aim was to provide an overview of the feasibility and effectiveness of tools that support communication between healthcare professionals and patients regarding decisions on life-prolonging treatments in hospital settings.
DESIGN: Systematic review: We searched PubMed, CINAHL, PsycINFO, Embase, Cochrane Library and Google Scholar (2009-2019) to identify studies that reported feasibility or effectiveness of tools that support communication about life-prolonging treatments in adult patients with advanced diseases or frail older adults in hospital settings. The Mixed Methods Appraisal Tool was used for quality appraisal of the included studies.
RESULTS: Seven studies were included, all involving patients with advanced cancer. The overall methodological quality of the included studies was moderate to high. Five studies described question prompt lists (QPLs), either as a stand-alone tool or as part of a multifaceted programme; two studies described decision aids (DAs). All QPLs and one DA were considered feasible by both patients with advanced cancer and healthcare professionals. Two studies reported on the effectiveness of QPL use, revealing a decrease in patient anxiety and an increase in cues for discussing end-of-life care with physicians. The effectiveness of one DA was reported; it led to more understanding of the treatment in patients.
CONCLUSIONS: Use of QPLs or DAs, as a single intervention or part of a programme, may help in communicating about treatment options with patients, which is an important precondition for making informed decisions.
Objectives: Although early palliative care is associated with a better quality of life and improved outcomes in end-of-life cancer care, the criteria of palliative care referral are still elusive.
Methods: We collected patient-reported symptoms using the Edmonton Symptom Assessment System (ESAS) at the baseline, first and second follow-up visits. A total of 71 patients were evaluable, with a median age of 65 years, male (62%) and Eastern Cooperative Oncology Group (ECOG) performance status distribution of 1/2/3 (28%/39%/33%) respectively.
Results: Twenty (28%) patients had moderate/severe symptom burden with the mean ESAS = 5. Interestingly, most of the patients with moderate/severe symptom burdens (ESAS = 5) had globally elevated symptom expression. While the mean ESAS score was maintained in patients with mild symptom burden (ESAS < 5; 2.7 at the baseline; 3.4 at the first follow-up; 3.0 at the second follow-up; p = .117), there was significant symptom improvement in patients with moderate/severe symptom burden (ESAS = 5; 6.5 at the baseline; 4.5 at the first follow-up; 3.6 at the second follow-up; p < .001).
Conclusions: In conclusion, advanced cancer patients with ESAS = 5 may benefit from outpatient palliative cancer care. Pre-screening of patient-reported symptoms using ESAS can be useful for identifying unmet palliative care needs in advanced cancer patients.
CONTEXT: Previous studies suggest that clinicians' prediction of survival (CPS) may have reduce the accuracy of objective indicators for prognostication in palliative care.
OBJECTIVES: We aimed to examine the accuracy of CPS alone, compared to the original Palliative Prognostic Score (PaP), and five clinical/laboratory variables of the PaP in far advanced cancer patients.
METHODS: We compared the discriminative accuracy of three prediction models [the PaP-CPS (the score of the categorical CPS of PaP), PaP without CPS (sum of the scores of only the objective variables of PaP), and PaP total score] across 3 SETTINGS: inpatient palliative care consultation team, palliative care unit, and home palliative care. We computed the area under receiver operating characteristic curve (AUROC) for 30-day survival and concordance index (C-index) to compare the discriminative accuracy of these three models.
RESULTS: We included a total of 1,534 subjects with median survival of 34.0 days. The AUROC and C-index in the three settings were 0.816-0.896 and 0.732-0.799 for the PaP total score, 0.808-0.884 and 0.713-0.782 for the PaP-CPS, and 0.726-0.815 and 0.672-0.728 for the PaP without CPS, respectively. The PaP total score and PaP-CPS showed similar AUROCs and C-indices across the three settings. The PaP total score had significantly higher AUROCs and C-indices than the PaP without CPS across the three settings.
CONCLUSION: Overall, the PaP total score, PaP-CPS, and PaP without CPS showed good discriminative performances. However, the PaP total score and PaP-CPS were significantly more accurate than the PaP without CPS.
Context: The Cancer Dyspnea Scale (CDS) is a self-reported multidimensional tool used for the assessment of dyspnea, a subjective experience of breathing discomfort, in cancer patients. The scale describes dyspnea using three distinct factors: physical, psychological and discomfort at rest.
Objective: to cross-cultural validate the Italian version of CDS (CDS-IT) and examine its content validity, feasibility, internal consistency and construct validity in patients with advanced cancer.
Methods: A cross-sectional study was conducted. CDS-IT was forward-backward translated, and its content was validated among a group of experts. Cronbach’s a coefficients was used to assess the internal consistency. Construct validity was examined in terms of structural validity through confirmatory factor analysis and convergent validity with Dyspnea Visual Analogue Scale (VAS-D) through the Pearson’s correlation coefficient (r). Cancer Quality of life (EORTC QLQ-C15-PAL) and Italian Palliative Outcome Scale (IPOS) were also tested.
Results: The CDS-IT was cross-cultural validated and showed satisfactory content validity. A total of 101 patients (mean age: 76 (SD 12), 53% of female) were recruited in palliative care settings. CDS-IT reported a good internal consistency in the total score and its factors (a=0.74-0.83). The factor analysis corresponded acceptably, but not completely with the original study. CDS-IT strongly correlated with VAS-D (r=0.68) and moderately with IPOS and EORTC QLQ-C15-PAL (r=0.33-0.36, respectively).
Conclusions: The study findings supported the cross-cultural validity of the CDS-IT. Its feasibility, internal consistency and construct validity are satisfactory for clinical practice. The CDS-IT is available to healthcare professionals as a useful tool to assess dyspnea in cancer patients.
Education leaders in Hospice and Palliative Medicine (HPM) have long acknowledged the challenge of fellow performance assessment and the need for HPM specific fellow assessment tools. In 2010, and in alignment with the Accreditation Council for Graduate Medical Education's (ACGME) directive toward competency-based medical education, the national HPM Competencies Workgroup curated a set of assessment tools, the HPM Toolkit of Assessment
Methods. The Toolkit has been a resource for HPM fellowship directors in evolving practical, multi-faceted fellow assessment strategies. Now, as AAHPM plans for a national workgroup in 2020 to define current HPM fellow assessment methods and to propose strategies to strengthen and standardize future assessment, the Toolkit provides a strong base from which to launch. However, the field learned important lessons from the 2010 Workgroup about the consensus process, gaps in areas of assessment, opportunities to address gaps with new or adapted tools, and limitations in implementing the Toolkit over time in terms of tracking, accessibility, and dissemination. This paper describes the development of the Toolkit, including recommended tools and methods for assessment within each ACGME competency domain, and links the lessons learned to recommendations for the 2020 workgroup to consider in creating the next HPM assessment strategy and toolkit. Effective implementation will be crucial in supporting fellows to reach independent practice, which will further strengthen the field and workforce to provide the highest quality patient and family-centered care in serious illness. This will require an inspired, committed effort from the HPM community, which we enthusiastically anticipate.