Healthcare Utilization for Stroke Patients at the End of Life: Nationally Representative Data.

Objectives Stroke and post-stroke complications are associated with high morbidity, mortality, and cost. Our objective was to examine healthcare utilization and hospice enrollment for stroke patients at the end of life. Materials and methods The 2014 Nationwide Readmissions Database is a national database of > 14 million admissions. We used validated ICD-9 codes to identify fatal ischemic stroke, summarized demographics and hospitalization characteristics, and examined healthcare use within 30 days before fatal stroke admission. We used de-identified 2014 Medicare hospice data to identify stroke and non-stroke patients admitted to hospice. Results Among IS admissions in 2014 (n = 472,969), 22652 (4.8%) had in-hospital death. 28.2% with fatal IS had two or more hospitalizations in 2014. Among those with fatal IS admission, 13.0% were admitted with cerebrovascular disease within 30 days of fatal IS admission. Half of stroke patients discharged to hospice from the Medicare dataset were hospitalized with cerebrovascular disease within the thirty days prior to hospice enrollment. Within the study year, 6.9% of hospice enrollees had one or more emergency room visits, 31.7% had one or more inpatient encounters, and 5.2% had one or more nursing facility encounters (compared to 21.4%, 70.6%, and 27.2% respectively in the 30-day period prior to enrollment). Conclusions High rates of readmission prior to fatal stroke may indicate opportunity for improvement in acute stroke management, secondary prevention, and palliative care involvement as encouraged by AHA/ASA guidelines. For patients who are expected to survive 6 months or less, hospice may offer goal-concordant services for patients and caregivers who desire comfort-focused care.

Projecting palliative and end-of-life care needs in Central Lancashire up to 2040: an integrated palliative care and public health approach.

OBJECTIVES: A collaborative study was undertaken by palliative care and public health on behalf of Chorley & South Ribble and Greater Preston Clinical Commissioning Groups. Going beyond a traditional needs assessment by providing projections of local palliative and end-of-life care needs in all conditions over 20 years, the study will support locality commissioning and development of appropriate health care services. STUDY DESIGN: Population-based needs assessment involving secondary analysis of routinely available regional mortality and population data for Central Lancashire (2017). Palliative care need was estimated using three different recognised methods. METHODS: These estimates were combined with routinely available population and mortality projections and observed trends in palliative care need to provide projections up to 2040. RESULTS: Palliative care need in 2017 in Chorley & South Ribble and Greater Preston is estimated to be between 75% (1292) and 97% (1670), and 74.9% (1337) and 95.7% (1710) of all deaths, respectively. By 2040, the annual need is projected to increase compared with 2017 figures, by 24.2-55.9% (314-729 more deaths) in Chorley & South Ribble and by 13.4-41.4% (180-554 more deaths) in Greater Preston. The numbers of deaths from dementia are forecast to increase by three-fold in both localities. CONCLUSION: This study demonstrates practical application of public health data to support the development of locally responsive palliative care services. Dissemination of findings from this needs assessment on rising palliative care need, including numbers of deaths in different disease groups, provides direction to plan appropriate, equitable and sustainable services. Rapidly growing dementia deaths deserve particular attention in the planning of care. Collaborative work between public health and palliative care in other settings is encouraged, and will likely increase in significance as the full impact of COVID-19 is felt.

A Network Analysis of Research Topics and Trends in End-of-Life Care and Nursing.

This study identified the trends in end-of-life care and nursing through text network analysis. About 18,935 articles published until September 2019 were selected through searches on PubMed, Embase, Cochrane, Web of Science, and Cumulative Index to Nursing and Allied Health Literature. For topic modeling, Latent Dirichlet Allocation (K = 8) was applied. Most of the top ranked topic words for the degree and betweenness centralities were consistent with the top 1% through the semantic network diagram. Among the important keywords examined every five years, "care" was unrivaled. When analyzing the two- and three-word combinations, there were many themes representing places, roles, and actions. As a result of performing topic modeling, eight topics were derived as ethical issues of decision-making for treatment withdrawal, symptom management to improve the quality of life, development of end-of-life knowledge education programs, life-sustaining care plan for elderly patients, home-based hospice, communication experience, patient symptom investigation, and an analysis of considering patient preferences. This study is meaningful as it analyzed a large amount of existing literature and considered the main trends of end-of-life care and nursing research based on the core subject control and semantic structure.

El valor de la colaboración multidisciplinaria / The value of multidisciplinary collaboration

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Medicina, Epidemiología y Humanismo antes y después de la COVID-19 / Medicine, epidemiology and humanism before and after COVID-19

La rápida propagación del SARS-CoV-2 requiere la generación de evidencia para ayudar a mitigar su daño global. La medición precisa con los indicadores clínicos y epidemiológicos apropiados asociados con COVID-19 es un paso necesario para reducir la carga individual y poblacional de la pandemia en curso. Estos tiempos sin precedentes han planteado un desafío para los epidemiólogos de enfermedades crónicas, y requirió de un enfoque práctico "para hacer algo para ayudar durante este desastre". Las opciones incluían regresar a la clínica asistencial o recurrir a libros de texto y recursos en línea para un curso acelerado sobre investigación de brotes. Sin embargo, ser consciente de la magnitud del sufrimiento individual soportado por tantos, incluyendo muchos colegas estimados y cercanos, se erige como un desafío personal de enormes proporciones. Se prevé que las artes y otras formas de Humanidades pueden ayudar a restablecer el equilibrio, tanto durante la pandemia, como especialmente después

The rapid propagation of SARS-CoV-2 requires the generation of evidence to help mitigate its global damage. The precise measurement with the appropriate clinical and epidemiological indicators associated with COVID-19 is a necessary step in reducing the individual and population burden of the current pandemic. These unprecedented times have raised a challenge for epidemiologists of chronic diseases and have required a practical approach “to do something to help during this disaster". The options include returning to clinical care or resorting to online textbooks and resources for accelerated courses on the research of outbreaks. However, being aware of the magnitude of individual suffering endured by so many, including many esteemed and close colleagues, becomes a personal challenge of enormous proportions. The arts and other forms of humanities can help re-establish equilibrium, both during the pandemic and especially after it

A Pilot Study of Nonpharmacological Interventions for Hospice Patients With Behavioral and Psychological Symptoms in Dementia.

Agitation is a common, treatable symptom that profoundly impacts quality of life and exacerbates caregiver fatigue in the hospice setting for patients with dementia. The objective of this study was to analyze the efficacy of tailored nonpharmacological interventions for mitigation of unwanted behaviors in the population of patients with behavioral and psychological symptoms in dementia while receiving hospice care. The 4-domain Pittsburgh Agitation Scale (PAS; Motor, Verbal, Aggressive, Resistance to Care) was used for multiple baseline and posttest measurements of agitation. Effectiveness of nonpharmacological interventions was evaluated using analysis of variance for repeated measures for the total PAS score. Motor agitation was the presenting problem with highest-rated severity compared with Verbal, Aggression, and Resistance to Care domains. Analysis of variance demonstrated no difference between baseline referral and pretest total PAS measures (P = .8), but a significant drop in total PAS agitation after intervention (P < .001). The best outcomes, however, were with patients receiving both nonpharmacological and standard pharmacological interventions as opposed to nonpharmacological interventions alone (P = .034). For patients with dementia presenting with behavioral and psychological symptoms, selected nonpharmacological interventions provide significant mitigation of agitation.

Desmontando mitos en cuidados paliativos / Busting palliative care myths

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Pediatric Concurrent Hospice Care: A Scoping Review and Directions for Future Nursing Research.

In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally mandated option for children and their families, no review of the science has been conducted. The purpose of this study was to systematically collect the evidence on concurrent hospice care, critically appraise the evidence, and identify areas for future nursing research. Of the 186 articles identified for review, 14 met the inclusion and exclusion criteria. Studies in this review described concurrent hospice care from a variety of perspectives: policy, legal, and ethics. However, only 1 article evaluated the impact of concurrent hospice care on outcomes, whereas several studies explained clinical and state-level implementation. There is a need for further studies that move beyond conceptualization and generate baseline and outcomes data. Understanding the effectiveness of concurrent hospice care might provide important information for future nursing research. The approaches used to disseminate and implement concurrent hospice care at state, provider, and family levels should be explored.

La importancia de detectar la necesidad de cuidados paliativos para evitar sufrimiento inútil al final de la vida / The importance of assessing the need for palliative care to avoid unnecessary suffering at life's end

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Underutilization of Hospice in Inpatients with Cirrhosis: The NACSELD Experience.

BACKGROUND: Little is known about patients discharged to hospice following hospitalization for complications of cirrhosis. AIM: We sought to understand the current pattern of hospice utilization in patients with cirrhosis by evaluating the North American Consortium for the Study of End-stage Liver Disease (NACSELD) cohort. METHODS: Patients with cirrhosis from 14 tertiary-care hepatology centers across North America non-electively hospitalized and prospectively enrolled were evaluated. Exclusion criteria included HIV infection, transplantation or non-hepatic malignancy. Random computer-based propensity score matching was undertaken in a 1:2 ratio based on admission MELD score ± 3 points. RESULTS: Totally, 2718 patients were enrolled, 5% (N = 132) were discharged to hospice, 6% (N = 171) died, and the rest were discharged alive. Patients discharged to hospice were older (60 vs. 57 years, p = 0.04), less likely to have had SBP (13% vs. 28%, p = 0.002) and be listed for liver transplantation (11% vs. 26%, p = 0.0007). Features, on multivariable modeling, associated with increased probability of discharge to hospice as opposed to being discharged alive: grade-3-4 hepatic encephalopathy, a higher Child-Turcotte-Pugh (CTP) score, and a higher discharge serum creatinine; however, a higher serum sodium, being listed for transplant and being prescribed rifaximin or a statin were protective from hospice discharge. CONCLUSION: Patients with more advanced liver disease, hepatic encephalopathy, renal dysfunction, and those not candidates for liver transplantation were more likely to be discharged to hospice. However, in this sick multinational cohort of cirrhotic inpatients, it seems that hospice is markedly underutilized (5%) since 25% of patients not discharged to hospice died within 6 months.

Trends in Place of Death for Cardiovascular Mortality Related to Heart Failure in the United States From 2003 to 2017.

BACKGROUND: The location of death is an important component of end-of-life care. However, contemporary trends in the location of death for cardiovascular deaths related to heart failure (CV-HF) and comparison to cancer deaths have not been fully examined. METHODS: We analyzed data from the Centers for Disease Control and Prevention's Control Wide-Ranging Online Data for Epidemiologic Research database between 2003 and 2017 to identify location of death for CV-HF and cancer deaths. The proportions of deaths that occurred in a hospice facility, home, and medical facility were tested for trends using linear regression. Odds ratios were calculated to determine the odds of death occurring in a hospice facility or home (versus a medical facility) stratified by sex and race. RESULTS: We identified 2 940 920 CV-HF and 8 852 066 cancer deaths. Increases were noted in the proportion of CV-HF deaths in hospice facilities (0.2% to 8.2%; Ptrend<0.001) and at home (20.6% to 30.7%; Ptrend<0.001), whereas decreases were noted in the proportion of deaths in medical facilities (44.5% to 31.0%; Ptrend<0.001) and nursing homes (30.8% to 25.7%; Ptrend<0.001). The odds of dying in a hospice facility (odds ratio, 1.79 [1.75-1.82]) or at home (odds ratio, 1.55 [1.53-1.56]) versus a medical facility was higher for whites versus blacks. The rate of increase in proportion of deaths in hospice facilities was higher for cancer deaths (ß=1.05 [95% CI, 0.97-1.12]) than for CV-HF deaths (ß=0.61 [95% CI, 0.58-0.64]). CONCLUSIONS: The proportion of CV-HF deaths occurring in hospice facilities is increasing but remains low. Disparities are noted whereby whites are more likely to die in hospice facilities or at home versus medical facilities compared with blacks. More research is needed to determine end-of-life preferences for patients with HF and identify the basis for these differences in location of death.

Cuidados ao final da vida no domicílio: considerações sobre o Brasil e a França / Cuidado al final de la vida a domicilio: consideraciones sobre Brasil y Francia / End-of-life care at home: considerations about Brazil and France

Ensaio teórico, oriundo de reflexões tecidas em duas pesquisas, realizadas entre 2012 e 2017. Tem-se como objetivo discutir a inserção do domicílio como um espaço de cuidado nas políticas públicas para o final da vida, no Brasil e na França. Para tal, foi realizada leitura interessada de documentos que normatizam a organização dos serviços que atendem pessoas em cuidados paliativos, de ambos os países. Os documentos que respaldaram a análise foram: no contexto brasileiro, a Portaria n° 825, de 25 de abril de 2016, que redefine a atenção domiciliar no âmbito do sistema de saúde; e, no cenário francês, o Plano Trienal de Cuidados Paliativos (2015-2018). Para nortear as análises recorreu-se a autores vinculados à Antropologia Social e aos Estudos Culturais. Vislumbra-se que a partir dos anos 2000 o domicílio passa a ser elemento central para a efetivação das políticas públicas de saúde, especialmente aquelas que visam organizar o atendimento e o cuidado às pessoas com doenças crônicas e em cuidados paliativos. Trata-se de uma forma menos onerosa em termos econômicos para o Estado e que tende a acolher as expectativas de pacientes e familiares na busca do conforto e de formas menos dolorosas de enfrentar o final da vida

Ensayo teórico, oriundo de reflexiones desarrolladas en dos investigaciones que se llevaron a cabo entre 2012 y 2017. El objetivo es discutir la inserción del domicilio como un espacio de cuidado en las políticas públicas para el final de la vida, en Brasil y en Francia. A tal fin, se hizo la lectura interesada de documentos que normalizan la organización de los servicios que atienden a personas en cuidados paliativos de ambos países. Los documentos que sustentaron el análisis fueron: en el contexto brasileño, la Ordenanza no. 825, del 25 de abril de 2016, que redefine la atención domiciliaria en el ámbito del sistema de salud; y, en el escenario francés, el Plan Trienal de Cuidados Paliativos (2015-2018). Los análisis tuvieron sustentación en autores de la Antropología Social y de los Estudios Culturales. A partir de los años 2000 el domicilio se convierte en el elemento central para el cumplimiento de las políticas públicas de salud, especialmente aquellas que apuntan a organizar la atención y el cuidado a las personas con enfermedades crónicas y en cuidados paliativos. Se trata de una forma menos costosa en términos económicos para el Estado y que tiende a acoger las expectativas de pacientes y familiares en la búsqueda del confort y de formas menos dolorosas de enfrentar el final de la vida

It is a theoretical essay derived from considerations developed in two researches carried out between 2012 and 2017. The objective is discussing the insertion of the domicile as a caring space within public policies regarding the end of life in Brazil and in France. For this purpose, reading documents that regulate the organization of services addressed to persons undergoing palliative care in both countries was performed with peculiar interest. The documents that supported the analysis were: from the Brazilian context, Ordinance no. 825/2016; and, from the French scenario, the Triennial Plan for Palliative Care (2015 -2018). To guide the analysis, the source referrals were authors linked to Social Anthropology and Cultural Studies. Since the years 2000, the home became a central element for the implementation of public health policies, especially those aimed at organizing the care towards people with chronic diseases and in palliative care. It is an approach with less economic costs for the State while it tends to meet the expectations of patients and families in the search for comfort and less painful ways to face the end of life

Comentario a «En respuesta a la pregunta: ¿Jugamos todos en el mismo equipo?» / Comment to «In reply to the question: Are we really playing together in the same team?»

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Continuity of Physicians' Dedication to Inpatient Hospice and Palliative Care: A 14-year Nationwide Survey in Taiwan.

Background: The work continuity of physicians in hospice and palliative medicine (HPM) has a great impact on the quality of care and practice experiences. However, nationwide studies providing a general overview of the work continuity of HPM physicians are scarce. Methods: Data relating to inpatient HPM care provided from July 2000 to December 2013 were obtained from the National Health Insurance Research Database of Taiwan. Specifically, the numbers of hospitals, patients, patient hospitalization days, and physicians involving HPM in each year were calculated. The years of HPM work experience and total HPM workdays of each physician were also computed. Results: Of the 40,965,153 inpatient records during the study, 121,258 (0.3%) records were related to inpatient HPM care, with 60 participating hospitals and 604 attending physicians. The annual number of HPM physicians increased with time from 77 in 2000 to 217 in 2013. The largest percentage (38.4%) of physicians practiced HPM for only one year, while only 23 (3.8%) physicians practiced HPM in each year without interruption. Of the 217 HPM physicians in 2013, 45 (20.7%) were newcomers, 78 (36.0%) had 1-4 years of prior HPM work experience, 54 (24.9%) had 5-9 years, and 40 (18.4%) had at least 10 years. Conclusions: Among HPM physicians in Taiwan, only a small percentage exhibited long-term dedication to the field, whereas most HPM physicians had short practice periods. More strategies are needed to improve work continuity among HPM physicians.