Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment.

OBJECTIVE: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. STUDY DESIGN: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. RESULTS: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. CONCLUSIONS: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.

Do People Prefer Home Palliative Care? A Survey Study and Assessment of Associated Factors in China.

Objectives: This study examined people's preference for the location to receive palliative care services and determined the associated factors. Methods: A questionnaire with reference to the Chinese version of the Hospice Attitude Scale and the Death Correspondence Scale was designed, piloted, revised, and distributed online and in person to collect data (N = 762). Binary logistic regression was used to analyze the effects of relevant factors. Results: The average age of the participants was 38.1, with a relatively even gender distribution. Over 90% of the participants were either single/never married (44.9%) or married with children (46.0%). 58.1% of the respondents (N = 428) indicated that they would like to receive palliative care at home, compared to 41.9% who preferred receiving such care in institutions or other places (N = 309). Each time people's attitudes toward death became one point more positive, they were 10.2% more likely to choose to receive palliative care services at home. People with a neutral attitude toward palliative care, single/never married or divorced with children, and having/had an occupation in health and social work had higher odds of preferring receiving palliative care at home. Those who had poor self-rated health or with an educational background of primary school or lower or some college had lower odds of preferring receiving palliative care at home. Conclusions: The research showed that attitudes toward death and other factors were associated with people's preferences for palliative care locations. More accessible and affordable community-based and home-based palliative care services should be further explored and provided.

Desarrollo de los cuidados paliativos pediátricos en Uruguay, 2008-2020: informe de avances / Development of pediatric palliative care in Uruguay, 2008-2020: progress report / Desenvolvimento dos cuidados paliativos pediátricos no Uruguai nos anos 2008-2020: relatório de progresso

Desde el año 2007 en Uruguay los cuidados paliativos (CP) son parte de las prestaciones de salud que todos los ciudadanos que los necesitan tienen derecho a recibir y, desde entonces, ha aumentado significativamente la accesibilidad a estos. Objetivo: describir la situación actual del desarrollo organizativo de servicios de cuidados paliativos pediátricos (CPP) en el país y los pacientes por ellos asistidos desde el inicio de sus actividades hasta el 31/12/2020, las principales fortalezas y desafíos percibidos por los profesionales de dichos equipos. Metodología: se realizó una consulta mediante encuesta online auto administrada enviada a los coordinadores de servicios de CPP del Uruguay. Resultados: se confirmaron 19 equipos en 9/19 departamentos, 5/19 están integrados por profesionales de las cuatro disciplinas básicas recomendadas, el resto por distintas combinaciones de disciplinas, con cargas horarias muy variables. Brindan asistencia en: hospitalización 19/19, policlínica 18/19, atención domiciliaria coordinada 13/19 y retén telefónico 10/19. Fueron asistidos 2957 niños, 23% de los mismos fallecieron. 16/19 equipos reportan como principales fortalezas los valores compartidos y el trabajo en equipo interdisciplinario y 15/19 como principal desafío los déficits de recursos humanos. Conclusiones: persisten importantes inequidades en el acceso a los CPP. Se constató gran variabilidad en la integración de los equipos y la carga horaria de los profesionales. Es necesario que las autoridades sanitarias continúen promoviendo y exigiendo el desarrollo de equipos de CPP en las instituciones y departamentos que no los tienen y el cumplimiento de estándares mínimos de calidad en los ya existentes.

Since 2007, palliative care (PC) has been a part of the health benefits that all Uruguayan citizens are entitled to receive and, since then, accessibility has increased significantly. Objective: to describe the present development of pediatric palliative care services (PPC) in Uruguay and the patients assisted by health providers since the beginning of their services until 12/31/2020 and the key strengths and challenges perceived by these palliative care teams. Methodology: a consultation was carried out through a self-administered online survey and sent to the PPC service coordinators in Uruguay. Results: 19 teams were confirmed in 9/19 departments, 5/19 are integrated by professionals from the four recommended basic disciplines, the rest by different combinations of disciplines, with highly variable workloads. They provide assistance in: hospitalization 19/19, clinics 18/19, coordinated home care 13/19 and telephone assistance 10/19. 2957 children were assisted, 23% of them died. 16/19 teams report shared values and interdisciplinary teamwork as their main strengths, and 15/19 report human resource shortage as their main challenge. Conclusions: significant inequality persist regarding access to PPCs. We confirmed a high variability in teams' integration and professional workload. It is necessary for the health authorities to continue to promote and demand the development of PPC teams in the institutions and departments that do not yet have them and the compliance with minimum quality standards in those that already operate.

Desde 2007, os cuidados paliativos (CP) fazem parte dos benefícios de saúde que todos os cidadãos têm direito a receber no Uruguai e, desde então, a acessibilidade a eles tem aumentado significativamente. Objetivo: descrever a situação atual do desenvolvimento organizacional dos serviços de cuidados paliativos pediátricos (CPP) no Uruguai e dos pacientes atendidos desde o início de suas atividades até 31/12/2020 e as principais fortalezas e desafios percebidos pelos profissionais das referidas equipes. Metodologia: foi realizada uma consulta por meio de uma pesquisa online autoaplicável enviada aos coordenadores dos serviços do CPP no Uruguai. Resultados: 19 equipes foram confirmadas em 19/09 departamentos, 19/05 compostas por profissionais das quatro disciplinas básicas recomendadas, o restante por diferentes combinações de disciplinas, com cargas horárias altamente variáveis. Elas atendem em: internação 19/19, policlínica 18/19, atendimento domiciliar coordenado 13/19 e posto telefônico 19/10. 2.957 crianças foram atendidas, 23% delas faleceram. 16/19 equipes relatam valores compartilhados e trabalho em equipe interdisciplinar como suas principais fortalezas, e 15/19 relatam déficits de recursos humanos como seu principal desafio. Conclusões: persistem desigualdades significativas no acesso aos CPP. Verificou-se: grande variabilidade na integração das equipes e na carga de trabalho dos profissionais. É necessário que as autoridades de saúde continuem promovendo e exigindo o desenvolvimento de equipes de CPP nas instituições e departamentos que não as possuem e o cumprimento de padrões mínimos de qualidade nas que já existem.

Assessment of Clinical Palliative Care Trigger Status vs Actual Needs Among Critically Ill Patients and Their Family Members.

Importance: Palliative care consultations in intensive care units (ICUs) are increasingly prompted by clinical characteristics associated with mortality or resource utilization. However, it is not known whether these triggers reflect actual palliative care needs. Objective: To compare unmet needs by clinical palliative care trigger status (present vs absent). Design, Setting, and Participants: This prospective cohort study was conducted in 6 adult medical and surgical ICUs in academic and community hospitals in North Carolina between January 2019 and September 2020. Participants were consecutive patients receiving mechanical ventilation and their family members. Exposure: Presence of any of 9 common clinical palliative care triggers. Main Outcomes and Measures: The primary outcome was the Needs at the End-of-Life Screening Tool (NEST) score (range, 0-130, with higher scores reflecting greater need), which was completed after 3 days of ICU care. Trigger status performance in identifying serious need (NEST score ≥30) was assessed using sensitivity, specificity, positive and negative likelihood ratios, and C statistics. Results: Surveys were completed by 257 of 360 family members of patients (71.4% of the potentially eligible patient-family member dyads approached) with a median age of 54.0 years (IQR, 44-62 years); 197 family members (76.7%) were female, and 83 (32.3%) were Black. The median age of patients was 58.0 years (IQR, 46-68 years); 126 patients (49.0%) were female, and 88 (33.5%) were Black. There was no difference in median NEST score between participants with a trigger present (45%) and those with a trigger absent (55%) (21.0; IQR, 12.0-37.0 vs 22.5; IQR, 12.0-39.0; P = .52). Trigger presence was associated with poor sensitivity (45%; 95% CI, 34%-55%), specificity (55%; 95% CI, 48%-63%), positive likelihood ratio (1.0; 95% CI, 0.7-1.3), negative likelihood ratio (1.0; 95% CI, 0.8-1.2), and C statistic (0.50; 95% CI, 0.44-0.57). Conclusions and Relevance: In this cohort study, clinical palliative care trigger status was not associated with palliative care needs and no better than chance at identifying the most serious needs, which raises questions about an increasingly common clinical practice. Focusing care delivery on directly measured needs may represent a more person-centered alternative.

Physicians' knowledge about palliative care in Bangladesh: A cross-sectional study using digital social media platforms.

INTRODUCTION: Palliative care is still a new concept in many developing countries like Bangladesh. Basic knowledge about palliative care is needed for all physicians to identify and provide this care. This study aims to assess the preliminary knowledge level and the misconceptions about this field among physicians. METHODS: This cross-sectional study was conducted among 479 physicians using a self-administered structured questionnaire adapted from Palliative Care Knowledge Scale (PaCKs) on various digital social media platforms from December 2019 to February 2020. Chi-square, Fisher's extract test, and the Monte Carlo extract test was done to compare the knowledge level with the study subjects' demographic variables. RESULTS: An almost equal number of physicians of both genders from four major specialties and their allied branches took part in the study (response rate 23.9%). The majority (71%) of the respondents had an average to an excellent level of knowledge about palliative care, with a median score of 11.0. Although most physicians had average knowledge about the primary goals and general concepts of palliative care, misconceptions are highly prevalent. The commonly present misconceptions were that palliative care discourages patients from consulting other specialties (88.9%), refrains them from taking curative treatments (83.1%), and this care is only for older adults (74.5%), cancer patients (63%), and the last six months of life (56.4%). Age, educational qualifications, and specialties had significant relationships (P<0.05) with the level of knowledge. CONCLUSION: Despite having average or above knowledge about palliative care, the physicians' prevailing misconceptions act as a barrier to recognizing the need among the target populations. So, proper education and awareness among the physicians are necessary to cross this field's barrier and development.

Beyond drug treatment: a cross-sectional assessment of palliative care services for people living with HIV/AIDS at public health facilities, Abuja, Nigeria.

INTRODUCTION: palliative care offers a care and support system to people living with Human Immunodeficiency Virus (HIV) infection/Acquired Immunodeficiency Syndrome (AIDS). In Nigeria, the palliative care (PC) practice generally is new and still developing. While most studies on HIV/AIDS assess drug treatment and adherence for people living with HIV/AIDS (PLWHA), there is paucity of data on PC services available for them. We therefore assessed the PC services offered and referral services available to PLWHA in health facilities. METHODS: we conducted a cross-sectional study across all public secondary and tertiary health facilities offering HIV care services in Abuja, Nigeria between February and May 2017. We used an interviewer-administered semi-structure questionnaire to collect information from the heads of health facilities. The questionnaire assessed palliative care and referral services for PLWHA. Frequencies and proportions were calculated using Microsoft-Excel. RESULTS: of the 17 health facilities assessed, only 6 (35.3%) have constituted a palliative care team but only 3 (17.6%) had some sources of fund for PC. Twelve (70.6%) provided nutritional support for PLWHA, 6 (35.3%) provided spiritual and 8 (47.1%) offered bereavement support for families of PLWHA. Sixteen (94.1%) had well-established referral services for PLWHA. CONCLUSION: palliative care services for PLWHA were generally poor in all the health facilities. There exists a well-established referral services for PLWHA in most of the health facilities. We recommend that the PC structure for PLWHA should be improved by increasing and ensuring compliance to guidelines and the established referral network should continue to be strengthened.

Direct costs of antineoplastic and supportive treatment for progressive multiple myeloma in a tax-based health system.

Aim: To estimate current real-world costs of drugs and supportive care for the treatment of multiple myeloma in a tax-based health system. Methods: Forty-one patients were included from a personalized medicine study (2016-2019). Detailed information was collected from patient journals and hospital registries to estimate the total and mean costs using inverse probability weighting of censored data. Results: Total observed (censored) costs for the 41 patients was €8.84 million during 125 treatment years, with antineoplastic drugs as the main cost driver (€5.6 million). Individual costs showed large variations. Mean 3-year cost per patient from first progression was €182,103 (€131,800-232,405). Conclusion: Prediction of real-world costs is hindered by the availability of detailed costing data. Micro-costing analyses are needed for budgeting and real-world evaluation of cost-effectiveness.

Lay abstract In recent years, there has been a dramatic improvement in the treatment of multiple myeloma due to the introduction of new drugs. These drugs have significantly increased survival but have also had an immense impact on healthcare budgets. In this study, we used detailed treatment information for multiple myeloma patients in combination with billing data from the hospital pharmacy at a Danish hospital to calculate individual cost histories for both drugs and supportive care. Using these data, we estimated the mean 3-year cost of a multiple myeloma patient to be €182.103, but we also found large variation between patients, causing an uncertainty of €50.000 in either direction. We believe that detailed costing studies, similar to the present one, are necessary for evaluation of cost-effectiveness of drugs in clinical practice.

How Children and Youth with Medical Complexity Use Hospital and Emergency Department Care across Canada.

Children and youth with medical complexity are a diverse group with uncommon diagnoses, a spectrum of needs and varying access to supports. Although this population represents a small proportion of all children, their unique needs lead to substantial use of healthcare services. With its first pan-Canadian report on children and youth with medical complexity, the Canadian Institute for Health Information examined how this population uses healthcare services. Key findings include the wide variation in the rate of medical complexity among children and youth across Canada. Children and youth with medical complexity were found to require a high proportion of hospital and emergency department care; however, their readmission rates were found to be lower than that of the general pediatric population.

Palliative Care Referrals in Cardiac Disease.

OBJECTIVES: With evidence of benefits of pediatric palliative care (PPC) integration, we sought to characterize subspecialty PPC referral patterns and end of life (EOL) care in pediatric advanced heart disease (AHD). METHODS: In this retrospective cohort study, we compared inpatient pediatric (<21 years) deaths due to AHD in 2 separate 3-year epochs: 2007-2009 (early) and 2015-2018 (late). Demographics, disease burden, medical interventions, mode of death, and hospital charges were evaluated for temporal changes and PPC influence. RESULTS: Of 3409 early-epoch admissions, there were 110 deaths; the late epoch had 99 deaths in 4032 admissions. In the early epoch, 45 patients (1.3% admissions, 17% deaths) were referred for PPC, compared with 146 late-epoch patients (3.6% admissions, 58% deaths). Most deaths (186 [89%]) occurred in the cardiac ICU after discontinuation of life-sustaining therapy (138 [66%]). Medical therapies included ventilation (189 [90%]), inotropes (184 [88%]), cardiopulmonary resuscitation (68 [33%]), or mechanical circulatory support (67 [32%]), with no temporal difference observed. PPC involvement was associated with decreased mechanical circulatory support, ventilation, inotropes, or cardiopulmonary resuscitation at EOL, and children were more likely to be awake and be receiving enteral feeds. PPC involvement increased advance care planning, with lower hospital charges on day of death and 7 days before (respective differences $5058 [P = .02] and $25 634 [P = .02]). CONCLUSIONS: Pediatric AHD deaths are associated with high medical intensity; however, children with PPC consultation experienced substantially less invasive interventions at EOL. Further study is warranted to explore these findings and how palliative care principles can be better integrated into care.

Factors Associated With Aggressiveness of End-of-Life Care for Lung Cancer Patients and Associated Costs of Care.

BACKGROUND: Results of previous studies demonstrated that high-intensity end-of-life (EOL) care improves neither cancer patients' survival nor quality of life. Our objective was to assess the incidence of and factors associated with aggressiveness of care during the last 30 days of life (DOL) of lung cancer (LC) patients and the impacts of aggressiveness of care in EOL-care costs. PATIENTS AND METHODS: Using French national hospital database, all patients with LC who died between January 1, 2010, and December 31, 2011, or between January 1, 2015, and January 31, 2016, were included. EOL-care aggressiveness was assessed using the following criteria: chemotherapy administered within the last 14 DOL; more than one hospitalization within the last 30 DOL; admission to the intensive care unit within the last 30 DOL; and palliative care initiated < 3 days before death. Expenditures were limited to direct costs, from a health care payer's perspective. RESULTS: Among 79,746 adult LC patients identified; 57% had at least one indicator of EOL-care aggressiveness (49% repeated hospitalizations, 12% intensive care unit admissions, 9% chemotherapy, 5% palliative care). It increased significantly between the 2 periods (56% vs. 58%, P < .001). Young age, male sex, shorter time since diagnosis, comorbidities, no malnutrition, type of care facility other than general hospital, social deprivation, and low-density population were independently associated with having one or more indicator of aggressive EOL care. The mean EOL cost was €8152 ± 5117 per patient, but the cost was significantly higher for patients with at least one EOL-care aggressiveness criterion (€9480 vs. €6376, P < .001). CONCLUSION: In France, a majority of LC patients had at least one criterion of aggressive EOL care that had a major economic impact on the health care system.

Geographic variation in palliative care delivery among patients diagnosed with metastatic lung cancer in the USA: Medicare population-based study.

PURPOSE: The USA has observed a significant increase in the use of palliative care for patients diagnosed with advanced cancer. However, it is unknown how geographic variation affects patients' use of palliative care services. We examined temporal and demographic trends in receipt of and timing of palliative care by state and region. METHODS: A retrospective cohort study of the Surveillance, Epidemiology, and End Results (SEER)-Medicare database. Study sample included community-dwelling patients aged ≥ 65 years with metastatic lung cancer who were diagnosed between 2001 and 2015. Cochran-Armitage trend test was used to evaluate temporal trends in receipt of and timing of palliative care by states and census region. RESULTS: The proportion of metastatic lung cancer patients who received palliative care ranged from 16.4% in Washington and 16.3% in Connecticut to 6.4% in Louisiana. From 2001 to 2015, use of palliative care increased from 3.2 to 29.8% in the West region, from 3.3 to 31.9% in the Northeast region, from 3.8 to 36.2% in the Midwest region, and from 0.9 to 23.3% in the South region (all P < 0.001). The median time from the date of cancer diagnosis to the date of first palliative care visit varied geographically, from 44 days in Utah to 66 days in California. Hospital-based palliative care was most common in these states. CONCLUSION: The substantial geographic variation in the use of palliative care suggesting a need for additional research on geographic disparities in palliative care and strategies that might improve state-level palliative care delivery.

Consulting with young people: informing guidelines for children's palliative care.

OBJECTIVE: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people). METHODS: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings. RESULTS: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this. CONCLUSION: Young people's priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.

Survival Disparities of Diffuse Large B-Cell Lymphoma in a Community-Based Inner-City Cancer Center.

BACKGROUND: Diffuse large B-cell lymphoma (DLBCL) comprises approximately 30% of all non-Hodgkin lymphomas. Multiple studies have demonstrated race-based disparities in survival among patients with DLBCL across all stages of disease, in the era both before and after rituximab. The etiology for the racial disparities in survival among patients with DLBCL is still unknown. Moreover, the Revised International Prognostic Index (R-IPI), a tool that predicts the DLBCL patients' outcome, has not yet been validated in African Americans (AA). PATIENTS AND METHODS: We conducted a cohort study of patients diagnosed with DLBCL from January 1, 2007, to December 31, 2017, from our tumor registry in a single community-based inner-city cancer center. We abstracted demographic, clinical, histopathologic, treatment, and R-IPI variables. A total of 181 patients (47.5%) with biopsy-proven DLBCL were included in the retrospective analysis. The median age was 65 years, 47% were men, 41% were AA, and 44% were white. RESULTS: The AA group had a younger median age, higher lactate dehydrogenase levels, higher frequency of B symptoms, and higher HIV infection than the non-AA group. The AA group had significantly decreased median overall survival than the non-AA group (15.7 months; 95% confidence interval, 10.3 to 23.9, vs. 93.6 months; 95% confidence interval, 61.5 to 142.6, respectively; P < .001). The survival disparities persisted after excluding patients with HIV and who did not receive chemotherapy. In addition, AA race predicts a reduced survival by univariate and multivariate analysis. CONCLUSION: AA with DLBCL may have a poorer prognosis than the non-AA population. Further studies should investigate the biology of DLBCL in the AA population.

Racial and ethnic disparities in palliative care utilization among gynecological cancer patients.

BACKGROUND: Palliative care (PC) is recommended for gynecological cancer patients to improve survival and quality-of-life. Our objective was to evaluate racial/ethnic disparities in PC utilization among patients with metastatic gynecologic cancer. METHODS: We used data from the 2016 National Cancer Database (NCDB) and included patients between ages 18-90 years with metastatic (stage III-IV) gynecologic cancers including, ovarian, cervical and uterine cancer who were deceased at last contact or follow-up (n = 124,729). PC was defined by NCDB as non-curative treatment, and could include surgery, radiation, chemotherapy, and pain management or any combination. We used multivariable logistic regression to evaluate racial disparities in PC use. RESULTS: The study population was primarily NH-White (74%), ovarian cancer patients (74%), insured by Medicare (47%) or privately insured (36%), and had a Charlson-Deyo score of zero (77%). Over one-third of patients were treated at a comprehensive community cancer program. Overall, 7% of metastatic gynecologic deceased cancer patients based on last follow-up utilized palliative care: more specifically, 5% of ovarian, 11% of cervical, and 12% of uterine metastatic cancer patients. Palliative care utilization increased over time starting at 4% in 2004 to as high as 13% in 2015, although palliative care use decreased to 7% in 2016. Among metastatic ovarian cancer patients, NH-Black (aOR:0.87, 95% CI:0.78-0.97) and Hispanic patients (aOR:0.77, 95% CI:0.66-0.91) were less likely to utilize PC when compared to NH-White patients. Similarly, Hispanic cervical cancer patients were less likely (aOR:0.75, 95% CI:0.63-0.88) to utilize PC when compared to NH-White patients. CONCLUSIONS: PC is highly underutilized among metastatic gynecological cancer patients. Racial disparities exist in palliative care utilization among patients with metastatic gynecological cancer.

Intensity of Care, Expenditure, and Place of Death in French Women in the Year Before Their Death From Breast Cancer: A Population-Based Study.

Health care utilization of women with breast cancer (BC) during the last year of life, together with the causes and place of death and associated expenditure have been poorly described. Women treated for BC (2014-2015) with BC as a cause of death in 2015 and covered by the national health insurance general scheme (77% of the population) were identified in the French health data system (n = 6,696, mean age: 68.7 years, SD ± 15). Almost 70% died in short-stay hospitals (SSH), 4% in hospital-at-home (HaH), 9% in Rehab, 5% in skilled nursing homes (SNH) and 12% at home. One-third presented cardiovascular comorbidity. During the last year, 90% were hospitalized at least once in SSH, 25% in Rehab, 13% in HaH and 71% received hospital palliative care (HPC), but only 5% prior to their end-of-life stay. During the last month, 85% of women were admitted at least once to a SSH, 42% via the emergency department, 10% to an ICU, 24% received inpatient chemotherapy and 18% received outpatient chemotherapy. Among the 83% of women who died in hospital, independent factors for HPC use were cardiovascular comorbidity (adjusted odds ratio, aOR: 0.83; 95%CI: 0.72-0.95) and, in the 30 days before death, at least one SNH stay (aOR: 0.52; 95%CI: 0.36-0.76), ICU stay (aOR: 0.36; 95%CI: 0.30-0.43), inpatient chemotherapy (aOR: 0.55; 95%CI: 0.48-0.63), outpatient chemotherapy (aOR: 0.60; 95%CI: 0.51-0.70), death in Rehab (aOR: 1.4; 95%CI: 1.05-1.86) or HAH (aOR: 4.5; 95%CI: 2.47-8.1) vs SSH. Overall mean expenditure reimbursed per woman was €38,734 and €42,209 for those with PC. Women with inpatient or outpatient chemotherapy during the last month had lower rates of HPC, suggesting declining use of HPC before death. This study also indicates SSH-centered management with increased use of HPC in HaH and Rehab units and decreased access to HPC in SNH.

[There is no progress without school. Postgraduate specialization school completes the paradigm shift in palliative care.] / Non c'è progresso senza scuola. La Scuola di specializzazione completa il cambio di paradigma delle cure palliative.

With the conversion of law decree no. 34 of 19 May 2020, bearing urgent measures concerning health, support to work and the economy, as well as social policies related to CoViD-19 epidemiological emergency, thanks to the approval of an amendment to legislative decree "Rilancio" signed by Giorgio Trizzino, the Specialization school in medicine and palliative care will be established starting from a.y. 2021-2022. Additionally, a course in pediatric palliative care will be introduced in pediatrics specialization schools. The news has been welcomed with enthusiasm by the scientific community and the main stakeholders, some of which have made a strong contribution to this result: the Italian Society for Palliative Care, the Italian Federation for Palliative Care, the Maruzza Levebvre d'Ovidio Foundation, as well as the many professionals, institutions, and NPOs that have been supporting for the past forty years the progress of palliative care in Italy. An assessment of the impact of such a measure and its effects entails due process and contextualization in different areas: first of all, that of demand and current supply, followed by the historical-cultural, the social, and the normative.

Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis.

Importance: The evidence for palliative care exists predominantly for patients with cancer. The effect of palliative care on important end-of-life outcomes in patients with noncancer illness is unclear. Objective: To measure the association between palliative care and acute health care use, quality of life (QOL), and symptom burden in adults with chronic noncancer illnesses. Data Sources: MEDLINE, Embase, CINAHL, PsycINFO, and PubMed from inception to April 18, 2020. Study Selection: Randomized clinical trials of palliative care interventions in adults with chronic noncancer illness. Studies involving at least 50% of patients with cancer were excluded. Data Extraction and Synthesis: Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all trials. All outcomes were analyzed using random-effects meta-analysis. Main Outcomes and Measures: Acute health care use (hospitalizations and emergency department use), disease-generic and disease-specific quality of life (QOL), and symptoms, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-Palliative Care scale (range, 0 [worst] to 184 [best]; minimal clinically important difference, 9 points) and symptoms translated to units of the Edmonton Symptom Assessment Scale global distress score (range, 0 [best] to 90 [worst]; minimal clinically important difference, 5.7 points). Results: Twenty-eight trials provided data on 13 664 patients (mean age, 74 years; 46% were women). Ten trials were of heart failure (n = 4068 patients), 11 of mixed disease (n = 8119), 4 of dementia (n = 1036), and 3 of chronic obstructive pulmonary disease (n = 441). Palliative care, compared with usual care, was statistically significantly associated with less emergency department use (9 trials [n = 2712]; 20% vs 24%; odds ratio, 0.82 [95% CI, 0.68-1.00]; I2 = 3%), less hospitalization (14 trials [n = 3706]; 38% vs 42%; odds ratio, 0.80 [95% CI, 0.65-0.99]; I2 = 41%), and modestly lower symptom burden (11 trials [n = 2598]; pooled standardized mean difference (SMD), -0.12; [95% CI, -0.20 to -0.03]; I2 = 0%; Edmonton Symptom Assessment Scale score mean difference, -1.6 [95% CI, -2.6 to -0.4]). Palliative care was not significantly associated with disease-generic QOL (6 trials [n = 1334]; SMD, 0.18 [95% CI, -0.24 to 0.61]; I2 = 87%; Functional Assessment of Chronic Illness Therapy-Palliative Care score mean difference, 4.7 [95% CI, -6.3 to 15.9]) or disease-specific measures of QOL (11 trials [n = 2204]; SMD, 0.07 [95% CI, -0.09 to 0.23]; I2 = 68%). Conclusions and Relevance: In this systematic review and meta-analysis of randomized clinical trials of patients with primarily noncancer illness, palliative care, compared with usual care, was statistically significantly associated with less acute health care use and modestly lower symptom burden, but there was no significant difference in quality of life. Analyses for some outcomes were based predominantly on studies of patients with heart failure, which may limit generalizability to other chronic illnesses.

Supporting patient access to medicines in community palliative care: on-line survey of health professionals' practice, perceived effectiveness and influencing factors.

BACKGROUND: Patient access to medicines at home during the last year of life is critical for symptom control, but is thought to be problematic. Little is known about healthcare professionals' practices in supporting timely medicines access and what influences their effectiveness. The purpose of the study was to evaluate health professionals' medicines access practices, perceived effectiveness and influencing factors. METHODS: On-line questionnaire survey of health care professionals (General Practitioners, Community Pharmacists, community-based Clinical Nurse Specialists and Community Nurses) delivering end-of-life care in primary and community care settings in England. Quantitative data were analysed using descriptive statistics. RESULTS: One thousand three hundred twenty-seven responses were received. All health professional groups are engaged in supporting access to prescriptions, using a number of different methods. GPs remain a predominant route for patients to access new prescriptions in working hours. However, nurses and, increasingly, primary care-based pharmacists are also actively contributing. However, only 42% (160) of Clinical Nurse Specialists and 27% (27) of Community Nurses were trained as prescribers. The majority (58% 142) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Satisfaction with access to shared patient records to facilitate medicines access was low: 39% (507) were either Not At All or only Slightly satisfied. Out-of-hours specialist cover was reported by less than half (49%; 656) and many General Practitioners and pharmacists lacked confidence advising about out-of-hours services. Respondents perceived there would be a significant improvement in pain control if access to medicines was greater. Those with shared records access reported significantly lower pain estimates for their caseload patients. CONCLUSIONS: Action is required to support a greater number of nurses and pharmacists to prescribe end-of-life medicines. Solutions are also required to enable shared access to patient records across health professional groups. Coverage and awareness of out-of-hours services to access medicines needs to be improved.