Objective: To identify sociodemographic and clinical factors associated with withholding or withdrawing life-sustaining treatment (WWLST) for extremely low gestational age neonates.
Design: Observational study of prospectively collected registry data from 19 National Institute of Child Health and Human Development Neonatal Research Network centres on neonates born at 22–28 weeks gestation who died >12 hours through 120 days of age during 2011–2016. Sociodemographic and clinical factors were compared between infants who died following WWLST and without WWLST.
Results: Of 1168 deaths, 67.1% occurred following WWLST. Withdrawal of assisted ventilation (97.4%) was the primary modality. WWLST rates were inversely proportional to gestational age. Life-sustaining treatment was withheld or withdrawn more often for non-Hispanic white infants than for non-Hispanic black infants (72.7% vs 60.4%; 95% CI 1.00 to 1.92) or Hispanic infants (72.7% vs 67.2%; 95% CI 1.32 to 3.72). WWLST rates varied across centres (38.6–92.6%; p<0.001). The centre with the highest rate had adjusted odds 4.89 times greater than the average (95% CI 1.18 to 20.18). The adjusted odds of WWLST were higher for infants with necrotiing enterocolitis (OR 1.77, 95% CI 1.21 to 2.59) and severe brain injury (OR 1.98, 95% CI 1.44 to 2.74).
Conclusions: Among infants who died, WWLST rates varied widely across centres and were associated with gestational age, race, ethnicity, necrotiing enterocolitis, and severe brain injury. Further exploration is needed into how race, centre, and approaches to care of infants with necrotiing enterocolitis and severe brain injury influence WWLST.
Background: Current policies recommend integrating home care and palliative care to enable patients to remain at home and avoid unnecessary hospital admission and emergency department (ED) visits. The Italian health care system had implemented integrated palliative home care (IHPC) services to guarantee a comprehensive, coordinated approach across different actors and to reduce potentially avoidable ED visits. This study aimed to analyze the trajectories of ED visit rates among patients receiving IHPC in the Italian healthcare system, as well as the association between socio-demographic, health supply, and clinical factors.
Methods: A pooled, cross-sectional, time series analysis was performed in a large Italian region in the period 2013–2017. Data were taken from two databases of the official Italian National Information System: Home Care Services and ED use. A clinical record is opened at the time a patient is enrolled in IHPC and closed after the last service is provided. Every such clinical record was considered as an IHPC event, and only ED visits that occurred during IHPC events were considered.
Results: The 20,611 patients enrolled in IHPC during the study period contributed 23,085 IHPC events; =1 ED visit occurred during 6046 of these events. Neoplasms accounted for 89% of IHPC events and for 91% of ED visits. Although there were different variations in ED visit rates during the study period, a slight decline was observed for all diseases, and this decline accelerated over time (b = - 0.18, p = 0.796, 95% confidence interval [CI] = - 1.59;1.22, b-squared = - 1.25, p < 0.001, 95% CI = -1.63;-0.86). There were no significant predictors among the socio-demographic factors (sex, age, presence of a non-family caregiver, cohabitant family members, distance from ED), health supply factors (proponent of IHPC) and clinical factors (prevalent disorder at IHPC entry, clinical symptoms).
Conclusion: Our results show that use of ED continues after enrollment in IHPC, but the trend of this use declines over time. As no significant predictive factors were identified, no specific interventions can be recommended on which the avoidable ED visits depend.
OBJECTIVE: To determine factors associated with the utilization of palliative care (PC) in patients with metastatic gynecologic cancer who died while hospitalized.
METHODS: Data were abstracted from the National Inpatient Sample database for patients with cervical, uterine, and ovarian cancers from 2005 to 2011. Chi-squared and logistic regression models were used for statistical analyses.
RESULTS: Of 4559 women (median age: 65 years; range: 19-102), 1066 (23.4%) utilized PC. Patients were 24.9% low socioeconomic status (SES), 23.9% low-middle, 23.7% middle-high, and 25.1% high SES. Medicare, Medicaid, and private insurance coverage were listed at 46.2%, 37.5%, 11.3% of patients; 36.2%, 21.1%, 18.1%, 24.6% were treated in the South, West, Midwest, and Northeast. Over the 7 year study period, the use of PC increased from 12% to 45%. Older age (odds ratio [OR]: 1.36; 95% CI: 1.11-1.68; P = .003), high SES (OR: 1.41; 95% CI: 1.12-1.78; P = .003), more recent treatment (OR: 9.22; 95% CI: 6.8-12.51; P < .0001), private insurance (OR: 1.81; 95% CI: 1.46-2.25; P < .001), and treatment at large-volume hospitals (OR: 1.36; 95% CI: 1.04-1.77; P = .02), Western (OR: 2.00; 95% CI: 1.61-2.49; P < .001) and Midwestern hospitals (OR: 1.35; 95% CI: 1.08-1.68; P = .001) were associated with higher utilization of PC.
CONCLUSIONS: The use of inpatient PC for patients with gynecologic cancer increased over time. The lower utilization of PC for terminal illness was associated with younger age, lower SES, government-issued insurance coverage, and treatment in Southern and smaller volume hospitals, and warrants further attention.
Background: Demographic and contextual factors are associated with quality of life (QoL) in older adults and prediagnosis QoL among older adults has important implications for supportive care in older cancer patients.
Objective: To examine whether lower educational attainment is associated with poorer QoL among community dwelling older adults just before their diagnosis of lung cancer in a nationally representative sample.
Design: his study used the Surveillance, Epidemiology, and End Results (SEER)-Medicare Health Outcomes Survey (MHOS) dataset, which provides cancer registry data linked with survey data for Medicare Advantage enrollees.
Subjects: Adults 65 years and older at time of diagnosis with first or only primary lung cancer and with at least one survey before their cancer diagnosis.
Measurements: Level of education attained was categorized as less than high school (
Results: higher education was positively associated with prediagnosis mental and physical QoL. Other factors associated with lower QoL were Medicaid status and number of comorbidities.
Conclusions: Particular attention should focus on identifying and addressing QoL needs among vulnerable older adults to bolster QoL to mitigate its potential impact on prognosis following a lung cancer diagnosis.
Background: The “Promoting Resilience in Stress Management” intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Aim: Utilizing data from a randomized clinical trial of Promoting Resilience in Stress Management versus Usual Care, we examined whether response to Promoting Resilience in Stress Management differed across key sociodemographic characteristics.
Design: Adolescents and young adults with cancer completed patient-reported outcome measures of resilience, hope, benefit-finding, quality of life, and distress at enrollment and 6 months. Participants were stratified by sex, age, race, and neighborhood socioeconomic disadvantage based on home address (Area Deprivation Index scores with 8–10 = most disadvantaged). Differences in the magnitude of effect sizes between stratification subgroups were noted using a conservative cutoff of d > 0.5.
Setting/participants: participants were 12 to 25 years old, English-speaking, and receiving cancer care at Seattle Children’s Hospital.
Results: In total, 92 adolescents and young adults (48 Promoting Resilience in Stress Management, 44 Usual Care) completed baseline measures. They were 43% female, 73% 12 to 17 years old, 64% White, and 24% most disadvantaged. Effect sizes stratified by sex, age, and race were in an expected positive direction and of similar magnitude for the majority of outcomes with some exceptions in magnitude of treatment effect. Those who lived in less disadvantaged neighborhoods benefited more from Promoting Resilience in Stress Management, and those living in most disadvantaged neighborhoods benefited less.
Conclusion: The “Promoting Resilience in Stress Management” intervention demonstrated a positive effect for the majority of outcomes regardless of sex, age, and race. It may not be as helpful for adolescents and young adults living in disadvantaged neighborhoods. Future studies must confirm its generalizability and integrate opportunities for improvement by targeting individual needs.
BACKGROUND: Socio-economic factors play important roles in place of death. However, up-to-date knowledge on socio-economic determinants for place of death is warranted including analysis of collinearity between socio-economic determinants.
AIM: To examine associations between socio-economic determinants (social class, deprivation level in area of residence, income, education, occupation, urbanisation) and place of death among adult patients with life-limiting illnesses. Furthermore, to describe how these factors are operationalised and examined for collinearity.
DESIGN: A systematic review was performed (PROSPERO, record: CRD42018091218) and quality was assessed using the Newcastle-Ottawa Scale.
DATA SOURCES: A comprehensive search of PubMed, Embase, CINAHL, Scopus and PsycINFO was conducted for studies published from 1 January 2008 until the date of the search (23 March 2018) in English or Scandinavian languages.
RESULTS: Of the 1599 unique citations identified, 34 studies were eligible. Dying at home was to a high degree associated with better financial situation and living in rural areas. Furthermore, hospital death was associated with a high level of deprivation in the area of residence and being employed. Regarding educational level, we found mixed and inconclusive results.
CONCLUSION: Inequalities concerning place of death were found, and attention towards socio-economic inequality concerning place of death is necessary, especially in patients with a poor financial status, patients living in deprived and metropolitan areas and patients who are employed. Furthermore, we found a low degree of assessment for collinearity and adjustment of socio-economic variables. These issues should be considered in planning of future studies of socio-economic determinants for place of death.
Background: Although studies suggest that most people prefer to die at home, not enough is known about place of death patterns by cause of death considering sociodemographic factors. The objective of this study was to determine the place of death in the population and to analyze the sociodemographic variables and causes of death associated with home as the place of death.
Methods: Cross-sectional population-based study. All death certificate data on the residents in Spain aged 15 or over who died in Spain between 2012 and 2015 were included. We employed multinomial logistic regression to explore the relation between place of death, sociodemographic variables and cause of death classified according to the International Classification of Diseases, 10th revision, and to conditions needing palliative care.
Results: Over half of all deaths occurred in hospital (57.4%), representing double the frequency of deaths that occurred at home. All the sociodemographic variables (sex, educational level, urbanization level, marital status, age and country of birth) were associated with place of death, although age presented the strongest association. Cause of death was the main predictor with heart disease, neurodegenerative disease, Alzheimer's disease, dementia and senility accounting for the highest percentages of home deaths.
Conclusions: Most people die in hospital. Cause of death presented a stronger association with place of death than sociodemographic variables; of these latter, age, urbanization level and marital status were the main predictors. These results will prove useful in planning end-of-life care that is more closely tailored to people's circumstances and needs.
General well-being is known to deteriorate sharply at the end of life. However, it is an open question how rates of terminal change differ across affective and evaluative facets of well-being and if individual difference correlates operate in facet-specific ways. We examined how discrete affective states (happy, angry, fearful, sad) and satisfaction with key life domains (health, leisure, family) change as people approach death and how differences in end-of-life trajectories are related to sociodemographic (age, gender, education), physical health (disability, body mass index, physician visits), and psychosocial characteristics (perceived control, social orientation, living with a partner). We applied growth models to 9-year annual longitudinal data of 864 participants (age at death: M = 75 years, 41% women) from the nationwide German Socio-Economic Panel (SOEP). Findings revealed commonalities and specificities in terminal change: Six of seven facets became increasingly fragile late in life (6 to 35 times steeper terminal change than age change), but at vastly different rates of change (e.g., steep declines in happiness and satisfaction with health vs. stability in anger) and at different levels at which changes occurred. Commonalities and differences also emerged for the correlates: Those who perceived more control over their lives experienced generally more favorable late-life affect and satisfaction trajectories, whereas other correlates operated in more facet-specific ways. For example, participants living with a partner were happier and more satisfied with family life throughout their last years, but also reported more fear and steeper increases in sadness, a picture of bittersweet emotions at the end of life.
OBJECTIVE: To measure and assess differences by educational level in the place of death for cancer patients, and to determine whether patterns of geographical disparities are associated with access to palliative care services in the municipality of residence.
METHOD: We analysed the death certificates of adults (older than 24) who died of cancer (ICD-10 C00 to C97) in Spain during 2015, either at home, in hospital or in a long-term care centre. Of the 105,758 individuals included in the study population, 75.2% lived in one of the 746 identifiable municipalities (more than 10,000 inhabitants). This individual database was combined with three economic databases at municipal level and with a directory of palliative care resources published by the Sociedad Española de Cuidados Paliativos. Multilevel models were estimated to predict the place of death according to individual characteristics. Generalised least squares regression models were then applied to the municipal effects estimated in the first stage.
RESULTS: The probability of dying in long-term care centre decreases as levels of education increase; the probability of dying at home, rather than in hospital, is higher for patients with higher education. Dying in hospital is an urban phenomenon. There are large differences between Spanish regions. Access to palliative services is only of marginal significance in accounting for the systematic differences observed between municipalities.
CONCLUSIONS: Developing specific plans for palliative care, with an active role being played by primary care teams, may help improve end-of-life care in Spain.
Patient demographics and characteristics are essential components associated with length of stay in hospice. Race, age, gender, health insurance status, income level, and location of hospice care services are indicators that are associated with differing lengths of stay. Hospice care demand is on the rise, and with 70 million boomers retiring in the next few decades, demand is expected to increase. It is because of demand that exploring the factors that affect a patient's length of stay is essential for understanding beneficiary care and family experience. These insights are key for medical and clinical practitioners in providing hospice patients and their families with the intended benefits and care of the Medicare Hospice Program. This study uses Medicare hospice services data from 2006 to 2014 to examine how race, age, gender, health insurance status, income level, and location before entering acute care are associated with acute care lengths of stay. Overall, this study found that race, age, gender, health insurance status, and income level have a statistically significant association with whether a patient was from home-based or from facility-based hospice. These findings suggest that racial disparities remain a relevant matter in access to hospice, palliative care, and length of stay and can assist future research in moving knowledge forward about the association between length of stay and patient characteristics.
Cette première édition de l'Atlas des soins palliatifs et de la fin de vie en France a pour ambition de contribuer à la mise en valeur des données sur les soins palliatifs et la fin de vie qui sont encore trop peu visibles et trop disparates. L'Atlas a aussi pour objectif de fournir et de mettre à jour au niveau national et régional des données fiables et exhaustives sur le développement des soins palliatifs.
INTRODUCTION: End-of-life and palliative care are important aspects of trauma care and are not well defined. This analysis evaluates the racial and socioeconomic disparities in terms of utilization of hospice services for critically ill trauma patients.
METHODS: Trauma patients =15 years old from 2012 to 2015 were queried from the National Trauma Databank. Chi-square and multivariate logistic regression analyses for disposition to hospice were performed after controlling for age, gender, comorbidities, injury severity, insurance, race, and ethnicity. Negative binomial regression analysis with margins for length of stay (LOS) was calculated for all patients discharged to hospice.
RESULTS: Chi-square analysis of 2 966 444 patient's transition to hospice found patients with cardiac disease, bleeding and psychiatric disorders, chemotherapy, cancer, diabetes, cirrhosis, respiratory disease, renal failure, cirrhosis, and cerebrovascular accident (CVA) affected transfer ( P < .0001). Logistic regression analysis after controlling for covariates showed uninsured patients were discharged to hospice significantly less than insured patients (odds ratio [OR]: 0.71; P < .0001). Asian, African American, and Hispanic patients all received less hospice care than Caucasian patients (OR: 0.65, 0.60, 0.73; P < .0001). Negative binomial regression analysis with margins for LOS showed Medicare patients were transferred to hospice 1.2 days sooner than insured patients while uninsured patients remained in the hospital 1.6 days longer ( P < .001). When compare to Caucasians, African Americans patients stayed 3.7 days longer in the hospital and Hispanics 2.4 days longer prior to transfer to hospice ( P < .0001). In all patients with polytrauma, African Americans stayed 4.9 days longer and Hispanics 2.3 days longer as compared to Caucasians ( P < .0001).
CONCLUSIONS: Race and ethnicity are independent predictors of a trauma patient's transition to hospice care and significantly affect LOS. Our data demonstrate prominent racial and socioeconomic disparities exist, with uninsured and minority patients being less likely to receive hospice services and having a delay in transition to hospice care when compared to their insured Caucasian counterparts.
BACKGROUND: Major obstacles exist in the care of patients at the end of life: lack of time, poor or inadequate communication, and lack of knowledge in providing care. Three possible nursing roles in care decision-making were investigated: Information Broker, Supporter, and Advocate. The purpose of this study was to examine obstacles faced by oncology nurses in providing end-of-life (EOL) care and to examine roles of nurses in providing care.
METHODS: A descriptive, cross-sectional, correlational design was applied. The study was conducted at two major University Hospitals of Oncology in Lithuania that have a combined total of 2365 beds. The study sample consisted of 239 oncology registered nurses. Data collection tool included a questionnaire about assessment of obstacles and supportive behaviors, nursing roles, and socio-demographic characteristics.
RESULTS: The two items perceived by respondents as the most intense obstacles to providing EOL care were The nurse's opinion on immediate patient care is not welcome, valued or discussed and. Family has no access to psychological help after being informed about the patient's diagnosis. The majority of respondents self-assigned the role of Supporter.
CONCLUSIONS: Major obstacles in providing care included the nurse's opinion that immediate patient care was not valued, lack of nursing knowledge on how to treat the patient's grieving family, and physicians who avoided conversations with the patient and family members about diagnoses and prospects. In EOL care nurses most frequently acted as Supporters and less frequently as Advocates.
BACKGROUND: Understanding patients' decision control preferences is important in providing quality cancer care. Patients' decisional control preference can be either active (patients prefer to make decisions themselves), shared (collaborative between patient, their physician, and/or family), or passive (patients prefer that the decisions are made by either the physician and/or their family).
AIM: To determine the frequency and predictors of passive decision control preferences among advanced cancer patients. We also determined the concordance between actual decision-making and decision control preferences and its association with patient satisfaction.
DESIGN: In this cross-sectional survey of advanced cancer patients referred to palliative care across 11 countries, we evaluated sociodemographic variables, Control Preference Scale, and satisfaction with the decisions and care.
RESULTS: A total of 1490 participants were evaluable. Shared, active, and passive decision control preferences were 33%, 44%, and 23%, respectively. Passive decision control preferences (odds ratio, p value) was more frequent in India (4.34, <0.001), Jordan (3.41, <0.001), and France (3.27, <0.001). Concordance between the actual decision-making and decision control preferences was highest in the United States (k = 0.74) and lowest in Brazil (0.34). Passive decision control preference was significantly associated with (odds ratio per point, p value) better performance status (0.99/point, 0.017), higher education (0.64, 0.001), and country of origin (Brazil (0.26, <0.0001), Singapore (0.25, 0.0003), South Africa (0.32, 0.0002), and Jordan (2.33, 0.0037)).
CONCLUSION: Passive decision control preferences were less common (23%) than shared and active decision control preference even among developing countries. Significant predictors of passive decision control preferences were performance status, education, and country of origin.
BACKGROUND: Care-dependency constitutes an important issue with regard to the approval of end-of-life decisions, yet attitudes towards assisted suicide and euthanasia are understudied among care-dependent older adults. We assessed attitudes towards assisted suicide and euthanasia and tested empirical correlates, including socio-demographics, religiosity, physical illness, psychological distress and social isolation.
METHODS: A nationwide cross-sectional survey among older care allowance recipients (50+) in private households in Austria was conducted in 2016. In computer-assisted personal interviews, 493 respondents were asked whether or not they approved of the availability of assisted suicide and euthanasia in case of long-term care dependency and whether or not they would consider using assisted suicide or euthanasia for themselves. Multiple logistic regression analysis was used to assess the impact of potential determinants of attitudes towards assisted suicide and euthanasia.
RESULTS: About a quarter (24.8-26.0%) of the sampled care-dependent older adults approved of the availability of assisted suicide and euthanasia respectively indicated the will to (hypothetically) make use of assisted suicide or euthanasia. Attitudes towards assisted suicide were most favourable among care-dependent older adults living in urban areas, those who did not trust physicians, those who reported active suicide ideation, and individuals with a strong fear of dying. With regard to euthanasia, living alone, religiosity and fear of dying were the central determinants of acceptance.
CONCLUSIONS: Positive attitudes towards and will to (hypothetically) use assisted suicide and euthanasia were expressed by a substantial minority of care-dependent older adults in Austria and are driven by current psychological suffering and fear of the process of dying in the (near) future. Community-based psychosocial care should be expanded to address psychological distress and fears about end-of-life issues among care-dependent older adults.
Growing evidence suggests a low engagement in advance care planning (ACP) among ethnic minorities in the U.S. The purpose of this study was to synthesize findings from prior research about ACP among ethnic minorities. An extensive literature search was conducted using multiple electronic databases. After applying inclusion criteria, 26 studies were included. Four categories of facilitators and barriers to ACP were identified: (1) Socio-demographic factors, (2) health status, literacy and experiences, (3) cultural values, and (4) spirituality. Socio-demographic factors showed inconsistent findings regarding their association with ACP engagement. Worse health status and knowledge about ACP are common facilitators across ethnic minority groups, whereas mistrust toward the health care system was a barrier only for Blacks. Collectivistic cultural values influenced ACP engagement among Latinos and Asian Americans; however, spirituality/religion played an important role among Blacks. The implications for culturally competent approaches to promote ACP and future research directions are discussed.
Few studies have yet examined subgroups among children (aged 8-18) confronted with the death of a close loved one, characterized by different profiles of symptoms of prolonged grief disorder (PGD) and symptoms of bereavement-related posttraumatic stress disorder (PTSD). This study sought to identify such subgroups and socio-demographic and loss-related variables associated with subgroup membership. We used data from 332 children, most of whom (> 80%) were confronted with the death of a parent, mostly (> 50%) due to illness. Latent class analysis revealed three classes of participants: a resilient class (38.6%), a predominantly PGD class (35.2%), and a combined PGD/PTSD class (26.2%). Class membership was associated with self-rated levels of depression and functional impairment, and parent-rated behavioural problems. No significant between-class differences on demographics or loss-related variables were found. The current findings of distinct classes of PGD, and PGD plus PTSD attest to the construct validity of PGD as a distinct disorder, and can inform theory building and the development of diagnostic instruments relevant to children with pervasive distress following loss.
CONTEXT: Community-based palliative care programs are appearing in the U.S. Many of these programs, particularly those in large cities, serve highly diverse populations. Information about the sources of variation in the conditions that drive illness burden, like symptom distress, may be useful in program planning.
OBJECTIVES: To characterize variation in symptom distress among highly diverse patients referred for palliative care in an urban setting.
METHODS: This is a retrospective cross-sectional survey of data obtained from patients at the time of enrollment in a community-based palliative care program. Symptom distress was measured using the Condensed Memorial Symptom Assessment Scale. Severe distress was defined as reporting either "quite a bit"/"very much" or "frequently"/"almost constantly" for one or more symptoms. Multivariate analysis evaluated the associations between symptom distress and sources of patient variability.
RESULTS: Patients (n=1,532) were 72.2 years on average; 60.0% were women, 56.4% were African-American or Hispanic, and 30.8% were non-English speaking. Most had cancer or congestive heart failure (68.6%); 90.2% had a Karnofsky Performance Status (KPS) score of 40-70. The most prevalent symptoms were fatigue (71.8%), pain (47.3%), and sadness (41.6%); the most distressing symptoms were fatigue (58.5%), worrying (54.8%), and weight loss (52.1%). In multivariate analyses, Caucasian race, non-Asian language; low KPS scores, and cancer diagnosis predicted severe symptom distress.
CONCLUSIONS: In a diverse urban population receiving community-based palliative care, symptoms were highly prevalent and distressing, and both sociodemographic and medical factors predicted severe distress. Program planning should consider the needs of subpopulations at risk for high symptom burden.
Cette recherche examine l'incidence des soins informels sur les conditions de travail et la qualité de vie de l'aidant en fonction de caractéristiques sociodémographiques aux États-Unis. Les données sont tirées de l'enquête représentative Travail, Famille et Lien communautaire (WFCN) qui a été menée auprès de 4200 adultes âgés de 18 à 69 ans en 2006. L'échantillon analysé ici concerne 2674 aidants familiaux de parents âgés ou handicapés. Plusieurs variables sont relevées : le sexe, l'ethnie, le statut d'immigrant, le niveau d'étude. Les conséquences de l'aide informelle sur le travail peuvent être positives (compréhension et soutien des collègues, aménagement des horaires) ou négatives (baisse de salaire, temps partiel imposé, perte d'emploi) et dépendent fortement des caractéristiques sociales. Ainsi les femmes hispaniques, immigrées de la première génération ont les conditions de travail les plus dures.
Origine : BDSP. Notice produite par FNG sR0x7GqB. Diffusion soumise à autorisation
Ce numéro de Populations et sociétés rassemble plusieurs données sur les orphelins en France : orphelins de mère, de père ou des deux. Il précise également que les orphelins évoluent dans des familles monoparentales et qu'il y en a plus dans le milieu ouvrier que dans celui des cadres.