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Disparities and determinants of place of death: Insights from the Utah Population Database
Abstract
To better understand determinants and potential disparities in end of life, we model decedents' place of death with explanatory variables describing familial, social, and economic resources. A retrospective cohort of 204,041 decedents and their family members are drawn from the Utah Population Database family caregiving dataset. Using multinomial regression, we model place of death, categorized as at home, in a hospital, in another location, or unknown. The model includes family relationship variables, sex, race and ethnicity, and a socioeconomic status score, with control variables for age at death and death year. We identified the effect of a family network of multiple caregivers, with 3+ daughters decreasing odds of a hospital death by 17 percent (OR: 0.83 [0.79, 0.87], p < 0.001). Place of death also varies significantly by race and ethnicity, with most nonwhite groups more likely to die in a hospital. These determinants may contribute to disparities in end of life.
... This retrospective cohort study focused on 43,405 individuals in the Utah Caregiving Population Science (Utah C-PopS) cohort 13,14 who died in a Utah NH of natural causes between 1998 and 2016. The Utah C-PopS cohort is derived from the Utah Population Database [15][16][17][18] which is a statewide population health research database that links individual-level administrative and health data to spousal and FDF members' data through a population pedigree (genealogy) structure. ...
Background: Little is known about nursing home (NH) residents' family characteristics despite the important role families play at end-of-life (EOL).
Objective: To describe the size and composition of first-degree families (FDFs) of Utah NH residents who died 1998–2016 (n = 43,405).
Methods: Using the Utah Population Caregiving Database, we linked NH decedents to their FDF (n = 124,419; spouses = 10.8%; children = 55.3%; siblings = 32.3%) and compared sociodemographic and death characteristics of those with and without FDF members (n = 9424).
Results: Compared to NH decedents with FDF (78.3%), those without (21.7%) were more likely to be female (64.7% vs. 57.1%), non-White/Hispanic (11.2% vs. 4.2%), less educated (<9th grade; 41.1% vs. 32.4%), and die in a rural/frontier NH (25.3% vs. 24.0%, all p < 0.001). Despite similar levels of disease burden (Charlson Comorbidity score 3 + 37.7% vs. 38.0%), those without FDF were more likely to die from cancer (14.2% vs. 12.4%), Chronic Obstructive Pulmonary Disease (COPD) (6.0% vs. 4.0%), and dementia (17.1% vs. 16.6%, all p < 0.001), and were less likely to have 2+ hospitalizations at EOL (20.5% vs. 22.4%, p < 0.001).
Conclusions: Among NH decedents, those with and without FDF have different sociodemographic and death characteristics—factors that may impact care at EOL. Understanding the nature of FDF relationship type on NH resident EOL care trajectories and outcomes is an important next step in clarifying the role of families of persons living and dying in NHs.
There has been a systematic and largely unconscious neglect of gender in palliative care research, practice and policy. This is despite significant, although previously uncollated, evidence that gender influences almost all aspects of end-of-life preferences, experiences and care. The social situations of women, transgender people and men often differ from one another while also intersecting in complex ways with sex differences rooted in biology. If palliative care is to meet its aspiration of providing universal benefit, it urgently needs to address a range of gender inequalities currently (re)produced at the level of the laboratory all the way through to government departments. In this call to arms, we spotlight specific instances where gender inequalities have been documented, for example, regarding end-of-life caregiving, end-of-life intervention and palliative care access and benefit. We highlight how gender inequalities intersect with other social determinants of health including ethnicity and economic status to exacerbate situations of marginality. We conclude by offering some practical steps that can be taken to support the discipline to adopt a more critical gender lens to support more equitable research, policy and practice.
Importance
Although hospice use is increasing and patients in the US are increasingly dying at home, racial disparities in treatment intensity at the end of life, including hospice use, remain.
Objective
To examine differences between Black and White patients in end-of-life care in a population sample with well-characterized causes of death.
Design, Setting, and Participants
This study used data from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, an ongoing population-based cohort study with enrollment between January 25, 2003, and October 3, 2007, with linkage to Medicare claims data. Multivariable logistic regression models were used to examine racial and regional differences in end-of-life outcomes and in stroke mortality among 1212 participants with fee-for-service Medicare who died between January 1, 2013, and December 31, 2015, owing to natural causes and excluding sudden death, with oversampling of Black individuals and residents of Southeastern states in the United States. Initial analyses were conducted in March 2019, and final primary analyses were conducted in February 2020.
Main Outcomes and Measures
The primary outcomes of interest were hospice use of 3 or more days in the last 6 months of life derived from Medicare claims files. Other outcomes included multiple hospitalizations, emergency department visits, and use of intensive procedures in the last 6 months of life. Cause of death was adjudicated by an expert panel of clinicians using death certificates, proxy interviews, autopsy reports, and medical records.
Results
The sample consisted of 1212 participants (630 men [52.0%]; 378 Black individuals [31.2%]; mean [SD] age at death, 81.0 [8.6] years) of 2542 total deaths. Black decedents were less likely than White decedents to use hospice for 3 or more days (132 of 378 [34.9%] vs 385 of 834 [46.2%]; P < .001). After stratification by cause of death, substantial racial differences in treatment intensity and service use were found among persons who died of cardiovascular disease but not among patients who died of cancer. In analyses adjusted for cause of death (dementia, cancer, cardiovascular disease, and other) and clinical and demographic variables, Black decedents were significantly less likely to use 3 or more days of hospice (odds ratio [OR], 0.72; 95% CI, 0.54-0.96) and were more likely to have multiple emergency department visits (OR, 1.35; 95% CI, 1.01-1.80) and hospitalizations (OR, 1.39; 95% CI, 1.02-1.89) and undergo intensive treatment (OR, 1.94; 95% CI, 1.40-2.70) in the last 6 months of life compared with White decedents.
Conclusions and Relevance
Despite the increase in the use of hospice care in recent decades, racial disparities in the use of hospice remain, especially for noncancer deaths. More research is required to better understand racial disparities in access to and quality of end-of-life care.
Background:
Socioeconomic inequalities in access to, and utilization of medical care have been shown in many jurisdictions. However, the extent to which they exist at end-of-life (EOL) remains unclear.
Methods:
Studies in MEDLINE, EMBASE, CINAHL, ProQuest, Web of Science, Web of Knowledge, and OpenGrey databases were searched through December 2019 with hand-searching of in-text citations. No publication date or language limitations were set. Studies assessing SES (e.g. income) in adults, correlated to EOL costs in last year(s) or month(s) of life were selected. Two independent reviewers performed data abstraction and quality assessment, with inconsistencies resolved by consensus.
Results:
A total of twenty articles met eligibility criteria. Two meta-analyses were performed on studies that examined total costs in last year of life - the first examined costs without adjustments for confounders (n = 4), the second examined costs that adjusted for confounders, including comorbidities (n = 2). Among studies which did not adjust for comorbidities, SES was positively correlated with EOL costs (standardized mean difference, 0.13 [95% confidence interval, 0.03 to 0.24]). However, among studies adjusting for comorbidities, SES was inversely correlated with EOL expenditures (regression coefficient, -177.69 to -$124.19], 2015 United States Dollars (USD)). Higher ambulatory care and drug expenditure were consistently found among higher SES patients irrespective of whether or not comorbidity adjustment was employed.
Conclusion:
Overall, an inequality leading to higher end-of-life expenditure for higher SES patients existed to varying extents, even within countries providing universal health care, with greatest differences seen for outpatient and prescription drug costs. The magnitude and directionality of the relationship in part depended on whether comorbidity risk-adjustment methodology was employed.
Objective:
Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers' experiences and perspectives toward making surrogate decisions is needed.
Methods:
This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008).
Results:
Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates' experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults' wishes, and negative impact.
Conclusion:
Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances.
Practice implications:
This review informs healthcare providers' awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.
Background
The impact of socioeconomic status on health has been established via a broad body of literature, largely from high-income countries. Investigative efforts in low- and middle-income countries have suffered from a lack of reporting standardization required to draw comparisons across countries of varying economic strata. In this study we aimed to evaluate the impact of socioeconomic status on emergency department outcomes in a low-income African country using international data classification systems.
Methods
This was a retrospective cohort study was conducted at a tertiary care center in northern Madagascar. Data were abstracted from paper charts into an electronic registry using Integrated Public Use Microdata Series codes for occupation, Nam-Powers-Boyd (NPB) scores for socioeconomic status, and Clinical Classifications Software ICD-9 equivalents for diagnosis. Outcome was dichotomized to the combined disposition of death or transfer directly to operating theater (OT) versus discharge. We used t-tests to compare baseline characteristics between these groups. We used chi-square analysis to test the association between occupational class and diagnosis. Finally, multivariate logistic regression analysis was performed examining the impact of NPB score on death/OT outcome, adjusting for age, gender, diagnosis and occupation.
Results
5271 patients were seen during the 21-month study period with a death/OT rate of 9.7%. Older age and male gender were more common in death/OT patients (both p<0.001), and were shown to have positive odds ratios for this outcome in multivariate modeling (p<0.006 and <0.001). Occupational class was found to influence diagnosis for all classes (p<0.001) except Sales and Office. Adjusting for these 3 factors, we found a strong independent association between NPB quartile and death/OT outcome. Relative to the 1st quartile, the odds ratio in the 4th quartile was 2.9 (p = 0.004), the 3rd quartile 1.8 (p = 0.094), and the 2nd quartile 3.1 (p<0.001).
Conclusion
To our knowledge, this is the first Malagasy study describing the relationship between socioeconomic status on emergency care outcomes. We found a stronger effect on health in this setting than in high-income countries, highlighting an important healthcare disparity. By using standardized classification systems we hope this study will serve as a model to facilitate future comparative efforts.
Background:
Thyroid cancer is the most rapidly increasing cancer in the United States, affects a young population, has high survival, and is one of the most common cancers in people under age 40. The aim of this study was to examine the risks of aging-related diseases in a statewide sample of thyroid cancer survivors who were diagnosed <40 years compared with those diagnosed ≥40 and a cancer-free sample.Methods:Thyroid cancer survivors diagnosed 1997 to 2012 were matched to up to 5 cancer-free individuals on birth year, sex, birth state, using the statewide Utah Population Database. Medical records were used to identify disease diagnoses stratified over three time periods: 1 to 5, >5 to 10, and 10+ years after cancer diagnosis. Cox proportional hazards models were used to estimate hazard ratios with adjustment on matching factors, race, body mass index, and Charlson Comorbidity Index.Results:There were 3,706 thyroid cancer survivors and 15,587 matched cancer-free individuals (1,365 cases diagnosed <40 years old). Both age groups had increased risks for multiple circulatory health conditions 1 to 5 years after cancer diagnosis compared with cancer-free individuals. Survivors <40 had a higher risk of hypertension, cardiomyopathy, and nutritional deficiencies.Conclusions:Increased risks for diseases associated with aging were observed for both age groups, with younger thyroid cancer survivors having higher risks for select diseases.Impact:As thyroid cancer survivors in this study were found to have increased risks for aging-related diseases, future studies are needed to assess what can be done to reduce the increased risks of these long-term health effects.Cancer Epidemiol Biomarkers Prev; 26(12); 1695-704. ©2017 AACR.
Studies show that most patients with advanced cancer prefer to die at home. However, not all have equal chances and the evidence is unclear on whether dying at home is better. This study aims to determine the association between place of death, health services used, and pain, feeling at peace, and grief intensity.
Mortality follow-back study of 352 cancer patients who died in hospital (n = 177) or at home (n = 175) in London, UK. Bereaved relatives identified from death registrations completed a questionnaire including validated measures of patient’s pain and peace in the last week of life and their own grief intensity. We determined factors influencing death at home, and associations between place of death and pain, peace, and grief.
Where people died was, for most (80 %), the place where they lived during their last week of life. Four factors explained >91 % of home deaths: patient’s preference, relative’s preference, home palliative care, or district/community nursing. The propensity of death at home also increased when the relative was aware of incurability and the patient discussed his/her preferences with family. Dying in hospital was associated with more hospital days, fewer general practitioner (GP) home visits, and fewer days taken off work by relatives. Adjusting for confounders, patients who died at home experienced similar pain levels but more peace in their last week of life (ordered log odds ratio 0.69, P = 0.007). Grief was less intense for their relatives than for those of patients who died in hospital (β, –0.15 around time of death and –0.14 at questionnaire completion, P = 0.02).
The study suggests that dying at home is better than hospital for peace and grief, but requires a discussion of preferences, GP home visits, and relatives to be given time off work.
Trial registration
National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.
Background:
Researchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist.
Objective:
The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender.
Methods:
We conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ(2) tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA).
Results:
As it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances.
Conclusions:
Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life.
Utah is in the midst of an unprecedented economic, demographic, and cultural transformation that has its origins in national and international trends. The cumulative impact of these trends is that Utah, along with the rest of the nation, will continue to become much more diverse in many ways, including age, culture, language, nativity, race, ethnicity, religion, and socioeconomics.
Deviations from the Gompertz law of exponential mortality increases in late-middle and early-old age are commonly neglected in overall mortality analyses. In this study, we examined mortality increase patterns between ages 40 and 85 in 16 low-mortality countries and demonstrated sex differences in these patterns, which also changed across period and cohort. These results suggest that the interaction between aging and death is more complicated than what is usually assumed from the Gompertz law and also challenge existing biodemographic hypotheses about the origin and mechanisms of sex differences in mortality. We propose a two-mortality model that explains these patterns as the change in the composition of intrinsic and extrinsic death rates with age. We show that the age pattern of overall mortality and the population heterogeneity therein are possibly generated by multiple dynamics specified by a two-mortality model instead of a uniform process throughout most adult ages.
Background:
Achieving home care and home death is increasingly used as an outcome measure of palliative care services.
Aim:
To appraise the state of the science on dying at home.
Methods:
Appraisal and narrative review developed from a plenary presentation at the European Association for Palliative Care (EAPC) 2012 meeting examining the research on variations and trends in place of death, factors associated with dying in the preferred place, presenting evidence on outcomes for those dying at home and suggesting future research questions.
Results:
Meeting patients' preferences and creating home-like environments has been a major concern for hospice and palliative care since its inception. During the 20(th) century, in many countries, hospital deaths increased and home deaths reduced. Despite the fact that this trend has been halted or reversed in some countries (notably the United States, Canada and, more recently, the United Kingdom) in the last 5-20 years, a home death is still a distant reality for the majority, even though evidence shows it is the most commonly preferred place to die. Epidemiological studies identified factors associated with home death, including affluence, patients' preferences, provision of home care and extended family support. Evidence about the benefits of home care is conflicting, but recent data suggest that holistic well-being may be greater at home.
Implications:
We call for further analyses of variations in place of care and place of death and robust studies on how patients and families formulate and change preferences over time. Regular monitoring of outcomes, quality and costs of palliative home care is urged.
Supporting and caring for each other are crucial parts of the social tissue that binds people together. In these networks, men and women hold different posi-tions: Women more often care more for others, listen more to the problems of others, and, as kin keepers, hold families together. Is this true for all life stages? And are social conditions, among other things bound to the organization of work and family, an essential explanation of these differences? Data from the sixth wave (1997) of the Panel Study of Belgian Households allow us to answer these questions. The results show that women are the glue holding social relations together. They play a central role as friends, daughters, sisters, mothers, and grandmothers throughout all stages of the life course. Similar life commitments do not reduce these gender differences but instead emphasize them even further. I nformal care is still an important requisite in society today despite many far-reaching demographical changes. One of these changes is the rise of alternative family types, such as two-income families and single-person households (Marks, 1996; Vanderleyden, 2005). For society in general, and informal care in particular, these changes have important consequences. For example, there is a rise in female paid employment and an increase in the possibility of divorce. Additionally, the growing number of singles is a heavy burden for the number of available caregivers that cannot be solved by living together with adult children (Audenaert, 2001). Another important demographical evolution is the growing life expectancy of the population. Combined with a decreased fertility rate, the declining number of available siblings, and growing geographical mobility, caring for older relatives will become even less obvious in the future (Merrill, 1997).
Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.
Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified.
Collecting data on end-of-life care retrospectively from bereaved relatives has ethical, practical and scientific challenges. QUALYCARE has been carefully designed to address these challenges in a robust and ethically sound population-based survey. By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future.
National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.
We aimed to describe socioeconomic disparities in the United States across multiple health indicators and socioeconomic groups.
Using recent national data on 5 child (infant mortality, health status, activity limitation, healthy eating, sedentary adolescents) and 6 adult (life expectancy, health status, activity limitation, heart disease, diabetes, obesity) health indicators, we examined indicator rates across multiple income or education categories, overall and within racial/ethnic groups.
Those with the lowest income and who were least educated were consistently least healthy, but for most indicators, even groups with intermediate income and education levels were less healthy than the wealthiest and most educated. Gradient patterns were seen often among non-Hispanic Blacks and Whites but less consistently among Hispanics.
Health in the United States is often, though not invariably, patterned strongly along both socioeconomic and racial/ethnic lines, suggesting links between hierarchies of social advantage and health. Worse health among the most socially disadvantaged argues for policies prioritizing those groups, but pervasive gradient patterns also indicate a need to address a wider socioeconomic spectrum-which may help garner political support. Routine health reporting should examine socioeconomic and racial/ethnic disparity patterns, jointly and separately.
When terminally ill patients become mentally incapacitated, the patient's surrogate often makes treatment decisions in collaboration with health care providers. We examine how surrogates' errors in reporting their spouse's preferences are affected by their gender, status as durable power of attorney for health care (DPAHC), whether the surrogate and spouse held discussions about end-of-life preferences, and the spouse's health status. We apply structural equation models to data from 2,750 married couples in their mid 60s who participated in the 2004 wave of the Wisconsin Longitudinal Study. Surrogates reported their spouse's preferences incorrectly 13 and 26 percent of the time in end-of-life scenarios involving cognitive impairment and physical pain, respectively. Surrogates projected their own preferences onto the spouse. Similar patterns emerged regardless of surrogate gender, surrogate status as DPAHC, marital discussions about end-of-life, or spousal health status. We discuss implications for the process of surrogate decision-making and for future research.
In accordance with Bengtson's model of intergenerational solidarity (e.g. Bengtson & Roberts, 1991), the interrelations between adult daughters' family values, their perception of the relationship quality with their parents, the support they reported to give to and to receive from their parents, and their perception of reciprocity in intergenerational support exchange were investigated for N = 265 middle-aged women in Germany. It was also asked whether the support given to parents and perceived reciprocity are related to daughters' felt burden as a result of their support. Cross-sectional, self-report data were examined with multiple and multinomial logistic regression analyses. The analyses revealed positive relations between family values, relationship quality, and support to parents. Perceived reciprocity was associated with the exchange of intergenerational support, and imbalance in support had negative effects on the relationship quality. Felt burden was predicted by the extent of support and the perceived reciprocity. However, specific correlational patterns depending on the kind of support as well as differences in the importance of mother and father occurred. The findings are discussed against the background of the meaning of family obligations and reciprocity in a Western culture.
We examine the effects of familial longevity and familial mortality on mortality rates for 10 leading causes of death in a Utah Population Database (UPDB) cohort. Familial excess longevity (FEL) and familial standardized mortality ratios (FSMR) were estimated for 666,921 individuals born from 1830 through 1963, who survived to at least age 40. Cox regression analysis shows that familial death and familial longevity have independent effects on cause-specific mortality rates for 10 leading causes of death. A family history of disease increases one's risk of dying from the same cause, whereas a family history of longevity is protective, except in the case of cancer. Families with greater longevity do not die of causes distinct from other members of the cohort, but they die from the same causes at reduced rates. Individuals from longer lived families have lower mortality from most age-related diseases including heart disease, stroke, and diabetes, but not cancer.
Repeated claims that a dwindling supply of potential caregivers is creating a crisis in care for the U.S. aging population have not been well-grounded in empirical research. Concerns about the supply of family care do not adequately recognize factors that may modify the availability and willingness of family and friends to provide care to older persons in need of assistance or the increasing heterogeneity of the older population. In this paper, we set forth a framework that places family caregiving in the context of older adults' care needs, the alternatives available to them, and the outcomes of that care. We focus on care networks, rather than individuals, and discuss the demographic and social changes that may alter the formation of care networks in the future. Last, we identify research areas to prioritize in order to better support planning efforts to care for the aging U.S. population.
Background
There are large and persistent disparities in life expectancy among racial–ethnic groups in the USA, but the extent to which these patterns vary geographically on a local scale is not well understood. This analysis estimated life expectancy for five racial–ethnic groups, in 3110 US counties over 20 years, to describe spatial–temporal variations in life expectancy and disparities between racial–ethnic groups.
Methods
We applied novel small-area estimation models to death registration data from the US National Vital Statistics System and population data from the US National Center for Health Statistics to estimate annual sex-specific and age-specific mortality rates stratified by county and racial–ethnic group (non-Latino and non-Hispanic White [White], non-Latino and non-Hispanic Black [Black], non-Latino and non-Hispanic American Indian or Alaska Native [AIAN], non-Latino and non-Hispanic Asian or Pacific Islander [API], and Latino or Hispanic [Latino]) from 2000 to 2019. We adjusted these mortality rates to correct for misreporting of race and ethnicity on death certificates and then constructed abridged life tables to estimate life expectancy at birth.
Findings
Between 2000 and 2019, trends in life expectancy differed among racial–ethnic groups and among counties. Nationally, there was an increase in life expectancy for people who were Black (change 3·9 years [95% uncertainty interval 3·8 to 4·0]; life expectancy in 2019 75·3 years [75·2 to 75·4]), API (2·9 years [2·7 to 3·0]; 85·7 years [85·3 to 86·0]), Latino (2·7 years [2·6 to 2·8]; 82·2 years [82·0 to 82·5]), and White (1·7 years [1·6 to 1·7]; 78·9 years [78·9 to 79·0]), but remained the same for the AIAN population (0·0 years [–0·3 to 0·4]; 73·1 years [71·5 to 74·8]). At the national level, the negative difference in life expectancy for the Black population compared with the White population decreased during this period, whereas the negative difference for the AIAN population compared with the White population increased; in both cases, these patterns were widespread among counties. The positive difference in life expectancy for the API and Latino populations compared with the White population increased at the national level from 2000 to 2019; however, this difference declined in a sizeable minority of counties (615 [42·0%] of 1465 counties) for the Latino population and in most counties (401 [60·2%] of 666 counties) for the API population. For all racial–ethnic groups, improvements in life expectancy were more widespread across counties and larger from 2000 to 2010 than from 2010 to 2019.
Interpretation
Disparities in life expectancy among racial–ethnic groups are widespread and enduring. Local-level data are crucial to address the root causes of poor health and early death among disadvantaged groups in the USA, eliminate health disparities, and increase longevity for all.
Funding
National Institute on Minority Health and Health Disparities; National Heart, Lung, and Blood Institute; National Cancer Institute; National Institute on Aging; National Institute of Arthritis and Musculoskeletal and Skin Diseases; Office of Disease Prevention; and Office of Behavioral and Social Science Research, US National Institutes of Health.
Background:
Younger cancer survivors may develop age-related diseases due to the cancer treatment that they undergo. The aim of this population-based study is to estimate incidence of age-related diseases besides cardiovascular disease among younger versus older B-cell non-Hodgkin's lymphoma (B-NHL) survivors compared with their respective general population cohorts.
Methods:
Survivors of B-NHL were diagnosed between 1997 and 2015 from the Utah Cancer Registry. Using the Utah Population Database, up to 5 cancer-free individuals from the general population were matched with a B-NHL survivor on sex, birth year, and state of birth. Hazard ratios (HR) for age-related disease outcomes, which were identified from medical records and statewide health care facility data, were estimated using Cox Proportional Hazards models for B-NHL survivors diagnosed at <65 years versus ≥65 years at least 5 years since B-NHL diagnosis.
Results:
Comparing 2,129 B-NHL survivors with 8,969 individuals from the general population, younger B-NHL survivors had higher relative risks of acute renal failure [HR, 2.24; 99% confidence interval (CI), 1.48-3.39; P heterogeneity = 0.017), pneumonia (HR, 2.42; 99% CI, 1.68-3.49; P heterogeneity = 0.055), and nutritional deficiencies (HR, 2.08; 99% CI, 1.48-2.92; P heterogeneity = 0.051) ≥5 years after cancer diagnosis.
Conclusion:
Younger B-NHL survivors had higher relative risks of acute renal failure, pneumonia, and nutritional deficiencies than older B-NHL survivors compared with their respective general population cohorts, ≥5 years after cancer diagnosis.
Background: Scant research has examined the relationship between family characteristics and end-of-life (EOL) outcomes despite the importance of family at the EOL. Objectives: This study examined factors associated with the size and composition of family relationships on multiple EOL hospitalizations. Design: Retrospective analysis of the Utah Population Database, a statewide population database using linked administrative records. Setting/subjects: We identified adults who died of natural causes in Utah, United States (n = 216,913) between 1998 and 2016 and identified adult first-degree family members (n = 743,874; spouses = 13.2%; parents = 3.6%; children = 51.7%; siblings = 31.5%). Measurements: We compared demographic, socioeconomic, and death characteristics of decedents with and without first-degree family. Using logistic regression models adjusting for sex, age, race/ethnicity, marital status, comorbidity, and causes of death, we examined the association of first-degree family size and composition, on multiple hospitalizations in the last six months of life. Results: Among decedents without documented first-degree family members in Utah (16.0%), 57.7% were female and 7 in 10 were older than 70 years. Nonmarried (aOR = 0.90, 95% CI = 0.88-0.92) decedents and decedents with children (aOR = 0.97, 95% CI = 0.94-0.99) were less likely to have multiple EOL hospitalizations. Family size was not associated with multiple EOL hospitalizations. Conclusions: First-degree family characteristics vary at the EOL. EOL care utilization may be influenced by family characteristics-in particular, presence of a spouse. Future studies should explore how the quality of family networks, as well as extended family, impacts other EOL characteristics such as hospice and palliative care use to better understand the EOL care experience.
Background/objectives:
The majority of end-of-life (EOL) caregiving is provided by unpaid family members. An increasing number of older adults are kinless (without close family/partnerships) and may have insufficient caregiver support to remain at home at the EOL. We therefore determined what proportion of older adults are kinless at the EOL and assessed the association of kinlessness with EOL care.
Design:
Retrospective analysis of Health and Retirement Study decedents, 2002-2015.
Setting:
US population-based sample.
Participants:
Decedents age 51+ who died within 1 year of interview (n = 3844) and subset who are community-dwelling at last interview.
Measurements:
Kinlessness was defined as lacking a spouse/partner and children. Primary outcome measure was location of death. Secondary outcome measures included contextual EOL measures such as symptom burden and caregiver support.
Results:
A total of 7.4% of decedents were kinless at the EOL. Kinless decedents were more likely to be female, nonwhite, enrolled in Medicaid, living alone, or living in a nursing home prior to death. Although community-dwelling kinless decedents received fewer hours of caregiving per week at the EOL (34.7 vs. 56.2, p < 0.05) and were more likely to die in nursing homes (18.1% vs. 10.3%, p < 0.05) than those with kin, they did not have higher EOL symptom burden or treatment intensity (e.g., intensive care unit use). In multinomial logistic analysis controlling for demographic and illness characteristics, kinless decedents living in the community before death had a twofold increased risk of dying in the nursing home (odds ratio [OR] = 2.02 [95% confidence interval (CI) = 1.09-3.72]) and a trend toward increased risk of hospital death (OR = 1.60 [95% CI = 0.96-2.69]) versus home setting.
Conclusions:
Kinless individuals are more likely to die in nursing homes, even if they are living in the community in their last year of life. Expanded long-term care services and policies are needed to enable all older adults regardless of their family support systems to receive high-quality EOL care.
Context:
There is no clear definition of what constitutes a good death or its features. Patients, caregivers, physicians, and relatives have different notions of a good death. Discussions have been driven by academic perspectives, with little research available on the patients' perspectives.
Objectives:
To explore the notions of a good death from the patients' perspective.
Methods:
A systematic literature search was conducted up to November 2017 using CINAHL®, MEDLINE®, EMBASE®, and PsycINFO® databases. Search terms used were "quality of death," "good death," "quality of dying," or "good dying." Scientific empirical studies that included the exploration of the notion of a good death in adult patients with advanced and life-threatening diseases were selected separately by two researchers. Hawker's et al. criteria were used to assess the quality of articles. The analysis was conducted using a thematic analysis.
Results:
Two thousand six hundred and fifty two titles were identified; after elimination of duplicates, screening, and final selection, 29 relevant publications remained for analysis. Sample populations included patients with terminal diseases (AIDS, cardiovascular disease, and cancer). Core elements for a "good death" included control of pain and symptoms, clear decision-making, feeling of closure, being seen and perceived as a person, preparation for death, and being still able to give something to others; whereas other factors such as culture, financial issues, religion, disease, age, and life circumstances were found to shape the concept across groups. Studies agree on the individuality of death and dying while revealing a diverse set of preferences, regarding not only particular attributes but also specific ways in which they contribute to a good death.
Conclusions:
Although sharing common core elements, patients' notions of good death are individual, unique, and different. They are dynamic in nature, fluctuating within particular groups and during the actual process of dying. Formal and informal caregivers should carefully follow-up and respect the patient's individual concepts and preferences regarding death and dying, while attending to shared core elements, to better adjust clinical decisions.
Background:
Deficiencies in older people's social relationships (including loneliness, social isolation, and low social support) have been implicated as a cause of premature mortality and increased morbidity. Whether they affect service use is unclear.
Objectives:
To determine whether social relationships are associated with older adults' use of health services, independently of health-related needs.
Search methods:
We searched 8 electronic databases (MEDLINE, Embase, CINAHL, Web of Science, PsycINFO, Scopus, the Cochrane Library, and the Centre for Reviews and Dissemination) for data published between 1983 and 2016. We also identified relevant sources from scanning the reference lists of included studies and review articles, contacting authors to identify additional studies, and searching the tables of contents of key journals.
Selection criteria:
Studies met inclusion criteria if more than 50% of participants were older than 60 years or mean age was older than 60 years; they included a measure of social networks, received social support, or perceived support; and they reported quantitative data on the association between social relationships and older adults' health service utilization.
Data collection and analysis:
Two researchers independently screened studies for inclusion. They extracted data and appraised study quality by using standardized forms. In a narrative synthesis, we grouped the studies according to the outcome of interest (physician visits, hospital admissions, hospital readmissions, emergency department use, hospital length of stay, utilization of home- and community-based services, contact with general health services, and mental health service use) and the domain of social relationships covered (social networks, received social support, or perceived support). For each service type and social relationship domain, we assessed the strength of the evidence across studies according to the quantity and quality of studies and consistency of findings.
Main results:
The literature search retrieved 26 077 citations, 126 of which met inclusion criteria. Data were reported across 226 678 participants from 19 countries. We identified strong evidence of an association between weaker social relationships and increased rates of readmission to hospital (75% of high-quality studies reported evidence of an association in the same direction). In evidence of moderate strength, according to 2 high-quality and 3 medium-quality studies, smaller social networks were associated with longer hospital stays. When we considered received and perceived social support separately, they were not linked to health care use. Overall, the evidence did not indicate that older patients with weaker social relationships place greater demands on ambulatory care (including physician visits and community- or home-based services) than warranted by their needs.
Authors' conclusions:
Current evidence does not support the view that, independently of health status, older patients with lower levels of social support place greater demands on ambulatory care. Future research on social relationships would benefit from a consensus on clinically relevant concepts to measure. Public Health Implications. Our findings are important for public health because they challenge the notion that lonely older adults are a burden on all health and social care services. In high-income countries, interventions aimed at reducing social isolation and loneliness are promoted as a means of preventing inappropriate service use. Our review cautions against assuming that reductions in care utilization can be achieved by intervening to strengthen social relationships. (Am J Public Health. Published online ahead of print February 22, 2018: e1-e10. doi:10.2105/AJPH.2017.304256).
To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services. © 2017 Project HOPE-The People-to-People Health Foundation, Inc.
Purpose of study:
To assess trends in family caregiving between 1999 and 2015.
Design and methods:
We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined.
Results:
Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999.
Implications:
Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.
Considering a network approach to health determinants, we test the hypothesis that benefits of high socioeconomic status (SES) may be transmitted up the generational ladder from offspring to parents. Studies that examine own SES and own health outcomes, or SES of parents and outcomes of young or adolescent children, are common. Those that investigate SES of offspring and their association with parental health are rare. Employing data from a historical population of individuals extracted from a comprehensive population database that links demographic and vital records across generations, this study tests the hypothesis that higher offspring SES associates with lower parental mortality after controlling for parental SES. The sample includes 29,972 individuals born between 1864 and 1883 whose offspring were born between 1886 and 1920. SES is operationalized using Nam-Powers occupational status scores divided into quartiles and a category for farmers. Models assess mortality risk after age 40. Included is a test for whether effects are proportional across parents who died younger and older. Estimated life expectancies across categories of offspring SES conditioned on parental SES are calculated to illustrate specifically how differences in SES relate to differences in years lived. Results indicate a longevity penalty for those whose offspring have low SES and a longevity dividend for those with high-SES offspring. The influence of offspring attributes on well-being of parents points to fluid and myriad linkages between generations.
Background:
Early life socioeconomic status (SES) may play a role in cancer risk in adulthood. However, measuring SES retrospectively presents challenges. Parental occupation on the birth certificate is a novel method of ascertaining early-life SES that has not been applied in cancer epidemiology.
Methods:
For a Baby-Boom cohort born in 1945-1959 in two Utah counties, individual-level Nam-Powers SES (Np-SES) was derived from parental industry/occupation reported on birth certificates. Neighborhood SES was estimated from average household income of census tract at birth. Cancer incidence was determined by linkage to Utah Cancer Registry records through the Utah Population Database. Hazard ratios (HR) for cancer risk by SES quartile were estimated using Cox proportional hazards regression.
Results:
Females with low Np-SES at birth had lower risk of breast cancer compared to those in the highest Np-SES group (HRQ1/Q4=0.83 95% CI: 0.72-0.97; HRQ2/Q4=0.81 95% CI: 0.69-0.96). Np-SES was inversely associated with melanoma (HRQ1/Q4=0.81 95% CI: 0.67-0.98) and prostate cancer (HRQ1/Q4=0.70 95% CI: 0.56-0.88). Women born into lower SES neighborhoods had a significantly increased risk for invasive cervical cancer (HRQ1/Q4=1.44 95% CI: 1.12-1.85; HRQ2/Q4=1.33 95% CI: 1.04-1.72). Neighborhood SES had similar effects for melanoma and prostate cancers, but was not associated with female breast cancer. We found no association with SES for pancreas, lung, and colon and rectal cancers.
Conclusions:
Individual SES derived from parental occupation at birth was associated with altered risk for several cancer sites.
Impact:
This novel methodology can contribute to improved understanding of the role of early-life SES in affecting cancer risk.
A guide to using S environments to perform statistical analyses providing both an introduction to the use of S and a course in modern statistical methods. The emphasis is on presenting practical problems and full analyses of real data sets.
Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the literature related to the development of family caregiver identity. Methods: After a systematic process to locate literature was completed, content analysis was conducted to determine major themes related to the development of caregiving identity. Results: Findings suggest that there are multiple factors related to the development of family caregiver identity, including role engulfment and reversal, loss of shared identity, family obligation and gender norming, extension of the former role, and development of a master identity. Discussion: Considering the role of identity in human behavior, health professionals can address the underutilization of support services by family caregivers of those with chronic disease by understanding the influences on the development of caregiver identity. Translation to Health Education Practice: This literature review will assist health educators in addressing the underutilization of support services by family caregivers of those with chronic disease.
Patient gender plays a significant role in patient-physician communication, patients' understanding of illness, and the aggressiveness of end-of-life (EoL) care. However, little is known about the extent to which gender differences in the effects of EoL discussions on EoL care contribute to gender differences in EoL care. The current study was aimed at determining whether gender differences exist in the receipt of intensive care unit (ICU) care near death and in the association between EoL discussions and the receipt of EoL ICU care.
This was a multisite, prospective cohort study of patients (n = 353) with metastatic cancers who were identified as terminally ill at study enrollment and were interviewed at a median of 4.1 months before their deaths. Postmortem chart reviews and caregiver interviews documented ICU stays in the last week of life.
Patients who received ICU care at the EoL were more likely to be male than those who did not (73% vs 52%, P = .02). After adjustments for potential confounders, male patients reporting an EoL discussion were less likely to have an ICU stay in the last week of life than male patients with no EoL discussion (adjusted odds ratio, 0.26, 95% confidence interval, 0.07-0.91; P = .04). There was no association between EoL discussions and ICU stays near death among female patients.
Men with advanced cancers are more likely than women to receive aggressive, nonbeneficial ICU care near death. Gender differences in the effects of EoL discussions on EoL care likely contribute to and may even explain gender differences in the receipt of ICU care in the last week of life. Cancer 2015. © 2015 American Cancer Society.
© 2015 American Cancer Society.
A burgeoning literature suggests that marriage may have a wide range of benefits, including improvements in individuals' economic well-being and mental and physical health, as well as the well-being of their children. The authors have synthesized recent literature from rigorous research studies across several fields, including public health, the social sciences, and medical science, to provide a broad understanding of the current research on the link between marriage and health.
The ‘sandwich generation’ has been conceptualised as those mid-life adults who simultaneously raise dependent children and care for frail elderly parents. Such a combination of dependants is in fact very unusual, and the more common situation is when adults in late mid-life or early old age have one or more surviving parents and adult but still partly dependent children. It can be hypothesised that for parents in this pivotal position, the demands from adult children and from elderly parents compete, with the result that those who provide help to one are less likely to provide help to the other. An alternative hypothesis, however, is that family solidarity has an important influence but is not universal, so that some pivotal-generation parents engage in intergenerational exchange in both directions, and there is a positive association between helping parents and helping children. To investigate this question, the paper presents an analysis of data from two broadly comparable national surveys, in Great Britain and the United States, on the care provided by women aged 55–69 years to their descendent and ascendent relatives. The results show that around one-third of the women reported providing help to members of both generations, and that around one-fifth provided support to neither. They broadly support the solidarity hypothesis, but provide some evidence that having three or more children is associated with a reduced likelihood of providing help to a parent.
Using a social exchange perspective and data from a national sample of 978 spouse and child caregivers of older family members, this study assessed the association between caregiver relationship and gender and the costs and rewards of caregiving. We also evaluated whether relationship and gender moderate the effects of helpfulness on caregiver costs and rewards. Results supported the hypotheses that women, whether wives or daughters, experience more caregiving costs than do men, and that adult children experience more rewards than do spousal caregivers. In addition, care recipient helpfulness was associated with greater increases in rewards for spousal caregivers than for adult children caregivers.
To determine to what extent current practice promotes the goals of individuals who did not designate a surrogate while competent with respect to decision-making during periods of decisional incapacity.
Systematic literature search for studies published in English and listed in PubMed, Scopus, Embase, CINAHL, or PsycINFO. Studies were eligible if they provided quantitative or qualitative empirical data on how adults want treatment decisions to be made for them during periods of incapacity.
Primarily United States, with six other countries.
Fourteen qualitative articles, representing 11 distinct data sets, and 26 quantitative articles, representing 25 distinct data sets, providing data on the views of 22,828 individuals, met the inclusion criteria. Most of the respondents were elderly or seriously ill.
Quantitative surveys and qualitative interview studies assessing individuals' goals.
The majority wanted close family members to act as their surrogate. The most common reason for preferring family members was the belief that they know which treatments the patient would want. Individuals also wanted to reduce the burden on their families. There was significant variation in the extent to which respondents wanted their surrogates to have leeway when making treatment decisions.
Individuals have three primary goals with respect to making treatment decisions for them during periods of incapacity: involve their family, treat them consistently with their own treatment preferences, and reduce the burden on their family. Unfortunately, prior systematic reviews have found that family members often are not able to determine which treatment patients want, and family members frequently experience substantial distress when acting as surrogates. These findings suggest that current practice frequently fails to promote individuals' primary goals for treatment decision-making. Future research should evaluate ways to better promote individuals' goals. In the meantime, clinicians should be aware of these findings and should encourage patients to document their own goals, including their treatment preferences and their preferences regarding how they want decisions to be made for them during periods of decisional incapacity.
Data Analysis Using Regression and Multilevel/Hierarchical Models, first published in 2007, is a comprehensive manual for the applied researcher who wants to perform data analysis using linear and nonlinear regression and multilevel models. The book introduces a wide variety of models, whilst at the same time instructing the reader in how to fit these models using available software packages. The book illustrates the concepts by working through scores of real data examples that have arisen from the authors' own applied research, with programming codes provided for each one. Topics covered include causal inference, including regression, poststratification, matching, regression discontinuity, and instrumental variables, as well as multilevel logistic regression and missing-data imputation. Practical tips regarding building, fitting, and understanding are provided throughout.
This paper considers the impact of the distance between employed caregivers and their elderly relatives on the provision of various forms of family-based assistance ("eldercare"), and in so doing it contributes to two overlapping literatures, one on the geography of care for elderly persons and the other on eldercare as a "work and family" issue. The paper also seeks to interpret and understand the spatiality of eldercare in light of evolving public policy on the care of dependent populations, and does so with an eye to the highly gendered nature of family caregiving. The empirical portion of the paper draws on a national survey of work and family conducted by CARNET (The Canadian Aging Research Network). Analysis of data for 1149 respondents with eldercare responsibilities reveals significant distance-decay effects in the average (weekly) number of hours devoted to eldercare. However, disaggregation by gender reveals that only male caregivers display this normative behaviour. Analysis of the average time-distances at which particular types of assistance are provided reveals a similar "gender gap"--women are willing to travel farther, more often, than male caregivers. The results suggest that the reconceptualization of aging as a "private" problem, to be attended to (by women) in the family and community, will particularly affect the careers and family lives of female caregivers, for they are more likely than their male counterparts to take on more travel and try to squeeze more into already tight time budgets.
In 2004, there were approximately 44 million men and women in the United States who were providing unpaid care to a family member, friend, or neighbor; these caregivers represented an estimated 22.9 million households (21% of all U.S. households). The 1-year economic value of this unpaid labor force was recently estimated to be 306 billion dollars. Caregiving is an important issue for women, as they represent 61% of those providing care and 65% of those receiving care. Women caregivers tend to fare worse than men, reporting higher levels of symptoms tied to depression and anxiety and lower levels of subjective well-being, life satisfaction, and physical health. In addition, the care that women provide is not without cost to them in terms of their financial future. Still, despite the burden, most caregivers consider providing care to family and friends a rewarding experience.
The shaping of America: A geographical perspective on 500 years of history
- D W Meinig
Stargazer: Well-Formatted Regression and Summary Statistics Tables (5.2.2)
- M Hlavec
The socioeconomic approach to status measurement: with a guide to occupational and socioeconomic status scores
- C Nam
- M Powers
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Where do Americans die?
- Palliative Care
Psych: Procedures for Personality and Psychological Research (2.1.9). Northwestern University
- W Revelle
The final year: Visualizing end of life
- N Strepo
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