Family Caregiving and Place of Death: Insights From Cross-national Analysis of the Harmonized End-of-Life Data.
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ABSTRACT: Objectives
Family is largely overlooked in research on factors associated with place of death among older adults. We determine if family caregiving at the end of life is associated with place of death in the United States and Europe.Method
We use the Harmonized End of Life data sets developed by the Gateway to Global Aging Data for the Survey of Health, Ageing and Retirement in Europe (SHARE) and the Health and Retirement Study (HRS). We conducted multinomial logistic regression on 7,113 decedents from 18 European countries and 3,031 decedents from the United States to determine if family caregiving, defined based on assistance with activities of daily living, was associated with death at home versus at a hospital or nursing home.Results
Family caregiving was associated with reduced odds of dying in a hospital and nursing home, relative to dying at home in both the United States and Europe. Care from a spouse/partner or child/grandchild was both more common and more strongly associated with place of death than care from other relatives. Associations between family caregiving and place of death were generally consistent across European welfare regimes.Discussion
This cross-national examination of family caregiving indicates that family-based support is universally important in determining where older adults die. In both the United States and in Europe, most care provided during a long-term illness or disability is provided by family caregivers, and it is clear families exert tremendous influence on place of death.
SUBMITTER: Ailshire J
PROVIDER: S-EPMC8355452 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Background/objectivesHospice care confers well-documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end-of-life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types.DesignProspective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data.SettingContiguous United States.ParticipantsA total of 1,868 NHATS decedents.MeasurementsOutcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self-reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics.ResultsAt the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0-4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life.ConclusionOlder adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness. J Am Geriatr Soc 68:2288-2296, 2020.
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Project description:BackgroundSocioeconomic inequality in access to and use of health services and social care provided near the end of life, or end-of-life care (EOLC), is not well understood in many countries. We examined wealth inequality in EOLC-hospital, nursing home, and hospice use and receipt of formal and informal caregiving-in 22 countries in Europe, Asia (South Korea), and North America (United States, Mexico).MethodsWe used harmonized data from nationally representative studies of people aged 50 and older that collected information on healthcare utilisation and caregiving receipt in the time preceding death. We categorized countries according to their level of public long-term care (LTC) spending and examined EOLC prevalence across countries. We used logistic regression models to estimate wealth inequality in each type of EOLC.FindingsIn the USA the least wealthy had more hospital (OR 1.30, p = 0.008) and nursing home/care use (OR 1.88, p < 0.001). In South Korea the least wealthy had more nursing home/care use (OR 2.24, p = 0.003). The least wealthy in high LTC Europe had less hospice use (OR 0.56, p = 0.003). The least wealthy were also less likely to be hospitalized in European countries with low LTC spending (OR 0.81, p = 0.04), but more likely to receive informal caregiving (OR 1.25, p = 0.033). Formal care was more common among the least wealthy in high LTC Europe (OR 1.57, p = 0.002), the USA (OR 1.42, p < 0.001) and South Korea (OR 1.69, p = 0.028), but less common among the least wealthy in Mexico (OR 0.17, p < 0.001).InterpretationWealth inequality in EOLC exists across countries and reflects differences in the organization, financing, and delivery of care in different countries. The findings highlight the need to consider equity in current and future plans to improve EOLC access.FundingUnited States National Institute on Aging Grant R01AG030153.
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Project description: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.
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Project description:BACKGROUND:End-of-life caregiving frequently is managed by friends and family. Studies on hastened death, including aid in dying or assisted suicide, indicate friends and family also play essential roles before, during, and after death. No studies have compared the experiences of caregivers in hastened and non-hastened death. The study aim is to compare end-of-life and hastened death caregiving experience using Hudson's modified stress-coping model for palliative caregiving. METHOD:Narrative synthesis of qualitative studies for caregivers at end of life and in hastened death, with 9946 end-of life and 1414 hastened death qualitative, peer-reviewed research articles extracted from MEDLINE, CINAHL, Web of Science, and PsycINFO, published between January 1998 and April 2020. RESULTS:Forty-two end-of-life caregiving and 12 hastened death caregiving articles met inclusion criteria. In both end-of-life and hastened death contexts, caregivers are motivated to ease patient suffering and may put their own needs or feelings aside to focus on that priority. Hastened death caregivers' expectation of impending death and the short duration of caregiving may result in less caregiver burden. Acceptance of the patient's condition, social support, and support from healthcare professionals all appear to improve caregiver experience. However, data on hastened death are limited. CONCLUSION:Caregivers in both groups sought closeness with the patient and reported satisfaction at having done their best to care for the patient in a critical time. Awareness of anticipated death and support from healthcare professionals appear to reduce caregiver stress. The modified stress-coping framework is an effective lens for interpreting caregivers' experiences at end of life and in the context of hastened death.
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Project description:BackgroundThe rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life.MethodsA cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009-31 December 2010). Sudden deaths were excluded.ResultsWe studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs.ConclusionIn all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.
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Project description:ObjectiveTo examine differences in end-of-life decision-making in patients dying at home, in a hospital or in a care home.DesignA death certificate study: certifying physicians from representative samples of death certificates, taken between June 2001 and February 2002, were sent questionnaires on the end-of-life decision-making preceding the patient's death.SettingFour European countries: Belgium (Flanders), Denmark, Sweden, and Switzerland (German-speaking part).Main outcome measuresThe incidence of and communication in different end-of-life decisions: physician-assisted death, alleviation of pain/symptoms with a possible life-shortening effect, and non-treatment decisions.ResultsResponse rates ranged from 59% in Belgium to 69% in Switzerland. The total number of deaths studied was 12 492. Among all non-sudden deaths the incidence of several end-of-life decisions varied by place of death. Physician-assisted death occurred relatively more often at home (0.3-5.1%); non-treatment decisions generally occurred more often in hospitals (22.4-41.3%), although they were also frequently taken in care homes in Belgium (26.0%) and Switzerland (43.1%). Continuous deep sedation, in particular without the administration of food and fluids, was more likely to occur in hospitals. At home, end-of-life decisions were usually more often discussed with patients. The incidence of discussion with other caregivers was generally relatively low at home compared with in hospitals or care homes.ConclusionThe results suggest the possibility that end-of-life decision-making is related to the care setting where people die. The study results seem to call for the development of good end-of-life care options and end-of-life communication guidelines in all settings.
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Project description:BackgroundLong-term and end-of-life (EOL) care for older adults has become a global concern due to extended longevity, which is generally accompanied by increased rates of disability. However, differences in the rates of disability in activities of daily living (ADLs), place of death and medical expenditures during the last year of life between centenarians and non-centenarians in China remain unknown. This study aims to fill this research gap to inform policy efforts for the capacity-building of long-term and EOL care for the oldest-old, especially for centenarians in China.MethodsData from 20,228 decedents were derived from the 1998-2018 Chinese Longitudinal Healthy Longevity Survey. Weighted logistic and Tobit regression models were used to estimate differences in the prevalence of functional disability, rate of death in hospitals and EOL medical expenditures by age groups among oldest-old individuals.ResultsOf the 20,228 samples, 12,537 oldest-old individuals were female (weighted, 58.6%, hereafter); 3,767 were octogenarians, 8,260 were nonagenarians, and 8,201 were centenarians. After controlling for other covariates, nonagenarians and centenarians experienced a greater prevalence of full dependence (average marginal differences [95% CI]: 2.7% [0%, 5.3%]; 3.8% [0.3%, 7.9%]) and partial dependence (6.9% [3.4%, 10.3%]; 15.1% [10.5%, 19.8%]) but a smaller prevalence of partial independence (-8.9% [-11.6%, -6.2%]; -16.0% [-19.1%, -12.8%]) in ADLs than octogenarians. Nonagenarians and centenarians were less likely to die in hospitals (-3.0% [-4.7%, -1.2%]; -4.3% [-6.3%, -2.2%]). Additionally, nonagenarians and centenarians reported more medical expenditures during the last year of life than octogenarians with no statistically significant differences.ConclusionThe oldest-old experienced an increased prevalence of full and partial dependence in ADLs with increasing age and reported a decline in the prevalence of full independence. Compared with octogenarians, nonagenarians and centenarians were less likely to die in hospitals. Therefore, future policy efforts are warranted to optimise the service provision of long-term and EOL care by age patterns for the oldest-old population in China.
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Project description:BackgroundLittle is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap.MethodsIndividual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients' place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients' socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs).ResultsWe found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose-response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49-0.80; Model 2: APR range 0.79-0.98) and urban areas (Model 1: APR range 0.50-0.83; Model 2: APR range 0.98-0.99) were less likely to die there, compared to those who lived closer (i.e. ≤ 10 min drive time). The effects were larger in rural areas compared to urban areas.ConclusionGeographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.
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Project description:ObjectivesTo determine whether the receipt of chemotherapy among terminally ill cancer patients months before death was associated with patients' subsequent intensive medical care and place of death.DesignSecondary analysis of a prospective, multi-institution, longitudinal study of patients with advanced cancer.SettingEight outpatient oncology clinics in the United States.Participants386 adult patients with metastatic cancers refractory to at least one chemotherapy regimen, whom physicians identified as terminally ill at study enrollment and who subsequently died.Main outcome measuresPrimary outcomesintensive medical care (cardiopulmonary resuscitation, mechanical ventilation, or both) in the last week of life and patients' place of death (for example, intensive care unit).Secondary outcomessurvival, late hospice referrals (≤ 1 week before death), and dying in preferred place of death.Results216 (56%) of 386 terminally ill cancer patients were receiving palliative chemotherapy at study enrollment, a median of 4.0 months before death. After propensity score weighted adjustment, use of chemotherapy at enrollment was associated with higher rates of cardiopulmonary resuscitation, mechanical ventilation, or both in the last week of life (14% v 2%; adjusted risk difference 10.5%, 95% confidence interval 5.0% to 15.5%) and late hospice referrals (54% v 37%; 13.6%, 3.6% to 23.6%) but no difference in survival (hazard ratio 1.11, 95% confidence interval 0.90 to 1.38). Patients receiving palliative chemotherapy were more likely to die in an intensive care unit (11% v 2%; adjusted risk difference 6.1%, 1.1% to 11.1%) and less likely to die at home (47% v 66%; -10.8%, -1.0% to -20.6%), compared with those who were not. Patients receiving palliative chemotherapy were also less likely to die in their preferred place, compared with those who were not (65% v 80%; adjusted risk difference -9.4%, -0.8% to -18.1%).ConclusionsThe use of chemotherapy in terminally ill cancer patients in the last months of life was associated with an increased risk of undergoing cardiopulmonary resuscitation, mechanical ventilation or both and of dying in an intensive care unit. Future research should determine the mechanisms by which palliative chemotherapy affects end of life outcomes and patients' attainment of their goals.
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Project description: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.The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender.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 ?(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).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.Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life.
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