Nursing home and end-of-life care in Parkinson disease.
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ABSTRACT: Objective
To examine long-term care facility (LTCF or nursing home) use and end-of-life care for individuals with Parkinson disease (PD).Methods
In this nationwide retrospective cohort study, we compared LTCF and hospice utilization among Medicare beneficiaries diagnosed with PD by demographic, clinical, and physician characteristics. We also examined the impact of outpatient neurologist care for institutionalized patients with PD on end-of-life care.Results
We identified 469,055 individuals with PD who received Medicare benefits in 2002. Nearly 25% (more than 100,000 in total) resided in an LTCF. Women with PD had greater odds of nursing facility residence (adjusted odds ratio [AOR] 1.34, 95% confidence interval [CI] 1.30-1.38) compared with men. Black individuals with PD were 34% more likely than white individuals to reside in an LTCF (AOR 1.34, 95% CI 1.30-1.38), contrary to the race patterns typically observed for LTCF use. Hip fracture (AOR 2.10, 95% CI 2.04-2.15) and dementia (AOR 4.06, 95% CI 4.00-4.12) were the strongest clinical predictors of LTCF placement. Only 33% (n = 38,334) of nursing home residents with PD had outpatient neurologist care. Eighty-four percent (n = 80,877) of LTCF residents with PD died by December 31, 2005. Hospice utilization varied little by race and sex. LTCF residents who had outpatient neurologist care were twice as likely to utilize hospice services before death (AOR 2.35, 95% CI 2.24-2.47).Conclusions and relevance
A large proportion of the Medicare PD population resides in an LTCF. There is substantial unmet need for palliative care in the PD population. Increased efforts to provide specialist care to dependent individuals with PD may improve end-of-life care.
SUBMITTER: Safarpour D
PROVIDER: S-EPMC4534080 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany. METHODS:A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested. RESULTS:486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement. CONCLUSIONS:Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.
| S-EPMC6942381 | biostudies-literature
Project description:ObjectiveHealth disparities are pervasive in nursing homes (NHs), but disparities in NH end-of-life (EOL) care (ie, hospital transfers, place of death, hospice use, palliative care, advance care planning) have not been comprehensively synthesized. We aim to identify differences in NH EOL care for racial/ethnic minority residents.DesignA systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and registered in PROSPERO (CRD42020181792).Setting and participantsOlder NH residents who were terminally ill or approaching the EOL, including racial/ethnic minority NH residents.MethodsThree electronic databases were searched from 2010 to May 2020. Quality was assessed using the Newcastle-Ottawa Scale.ResultsEighteen articles were included, most (n = 16) were good quality and most (n = 15) used data through 2010. Studies varied in definitions and grouping of racial/ethnic minority residents. Four outcomes were identified: advance care planning (n = 10), hospice (n = 8), EOL hospitalizations (n = 6), and pain management (n = 1). Differences in EOL care were most apparent among NHs with higher proportions of Black residents. Racial/ethnic minority residents were less likely to complete advance directives. Although hospice use was mixed, Black residents were consistently less likely to use hospice before death. Hispanic and Black residents were more likely to experience an EOL hospitalization compared with non-Hispanic White residents. Racial/ethnic minority residents experienced worse pain and symptom management at the EOL; however, no articles studied specifics of palliative care (eg, spiritual care).Conclusions and implicationsThis review identified NH health disparities in advance care planning, EOL hospitalizations, and pain management for racial/ethnic minority residents. Research is needed that uses recent data, reflective of current NH demographic trends. To help reduce EOL disparities, language services and cultural competency training for staff should be available in NHs with higher proportions of racial/ethnic minorities.
| S-EPMC8128037 | biostudies-literature
Project description:Background and objectivesLittle is known about the relation between the content of advance directives and downstream treatment decisions among patients receiving maintenance dialysis. In this study, we determined the prevalence of advance directives specifying treatment limitations and/or surrogate decision-makers in the last year of life and their association with end-of-life care among nursing home residents.Design, setting, participants, & measurementsUsing national data from 2006 to 2007, we compared the content of advance directives among 30,716 nursing home residents receiving dialysis to 30,825 nursing home residents with other serious illnesses during the year before death. Among patients receiving dialysis, we linked the content of advance directives to Medicare claims to ascertain site of death and treatment intensity in the last month of life.ResultsIn the last year of life, 36% of nursing home residents receiving dialysis had a treatment-limiting directive, 22% had a surrogate decision-maker, and 13% had both in adjusted analyses. These estimates were 13%-27%, 5%-11%, and 6%-13% lower, respectively, than for decedents with other serious illnesses. For patients receiving dialysis who had both a treatment-limiting directive and surrogate decision-maker, the adjusted frequency of hospitalization, intensive care unit admission, intensive procedures, and inpatient death were lower by 13%, 17%, 13%, and 14%, respectively, and hospice use and dialysis discontinuation were 5% and 7% higher compared with patients receiving dialysis lacking both components.ConclusionsAmong nursing home residents receiving dialysis, treatment-limiting directives and surrogates were associated with fewer intensive interventions and inpatient deaths, but were in place much less often than for nursing home residents with other serious illnesses.
| S-EPMC5338713 | biostudies-literature
Project description:BackgroundThe policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fourth update of the original review.ObjectivesTo determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs, and caregivers, compared with inpatient hospital or hospice care.Search methodsWe searched the following databases until April 2015: Cochrane Central Register of Controlled Trials (CENTRAL) (the Cochrane Library), Ovid MEDLINE(R) (from 1950), EMBASE (from 1980), CINAHL (from 1982), and EconLit (from 1969). We checked the reference lists of potentially relevant articles identified and handsearched palliative care publications, clinical trials registries, and a database of systematic reviews for related trials (PDQ-Evidence 2015).Selection criteriaRandomised controlled trials, interrupted time series, or controlled before and after studies evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older.Data collection and analysisTwo review authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible, we reported the results from individual studies.Main resultsWe included four trials in this review and did not identify new studies from the search in April 2015. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (risk ratio (RR) 1.33, 95% confidence interval (CI) 1.14 to 1.55, P = 0.0002; Chi(2) = 1.72, df = 2, P = 0.42, I(2) = 0%; 3 trials; N = 652; high quality evidence). Admission to hospital while receiving home-based end-of-life care varied between trials, and this was reflected by a high level of statistical heterogeneity in this analysis (range RR 0.62 to RR 2.61; 4 trials; N = 823; moderate quality evidence). Home-based end-of-life care may slightly improve patient satisfaction at one-month follow-up and reduce it at six-month follow-up (2 trials; low quality evidence). The effect on caregivers is uncertain (2 trials; low quality evidence). The intervention may slightly reduce healthcare costs (2 trials, low quality evidence). No trial reported costs to patients and caregivers.Authors' conclusionsThe evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home, although the numbers of people admitted to hospital while receiving end-of-life care should be monitored. Future research should systematically assess the impact of home-based end-of-life care on caregivers.
| S-EPMC7111432 | biostudies-literature
Project description:Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting?This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.
| S-EPMC4177958 | biostudies-literature
Project description:ObjectiveUltrahigh therapy use has increased in SNFs without concomitant increases in residents' characteristics. It has been suggested that this trend may also have influenced the provision of high-intensity rehabilitation therapies to residents who are at the end of life (EOL). Motivated by lack of evidence, we examined therapy use and intensity among long-stay EOL residents.DesignAn observational study covering a time period 2012-2016.Setting and participantsNew York State nursing homes (N = 647) and their long-stay decedent residents (N = 55,691).MethodsData sources included Minimum Data Set assessments, vital statistics, Nursing Home Compare website, LTCfocus, and Area Health Resource File. Therapy intensity in the last month of life was the outcome measure. Individual-level covariates were used to adjust for health conditions. Facility-level covariates were the key independent variables of interest. Multinomial logistic regression models with facility random effects were estimated.ResultsOverall, 13.6% (n = 7600) of long-stay decedent residents had some therapy in the last month of life, 0% to 45% across facilities. Of those, almost 16% had very high/ultrahigh therapy intensity (>500 minutes) prior to death. Adjusting for individual-level covariates, decedents in the for-profit facilities had 18% higher risk of low/medium therapy [relative risk ratio (RRR) = 1.182, P < .001], and more than double the risk of high/ultrahigh therapy (RRR = 2.126, P < .001), compared to those with no therapy use in the last month of life. In facilities with higher physical therapy staffing, decedents had higher risk (RRR = 16.180, P = .002) of high/ultrahigh therapy, but not of low/medium therapy intensity. The use of high/ultrahigh therapy in this population has increased over time.Conclusions and relevanceThis is a first study to empirically demonstrate that facility characteristics are associated with the provision of therapy intensity to EOL residents. Findings suggest that facilities with a for-profit mission, and with higher staffing of therapists, may be more incentivized to maximize therapy use, even among the sickest of the residents.
| S-EPMC8491277 | biostudies-literature
Project description:BackgroundHealth care transitions in the last months of life can be burdensome and potentially of limited clinical benefit for patients with advanced cognitive and functional impairment.MethodsTo examine health care transitions among Medicare decedents with advanced cognitive and functional impairment who were nursing home residents 120 days before death, we linked nationwide data from the Medicare Minimum Data Set and claims files from 2000 through 2007. We defined patterns of transition as burdensome if they occurred in the last 3 days of life, if there was a lack of continuity in nursing homes after hospitalization in the last 90 days of life, or if there were multiple hospitalizations in the last 90 days of life. We also considered various factors explaining variation in these rates of burdensome transition. We examined whether there was an association between regional rates of burdensome transition and the likelihood of feeding-tube insertion, hospitalization in an intensive care unit (ICU) in the last month of life, the presence of a stage IV decubitus ulcer, and hospice enrollment in the last 3 days of life.ResultsAmong 474,829 nursing home decedents, 19.0% had at least one burdensome transition (range, 2.1% in Alaska to 37.5% in Louisiana). In adjusted analyses, blacks, Hispanics, and those without an advance directive were at increased risk. Nursing home residents in regions in the highest quintile of burdensome transitions (as compared with those in the lowest quintile) were significantly more likely to have a feeding tube (adjusted risk ratio, 3.38), have spent time in an ICU in the last month of life (adjusted risk ratio, 2.10), have a stage IV decubitus ulcer (adjusted risk ratio, 2.28), or have had a late enrollment in hospice (adjusted risk ratio, 1.17).ConclusionsBurdensome transitions are common, vary according to state, and are associated with markers of poor quality in end-of-life care.
| S-EPMC3236369 | biostudies-literature
Project description:Prevalence of multidrug resistant organisms (MDRO) in nursing homes in Ireland and the Netherlands
| PRJEB31196 | ENA
Project description:ObjectiveTo determine the relationship between an advance care planning (ACP) video intervention, Pragmatic Trial of Video Education in Nursing Homes (PROVEN), and end-of-life health care transitions among long-stay nursing home residents with advanced illness.DesignPragmatic cluster randomized clinical trial. Five ACP videos were available on tablets or online at intervention facilities. PROVEN champions employed by nursing homes (usually social workers) were directed to offer residents (or their proxies) ≥1 video under certain circumstances. Control facilities employed usual ACP practices.Setting and participantsPROVEN occurred from February 2016 to May 2019 in 360 nursing homes (119 intervention, 241 control) owned by 2 health care systems. This post hoc study of PROVEN data analyzed long-stay residents ≥65 years who died during the trial who had either advanced dementia or cardiopulmonary disease (advanced illness). We required an observation time ≥90 days before death. The analytic sample included 923 and 1925 advanced illness decedents in intervention and control arms; respectively.MethodsOutcomes included the proportion of residents with 1 or more hospital transfer (ie, hospitalization, emergency department use, or observation stay), multiple (≥3) hospital transfers during the last 90 days of life, and late transitions (ie, hospital transfer during the last 3 days or hospice admission on the last day of life).ResultsHospital transfers in the last 90 days of life among decedents with advanced illness were significantly lower in the intervention vs control arm (proportion difference = -1.7%, 95% CI -3.2%, -0.1%). The proportion of decedents with multiple hospital transfers and late transitions did not differ between the trial arms.Conclusions and implicationsVideo-assisted ACP was modestly associated with reduced hospital transfers in the last 90 days of life among nursing home residents with advanced illness. The intervention was not significantly associated with late health care transitions and multiple hospital transfers.
| S-EPMC8885779 | biostudies-literature
Project description:BackgroundEnd-of-life hospitalizations in nursing home residents are common, although they are often burdensome and potentially avoidable.AimWe aimed to summarize the existing evidence on end-of-life hospitalizations in nursing home residents.DesignSystematic review (PROSPERO registration number CRD42017072276).Data sourcesA systematic literature search was carried out in PubMed, CINAHL, and Scopus (date of search 9 April 2019). Studies were included if they reported proportions of in-hospital deaths or hospitalizations of nursing home residents in the last month of life. Two authors independently selected studies, extracted data, and assessed the quality of studies. Median with interquartile range was used to summarize proportions.ResultsA total of 35 studies were identified, more than half of which were from the United States (n?=?18). While 29 studies reported in-hospital deaths, 12 studies examined hospitalizations during the last month of life. The proportion of in-hospital deaths varied markedly between 5.9% and 77.1%, with an overall median of 22.6% (interquartile range: 16.3%-29.5%). The proportion of residents being hospitalized during the last month of life ranged from 25.5% to 69.7%, and the median was 33.2% (interquartile range: 30.8%-38.4%). Most studies investigating the influence of age found that younger age was associated with a higher likelihood of end-of-life hospitalization. Four studies assessed trends over time, showing heterogeneous findings.ConclusionThere is a wide variation in end-of-life hospitalizations, even between studies from the same country. Overall, such hospitalizations are common among nursing home residents, which indicates that interventions tailored to each specific health care system are needed to improve end-of-life care.
| S-EPMC6899437 | biostudies-literature