Characteristics and End-of-Life Care Pathways of Decedents From a National Cohort of Assisted Living Residents.

BACKGROUND: Assisted living (AL) is an increasingly common, place of care for dying persons. However, it remains unclear to what extent residents are able to age in place or if AL represents an additional transition before death. OBJECTIVES: Examine the sociodemographic characteristics, comorbidities, health care utilization, and end-of-life care pathways of AL residents before death. RESEARCH DESIGN: A national cohort study of fee-for-service Medicare beneficiaries residing in large AL communities (25+ beds) during the month of January 2017 with 3 years of follow-up, using administrative claims data. SUBJECTS: 268,812 AL residents. MEASURES: Sociodemographic characteristics, comorbidities, and health care utilization at the end of life. RESULTS: Between 2017 and 2019, 35.1% of the study cohort died. Decedents were more likely than the overall AL population to be 85 years old or older (76.5% vs. 59.5%), and diagnosed with Alzheimer's disease and related dementia (70.3% vs. 51.6%). Most decedents (96.2%) had some presence in AL during the last year of life, but over 1 in 5 left AL before the last month of life. Among those in AL on day 30 before death, nearly half (46.4%) died in place without any health care transition, while 13.2% had 3 or more transfers before dying. CONCLUSIONS: AL is an important place of care for dying persons, especially for those with dementia. These findings indicate a need to assess existing policies and processes guiding the care of the frail and vulnerable population of dying AL residents.

Bereaved Respondent Perceptions of Quality of Care by Inpatient Palliative Care Utilization in the Last Month of Life.

BACKGROUND: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. OBJECTIVE: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. DESIGN: Retrospective cohort study using the National Health Aging Trends Study waves 3-11. SUBJECTS: US decedents age 65 and older with family member or close friend survey response. MAIN MEASURES: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. KEY RESULTS: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (-13.7%, -37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (- 4.9%, -29.0%)). CONCLUSION: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower.

A Comparison of Palliative Care Delivery between Ethnically Chinese and Non-Chinese Canadians in the Last Year of Life.

BACKGROUND: Ethnically Chinese adults in Canada and the United States face multiple barriers in accessing equitable, culturally respectful care at the end-of-life. Palliative care (PC) is committed to supporting patients and families in achieving goal-concordant, high-quality serious illness care. Yet, current PC delivery may be culturally misaligned. Therefore, understanding ethnically Chinese patients' use of palliative care may uncover modifiable factors to sustained inequities at the end-of-life. OBJECTIVE: To compare the use and delivery of PC in the last year of life between ethnically Chinese and non-Chinese adults. DESIGN: Population-based cohort study. PARTICIPANTS: All Ontario adults who died between January 1st, 2012, and October 31st, 2022, in Ontario, Canada. EXPOSURES: Chinese ethnicity. MAIN MEASURES: Elements of physician-delivered PC, including model of care (generalist; specialist; mixed), timing and location of initiation, and type of palliative care physician at initial consultation. KEY RESULTS: The final study cohort included 527,700 non-Chinese (50.8% female, 77.9 ± 13.0 mean age, 13.0% rural residence) and 13,587 ethnically Chinese (50.8% female, 79.2 ± 13.6 mean age, 0.6% rural residence) adults. Chinese ethnicity was associated with higher likelihoods of using specialist (adjusted odds ratio [aOR] 1.53, 95%CI 1.46-1.60) and mixed (aOR 1.32, 95%CI 1.26-1.38) over generalist models of PC, compared to non-Chinese patients. Chinese ethnicity was also associated with a higher likelihood of PC initiation in the last 30 days of life (aOR 1.07, 95%CI 1.03-1.11), in the hospital setting (aOR 1.24, 95%CI 1.18-1.30), and by specialist PC physicians (aOR 1.33, 95%CI 1.28-1.38). CONCLUSIONS: Chinese ethnicity was associated with a higher likelihood of mixed and specialist models of PC delivery in the last year of life compared to adults who were non-Chinese. These observed differences may be due to later initiation of PC in hospital settings, and potential differences in unmeasured needs that suggest opportunities to initiate early, community-based PC to support ethnically Chinese patients with serious illness.

The potential impact of proxy reports for symptom experience and care quality and experience in advanced cancer.

OBJECTIVES: As the US tests models of care for the seriously ill, patient perceptions of the quality of care are important. Proxies are often needed for this group. We sought to understand the potential impact of proxy reports for the assessment of care quality and experience in cancer. METHODS: Secondary data analysis of a deidentified prospective study that included surveys of perceived care quality, including symptom management, from patients with advanced cancer receiving chemotherapy and their caregivers. Surveys were administered at diagnosis (time 1) and treatment (time 2), with top-box scoring used for analysis. Overall concordance was assessed using metrics including Gwet's AC1. The proportion of the highest scores by respondent type within 2 subgroups were examined: (1) symptom burden and (2) practice setting. RESULTS: Data from 83 dyads were analyzed. Proxies and patients frequently reported the highest scores for quality (time 1: proxies: 77% and patients: 80%). At time 1, 14% of proxies and 10% of patients reported an unmet need for symptom palliation. Most patients reporting an unmet need gave the top score for quality (75%), but fewer proxies did so (45%). Proxy and patient reports were similar within practice settings. Concordance was at least moderate (nearly all outcomes >0.5 and some >0.8) by Gwet's AC1. SIGNIFICANCE OF RESULTS: Findings of at least moderate concordance and similar experience outcomes within subgroups suggest the use of proxies may not change estimates substantially. However, consideration should be taken when evaluating symptom management, particularly if such evaluations inform assessment of provider performance.

Asian American Medicare Beneficiaries Disproportionately Receive Invasive Mechanical Ventilation When Hospitalized at the End-of-Life.

BACKGROUND: Asian Americans are the fastest-growing ethnic minority in the USA, but we know little about the end-of-life care for this population. OBJECTIVE: Compare invasive mechanical ventilation (IMV) use between older Asian and White decedents with hospitalization in the last 30 days of life. DESIGN: Population-based retrospective cohort study. PARTICIPANTS: A 20% random sample of 2000-2017 Medicare fee-for-service decedents who were 66 years or older and had a hospitalization in the last 30 days of life. EXPOSURE: White and Asian ethnicity as collected by the Social Security Administration. MAIN MEASURES: We identified IMV using validated procedural codes. We compared IMV use between Asian and White fee-for-service decedents using random-effects logistic regression analysis, adjusting for sociodemographics, admitting diagnosis, comorbidities, and secular trends. KEY RESULTS: From 2000 to 2017, we identified 2.1 million White (54.5% female, 82.4±8.1 mean age) and 28,328 Asian (50.8% female, 82.6±8.1 mean age) Medicare fee-for-service decedents hospitalized in the last 30 days. Compared to White decedents, Asian fee-for-service decedents have an increased adjusted odds ratio (AOR) of 1.42 (95%CI: 1.38-1.47) for IMV. In sub-analyses, Asians' AOR for IMV differed by admitting diagnoses (cancer AOR=1.32, 95%CI: 1.15-1.51; congestive heart failure AOR=1.75, 95%CI: 1.47-2.08; dementia AOR=1.93, 95%CI: 1.70-2.20; and chronic obstructive pulmonary disease AOR=2.25, 95%CI: 1.76-2.89). CONCLUSIONS: Compared to White decedents, Asian Medicare decedents are more likely to receive IMV when hospitalized at the end-of-life, especially among patients with non-cancer admitting diagnoses. Future research to better understand the reasons for these differences and perceived quality of end-of-life care among Asian Americans is urgently needed.

Hospice Care Experiences Among Cancer Patients and Their Caregivers.

BACKGROUND: Little is known about the current quality of care for hospice cancer patients and how it varies across hospice programs in the USA. OBJECTIVE: To examine hospice care experiences among decedents with a primary cancer diagnosis and their family caregivers, comparing quality across settings of hospice care. DESIGN: We analyzed data from the Consumer Assessment of Healthcare Providers and Systems Hospice Survey (32% response rate). Top-box outcomes (0-100) were calculated overall and by care setting, adjusting for survey mode and patient case mix. PARTICIPANTS: Two hundred seventeen thousand five hundred ninety-six caregiver respondents whose family member had a primary cancer diagnosis and died in 2017 or 2018 while receiving hospice care from 2,890 hospices nationwide. MAIN MEASURES: Outcomes (0-100 scale) included 8 National Quality Forum-endorsed quality measures, as well as responses to 4 survey questions assessing whether needs were met for specific symptoms (pain, dyspnea, constipation, anxiety/sadness). KEY RESULTS: Quality measure scores ranged from 74.9 (Getting Hospice Care Training measure) to 89.5 (Treating Family Member with Respect measure). The overall score for Getting Help for Symptoms was 75.1 with item scores within this measure ranging from 60.6 (getting needed help for feelings of anxiety or sadness) to 84.5 (getting needed help for pain). Measure scores varied significantly across settings and differences were large in magnitude, with caregivers of decedents who received care in a nursing home (NH) or assisted living facility (ALF) setting consistently reporting poorer quality of care. CONCLUSIONS: Important opportunities exist to improve hospice care for symptom palliation and providing training for caregivers when their family members are at home or in an ALF setting. Efforts to improve care for cancer patients in the NH and ALF setting are especially needed.

Lost in Transition: a Qualitative Study of Patients Discharged from Hospital to Skilled Nursing Facility.

OBJECTIVE: This research aimed to understand the experiences of patients transitioning from hospitals to skilled nursing facilities (SNFs) by eliciting views from patients and hospital and skilled nursing facility staff. DESIGN: We conducted semi-structured interviews with hospital and skilled nursing facility staff and skilled nursing facility patients and their family members in an attempt to understand transitions between hospital and SNF. These interviews focused on all aspects of the discharge planning and nursing facility placement processes including who is involved, how decisions are made, patients' experiences, hospital-SNF communication, and the presence of programs to improve the transition process. PARTICIPANTS: Participants were 138 staff in 16 hospitals and 25 SNFs in 8 markets across the country, and 98 newly admitted, previously community-dwelling SNF patients and/or their family members in five of those markets. APPROACH: Interviews were qualitatively analyzed to identify overarching themes. KEY RESULTS: Patients reported they felt rushed in making their SNF decisions, did not feel they were appropriately prepared for the hospital-SNF transition or educated about their post-acute needs, and experienced transitions that felt chaotic, with complications they associated with timing and medications. Hospital and SNF staff expressed similar opinions, stating that transitions were rushed, there were problems with the timing of the discharge, with information transfer and medication reconciliation, and that patients were not appropriately prepared for the transition. Staff at some facilities reported programs designed to address these problems, but the efficacy of these programs is unknown. CONCLUSIONS: Results indicate problematic transitions stemming from insufficient care coordination and failure to appropriately prepare patients and their family members. Previous research suggests that problematic or hurried transitions from hospital to SNF are associated with medication errors and unnecessary rehospitalizations. Interventions to improve transitions from hospital to SNF that include a focus on patients and families are needed.

Population of Patients With Traumatic Brain Injury in Skilled Nursing Facilities: A Decade of Change.

OBJECTIVE: To describe the natural history of patients with traumatic brain injury (TBI) admitted to skilled nursing facilities (SNFs) following hospitalizations. SETTING: Between 2005 and 2014. PARTICIPANTS: Adults who had incident admissions to skilled nursing facilities (SNFs) with a diagnosis of TBI. DESIGN: Retrospective review of the Minimum Data Set. MAIN MEASURES: Main variables were cognitive and physical function, length of stay, presence of feeding tube, terminal condition, and dementia. RESULTS: Incident admissions to SNFs increased annually from 17 247 patients to 20 787 from 2005 to 2014. The percentage of patients with activities of daily living score 23 or more decreased from 25% to 14% (P < .05). The overall percentage of patients with severe cognitive impairment decreased from 18% to 10% (P < .05). More patients had a diagnosis of dementia in 2014 compared with previous years (P < .05), and the presence of a terminal condition increased from 1% to 1.5% over the 10-year period (P < .05). The percentage of patients who stayed fewer than 30 days was noted to increase steadily over the 10 years, starting with 48% in 2005 and ending with 53% in 2013 (P < .05). CONCLUSION: Understanding past trends in TBI admissions to SNFs is necessary to guide appropriate discharge and predict future demand, as well as inform SNF policy and practice necessary to care for this subgroup of patients.

Changes in Medicare costs with the growth of hospice care in nursing homes.

BACKGROUND: Nursing home residents' use of hospice has substantially increased. Whether this increase in hospice use reduces end-of-life expenditures is unknown. METHODS: The expansion of hospice between 2004 and 2009 created a natural experiment, allowing us to conduct a difference-in-differences matched analysis to examine changes in Medicare expenditures in the last year of life that were associated with this expansion. We also assessed intensive care unit (ICU) use in the last 30 days of life and, for patients with advanced dementia, feeding-tube use and hospital transfers within the last 90 days of life. We compared a subset of hospice users from 2009, whose use of hospice was attributed to hospice expansion, with a matched subset of non-hospice users from 2004, who were considered likely to have used hospice had they died in 2009. RESULTS: Of 786,328 nursing home decedents, 27.6% in 2004 and 39.8% in 2009 elected to use hospice. The 2004 and 2009 matched hospice and nonhospice cohorts were similar (mean age, 85 years; 35% male; 25% with cancer). The increase in hospice use was associated with significant decreases in the rates of hospital transfers (2.4 percentage-point reduction), feeding-tube use (1.2 percentage-point reduction), and ICU use (7.1 percentage-point reduction). The mean length of stay in hospice increased from 72.1 days in 2004 to 92.6 days in 2009. Between 2004 and 2009, the expansion of hospice was associated with a mean net increase in Medicare expenditures of $6,761 (95% confidence interval, 6,335 to 7,186), reflecting greater additional spending on hospice care ($10,191) than reduced spending on hospital and other care ($3,430). CONCLUSIONS: The growth in hospice care for nursing home residents was associated with less aggressive care near death but at an overall increase in Medicare expenditures. (Funded by the Centers for Medicare and Medicaid Services and the National Institute on Aging.).

Site of Death, Place of Care, and Health Care Transitions Among US Medicare Beneficiaries, 2000-2015.

Importance: End-of-life care costs are high and decedents often experience poor quality of care. Numerous factors influence changes in site of death, health care transitions, and burdensome patterns of care. Objective: To describe changes in site of death and patterns of care among Medicare decedents. Design, Setting, and Participants: Retrospective cohort study among a 20% random sample of 1 361 870 decedents who had Medicare fee-for-service (2000, 2005, 2009, 2011, and 2015) and a 100% sample of 871 845 decedents who had Medicare Advantage (2011 and 2015) and received care at an acute care hospital, at home or in the community, at a hospice inpatient care unit, or at a nursing home. Exposures: Secular changes between 2000 and 2015. Main Outcomes and Measures: Medicare administrative data were used to determine site of death, place of care, health care transitions, which are changes in location of care, and burdensome patterns of care. Burdensome patterns of care were based on health care transitions during the last 3 days of life and multiple hospitalizations for infections or dehydration during the last 120 days of life. Results: The site of death and patterns of care were studied among 1 361 870 decedents who had Medicare fee-for-service (mean [SD] age, 82.8 [8.4] years; 58.7% female) and 871 845 decedents who had Medicare Advantage (mean [SD] age, 82.1 [8.5] years; 54.0% female). Among Medicare fee-for-service decedents, the proportion of deaths that occurred in an acute care hospital decreased from 32.6% (95% CI, 32.4%-32.8%) in 2000 to 19.8% (95% CI, 19.6%-20.0%) in 2015, and deaths in a home or community setting that included assisted living facilities increased from 30.7% (95% CI, 30.6%-30.9%) in 2000 to 40.1% (95% CI, 39.9%-30.3% ) in 2015. Use of the intensive care unit during the last 30 days of life among Medicare fee-for-service decedents increased from 24.3% (95% CI, 24.1%-24.4%) in 2000 and then stabilized between 2009 and 2015 at 29.0% (95% CI, 28.8%-29.2%). Among Medicare fee-for-service decedents, health care transitions during the last 3 days of life increased from 10.3% (95% CI, 10.1%-10.4%) in 2000 to a high of 14.2% (95% CI, 14.0%-14.3%) in 2009 and then decreased to 10.8% (95% CI, 10.6%-10.9%) in 2015. The number of decedents enrolled in Medicare Advantage during the last 90 days of life increased from 358 600 in 2011 to 513 245 in 2015. Among decedents with Medicare Advantage, similar patterns in the rates for site of death, place of care, and health care transitions were observed. Conclusions and Relevance: Among Medicare fee-for-service beneficiaries who died in 2015 compared with 2000, there was a lower likelihood of dying in an acute care hospital, an increase and then stabilization of intensive care unit use during the last month of life, and an increase and then decline in health care transitions during the last 3 days of life.

Symptom trends in the last year of life from 1998 to 2010: a cohort study.

BACKGROUND: Calls for improvement in end-of-life care have focused attention on the management of pain and other troubling symptoms at the end of life. OBJECTIVE: To describe changes in pain intensity and symptom prevalence during the last year of life from 1998 to 2010. DESIGN: Observational study. SETTING: The HRS (Health and Retirement Study), a nationally representative longitudinal survey of community-dwelling U.S. residents aged 51 years or older. PARTICIPANTS: 7204 HRS participants who died while enrolled in the study and their family respondents. MEASUREMENTS: Proxy-reported pain during the last year of life and other symptoms for at least 1 month during the last year of life. Trends in pain intensity and symptom prevalence were analyzed for all decedents and within the categories of sudden death, cancer, congestive heart failure or chronic lung disease, and frailty. RESULTS: Between 1998 and 2010, proxy reports of the prevalence of any pain increased for all decedents from 54.3% (95% CI, 51.6% to 57.1%) to 60.8% (CI, 58.2% to 63.4%), an increase of 11.9% (CI, 3.1% to 21.4%). Reported prevalences of depression and periodic confusion also increased for all decedents by 26.6% (CI, 14.5% to 40.1%) and 31.3% (CI, 18.6% to 45.1%), respectively. Individual symptoms increased in prevalence among specific decedent categories, except in cancer, which showed no significant changes. The prevalence of moderate or severe pain did not change among all decedents or in any specific decedent category. LIMITATION: Use of proxy reports and limited information about some patient and surrogate variables. CONCLUSION: Despite national efforts to improve end-of-life care, proxy reports of pain and other alarming symptoms in the last year of life increased from 1998 to 2010. PRIMARY FUNDING SOURCE: National Institute of Nursing Research.

Regulating and Paying for Hospice and Palliative Care: Reflections on the Medicare Hospice Benefit.

Hospice began as a social movement outside of mainstream medicine with the goal of helping those dying alone and in unbearable pain in health care institutions. The National Hospice Study, undertaken to test whether hospice improved dying cancer patients' quality of life while saving Medicare money, found hospice care achieved comparable outcomes to traditional cancer care and was less costly as long as hospice lengths of stay were not too long. In 1982, before study results were final, Congress created a Medicare hospice benefit under a capitated per diem payment system restricting further treatment. In 1986 the benefit was extended to beneficiaries living in nursing homes. This change resulted in longer average lengths of stay, explosive growth in the number of hospices, particularly of the for-profit variety, and increases in total Medicare expenditures on hospice care. An increasingly high proportion of beneficiaries receive hospice care. However, over 30 percent are served fewer than seven days before they die, while very long stays are also increasingly common. These and other factors raise quality concerns about hospice being disconnected from the rest of the health care system. We offer suggestions regarding how hospice could be better integrated into the broader health care delivery system.

An Examination of the First 30 Days After Patients are Discharged to the Community From Hip Fracture Postacute Care.

BACKGROUND: Postacute care (PAC) rehabilitation aims to maximize independence and facilitate a safe community transition. Yet little is known about PAC patients' success in staying home after discharge or differences on this outcome across PAC providers. OBJECTIVES: Examine the percentage of PAC patients who remain in the community at least 30 days after discharge (ie, successful community discharge) after hip fracture rehabilitation and describe differences among PAC facilities based on this outcome. RESEARCH DESIGN: Retrospective observational study. SUBJECTS: Community-dwelling, Medicare fee-for-service beneficiaries 75 years of age and above who experienced their first hip fracture between 1999 and 2007 (n=880,779). PAC facilities admitting hip fracture patients in 2006. MEASURES: Successful community discharge, sites of readmission after PAC discharge. RESULTS: Between 1999 and 2007, 57% of patients achieved successful community discharge. Black were less likely (adjusted odds ratios=0.84; 95% confidence interval, 0.82-0.86) than similar whites to achieve successful community discharge. Among all who reentered the community (n=581,095), 14% remained in the community <30 days. Acute hospitals (67.5%) and institutional PAC (16.8%) were the most common sites of reentry. The median proportion of successful community discharge among facilities was 49% (interquartile range, 33%-66%). Lowest-quartile facilities admitted older (85.9 vs. 84.1 y of age), sicker patients (eg, higher rates of hospital complications 6.0% vs. 4.6%), but admitted fewer annually (7.1 vs. 19.3), compared with the highest quartile. CONCLUSIONS: Reentry into the health care system after PAC community discharge is common. Because of the distinct care needs of the PAC population there is a need for a quality measure that complements the current 30-day hospital readmission outcome and captures the objectives of PAC rehabilitation.

End-of-life transitions among nursing home residents with cognitive issues.

BACKGROUND: Health 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. METHODS: To 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. RESULTS: Among 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). CONCLUSIONS: Burdensome transitions are common, vary according to state, and are associated with markers of poor quality in end-of-life care.

Pre-hospitalization dysphagia and feeding tube placement in nursing home residents with advanced dementia.

BACKGROUND: Despite research demonstrating the risks of using feeding tubes in persons with advanced dementia, they continue to be placed. The natural history of dysphagia among patients with advanced dementia has not been examined. We conducted a secondary analysis of a national cohort of persons with advanced dementia staying at a nursing home stay before hospitalization to examine (1) pre-hospitalization dysphagia prevalence and (2) risk of feeding tube placement during hospitalization based on preexisting dysphagia. METHODS: A retrospective cohort study consisting of all nursing home (NH) residents (≥66 years) with advanced dementia (Cognitive Function Scale score ≥2), a hospitalization between 2013-2017, and a Minimum Data Set (MDS) 3.0 assessment within 120 days before hospitalization. Pre-hospitalization dysphagia status and surgically placed feeding tube insertion during hospitalization were determined by MDS 3.0 swallowing items and ICD-9 codes, respectively. A multivariate logistic model clustering on hospital was used to examine the association of dysphagia with percutaneous endoscopic gastrostomy (PEG) feeding tube placement after adjustment for confounders. RESULTS: Between 2013 and 2017, 889,983 persons with NH stay with advanced dementia (mean age: 84.5, SD: 7.5, and 63.5% female) were hospitalized. Pre-hospitalization dysphagia was documented in 5.4% (n = 47,574) and characterized by oral dysphagia (n = 21,438, 2.4%), pharyngeal dysphagia (n = 24,257, 2.7%), and general swallowing complaints/pain (n = 14,928, 1.7%). Overall, PEG feeding tubes were placed in 3529 patients (11.2%) with pre-hospitalization dysphagia, whereas 27,893 (88.8%) did not have pre-hospitalization dysphagia according to MDS 3.0 items. Feeding tube placement risk increased with the number of dysphagia items noted on the pre-hospitalization MDS (6 vs. 0 dysphagia variables: OR = 5.43, 95% CI: 3.19-9.27). CONCLUSIONS: Based on MDS 3.0 assessment, only 11% of PEG feeding tubes were inserted in persons with prior dysphagia. Future research is needed on whether this represents inadequate assessment or the impact of potentially reversible intercurrent illness resulting in feeding tube placement.

Patterns of national emergency department utilization by fee-for-service Medicare beneficiaries with dementia.

BACKGROUND: Individuals with Alzheimer's disease and related dementias (ADRD) often face high acute care clinical utilization and costs with unclear benefits in survival or quality of life. The emergency department (ED) is frequently the site of pivotal decisions in these acute care episodes. This study uses national Medicare data to explore this population's ED utilization. METHODS: Retrospective cohort study of persons aged ≥66 years enrolled in traditional Medicare with a Chronic Condition Warehouse diagnosis of dementia. Primary 1-year outcome measures included ED visits with and without hospitalization, ED visits per 100 days alive, and health-care costs. A multivariate random effects regression model (clustered by county of residence), adjusted for sociodemographics and comorbidities, examined how place of care on January 1, 2018, was associated with subsequent ED utilization. RESULTS: In 2018, 2,680,006 ADRD traditional Medicare patients (mean age 82.9, 64.2% female, 9.4% Black, 6.2% Hispanic) experienced a total of 3,234,767 ED visits. Over half (52.2%) of the cohort experienced one ED visit, 15.5% experienced three or more, and 37.1% of ED visits resulted in hospitalization. Compared with ADRD patients residing at home without services, the marginal difference in ED visits per 100 days alive varied by location of care. Highest differences were observed for those with hospitalizations (0.48 visits per 100 days alive, 95% confidence interval [CI] 0.47-0.49), skilled nursing facility (rehab/skilled nursing facility [SNF]) stays (0.27, 95% CI 0.27-0.28), home health stays (0.25, 95% CI 0.25-0.26), or observation stays (0.82, 95% CI 0.77-0.87). Similar patterns were observed with ED use without hospitalization and health-care costs. CONCLUSIONS: Persons with ADRD frequently use the ED-particularly those with recent hospitalizations, rehab/SNF stays, or home health use-and may benefit from targeted interventions during or before the ED encounters to reduce avoidable utilization and ensure goal-concordant care.

Advanced dementia: state of the art and priorities for the next decade.

Dementia is a leading cause of death in the United States. This article outlines the current understanding of advanced dementia and identifies research priorities for the next decade. Research over the past 25 years has largely focused on describing the experience of patients with advanced dementia. This work has delineated abundant opportunities for improvement, including greater recognition of advanced dementia as a terminal illness, better treatment of distressing symptoms, increased access to hospice and palliative care services, and less use of costly and aggressive treatments that may be of limited clinical benefit. Addressing those opportunities must be the overarching objective for the field in the coming decade. Priority areas include designing and testing interventions that promote high-quality, goal-directed care; health policy research to identify strategies that incentivize cost-effective and evidence-based care; implementation studies of promising interventions and policies; and further development of disease-specific outcome measures. There is great need and opportunity to improve outcomes, contain expenditures, reduce disparities, and better coordinate care for the millions of persons in the United States who have advanced dementia.