Evaluating the Implementation Fidelity of a Pilot Pragmatic Randomized Clinical Trial Comparing Daily-Delivered Meals to Mailed Frozen Meals.

In pragmatic clinical trials (PCTs), the intervention is carried out by participating sites instead of research staff. In this paper, we evaluate study sites' implementation adherence during a pilot PCT of home-delivered meals for older adults with dementia. Participants at three home-delivered meal programs were randomized to receive either (1) meals delivered daily or (2) frozen meals mailed every two weeks; participants' outcomes were tracked for six months. Using the adherence domains from the Framework for Implementation Fidelity, we identified six metrics to assess adherence, with a total possible adherence score ranging from 6 (low adherence) to 18 (high adherence); all three sites scored within the top quartile of adherence. Despite challenges to meal delivery during the COVID-19 pandemic, sites successfully implemented the intervention, justifying a follow-on PCT to test the comparative effectiveness of models of meal delivery on the time to nursing home placement for people living with dementia.

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.

Feasibility of conducting qualitative research with persons living with dementia and their caregivers during a home-delivered meals pilot trial.

BACKGROUND: Among older adults, food insecurity is associated with poor health status and health outcomes; people living with dementia (PLWD) are at increased risk for insecurity. Approaches to addressing food insecurity among homebound older adults include two modes of home-delivered meals: (1) meals delivered daily to participants' homes by a volunteer or paid driver who socializes with the client or (2) frozen meals that are mailed to participants' homes. Research has not examined benefits of these meals for PLWD or their caregivers nor compared the effectiveness of these two approaches in reducing food insecurity. The objective of this study was to test the processes for recruiting and engaging in qualitative research with PLWD and caregivers in an effort to understand the context, implementation, and mechanisms of impact by which relationships between meal delivery and outcomes may be achieved in preparation for a larger, follow-on study. METHODS: This is a qualitative sub-study of a pilot, multisite, two-arm pragmatic feasibility trial comparing the effect of two modes of meal delivery on nursing home placement among 243 PLWD. In this sub-study, we tested recruitment and enrollment procedures and piloted interview guides among a subset of participants and caregivers. RESULTS: We recruited and conducted interviews with nine PLWD and seven caregivers. In testing the informed consent process, all participants were able to consent to be interviewed, and PLWD all demonstrated capacity to consent. We successfully used a cognitive screener to obtain scores of cognitive impairment for PLWD and observed scores indicating a broad range of function. Our interview guides successfully resulted in information about the context, implementation, and mechanisms of impact for meal delivery during the pilot. CONCLUSIONS: In addition to establishing feasibility for the future trial, the substantive findings identified through the qualitative interviews provide an initial understanding of the contextual factors for meal delivery and the potential mechanisms of impact across meal delivery types that warrant further examination in a full-scale trial. Findings from our study provide crucial pilot data to support a follow-on trial to understand how to address food insecurity among PLWD. NAME OF THE REGISTRY: ClinicalTrials.gov TRIAL REGISTRATION: NCT04850781 DATE OF REGISTRATION: April 20, 2021, retrospectively registered https://clinicaltrials.gov/ct2/show/NCT04850781.

Comparison of the Pathway to Hospice Enrollment Between Medicare Advantage and Traditional Medicare.

Importance: Older adults in Medicare Advantage (MA) enroll in hospice at higher rates than those in traditional Medicare (TM), but it is unclear whether the pathway of care prior to hospice use differs between MA and TM. Objective: To examine the site of care prior to hospice enrollment for MA beneficiaries compared with those in TM. Design, Setting, and Participants: This population-based, retrospective cross-sectional study used Medicare claims data for decedents in calendar years 2011, 2013, 2016, and 2018 who enrolled in hospice in the last 90 days of life. Data were analyzed from February 11, 2022, to October 24, 2022. Exposures: Enrollment in MA or TM in the last month of life. Main Outcomes and Measures: The main outcome was the site of care prior to hospice enrollment, defined as hospital, nursing home, and home with or without home health, dichotomized as community vs hospital in a logistic regression model. Covariates included decedent demographics, hospice primary diagnosis, and county-level MA penetration. Differences in hospice length of stay between MA beneficiaries and TM beneficiaries were assessed using linear and logistic regression models. Results: In this study of 3 164 959 decedents, mean (SD) age was 83.1 (8.6) years, 55.8% were female, and 28.8% were enrolled in MA. Decedents in MA were more likely to enroll in hospice from a community setting than were those in TM, although the gap narrowed over time from an unadjusted 11.1% higher rate of community enrollment in MA vs TM in 2011 (50.1% vs 39.0%) to 8.1% in 2018 (46.4% vs 38.3%). In the primary adjusted analysis over the entire study period, MA enrollment was associated with an 8.09-percentage point (95% CI, 7.96-8.21 percentage points) higher rate of hospice enrollment from the community vs all other sites. This association remained in multiple sensitivity analyses to account for potential differences in the populations enrolled in MA vs TM. The mean overall hospice length of stay was 0.29 days (95% CI, 0.24-0.34 days) longer for MA decedents compared with TM decedents. Conclusions and Relevance: Compared with TM beneficiaries, those in MA were more likely to enroll in hospice from community settings vs following inpatient stays. However, hospice length of stay was not substantially different between MA and TM. Further research is needed to understand how MA plans influence hospice use and the direct association with quality of end-of-life care as reported by older adults and their families.

Pain Impacting Quality of Life in Persons with Dementia Dying in the Nursing Home by Alternative Medicare Payment Model.

Background: Medicare alternative payment models were created to improve health care value by controlling costs and improving care quality. Objective: To determine if prevalence of pain affecting quality of life (QoL) differs by Medicare payment model among nursing home (NH) decedents with dementia at the end of life. Setting/Subjects: NH decedents in 2017/2018 in the United States with dementia who self-reported pain on a Minimum Data Set assessment in the last 30 days of life. Measurements: Main outcome was pain impacting QoL (i.e., affecting day-to-day activities or sleep). Multivariable logistic analysis examined the association between payment model (traditional Medicare [TM], Medicare Advantage [MA], or accountable care organizations [ACOs]) and pain impacting QoL after controlling for potential confounders. Results: There were 115,757 NH residents with dementia who self-reported pain in the last 30 days of life. Of those, 17.8% (n = 20,585) reported having pain the last five days from assessment, which varied by Medicare payment model (17.7% in TM, 17.5% in MA, and 19.1% in ACOs; p < 0.001). Among decedents reporting pain, 23.6% of ACO decedents reported pain affecting QoL compared to 22.1% in MA and 21.6% in TM (p = 0.09). After adjustment, decedents in ACOs compared to TM had greater predicted probability of pain affecting QoL (absolute marginal difference 0.017, 95% CI 0.00-0.035, p = 0.05), and persons in MA did not differ from persons in TM (absolute marginal difference 0.005, 95% CI -0.008 to 0.019, p = 0.41). Conclusions and Implications: Among dementia decedents dying with pain, pain impacted QoL in more than one in five persons. All payment models can improve pain management.

Pathway to Hospice: How Has Place of Care before Hospice Changed with the Growth of Hospice in the United States?

Background: Hospice use among Medicare decedents increased from 21.6% in 2000 to 51.6% in 2019. Whether this growth has been accompanied by more referrals to hospice directly from the community is not known. Objective: To assess trends in place of care before hospice enrollment. Design: Retrospective cohort from 2011 to 2018. Subjects: Medicare decedents age ≥66 years. Measure: Location of care before hospice enrollment in the last 90 days of life, defined as: the community with and without home health, short- or long-term nursing facility, or inpatient hospital. A county-level random effects model examined changes in enrollment from the community after adjusting for admitting diagnosis, age, race/ethnicity, sex, and Medicaid participation. Results: Among hospice enrollees (N = 7,650,933), 27.7% transitioned to hospice from the community, 31.8% transitioned from the hospital, and 10.1% transitioned after short- or long-term nursing facility stay. Rates of enrollment to hospice from the community remained stable from 35.1% in 2011 to 34.3% in 2018. After adjustment, the proportion enrolling in hospice from the community decreased by 1.2% (95% confidence interval -1.0% to 1.4%). Place of care before hospice enrollment in 2018 varied by hospice admitting diagnosis, with patients with cancer more likely to enroll from the community (39.5%) and patients with cerebrovascular accidents from the hospital (53.2%). Prior place of care varied by state, with Florida having the highest rate of the enrollment following hospitalization (47.8%). Conclusion: Despite the growth of hospice, the site of care before hospice enrollment has remained relatively stable and was strongly influenced by region.

Mechanical Ventilation and Survival in Patients With Advanced Dementia in Medicare Advantage.

CONTEXT: Medicare Advantage (MA) cares for an increasing proportion of traditional Medicare (TM) patients although, the association of MA on low-value care among hospitalized patients is uncertain. OBJECTIVES: We sought to determine whether invasive mechanical ventilation (IMV) use or mortality differs among hospitalized patients with advanced dementia (AD) enrolled in MA vs. TM and the influence of hospital MA concentration. METHODS: Retrospective cohort of hospitalized Medicare patients from 2016 to 2017 who were ≥66 years old with AD (n=147,153) and had a hospitalization with an assessment completed during a nursing home stay ≤120 days prior to that hospitalization indicating AD and severe cognitive/functional impairment. MA enrollment was ascertained at hospitalization; IMV use and 30- and 365-day mortality were determined via Medicare data. Multivariable logistic regression models clustered by hospital were used. RESULTS: Among hospitalized Medicare patients with AD, 27,253 (19%) were enrolled in MA, mean age was 84 (95% CI: 83.9-84.0) and 92,736 (63%) were female. Enrollment in MA was associated with increased IMV use (Adjusted Odds Ratio(AOR)=1.11, 95% CI: 1.04-1.18), 30- (Adjusted Hazard Ratio(AHR)=1.09, 95% CI: 1.05-1.12) and 365-day mortality (AHR=1.12, 95% CI: 1.08-1.16) compared to TM. Use of IMV was not different based on concentration of MA at the hospital level. CONCLUSION: MA may reduce hospitalizations, however, once hospitalized, patients with AD enrolled in MA experience higher rates of IMV use and worse 30- and 365-day mortality compared to TM patients. Higher hospital concentration of MA did not reduce use of IMV. MA may not offer significant benefits in reducing low-value care among patients hospitalized with serious illness, questioning the benefits of this care model.

Dementia diagnosis in the hospital and outcomes among patients with advanced dementia documented in the Minimum Data Set.

BACKGROUND: Individuals with dementia do not always have a diagnosis of dementia noted on their hospital claims. Whether this lack of documentation is associated with patient outcomes is unknown. We examined the association between a dementia diagnosis listed on a hospital claim and patient outcomes among individuals with a Minimum Data Set (MDS) assessment. METHODS: A retrospective cohort study was conducted using administrative claims data and nursing home MDS assessments. Hospitalized patients aged 66 and older with advanced dementia noted on an MDS assessment completed within 120 days prior to their first hospitalization in 2017 were included. Advanced dementia was defined based on an MDS diagnosis of dementia, dependency in four or more activities of daily living, and a Cognitive Function Scale score indicative of moderate to severe impairment. Multilevel regression with a random intercept at the hospital level was used to examine the relationship between documentation of dementia in inpatient hospital Medicare claims and the following patient outcomes after adjusting for patient and hospital characteristics: invasive mechanical ventilation (IMV) use, intensive care unit or coronary care unit (ICU/CCU) use, 30-day mortality, and hospital length of stay (LOS). RESULTS: In 2017, among 120,989 patients with advanced dementia and a nursing home stay, 90.57% had a dementia diagnosis on their hospital claims. In adjusted models, documentation of a dementia diagnosis was associated with lower use of the ICU/CCU (adjusted odds ratio [AOR]: 0.78 [95% confidence interval 0.74, 0.81]), use of IMV (AOR: 0.50 [0.47, 0.54]), and 30-day mortality (AOR: 0.81 [0.77, 0.85]). Patients with a dementia diagnosis had a shorter LOS. CONCLUSIONS: Among patients with advanced dementia, those whose dementia diagnosis was documented on their inpatient hospital Medicare claim experienced lower use of ICU/CCU, use of IMV, lower 30-day mortality, and shorter LOS than those whose diagnosis was not documented.

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.

Dying with dementia in Medicare Advantage, Accountable Care Organizations, or traditional Medicare.

BACKGROUND/OBJECTIVE: Medicare Advantage (MA) and Accountable Care Organizations (ACOs) operate under incentives to reduce burdensome and costly care at the end of life. We compared end-of-life care for persons with dementia who are in MA, ACOs, or traditional Medicare (TM). DESIGN, SETTING, AND PARTICIPANTS: Retrospective study of decedents with dementia enrolled in MA, attributed to an ACO, or in TM. Decedents had a nursing home stay between 91 and 180 days prior to death, two or more functional impairments, and mild to severe cognitive impairment. MEASUREMENTS: Hospitalization, invasive mechanical ventilation (IMV) use, and in-hospital death in the last 30 days of life reported in Medicare billing. RESULTS: Among 370,094 persons with dementia, 93,801 (25.4%) were in MA (mean age [SD], 86.9 [7.7], 67.6% female), 39,586 (10.7%) were ACO attributed (mean age [SD], 87.2 [7.6], 67.3% female), and 236,707 (63.9%) were in TM (mean age [SD], 87.0 [7.8], 67.6% female). The proportion hospitalized in the last 30 days of life was higher among TM enrollees (27.9%) and those ACO attributed (28.1%) than among MA enrollees (20.5%, p ≤ 0.001). After adjustment for socio-demographics, cognitive and functional impairments, comorbidities, and Hospital Referral Region, adjusted odds of hospitalization in the 30 days prior to death was 0.72 (95% confidence interval [CI] 0.70-0.74) among MA enrollees and 1.05 (95% CI 1.02-1.09) among those attributed to ACOs relative to TM enrollees. Relative to TM, the adjusted odds of death in the hospital were 0.78 (95% CI 0.75-0.81) among MA enrollees and 1.02 (95% CI 0.96-1.08) for ACO participants. Dementia decedents in MA had a lower likelihood of IMV use (adjusted odds ratio 0.80, 95% CI 0.75-0.85) compared to TM. CONCLUSIONS: Among decedents with dementia, MA enrollees but not decedents in ACOs experienced less costly and potentially burdensome care compared with those with TM. Policy changes are needed for ACOs.

"If We Turned Our Backs, They Would Ignore Our Wishes": Bereaved Family Perceptions of Concordance of Care at the End of Life.

Background: The key to high-quality care at the end of life is goal-concordant care, defined as care that is consistent with patient wishes. Objectives: To characterize decedent wishes for care at the end of life and to examine next of kin narratives of their loved ones' perceptions of whether wishes were honored. Design: Mortality follow-back survey and in-depth interviews. Setting/Subjects: Survey responses (n = 601) were from next of kin of decedents who died in the San Francisco Bay area of the United States. Interviews were conducted with 51 next of kin, of whom 14 indicated that the decedent received care that was inconsistent with their wishes. Measurements: The survey asked if the decedent had wishes or plans for care and if care provided ever went against those wishes. In-depth interviews focused on aspects of care at the end of life that were not consistent with the decedent's wishes. Results: Approximately 10% of next of kin who reported on the survey that the decedent had specific wishes for medical care at the end of life also reported that the decedent received care that went against their wishes in the last month of life. The main theme of the in-depth interviews with next of kin who reported care that went against wishes was that discordant care was inconsistent with wishes for comfort-focused care and a lack of symptom palliation. Conclusions: Despite decades of work to improve quality of end-of-life care, poor pain and symptom management that result in lack of comfort remain the main reason that next of kin state wishes were not honored.

Trends in Noninvasive and Invasive Mechanical Ventilation Among Medicare Beneficiaries at the End of Life.

Importance: End-of-life care is costly, and decedents often experience overtreatment or low-quality care. Noninvasive ventilation (NIV) may be a palliative approach to avoid invasive mechanical ventilation (IMV) among select patients who are hospitalized at the end of life. Objective: To examine the trends in NIV and IMV use among decedents with a hospitalization in the last 30 days of life. Design, Setting, and Participants: This population-based cohort study used a 20% random sample of Medicare fee-for-service beneficiaries who had an acute care hospitalization in the last 30 days of life and died between January 1, 2000, and December 31, 2017. Sociodemographic, diagnosis, and comorbidity data were obtained from Medicare claims data. Data analysis was performed from September 2019 to July 2020. Exposures: Use of NIV or IMV. Main Outcomes and Measures: Validated International Classification of Diseases, Ninth Revision, Clinical Modification or International Statistical Classification of Diseases, Tenth Revision, Clinical Modification procedure codes were reviewed to identify use of NIV, IMV, both NIV and IMV, or none. Four subcohorts of Medicare beneficiaries were identified using primary admitting diagnosis codes (chronic obstructive pulmonary disease [COPD], congested heart failure [CHF], cancer, and dementia). Measures of end-of-life care included in-hospital death (acute care setting), hospice enrollment at death, and hospice enrollment in the last 3 days of life. Random-effects logistic regression examined NIV and IMV use adjusted for sociodemographic characteristics, admitting diagnosis, and comorbidities. Results: A total of 2 470 435 Medicare beneficiaries (1 353 798 women [54.8%]; mean [SD] age, 82.2 [8.2] years) were hospitalized within 30 days of death. Compared with 2000, the adjusted odds ratio (AOR) for the increase in NIV use was 2.63 (95% CI, 2.46-2.82; % receipt: 0.8% vs 2.0%) for 2005 and 11.84 (95% CI, 11.11-12.61; % receipt: 0.8% vs 7.1%) for 2017. Compared with 2000, the AOR for the increase in IMV use was 1.04 (95% CI, 1.02-1.06; % receipt: 15.0% vs 15.2%) for 2005 and 1.63 (95% CI, 1.59-1.66; % receipt: 15.0% vs 18.2%) for 2017. In subanalyses comparing 2017 with 2000, similar trends found increased NIV among patients with CHF (% receipt: 1.4% vs 14.2%; AOR, 14.14 [95% CI, 11.77-16.98]) and COPD (% receipt: 2.7% vs 14.5%; AOR, 8.22 [95% CI, 6.42-10.52]), with reciprocal stabilization in IMV use among patients with CHF (% receipt: 11.1% vs 7.8%; AOR, 1.07 [95% CI, 0.95-1.19]) and COPD (% receipt: 17.4% vs 13.2%; AOR, 1.03 [95% CI, 0.88-1.21]). The AOR for increased NIV use was 10.82 (95% CI, 8.16-14.34; % receipt: 0.4% vs 3.5%) among decedents with cancer and 9.62 (95% CI, 7.61-12.15; % receipt: 0.6% vs 5.2%) among decedents with dementia. The AOR for increased IMV use was 1.40 (95% CI, 1.26-1.55; % receipt: 6.2% vs 7.6%) among decedents with cancer and 1.28 (95% CI, 1.17-1.41; % receipt: 5.7% vs 6.2%) among decedents with dementia. Among decedents with NIV vs IMV use, lower rates of in-hospital death (50.3% [95% CI, 49.3%-51.3%] vs 76.7% [95% CI, 75.9%-77.5%]) and hospice enrollment in the last 3 days of life (57.7% [95% CI, 56.2%-59.3%] vs 63.0% [95% CI, 60.9%-65.1%]) were observed along with higher rates of hospice enrollment (41.3% [95% CI, 40.4%-42.3%] vs 20.0% [95% CI, 19.2%-20.7%]). Conclusions and Relevance: This study found that the use of NIV rapidly increased from 2000 through 2017 among Medicare beneficiaries at the end of life, especially among persons with cancer and dementia. The findings suggest that trials to evaluate the outcomes of NIV are warranted to inform discussions about the goals of this therapy between clinicians and patients and their health care proxies.

Bereaved Family More Likely to Report "Too Little" Care than "Too Much" Care at the End of Life.

Background: An often-stated concern is that dying persons receive too much aggressive medical care. Objective: Examine next-of-kin perceptions of the amount of medical care received in the last month of life. Design: Mixed-methods study with 623 survey responses and in-depth interviews with a subsample of 17 respondents. Subjects: Nontraumatic deaths 18 years and older in San Francisco Bay area. Measure: The survey asked: "During the last month of your family member's life, did he or she receive too little, the right amount, or too much medical care?" Additionally, surveys examined 18 measures of quality of care in the last month of life, reporting concerns or unmet needs with staff communication, symptom management, emotional support, physician communication, treating the patient with dignity, respecting a person's culture, spiritual support, and providing timely help after hours. Results: Of the 623 survey respondents, 16.9% reported their loved one received "too little" care while only 1.4% reported "too much." Likelihood of reporting too little medical care did not differ by age, gender, or being insured by Medicaid only. Respondents who reported "too little" compared with those that stated the "right amount" reported higher unmet needs for symptom palliation, physician communication concerns, with other important opportunities to improve the quality of care. Among the 17 in-depth interviews of those indicating "too little" care on the structured survey, the predominant concern (n = 10) was inadequate symptom management. Conclusion: While the majority of respondents indicated their loved one received the right amount of medical care at the end of life, a notable minority (one in six) indicated that their loved one received too little care.

Racial Differences in End-of-Life Care Quality between Asian Americans and Non-Hispanic Whites in San Francisco Bay Area.

Background: Little is known about end-of-life care experiences of Asian Americans and gaps in end-of-life care quality between Asians and non-Hispanic whites. Objective: Compare the perceptions of next-of-kin of Asian and non-Hispanic white decedents on end-of-life care quality. Design: Mortality follow-back survey. Setting/Subjects: Population-based sample of 108 Asian and 414 non-Hispanic white bereaved family members or close friends of adult, nontraumatic deaths in the San Francisco Bay area in 2018. Measurements: Survey items examined whether health care professionals treated the dying person with respect and dignity, respected their cultural traditions, respected their religious or spiritual beliefs, provided enough information about what to expect during the last month of life, provided emotional support to the family after the patient's death, and whether the dying person and the family received the needed help after work hours. Results: Of the 623 surveys (weighted n = 6513), 108 (weighted percentage = 17.6%) were from caregivers of Asian decedents. Almost half of these respondents indicated that they did not always experience respect for their cultural traditions (45.9% vs. 21.8%, p = 0.00) or respect for their religious and spiritual beliefs (42.2% vs. 24.5%, p = 0.01). With the exception of two outcomes, worse caregiver-reported care quality for Asian decedents persisted after adjustment for cause of death, site of death, type of health insurance, respondent's relationship to decedent, decedent age, and respondent education. Conclusions: Compared with caregivers of non-Hispanic whites, caregivers of Asian decedents reported unmet needs for caregiver support and lack of respect for cultural traditions and religious/spiritual beliefs.

The Black and White of Invasive Mechanical Ventilation in Advanced Dementia.

BACKGROUND/OBJECTIVES: Over the past decade, feeding tube use in nursing home residents with advanced dementia has declined by 50% among white and black patients. Little is known about whether a similar reduction has occurred in other invasive interventions, such as mechanical ventilation. DESIGN: Retrospective cohort study. SETTING: Acute-care hospitals in the United States. PARTICIPANTS: Medicare beneficiaries with advanced dementia who previously resided in a nursing home and were hospitalized between 2001 and 2014 with pneumonia and/or septicemia and of either black or white race. MEASUREMENT: Invasive mechanical ventilation (IMV), as identified by International Classification of Diseases (ICD) procedure codes. Two multivariable logistic regression models examined the association between race and the likelihood of receiving IMV, adjusting for patients' demographics, physical function, and comorbidities. A hospital fixed-effects model examined the association of race within a hospital, whereas a random-effects logistic model was used to estimate the between-hospital variation in the probability of receiving IMV and examine the overall association of race and use of IMV. RESULTS: Between 2001 and 2014, 289,017 patients with advanced dementia were hospitalized for pneumonia or septicemia. Use of IMV increased from 3.7% to 12.1% in white patients and from 8.6% to 21.8% in blacks. Among those ventilated, 1-year mortality rates remained high, at 82.7% for whites and 84.2% for blacks dying in 2013. Compared with whites, blacks had a higher odds of receiving IMV in the fixed-effects (within-hospital) model (adjusted odds ratio (AOR) = 1.34; 95% confidence interval (CI) = 1.29-1.39) and in the random-effects (between-hospital) model (AOR = 1.46; 95% CI = 1.40-1.51). CONCLUSION: IMV use in patients with advanced dementia has increased substantially, with black patients having a larger increase than whites, based, in part, on the hospitals where black patients receive care.

Continuity of Hospital Care and Feeding Tube Use in Cognitively Impaired Hospitalized Persons.

OBJECTIVES: Hospitalists are increasingly the attending physician for hospitalized patients, and the scheduling of their shifts can affect patient continuity. For dementia patients, the impact is unknown. DESIGN: Longitudinal study using physician billing claims between 2000 and 2014 to examine the association of continuity of care with the insertion of a feeding tube (FT). SETTING: US hospitals. PARTICIPANTS: Between 2000 and 2014, 166,056 hospitalizations of patients with a prior nursing home stay, advanced cognitive impairment, and impairments in four or more activities of daily living (mean age = 84.2 years; 30.4% male; 81.0% white). MEASUREMENTS: Continuity of care measured at the hospital level with the Sequential Continuity Index (SECON; range = 0 to 100; higher score indicates higher continuity). RESULTS: Rates of a hospitalist acting as the attending physician increased from 9.6% in 2000 to 22.6% in 2010, whereas a primary care physician with a predominant outpatient focus acting as the attending physician decreased from 50.3% in 2000 to 12.6% in 2014. Post-2010, a mixture of physician specialties increased from 55.5% to 66.4% with a reduction in hospitalists from 22.6% (2010) to 14.1% (2013). Continuity of care decreased over time with SECON dropping from 63.0 to 43.5. Adjusting for patient baseline risk factors, a nonlinear association was observed between SECON and FT insertion. Using cubic splines in the multivariate logistics regression model, the risk of FT insertion in hospitals where the SECON score dropped from 82 to 23 had an adjusted risk ratio (ARR) of FT insertion of 1.48 (95% confidence interval [CI] = 1.34-1.63); hospitals in which SECON dropped from 51 to 23 had an ARR of FT insertion of 1.38 (95% CI = 1.27-1.50). CONCLUSION: Hospitalized dementia patients in hospitals in which continuity of care was lower had higher rates of FT insertions. Newer models of care are needed to enhance care continuity and thus ensure treatment consistent with likely outcomes of care and goals of care. J Am Geriatr Soc 68:1852-1856, 2020.

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.