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.

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.

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.

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.

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.

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.

"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.

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.