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.

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.

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.

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.

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.

Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians.

Objectives: This study was designed to understand the experience and needs surrounding advance care planning (ACP) discussions for surrogate decision-makers of persons with advanced dementia (PWAD). Methods: Semi-structured qualitative interviews based on end-of-life communication models with a convenience sample of 17 clinicians, and 15 surrogates of PWAD. We used a hybrid approach of deductive and inductive thematic analysis. Results: Two main themes emerged. 1)Deficits in communication: Often surrogates did not fully comprehend the disease trajectory or medical treatments, like the likelihood of pneumonia and use of mechanical ventilation, nor concepts related to ACP, particularly legal documents and orders such as Do Not Hospitalize, which made decision-making challenging as perceived by clinicians. 2)Decision-making conflicts: Clinicians perceived a disconnect between surrogates' understanding of their loved one's preferences and knowing how or when to operationalize them. Conclusions: Significant gaps in knowledge surrounding disease trajectory and complications, such as pneumonia, and aspects of ACP, exist. These gaps create decision-making challenges for surrogates and clinicians alike. Innovation: This study assessed both clinicians and surrogate decision-makers' perspectives on communication and decision-making concerning care preferences, goals, and ACP. The study findings from a national cohort can inform decision-support interventions for clinicians and surrogate decision-makers of PWAD.

Reforming the Medicare Hospice Benefit-Unintended Consequences.

This JAMA Forum discusses the reasons for changing the Medicare hospice benefit program, the potential serious unintended consequences, and provides recommendations for the testing of new alternative payment models.

Hospice-The Time Is Now for Additional Integrity Oversight.

This JAMA Forum discusses the concerning trend of for-profit hospice programs in the US, the current issues and problems with hospice care, and the need for increased oversight to ensure and improve quality for patients.

Increased Medicare Advantage Penetration Is Associated With Lower Postacute Care Use For Traditional Medicare Patients.

Medicare Advantage (MA) plans, which accounted for 45 percent of total Medicare enrollment in 2022, are incentivized to minimize spending on low-value services. Prior research indicates that MA plan enrollment is associated with reduced postacute care use without adverse impacts on patient outcomes. However, it is unclear whether a rising MA enrollment level is associated with a change in postacute care use in traditional Medicare, especially given growing participation in traditional Medicare Alternative Payment Models that have been found to be associated with lower postacute care spending. We hypothesize that market-level MA expansion is associated with reduced postacute care use among traditional Medicare beneficiaries-a "spillover" effect of providers modifying their practice patterns in response to MA plans' incentives. We found increased MA market penetration associated with reduced postacute care use among traditional Medicare beneficiaries, without a corresponding increase in hospital readmissions. This association was generally stronger in markets with a greater share of traditional Medicare beneficiaries attributed to accountable care organizations, suggesting that policy makers should account for MA penetration when evaluating potential savings in Alternative Payment Models within traditional Medicare.

Protecting seriously ill populations during pragmatic clinical trials.

Pragmatic clinical trials (PCTs) emphasize real-world effectiveness methodology to address the limitations of results from explanatory randomized clinical trials (RCTs), which often fail to translate to real-world medical practice. An inherent tension in the conduct of PCTs is that the research must impose a minimal burden on patients and health care institutions. PCTs prioritize outcome measures from existing data sources to minimize data collection burden; however, a lack of patient-reported outcomes may result in gaps in safety for vulnerable populations, such as those with serious illnesses. One proposed standard for judging the readiness of a study for a pragmatic trial is a ranking system that assigns PCTs a lower rank if they impose additional data collection burdens. However, this results in the wide use of measures of health care utilization and costs while patient experience measures, which could capture adverse unintended consequences, are omitted. In this article, we make the case for a risk-based approach to imposing additional data collection in PCTs to capture potential safety and patient experience outcomes, using examples from "real life" implemented interventions to improve end-of-life care through the Liverpool Pathway and through the implementation of Physician Orders for Life Sustaining Treatment (POLST) in Oregon.

Association of Hospice Profit Status With Family Caregivers' Reported Care Experiences.

Importance: Expansive growth in the US hospice market has been driven almost exclusively by an increase in for-profit hospices. Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff. However, prior studies have not reported on the associations of these differences in care patterns with hospice care quality. Patient- and family-centeredness is a core element of hospice care quality that is measured through surveys of care experiences. Objective: To examine whether differences in profit status are associated with family caregivers' reports of hospice care experiences and assess factors that may be associated with observed differences in care experiences by profit status. Design, Setting, and Participants: Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from 653 208 caregiver respondents, reflecting care received from 3107 hospices between April 2017 and March 2019, were used for a cross-sectional examination of hospice care experiences by profit status. Data analysis was performed from January 2020 to November 2022. Main Outcomes and Measures: Outcomes were case-mix-adjusted and mode-adjusted top-box scores for 8 measures of hospice care experiences, including communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics. Results: There were 906 not-for-profit and 1761 for-profit hospices with mean (SD) time in operation of 25.7 (7.8) years and 13.8 (8.0) years, respectively. Mean (SD) decedent age at death was 82.8 (2.3) years, similar for not-for-profit and for-profit hospices. The mean proportion of patients who were Black, Hispanic, and White was 4.9%, 0.9%, and 91.4% for not-for-profit hospices and 9.0%, 2.2%, and 85.4% for for-profit hospices, respectively. Family caregivers reported worse care experiences at for-profit hospices than at not-for-profit hospices for all measures. Significant differences in average hospice performance by profit status remained after adjusting for hospice characteristics. However, for-profit hospice performance varied, with 548 of 1761 (31.1%) for-profit hospices scoring 3 or more points below the national hospice average of overall performance and 386 of 1761 (21.9%) scoring 3 or more points above the average. In contrast, only 113 of 906 (12.5%) not-for-profit hospices scored 3 or more points below the average, and 305 of 906 (33.7%) scored 3 or more points above the average. Conclusions and Relevance: In this cross-sectional study of CAHPS Hospice Survey data, caregivers of patients receiving hospice care reported substantially worse care experiences in for-profit than in not-for-profit hospices; however, there was variation in reported experiences among both types of hospices. Public reporting of hospice quality is important.

Garbage in, Garbage out-Words of Caution on Big Data and Machine Learning in Medical Practice.

This JAMA Forum discusses developments with machine learning and artificial intelligence and provides examples showing how humans are required in these processes to avoid errors in classification.

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.

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.

State Regulations and Assisted Living Residents' Potentially Burdensome Transitions at the End of Life.

Background: Potentially burdensome transitions at the end of life (e.g., repeated hospitalizations toward the end of life and/or health care transitions in the last three days of life) are common among residential care/assisted living (RC/AL) residents, and are associated with lower quality of end-of-life care reported by bereaved family members. We examined the association between state RC/AL regulations relevant to end-of-life care delivery and the likelihood of residents experiencing potentially burdensome transitions. Methods: Retrospective cohort study combining RC/AL registries of states' regulations with Medicare claims data for residents in large RC/ALs (i.e., 25+ beds) in the United States on the 120th day before death (N = 129,153), 2017-2019. Independent variables were state RC/AL regulations relevant to end-of-life care, including third-party services, staffing, and medication management. Analyses included: (1) separate logistic regression models for each RC/AL regulation, adjusting for sociodemographic covariates; (2) separate logistic regression models with a Medicare fee-for-service (FFS) subgroup to control for comorbidities, and (3) multivariable regression analysis, including all regulations in both the overall sample and the Medicare FFS subgroup. Results: We found a lack of associations between potentially burdensome transitions and regulations regarding third-party services and staffing. There were small associations found between regulations related to medication management (i.e., requiring regular medication reviews, permitting direct care workers for injections, requiring/not requiring licensed nursing staff for injections) and potentially burdensome transitions. Conclusions: In this cross-sectional study, the associations of RC/AL regulations with potentially burdensome transitions were either small or not statistically significant, calling for more studies to explain the wide variation observed in end-of-life outcomes among RC/AL residents.