Primary care providers may consider referring patients with cognitive impairment to clinicians specializing in memory care. We evaluated whether referrals are associated with quality-of-care and diagnostic outcomes, comparing estimates based on traditional and instrumental variable (IV) analyses. Analyses included individuals diagnosed with memory loss, mild cognitive impairment, or Alzheimer's disease and related dementias in a single healthcare system after 2005. Electronic health records were used to define referral to specialists and primary care provider preference (instrument) for referring. We modeled traditional and IV associations between referral to care and 14 patient-centered outcomes over 5 years of follow-up using adjusted Aalen additive hazards models. Overall, 1019 (15%) older adults were referred at diagnosis. Preference strongly predicted actual referral (F-statistic = 637). Referral was observationally associated with increased cumulative hazard of receiving a more specific cognitive diagnosis (hazard difference at year 5: 0.09 [95% CI, 0.04-0.15]) and depression (0.09 [95% CI, 0.01-0.18]). Using IV, referral was significantly associated with decreased hazard of International Classification of Diseases-defined weight loss (-0.35 [95% CI, -0.60 to -0.09]); other estimates were imprecise and consistent with possible benefits or harms. Given barriers in accessing specialty care, it is critical to further investigate how specialty care affects outcomes of individuals with living with cognitive impairment.

BACKGROUND:Distressing symptoms are common in the last year of life and contribute substantially to suffering for older adults and their families. While psychological resilience has been linked to better aging outcomes, its association with end-of-life symptom burden is not well characterized. METHODS:We conducted a retrospective cohort study using nationally representative data from the Health and Retirement Study (2006-2022). The cohort included 4466 decedents aged ≥ 50 years with next-of-kin-reported symptoms in the last year of life and psychological resilience assessed on average 2 years before death. Psychological resilience was measured using a validated 12-item scale and categorized into quartiles. Outcomes included 12 end-of-life symptoms grouped into physical, neuropsychiatric, and functional domains. The primary outcome was high symptom burden, defined as seven or more symptoms. Associations were estimated using survey-weighted Poisson regression with robust standard errors, adjusting for sociodemographic, clinical, and functional covariates. RESULTS:Decedents were on average 76 years old, 50% female, and 16% non-White. Resilience scores averaged 8.4 (SD, 1.91; median, 8.5). Higher resilience was associated with lower prevalence of end-of-life symptom burden. In adjusted models, high symptom burden was present in 31.1% (95% CI, 28.0-34.2) of those in the lowest resilience quartile and 19.6% (95% CI, 16.8-22.4) of those in the highest (P for trend < 0.001). Predicted probabilities demonstrated notable gradients of symptom prevalence across quartiles for depression (57.9% vs. 36.5%), severe fatigue (66.1% vs. 56.7%), incontinence (45.0% vs. 35.0%), and pain (56.1% vs. 47.4%). Associations were absent for symptoms such as appetite loss and vomiting. CONCLUSIONS:In this nationally representative cohort, high psychological resilience measured before death was associated with lower symptom burden across multiple domains in the last year of life. Resilience assessment may help identify individuals at risk for distressing end-of-life experiences and inform interventions to bolster late-life resilience.

BACKGROUND:Emotional and financial mistreatment among older adults is often under-recognized among clinicians. Exploring whether sensory impairment is linked to an elevated risk of elder financial or emotional mistreatment could help inform targeted screening strategies. METHODS:We used nationally-representative, cross-sectional data from the National Social Life, Health, and Aging Project, including interview rounds with available assessments of recent elder mistreatment (Round 1 (R1): 2005-06 and Round 4 (R4): 2021-23). Elder mistreatment included reported emotional mistreatment (being insulted or feeling controlled) and financial mistreatment (money or belongings taken without permission) within the last 12 months. Assessments of sensory impairment differed slightly by round of data collection and included self-reported overall vision, olfaction, and hearing, self-reported hearing loss that interferes with communication, and objective vision (visual acuity) and olfaction (sniff test). We used multivariable logistic regressions to determine the association of self-reported and objective individual and multi-sensory impairments with mistreatment risk. Analyses for multisensory impairment were conducted using the full sample, while analyses for individual impairments were stratified by round of data collection. RESULTS:The total sample included 5231 participants; R1 included 2461 participants who were on average 70 years old (SD 7) and 53% female, and R4 included 2770 participants who were on average 71 years old (SD 9) and 55% female. Multisensory impairment was linked to a higher adjusted probability of experiencing either emotional or financial mistreatment (0 impairments: 20% vs. 1 impairment: 23% vs. 2+ impairments: 28%, p < 0.01). Respondents with self-reported vision impairment had a higher adjusted probability of financial mistreatment (8% vs. 3%, p < 0.001) whereas objective vision impairment had no association. Self-reported hearing impairment that interfered with communication was associated with financial mistreatment (12% vs. 7%, p = 0.03). CONCLUSION:Integrating assessments for multisensory impairment, vision, and hearing loss may add to elder mistreatment prevention and detection efforts.

Context : Medicare’s Hospice Benefit was originally designed for cancer care, but now over half of hospice patients have dementia. To optimize hospice for people living with dementia (PLWD) and their caregivers, we must understand what hospice professionals view as the most important challenges and facilitators to caring for this population. Objective : To assess hospice professionals’ perspectives on hospice care for patients and families impacted by dementia. Methods : Semi-structured interviews with multidisciplinary hospice professionals in 3 hospice agencies in California. We used inductive and deductive thematic analysis; deductive analyses were grounded in the socioecological model. Results : 32 participants were included (9 nurses, 5 home health aides, 3 social workers, 3 chaplains, 2 NPs, 2 MDs, 9 leaders; 22% male, average age 45). Participants highlighted how challenges and facilitators spanned the socioecological domains, including hospice-specific issues as well as the broader context of the dementia experience. Challenges Individual-level: The prolonged decline of PLWD drained family’s physical, emotional, and financial resources. Community/policy-level: Patient and family needs were unmet by local facility capacity and the clinical course of PLWD was a poor fit with hospice eligibility criteria. Facilitators Individual-level: Clinicians' positive attitudes emphasizing dignity of PLWD informed expert communication intended to develop connection and trust. Community/policy-level: Care coordination across systems supported patients along the continuum of decline. Conclusion : Optimizing hospice for patients and families impacted by dementia requires addressing both hospice-specific practice and policy, as well as broader dementia care infrastructure.

OBJECTIVES:We previously developed a multi-outcome prognostic model for older adults admitted to skilled nursing facilities (SNFs) for short-term rehab using Medicare data. However, incorporating predictors from the Minimum Data Set (MDS), a mandated comprehensive assessment, may improve model performance. This study sought to develop an updated model with MDS elements for use on day 7 of SNF admission when clinical trajectories are more established. DESIGN:Retrospective cohort study. SETTING AND PARTICIPANTS:Twenty percent national sample of community-dwelling Medicare Fee-for-Service beneficiaries aged ≥66 admitted to an SNF for at least 7 days following a hospitalization between 2017 and 2019. METHODS:We predicted 2 outcomes: 6-month mortality and successful community discharge (community discharge without rehospitalization or death in the subsequent 30 days). For model development, we started with predictors from our published Medicare-based model (age, sex, Medicaid status, discharge diagnosis, hospital length of stay, admission type, comorbidities, prior hospitalizations), used Least Absolute Shrinkage and Selection Operator (LASSO) on MDS elements for variable selection, and performed logistic regression to determine predictor coefficients. Model performance was assessed by concordance statistics (c-statistics), calibration plots, and decision curve analysis. RESULTS:The cohort included 426,680 individuals [mean age 81.3 years (SD = 8.3), 62.7% female, 7.9% Black]. Overall, 19.9% died within 6 months, and 57.6% experienced a successful community discharge. The updated MDS model, which included Medicare predictors and 6 MDS items (activities of daily living score, cognitive status, urinary incontinence, bowel incontinence, oxygen use, walking balance), showed improvements over the Medicare model in discrimination [bootstrapped optimism-corrected c-statistic of 0.789 (95% CI, 0.787-0.790) vs 0.747 (95% CI, 0.745-0.749) for 6-month mortality and 0.730 (95% CI, 0.728-0.731) vs 0.685 (95% CI, 0.683-0.687) for successful community discharge, respectively], net benefit, and fraction of new information. Models showed good calibration. CONCLUSIONS AND IMPLICATIONS:Incorporating MDS data from the first 7 days of SNF admission improved the accuracy of predictions of 6-month mortality and successful community discharge.

PURPOSE:Both hearing loss and the experience of chronic illness become increasingly common across the lifespan. A major goal of palliative care and chronic illness management is to elicit care preferences, a process that should start early in the chronic illness trajectory. Hearing loss can disrupt this process, yet few data are available on the experience of older adults with hearing loss and a chronic illness within the healthcare system. This pilot study was designed to begin to address this gap in our understanding. METHODS:Using a qualitative, Constructivist, Grounded Theory framework, interviews were accomplished with fifteen older adults with hearing loss and chronic illness and with their partners. RESULTS:A key overarching story that emerged from the data was A Necessary Routine: Hearing Loss Self-Advocacy. The driving forces promoting self-advocacy were never being asked but wanting to know while influencing contextual factors were the setting of a small office, concurrent concerns, and no accommodations. The negative impact of not having hearing loss considered included fear of missing information and misunderstandings. CONCLUSIONS/IMPLICATIONS:Findings are discussed in the context of the demands imposed by the need to constantly self-advocate and how these findings underpin an argument for modifications in how hearing loss is managed within the health care system-modifications that will minimize the need for individuals to constantly self-advocate to have their hearing loss taken into consideration.

BACKGROUND:Loneliness (subjective feeling of lacking connection) and social isolation (objective deficit in number of relationships or contact with others) are common at the end-of-life and can be detrimental to quality of life. Investigating the association between symptoms and end-of-life loneliness and social isolation could help inform targeted interventions. METHODS:We used nationally-representative, cross-sectional Health and Retirement Study data, including adults > 50 years old (N = 2385) who died while enrolled. Respondents self-reported on validated loneliness and social isolation measures within 1 year of death; 12 physical and psychological symptoms were determined via after-death interviews with proxies. We use multivariable logistic regression to determine the adjusted probability of end-of-life loneliness or social isolation by each symptom, adjusting for socio-demographic covariates. RESULTS:Respondents were on average 76 years old, 50% female, 82% identified as White, 10% Black, and 5% Latino. Loneliness was more common among the following symptoms (p < 0.05): pain (30% vs. 20%), depression (35% vs. 18%), fatigue (29% vs. 22%), drowsiness (32% vs. 25%), and agitation (38% vs. 24%). Social isolation was more common in decedents who had difficulty breathing (22% vs. 14%, p = 0.03), drowsiness (30% vs. 17%, p = 0.006), and persistent cough (24% vs. 15%, p = 0.007). CONCLUSIONS:In the last year of life, multiple psychosocial symptoms were associated with experiences of loneliness whereas physical symptoms were associated more with social isolation. While these relationships are complex, addressing the social sequela of physical and psychological symptoms may be an opportunity to improve overall well-being at the end-of-life.

BACKGROUND:ICU patients frequently receive treatments clinicians perceive are futile which can cause conflict between clinicians, patients and families. Medical futility lacks a consensus definition, yet this ambiguous and contentious term is used in medical notes. RESEARCH QUESTION:What themes are associated with futility mentions in ICU notes? How have themes' frequencies changed over time? STUDY DESIGN/METHODS:Mixed methods study of ICU notes (e.g., H&P, progress notes) written by clinicians (e.g., physicians, nurses) for adult patients at a large hospital system from 2010 to 2020. Neural network models identified terms most associated with "futile" or "futility." Distributional semantic analysis grouped terms into themes. Regression modeling explored longitudinal changes in themes' frequencies. RESULTS:Across 2,460,169 notes for 9912 patients, the annual average count of unique notes with futility mentions was 137 per 100,000 and unchanged from 2010 to 2020. 8 themes were identified among terms most associated with the words "futile" or "futility." The most represented themes were Decision Making (annual average 18% [95% CI: 16%-19%]), Assessing, Prognosticating, and End-of-Life Outcomes (15%, 13%-16%), and Identifying Sentiments (13%, 10%-15%). Recording Code Status was the least represented theme in 2010 (4%) and increased over time (9% in 2020, P = 0.001). INTERPRETATION:Use of futility was rare and stable across a decade of ICU notes. Semantic analysis indicates clinicians use futility in heterogeneous contexts. Changes in themes' frequencies may reflect clinicians' evolving conceptions of medical futility. These findings could guide development of EHR-based interventions to address perceived futile treatments which contribute to clinicians' moral distress.

This cross-sectional study assesses receipt of opioids and daily morphine milligram equivalents among nursing home residents from 2011 to 2022.

BACKGROUND:Delirium is common in hospitalised older adults and is associated with mortality. Whether this prognostic association varies by baseline cognition is uncertain. We evaluated the association between delirium and 90-day mortality and whether baseline cognitive status modified this relationship. METHODS:We conducted a prospective, multicentre cohort study of adults aged ≥65 years admitted to 43 hospitals in five countries (Brazil, Angola, Chile, Colombia and Portugal; June 2022-December 2023). Delirium was assessed using the Confusion Assessment Method; cognitive status was measured using an informant-based Clinical Dementia Rating (CDR). Mortality within 90 days of admission was ascertained from hospital records, structured telephone follow-up by blinded assessors and registry linkage. We used mixed-effects survival models with random intercepts (state/province and study centre) and sequential adjustment for sociodemographic, clinical and hospital-related factors. Effect modification by CDR was examined with stratified analyses. RESULTS:Among 2556 patients (mean age 79 ± 9 years; 56% women), delirium occurred in 957 (37%). Delirium frequency rose with worsening cognition (CDR 0: 16%; CDR 0.5: 27%; CDR 1: 59%; CDR 2-3: 77%; P < .001). Delirium was associated with higher 90-day mortality (adjusted HR = 3.45; 95% CI = 2.83-4.20). The relative association with mortality was greatest in no dementia and attenuated in moderate-severe dementia. At 90 days, cumulative mortality was 54% with delirium vs. 15% without in CDR 0 (HR = 4.40; 95% CI = 3.15-6.16) and 36% vs. 17% in CDR 2-3 (HR = 2.22; 95% CI = 1.34-3.66). Patients with delirium also experienced more in-hospital complications (nosocomial infection, functional decline and prolonged stay). CONCLUSIONS:Although delirium was more frequent among patients with dementia, its relative association with 90-day mortality was strongest in those with no baseline dementia. The results provide a strong rationale for intervention trials to determine whether delirium prevention and management strategies can reduce mortality, particularly among patients without known dementia.

BACKGROUND:Recent work suggests age discrimination can increase the risk for chronic pain among older adults. This study's aim was to examine the prevalence of exposure to ageism and its impact on chronic pain. METHODS:A nationally representative sample of 2029 adults ≥ 65 years old was recruited from the AmeriSpeak Panel. Participants were asked about five experiences of ageism. Older adults with chronic pain (pain on most/nearly every day in the past 3 months) reported pain self-efficacy, barriers to treatment, and use of specific therapies. Exposure to ageism was examined as a function of chronic pain status. Adjusted logistic and linear regressions were used to test associations between exposure to ageism and pain self-efficacy, likelihood of endorsing barriers to care, and use of pain treatments. RESULTS:More than half of older adults reported at least one prior exposure to ageism. Older adults with (vs. without) chronic pain were more likely to report exposure to ageism (OR: 1.62; 95% CI: 1.28-2.06). Among older adults with chronic pain, exposure to ageism was associated with lower pain self-efficacy and more perceived barriers to care (all p < 0.05). Finally, more exposure to ageism was associated with lower odds of using tai chi (OR: 0.89; 0.79-0.99), massage (OR: 0.93; 95% CI: 0.87-0.99), and cannabis (OR: 0.87; 95% CI: 0.77-0.99), though these associations did not remain statistically significant after correction for multiple testing. CONCLUSIONS:Participants with chronic pain were more likely than those without to report exposure to ageism. Among older adults with chronic pain, greater exposure to ageism was associated with less confidence in one's ability to manage pain, more barriers to treatment, and lower odds of using certain therapies. These results suggest that exposure to ageism may represent a barrier to successful chronic pain management in older adults.

Importance Social participation is essential throughout life and is associated with decreased mortality and increased quality of life. It is unknown whether long-term care facility (LTCF) entry disrupts or facilitates it. Objectives To determine longitudinal trends in social participation before and after entry into nursing homes (NHs) and assisted living facilities (ALs) and to explore factors associated with participation. Design, Setting, and Participants This nationally representative longitudinal cohort study using prospectively collected annual data from the US National Health and Aging Trends Study from 2011 to 2019 included community-dwelling Medicare beneficiaries entering LTCFs. Interviews conducted 4 years before and 2 years after NH or AL entry (index date) were included. Data analysis was performed from September 16, 2022, to May 25, 2025. Main Outcomes and Measures Two categories of social participation comprising 5 activities were assessed: socialization (visiting with friends or family and going out for enjoyment) and community participation (attending religious services, participating in clubs or other organized activities, and volunteering). Participation over time was modeled using linear splines before, upon, and after LTCF entry. Modified Poisson regressions were used to explore associations with maintaining and starting activities, adjusted for age, sex, race and ethnicity, and proxy response were used. Results The total sample included 606 LTCF entrants (weighted mean [SD] age 85 [7.4] years, 404 female [66% weighted]), of whom 104 individuals were Black (7%), 23 Hispanic (4%), 464 White (86%); and 15 of any other race and ethnicity (3%). Before entry, social participation decreased in all activities (-4.7 to -2.0% annually). Of the total, 275 (44%) entered a NH and 331 (56%) entered an AL facility. Upon entry, going out for enjoyment decreased (-14.1%), but club participation and religious attendance increased (15.6% and 12.6%, respectively). Before LTCF entry, social participation decreased in all activities (-4.7 to -2.0% annually). After entry, going out for enjoyment decreased (-14.1%), but club participation and religious attendance (12.6%) increased (15.6% and 12.6%, respectively). In exploratory analyses, women were more likely to maintain visits (adjust risk ratio [aRR], 1.3; 95% CI, 1.1-1.5) and start attending religious services (aRR, 1.6; 95% CI, 1.0-2.8). NH residents were less likely to go out for enjoyment (aRR, 0.6; 95% CI, 0.5-0.8 for maintaining; aRR, 0.6; 95% CI, 0.4-1.0 for starting) and keep attending religious services (aRR, 0.7; 95% CI, 0.6-0.9). Black, Hispanic, and residents of other race or ethnicity were much less likely to start going out for enjoyment (aRR, 0.3; 95% CI, 0.1-0.8). Conclusions and Relevance This cohort study found that LTCF entry generally promoted community participation and reduced socialization. Benefits may be less likely among men, NH entrants, and residents of racial and ethnic minority groups.

In the United States, spouses provide 17% of in-home care for people living with dementia. Negative impacts of dementia care on spouses/partners are well-documented, but we lack information about the holistic experience for spouses/partners. We conducted a secondary thematic analysis of data from two observational studies about everyday music engagement and dementia care at home. In this paper, we report on experiences of dementia care from the perspectives of spouses/partners. Participants included 15 people living with dementia (20% women, 20% people of color); 15 spouses/partners (73% women, 27% people of color). Individual experiences varied, but underlying patterns emerged: 1) Caregiving approaches were grounded in loyalty and commitment 2) Spouses/partners struggled to accept changes occurring with dementia progression, and 3) As verbal skills diminished, spouses/partners found meaning in small gestures. Spousal/partner dementia care poses unique challenges and rewards. Identifying underlying motivations and sources of strength can support the caregiving experience.

Rationale: The US prison population carries a high burden of chronic disease and disability, with older adults constituting the fastest growing subpopulation. When medical needs exceed a prison's healthcare service capabilities, incarcerated patients are transported to clinics and hospitals in surrounding communities. The influence of prison policies on off-site medical care of incarcerated patients is poorly understood. This study aims to identify and classify correctional policies regulating the care of incarcerated patients in community hospitals. Methods: Between 6/2024-10/2024 we searched the Internet for policies from states’ Departments of Corrections (DOC) pertaining to healthcare of incarcerated patients. We compiled, reconciled and organized those policies according to date, jurisdiction and relevance to hospital care. We then developed a preliminary thematic coding scheme and, using mixed inductive and deductive content analysis, two coders independently applied our codebook to each policy. Any coding discrepancies were resolved by consensus, and when necessary, with adjudication by a third team member. Results: Forty-eight state DOCs and the District of Columbia (totaling 49 “states”) have publicly available policies pertaining to healthcare. Among these, 20/49 (41%) have policies pertaining to the protection of bodily privacy during healthcare encounters. Separately, 31 (63%) have policies regarding the confidentiality of incarcerated patients’ medical encounters and records. Thirty-four (69%) maintain policies regarding incarcerated individuals’ right to select and consent to treatment. Thirty-three (67%) include language about the right to refuse treatment. Twenty-six states (53%) direct that incarcerated individuals be informed of their right to access healthcare either in writing (22/49; 45%), verbally (20/49; 41%), or through posted signage (5/49; 10%). Twenty-one states (43%) address shackling during off-site medical care, but only 15 (31%) address responding to requests from off-site clinicians to minimize or remove patients’ restraints. Just 4/49 states (8%) use person-centered language (avoiding terms like “offender” and “inmate”). Policy excerpts addressing key domains are depicted in the Table. Conclusions: Correctional policies regarding the care of incarcerated patients in community hospitals vary significantly in scope and content across states. While incarcerated people have a Constitutionally protected right to accept or refuse healthcare, including making their own treatment decisions, many state policies do not explicitly mandate how these disclosures must be communicated to patients or their healthcare providers. These silences, when combined with security measures like shackling and the ubiquitous presence of officers, countermand person-centered care and undermine the ability of hospital healthcare professionals to uphold the rights and dignity of incarcerated patients.

Rationale: Physical limb restraints are commonly used in intensive care units (ICUs) to protect patients and staff but are associated with increased morbidity and disparities in care, particularly in intubated patients. Whether disparities in restraint use persist for nonintubated patients remains less clear. Objectives: We sought to identify whether patient race, ethnicity, and preferred language are associated with restraint use in nonintubated patients across multiple ICUs in a large U.S. hospital system. Methods: We performed a retrospective cohort study using electronic health record data across five ICUs within the University of California, San Francisco, from 2013 to 2022. We included adults who were 18 years of age and older. We excluded patients who received mechanical ventilation during their ICU stay. Our primary independent variables were primary language, race, and ethnicity. The outcome of interest was restraint use, defined as at least one restraint order placed during the patient's ICU stay. We modeled any restraint use using a multivariable logistic regression adjusted for sociodemographic and clinical covariates and explored interactions of our primary exposures using sensitivity analyses and Wald testing. Results: Across 22,259 unique ICU admissions, we identified 11,676 nonintubated patients. Of these, 2,411 (20%) received an order for physical restraints. In a multivariable regression model, compared with English, Chinese (all dialects) (odds ratio [OR], 1.57; 95% confidence interval [CI], 1.31-1.87) and a language other than Chinese, English, or Spanish (OR, 1.60; 95% CI, 1.36-1.89) were associated with increased use of restraints. Patients identifying as Black or African American were also more likely to be restrained at least once during the encounter (OR, 1.51; 95% CI, 1.27-1.79) compared with non-Hispanic White patients. Conclusions: Patients preferring Chinese or any language other than English or Spanish and those who identify as Black are more likely to be restrained in the ICU when not intubated. Interventions to minimize the use of unnecessary physical restraints could improve an inequity known to be associated with downstream harms.

ABSTRACT Background One in three older adults in the United States dies with or from dementia. Little is known about whether end‐of‐life caregiving experiences differ by dementia diagnosis. Methods We conducted a secondary analysis of two qualitative studies. Participants included caregivers of decedents with “rapid‐type” sporadic Creutzfeldt–Jakob Disease (sCJD, survival prognosis of < 1 year) or “slow‐type” Alzheimer's disease and related dementias (survival prognosis of 5–20 years). We used reflexive thematic analysis and a novel method, poetic analysis, to compare end‐of‐life caregiving experiences. Results “Rapid‐type” caregivers ( n = 12) had a median age of 59 (range 45–73) years; 6 were female, and 9 were spouses. “Slow‐type” caregivers ( n = 15) had a median age of 69 (45–82) years; 9 were female, and 11 were spouses. We identified three main areas of differential experience that were influenced by syndrome rarity and participation in research yet hinged on time . Time enables preparation : Due to the rarity of sCJD, “rapid‐type” caregivers struggled to obtain accurate diagnoses, which prevented preparation for end‐of‐life care. Weeks or months before death, specialists simultaneously disclosed sCJD diagnoses and recommended hospice. In contrast, for “slow‐type” dementia, preparation began years before death. Time complicates conflict : Most “rapid‐type” caregivers described conflicts , rarely resolved before death, about code status, treatment, or care location decisions. Fewer “slow‐type” caregivers experienced such conflicts, and these were typically resolved before death; instead, they experienced conflict between needs and what the care system provides. Postmortem experience contrasts with perimortem : For “rapid‐type” dementia, short perimortem periods contrasted with elongated and often intense postmortem logistics and grief. For “slow‐type” caregivers, preparation and perimortem grieving typically led to shorter duration and minimally intrusive postmortem logistics and grief. Conclusions End‐of‐life care for dementia should attend to and support axes of differential experience based on diagnosis and rarity, time since symptom onset (affecting preparation and conflict resolution), and participation in research studies.

RATIONALE:Functional disability, cognitive dysfunction, and mental health impairments are common sequela of critical illness. Socially isolated older Americans have increased mortality compared to their peers and experience more functional disability after discharge from an ICU stay. Loneliness, a related but distinct concept from social isolation, is associated with cognitive impairment and functional decline in older patients, but whether loneliness predicts functional disability in ICU survivors remains unknown. METHODS:We retrospectively analyzed data from the Health and Retirement Study (HRS), a longitudinal prospective cohort of more than 20,000 community-dwelling older Americans. Data were modeled for the 5 years preceding and 5 years following an ICU stay. We included adults Age>65 that survived an ICU stay and had completed a psychosocial questionnaire (“Leave Behind Questionnaire”) prior to the ICU. Loneliness was measured using a 3-item loneliness scale, and respondents were separated into three categories: Not Lonely (Score 0-3), Occasionally Lonely (4-6), and Often Lonely (7-9). The primary outcome was probability of functional independence, which was modeled via logistic regression for the 5 years preceding and following the ICU stay. We used a cox regression inverse probability weight for survival, as well as survey weighting. RESULTS: A total of 2,839 ICU survivors met our inclusion criteria and were included for analysis. Respondents in the “Often Lonely” category were more likely to be Male (61%), Nonwhite (28%), or identify as Hispanic or Latino (10.6%). Median wealth also decreased across loneliness categories, with “Not Lonely” respondents having the highest median wealth. “Often Lonely” respondents had high rates of comorbid illnesses (21.6%) and were more likely to have a prescription for Anxiety or Depression (32.2%). In our main unadjusted model, probability of independence (Pi) declined for all respondents over 10 years. “Often Lonely” respondents had lower baseline Pi, lower Pi immediately preceding ICU admission, the lowest post-ICU Pi and lowest Pi at 5 years following their ICU stay. For patients in the “Often Lonely” group, Pi decreased from >85% pre-ICU to <25% 5 years post-ICU. CONCLUSIONS Loneliness is associated with significant post-ICU functional decline. Determination of whether this finding is confounded by sociodemographic and clinical characteristics requires further modeling, which is ongoing. Loneliness may be an independent predictor of functional decline in older ICU survivors.

Rationale: Critical care societies have sought to restrict futility to describe interventions that cannot achieve their intended physiologic goal. Nevertheless, in real world clinical settings futility carries ambiguous connotations. We seek to explore how clinicians describe and conceptualize futile care in the electronic health record (EHR), and how these concepts evolve over time. Methods: We conducted a retrospective cohort analysis of notes from patients >=18 years admitted to any of 5 intensive care units (ICU) across the University of California, San Francisco (UCSF) from 2010-2020. The use of “futile” and “futility” were measured across ICU notes for each year. We then trained unsupervised neural network models on yearly ICU notes and identified the 100 terms most likely to co-occur with “futile” and “futility” which were then combined (200 terms/year). The research team conducted a reflexive thematic analysis using a constant comparative method to inductively generate and refine themes iteratively across serial meetings. Co-occurring terms were subsequently categorized by theme and themes were modeled over time using a multinomial logistic regression. Results: Annual counts of the words futile and futility were unchanged from 2010-2020 (yearly average 16/100,000 notes). We identified five themes among the words strongly associated with “futile” and “futility": 1) Diseases and Treatments (e.g., multi-vessel PCI, ulcerative colitis, artificial nutrition); 2) Shared Decision-making and Relationships (e.g., decision maker, prioritize, unhappy); 3) Code Status and Goals of Care (e.g., DNR, comfort, heroic measures); 4) Assessing and Prognosticating (e.g., beneficial, grave, incurable); and 5) Other (e.g., United healthcare, bandwidth, easiest). Predicted counts of co-occurring terms differed between themes and changed from 2010-2020 (Figure 1). The theme Code Status and Goals of Care increased (slope 0.012, p-value 0.005), whereas Diseases and Treatments (-0.004, 0.07) and Other (-0.008, 0.004) decreased during this time period. The themes Shared Decision-making and Relationships (-0.003, 0.50) and Assessing and Prognosticating (0.003, 0.50) were unchanged. Conclusions: Combining qualitative methods with artificial intelligence, we describe themes related to medical futility in ICU notes. While medical societies recommend a restricted definition of medical futility, our results suggest that clinicians use the term in more heterogeneous contexts. These findings could be used to study and develop interventions to address potentially inappropriate care, an important contributor to moral distress for ICU clinicians.