Sleep quality differences among caregivers for persons living with and without dementia.

OBJECTIVES: This study examined the relationship between caring for a person with/without dementia and caregiver sleep quality, and analyzed the extent to which perceived benefits of caregiving and assessments of caregiver-recipient relationship quality explain the relationship between care recipient dementia status and caregiver sleep quality. METHOD: Data were analyzed from caregivers for persons with no or probable dementia who participated in the 2017 National Study of Caregiving (NSOC) and National Health and Aging Trends Study. Caregiver sleep quality was measured using NSOC time diary interview. Perceptions of caregiving and relationship quality were assessed using 4-item surveys. We used multivariable logistic regressions to examine the association between care recipient dementia status and caregiver sleep quality controlling for covariates. RESULTS: The sample consisted of 1,374 caregivers (mean age = 62.3, SD = 14, 68.3% women, 69.4% non-Hispanic White). In multivariable models adjusting for caregiver and care recipient characteristics, being a caregiver for someone with dementia was associated with 23% lower odds of reporting "excellent/very good" sleep quality (OR: 0.77, 95%CI: 0.61-0.98, p = 0.032). Greater perception of caregiving benefits was associated with 8% greater odds of "excellent/very good" sleep quality (AOR: 1.08, 95%CI: 1.02-1.15, p = 0.013), but did not explain the relationship between dementia and caregiver sleep quality. Positive ratings of relationship quality explained the relationship between care recipient dementia status and caregiver sleep quality (AOR: 0.82, 95%CI: 0.65-1.05, p = 0.12). CONCLUSION: Improving assessments of relationship quality and amplifying perceptions of caregiving benefits may reduce disparities in sleep quality between caregivers of persons living with or without dementia.

Hospice Readmission, Hospitalization, and Hospital Death Among Patients Discharged Alive from Hospice.

Importance: Transitions in care settings following live discharge from hospice care are burdensome for patients and families. Factors contributing to risk of burdensome transitions following hospice discharge are understudied. Objective: To identify factors associated with 2 burdensome transitions following hospice live discharge, as defined by the Centers for Medicare & Medicaid Services. Design, Setting, and Participants: This population-based retrospective cohort study included a 20% random sample of Medicare fee-for-service beneficiaries using 2014 to 2019 Medicare claims data. Data were analyzed from April 22, 2023, to March 4, 2024. Exposure: Live hospice discharge. Main Outcomes and Measures: Multivariable logistic regression examined associations among patient, health care provision, and organizational characteristics with 2 burdensome transitions after live hospice discharge (outcomes): type 1, hospice discharge, hospitalization within 2 days, and hospice readmission within 2 days; and type 2, hospice discharge, hospitalization within 2 days, and hospital death. Results: This study included 115 072 Medicare beneficiaries discharged alive from hospice (mean [SD] age, 84.4 [6.6] years; 71892 [62.5%] female; 5462 [4.8%] Hispanic, 9822 [8.5%] non-Hispanic Black, and 96 115 [83.5%] non-Hispanic White). Overall, 10 381 individuals (9.0%) experienced a type 1 burdensome transition and 3144 individuals (2.7%) experienced a type 2 burdensome transition. In adjusted models, factors associated with higher odds of burdensome transitions included identifying as non-Hispanic Black (type 1: adjusted odds ratio [aOR], 1.47; 95% CI, 1.36-1.58; type 2: aOR, 1.70; 95% CI, 1.51-1.90), hospice stays of 7 days or fewer (type 1: aOR, 1.13; 95% CI, 1.06-1.21; type 2: aOR, 1.71; 95% CI, 1.53-1.90), and care from a for-profit hospice (type 1: aOR, 1.78; 95% CI, 1.62-1.96; type 2: aOR, 1.32; 95% CI, 1.15-1.52). Nursing home residence (type 1: aOR, 0.66; 95% CI, 0.61-0.72; type 2: aOR, 0.47; 95% CI, 0.40-0.54) and hospice stays of 180 days or longer (type 1: aOR, 0.63; 95% CI, 0.59-0.68; type 2: aOR, 0.60; 95% CI, 0.52-0.69) were associated with lower odds of burdensome transitions. Conclusion and Relevance: This retrospective cohort study of burdensome transitions following live hospice discharge found that non-Hispanic Black race, short hospice stays, and care from for-profit hospices were associated with higher odds of experiencing a burdensome transition. These findings suggest that changes to clinical practice and policy may reduce the risk of burdensome transitions, such as hospice discharge planning that is incentivized, systematically applied, and tailored to needs of patients at greater risk for burdensome transitions.

Race and Ethnicity Are Related to Undesirable Home Health Care Outcomes in Seriously Ill Older Adults.

OBJECTIVES: Medicare Home Health Care (HHC) services are integral to the care of homebound seriously ill older adults requiring ongoing specialized medical care. Although disparities in health outcomes are well documented in inpatient and primary care, disparities experienced by historically marginalized racial and ethnic groups underrepresented in HHC are understudied. This study aimed to examine the relationship between individual characteristics and differences in HHC health outcomes for seriously ill older adults. DESIGN: Secondary data analysis, repeated measure. SETTING AND PARTICIPANTS: Seriously ill older adults who received HHC in 2016 in the HHC Outcome and Assessment Information Set (OASIS). METHODS: Start of care and discharge data from the 2016 HCC OASIS were used to examine the relationship between individual characteristics and differences in HHC health outcomes identified by the Centers for Medicare and Medicaid Services as key indicators of quality in HHC, including dyspnea, pain frequency, cognitive functioning, and presence of unhealed pressure ulcer stage II or higher. A generalized ordered logit model with partial proportional odds was used for the ordinal categorical outcomes and a logistic regression was used for the binary dependent variable. RESULTS: Findings indicated that of 227,402 seriously ill individuals with an HHC episode in 2016, those from underrepresented racial and ethnic groups had between 14% and 57% higher odds of worse health outcomes compared with non-Hispanic white patients with the exception of pain frequency. CONCLUSIONS AND IMPLICATIONS: For people living with serious illness, there are significant differences in Medicare HHC health outcomes when comparing underrepresented racial or ethnic beneficiaries with white counterparts. More research is needed to understand how health care processes such as referral patterns or time to care initiation, and structural factors such as HHC agency quality and neighborhood social deprivation are related to health differences observed in the population.

Knowledge Gaps in End-Of-Life Family Caregiving for Persons Living With Dementia: A Study of Hospice Clinician Perspectives.

INTRODUCTION: More than 35% of hospice care recipients 65 and older have a dementia diagnosis. Yet family care partners of persons living with dementia report feeling unprepared to address their hospice recipient's changing needs nearing end of life. Hospice clinicians may have unique insight into the knowledge needs of family care partners and strategies for end-of-life dementia caregiving. METHODS: Semi-structured interviews were conducted with 18 hospice physicians, nurse practitioners, nurses, and social workers. Interview transcripts were deductively analyzed using thematic analysis to examine clinicians' perspectives on gaps and strategies related to family care partner knowledge about end-of-life dementia caregiving. RESULTS: We identified 3 themes related to gaps in family care partners' knowledge: dementia is a progressive, fatal disease; end-of-life symptoms and symptom management in persons living with advanced dementia; and understanding hospice goals and guidelines. Three themes related to clinicians' strategies to increase knowledge included: providing education; teaching strategies to facilitate coping and preparedness for end-of-life care; and communicating with empathy. DISCUSSION: Clinicians perceive gaps in knowledge specific to dementia and end of life among family care partners. These gaps include a lack of understanding of Alzheimer's symptom progression and strategies to manage common symptoms. Recommendations for approaches to reduce knowledge gaps include providing education and strategies delivered with empathy toward the family care partner experience. CONCLUSION: Clinicians who work with persons living with dementia receiving hospice care have valuable insights regarding family care partners' gaps in knowledge. Implications on the training and preparation of hospice clinicians working with this care partner population are discussed.

Different Interpretations of "Honor Your Parents": Implications for Obligation of Parental Caregiving.

OBJECTIVES: Many religious and cultural settings embrace the principle to "honor your parents." However, how individuals understand and enact this mandate varies by cultural context and community. The different understanding of "honor your parents" draws attention to motivations for parental caregiving across cultural contexts. This study investigates how individuals in 3 different cultural settings conceptualize "honoring your parents" and how these conceptualizations affect their perceptions of obligations to care for an older parent. METHODS: Semistructured interviews with 153 individuals in the United States, Ghana, and Nigeria explored the concept of "honor your parents," how it is understood, and its relationship to the perceived obligation to care for one's parents. A content analysis was applied to all transcripts and analyzed for discussion. RESULTS: Among individuals in the United States, "honor your parents" is less likely to be conceived as providing material and instrumental care to a parent, and more in terms of emotional care. In contrast, individuals in Nigeria and Ghana closely associated "honor your parents" with providing material and instrumental care to a parent. DISCUSSION: Understanding how different conceptions of "honor your parents" translate to expectations for and modes of parental caregiving can illuminate how caregiving needs can be met for the aging populations of the United States, Ghana, and Nigeria.

Challenges and strategies among family care partners of community-dwelling persons with dementia nearing end of life.

BACKGROUND: A growing number of persons living with dementia (PLwD) die at home with hospice care. However, there is limited information describing the needs of dying, community-dwelling persons with dementia and their family care partners (FCPs). Understanding the range of challenges faced by these FCPs is requisite to developing resources and refining support infrastructure. The current study identifies caregiving challenges unique to this population and strategies FCPs use to address those challenges. METHODS: Semi-structured interviews were conducted with 40 current or recently bereaved FCPs of home hospice patients living with dementia, recruited from geriatrics clinics and a hospice agency in the New York metropolitan area. A thematic analysis guided by deductive and inductive approaches was used to code interview transcripts, identify broader conceptual categories, and search for themes. RESULTS: Three themes were identified related to challenges faced by FCPs: (1) managing emotions and reacting to behaviors associated with advanced dementia; (2) lack of knowledge and adequate information related to dementia: disease progression and caregiving skills; and (3) maintaining FCP well-being: self-care and caregiver burden. Three themes were identified that describe strategies FCPs of PLwD employ to cope with end-of-life caregiving demands: (1) accepting help from professional caregivers and hospice support services; (2) getting knowledge and information about dementia; and (3) pragmatic approaches and acceptance of signs and symptoms of disease progression. CONCLUSIONS: FCPs of PLwD near the end of life (EOL) face caregiving challenges unique to dementia and dying. While FCPs are resourceful in identifying novel strategies for managing burden and caregiving responsibilities, our results point to gaps in the current support infrastructure for this population at the EOL. Findings also identify areas of need for care partners navigating end-of-life issues.

Potential sources of moral distress during COVID-19: Perspectives of hospice interdisciplinary teams.

OBJECTIVE: This study aimed to examine the impact of COVID-19 on hospice Interdisciplinary team (IDT) members' self-reported stress and identify possible sources of moral distress. METHODS: A cross-sectional survey was conducted using Qualtrics to understand the impact of COVID-19 on quality improvement initiative implementation and hospice IDT members' general and dementia-specific care provision. Directed qualitative content analysis was used to analyze hospice IDT members' responses from five open-ended survey questions that were indicative of stress and possible moral distress. RESULTS: The final sample consisted of 101 unique respondents and 175 comments analyzed. Three categories related to sources of moral distress based on hospice IDT member survey responses were identified: (1) impact of telehealth, personal protective equipment (PPE), and visit restrictions on relationships; (2) lack of COVID-19-specific skills; and (3) organizational climate. Sources of moral distress were categorized in 40% of all responses analyzed. SIGNIFICANCE OF RESULTS: This study is one of the first to document and confirm evidence of potential stress and moral distress amongst hospice IDT members during COVID-19. It is imperative given the possible negative impact on patient care and clinician well-being, that future research and interventions incorporate mechanisms to support clinicians' emotional and ethical attunement and support organizations to actively engage in practices that address clinician moral distress resulting from restrictive environments, such as the one necessitated by COVID-19.

Socioeconomic Status, Race/Ethnicity, and Unexpected Variation in Dementia Classification in Longitudinal Survey Data.

OBJECTIVES: As dementia affects a growing number of older adults, it is important to understand its detection and progression. We identified patterns in dementia classification over time using a longitudinal, nationally representative sample of older adults. We examined the relationship between socioeconomic status and race/ethnicity, and patterns in dementia classification. METHODS: Data for 7,218 Medicare beneficiaries from the 2011-2017 National Health and Aging Trends Study (NHATS) were classified into five categories: consistently no dementia, consistently cognitive impairment, "typical" dementia progression, "expected" variation, and "unexpected" variation. Multivariable multinomial logistic regression assessed relative risk of dementia classification by sociodemographic and health factors. RESULTS: Among NHATS respondents, 59.5% consistently were recorded as having no dementia, 7% consistently cognitively impaired, 13% as having typical progression, 15% as having expected variation, and 5.5% as having unexpected variation. In multivariable models, compared with consistent dementia classification, less education, Medicare-Medicaid-dual enrollment, and identifying as non-Hispanic Black were associated with increased likelihood of unexpected variation (e.g., non-Hispanic Black adjusted risk ratio: 2.12, 95% CI: 1.61-2.78, p < .0001). DISCUSSION: A significant minority of individuals have unexpected patterns of dementia classification over time, particularly individuals with low socioeconomic status and identifying as non-Hispanic Black. Dementia classification uncertainty may make it challenging to activate resources (e.g., health care, caregiving) for effective disease management, underscoring the need to support persons from at-risk groups and to carefully evaluate cognitive assessment tools to ensure they are equally reliable across groups to avoid magnifying disparities.

Associations between dementia diagnosis and end-of-life care utilization.

BACKGROUND: Dementia is a leading cause of death for older adults and is more common among persons from racial/ethnic minoritized groups, who also tend to experience more intensive end-of-life care. This retrospective cohort study compared end-of-life care in persons with and without dementia and identified dementia's moderating effects on the relationship between race/ethnicity and end-of-life care. METHODS: Administrative claims data for 463,590 Medicare fee-for-service decedents from 2016 to 2018 were analyzed. Multivariable logistic and linear regression analyses examined the association of dementia with 5 intensive and 2 quality of life-focused measures. Intensity measures included hospital admission, ICU admission, receipt of any of 5 intensive procedures (CPR, mechanical ventilation, intubation, dialysis initiation, and feeding tube insertion), hospital death, and Medicare expenditures (last 30 days of life). Quality of life measures included timely hospice care (>3 days before death) and days at home (last 6 months of life). Models were adjusted for demographic and clinical factors. RESULTS: 54% of Medicare decedents were female, 85% non-Hispanic White, 8% non-Hispanic Black, and 4% Hispanic. Overall, 51% had a dementia diagnosis claim. In adjusted models, decedents with dementia had 16%-29% lower odds of receiving intensive services (AOR hospital death: 0.71, 95% CI: 0.70-0.72; AOR hospital admission: 0.84, 95% CI: 0.83-0.86). Patients with dementia had 45% higher odds of receiving timely hospice (AOR: 1.45, 95% CI: 1.42-1.47), but spent 0.74 fewer days at home (adjusted mean: -0.74, 95% CI: (-0.98)-(-0.49)). Compared to non-Hispanic White individuals, persons from racial/ethnic minoritized groups were more likely to receive intensive services. This effect was more pronounced among persons with dementia. CONCLUSIONS: Although overall dementia was associated with fewer intensive services near death, beneficiaries from racial/ethnic groups minoritized with dementia experienced more intensive service use. Particular attention is needed to ensure care aligns with the needs and preferences of persons with dementia and from racial/ethnic minoritized groups.

Associations of Intellectual Disability with Cardiopulmonary Resuscitation and Endotracheal Intubation at End of Life.

Background: Little is known about end-of-life intensive care provided to patients with intellectual disabilities (ID). Objectives: To identify differences in receipt of end-of-life cardiopulmonary resuscitation (CPR) and endotracheal intubation among adult patients with and without ID and examine whether do-not-resuscitate orders (DNRs) mediate associations between ID and CPR. Design: Exploratory matched cohort study using medical records of inpatient decedents treated between 2012 and 2018. Results: Patients with ID (n = 37) more frequently received CPR (37.8% vs. 21.6%) and intubation (78.4% vs. 47.8%) than patients without ID (n = 74). In multivariable models, ID was associated with receiving CPR (relative risk [RR] = 2.92, 95% confidence interval = 1.26-6.78, p = 0.012), but not intubation. Patients with ID less frequently had a DNR placed (67.6% vs. 91.9%), mediating associations between ID and CPR. Conclusions: In this pilot study, ID was associated with increased likelihood of receiving end-of-life CPR, likely due to lower utilization of DNRs among patients with ID. Further research is needed to confirm these results.

Hospice Composition Based on Diagnosis is Associated with Caregiver-Reported Quality Measures.

Context: Given that the composition of hospice patients' terminal diagnoses has become increasingly diverse, understanding whether hospices provide quality care to patients, regardless of disease, is important. However, data comparing diagnosis and caregiver-reported outcomes remain scarce. Objectives: To analyze the association between the composition of patients' terminal diagnoses and caregiver-reported quality measures. Methods: Using cross-sectional, publicly available data from the Centers for Medicare & Medicare Services (CMS), we analyzed data collected from 2015-2019. We conducted general linear model analyses to identify associations between hospice characteristics/practices and caregiver-reported outcomes. Results: Of the 2810 hospices, those that cared for a greater percentage of dementia patients had fewer caregivers, on average, who rated hospice a 9 or 10 (where 0 = low, 10 = high; ß = -.094; 95% CI = -.147, -.038), reported they always received help for pain and symptoms (ß = -.106, CI = -.156, -.056), and reported definitely having received the training they needed (ß = -.151, CI = -.207, -.095). Those caring for more stroke patients had fewer caregivers, on average, who rated hospice a 9 or 10 (ß = -.184, CI = .252, -.115), reported they always received help for pain and symptoms (ß = -.188, CI = -.251, -.126), reported definitely having received the training they needed (ß = -.254, CI = -.324, -.184), and reported that the hospice offered the right amount of emotional/spiritual support (ß = -.056, CI = -.093, -.019). Conclusion: Hospices that cared for a greater proportion of dementia and stroke patients had poorer scores on caregiver-reported quality measures. These findings support efforts to identify mechanisms underlying these differences and to design strategies to ensure optimal outcomes for hospice patients regardless of diagnosis.

Hospice interventions for persons living with dementia, family members and clinicians: A systematic review.

BACKGROUND: Hospice care was initially designed for seriously ill individuals with cancer. Thus, the model and clinicians were geared toward caring for this population. Despite the proportion of persons living with dementia (PLWD) receiving hospice care substantially increased over the past 10 years, and their longer lengths of stay, established hospice interventions for this population are scarce. No systematic review has previously evaluated those interventions that do exist. We synthesized hospice intervention studies for PLWD, their families, and hospice professionals by describing the types of interventions, participants, outcomes, and results; assessing study quality; and identifying promising intervention strategies. METHODS: A systematic review was conducted using a comprehensive search of five databases through March 2021 and follow-up hand searches. Included studies were peer-reviewed, available in English, and focused on hospice interventions for persons with dementia, and/or care partners, and clinicians. Using pre-determined inclusion and exclusion criteria, data was extracted guided by the Cochrane Checklist, and quality was assessed using a 26-item Consolidated Standards of Reporting Trials (CONSORT) Checklist. RESULTS: The search identified 3235 unique studies in total, of which 10 studies met inclusion criteria. The search revealed three types of interventions: clinical education and training, usual care plus care add-on services, and "other" delivered to 707 participants (mostly clinicians). Five studies included underrepresented racial and ethnic groups. Outcomes measured knowledge and skills, psychosocial and health outcomes, feasibility, and acceptability, with significant improvements in six studies. Study quality was reflective of early-stage research with clinical education and training strategies showing deliberate progression towards real-world efficacy testing. IMPLICATIONS: Hospice interventions for PLWD are sparse and in early-phase research. More research is needed with rigorous designs, diverse samples, and outcomes considering the concordance of care.

Practice Billing for Medicare Advance Care Planning Across the USA.

BACKGROUND: Medicare introduced billing codes in 2016 to encourage clinicians to engage in advance care planning (ACP) and promote goal-concordantend-of-life care, but uptake has been modest. While prior research examined individual-level factors in ACP billing, organization-level factors associated with physician practices billing for ACP remain unknown. OBJECTIVE: Examine the role of practices in ACP billing. DESIGN: Retrospective cohort study analyzing 2016-2018 national Medicare data. PARTICIPANTS: A total of 53,926 practices with at least 10 attributed Medicare beneficiaries. MAIN MEASURES: Outcomes were practice-level ACP billing (any use by the practice) and ACP use rate by practice-attributed beneficiaries. Practice characteristics were number of beneficiaries attributed to the practice; percentage of beneficiaries by race, Medicare-Medicaid dual enrollment, sex, and age; practice size; and specialty mix. KEY RESULTS: Fifteen percent of practices billed for ACP. In adjusted models, we found higher odds of ACP billing and higher ACP use rates among practices with more primary care physicians (billing AOR: 10.01, 95%CI: 8.81-11.38 for practices with 75-100% (vs 0) primary care physicians), and those serving more Medicare beneficiaries (billing AOR: 4.55, 95%CI 4.08-5.08 for practices with highest (vs lowest) quintile of beneficiaries), and larger shares of female beneficiaries (billing AOR: 3.06, 95% CI 2.01-4.67 for 75-100% (vs <25%) female ). CONCLUSIONS: Several years after Medicare introduced ACP reimbursements for physicians, relatively few practices bill for ACP. ACP billing was more likely in large practices with a greater percentage of primary care physicians. To increase ACP billing uptake, policymakers and health system leaders might target interventions to larger practices where a small number of physicians already bill for ACP and to specialty practices that serve as the primary source of care for seriously ill patients.

Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors.

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants' responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient's terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient's needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs' expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

Advance Care Planning, Palliative Care, and End-of-life Care Interventions for Racial and Ethnic Underrepresented Groups: A Systematic Review.

CONTEXT: Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care. OBJECTIVES: To summarize and evaluate existing palliative and end-of-life care interventions that aim to improve outcomes for racial and ethnic underrepresented populations in the United States. METHODS: We conducted a systematic review of the literature in the English language from four databases through January 2020. Peer-reviewed studies that implemented interventions on palliative care, advance care planning, or end-of-life care were considered eligible. Data were extracted from 16 articles using pre-specified inclusion and exclusion criteria. Quality was appraised using the modified Downs and Black tool for assessing risk of bias in quantitative studies. RESULTS: Five studies were randomized controlled trials, and the remainder were quasi-experiments. Six studies targeted Latino/Hispanic Americans, five African Americans, and five, Asian or Pacific Islander Americans. The two randomized control trials reviewed and rated "very high" quality, found educational interventions to have significant positive effects on advance care planning and advance directive completion and engagement for underrepresented racial or ethnic groups. CONCLUSION: The effectiveness of advance care planning, end-of-life, and palliative care interventions in improving outcomes for underrepresented racial and ethnic populations remains uncertain. Randomized controlled trials and educational interventions indicate that interventions targeting underrepresented groups can have significant and positive effects on advance directives and/or advance care planning-related outcomes. More high-quality intervention studies that address racial and ethnic health disparities in palliative care are needed, particularly those that address systemic racism and other complex multilevel factors that influence disparities in health.

Survival in hospice patients with dementia: the effect of home hospice and nurse visits.

BACKGROUND: Hospice patients with dementia are at increased risk for live discharge and long lengths of stay (>180 days), causing patient and family caregiver stress and burden. The location and timing of clinician visits are important factors influencing whether someone dies as expected, in hospice, or experiences a live discharge or long length of stay. OBJECTIVE: Examine how home hospice and nurse visit frequency relate to dying in hospice within the Medicare-intended 6-month period. DESIGN: Retrospective cohort study. SETTING: Non-profit hospice agency. PARTICIPANTS: Three thousand eight hundred and thirty seven patients with dementia who received hospice services from 2013 to 2017. METHODS: Multivariable survival analyses examined the effects of receiving home hospice (vs. nursing home) and timing of nurse visits on death within 6 months of hospice enrollment, compared to live discharge or long length of stay. Models adjust for relevant demographic and clinical factors. RESULTS: Thirty-nine percent (39%) of patients experienced live discharge or long length of stay. Home hospice patients were more likely to experience live discharge or long length of stays (HR for death: 0.77, 95%CI: 0.69-0.86, p < 0.001). Frequency of nurse visits was inversely associated with live discharge and long lengths of stay (HR for death: 2.87, 95%CI: 2.47-3.33, p < 0.001). CONCLUSION: Nearly 40% of patients with dementia in our study experienced live discharge or a long length of stay. Additional research is needed to understand why home hospice may result in live discharge or a long length of stay for patients with dementia. Nurse visits were associated with death, suggesting their responsiveness to deteriorating patient health. Hospice guidelines may need to permit longer stays so community-dwelling patients with dementia, a growing segment of hospice patients, can remain continuously enrolled in hospice and avoid burden and costs associated with live discharge.

Dementia and Early Do-Not-Resuscitate Orders Associated With Less Intensive of End-of-Life Care: A Retrospective Cohort Study.

BACKGROUND: Dementia is a leading cause of death among US older adults. Little is known about end-of-life care intensity and do-not-resuscitate orders (DNRs) among patients with dementia who die in hospital. AIM: Examine the relationship between dementia, DNR timing, and end-of-life care intensity. DESIGN: Observational cohort study. SETTING/PARTICIPANTS: Inpatient electronic health record extraction for 2,566 persons age 65 and older who died in 2 New York City hospitals in the United States from 2015 to 2017. RESULTS: Multivariable logistic regression analyses modeled associations between dementia diagnosis, DNR timing, and 6 end-of-life care outcomes. 31% of subjects had a dementia diagnosis; 23% had a DNR on day of hospital admission. Patients with dementia were 18%-40% less likely to have received 4 of 6 types of intensive care (mechanical ventilation AOR: 0.82, 95%CI: 0.67 -1.00; intensive care unit admission AOR: 0.60, 95%CI: 0.49-0.83). Having a DNR on file was inversely associated with staying in the intensive care unit (AOR: 0.57, 95%CI: 0.47-0.70) and avoiding other intensive care measures. DNR placement later during the hospitalization and not having a DNR were associated with more intensive care compared to having a DNR upon admission. CONCLUSIONS: Having dementia and a do-not resuscitate order upon hospital admission are associated with less intensive end-of-life care. Additional research is needed to understand why persons with dementia receive less intensive care. In clinical practice, encouraging advance care planning prior to and at hospital admission may be particularly important for patients wishing to avoid intensive end-of-life care, including patients with dementia.

Associations Between Hospice Care and Scary Family Caregiver Experiences.

CONTEXT: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. OBJECTIVES: To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life. METHODS: Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale. RESULTS: Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers. CONCLUSION: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.