Sharing health care wishes among older adults with cognitive impairment in primary care: Results from a randomized controlled trial.

INTRODUCTION: Best practices for conducting advance care planning (ACP) among persons with cognitive impairment exist, but evidence-based models are lacking for the primary care setting. METHODS: We tested a remote multicomponent ACP model (SHARE) versus minimally enhanced usual care in 273 person-family dyads from eight primary care practices. RESULTS: Mean patient age was 88.0 years, 85 (31.1%) were Black/Latino; 189 (69.2%) had moderate-to-severe cognitive impairment. Most (101/145; 69.6%) intervention dyads engaged in ACP. At follow-up, no treatment effect was observed for care partner-reported quality of communication about end-of-life care at 6 or 12 months, but intervention patients reported better quality of communication about end-of-life care at 12 months. Intervention care partners and patients reported greater readiness to engage in ACP at 6 and 12 months, respectively, and increased completion of key aspects of ACP. DISCUSSION: SHARE supported key aspects of ACP processes and communication about end-of-life care. HIGHLIGHTS: Primary care-based models of ACP for persons with dementia are lacking. Involving persons with cognitive impairment in remote ACP is feasible with care partner involvement. Results indicate benefit for aspects of ACP processes and communication about end-of-life care.

Adapting an Intervention to Address Barriers to Pain Management in Hospice: Formative Research to Inform EMPOWER-D for Dementia Caregivers.

Background: Nearly half of more than 1.7 million older Americans who receive hospice care each year have a primary or comorbid diagnosis of dementia. Pain is often undertreated in this patient population owing to myriad factors, including unmet informational needs among family caregivers. Objective: We sought to inform the adaptation of a pain education intervention for hospice family caregivers to the context of dementia by eliciting feedback on the educational content covered in adapted intervention materials. Design: We conducted a multimethod, formative research study to inform the adaptation of an existing, evidence-based intervention. Setting/Subjects: The study included a purposively recruited sample (n = 33) of hospice professionals (n = 18) and family caregivers (n = 15) from across the United States. Measurements: Participants quantitatively rated the importance of each of the eight pain concerns presented in the adapted intervention materials (1 = not important to 3 = very important) and provided qualitative feedback via Zoom interview on the acceptability, clinical accuracy, and potential benefits of the adapted content. We analyzed quantitative data via descriptive statistics and qualitative data via content analysis. Results: Participants rated the adapted educational content as highly important (rangemean = 2.56-3.00), particularly regarding concerns about caregivers' pain assessment, communicating with the hospice team about pain, and addressing misinformation regarding pain medication outcomes. Participants also provided suggestions to strengthen specific educational messages to improve comprehension and uptake. Conclusions: Findings support the continued development and testing of the adapted intervention.

Further Psychometric Evaluation of the Eight-Item Hospice Philosophy Scale: Results From a National Sample of Interdisciplinary Hospice Clinicians.

This study examined the psychometric properties of the eight-item Hospice Philosophy Scale (HPS-8) through confirmatory factor analysis; differential item functioning by age, gender, race, and professional discipline; and internal consistency reliability. We administered the HPS-8 to a national convenience sample of 471 interdisciplinary hospice clinicians. Confirmatory factor analysis results supported a one-factor model with an error correlation between two similarly worded items, χ2(19) = 48.38, p < .001 (RMSEA = .06, SRMR = .03, CFI = .98, TLI = .97). "Multiple indicators, multiple causes" model results indicated differential item functioning by age, race, and/or professional discipline on five items. However, subsequent uncorrected and differential item functioning-corrected models detected no statistically significant HPS-8 mean differences by grouping variables. Composite reliability results (CR = .82) demonstrated acceptable internal consistency reliability. Our results support the HPS-8 as a valid and reliable measure of attitudes toward the hospice philosophy of care in hospice clinicians.

Respect for the Patient-Oncologist Relationship May Limit Serious Illness Communication by Acute and Postacute Care Clinicians After Discharge to a Skilled Nursing Facility.

PURPOSE: There is a need to increase palliative care access for hospitalized older adults with cancer discharged to a skilled nursing facility (SNF) at risk of poor outcomes. Assessing and Listening to Individual Goals and Needs (ALIGN) is a palliative care intervention developed to address this gap. This study gathered perspectives from clinicians across care settings to describe perceptions on serious illness communication and care coordination for patients with cancer after discharge to a SNF to guide ALIGN refinements. METHODS: We conducted 37 semistructured interviews with clinicians and leaders in hospital medicine (n = 12), oncology (n = 9), palliative care (n = 12), home health care (n = 6), and hospice (n = 4). Some participants had experience working in more than one specialty. The Practical Robust Implementation and Sustainability Model framework was used to develop the interview guide that explored barriers to care, prognosis discussions, and hospice recommendations. Interviews were coded and analyzed using thematic content analysis. RESULTS: Analysis identified four themes: (1) discharge to a SNF is recognized as a time of worsening prognosis; (2) care silos create communication and information barriers during a period of increasing palliative care need; (3) family caregiver distress escalates following care transitions; and (4) lack of clarity of roles and respect for the patient-oncologist relationship limits prognostic communication and changes in focus of treatment. CONCLUSION: These findings suggest that acute and postacute care clinicians defer serious illness conversations to the oncologist when patients are on a steep trajectory of decline, experiencing multiple care transitions, and may have limited contact with their oncologist. There is a need to clarify roles among nononcology and oncology clinicians in discussing prognosis and recommending hospice for older adults discharged to SNF.

Assessing Advance Care Planning Fidelity within the Context of Cognitive Impairment: The SHARE Trial.

CONTEXT: Advance care planning (ACP) is critical among primary care patients with cognitive impairment, but few interventions have tested ACP with this population. OBJECTIVE: Describe the development and evaluation of a tool for assessing ACP fidelity within the context of cognitive impairment, including inter-rater reliability, convergent validity, and overall fidelity using clinical trial data. DESIGN: SHARE is a multicomponent intervention inclusive of facilitated ACP conversations. From a two group, single blind, randomized controlled trial, recorded ACP conversations were rated for fidelity. 145 primary care patients and their care partners were randomized to receive the intervention. Participating patients were 80+ years, had a care partner, and indications of cognitive impairment. An ACP Fidelity Checklist was developed with three subscales: Meeting Set-Up; ACP Meeting Topics; and Communication Skills. Scores were converted to percentages (100% = perfect fidelity) with a target of ≥80% fidelity. A post-ACP meeting report completed by ACP facilitators was used to assess convergent validity of the checklist. Intra-class correlation (ICC) was to evaluate inter-rater reliability. RESULTS: ACP conversations averaged 33.6 minutes (SD = 14.1). The mean fidelity score across N = 91 rated meetings was 82.9%, with a range of 77.3%-90.6% for subscales. 63.7% of meetings achieved a rating of ≥80%. Cognitive function was positively associated with patient participation (rho = .59, P < 0.001). For checklist items, ICC scores ranged from 0.43-0.96. Post-ACP meeting form scores were correlated with the checklist Meeting Topics subscale (r = 0.36, P = 0.001). CONCLUSIONS: Assessing the fidelity of ACP conversations involving primary care patients living with cognitive impairment and their care partners is feasible.

A Process Evaluation of a Palliative Care Social Work Intervention for Cancer Patients in Skilled Nursing Facilities.

Background: Assessing and Listening to Individual Goals and Needs (ALIGN) is a palliative care social work intervention that aims to improve delivery of goal-concordant care for hospitalized older adults with cancer discharged to skilled nursing facilities. Objective: Explore processes through which ALIGN may improve delivery of goal-concordant care to substantiate the conceptual model grounding the intervention and to inform mechanistic hypotheses of how the intervention might be effective. Design: A process evaluation triangulating findings from patient and caregiver interviews with a matrix analysis of ALIGN social worker notes. Setting/Participants: Patients (n = 6) and caregivers (n = 13) who participated in a single-arm pilot study of ALIGN in the United States and 113 intervention notes (n = 18 patients) written by 2 ALIGN social workers. Measurement: Qualitative thematic content analysis Results: Themes included the following: (1) ALIGN helped reconcile participants' misaligned expectations of rehabilitation with the reality of the patient's progressive illness; (2) ALIGN helped participants manage uncertainty and stress about forthcoming medical decision making; (3) the longitudinal nature of ALIGN allowed for iterative value-based goals of care discussions during a time when patients were changing their focus of treatment; and (4) ALIGN activated participants to advocate for their needs. Conclusions: ALIGN offers support in prognostic understanding, communication, and decision making during a pivotal time when patient and caregivers' goals have not been met and they are reassessing priorities. A larger trial is needed to understand how these processes may improve the ability of participants to make value-based decisions and aide in delivery of goal-concordant care. Clinical Trial Registration Number: NCT04882111.

Spanish Translation and Dissemination of EMPOWER Materials to Address Barriers to Pain Management at the End of Life.

Introduction: The Effective Management of Pain by Overcoming Worries to Enable Relief (EMPOWER) intervention is an evidence-supported approach for addressing barriers to pain management (e.g., patient/family concerns about addiction) at the end of life. Such barriers appear more pronounced among Spanish-speaking individuals. This study aimed to (1) translate EMPOWER materials into Spanish, (2) disseminate materials to hospices with ≥25% Hispanic patients, and (3) survey hospices about the use and usefulness of materials. Methods: We back translated EMPOWER materials with harmonization, then disseminated materials to 242 hospices. Thereafter, we used a semistructured survey to assess use and usefulness of EMPOWER materials using univariate statistics and content analysis. Results: Thirty-eight hospice representatives responded (participation rate = 15.7%). Respondents were primarily non-White (55.3%) and Hispanic (60.5%). Nealy half (47.4%) were nurses. A majority (81.6%) indicated they currently employ ≥1 full-time English-Spanish bilingual team member. Among those who reported receiving the EMPOWER materials (n = 29), 58.6% indicated they-or another staff member-used them with patients or families. Using a single-item rating (0 = not useful to 10 = very useful), respondents evaluated the English EMPOWER materials' usefulness as 7.6 (standard deviation [SD] = 1.4) and Spanish materials as 8.4 (SD = 1.4). Most (62.1%) indicated they would likely use EMPOWER materials in the future. Conclusion: Thematic findings suggest EMPOWER reinforces clinical education, promotes discussion about pain management, and helps address culturally specific barriers to care. EMPOWER appears to be a useful, easy to use, and promising intervention that can be implemented among both English- and Spanish-speaking populations.

Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation.

BACKGROUND: Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. OBJECTIVE: To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. METHODS: We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. RESULTS: Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. CONCLUSION: A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

Previous Experience in Medical Decision Making and Advance Care Planning Conversations: Findings From a Nationwide Cross-Sectional Survey.

Background: Despite the extensive literature on facilitating advance care planning (ACP) with patients with serious illnesses, opportunities to include surrogates or family caregivers are overlooked. The research objective was to examine whether previous medical decision-making involvement for a loved one is associated with one's own ACP conversations with family and the potential mediating effect of knowledge of a loved one's end-of-life treatment preferences. Methods: This study employed a cross-sectional design using data from the 2016 Kaiser Family Foundation/The Economist Four-Country Survey on Aging and End-of-Life Medical Care. The sample included 627 US adults who completed the survey and were involved in making medical decisions for a loved one in the past. Multiple binary logistic regression and linear regression models were established for mediation analyses. Results: Participants in our nationally derived sample were largely confident in their knowledge of a deceased loved one's end-of-life treatment preferences. 66.8% of the sample had ACP conversations with family. The involvement in a loved one's medical decision making was significantly associated with higher odds of having ACP conversations with family (OR = 1.93, P = .01), but this relationship was significantly mediated by knowledge of one's end-of-life treatment preferences (b = .31, Boot CI = .12-.49). Conclusions: Previous experience in making medical decisions for a loved one may facilitate one's own ACP behavior through knowing a loved one's end-of-life treatment preferences. Clinicians in end-of-life settings are uniquely positioned to engage family members who were involved in medical decision-making for others before in ACP.

Associations Between Certificate of Need Policies and Hospice Quality Outcomes.

BACKGROUND: Certificate of need (CON) laws are state-based regulations requiring approval of new healthcare entities and capital expenditures. Varying by state, these regulations impact hospices in 14 states and DC, with several states re-examining provisions. AIM: This cross-sectional study examined the association of CON status on hospice quality outcomes using the hospice item set metric (HIS). DESIGN: Data from the February 2022 Medicare Hospice Provider and General Information reports of 4870 US hospices were used to compare group means of the 8 HIS measures across CON status. Multiple regression analysis was used to predict HIS outcomes by CON status while controlling for ownership and size. RESULTS: Approximately 86% of hospices are in states without a hospice CON provision. The unadjusted mean HIS scores for all measures were higher in CON states (M range 94.40-99.59) than Non-CON (M range 90.50-99.53) with significant differences in all except treatment preferences. In the adjusted model, linear regression analyses showed hospice CON states had significantly higher HIS ratings than those from Non-CON states for beliefs and values addressed (ß = .05, P = .009), pain assessment (ß = .05, P = .009), dyspnea treatment (ß = .08, P < .001) and the composite measure (ß = .09, P < .001). Treatment preferences, pain screening, dyspnea screening, and opioid bowel treatment were not statistically significant (P > .05). CONCLUSION: The study suggests that CON regulations may have a modest, but beneficial impact on hospice-reported quality outcomes, particularly for small and medium-sized hospices. Further research is needed to explore other factors that contribute to HIS outcomes.

Spirituality moderates the relationship between cancer caregiver burden and depression.

OBJECTIVES: Cancer has become a chronic disease that requires a considerable amount of informal caregiving, often quite burdensome to family caregivers. However, the influence of spirituality on the caregivers' burden and mental health outcomes has been understudied. This study was to examine how caregiver burden, spirituality, and depression change during cancer treatment and investigate the moderating role of spirituality in the relationship between caregiver burden and depression for a sample of caregivers of persons with cancer. METHODS: This secondary analysis used a longitudinal design employing 3 waves of data collection (at baseline, 3 months, and 6 months). Family caregivers completed the Caregiver Reaction Assessment, Spiritual Perspective Scale, and the PROMIS® depression measure. Linear mixed model analyses were used, controlling for pertinent covariates. RESULTS: Spirituality, total caregiver burden, and depression remained stable over 6 months. More than 30% of the caregivers had mild to severe depressive symptoms at 3 time points. There was evidence of overall burden influencing depression. Of note was a protective effect of caregivers' spirituality on the relationship between depression and caregiver burden over time (b = -1.35, p = .015). The lower the spirituality, the stronger the relationship between depression and burden, especially regarding subscales of schedule burden, financial burden, and lack of family support. SIGNIFICANCE OF RESULTS: Spirituality was a significant resource for coping with caregiving challenges. This study suggests that comprehensive screening and spiritual care for cancer caregivers may improve their cancer caregiving experience and possibly influence the care recipients' health.

Estimating the Impact of Hospice Care on Key Patient-Family Care Outcomes Using a Nationwide U.S. Probability Sample.

Hospice is touted as an exemplary model for end-of-life care. However, there is little generalizable evidence estimating benefits of hospice at the national level. Using a national population-based probability sample of U.S. adults with weights applied (data collected Spring/Summer 2015), we conducted six logistic regression models to evaluate linkages between hospice involvement and end-of-life outcomes (pain, home death, presence of family, access to life-prolonging care, respect for spiritual/religious beliefs, financial burden) from N = 235 informal caregivers of decedents prior to death. Respondents were M = 55 years old (SD = 17), 55% female, 77% White, 91% non-Hispanic, and 71% had cared for a hospice recipient. In fully adjusted analyses, hospice users had better reported outcomes observed in two models: (a.) presence of family/friends at death (OR = 2.82, SE = .48, P < .05), and (b.) respect for spiritual/religious beliefs (OR = 9.52, SE = .73, P < .01). Hospice utilization was not statistically significant (P > .05) in all other adjusted models. Although more research is needed, findings support claims that hospice remains a high quality option for end-of-life care in the U.S.

Change in U.S. Hospice Quality Measure Scores During the COVID-19 Pandemic and Correlation With Exposure to State Policies for Protection of Older Adults.

BACKGROUND: To limit spread of COVID-19, many U.S. states adopted policies affecting access to older adults, including those in hospice. This study aimed to assess differences in hospice quality measures from before COVID-19 to during the COVID-19 pandemic and to evaluate for any correlation with these state policies. METHODS: Scores (treatment preferences, believes/values, pain screening and assessment, dyspnea screening and treatment, bowel regimen, and a composite score) and Denominators (population being measured) for CMS's Hospice Item Set were compared using a paired t-test between a pre-pandemic period (01/2019-12/2019) and a period early in the pandemic in the U.S (7/2020-6/2021). Correlations between HIS composite scores from 9 months (7/2020-3/2021) and exposure to state policies for older adult protection, and covariates, were assessed by linear regression. RESULTS: Data were collected on 3535 hospices. Seven of 8 HIS scores increased during the pandemic period. The remaining score was unchanged. All Denominators decreased. There was negative correlation between composite score (7/2020-3/2021) and exposure to state policies for protecting older adults. There were positive correlations with hospice age, for-profit status, 2019 average daily census, and 2019 composite score. CONCLUSION: Most HIS scores increased during this COVID-19 pandemic period; there was a small, significant negative correlation between the composite quality score and exposure to state policies for older adult protection. Further research is needed to better understand the effects of the COVID-19 pandemic on hospice care in the U.S. and globally, and future additions in quality reporting may facilitate real-time assessment during future public health emergencies.

Exposure to a Loved One's Death and Advance Care Planning: Moderating Effects of Age.

Background: Despite documented benefits of Advance Care Planning (ACP), it is still under-utilized in the U.S. Our study aimed to examine whether experiencing a loved one's death is associated with one's own ACP behavior among adults in the U.S. and the potential moderating effect of age. Method: Using a nationwide cross-sectional survey design with probability sampling weights, our study included 1006 adults in the U.S. who participated in and completed the Survey on Aging and End-of-Life Medical Care. Three binary logistic regression models were established to investigate the relationship between death exposure and different aspects of ACP (i.e., informal conversations with family members and doctors and formal advance directives completion). The moderation analysis was subsequently conducted to examine moderating effects of age. Results: The exposure to a loved one's death was significantly associated with higher odds of having conversations with family about end-of-life medical care preferences among the 3 indicators of ACP (OR = 2.03, P < .001). Age significantly moderated the association between death exposure and ACP conversations with doctors (OR = .98, P = .017). The facilitation effect of death exposure on informal ACP engagement in discussing end-of-life medical wishes with doctors is stronger among younger adults than older adults. Conclusions: Exploring an individual's previous experience with a loved one's death might be an effective way to broach the concept of ACP among adults of all ages. This strategy may be particularly useful in facilitating discussions of end-of-life medical wishes with doctors among younger adults than older adults.

Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer's Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes.

BACKGROUND: Palliative care is an effective model of care focused on maximizing quality of life and relieving the suffering of people with serious illnesses, including dementia. Evidence shows that many people receiving care in nursing homes are eligible for and would benefit from palliative care services. Yet, palliative care is not consistently available in nursing home settings. There is a need to test pragmatic strategies to implement palliative care programs in nursing homes. METHODS/DESIGN: The UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer's Disease) study is a pragmatic stepped wedge trial in 16 nursing homes in Maryland and Indiana, testing the effectiveness of the intervention while assessing its implementation. The proposed intervention is a palliative care program, including 1) training at least two facility staff as Palliative Care Leads, 2) training for all staff in general principles of palliative care, 3) structured screening for palliative care needs, and 4) on-site specialty palliative care consultations for a one-year intervention period. All residents with at least moderate cognitive impairment, present in the facility for at least 30 days, and not on hospice at baseline are considered eligible. Opt-out consent is obtained from legal decision-makers. Outcome assessments measuring symptoms and quality of care are obtained from staff and family proxy respondents at four time points: pre-implementation (baseline), six months after implementation, at 12 months (conclusion of implementation), and six months after the end of implementation. Palliative care attitudes and practices are assessed through surveys of frontline nursing home staff both pre- and post-implementation. Qualitative and quantitative implementation data, including fidelity assessments and interviews with Palliative Care Leads, are also collected. The study will follow the Declaration of Helsinki. DISCUSSION: This trial assesses the implementation and effectiveness of a robust palliative care intervention for residents with moderate-to-advanced cognitive impairment in 16 diverse nursing homes. The intervention represents an innovative, pragmatic approach that includes both internal capacity-building of frontline nursing home staff, and support from external palliative care specialty consultants. TRIAL REGISTRATION: The project is registered on ClinicalTrials.gov: NCT04520698.

Perspectives on Social Justice among Hospice and Palliative Care Social Workers: Voices from the Field.

Hospice and palliative care are burgeoning fields of social work practice. Within the social work profession, the pursuit of social justice is a defining ethical value. While some research exists on social justice within palliative and hospice care, no studies have examined its meaning within the context of this highly specialized field. To date, there is an absence of empirical research examining the meaning of social justice within a sample of hospice and palliative social workers. This study attempts to fill this gap. We used qualitative and quantitative survey items to ask hospice and palliative care social workers about the meaning of social justice within their unique practice setting, as well as to identify prominent social injustices and opportunities for action. Using responses from 51 seasoned practitioners, we found that social workers generally defined social justice as equitable access to three core areas-basic needs, high quality care, and education (for both patients, families, and providers)-regardless of a person's group membership (e.g., race, class, sexual orientation). Participants also made recommendations for improving social justice in clinical practice through advocacy and other initiatives.

Sharing Health Care Wishes in Primary Care (SHARE) among older adults with possible cognitive impairment in primary care: Study protocol for a randomized controlled trial.

OBJECTIVE: Little is known about effective strategies to improve advance care planning (ACP) for persons with cognitive impairment in primary care, the most common setting of care. We describe a randomized controlled trial to test the efficacy of a multicomponent communication intervention, "Sharing Healthcare Wishes in Primary Care" (SHARE). PARTICIPANTS: Planned enrollment of 248 dyads of adults 80 years and older with possible cognitive impairment and their care partner, from primary care clinics at 2 Mid-Atlantic health systems. METHODS: The treatment protocol encompasses an introductory letter from the clinic; access to a designated facilitator trained in ACP; person-family agenda-setting to align perspectives about the family's role; and print education. The control protocol encompasses minimally enhanced usual care, which includes print education and a blank advance directive. Randomization occurs at the individual dyad-level. Patient and care partner surveys are fielded at baseline, 6-, 12-, and 24- months. Fidelity of interventionist delivery of the protocol is measured through audio-recordings of ACP conversations and post-meeting reports, and by ongoing monitoring and support of interventionists. OUTCOMES: The primary outcome is quality of end-of-life care communication at 6 months; secondary outcomes include ACP process measures. An exploratory aim examines end-of-life care quality and bereaved care partner experiences for patients who die by 24 months. CONCLUSIONS: Caregiver burden, clinician barriers, and impaired decisional capacity amplify the difficulty and importance of ACP discussions in the context of cognitive impairment: this intervention will comprehensively examine communication processes for this special subpopulation in a key setting of primary care. REGISTRATION: ClinicalTrials.gov: NCT04593472.

A systematic review of specialty dementia care units in long-term care settings.

BACKGROUND: Alzheimer's disease and related dementias (ADRD) are common among nursing home residents. Yet, conclusive evidence regarding best care practices among this population is lacking. Objectives of this systematic review were to explore features of dementia specialty care units (DSCUs) in long-term care settings and examine benefits for residents, staff, families, and facilities. METHODS: PubMed, CINAHL, and PsychINFO were searched to identify articles involving DSCUs in long-term care settings published in English with full text available between 01.01.2008 and 06.03.2022. Articles containing empirical data about ADRD special care in long-term care settings were included in the review. Articles focused on clinic-based or out-patient dementia care programs (e.g., adult day care) were excluded. Articles were categorized based on geography (U.S. vs. international) and study design: interventions, descriptive studies, or comparison studies (traditional vs. specialty ADRD care). RESULTS: Our review included 38 U.S. articles and 54 articles from 15 international countries. In the U.S., 12 intervention, 13 descriptive, and 13 comparison studies met the inclusion criteria. Articles from international countries included 22 intervention, 20 descriptive, and 12 comparison studies. Results were mixed in terms of the efficacy of DSCUs. Promising DSCU features include small-scale settings, dementia-educated staff, and multidisciplinary approaches to care. CONCLUSION: Overall, our review did not find conclusive evidence regarding the benefits of DSCUs in long-term care settings. No rigorous study designs were found examining 'special' features of DSCUs and associations with outcomes among residents, family, staff, and the facility. Randomized clinical trials are needed to disentangle the 'special' features of DSCUs.

Pilot Trial of a Social Work Intervention to Provide Palliative Care for Adults with Cancer in Skilled Nursing Facilities.

Background: Hospitalized patients with cancer and their caregivers discharged to skilled nursing facilities (SNFs) have unmet palliative care needs. Objective: To determine feasibility and acceptability of Assessing and Listening to Individual Goals and Needs (ALIGN), a palliative care social worker (PCSW) intervention, for older adults and their caregivers in SNFs. Design: Single-arm, single-site pilot study. Predefined feasibility goals were >70% intervention completion and study retention rates (postintervention outcomes completed at one week). Setting/Subjects: Twenty-three patients with cancer and their 21 caregivers discharged to 12 SNFs posthospitalization. Measurements: Primary outcomes were feasibility and acceptability. Exploratory patient and caregiver-reported outcomes, including goals of care were collected at baseline and one week postintervention. Health care utilization, mortality, and hospice utilization was collected at the six-month follow-up. Results: Of 73 patients screened, 35 (48%) were eligible and 23 (66%) patients and 21 caregivers enrolled. Eighteen (78%) patients completed the intervention and 10 (44%) patients and 13 (62%) caregivers provided follow-up outcomes. Average age of patients was 73, and 19 (83%) had stage III or IV cancer. Average age of caregivers was 55. Eight (44%) patients' preferences changed to prefer less aggressive care. Nineteen (83%) patients died during or shortly after intervention completion. Qualitative feedback from participant and SNF staff interviews supported high acceptability. PCSW involvement increased illness understanding and patient engagement with advance care planning. SNF staff valued increased palliative support. Conclusions: Intervention completion was >70%, however, not study retention due to higher-than-expected mortality. Future study should account for high mortality and examine whether ALIGN can better prepare surrogate decision makers and enhance the ability of SNFs to address changing goals of care. Clinical Trial Registration Number NCT04882111.

When Living Wills go Missing: Associations With Hospice Use and Hospital Death Using National Longitudinal Data.

Despite documented benefits of advance care planning (ACP), understandings about the impact of advance directives (AD)-critical steps in the ACP process-remain limited. As a type of AD, living wills (LWs) are often misplaced or forgotten about. This study explores the prevalence of missing LWs among older adults in the U.S. and its association with in-hospital death and hospice care use. Analyses are based on 692 participants who responded to LW completion questions in the 2016 Core and 2018 wave of the Health and Retirement Study Nearly a fifth of American older adults age 65+ had an LW that went missing. Stepwise logistic regression results show that completed LWs confirmed by both individuals and their proxies were associated with increased hospice use and fewer hospital deaths. Individuals whose LWs went missing still had better end-of-life care than those who did not have an LW.