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.

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.

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.

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.

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.

Bereavement Support Services in a National Sample of Hospices: A Content Analysis.

Although the Medicare Hospice Benefit mandates that hospices offer bereavement support services to families for at least 1 year following the death of a patient, it does not stipulate which services they should offer. As a result, little is known about what bereavement support services hospices provide, especially on a national scale. The current study recruited a national sample of hospice representatives who responded to an open-ended question that asked, "What types of bereavement support services does your hospice provide to families?" Seventy-six viable responses were recorded and content analyzed. Four overarching domains emerged: (a) timing of support, (b) providers of support, (c) targets of support, and (d) formats of support. Other notable findings included the underutilization of bereavement support services and the utility of informal support formats. These findings present implications for future study regarding which specific aspects of hospice bereavement support services are most beneficial to bereaved families.

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.

Priority Research Topics and Patient and Family Needs in a National Sample of Hospice Agencies.

CONTEXT: Various contextual factors surrounding hospice care have reinforced the need for scholars to pursue practice-relevant research questions. Although priority-setting is a primary approach to streamline such efforts, research appears yet to have conducted priority-setting with hospice professionals. OBJECTIVE: To describe the areas of needed research and clinical focus voiced by a national probability sample of US hospice agency representatives. METHODS: A national probability sample of 600 hospice agencies proportionately stratified by state and profit status was surveyed. At the end of the survey, participants indicated whether or not they were willing to answer two additional open-ended questions. These two questions requested participants' input on areas of needed attention related to (1) research topics and (2) unmet needs for patients and families. Responses were content analyzed. RESULTS: A total of 317 surveys were completed (response rate = 61.8%). Viable responses were recorded by 129 participants responding to at least one item. Content analysis generated the following five categories (and various subcategories): earlier access to hospice, education (outside physicians, patients and families, public), policy barriers to hospice enrollment (hospice eligibility and reimbursement, gaps in insurance coverage), effects of policy restrictions on hospice care (reimbursement for care, pain management, clinician issues), and improving the provision of in-home hospice care (community resources, supports for caregivers, supports for when caregiver assistance is inadequate, needs already are being met). CONCLUSION: These findings presented by hospice agency representatives reflect directions for research and clinical development. Efforts are needed to cohere professional- and patient-reported areas of needed attention.

Higher perceived stress during admission is associated with shorter retention in short-term residential substance use disorder treatment.

Introduction: Over one million people in the U.S. received residential treatment for a substance use disorder (SUD) in 2020. Longer treatment retention is associated with better outcomes (e.g., reduced substance use). Entering treatment with higher stress may be associated with shorter retention. This paper examines the impact of perceived stress at admission on SUD treatment retention in short-term residential treatment. Methods: A sample of 271 treatment episodes with admissions between October 2019 and February 2020 were collected from de-identified records of an urban mid-Atlantic adult 28-day short-term residential SUD treatment facility. Treatment completion involved finishing 28 days. Sociodemographic, substance use, perceived stress, and treatment discharge variables were analyzed. Bivariate analyses examined differences between treatment completion and early discharge, and Cox regression investigated the effect of perceived stress on treatment retention with covariates. Results: The sample was primarily male (73.8%) and non-Hispanic Black (71.6%). A majority used heroin as their primary substance (54.6%) and reported polysubstance use (72.3%). About half (51.3%) completed treatment, and completed an average of 18.7 (SD = 10.7) days. Those who prematurely discharged from treatment stayed an average of 8.9 (SD = 7.0) days. The Cox regression model found that higher perceived stress (adjusted hazard ratio (AHR) = 1.028; 95% CI = [1.005, 1.053], p =.019) and a race/ethnicity other than non-Hispanic Black (AHR = 1.546, 95% CI = [1.037, 2.305], p =.033) predicted premature discharge. Conclusions: Perceived stress at admission is associated with shorter treatment retention. Early stress management interventions may help increase treatment retention.

Nursing Home Alzheimer's Special Care Units: Geographic Location Matters.

OBJECTIVES: Limited data suggest nursing home (NH) Alzheimer's special care units (ASCUs) may improve care and outcomes among residents with dementia. Unfortunately, information describing NH characteristics related to presence of ASCUs is lacking, especially whether location and neighborhood resources influence their presence. We examined locations of NHs with ASCUs and assessed whether neighborhood socioeconomic deprivation, region, and levels of rurality were associated with NH ASCUs. DESIGN: Cross-sectional. SETTING AND PARTICIPANTS: Contiguous United States; we used 2017 LTCfocus and NH Compare data to identify free-standing NHs and obtain addresses (N = 13,207 NHs). METHODS: NH ZIP+4 codes were linked to the Area Deprivation Index (ADI) (within-state ranking of neighborhood deprivation). The 9 census-defined regions of the United States and Rural Urban Continuum codes categorized location. Descriptive analyses and binary logistic regression models, adjusting for NH characteristics, examined associations between NH ASCUs and location. RESULTS: Nearly 15% of NHs had ASCUs. In adjusted models, odds of NH ASCUs were 58% to 69% lower in Pacific, Middle Atlantic, and Southern regions compared with the East North Central region (P values <.001). Odds of NH ASCUs increased 25% to 47% as rurality increased relative to NHs in the most metropolitan areas (P < .01); however, odds of NH ASCUs decreased 63% in the most rural areas (P < .001). ADI was not significantly associated with NH ASCUs. For-profit NHs had 42% lower and chain-affiliated NHs 34% higher odds of ASCUs (P < .001). NHs with higher total staffing hours had 29% higher odds of ASCUs; odds of ASCUs were 46% lower in NHs with more RN staffing hours (P < .001). CONCLUSIONS AND IMPLICATIONS: Using a robust sample, region, rurality, ownership, and nursing hours significantly predicted NH ASCUs whereas ADI did not. Geographically tailored interventions should be considered to promote use of NH-based ASCUs.

A conceptual framework for understanding financial burden during serious illness.

Life-threatening illness is associated with financial burden among families. During this time, care-related expenses often increase. The concept of financial burden has not fully been explored nor conceptually described in the literature. Our study coalesces the empirical literature on financial burden into a more comprehensive multidimensional theoretical framework to understand financial burden among patients and families dealing with serious illness. Using Jabareen's phased approach for building conceptual frameworks, we synthesized the existing scientific literature (including existing measures of financial burden) to construct an empirically derived model. Definitions of financial burden are overlapping with similarities, but also inconsistencies. Many studies have focused more on objective and operational definitions, than subjective and conceptual aspects. Regarding measures for financial burden, many studies have only used a few items. The financial burden is dependent on the illness trajectories and duration. By considering multidimensionality, we illustrate potential financial burden factors (objective, coping, and subjective). Although anticipation and expectations about future financial issues are important, patients and caregivers generally experience objective aspects of burden, followed by subjective impressions of burden. Coping skills likely reduce subjective burden. Based on the results, we redefine the financial burden among patients with life-threatening illness and caregivers.

High-Quality Nursing Home and Palliative Care-One and the Same.

Many individuals receiving post-acute and long-term care services in nursing homes have unmet palliative and end-of-life care needs. Hospice has been the predominant approach to meeting these needs, although hospice services generally are available only to long-term care residents with a limited prognosis who choose to forego disease-modifying or curative therapies. Two additional approaches to meeting these needs are the provision of palliative care consultation through community- or hospital-based programs and facility-based palliative care services. However, access to this specialized care is limited, services are not clearly defined, and the empirical evidence of these approaches' effectiveness is inadequate. In this article, we review the existing evidence and challenges with each of these 3 approaches. We then describe a model for effective delivery of palliative and end-of-life care in nursing homes, one in which palliative and end-of-life care are seen as integral to high-quality nursing home care. To achieve this vision, we make 4 recommendations: (1) promote internal palliative and end-of-life care capacity through comprehensive training and support; (2) ensure that state and federal payment policies and regulations do not create barriers to delivering high-quality, person-centered palliative and end-of-life care; (3) align nursing home quality measures to include palliative and end-of-life care-sensitive indicators; and (4) support access to and integration of external palliative care services. These recommendations will require changes in the organization, delivery, and reimbursement of care. All nursing homes should provide high-quality palliative and end-of-life care, and this article describes some key strategies to make this goal a reality.

Recommendations for Preventing Medication Diversion and Misuse in Hospice Care: A Modified Delphi Study.

CONTEXT: Recommendations are needed to help minimize the risks of medication diversion and misuse in the hospice setting. OBJECTIVE: To identify recommendations that could help prevent medication diversion and misuse in hospice care. METHODS: A modified Delphi method was utilized. An interdisciplinary panel of ten experts engaged in three phases of online and in-person voting regarding recommendations. Consensus for recommendations required a minimum of 80% endorsement by the panel experts. After two rounds of voting and several rounds of informal voting, 15 total recommendations were endorsed. RESULTS: Fifteen recommendations achieved at least 80% endorsement during the final round of voting. Each of the following recommendation topics received ≥ 80% endorsement, the need to balance prevention efforts with quality care, screening clinical job candidates, family education and screening, medication monitoring, responding to missing/diverted medications, and medication disposal. Panelists rated the Patient & Family Education recommendation as most important (M = 9.7; SD = 0.7) followed closely by Responding to Medication Diversion or Misuse (M = 9.5; SD = 1.1). CONCLUSION: These recommendations were created by experts in the field to reduce the risk of medication diversion and misuse. Further steps towards implementation may appropriately reduce these risks.

Caregiver burden and related factors during active cancer treatment: A latent growth curve analysis.

PURPOSE: Caregiver burden is frequently studied cross-sectionally, but longitudinal studies on family caregiver burden during active cancer treatment are lacking. The goals of this study were to characterize trajectories of caregivers' burden during a 6-month active treatment period, and to examine which predictors are associated with their burden. METHOD: This study was a secondary analysis of data from a prospective study. A sample of 112 family caregivers of patients receiving cancer treatment were assessed at three time points (the initiation of new treatment regimen, 3-, and 6-month follow-up). Caregivers completed measures: Caregiver Reaction Assessment and Mutuality Scale of the Family Care Inventory. Data were analyzed using latent growth curve modeling. RESULTS: The two highest burdens were subdomains related to disrupted schedule and financial problems. Models showed a decline in schedule burden over time, yet total burden and other subscales (financial problems, health problems, and lack of family support and self-esteem) remained relatively stable. In multivariate analysis, mutuality, the relationship quality between patients and caregivers was inversely related to burden at baseline. Being a spouse, a sole caregiver and lower income were related to higher burden over time. CONCLUSIONS: Our findings confirmed significant determinants of caregiver burden over the course of active treatment. It is important for health care providers to be attentive to vulnerable caregivers who are at higher risk of elevated burden over time. Considering the multidimensional nature of caregiver burden, early assessment and tailored support programs may be effective by focusing on patient-caregiver relationships, caregiving roles, and income.

A National Survey of Challenges Faced by Hospices During the Opioid Crisis: Estimates of Pain Medication Shortages, Missing Medications, and Opioids Left in the Home Post-Death.

CONTEXT: No national data exist on hospice medication shortages, the frequency that opioid medications go missing, and drug disposal practices. OBJECTIVES: To provide national estimates for hospices on: drug shortages; frequency of missing medications; and opioids left in the home post-death. METHODS: A national survey of 600 randomly selected hospices stratified by state and profit status (data collection 2018). Sample weights were applied to adjust for non-response. Respondents were hospice representatives knowledgeable about agency policies and practices. Participants reported their knowledge and perceptions about medication shortages, frequency that opioid medications go missing, and the proportion of hospice deaths in which opioids are left in the home. Findings were stratified by agency size. RESULTS: 371 hospices completed surveys (response rate = 62%), half (50%) of which were mid-sized (26-100 patients), and not-for-profit. Respondents had 7.5 years (SD = 7.7) of agency experience. 42% of hospices - and 61% of large hospices - reported medication shortages. Among the full sample, 28% of agencies indicated shortages of morphine; 20% reported shortages of hydromorphone. Nearly half (43%) of hospice representatives reported that missing opioid medications occurred within the last 90 days. 52% of representatives reported employees are not allowed to dispose of medications after a home death; and, among home deaths, unused opioids were left in the home 32% of the time. This suggests opioid medications are frequently left in U.S. households after a hospice home death. CONCLUSION: Hospices face numerous challenges during the national opioid crisis. Interventions are needed to ensure access to needed treatments, mitigation of diversion, and safe medication disposal.