Holland, Diane E.

Abstract Objectives People with dementia often have high care needs at end of life. We compared care delivery in the last year of life for people living with dementia in the community (home/assisted living facilities, ALF) to those in skilled nursing facilities (SNF). Methods This was a retrospective study of people who died with a diagnosis of dementia in the community compared with SNF between 2013 and 2018. Primary outcomes of hospitalizations/ED visits in the last year of life were measured. Secondary outcomes included advance care planning (ACP) completion, hospice enrollment, provider visits and ICU admissions. Results Of 1203 people with dementia, 581 (48.3%) were living in a SNF and 622 (51.7%) in the home/ALF. At least one hospitalization was recorded for 70.7% in the home/ALF compared with 50.8% in the SNF (p< 0.01), similar to ED visits (80.2% versus 58% in home/ALF and SNF groups, respectively, p< 0.01). People in the SNF had more provider visits (median 9 (IQR 6, 12) compared with 5 (IQR 3,9) in the home/ALF group (p< 0.01). There was no ACP for 12% of those in the home/ALF, compared with 4.6% in the SNF(p< 0.01). Approximately half (56.5%) in the SNF were enrolled in hospice compared with 68.3% in the home/ALF group (p< 0.01), Median time in hospice was 26.5 days in the SNF versus 30 days in the home/ALF (p=0.67). Conclusions People living with dementia have frequent acute care utilization in the last year of life. Hospice care was more common in the home/ALF. Time in hospice was short.

Abstract Compared to urban caregivers, rural caregivers experience greater burdens accessing coordinated care for their loved ones during and after hospital discharge. The impact of technology-enhanced transitional palliative care (TPC) on patient and caregiver outcomes is currently being evaluated in a randomized control trial. This study evaluates resource use and health system costs of this caregiver-focused TPC intervention. Rural caregivers of hospitalized patients in Minnesota, Wisconsin, and Iowa were enrolled in an 8-week intervention consisting of video visits, conducted by a registered nurse, supplemented with phone calls and texts (n=207). Labor costs were estimated using the Bureau for Labor Statistics median hourly rate for a registered nurse and compared to a scenario analysis using a nurse practitioner or social worker wages. Hours spent conducting the visits and charting were calculated using study data. A one-way sensitivity analysis estimated resource use over a range of visits per caregiver and time per visit. Caregivers received 8.8 visits on average over the study period at 45 minutes per visit. In the base case, TPC cost $330 per caregiver facilitated by a registered nurse, compared to $281 and $489 if facilitated by a social worker or nurse practitioner, respectively. The number of visits had the greatest influence on total costs of the intervention (low of $198, high of $463). TPC is a feasible, low cost strategy to enhance caregiver support in rural areas. These results pose an opportunity to consider reimbursement mechanisms to evaluate the sustainability of transitional palliative care interventions to support caregivers.

Managing the complex care needs of seriously ill patients transitioning from hospital to home can have detrimental effects on family caregivers (FCG). Multi-component interventions tailored to FCG needs are most effective at reducing caregiver burden, distress, and depression. However, gaps exist in determining best methods to assess, document, and analyze intervention components for FCGs. Common methods used to capture patient data during transitions in care may not be appropriate or allowed for FCG needs. As such, we present a methodological approach for electronically capturing, reporting, and analyzing multiple intervention components. This approach uses a standardized terminology and pathway for tailoring intervention components in real time while evaluating intervention effects across time. We use examples from a randomized controlled trial to illustrate the benefits of the current approach for analyzing the effectiveness of multi-component interventions in the context of caregiving research.

Objective People living with dementia often have high care needs at the end-of-life. We compared care delivery in the last year of life for people living with dementia in the community (home or assisted living facilities [ALFs]) versus those in skilled nursing facilities (SNFs). Methods A retrospective study was performed of older adults with a dementia diagnosis who died in the community or SNFs from 2013 through 2018. Primary outcomes were numbers of hospitalizations and emergency department visits in the last year of life. Secondary outcomes were completed advance care plans, hospice enrollment, time in hospice, practitioner visits, and intensive care unit admissions. Results Of 1203 older adults with dementia, 622 (51.7%) lived at home/ALFs; 581 (48.3%) lived in SNFs. At least 1 hospitalization was recorded for 70.7% living at home/ALFs versus 50.8% in SNFs ( P < .001), similar to percentages of emergency department visits (80.2% vs 58.0% of the home/ALF and SNF groups, P < .001). SNF residents had more practitioner visits than home/ALF residents: median (IQR), 9.0 (6.0-12.0) versus 5.0 (3.0-9.0; P < .001). No advance care plan was documented for 12.2% (n = 76) of the home/ALF group versus 4.6% (n = 27) of the SNF group ( P < .001). Nearly 57% of SNF residents were enrolled in hospice versus 68.3% at home/ALFs ( P < .001). The median time in hospice was 26.5 days in SNFs versus 30.0 days at home/ALFs ( P = .67). Conclusions Older adults with dementia frequently receive acute care in their last year of life. Hospice care was more common for home/ALF residents. Time in hospice was short.

As a new era of healthcare advocates a more valuable and intelligent approach to care management and delivery based on values and outcomes, shifts toward risk management to boost performance should be considered that encompass the capitalization of health assets or health strengths. To make full use of individuals’ or populations’ health assets, data capture and representation are needed. This paper uses a strengths-oriented case study mapped to an inter-disciplinary standardized terminology, the Omaha System, to illustrate and compare the conventional problem-based approach to care management with the strengths-oriented approach to care that demonstrates whole-person data capture of an individual’s health and health assets leveraged to promote health values and performance. The Omaha system provides a standardized framework to organize the concepts of all of health from a whole-person perspective for documentation to enable data analysis, interoperability, and health information exchange.

16 Background: Family caregivers have been shown to have their own unique challenges when caring for someone with advanced cancer. These challenges may be more pronounced among rural caregivers. We present early lessons regarding caregiver needs from an intervention study that provides teaching, guidance, and counseling to rural family caregivers of individuals who received palliative care in the hospital and transitioned home. Methods: A randomized clinical trial is underway to test the efficacy of a care model that focuses on supporting rural family caregivers’ medical needs, self-care, and direct caregiving needs. We have developed a nurse-led, technology-enhanced intervention for family caregivers delivered over 8 weeks after hospital discharge of those receiving palliative care consults. The intervention includes video and phone visits between a palliative care nurse and caregiver. Caregiver needs and nurse strategies are documented using a standardized terminology in an electronic datafile. Results: Preliminary data from 21 family caregivers of individuals with advanced cancer who completed the intervention to date indicate caregivers personally had an average of 2.2 chronic conditions (up to 10) and were taking an average of 3.14 (up to 11) medications. In addition to challenges providing direct care, caregivers reported difficulty managing stress or depression (7/21; 33.3%); issues related to grief (6/21; 28.5%); inadequate sleep and rest (6/21; 28.5%), low or no income or uninsured medical expenses (5/21; 23.8%); and interpersonal challenges within families and with friends (5/21, 23.8%). Conclusions: Preliminary data from our study suggest that assessing the caregiver’s individual needs related to well being and self-care as well as direct caregiving is imperative to delivering caregiver support services that can improve the ability of family caregivers to provide care for their loved ones with advanced cancer. Clinical trial information: NCT03339271.

Abstract To date, nearly 40 U.S. states have passed the Caregiver Advise Record and Enable (CARE) Act to support family caregivers during transitions from hospital to home. These laws require hospitals to: 1) record designated family caregivers’ name in a patient medical records during a hospital stay; 2) inform the caregiver when the patient will be discharged; 3) provide education and instructions on care tasks needed for post-hospital discharge. Transitions from hospital to home are often fraught with adverse event risk and poor continuity of care, especially for rural patients with progressive life-limiting conditions. The CARE ACT has potential to address healthcare system factors that are sometimes attributable to poor transitions in care. Our presentation focuses on preliminary findings from an intervention that provides teaching, guidance, and counseling to caregivers caring for an individual receiving palliative care in the hospital and transitioning home to a rural setting. Findings suggest that the CARE ACT may be vital, but not fully sufficient, for successful transitions. Additional targets for caregiver interventions to improve transitions for this subset of very ill patients include: 1) attend to caregivers’ medical and non-medical needs which may impact their capacity to provide care; 2) advise clinical teams to communicate truthfully about prognosis and likely outcomes when creating post-hospital plans of care; 3) encourage caregivers to identify and engage services early in the transition; 4) urge caregivers to draw on multiple sources for social support. Findings can help optimize the CARE Act implementation, particularly in states with large rural populations.

To be effective, nurse care coordination must be targeted at individuals who will use the service. The purpose of this study was to identify variables that predicted use of care coordination by primary care patients. Data on the potential predictor variables were obtained from patient interviews, the electronic health record, and an administrative database of 178 adults eligible for care coordination. Use of care coordination was obtained from an administrative database. A multivariable logistic regression model was developed using a bootstrap sampling approach. Variables predicting use of care coordination were dependence in both activities of daily living (ADL) and instrumental activities of daily living (IADL; odds ratio [OR] = 5.30, p = .002), independent for ADL but dependent for IADL (OR = 2.68, p = .01), and number of prescription medications (OR = 1.12, p = .002). Consideration of these variables may improve identification of patients to target for care coordination.