Reconnecting: Strategies for Supporting Isolated Older Adults during COVID-19 through Tele-palliative Care.

The COVID-19 pandemic has resulted in unprecedented levels of social isolation which has negatively impacted older patients in particular on multiple levels. We present a case of an older patient with several complex psychosocial issues who was hospitalized and died from COVID-19. The social isolation required during the pandemic compounded patient and family stressors and diminished the patient's access to clinicians and to his usual support network and coping strategies. We describe how technology and tele-palliative care were utilized to reconnect the patient with clinicians and family and to provide clinical care that enhanced coping skills and support. Using telemedicine to restructure the approach to care was crucial in improving multiple domains of care and can be considered a resource for caring for older adults, especially during the challenging times brought on by the COVID-19 pandemic.

Improving Transitions in Care for Patients and Family Caregivers Living in Rural and Underserved Areas: The Caregiver Advise, Record, Enable (CARE) Act.

In this Perspective, we contend bold action is needed to improve transitions from hospitals to home for aging patients and their family caregivers living in rural and underserved areas. The Caregiver Advise, Record, Enable (CARE) Act, passed in over 40 US states, is intended to provide family caregivers of hospitalized patients with the knowledge and skills needed for safe and efficient transitions. It has broken important ground for family caregivers who assist with transitions in patient care. It may fall short, however, in addressing the unique needs of family caregivers living in rural and underserved areas. We contend that to realize the intended safety, cost, and care quality benefits of the CARE Act, especially for those living in rural and underserved areas, states need to expand the Act's scope. We provide three recommendations: 1) modify hospital information systems to support the care provided by family caregivers; 2) require assessments of family caregivers that reflect the challenges of family caregiving in rural and underserved areas; and 3) identify local resources to improve discharge planning. We describe the rationale for each recommendation and the potential ways that an expanded CARE Act could reduce the risks associated with transitions in care for aging patients.

Key Points:1. Recent state laws aim to support family caregivers of hospitalized patients.2. These laws do not account for the unique needs of rural caregivers.3. Expanding laws to address rural caregiver needs may improve patient outcomes.

The A, B, C, Ds of Opioid Prescribing for People Living with Cancer.

This articles reviews guidelines for safe and effective opioid prescribing by primary care physicians for people living with cancer-related pain. It also offers tips for community clinicians on initiating, titrating and managing opioids for pain management.

The feasibility of using technology to enhance the transition of palliative care for rural patients.

Palliative care services for patients with life-limiting conditions enhance their quality of life. Most palliative care services, however, are located in hospitals with limited transitional care for patients who live in distant locations. The long-term goal of this program of research is to use existing technology for virtual visits to provide transitional care for patients initially hospitalized in an urban setting by a nurse practitioner located closer to patients' homes in distant, rural settings. The purpose of this proof-of-concept study was to determine the resources needed to use the system (efficiency) and the quality of the audio and visual components (effectiveness) to conduct virtual visits between a clinician at an academic center and community-dwelling adults living in rural locations. Guided by the Technology Acceptance Model, a mixed-methods field design was used. Because of the burden of testing technology with patients with life-limiting conditions, the sample included eight healthy adults. Participant satisfaction and perceptions of the ease of using the technology were also measured. Virtual visits were conducted using a 3G-enabled Apple iPad, cellular phone data service, and a Web-based video conference service. Participants and clinicians perceived the technology as easy to use. Observations revealed the importance of the visual cues provided by the technology to enhance communication, engagement, and satisfaction. Findings from this study will inform a subsequent study of technology-enhanced transitional care with palliative care patients.

Transitional Palliative Care for Family Caregivers: Outcomes From a Randomized Controlled Trial.

CONTEXT: Patients receiving inpatient palliative care often face physical and psychological uncertainties during transitions out of the hospital. Family caregivers often take on responsibilities to ensure patient safety, quality of care, and extend palliative care principles, but often without support or training, potentially compromising their health and well-being. OBJECTIVES: This study tested an eight-week intervention using video visits between palliative care nurse interventionists and caregivers to assess changes in caregiver outcomes and patient quality of life. METHODS: This randomized controlled trial, conducted from 2018 to 2022, enrolled adult caregivers in rural or medically underserved areas in Minnesota, Wisconsin, and Iowa. Eligible caregivers included those caring for patients who received inpatient palliative care and transitioned out of the hospital. The intervention group received teaching, guidance, and counseling from a palliative care nurse before and for eight weeks after hospital discharge. The control group received monthly phone calls but no intervention. Caregiver outcomes included changes in depression, burden, and quality of life, and patient quality of life, as reported by the caregiver. RESULTS: Of those consented, 183 completed the intervention, and 184 completed the control arm; 158 participants had complete baseline and eight-week data. In unadjusted analyses, the intervention group and their care recipients showed statistically significant improvements in quality of life compared to the control group. Improvements persisted in adjusted analyses, and depression significantly improved. No differences in caregiver burden were observed. CONCLUSION: Addressing rural caregivers' needs during transitions in care can enhance caregiver outcomes and improve patient quality of life.

Caregiver recruitment strategies for interventions designed to optimize transitions from hospital to home: lessons from a randomized trial.

Challenges to recruitment of family caregivers exist and are amplified when consent must occur in the context of chaotic healthcare circumstances, such as the transition from hospital to home. The onset of the COVID-19 pandemic during our randomized controlled trial provided an opportunity for a natural experiment exploring and examining different consent processes for caregiver recruitment. The purpose of this publication is to describe different recruitment processes (in-person versus virtual) and compare diversity in recruitment rates in the context of a care recipient's hospitalization. We found rates of family caregiver recruitment for in-person versus virtual were 28% and 23%, respectively (p = 0.01). Differences existed across groups with family caregivers recruited virtually being more likely to be younger, white, have greater than high school education, and not be a spouse or significant other to the care recipient, such as a child. Future work is still needed to identify the modality and timing of family caregiver recruitment to maximize rates and enhance the representativeness of the population for equitable impact.

Economic Value of Unpaid Family Caregiver Time Following Hospital Discharge and at End of Life.

CONTEXT: Family caregivers (FCGs) play a crucial role in care for people with serious illness, yet unpaid care is often overlooked in estimates of care recipient (CR) care costs. OBJECTIVES: This study quantifies the economic value of unpaid caregiving by FCGs between hospital discharge and end of life. METHODS: Trial participants were rural FCGs of CRs receiving palliative care during hospitalization. Caregiving hours were self-reported by FCGs over six months following hospital discharge. Economic value was assigned to hours based on wage data from the United States Bureau of Labor Statistics. Time was valued using 1) home health aide wages (proxy cost), 2) median national wage by FCG sex and education level (opportunity cost), 3) opportunity cost if employed and proxy cost otherwise (combination cost). RESULTS: Of 282 FCGs, 94% were non-Hispanic White, 71% were female, 71% had a college degree, and 51% were in the workforce. FCGs of decedents (58%) compared to survivors reported significantly more caregiving hours per person-month (392 vs. 272), resulting in higher estimated economic value per person-month using opportunity ($12,653 vs. $8843), proxy ($5689 vs. $3955), and combined costing methods ($9490 vs. $6443) CONCLUSION: This study informs more complete economic evaluations of palliative care by estimating the economic value of unpaid caregiving. The high intensity of unpaid caregiving for people with serious illness, especially toward the end of life, should be considered when designing policies and interventions to support FCGs. Better methods for approximating economic value are needed to address potential inequities in current valuation approaches.

Healthcare use and out-of-pocket costs for rural family caregivers and care recipients in a randomized controlled trial.

BACKGROUND: Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out-of-pocket spending for both FCGs and CRs. METHODS: TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self-reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out-of-pocket healthcare spending (e.g., deductibles and coinsurance), and health-related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions. RESULTS: The study included 282 FCG-CR dyads across three U.S. states. Follow-up over the 6-month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56-0. 99). Total out-of-pocket spending was not significantly different for TPC versus control. Across both groups, mean out-of-pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56-0.89). CONCLUSIONS: This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out-of-pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. CLINICALTRIALS: gov # is NCT03339271.

The impact of internet connectivity when conducting a virtual clinical trial with participants living in rural areas.

Aim: The purpose of this secondary analysis was to describe issues related to internet connections during a virtual randomized clinical trial (v-RCT) that included family caregiver participants living in rural areas. Background: Success of v-RCTs depends on reliable, high-quality internet access, which can be problematic in rural areas. Methods: Interventionists documented connectivity issues and corrections made to address connectivity in a narrative note after each virtual visit with family caregivers enrolled in a v-RCT. Notes were reviewed for descriptions of the internet connection during the visit and then coded into those with and without connectivity problems. Two investigators reviewed notes and codes to assure reliability. Discrepancies in codes were discussed or arbitrated by a third investigator until consensus was reached. Analysis was completed using descriptive statistics. Results: Of the 1003 visits reviewed, only 11 % of visits (115/1003) contained a documented problem with internet connectivity. Visits with documented connectivity problems were experienced by 27 % of participants (58/215). However, 60 % (35/58) of participants with a documented issue had a problem with only one visit. None of the participants withdrew from the v-RCT due to problems with their internet connections. Conclusions: The findings support the effective use of virtual visits in research involving participants living in rural locations. V-RCTs provide a strategy that enables participation for individuals who may not otherwise have access to clinical trials conducted in-person in urban settings. Utilizing internet access to connect with and support people who live in rural areas is critically needed to advance clinical research.

Implementation Costs of Technology-Enhanced Transitional Palliative Care for Rural Caregivers.

OBJECTIVES: Compared to urban family caregivers (FCG), rural FCG experience greater burdens accessing coordinated care for their loved ones during and after hospitalization. The impact of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being evaluated in a randomized control trial. This study evaluates resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms. METHODS: Rural caregivers of hospitalized patients were randomized into an 8-week intervention consisting of video visits conducted by a registered nurse certified in palliative care, supplemented with phone calls and texts (n = 215), or attentional control. Labor costs were estimated for a registered nurse and compared to scenario analyses using a nurse practitioner or social worker wages. Medicare reimbursement scenarios included Transitional Care Management (TCM) and Chronic Care Management (CCM) CPT codes. RESULTS: In the base case, TPC cost was $395 per FCG facilitated by a registered nurse, compared to $337 and $585 if facilitated by a social worker or nurse practitioner, respectively. Mean Medicare reimbursement in the TCM-only scenario was $322 and $260 for high or moderate complexity patients, respectively. Reimbursement in the CCM only scenario was $348 and $274 for complex and non-complex patients, respectively. Reimbursement in the TCM+CCM scenario was $496 and $397, for high/complex and moderate/non-complex patients, respectively. CONCLUSION: TPC is a feasible, low cost and sustainable strategy to enhance FCG support in rural areas. Potential reimbursement mechanisms are available to offset the costs to the health system for providing transitional palliative care to caregivers of patients recently hospitalized.

Teaching Palliative Care to Emergency Medicine Residents Using Gamified Deliberate Practice-Based Simulation: Palliative Gaming Simulation Study.

BACKGROUND: Emergency departments (EDs) care for many patients nearing the end of life with advanced serious illnesses. Simulation training offers an opportunity to teach physicians the interpersonal skills required to manage end-of-life care. OBJECTIVE: We hypothesized a gaming simulation of an imminently dying patient using the LIVE. DIE. REPEAT (LDR) format, would be perceived as an effective method to teach end-of-life communication and palliative care management skills. METHODS: This was a gaming simulation replicating the experience of caring for a dying patient with advanced serious illness in the ED. The scenario involved a patient with pancreatic cancer presenting with sepsis and respiratory distress, with a previously established goal of comfort care. The gaming simulation game was divided into 4 stages, and at each level, learners were tasked with completing 1 critical action. The gaming simulation was designed using the LDR serious game scheme in which learners are allowed infinite opportunities to progress through defined stages depicting a single patient scenario. If learners successfully complete the predetermined critical actions of each stage, the game is paused, and there is a debriefing to reinforce knowledge or skills before progressing to the next stage of the gaming simulation. Conversely, if learners do not achieve the critical actions, the game is over, and learners undergo debriefing before repeating the failed stage with an immediate transition into the next. We used the Simulation Effectiveness Tool-Modified survey to evaluate perceived effectiveness in teaching end-of-life management. RESULTS: Eighty percent (16/20) of residents completed the Simulation Effectiveness Tool-Modified survey, and nearly 100% (20/20) either strongly or somewhat agreed that the gaming simulation improved their skills and confidence at the end of life in the following dimensions: (1) better prepared to respond to changes in condition, (2) more confident in assessment skills, (3) teaching patients, (4) reporting to the health care team, (5) empowered to make clinical decisions, and (6) able to prioritize care and interventions. All residents felt the debriefing contributed to learning and provided opportunities to self-reflect. All strongly or somewhat agree that they felt better prepared to respond to changes in the patient's condition, had a better understanding of pathophysiology, were more confident on their assessment skills, and had a better understanding of the medications and therapies after the gaming simulation. A total of 88% (14/16) of them feel more empowered to make clinical decisions. After completing the gaming simulation, 88% (14/16) of residents strongly agreed that they would feel more confident communicating with a patient and prioritizing care interventions in this context. CONCLUSIONS: This palliative gaming simulation using the LDR format was perceived by resident physicians to improve confidence in end-of-life communication and palliative care management.

A Methodological Approach for Documenting Multi-Component Interventions Targeting Family 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.

Dignity Conserving Therapy: An Intervention for Addressing Psychosocial and Existential Distress in Patients with Serious Illness.

Patients with serious illnesses may experience existential and psychosocial distress contributing to their pain and suffering. Addressing existential distress is challenging and may require a multidisciplinary approach. Often, providers feel uncomfortable or ill equipped to care for patients suffering from this distress. In the sample case, the patient has a life-limiting disease and is concerned about his family forgetting him, experiencing loss of dignity and narrative foreclosure. Loss of dignity is sensing hopelessness and worthlessness and a loss of self-determination. Narrative foreclosure is the premature conviction that one's life story has effectively ended. Beneficial interventions include meaning-centered psychotherapy and dignity therapy (DT). Both have an underlying theme of attempting to reverse the narrative foreclosure for patients with serious illnesses and maintain a sense of meaning in life. In addition, patients can be referred to palliative care to enhance coping and decrease depressive symptoms. Dr. Harvey Chochinov has outlined a framework that clinicians can use to care for their patients in a compassionate manner to specifically combat meaninglessness. In DT, a generativity document is created for the patient and their loved ones as part of the treatment along with the opportunity to answer the dignity conserving question. Success of this route of intervention includes greater will to live, reductions in stress, and benefits perceived by family. This article aims to give a framework to treat patients with serious illnesses experiencing psychosocial and/or existential distress.

Deprescribing in Hospice Patients: Discontinuing Aspirin, Multivitamins, and Statins.

OBJECTIVE: To facilitate deprescribing of aspirin, multivitamins, and statins in hospice patients enrolled in Mayo Clinic Hospice, Rochester, Minnesota. PATIENTS AND METHODS: During the fall of 2019, we conducted a quality improvement project to improve care of Mayo Clinic Hospice patients by decreasing the percentage of patients taking aspirin, multivitamins, or statins. Project interventions included the addition of a palliative medicine fellow to the hospice interdisciplinary team, nurse education, and implementation of an evidence-based deprescribing resource tool. The resource tool included a communication framework to guide deprescribing conversations and a literature summary supporting deprescribing. The project team recorded the number of patients taking 1 of these medications by intermittently surveying the hospice census. Process and counterbalance measures were tracked with online surveys of hospice nursing staff. RESULTS: At the start of the project, 22 of 69 patients (32%) were taking aspirin, a multivitamin, or a statin. After introduction of the deprescribing resource tool and the addition of a palliative medicine fellow to the interdisciplinary team, this was reduced to 20 of 83 patients (24%), a 24% decrease. Results appeared to be driven primarily by a reduction in multivitamin use (33% decrease). Self-reported comfort and knowledge about deprescribing improved among the hospice nursing staff, as did satisfaction in their workflow from 5.4 to 6.0 (maximum, 7). CONCLUSION: The addition of a dedicated team member to address medication issues and provision of an evidence-based deprescribing resource tool appear to reduce the use of unnecessary and potentially harmful medications in ambulatory hospice patients.

Hope.

This poem focuses on a mother's love and pregnancy. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: study protocol for a randomized controlled trial.

BACKGROUND: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs' health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers' health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention's effect. METHODS: The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. DISCUSSION: This study addresses 2 independent yet interrelated health care foci-transitional care and palliative care-by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. TRIAL REGISTRATION: ClinicalTrials.gov NCT03339271 . Registered on 13 November 2017. Protocol version: 11.

Let There Be PEACE: Improving Continuous Symptom Monitoring in Hospice Patients.

OBJECTIVE: To ensure that a standardized method of continuous symptom monitoring was available to hospice patients enrolled at our institution. PATIENTS AND METHODS: The Palliative/End-of-Life/Assessment/Care Coordination/Evidence-Based Program (PEACE) seeks to enhance the provision of hospice care through symptom control and patient support. We conducted a quality improvement initiative between November 1, 2015, and March 31, 2017, following Define-Measure-Analyze-Improve-Control methodology to improve hospice care at a rural hospice. The gap in our current hospice model was a standardized method of continuous symptom monitoring. We aimed to explore ways in which technology-assisted care coordination could enhance end-of-life and hospice care. We measured continuous symptom assessments through co-developed condition management protocols (CMPs), technology-assisted care pathways (TACPs), nursing visits, length of stay, respite days, and satisfaction survey data from patients, caregivers, and hospice staff. At baseline, no continuous symptom monitoring was being performed. Baseline data for our enrolled population was compared with data from patients who were eligible, but opted out. RESULTS: We monitored 50 patients using CMP and TACP. The mean ± SD number of skilled nursing visits per patient in the enrolled population compared with those who were eligible but opted out was 13.7±7.6 vs 14.2±10.5, respectively. In response to the survey question, "Because of the overall program, I felt supported and confident at home," 74% (37 of 50) of patients and caregivers answered, "always." CONCLUSION: PEACE enhanced hospice care through symptom control and patient support through CMP and TACP. PEACE is a unique and feasible care platform for hospice patients, with high patient and caregiver satisfaction.

Hearing and Heeding the Voices of those With Advanced Illnesses.

OBJECTIVES: To describe the feasibility of a chaplain-led spiritually focused life review interview and the development of a spiritual legacy document (SLD) for patients with advanced diseases and to describe changes in spiritual well-being (SWB), spiritual coping strategies (SC), and quality of life (QOL) after receiving the SLD. PATIENTS AND METHODS: In all, 130 patients and support person (SP) pairs were recruited from July 2012 to January 2019. Following enrollment, demographic information was gathered and baseline questionnaires were administered. Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12) and a linear analog scale assessment (LASA) measured SWB. LASAs also measured QOL and emotional well-being (EWB). Positive Religious Coping Scale (RCOPE) measured SC. After completion of baseline forms, participants were interviewed (individually) by a chaplain. Interviews were digitally recorded, transcribed, and verified. Transcripts were edited and participants were given the opportunity to make adaptations. The participant-approved draft was then developed into a professionally printed SLD. Follow-up questionnaires were administered to assess change. RESULTS: Significant improvements from baseline to post-SLD follow-up were found for patients on the LASAs: SWB (average 7.7-8.3, P = .01), QOL (average 6.7-7.3, P = .03), EWB (average 6.9-7.5, P = .01), and on the positive RCOPE (average 1.8-2.0, P = .007). Effect sizes were approximately 0.25. Considering any improvement, 61.0% improved their positive RCOPE score, 46.6% improved EWB, and 39.7% improved SWB. No significant changes were found on the FACIT-Sp-12. No significant changes were found for SPs. CONCLUSION: The results suggest that the primary participants who completed the study benefited by significantly increasing their QOL, SWB, EWB, and SC.