Ingram, Cory

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.

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.

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.

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.

Background This study sought to evaluate the 15‐year national utilization, trends, predictors, disparities, and outcomes of palliative care services ( PCS ) use in cardiogenic shock complicating acute myocardial infarction. Methods and Results A retrospective cohort from January 1, 2000 through December 31, 2014 was analyzed using the National Inpatient Sample database. Administrative codes for acute myocardial infarction–cardiogenic shock and PCS were used to identify eligible admissions. The primary outcomes were the frequency, utilization trends, and predictors of PCS . Secondary outcomes included in‐hospital mortality and resources utilization. Multivariable regression and propensity‐matching analyses were used to control for confounding. In this 15‐year period, there were 444 253 acute myocardial infarction–cardiogenic shock admissions, of which 4.5% received PCS . The cohort receiving PCS was older, of white race, female sex, and with higher comorbidity and acute organ failure. The PCS cohort received fewer cardiac procedures, but more noncardiac organ support therapies. Older age, female sex, white race, higher comorbidity, higher socioeconomic status, admission to a larger hospital, and admission after 2008 were independent predictors of PCS use. Use of PCS was independently associated with higher in‐hospital mortality (odds ratio 6.59 [95% CI 6.37–6.83]; P <0.001). The cohort with PCS use had >2‐fold higher in‐hospital mortality, 12‐fold higher use of do‐not‐resuscitate status, lesser in‐hospital resource utilization, and fewer discharges to home. Similar findings were observed in the propensity‐matched cohort. Conclusions PCS use in patients with acute myocardial infarction–cardiogenic shock is low, though there is a trend towards increased adoption. There are significant patient and hospital‐specific disparities in the utilization of PCS .

32 Background: The link between patient concerns and clinical systems delivery is often suboptimal. We developed a case management system for palliative care which transforms the patient’s greatest concerns into actionable clinical pathways. Methods: The system collects patients’ single greatest and second greatest concern plus Quality of Life (QOL) data (pain, fatigue and overall QOL single-items scored 0-10 with 10 representing worst pain/fatigue, or best QOL) and produces a report to guide the physician and patient. The system presents ten “buttons” in a xylophone-like grid: Personal Relationships, Monitoring Health, Emotional Health, Money, Health Behaviors, Medication Troubles, Care Access, Work Worries, Physical Health and Care Planning. We performed a quality improvement study at Mayo Clinic sites. Results: 409 patients participated in at least one survey from 11/04/2015 to 9/22/2016 (620 total surveys). The most common Main Concern was Physical Health 265/620 (43%) followed by Monitoring Health (17%), Medication (8%), and Emotional Health, Money, and Health Behaviors (7% each), Personal Relationships (6%). Future Care Planning, Work, and Care Access/Coordination were rarely chosen ( < 5%). The most common Second greatest concern was Health Behaviors 73/409 (18%) followed by Physical Health (17%). 93/122 (67%) patients changed their greatest concern from baseline to subsequent visits. The mean QOL, fatigue and pain at baseline were 4.8, 6.0 and 4.8 respectively, indicating substantial clinically significant deficits. Post baseline mean scores improved by a maximum of 0.8, 1.1, and 0.9 points respectively, representing clinically meaningful effects. On average it took 8 minutes for patients to use the system. Conclusions: The system was quick and easy to utilize. The personal impact concerns (physical/emotional health, medications) were most often cited as the greatest concern, while care issues were de-emphasized by patients. Patients and physicians praised the system for making visits more efficient and raising issues that otherwise might not have been addressed. This system has the potential to improve patient well-being and clinical outcomes, as well as to reduce burden on clinicians and optimize case management activities.