A communication intervention to improve prognostic understanding and engagement in advance care planning among diverse advanced cancer patient-caregiver dyads: A pilot study.

OBJECTIVES: Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient-caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers. METHODS: Patients with advanced cancer and their caregivers (n = 22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP. RESULTS: TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives. SIGNIFICANCE OF RESULTS: TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.

The relationship of caregiver self-efficacy to caregiver outcomes: a correlation and mediation analysis.

OBJECTIVES: Caregivers of individuals with Alzheimer's disease and related dementias experience significant burden and adverse outcomes. Enhancing caregiver self-efficacy has the potential to mitigate these negative impacts, yet little is known about its relationship with other aspects of caregiving. This study examined the relationship between self-efficacy and outcomes; identified factors associated with self-efficacy; examined the mediating role of self-efficacy; and analyzed whether there were racial/ethnic differences. METHODS: Data from caregivers (N = 243) were collected from the Caring for the Caregiver Network study. Participants' level of self-efficacy, depression, burden, and positive aspects of caregiving was assessed using validated measures. RESULTS: Two self-efficacy subscales predicted caregiver depression, burden, and positive aspects of caregiving. Being White, a spouse, or having a larger social network predicted lower self-efficacy for obtaining respite. Higher income and lower preparedness predicted lower self-efficacy for controlling upsetting thoughts and responding to disruptive behaviors. Self-efficacy for controlling upsetting thoughts mediated the relationship between preparedness and depression along with the relationship between preparedness and burden. Race/ethnicity did not improve model fit. CONCLUSION: Self-efficacy plays an important role in caregiver outcomes. These findings indicate that strategies to improve caregiver self-efficacy should be an integral component of caregiver interventions.

Addressing sexual health in geriatrics education.

Adults remain sexually active well into later life, but few report discussing sexual health with a physician after age 50. The authors explored how geriatrics education might better address sexual health in the context of a psychosocial conference for geriatrics fellows, program directors, and faculty comprising an informational plenary, which included a skills-building presentation on taking sexual histories, and a program director/faculty roundtable. Although informed about older adult sexual health, knowledge scores of geriatrics fellows increased following the plenary. Fellows reported inconsistent sexual history taking with older adults and noted patient differences in age and gender as barriers. The roundtable discussion highlighted several barriers to inclusion of sexual health content in geriatrics curricula including competing competencies, lack of educational materials, and discomfort with this topic on the part of faculty. Implications of these findings for geriatrics training and education programs and suggestions for improving this domain of geriatrics education are discussed.

Mobile health technology and home hospice care: promise and pitfalls.

With the increasing use of mobile devices (e.g., smart phones, tablets) in our everyday lives, people have the ability to communicate and share information faster than ever before. This has led to the development of promising applications aimed at improving health and healthcare delivery for those with limited access. Hospice care, which is commonly provided at home, may particularly benefit from the use of this technology platform. This commentary outlines several potential benefits and pitfalls of incorporating mobile health (mHealth) applications into existing home hospice care while highlighting some of the relevant telemedicine work being done in the palliative and End-of-Life care fields.

Non-Necrotizing Streptococcal Cellulitis as a Cause of Acute, Atraumatic Compartment Syndrome of the Foot: A Case Report.

Acute compartment syndrome is widely accepted as a surgical emergency. Most cases of acute compartment syndrome occur after high-energy trauma, especially crush injuries. We present a unique case of acute, atraumatic compartment syndrome of the foot associated with infectious cellulitis. A 53-year-old male, with a medical history significant for human immunodeficiency virus, presented to the emergency department secondary to an insidious onset of intense foot pain, swelling, and an inability to bear weight on the affected extremity. He had no history of recent trauma. He was admitted to the hospital because of a suspected infection and subsequently was given intravenous antibiotics. During the admission, he developed a severe infection, and blood cultures demonstrated growth of group A streptococcus. No abscess or hematoma was identified on magnetic resonance imaging or during exploratory surgery. The findings from intraoperative cultures were negative. Despite proper medical care for his infection, the lower extremity pain worsened; therefore, compartmental pressures were obtained at the bedside. Multiple compartment pressures were measured and were >40 mm Hg. Compartment syndrome was diagnosed, and the patient was taken to the operating room for emergent fasciotomies. Surgical release of the medial, lateral, interosseous, and adductor compartments revealed copious amounts of serosanguinous drainage. Again, no definitive hematoma or purulence was identified. The patient's symptoms resolved after the fasciotomies, and he healed uneventfully. Our case highlights the need to consider acute compartment syndrome in the differential diagnosis for pain out of proportion to the clinical situation, even when a traditional etiology is absent.

Identifying Key Priorities for Future Palliative Care Research Using an Innovative Analytic Approach.

Using an innovative approach, we identified research priorities in palliative care to guide future research initiatives. We searched 7 databases (2005-2012) for review articles published on the topics of palliative and hospice-end-of-life care. The identified research recommendations (n = 648) fell into 2 distinct categories: (1) ways to improve methodological approaches and (2) specific topic areas in need of future study. The most commonly cited priority within the theme of methodological approaches was the need for enhanced rigor. Specific topics in need of future study included perspectives and needs of patients, relatives, and providers; underrepresented populations; decision-making; cost-effectiveness; provider education; spirituality; service use; and interdisciplinary approaches to delivering palliative care. This review underscores the need for additional research on specific topics and methodologically rigorous research to inform health policy and practice.

Caregiver burden: a clinical review.

IMPORTANCE: Caregiver burden may result from providing care for patients with chronic illness. It can occur in any of the 43.5 million individuals providing support to midlife and older adults. Caregiver burden is frequently overlooked by clinicians. OBJECTIVES: To outline the epidemiology of caregiver burden; to provide strategies to diagnose, assess, and intervene for caregiver burden in clinical practice; and to evaluate evidence on interventions intended to avert or mitigate caregiver burden and related caregiver distress. EVIDENCE: Cohort studies examining the relation between demographic and social risk factors and adverse outcomes of caregiver burden were reviewed. Review of recent meta-analyses to summarize the effectiveness of caregiver burden interventions were identified by searching Ovid MEDLINE, AgeLine, and the Cochrane Library. RESULTS: Risk factors for caregiver burden include female sex, low educational attainment, residence with the care recipient, higher number of hours spent caregiving, depression, social isolation, financial stress, and lack of choice in being a caregiver. Practical assessment strategies for caregiver burden exist to evaluate caregivers, their care recipients, and the care recipient's overall caregiving needs. A variety of psychosocial and pharmacological interventions have shown mild to modest efficacy in mitigating caregiver burden and associated manifestations of caregiver distress in high-quality meta-analyses. Psychosocial interventions include support groups or psychoeducational interventions for caregivers of dementia patients (effect size, 0.09-0.23). Pharmacologic interventions include use of anticholinergics or antipsychotic medications for dementia or dementia-related behaviors in the care recipient (effect size, 0.18-0.27). Many studies showed improvements in caregiver burden-associated symptoms (eg, mood, coping, self-efficacy) even when caregiver burden itself was minimally improved. CONCLUSIONS AND RELEVANCE: Physicians have a responsibility to recognize caregiver burden. Caregiver assessment and intervention should be tailored to the individual circumstances and contexts in which caregiver burden occurs.

Assessing the feasibility, acceptability, and preliminary efficacy of a novel symptom management care delivery intervention for caregivers receiving home hospice care: The I-HoME protocol.

BACKGROUND: Terminally ill patients experience high symptom burden at the end of life (EoL), even when receiving hospice care. In the U.S., family caregivers play a critical role in managing symptoms experienced by patients receiving home hospice services. Yet, most caregivers don't receive sufficient support or formal training in symptom management. Therefore, providing additional visits and education to caregivers could potentially improve outcomes for both patient and caregiver. In response, we developed the Improving Home hospice Management of End-of-life issues through technology (I-HoME) intervention, a program designed for family caregivers of home hospice patients. This paper describes the intervention, study design, and protocol used to evaluate the intervention. METHODS: The I-HoME study is a pilot randomized controlled trial aimed at reducing patient symptom burden through weekly tele-visits and education videos to benefit the patient's family caregiver. One hundred caregivers will be randomized to hospice care with (n = 50) or without (n = 50) the I-HoME intervention. Primary outcomes include intervention feasibility (e.g., accrual, attrition, use of the intervention) and acceptability (e.g., caregivers' comfort accessing the tele-visits and satisfaction). We will also examine preliminary efficacy using validated patient symptom burden and caregiver outcome measures (i.e., burden, depression, anxiety, satisfaction). CONCLUSION: The trial is evaluating a novel symptom management intervention that supports caregivers of patients receiving home hospice services. The intervention employs a multi-pronged approach that provides needed services at a time when close contact and support is crucial. This research could lead to advances in how care gets delivered in the home hospice setting.

Interventions for Family Caregivers of Patients Receiving Palliative/Hospice Care at Home: A Scoping Review.

There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.

Pilot Testing Educational Videos for Black Caregivers Receiving Home Hospice Care.

Black caregivers face distinct challenges in symptom management when providing end-of-life care. Educational interventions may improve caregiver preparedness and competency by providing information on symptom management. This study pilot tested 4 culturally tailored caregiver educational videos about symptom management for Black caregivers receiving home hospice care at a large, urban, nonprofit hospice organization to determine feasibility and acceptability, along with their potential impact on caregiver outcomes. All participants (N = 10) agreed to watch the 4 videos and found the videos to be helpful; 90% (n = 9) shared that they would recommend them to other Black caregivers receiving home hospice care. Total preparedness scores increased from a mean score of 23.5 preintervention to 28.3 postintervention. Caregiver competency scores increased from 13.8 at preintervention to 14.3 at postintervention. Caregivers' comfort and knowledge scores increased from preintervention to postintervention for all 7 end-of-life topics presented in the 4 videos. This study found that it was feasible and acceptable to show Black caregivers culturally tailored educational videos related to issues regarding symptom management. Many found the videos to be helpful and the topics to be relatable. There were trends toward improvement in preparedness and competency. Future studies examining efficacy are needed to determine the impact of this intervention.

Understanding the Behavioral Health Needs of Hospice Patients and Their Family Caregivers: Perspectives of Hospice Medical Directors.

BACKGROUND: Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice. OBJECTIVE: To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers. METHODS: Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis. RESULTS: Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges. CONCLUSION: HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care.

CONTEXT: Informal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment. OBJECTIVES: This study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers' experiences around symptom management, cultural, and religious challenges during home hospice care. METHODS: Data from small group discussions with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed. RESULTS: Caregivers struggled most with managing patients' pain, lack of appetite, and decline near end of life (EoL). Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was a concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience. CONCLUSION: Our results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around end of life symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers' existing religious networks. Future qualitative and quantitative studies should examine the clinical implications of these results in terms of patient, caregiver, and hospice outcomes.

Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors.

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants' responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient's terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient's needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs' expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

Healthcare Provider Perspectives Regarding Use of Medical Interpreters During End-of-Life Conversations With Limited English Proficient Patients.

BACKGROUND: Healthcare providers increasingly care for patients with Limited English Proficiency (LEP). There is limited research evaluating healthcare provider utilization practices, attitudes, perceived benefits and barriers regarding the use of medical interpreters in end of life (EOL) and goals of care (GOC) conversations. OBJECTIVES: To elicit healthcare providers' opinions of the role, factors that impact decisions to use medical interpreters and perceived utility of using medical interpreters when conducting EOL and GOC conversations with LEP patients and their families. DESIGN: Cross-sectional survey of internal medicine trainees and attending physicians from a U.S. medical center. RESULTS: A total of 117 surveys were collected with a response rate of 51%. In-person medical interpreters received higher ratings with regard to their helpfulness compared to telephone medical interpreters during EOL and GOC conversations. Being an attending physician and having received training in the use of a medical interpreter predicted higher composite scores reflecting greater awareness of the roles of medical interpreters and endorsement of best communication practices. In-person interpreters were viewed by a subset of participants as "standard of care" during EOL and GOC conversations. CONCLUSION: Having more years in practice and receiving training in the use of medical interpreters correlated with more favorable attitudes toward the role of medical interpreters and positive communication practices. Incorporating early training in the use of medical interpreters could help enhance communication practices and outcomes during EOL and GOC conversations with LEP patients.

Building psychosocial programming in geriatrics fellowships: a consortium model.

Geriatric psychosocial problems are prevalent and significantly affect the physical health and overall well-being of older adults. Geriatrics fellows require psychosocial education, and yet to date, geriatrics fellowship programs have not developed a comprehensive geriatric psychosocial curriculum. Fellowship programs in the New York tristate area collaboratively created the New York Metropolitan Area Consortium to Strengthen Psychosocial Programming in Geriatrics Fellowships in 2007 to address this shortfall. The goal of the Consortium is to develop model educational programs for geriatrics fellows that highlight psychosocial issues affecting elder care, share interinstitutional resources, and energize fellowship program directors and faculty. In 2008, 2009, and 2010, Consortium faculty collaboratively designed and implemented a psychosocial educational conference for geriatrics fellows. Cumulative participation at the conferences included 146 geriatrics fellows from 20 academic institutions taught by interdisciplinary Consortium faculty. Formal evaluations from the participants indicated that the conference: a) positively affected fellows' knowledge of, interest in, and comfort with psychosocial issues; b) would have a positive impact on the quality of care provided to older patients; and c) encouraged valuable interactions with fellows and faculty from other institutions. The Consortium, as an educational model for psychosocial learning, has a positive impact on geriatrics fellowship training and may be replicable in other localities.

Challenges and approaches to involving family caregivers in primary care.

OBJECTIVE: Older adults are commonly accompanied to routine medical visits. This study identifies challenges and explores approaches to managing patient-family interactions in primary care. METHODS: Semi-structured interviews were conducted with primary care clinicians and staff (N = 30) as well as older adult patients and family caregivers (N = 40). Interviews were analyzed using content analysis. RESULTS: Three major challenges to patient-family interactions were identified: navigating patient autonomy and family motivation to participate; adjudicating patient-family disagreements; and minimizing obtrusive behaviors by caregivers. Three approaches to managing patient-family interactions were identified. Collaborating involved non-judgmental listening, consensus-building, and validation of different perspectives. Dividing involved separating the patient and family member to elicit confidential information from one member of the dyad. Focusing involved re-directing the conversation to either the patient or family member while minimizing input from the other. Approaches varied by patients' cognitive status and overall health condition. In general, patients and caregivers expressed the most positive attitudes toward collaborating and patient-directed focusing approaches. CONCLUSION: Primary care clinicians use varied approaches to managing their interactions with patient-family dyads. Patients and caregivers generally prefer those approaches that involve collaborative rather than individual discussions. PRACTICE IMPLICATIONS: Findings suggest the potential for the development of communication-focused interventions to promote positive clinician-patient-family interactions.

Association Between Caregiver Strain and Self-Care Among Caregivers With Diabetes.

Importance: Caregiver strain has been shown to be associated with adverse effects on caregivers' health, particularly among those with cardiovascular disease. Less is known about the association of caregiver strain with health behaviors among caregivers with diabetes, a disease that requires a high degree of self-care. Objective: To examine the association between caregiver strain and diabetes self-care among caregivers with diabetes. Design, Setting, and Participants: This cohort study was conducted between July 13, 2018, and June 25, 2020, using data on 795 US caregivers aged 45 years or older with self-reported diabetes from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, which comprised 30 239 Black and White adults 45 years or older throughout the US enrolled from January 2003 to October 2007. Exposures: Caregiver strain, assessed by self-report in response to the question, "How much of a mental or emotional strain is it to provide this care?" Response options were no strain, some strain, or a lot of (high) strain. Main Outcomes and Measures: Diabetes self-care, which was assessed across 4 domains (Mediterranean diet adherence, physical activity, smoking status, and medication adherence), and a composite self-care score summing performance across these domains. The association between caregiver strain and diabetes self-care was examined with multivariable Poisson regression adjusting for demographic, clinical, physical and mental functioning, and caregiving covariates. Results: Among the 795 caregivers with diabetes included in the study, the mean (SD) age was 63.7 (8.6) years, 469 (59.0%) were women, and 452 (56.9%) were Black individuals. Overall, 146 caregivers (18.4%) reported high caregiver strain. In unadjusted models, high caregiver strain was associated with less physical activity (prevalence ratio [PR], 0.66; 95% CI, 0.45-0.97), low medication adherence (PR, 0.80; 95% CI, 0.68-0.94), and worse self-care (PR, 0.65; 95% CI, 0.44-0.98). In adjusted models, the association between some and high caregiving strain with low medication adherence remained significant (adjusted PR: some strain, 0.88 [95% CI, 0.78-0.99]; high strain, 0.83 [95% CI, 0.69-0.99]). Conclusions and Relevance: In this cohort study of US adult caregivers with diabetes, a high level of strain was associated with low medication adherence. Increased awareness of the prevalence of caregiver strain and potential ramifications on caregivers' self-care appears to be warranted among health care professionals and caregivers.

A Comprehensive Approach to Palliative Care during the Coronavirus Pandemic.

Context: The COVID-19 pandemic resulted in a surge of critically ill patients that strained health care systems throughout New York City in March and April of 2020. At the peak of the crisis, consults for palliative care increased four- to sevenfold at NewYork-Presbyterian (NYP), an academic health care system with 10 campuses throughout New York City. We share our challenges, solutions, and lessons learned to help peer institutions meet increased palliative care demands during future crises and address pre-existing palliative care subspecialist shortages during nonpandemic times. Methods: In response to the increased demand, palliative care physician and administrative leadership at NYP piloted multiple creative care models to expand access to palliative care outpatient and inpatient services. The care models included virtual outpatient management of existing patients, embedded palliative care staff, education for providers, multidisciplinary family support, hospice units (which allowed for family visitation), and team expansion through training other disciplines (primarily psychiatry) and deploying an ePalliative Care service (staffed by out-of-state volunteers). Conclusion: Our comprehensive response successfully expanded the palliative care team's reach, and, at the height of the pandemic, allowed our teams to meet the increased demand for palliative care consults. We learned that flexibility and adaptability were critical to responding to a rapidly evolving crisis. Physician and family feedback and preliminary data suggest that virtual outpatient visits, embedded staff, hospice units, and team expansion through training other disciplines and deploying ePalliative Care services were impactful interventions.