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.

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.

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.

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.

Caregiver-Reported Quality Measures and Their Correlates in Home Hospice Care.

Background: A majority of hospice care is delivered at home, with significant caregiver involvement. Identifying factors associated with caregiver-reported quality measures could help improve hospice care in the United States. Objectives: To identify correlates of caregiver-reported quality measures: burden, satisfaction, and quality of end-of-life (EoL) care in home hospice care. Design: A cross-sectional study was conducted from April 2017 through February 2018. Setting/Subjects: A nonprofit, urban hospice organization. We recruited caregivers whose patients were discharged from home hospice care. Eligible caregiver participants had to be 18 years or older, English-speaking, and listed as a primary caregiver at the time the patient was admitted to hospice. Measures: The (1) short version of the Burden Scale for Family Caregivers; (2) Family Satisfaction with Care; and (3) Caregiver Evaluation of the Quality of End-Of-Life Care. Results: Caregivers (n = 391) had a mean age of 59 years and most were female (n = 297, 76.0%), children of the patient (n = 233, 59.7%), and non-Hispanic White (n = 180, 46.0%). The mean age of home hospice patients was 83 years; a majority had a non-cancer diagnosis (n = 235, 60.1%), were female (n = 250, 63.9%), and were non-Hispanic White (n = 210, 53.7%). Higher symptom scores were significantly associated with greater caregiver burden and lower satisfaction with care; but not lower quality of EoL care. Caregivers who were less comfortable managing patient symptoms during the last week on hospice had higher caregiver burden, lower caregiver satisfaction, and lower ratings of quality of EoL care. Conclusion: Potentially modifiable symptom-related variables were correlated with caregiver-reported quality measures. Our study reinforces the important relationship between the perceived suffering/symptoms of patients and caregivers' hospice experiences.

Identifying the Prevalence and Correlates of Caregiver-Reported Symptoms in Home Hospice Patients at the End of Life.

Background: Symptoms (e.g., pain, shortness of breath, and fatigue) at the end of life (EoL) are common. Although symptoms can contribute to poor quality of life at the EoL, much remains unknown regarding their prevalence and correlates in home hospice care. Objectives: To determine the prevalence and correlates of caregiver-reported symptoms in home hospice patients during the last week before discharge using the Edmonton Symptom Assessment Scale (ESAS). Design: This is a cross-sectional study measuring perceived patient symptoms using caregiver proxy data. Bivariate and multivariate analyses were conducted to examine patient and caregiver characteristics associated with ESAS scores. Setting/Subjects: Subjects were from an urban nonprofit home hospice organization. Measurements: Symptoms were measured using the ESAS. Results: The mean ESAS score was 51.2 (SD ±17.4). In bivariate analyses, higher perceived symptom score was associated with younger patient age (p < 0.001), younger caregiver age (p < 0.001), having a cancer diagnosis (p = 0.006), and lower caregiver comfort level managing symptoms (p < 0.001). Regression model analyses showed that younger patient age (p = 0.0009, p = 0.0036) and lower caregiver comfort level managing symptoms (p = 0.0047, p < 0.0001) were associated uniquely with higher symptom scores. Conclusions: Multiple symptoms of high severity were perceived by caregivers in the last week on home hospice. Patient age and caregiver comfort level in managing symptoms were associated with higher symptom scores. Further work is needed to improve management and treatment of symptoms in this care setting.

Missed Opportunities When Communicating With Limited English-Proficient Patients During End-of-Life Conversations: Insights From Spanish-Speaking and Chinese-Speaking Medical Interpreters.

CONTEXT: Research has shown that using medical interpreters in language-discordant patient-provider encounters improves outcomes. There is limited research evaluating the views of medical interpreters on best interpreter practices when they are used to break bad news or participate in end-of-life (EOL) conversations. OBJECTIVES: To develop insights from medical interpreters about their role when interpreting discussions regarding EOL issues, identify practices interpreters perceive as helping to improve or hinder patient-provider communication, and obtain suggestions on how to improve communication during EOL conversations with Spanish-speaking and Chinese-speaking patients. METHODS: Semistructured interviews were conducted with Spanish or Chinese medical interpreters. Participants were recruited until thematic saturation was reached. Twelve interviews were conducted, audiotape recorded, transcribed, and analyzed using standard qualitative methods. RESULTS: Six major themes were identified: medical interpreters' perceived comfort level during EOL interpretation; perception of interpreter role; communication practices perceived as barriers to effective communication; communication practices felt to facilitate effective communication; concrete recommendations how to best use medical interpreters; and training received/perceived training needs. CONCLUSION: Medical interpreters provide literal interpretation of the spoken word. Because of cultural nuances in Chinese-speaking and Spanish-speaking patients/family members during EOL conversations, medical interpreters can translate the meaning of the message within a specific cultural context. Conducting premeetings and debriefings after the encounter are potentially important strategies to maximize communication during EOL conversations.

Perceptions of a Home Hospice Crisis: An Exploratory Study of Family Caregivers.

Background: Crises that occur in home hospice care affect family caregivers' satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes. Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers. Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined. Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization. Measurements: Participants were asked to identify any crisis-defined as a time of intense distress due to a physical, psychological, and/or spiritual cause-they or the patient experienced, while receiving home hospice care. Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis. Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.

Communication involving special populations: older adults with cancer.

PURPOSE OF REVIEW: Cancer has a high incidence and death rate among older adults. The objective of this article is to summarize current literature about communication between older adults and medical professionals in cancer care. Our article addresses four categories related to communication: first, ageism; second, screening; third, treatment; and fourth, end of life (EoL) care. RECENT FINDINGS: Current literature suggests that cancer treatment for older patients may be influenced by ageist biases. Older patients prefer that clinicians incorporate health status to individualize screening decisions although some patients don't consider life expectancy to be an important factor in screening. Patients often agree with the oncologists' treatment recommendations but want to be involved in the decision-making process. Lastly, work is being conducted to associate quality communication of EoL issues with hospital performance measures. SUMMARY: Patients are at risk of age-based disparities in cancer screening, treatment, and EoL care. Older adults are not a homogenous group and all elderly cancer patients need to have an individualized approach to care. Medical professionals must understand patients' goals and values and involve them in shared decision-making and preparation for EoL.

Home Hospice Caregivers' Perceived Information Needs.

BACKGROUND:: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice. OBJECTIVES:: To identify the information needs of informal home hospice caregivers. DESIGN:: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis). PARTICIPANTS:: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization. MEASURED:: Participants' information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition. RESULTS:: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides. CONCLUSION:: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers.

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.

Mobile Health Technology Is Here-But Are Hospice Informal Caregivers Receptive?

BACKGROUND:: Mobile health applications (mHealth apps) represent a rapidly emerging technology that is being used to improve health-care delivery. In home hospice, informal caregivers play an essential role in attending to the day-to-day needs of their terminally ill loved ones. Using mHealth apps by caregivers in this setting could potentially improve the support provided to both patients and caregivers at the end of life (EoL). OBJECTIVES:: To explore informal caregivers' receptivity and concerns in using mHealth apps along with app features, caregivers perceived to be most useful in home hospice care. DESIGN:: Eighty semistructured phone interviews were conducted with informal caregivers who received care from a nonprofit hospice organization. Study data were analyzed using content analysis, coding for themes of receptivity and interest. RESULTS:: Sixty-two (78%) participants were receptive to using an mHealth app in home hospice care. Informal caregivers were interested in features that addressed: (1) communication to improve patient care (n = 44, 70%), (2) access to patient care information (n = 30, 48%), (3) education (n = 24, 39%), and (4) updates from health-care personnel and scheduling services (n = 10, 16%). CONCLUSIONS:: A substantial majority of informal caregivers voiced receptivity to using mHealth apps and expressed interest in features that enhance communication and provide information to improve patient care. Although more research is needed to examine how to incorporate this technology into existing home hospice care, our study suggests that informal caregivers are likely to use this technology they feel will help enhance home-based EoL care delivery.

Mild cognitive dysfunction of caregivers and its association with care recipients' end-of-life plans and preferences.

Little is known about the association between cognitive dysfunction among informal caregivers and patients' plans and preferences for patients' end of life care. We report on the frequency of cognitive dysfunction among both patients and caregivers and examine associations between caregivers' cognitive screening scores and end of life plans and preferences of patients with advanced cancer. The current sample was derived from a National Cancer Institute- and National Institute of Mental Health-funded study of patients with distant metastasis who had disease progression on at least first-line chemotherapy, and their informal caregivers (n = 550 pairs). The Pfeiffer Short Portable Mental Status, a validated cognitive screen, was administered to patients and caregivers. Patients were interviewed about their end of life plans and preferences. Logistic regression models regressed patients' advance care planning and treatment preferences on caregivers' cognitive screen scores. Patients' cognitive screen scores were included as covariates. Most caregivers (55%) were spouses. Almost 30% of patients scored worse on the cognitive screen than their caregivers and 12% of caregivers scored worse than the patients. For each additional error that caregivers made on the cognitive screen, patients were more likely (AOR = 1.59, p = 0.002) to report that they preferred that everything possible be done to keep them alive and were less likely (AOR = 0.75, p = 0.04) to have a living will or a health care proxy/durable power of attorney. Worse caregiver cognitive screening scores were associated with higher likelihood of patients' reporting that they wanted everything done to save their lives and a lower likelihood of having a living will or other type of advanced care plan. Future studies should confirm these findings in other populations and determine the mechanisms that may underlie the identified relationships.

Examining the Role of Primary Care Physicians and Challenges Faced When Their Patients Transition to Home Hospice Care.

BACKGROUND: The transition into home hospice care is often a critical time in a patient's medical care. Studies have shown patients and caregivers desire continuity with their physicians at the end of life (EoL). However, it is unclear what roles primary care physicians (PCPs) play and what challenges they face caring for patients transitioning into home hospice care. OBJECTIVES: To understand PCPs' experiences, challenges, and preferences when their patients transition to home hospice care. DESIGN: Nineteen semi-structured phone interviews with PCPs were conducted. Study data were analyzed using standard qualitative methods. PARTICIPANTS: Participants included PCPs from 3 academic group practices in New York City. Measured: Physician recordings were transcribed and analyzed using content analysis. RESULTS: Most PCPs noted that there was a discrepancy between their actual role and ideal role when their patients transitioned to home hospice care. Primary care physicians expressed a desire to maintain continuity, provide psychosocial support, and collaborate actively with the hospice team. Better establishment of roles, more frequent communication with the hospice team, and use of technology to communicate with patients were mentioned as possible ways to help PCPs achieve their ideal role caring for their patients receiving home hospice care. CONCLUSIONS: Primary care physicians expressed varying degrees of involvement during a patient's transition to home hospice care, but many desired to be more involved in their patient's care. As with patients, physicians desire to maintain continuity with their patients at the EoL and solutions to improve communication between PCPs, hospice providers, and patients need to be explored.

Awareness and Misperceptions of Hospice and Palliative Care: A Population-Based Survey Study.

BACKGROUND: Despite the documented benefits of palliative and hospice care on improving patients' quality of life, these services remain underutilized. Multiple factors limit the utilization of these services, including patients' and caregivers' lack of knowledge and misperceptions. OBJECTIVES: To examine palliative and hospice care awareness, misperceptions, and receptivity among community-dwelling adults. DESIGN: Cross-sectional study. SUBJECTS: New York State residents ≥18 years old who participated in the 2016 Empire State Poll. OUTCOMES MEASURED: Palliative and hospice care awareness, misperceptions, and receptivity. RESULTS: Of the 800 participants, 664 (83%) and 216 (27%) provided a definition of hospice care and palliative care, respectively. Of those who defined hospice care, 399 (60%) associated it with end-of-life care, 89 (13.4%) mentioned it was comfort care, and 35 (5.3%) reported hospice care provides care to patients and families. Of those who defined palliative care (n = 216), 57 (26.4%) mentioned it provided symptom management to patients, 47 (21.9%) stated it was comfort care, and 19 (8.8%) reported it was applicable in any course of an illness. Of those who defined hospice or palliative care, 248 (37.3%) had a misperception about hospice care and 115 (53.2%) had a misperception about palliative care. CONCLUSIONS: Most community-dwelling adults did not mention the major components of palliative and hospice care in their definitions, implying a low level of awareness of these services, and misinformation is common among community-dwelling adults. Palliative and hospice care education initiatives are needed to both increase awareness of and reduce misperceptions about these services.

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.

Multicomponent Palliative Care Interventions in Advanced Chronic Diseases: A Systematic Review.

BACKGROUND: Many patients live with serious chronic or terminal illnesses. Multicomponent palliative care interventions have been increasingly utilized in patient care; however, it is unclear what is being implemented and who is delivering these interventions. OBJECTIVES: To (1) describe the delivery of multicomponent palliative care interventions, (2) characterize the disciplines delivering care, (3) identify the components being implemented, and (4) analyze whether the number of disciplines or components being implemented are associated with positive outcomes. DESIGN: Systematic review. STUDY SELECTION: English-language articles analyzing multicomponent palliative care interventions. OUTCOMES MEASURED: Delivery of palliative interventions by discipline, components of palliative care implemented, and number of positive outcomes (eg, pain, quality of life). RESULTS: Our search strategy yielded 71 articles, which detailed 64 unique multicomponent palliative care interventions. Nurses (n = 64, 88%) were most often involved in delivering care, followed by physicians (n = 43, 67%), social workers (n = 33, 52%), and chaplains (n = 19, 30%). The most common palliative care components patients received were symptom management (n = 56, 88%), psychological support/counseling (n = 52, 81%), and disease education (n = 48, 75%). Statistical analysis did not uncover an association between number of disciplines or components and positive outcomes. CONCLUSIONS: While there has been growth in multicomponent palliative care interventions over the past 3 decades, important aspects require additional study such as better inclusion of key groups (eg, chronic obstructive pulmonary disease, end-stage renal disease, minorities, older adults); incorporating core components of palliative care (eg, interdisciplinary team, integrating caregivers, providing spiritual support); and developing ways to evaluate the effectiveness of interventions that can be readily replicated and disseminated.