A qualitative study of the emotional and spiritual needs of Hispanic families in hospice.

BACKGROUND: As the older U.S. population becomes more ethnically diverse, there will be an increased need for culturally sensitive hospice care services. Hispanics often experience multiple barriers to quality end-of-life care services. OBJECTIVE: To address the underlying disparities in the cultural, emotional, and spiritual aspects of hospice care, the objective of the present qualitative study was to examine the emotional and spiritual needs of Hispanic patients' families while in hospice. METHOD: Semistructured in-person interviews were conducted with 29 Hispanic patients' families regarding their perceived experience of the hospice-based emotional and spiritual support received. Demographic information was collected on both the family member and the patient. Interviews were digitally recorded, transcribed, and analyzed using thematic content analysis. RESULTS: Participant narratives fell into five main themes: (1) the influence of Hispanic culture in the relationship with hospice care providers; (2) types of social support received from hospice; (3) barriers to receiving support; (4) lack of health literacy regarding hospice care; and (5) cultural preferences for religious/spiritual support in hospice. SIGNIFICANCE OF RESULTS: Our results provide insight into the specific emotional and spiritual needs of Hispanic families receiving hospice services. Our findings highlight that cultural values play an important role in the hospice care experiences of Hispanic families.

Intellectual Disabilities and Decision Making at End of Life: A Literature Review.

BACKGROUND: Individuals with an intellectual disability are vulnerable to having end-of-life decisions made for them merely due to the presence of a disability. As a result, decisions made by others may not reflect the exact wishes of the individual. METHODS: This review examines literature on individuals with an intellectual disability in making end-of-life decisions from the years 2000 to 2014. A total of 38 articles were found with 12 articles having a direct focus on end-of-life decision making. RESULTS: The emerging themes include the following: (i) assumption of lack of capacity, (ii) inconsistency in evaluating capacity and communication challenges and (iii) third party decisions. CONCLUSIONS: Earlier discussions about end-of-life planning before the diagnosis of a life-limiting illness would be beneficial. Lacking is a consistent approach to determining capacity for individuals with an intellectual disability. The findings from this review provide a foundation for a decision tree in end-of-life decision making for individuals with an intellectual disability.

Socioeconomic Factors Associated With Posthospitalization Hospice Care Settings: A 5-Year Perspective.

Investigating whether socioeconomic characteristics determine if hospice is received at home or in a medical facility is important to examine, considering most patients prefer to die at home. This study relied upon The State Inpatient Data of Nevada. A total of 19 206 discharges were analyzed from the data set between 2009 and 2013. The results indicate that increasingly patients are being discharged to home and overall socioeconomic characteristics appear to have less of an influence over whether hospice is received at home or in a medical facility. Further research on the perspectives of patients would provide insight into whether patients' preferences or socioeconomic characteristics are more influential on where hospice services are received.

Evaluation of hospice care by family members of Hispanic and non-Hispanic patients.

The Hispanic older adult population is increasing rapidly and past research suggests that this demographic group underutilizes hospice services, highlighting the need to improve our understanding of their needs in end of life. This study relied upon information from the family evaluation of hospice care survey provided by 2980 caregivers, 152 of whom cared for a Hispanic patient and 2828 who cared for a non-Hispanic patient. Caregivers of Hispanic patients were more likely to report that hospice was inconsistent with the patient's wishes, and that they received more attention than desired for emotional issues. Caregivers of Hispanic patients were also more likely to express that emotional/spiritual forms of support were insufficient. Similar levels of satisfaction were reported for caregivers of Hispanics and non-Hispanics regarding dignity/respect, information received, care coordination, and overall satisfaction.

Family evaluation of hospice care: Examining direct and indirect associations with overall satisfaction and caregiver confidence.

OBJECTIVE: The Family Evaluation of Hospice Care (FEHC) survey is widely employed by hospices, and several studies have examined this information to help inform and enhance end-of-life services. However, these studies have largely focused on examining relatively straightforward associations between variables and have not tested larger models that could reveal more complex effects. The present study aimed to examine the direct and mediating (i.e., via information/education, patient care, and family support) effects of demographic factors, length of stay, timing of referral, patient symptom severity, location of services, and relationship to caregiver on two outcome variables: overall satisfaction and caregiver confidence. METHOD: Surveys were collected from 3226 participants who had lost a loved one who received hospice services. Structural equation modeling was employed to examine the direct and mediating effects of the independent variables on the two outcomes of interest. RESULTS: Participants reporting on racial minority patients, patients with more symptoms, and those referred too late or too early were the most likely to express some discontentment with hospice services. The information/education these individuals received was the only mediating factor significantly associated with caregiver confidence. More positive perceptions of patient care and information/education were both significantly related to greater overall satisfaction. SIGNIFICANCE OF RESULTS: These findings help to (1) pinpoint those most at risk for being less satisfied with hospice, (2) identify which aspects of care may be most strongly related to overall outcomes, and (3) provide a model for examining complex associations among FEHC variables that may be employed by other researchers.

Associations of race and other socioeconomic factors with post-hospitalization hospice care settings.

OBJECTIVE: To examine patient characteristics post hospitalization between hospice home care and hospice care delivered in a medical facility. DESIGN, SETTING, AND PARTICIPANTS: A total of 3,613 hospital discharges to either hospice delivered at home or in a medical facility. Data was from the 2010 Nevada Hospital Inpatient Data. MAIN OUTCOME MEASURES: Our dependent variable was home-based hospice care and medical facility-based hospice care. Our independent variables included race which was categorized as White, African American, Hispanic/Latino, Asian/Pacific Islander, and other race/ethnicity. Socioeconomic factors were marital status and health insurance. RESULTS: Hispanic patients were more likely to be discharged to home rather than a facility-based hospice (OR 1.39). Single patients and divorced patients were less likely to be discharged to a home-based hospice setting (OR .79, .67). Older patients were more likely to be discharged to a facility-based hospice (OR .91). The presence of anemia, paralysis, neurological disorders and weight loss were negatively associated with home discharge (OR 1.51). Patients with higher charges were less likely to be discharged to home (OR .96). CONCLUSIONS: Race, age, diagnosis and marital status influenced whether patients were discharged to home-based hospice or hospice delivered in a medical facility. These findings will assist hospice in anticipating which setting would be most appropriate for patients. Further research to determine whether patient preferences or characteristics determine hospice setting will be beneficial.

Sadness, anxiety, and experiences with emotional support among veteran and nonveteran patients and their families at the end of life.

BACKGROUND: Although many veterans are progressing into older adulthood and a substantive subset of people who die each year in the United States served in the military, there is limited evidence on the role of military service at the end of life. OBJECTIVE: The objective of the study was to examine differences in caregivers' perceptions of sadness and anxiety at the end of life between veteran and nonveteran patients and levels of contentment with the emotional support provided to the patient and family by hospice staff. METHODS: This cross-sectional study used clinical information from the Family Evaluation of Hospice Care (FEHC) survey administered to caregivers of a patient who received hospice services. The sample in this study included 560 individuals who completed the FEHC survey (from December 2007 to April 2013) after receiving services at a large hospice in an urban southwestern U.S. city. Caregivers responded to questions on the FEHC survey about demographic information, perceptions of the patient's level of sadness/anxiety, and the emotional support the patient and family received from hospice staff. In addition, information regarding veteran status was obtained from patients' medical records. RESULTS: Caregivers of veterans were significantly more likely to report that the patient experienced sadness/anxiety at the end of life, as well as a desire for more emotional support for the family from hospice staff after the death. CONCLUSIONS: Results provide preliminary evidence for veteran status being a risk factor for emotional distress at the end of life, highlighting the possible need for augmented support services for veterans and their families in hospice and palliative care.

Staff perspectives on the provision of end-of-life care in a community residence for older adults with developmental disabilities.

OBJECTIVE: The purpose of the study was to describe the perceptions of community residence (CR) staff who have cared for older adults with developmental disabilities (ADDs) that are at the end of life. DESIGN: This exploratory, descriptive study utilized qualitative methods that involved semistructured interviews with CR staff members. SETTING: The setting was a CR that was also an intermediate care facility (ICF) that provided 24-hour residential treatment for medical and/or behavioral needs. At least one registered nurse was present at all times. A CR with at least one resident who was over the age of 40 and had a diagnosis of a life-limiting illness was chosen. PARTICIPANTS: Participants included three frontline workers, four managers, and one registered nurse. METHODS: In-person interviews included open-ended questions about end-of-life care for older ADDs. Demographics such as age, length of time working with ADDs, and education were analyzed using descriptive statistics. Descriptive statistics were used to analyze demographics such as age, and length of time working with ADDs. Interviews were digitally recorded, transcribed, and analyzed using grounded theory techniques. RESULTS: Four themes illuminated unique elements of the provision of end-of-life care in a CR: (1) influence of relationships, (2) expression of individuality, (3) contribution of hospice, (4) grief and bereavement, and (5) challenges to end-of-life care. CONCLUSION: The results provided insight into the unique needs of older ADDs at the end of life and how this influences their care. Emphasis was also placed on the importance of specialized care that involved collaborations with hospice for older ADDs who remain in a CR at the end of life.

Caring for people with intellectual disabilities and life-limiting illness: merging person-centered planning and patient-centered, family-focused care.

The number of older people with intellectual disabilities (IDs) is increasing in parallel to the lengthening life expectancy of the overall population. Little is known about the needs of older people with IDs who are at life's end. Service providers who offer direct care to people with IDs have begun to develop partnerships with hospice and palliative care specialists to provide focused care that is more specialized for their clients or residents who are approaching the end of life. However, community-based programs utilize different philosophies of care that focus on the daily management of people with IDs compared to programs that focus on care at the end of life. Merging these two approaches to care in community-based residences or community-based programs for people with IDs brings challenges for both types of programs. This article compares person-centered planning and patient-focused, family-centered care and proposes means for merging the two seemingly disparate approaches to care.

Rural-urban differences in end-of-life care: implications for practice.

Most older adults with advanced illnesses express the wish to die at home. Home-based care from home health and hospice agencies makes this possible, but there are great geographic variations in utilization. Interviews and focus groups with key constituents in home health and hospice agencies across the 8-county region of Western New York State were used to explore how rural-urban location and agency type (home health or hospice) influence variations in end-of-life care. Emergent themes were: Rural-Urban Differences (geographic challenges, market forces, and programming issues) and End-of-life Care Issues (macrosocial, mezzosocial, and microsocial factors). Implications for social work practice are discussed.

Comfort measures: a qualitative study of nursing home-based end-of-life care.

OBJECTIVE: To explore how staff recognize that a resident is dying and to present a typology of comfort measures. DESIGN: Exploratory, descriptive study involving qualitative methods and semistructured in-depth interviews with staff members of one nursing home. SETTING: A 120-bed nursing home that is part of a continuum of care from independent living, to residential care, rehabilitation, intermediate, dementia and skilled care. PARTICIPANTS: Forty-two staff members including administrators, nurses, certified nursing assistants (CNAs), social workers, and housekeepers. METHODS: On-site interviews were guided by a semistructured instrument that included open-ended questions such as, "How does care change when a resident is dying?" The interview also included questions about education, professional experience, and the frequency with which participants provide end-of-life care. Interviews were audiotape recorded, transcribed, and analyzed using grounded theory techniques. Descriptive statistics were used to provide demographic data. RESULTS: Nursing home staff members identified physical, behavioral, and social indicators of an approaching death. Comfort care is the interrelationship between: (1) symptom management (e.g., pain, dyspnea, anorexia, and dry mouth), (2) family care (e.g. emotional support, death education), (3) interpersonal relationships (e.g., with residents, family) and, (4) complementarity between interdisciplinary roles. Comfort care is holistic and person-centered focusing on the interrelationship between physical, psychosocial, and spiritual issues. CONCLUSION: The terms comfort measures and comfort care are widely used in nursing homes but definitions and modes of delivery vary. In-depth exploration can be utilized to compare of current and existing practices and contribute knowledge about whether palliative care is provided in nursing homes and if so, how. Ultimately program comparisons can lead to improvements in nursing home-based end-of-life care and standards for the delivery of palliative care in this setting.