End-of-Life Care Intensity and Hospice Use: A Regional-level Analysis.

OBJECTIVES: Despite increased hospice use over the last decade, end-of-life care intensity continues to increase. To understand this puzzle, we sought to examine regional variation in intensive end-of-life care and determine its associations with hospice use patterns. METHODS: Using Medicare claims for decedents aged 66 years and above in 2011, we assessed end-of-life care intensity in the last 6 months of life across hospital referral regions (HRRs) as measured by proportion of decedents per HRR experiencing hospitalization, emergency department use, intensive care unit (ICU) admission, and number of days spent in hospital (hospital-days) and ICU (ICU-days). Using hierarchical generalized linear models and adjusting for patient characteristics, we examined whether these measures were associated with overall hospice use, very short (≤7 d), medium (8-179 d), or very long (≥180 d) hospice enrollment, focusing on very short stay. RESULTS: End-of-life care intensity and hospice use patterns varied substantially across HRRs. Regional-level end-of-life care intensity was positively correlated with very short hospice enrollment. Comparing HRRs in the highest versus the lowest quintiles of intensity in end-of-life care, regions with more intensive care had higher rates of very short hospice enrollment, with adjusted odds ratios (AOR) 1.14 [99% confidence interval (CI), 1.04-1.25] for hospitalization; AOR, 1.23 (CI, 1.12-1.36) for emergency department use; AOR, 1.25 (CI, 1.14-1.38) for ICU admission; AOR, 1.10 (CI, 1.00-1.21) for hospital-days; and AOR, 1.20 (CI, 1.08-1.32) for ICU-days. CONCLUSIONS: At the regional level, increased end-of-life care intensity was consistently associated with very short hospice use.

Transitions Between Healthcare Settings of Hospice Enrollees at the End of Life.

OBJECTIVES: To characterize the number and types of care transitions in the last 6 months of life of individuals who used hospice and to examine factors associated with having multiple transitions in care. DESIGN: Retrospective cohort study. SETTING: One hundred percent fee-for-service Medicare decedent claims data. PARTICIPANTS: Medicare beneficiaries aged 66 and older who died between July 1, 2011, and December 31, 2011, and were enrolled in hospice at some time during the last 6 months of life. MEASUREMENTS: Hierarchical generalized linear modeling was used to identify individual, hospice, and regional factors associated with transitions. The sequence of transitions across healthcare settings was described. Healthcare transitions after hospice enrollment included from and to the hospital, skilled nursing facility, home health agency program, hospice, or home without receiving any service in these four healthcare settings. RESULTS: Of 311,090 hospice decedents, 31,675 (10.2%) had at least one transition after hospice enrollment, and this varied substantially across the United States; 6.6% of all decedents had more than one transition in care after hospice enrollment (range 2-19 transitions). Of hospice users with transitions, 53.4% were admitted to hospitals, 17.7% were admitted to skilled nursing facilities, 9.6% used home health agencies, and 25.8% had transitions to home without receiving the services from the healthcare settings examined. In adjusted analyses, decedents who were younger, nonwhite, enrolled in a for-profit or small hospice program, or had less access to hospital-based palliative care had significantly higher odds of having at least one transition. CONCLUSION: A notable proportion of hospice users experience at least one transition in care in the last 6 months of life, suggesting that further research on the effect of transitions on users and families is warranted.

Hospice Services for Complicated Grief and Depression: Results from a National Survey.

OBJECTIVES: To describe the prevalence of screening for complicated grief (CG) and depression in hospice and access to bereavement therapy and to examine whether screening and access to therapy varied according to hospice organizational characteristics or staff training and involvement. DESIGN: Cross-sectional national survey conducted from 2008 to 2009. SETTING: United States. PARTICIPANTS: Hospices (N = 591). MEASUREMENTS: Whether hospices screened for depression or CG at the time of death or provided access to bereavement therapy (individual or group). Organizational characteristics included region, chain status, ownership, and patient volume. Staffing-related variables included training length and meeting attendance requirements. RESULTS: Fifty-five percent of hospices provided screening for CG and depression and access to bereavement therapy, 13% provided screening but not access to bereavement therapy, 24% provided access to bereavement therapy but not screening, and 8% neither screened nor provided access to bereavement therapy. Hospices with 100 patients per day or more were significantly more likely to provide screening and access to bereavement therapy. CONCLUSION: Hospices appear to have high capacity to provide screening for CG and depression and to deliver group and individual therapy, but data are needed on whether screeners are evidence based and whether therapy addresses CG or depression specifically. Future work could build upon existing infrastructure to ensure use of well-validated screeners and evidence-based therapies.

Geographic Variation of Hospice Use Patterns at the End of Life.

BACKGROUND: Little is known about state-level variation in patterns of hospice use, an important indicator of quality of care at the end of life. Findings may identify states where targeted efforts for improving end-of-life care may be warranted. OBJECTIVE: Our aim was to characterize the state-level variation in patterns of hospice use among decedents and to examine state, county, and individual factors associated with these patterns. METHODS: We conducted a retrospective analysis of Medicare fee-for-service decedents. The primary outcome measures were state-level hospice use during the last 6 months of life and the state's proportion of hospice users with very short hospice enrollment (≤7 days), very long hospice enrollment (≥180 days), and hospice disenrollment prior to death. RESULTS: In 2011, the percentage of decedents who used hospice in the last 6 months of life nationally was 47.1%, and varied across states from 20.3% in Alaska to 60.8% in Utah. Hospice utilization patterns also varied by state, with the percentage of hospice users with very short hospice enrollment ranging from 23.0% in the District of Columbia to 39.9% in Connecticut. The percentage of very long hospice use varied from 5.7% in Connecticut to 15.9% in Delaware. The percentage of hospice disenrollment ranged from 6.2% in Hawaii to 19.0% in the District of Columbia. Nationally, state-level hospice use among decedents was positively correlated with the percentage of potentially concerning patterns (including very short hospice enrollment, very long hospice enrollment, and hospice disenrollment) among hospice users (the Pearson correlation coefficient=0.52, p value<0.001). Oregon was the only state in the highest quartile of hospice use and the lowest quartiles of both very short and very long hospice enrollment. CONCLUSIONS: The percentage of decedents who use hospice may mask important state-level variation in these patterns, including the timing of hospice enrollment, a potentially important component of the quality of end-of-life care.

Interdisciplinary staffing patterns: do for-profit and nonprofit hospices differ?

BACKGROUND: Interdisciplinary care is fundamental to the hospice philosophy and is a key component of high-quality hospice care. However, little is known about how hospices differ in their interdisciplinary staffing patterns, particularly across nonprofit and for-profit hospices. The purpose of this study was to examine potential differences in the staffing patterns of for-profit and nonprofit hospices. SUBJECTS AND DESIGN: Using the 2006 Medicare Provider of Services (POS) survey, we conducted a cross-sectional analysis of staffing patterns within Medicare-certified hospices operating in the United States in 2006. In bivariate and multivariable analyses, we examined differences in staffing patterns measured by the existence of a full range of interdisciplinary staff (defined as having at least 1 full-time equivalent (FTE) staff in each of 4 disciplines ascertained by the survey: physician, nursing, psychosocial, and home health aide) and by the professional mix of staff within each discipline. RESULTS: For-profit hospices had a winder range of paid staff but there were no differences by ownerships when volunteer staff were included. For-profit hospices had significantly fewer registered nurse FTEs as a proportion of nursing staff, fewer medical social worker FTEs as a proportion of psychosocial staff, and fewer clinician FTEs as a proportion of total staff (p values <0.05). Compared to nonprofit hospices, for-profit and government-owned hospices also used proportionally fewer volunteer FTEs. CONCLUSIONS: Hospice staffing patterns differed significantly by ownership type. Future research should evaluate the impact of these differences on quality of care and satisfaction among patients and families using hospice.

Common myths about caring for patients with terminal illness: opportunities to improve care in the hospital setting.

BACKGROUND: Shortcomings in the quality of care of hospitalized patients at the end of life are well documented. Although hospitalists and residents are often involved in the care of hospitalized patients with terminal illness, little is known about their knowledge and beliefs concerning terminal illness, despite the importance of such physicians to the quality of care at the end of life. DESIGN: In 2006 we conducted an exploratory study at a large academic medical center to examine the knowledge, attitudes, and practices of hospitalists and residents (n = 52, response rate = 85.2%) about the care of terminally ill patients. Data were collected using a 22-item survey instrument adapted from previously published instruments. RESULTS: Several common myths about treating terminally ill patients were identified. These myths pertained to essential aspects of end-of-life care including pain and symptom control, indications for various medications, and eligibility for hospice. Physicians reported positive attitudes about hospice care as well as the belief that many patients who would benefit from hospice do not receive hospice at all or only late in the course of their illness. CONCLUSIONS: Our findings identified misunderstandings that hospitalists and residents commonly have, including about facts essential to know in order to provide appropriate pain and symptom management. Future interventions to improve knowledge need to focus on specific clinical knowledge about opioid therapy, as well as information about eligibility rules for hospice.

Bereavement services for family caregivers: how often used, why, and why not.

BACKGROUND: Bereavement services are central to high-quality end-of-life care, however, little is known about how frequently and why such bereavement services are used and not used. We examined family caregiver reports about how often they used bereavement services, predictors of their use, and reported reasons for not using bereavement services. METHODS: Prospective cohort study of family caregivers (n = 161) of patients with cancer enrolled with hospice between October 1999 and September 2001. We conducted bivariate and multivariable analyses to determine predictors of bereavement service use, adjusted for a broad range of factors including caregiving experiences, major depressive disorder (MDD), relationship with the deceased, and demographic factors. We used content analysis to summarize responses to open-ended questions concerning why individuals did not use bereavement services. RESULTS: We found that approximately 30% of family caregivers used bereavement services in the year postloss, and the majority of these caregivers used services in the first 6 months postloss. Even among bereaved caregivers with MDD, less than half (47.6%) used bereavement services. Factors associated with using bereavement services included being a spouse caregiver, younger age, having MDD at study enrollment, witnessing highly distressing events pertaining to the patient's death, having assisted the patient with more Instrumental Activities of Daily Living (IADLs) prior to the patient's death, having greater availability of instrumental support for oneself, and physician communication with the caregiver about the patient's prognosis before the patient's death. The most common given reason for nonuse was the perception that bereavement services were not needed or would not help. CONCLUSION: Addressing caregiver receptivity to bereavement services will be an important aspect of increasing appropriate use of such services. Future studies might examine specific interventions for reducing barriers and increasing receptivity to bereavement service use.

Length of hospice enrollment and subsequent depression in family caregivers: 13-month follow-up study.

OBJECTIVE: Although more people are using hospice than ever before, the average length of hospice enrollment is decreasing. Little is known about the effect of hospice length of enrollment on surviving family caregivers. The authors examine the association between patient length of hospice enrollment and major depressive disorder (MDD) among the surviving primary family caregivers 13 months after the patient's death. METHODS: The authors conducted a three-year longitudinal study of 175 primary family caregivers of patients with terminal cancer who consecutively enrolled in the participating hospice from October 1999 through September 2001. Interviews were conducted with the primary family caregiver when the patient first enrolled with hospice and again 13 months after the patient's death. The authors used multivariate logistic regression models to estimate caregivers' adjusted risk at 13 months postloss for MDD, assessed using the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (SCID). RESULTS: The effect of very short hospice length of enrollment (three days or less) compared with longer lengths of enrollment on caregiver MDD 13 months after their loss was nonsignificant in unadjusted analyses. The adjusted risk of MDD was significantly elevated for caregivers of patients who had very short hospice enrollments (adjusted odds ratio: 8.76, 95%confidence interval: 1.09-70.19) only after adjusting for baseline MDD, caregiver gender, caregiver age, kinship relationship to patient, caregiver education, caregiver chronic conditions, and caregiver burden. The adjustment for caregiver burden resulted in the greatest increase in odds ratio for very short hospice length of enrollment on risk of caregiver MDD 13 months after the loss. CONCLUSIONS: This study identifies a potential target group of family caregivers, characterized by hospice length of enrollment and several caregiver features, who might be most in need of mental health interventions.

Religiousness and major depression among bereaved family caregivers: a 13-month follow-up study.

OBJECTIVE: To examine the association between a multi-item measure of religiousness and major depressive disorder (MDD) in bereaved family caregivers of patients with cancer. DESIGN: A prospective longitudinal study of primary caregivers of consecutive patients (n = 175) with cancer enrolled in the largest hospice in Connecticut. RESULTS: Caregivers with a high religiousness summary score were significantly less likely to have MDD at the 13-month follow-up interview (OR = 0.79, 95% CI: 0.68-0.91). This finding remained significant (OR = 0.74, 95% CI: 0.59-0.91) after adjustment for caregiver MDD at baseline, caregiver age, caregiver burden, and number of activities restricted due to caregiving roles. CONCLUSIONS: Family caregivers who reported greater religiousness at baseline had lower rates of depression in the 13-month follow up after their loss. Collaboration with religious support groups or community groups during bereavement could offer an effective mechanism for speeding the process of recovery for some caregivers.

Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said?

BACKGROUND: Few studies have examined physician-family caregiver communication at the end of life, despite the important role families have in end-of-life care decisions. We examined family caregiver reports of physician communication about incurable illness, life expectancy, and hospice; the timing of these discussions; and subsequent family understanding of these issues. DESIGN: Mixed methods study using a closed-ended survey of 206 family caregivers and open-ended, in-depth interviews with 12 additional family caregivers. SETTING/SUBJECTS: Two hundred eighteen primary family caregivers of patients with cancer enrolled with hospice between October 1999 and June 2002. MEASUREMENTS: Family caregiver reports provided at the time of hospice enrollment of physician discussions of incurable illness, life expectancy, and hospice. RESULTS: Many family caregivers reported that a physician never told them the patient's illness could not be cured (20.8%), never provided life expectancy (40% of those reportedly told illness was incurable), and never discussed using hospice (32.2%). Caregivers reported the first discussion of the illness being incurable and of hospice as a possibility occurred within 1 month of the patient's death in many cases (23.5% and 41.1%, respectively). In open-ended interviews, however, family caregivers expressed ambivalence about what they wanted to know, and their difficulty comprehending and accepting "bad news" was apparent in both qualitative and quantitative data. CONCLUSION: Our findings suggest that ineffective communication about end-of-life issues likely results from both physician's lack of discussion and family caregiver's difficulty hearing the news. Future studies should examine strategies for optimal physician-family caregiver communication about incurable illness, so that families and patients can begin the physical, emotional, and spiritual work that can lead to acceptance of the irreversible condition.

Factors associated with caregiver burden among caregivers of terminally ill patients with cancer.

OBJECTIVE: To identify factors associated with caregiver burden among those caring for terminally ill patients with cancer. DESIGN: Cross-sectional study of interviews with primary caregivers (n = 206) of consecutive patients with cancer enrolled in the largest hospice in Connecticut. METHODS: Data were collected on the caregivers' sociodemographic characteristics, social network index, and number of restrictions in their own activities due to their caregiving role. The outcome was a nine-item questionnaire adapted from the Zarit Burden Inventory. RESULTS: The highest burden was reported among caregivers with more limited social networks (OR 1.38, Cl 1.02-1.87), more restrictions in their daily activities (OR 1.35, Cl 1.13-1.61), and who were younger (OR 1.46, Cl 1.10-1.93). CONCLUSIONS: Variations exist in the intensity of caregiver burden based on subjective experiences and social support, rather than on the amount of assistance provided. Clinicians should consider factors such as these when targeting caregivers for interventions to alleviate burden.

Nurses' attitudes and practice related to hospice care.

PURPOSE: To describe characteristics, attitudes, and communications of nurses regarding hospice and caring for terminally ill patients. DESIGN: A cross-sectional study of randomly selected nurses (n = 180) from six randomly selected Connecticut community hospitals was conducted in 1998 and 1999. METHODS: Hospice-related training, knowledge and attitudes, demographic and practice characteristics, and personal experience with hospice were assessed with a self-administered questionnaire (response rate = 82%). Logistic regression was used to model the effects of hospice-related training, knowledge, and attitudes on these outcomes, adjusting for personal experience and other characteristics of nurses. FINDINGS: Characteristics associated with discussion of hospice with both patients and families included greater religiousness, having a close family member or friend who had used hospice, and reporting satisfaction with hospice caregivers. Greater self-rated knowledge was significantly associated with discussion of hospice with patients. Attitudinal scores indicating greater comfort with initiating discussion and greater perceived added benefit of hospice were significantly associated with discussion with patients' families. CONCLUSIONS: Nurses' discussion of hospice with terminally ill patients and their families are related to the potentially modifiable factors of self-rated knowledge and attitudes revealing comfort with discussion and perceived benefit of hospice care.

The effect of inpatient hospice units on hospice use post-admission.

The objective of this study was to determine whether having a hospice unit within the hospital increases the proportion of terminally ill patients who use hospice services (including home, nursing home, or inpatient hospice) post-admission. Using medical record data abstracted for 232 randomly selected patients with terminal cancer admitted to six community hospitals in Connecticut, we found that patients admitted to a hospital with a hospice unit were more likely to use hospice services (i.e., home hospice, nursing home hospice, or inpatient hospice) post-admission than patients admitted to a hospital without a hospice unit (unadjusted OR 5.7, 95% CI 3.1, 10.6). This effect persisted after adjusting for patient age, gender, marital status, documented discussions of prognosis, prior hospice use, and type of cancer.

Physicians' ratings of their knowledge, attitudes, and end-of-life-care practices.

PURPOSE: Health care institutions are examining ways to improve physicians' skills in the delivery of end-of-life (EOL) care. Experts have suggested that influencing physicians' knowledge and attitudes concerning EOL care can influence subsequent EOL practices, including hospice use for appropriate patients; yet few studies have examined empirically the influence of physicians' knowledge and attitudes on such practices. The authors assessed the influences of self-rated knowledge and attitudes on physicians' discussions and referrals for hospice care. METHOD: In 1998 and 1999 the authors conducted a cross-sectional study of physicians affiliated with six randomly selected community hospitals in Connecticut with more than 200 licensed medical and surgical beds. Physicians completed a self-administered questionnaire (response rate 52.4%) that assessed self-rated knowledge of terminal care and hospice, a set of attitudinal items, and practices related to hospice discussion and referrals, as well as standard sociodemographic data. Bivariate and multivariate analyses were conducted. RESULTS: Self-rated knowledge was significantly associated with referral practices in unadjusted analyses (unadjusted odds ratio [OR]: 0.70; 95% confidence interval [CI]: 0.52, 0.95), although this association was attenuated in adjusted analyses by specialty and other physicians' characteristics (adjusted OR: 0.80; 95% CI: 0.55, 1.18). Attitudes representing support for hospice practices and philosophy were associated with referral practices in adjusted and unadjusted analyses (adjusted OR:0.52; 95% CI: 0.35, 0.77). CONCLUSIONS: This study demonstrated that self-rated knowledge and attitudes may influence hospice referral. The results support current efforts to develop medical school curricula and continuing education programs that better cover the many aspects of caring for the dying, including hospice use.