Hospice Admission Practices: Where Does Hospice Fit in the Continuum of Care?

OBJECTIVES: To evaluate selected hospice admission practices that could represent barriers to hospice use and the association between these admission practices and organizational characteristics. DESIGN: From December 1999 to March 2000, hospices were surveyed about selected admission practices, and their responses were linked to the 1999 California Office of Statewide Health Planning and Development's Home and Hospice Care Survey that describes organizational characteristics of California hospices. SETTING: California statewide. PARTICIPANTS: One hundred of 149 (67%) operational licensed hospices. MEASUREMENTS: Whether hospices admit patients who lack a caregiver; would not forgo hospital admissions; or are receiving total parenteral nutrition (TPN), tube feedings, radiotherapy, chemotherapy, or transfusions. RESULTS: Sixty-three percent of hospices restricted admission on at least one criterion. A significant minority of hospices would not admit patients lacking a caregiver (26%). Patients unwilling to forgo hospitalization could not be admitted to 29% of hospices. Receipt of complex medical care, including TPN (38%), tube feedings (3%), transfusions (25%), radiotherapy (36%), and chemotherapy (48%), precluded admission. Larger program size was significantly associated with a lower likelihood of all admission practices except restricting the admission of patients receiving TPN or tube feedings. Hospice programs that were part of a hospice chain were less likely to restrict the admission of patients using TPN, radiotherapy, or chemotherapy than were freestanding programs. CONCLUSION: Patients who are receiving complex palliative treatments could face barriers to hospice enrollment. Policy makers should consider the clinical capacity of hospice providers in efforts to improve access to palliative care and more closely incorporate palliation with other healthcare services.     

Does Hospice Improve Quality of Care for Persons Dying from Dementia?

OBJECTIVES: To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members. DESIGN: Mortality follow‐back survey. SETTING: Death certificates were drawn from five states (AL, FL, TX, MA, and MN). PARTICIPANTS: Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death. MEASUREMENTS: Ratings of the quality of end‐of‐life care, perceptions of unmet needs, and opportunities to improve end‐of‐life care. Two questions were also asked about the peacefulness of dying and quality of dying. RESULTS: Of 538 respondents, 260 (48.3%) received hospice services. Family members of decedents who received hospice services reported fewer unmet needs and concerns with quality of care (adjusted odds ratio (AOR)=0.49, 95% confidence interval (CI)=0.33–0.74) and a higher rating of the quality of care (AOR=2.0, 95% CI=1.53–2.72). They also noted better quality of dying than those without hospice services. CONCLUSION: Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying.     

Barriers associated with the delivery of Medicare-reimbursed diabetes self-management education

PURPOSE: The purpose of this study was to explore the barriers that practitioners face in providing diabetes self-management education (DSME) to Medicare beneficiaries, with a special focus on barriers faced by rural providers. METHODS: Using an e-mail survey, Diabetes Control Program Coordinators (DCPCs) in all US states were asked 3 open-ended questions to understand problems with obtaining American Diabetes Association (ADA) recognition for Medicare reimbursement, differences in obtaining ADA recognition by rural and urban facilities, and facility-level barriers to providing DSME to Medicare patients. Using a mail survey administered to half of ADA-recognized diabetes education centers (DECs), information was collected about perceived barriers to providing DSME in all areas and rural areas. RESULTS: Most DCPCs believed it was more difficult for rural providers to obtain ADA recognition than for urban providers; the largest barriers were costs and reporting requirements. The top barriers for rural providers mentioned by DCPCs were the shortage of designated specialists, fewer resources, and high application fees for ADA recognition. Barriers identified by DEC respondents facing rural providers include staffing/institutional support, amount of Medicare reimbursement, lack of hours covered, and transportation. DEC respondents providing care in urban areas only were more likely to perceive barriers to providing diabetes education in rural areas than were rural providers. CONCLUSIONS: Barriers to DSME are perceived to be higher for rural providers than urban providers. Urban providers perceived that many barriers to DSME are greater for rural providers. The ADA application process is perceived as expensive and laborious. Most respondents perceived Medicare reimbursement for DSME as inadequate.     

Hospice care for patients with advanced lung disease.

Hospices are organized programs of support services for patients in the advanced stages of a terminal illness and their families. Although hospices serve dying patients regardless of diagnosis, limited available evidence suggests that these programs are relatively underutilized by patients dying of nonmalignant lung diseases. One explanation may be a lower awareness of hospice eligibility criteria and services among pulmonologists than oncologists. The unpredictability of death from advanced lung disease is another likely reason. Certain limitations on federal and private insurance coverage for patients with advanced lung disease probably contribute as well. For those patients who do enroll, hospice offers expert palliation of physical, psychological, social, and spiritual distress, as well as practical support for home care needs, hospitalization for short-term control of symptoms, and inpatient respite care for relief of home caregivers. Hospice workers view dying as an active phase of life filled with the pursuit of goals that patients and family members wish to complete before or shortly after the end of life. This article reviews hospice care in the United States with particular attention to eligibility criteria and services available for patients who are dying of an advanced lung disease. Specific recommendations are offered for referring respiratory disease patients to hospice programs.     

Decisions for hospice care in patients with advanced cancer

OBJECTIVES: To identify factors that may influence the decision of whether to enter a hospice program or to continue with a traditional hospital approach in patients with advanced cancer and to understand their decision-making process. DESIGN: Cross-sectional structured interview. SETTING: One community-based hospice and three university-based teaching hospitals. PARTICIPANTS: Two hundred thirty-four adult patients diagnosed with advanced lung, breast, prostate, or colon cancer with a life expectancy of less than 1 year: 173 hospice patients and 61 nonhospice patients receiving traditional hospital care. MEASUREMENTS: Hospice and nonhospice patients' demographic, clinical, and other patient-related characteristics were compared. Multivariate analysis was then conducted to identify variables associated with the hospice care decision in a logistic regression model. Information sources regarding hospice care and people involved in the hospice decision were identified. RESULTS: Patients receiving hospice care were significantly older (average age 69 vs 65 years, P =.009) and less educated (average 11.9 vs 12.9 years, P =.031) and had more people in their households (average 1.66 vs 1.16 persons, P =.019). Hospice patients had more comorbid conditions (1.30 vs 0.93, P =.035) and worse activities of daily living scores (7.01 vs 6.23, P =.030) than nonhospice patients. Hospice patients were more realistic about their disease course than their nonhospice counterparts. Patients' understanding of their prognoses affected their perceptions of the course of their disease. Hospice patients preferred quality of life to length of life. In the multivariate analysis, lower education level and greater number of people in the household were associated with the decision to enter hospice. A healthcare provider first told most of those who entered hospice about hospice. Families largely made the final decision to enter hospice (42%), followed by patients themselves (28%) and physicians (27%). CONCLUSION: The decision to enter hospice is related to demographic, clinical, and other patient-related characteristics. This study suggests that the decision-making process for hospice care in patients with advanced cancer is multidimensional. The healthcare community may better meet the end-of-life care needs of advanced cancer patients through enhanced communication with patients and families, including providing accurate prognoses and better understanding of patients' preferences and values.     

The Growth of Hospice Care in U.S. Nursing Homes

OBJECTIVES: To inform efforts aimed at reducing Medicare hospice expenditures by describing the longitudinal use of hospice care in nursing homes (NHs) and examining how hospice provider growth is associated with use. DESIGN: Longitudinal study using NH resident assessment (Minimum Data Set) and Medicare denominator and claims data for 1999 through 2006. SETTING: NHs in the 50 U.S. states and the District of Columbia. PARTICIPANTS: Persons dying in U.S. NHs. MEASUREMENTS: Medicare beneficiaries dying in NHs, receipt of NH hospice, and lengths of hospice stay were identified. The number of hospices providing care in NHs was also identified, and a panel data fixed‐effect (within) regression analysis was used to examine how growth in providers affected hospice use. RESULTS: Between 1999 and 2006, the number of hospices providing care in NHs rose from 1,850 to 2,768, and rates of NH hospice use more than doubled (from 14% to 33%). With this growth came a doubling of mean lengths of stay (from 46 to 93 days) and a 14% increase in the proportion of NH hospice decedents with noncancer diagnoses (69% in 1999 to 83% in 2006). Controlling for time trends, for every 10 new hospice providers within a state, there was an average state increase of 0.58% (95% confidence interval=0.383–0.782) in NH hospice use. Much state variation in NH hospice use and growth was observed. CONCLUSION: Policy efforts to curb Medicare hospice expenditures (driven in part by provider growth) must consider the potentially negative effect of changes on access for dying (mostly noncancer) NH residents.     

An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.     

Hospice enrollment and hospitalization of dying nursing home patients.

PURPOSE: This study's purpose was to evaluate whether Medicare hospice care provided in nursing homes is associated with lower hospitalization rates. SUBJECTS AND METHODS: This retrospective cohort study included nursing home residents in five states who enrolled in hospice between 1992 and 1996 (n = 9202), and who died before 1998. For each hospice patient, 3 nonhospice residents (2 in 106 instances) were chosen (n = 27,500). Medicare claims identified hospice enrollment and acute care hospitalizations. RESULTS: Twenty-four percent of hospice and 44% of nonhospice residents were hospitalized in the last 30 days of life. Adjusting for confounders, hospice patients were less likely than nonhospice residents to be hospitalized (odds ratio 0.43; 95% confidence interval [CI]: 0.39 to 0.46). Considering all of nonhospice residents who died (n = 226,469), those in facilities with no hospice had a 47% hospitalization rate, whereas rates were 41% in facilities with low hospice use and 39% in facilities with moderate hospice use (5%+ of patients in hospice). Hospitalization was less likely for nonhospice residents in facilities with low hospice use (odds ratio 0.82; 95% CI: 0.80 to 0.84) and moderate hospice use (odds ratio 0.71; 95% CI: 0.69 to 0.74), compared with those in facilities with no hospice. CONCLUSIONS: When integrated into the nursing home care processes, hospice care is associated with less hospitalization for Medicare hospice patients. Additionally, possibly through diffusion of palliative care philosophy and practices, nonhospice residents who died in nursing homes having a hospice presence had lower rates of end-of-life hospitalizations.     

Practice Constraints,Behavioral Problems,and Dementia Care: Primary Care Physicians’ Perspectives

Objectives To examine how practice constraints contribute to barriers in the health care of persons with dementia and their families, particularly with respect to behavioral aspects of care. Design Cross-sectional qualitative interview study of primary care physicians. Setting Physicians’ offices. Participants Forty primary care physicians in Northern California. Measurements Open-ended interviews lasted 30–60 minutes and were structured by an interview guide covering clinician background and practice setting, clinical care of a particular patient, and general approach to managing patients with AD or dementia. Interviews were transcribed and themes reflecting constraints of practice were identified through a systematic coding process. Results Recurring themes (i.e., those present in ≥25% of physician interviews) included insufficient time, difficulty in accessing and communicating with specialists, low reimbursement, poor connections with community social service agencies, and lack of interdisciplinary teams. Physician narratives suggest that these constraints may lead to delayed detection of behavior problems, “reactive” as opposed to proactive management of dementia, and increased reliance on pharmacological rather than psychosocial approaches. Conclusion Physicians often feel challenged in caring for dementia patients, particularly those who are more behaviorally complex, because of time and reimbursement constraints as well as other perceived barriers. Our results suggest that more effective educational interventions (for families and physicians) and broader structural changes are needed to better meet the needs of the elderly with dementia and their families now and in the future. Without these changes, dementia care is likely to continue to fall short.     

Do Rural Elders Have Limited Access to Medicare Hospice Services?

OBJECTIVES: To examine whether there are urban-rural differences in use of the Medicare hospice benefit before death and whether those differences suggest that there is a problem with access to hospice care for rural Medicare beneficiaries. DESIGN: Observational study using 100% of Medicare enrollment, hospice, and hospital claims data. SETTING: Inpatient hospitals and hospices. PARTICIPANTS: Persons aged 65 and older in the Medicare program who died in 1999. MEASUREMENTS: Rates of hospice use before death and in-hospital death rates were calculated. RESULTS: In 1999, there were 1.76 million deaths of Medicare beneficiaries aged 65 and older. Hospice services were used by 365,700 of these beneficiaries. Rates of hospice care before death were negatively associated with degree of rurality. The lowest rate of hospice use, 15.2% of deaths, was seen in rural areas not adjacent to an urban area. The highest rate of use, 22.2% of deaths, was seen in urban areas. Rural areas adjacent to urban areas had an intermediate level of hospice use (17.0% of deaths). Hospices based in rural areas had a smaller number of elderly patients each year than hospices based in urban areas (P<.001) and were more likely to have very low volumes (average daily census of three patients or less). CONCLUSION: The consistently lower use of Medicare hospice services before death and smaller sizes of rural hospices suggest that the combination of Medicare hospice payment policies and hospice volumes are problematic for rural hospices. Adjusting Medicare payment policies might be a critical step to assure availability of hospice services forterminally ill beneficiaries regardless of where they live.     

Government expenditures at the end of life for short- and long-stay nursing home residents: differences by hospice enrollment status

OBJECTIVES: To examine end-of-life government expenditures for short- and long-stay Medicare- and Medicaid-eligible (dual-eligible) nursing home (NH) hospice and nonhospice residents. DESIGN: A retrospective cohort study. SETTING: Six hundred fifty-seven Florida NHs. PARTICIPANTS: Dual-eligible NH residents who died in Florida NHs between July and December 1999 (N=5,774). MEASUREMENTS: Nursing home stays of 90 days or less were considered short stays (n=1,739), and those over 90 days were long stays (n=4,035). Three diagnosis groups were studied: cancer without Alzheimer's disease or dementia, Alzheimer's disease or dementia, and other diagnoses. Eligibility and expenditure claims data for 1998 and 1999 were merged with vital statistics and NH resident assessment data to determine diagnoses, location of death, hospice enrollment, eligibility, and expenditures. RESULTS: Twenty percent of short-stay (n=350) and 26% of long-stay (n=958) NH decedents elected hospice; of these, 73% of short-stay and 58% of long-stay NH residents had hospice stays of 30 days or less. Overall, mean government expenditures in the last month of life were significantly less for hospice than nonhospice residents (7,365 dollars; 95% confidence interval (CI)=7,144-7586 dollars vs 8,134 dollars; 95% CI=7,896-8,372 dollars), but 1-month expenditures were only significantly lower for hospice residents with short NH stays, not for those with long NH stays. CONCLUSION: Overall, hospice care in NHs does not appear to increase government expenditures. Because significantly lower expenditures are observed for short-stay NH hospice residents, policy restricting access to Medicare hospice for Medicare skilled nursing facility residents may represent a missed opportunity for savings.     

Help seeking in older Asian people with dementia in Melbourne: Using the Cultural Exchange Model to explore barriers and enablers

The prevalence of dementia is increasing in Australia. Limited research is available on access to Cognitive Dementia and Memory Services (CDAMS) for people with dementia from Culturally and Linguistically Diverse (CALD) communities. This study aimed to determine the barriers and enablers to accessing CDAMS for people with dementia and their families of Chinese and Vietnamese backgrounds. Consultations with community members, community workers and health professionals were conducted using the “Cultural Exchange Model” framework. For carers, barriers to accessing services included the complexity of the health system, lack of time, travel required to get to services, language barriers, interpreters and lack of knowledge of services. Similarly, community workers and health professionals identified language, interpreters, and community perceptions as key barriers to service access. Strategies to increase knowledge included providing information via radio, printed material and education in community group settings. The “Cultural Exchange Model” enabled engagement with and modification of the approaches to meet the needs of the targeted CALD communities.     

Ryan White CARE Act Title II survey: services for HIV-positive substance users

A national survey was conducted among Ryan White CARE Act-funded providers to determine what types of services are specifically provided for HIV-positive substance users through Title II within the context of the overall delivery system for substance abuse treatment services. There was an 87% return rate on questionnaires representing 47 states. Only 18 of the 47 states reported funding some form of substance abuse services. The results show (1) the types of substance abuse services funded under Title II, (2) what special populations are served by those programs, (3) additional funding sources utilized by those programs, (4) the common systemic barriers to care, (5) the greatest programmatic barriers to care, and (6) gaps in knowledge about unmet needs for HIV-positive substance users. Some states have been quite innovative in targeting resources to support HIV-positive substance users while others report less activity. Although design and implementation of innovative programs for HIVpositive substance users rests with service providers, state agencies responsible for Title II planning are in the best position to identify system strengths and weaknesses.     

Availability of data when heart failure patients are admitted to hospice

Guidelines recommend hospice care for patients with advanced heart failure (HF) who are approaching end of life. However, little is known about the data available when HF patients are admitted to hospice. This pilot study surveyed the staff from 100 hospices in the United States and Canada about how frequently data were provided to or obtained by the hospice when admitting HF patients and how important they perceived the data. The survey response rate was 66%. Overall, data were less often provided or obtained than rated important (aggregate mean difference, P<.001, r=.75). Data important to prognostication or ongoing care were provided to or readily obtained by the hospices for blood pressure (50.0%), left ventricular ejection fraction (EF) (50.0%), edema (58.3%), HF medications, symptoms of dyspnea (63.2%), chest pain (57.2%), common comorbidities, and pacemaker (69.6%) or other devices (60.0%). Approximately half of the time, hospices reported that they rarely or never received information about medication intolerance. Significant amounts of clinically valid data are not provided to or obtained by hospice providers when admitting HF patients. Investigations are needed to corroborate these findings, understand information transfer at transitions in care, and to determine the impact of admission data on hospice care for HF patients. Congest Heart Fail.     

Hospice use and outcomes in nursing home residents with advanced dementia

OBJECTIVES: To identify characteristics of nursing home (NH) residents with advanced dementia and their healthcare proxies (HCPs) associated with hospice referral and to examine the association between hospice use and the treatment of pain and dyspnea and unmet needs during the last 7 days of life. DESIGN: Prospective cohort study. SETTING: Twenty‐two Boston‐area NHs. PARTICIPANTS: Three hundred twenty‐three NH residents with advanced dementia and their HCPs. MEASUREMENTS: Data were collected at baseline and quarterly for up to 18 months. Hospice referral, frequency of pain and dyspnea, and treatment of these symptoms was ascertained. HCPs reported unmet needs during the last 7 days of the residents' lives for communication, information, emotional support, and help with personal care. RESULTS: Twenty‐two percent of residents were referred to hospice. After multivariable adjustment, factors associated with hospice referral were nonwhite race, eating problems, HCP's perception that the resident's had less than 6 months to live, and better HCP mental health. Residents in hospice were more likely to receive scheduled opioids for pain (adjusted odds ratio (AOR)=3.16; 95% confidence interval (95% CI)=1.57–6.36) and oxygen, morphine, scopolamine, or hyoscyamine for dyspnea (AOR=3.28, 95% CI=1.37–7.86). HCPs of residents in hospice reported fewer unmet needs in all domains during the last 7 days of the residents' life. CONCLUSION: A minority of NH residents with advanced dementia received hospice care. Hospice recipients were more likely to received scheduled opioids for pain and symptomatic treatment for dyspnea and had fewer unmet needs at the end of life.     

Dying right in theory and practice. What do we really know of terminal care?

Despite the widely held belief that hospices treat dying patients differently than conventional hospitals do, few systematic comparisons exist. We reviewed medical charts to study the terminal care practice at one hospital and two inpatient hospices. As expected, hospital patients had more diagnostic tests and higher laboratory charges than patients in either hospice did. Yet physicians' notes about patients' families or nonmedical aspects of illness were infrequent at all three institutions. Furthermore, analgesic use and the frequency of nurses' notes about nonmedical or family issues differed between hospices: sometimes one hospice, sometimes the other, resembled the hospital closely. Hence, some common assumptions about hospice care appear inaccurate. We believe that health professionals who attend dying patients--whether in hospitals or hospices--have an obligation to examine their terminal care practices critically and to develop standards appropriate for their institutions.     

Survey research guiding public policy making in Maryland: the case of Alzheimer's disease and related disorders

The Maryland Governor's Task Force on Alzheimer's Disease and Related Disorders conducted a comprehensive 18-month assessment of the extent of dementing illness in Maryland, the needs of Maryland dementia victims and their families, and the availability of resources to meet these needs. A major tool in this assessment was a series of 16 specially designed surveys which were sent to physicians, family caregivers, nursing homes, geriatric aide training programs, and other populations. The survey findings, along with hearing testimony, provided the basis for the Task Force's 18 principal and 35 further recommendations, published in the Maryland Report on Alzheimer's Disease and Related Disorders (Governor's Task Force, 1985). These recommendations have become the basis of public policy discussion for services to dementia victims and their families in Maryland.