Other Studies

• 6. Ackermann, RJ; Kemle, KA. Death in a Nursing Home with Active Medical Management. Annals of Long-Term Care; 1999; 7(8):313-319. Annotation This is a retrospective chart review study set in a 92-bed teaching nursing home where patients were visited by a physician or PA between three and five times per week over a seven year period. There were 302 patients treated, 175 of whom died. Most patients elected to forego any extreme measures. The study concluded that combining comprehensive medical care with a palliative approach to terminal illness is possible in long-term care. Frequent provider visits and utilization of Medicare hospice benefits facilitate decisions to withhold life-sustaining treatments and the management of terminal illness in the nursing facility.
• 7. Baer, WM; Hanson, LC. Families’ Perception of the Added Value of Hospices in the Nursing Home. Journal of the American Geriatrics Society; 2000; 48:879-882. Annotation Family members (n=292) of nursing home residents receiving hospice care were surveyed after the death of the resident. Quality of care was rated as good or excellent for physical symptoms by 64% of respondents before hospice care and by 93% of respondents after hospice care; similarly, quality of care was rated as good or excellent for emotional needs by 64% of respondents before hospice care and by 90% of respondents after hospice care. Fifty-three percent of respondents felt hospice prevented hospitalization. Hospice was valued by families at a median added value of $75 per day, and distinct tasks were attributed to hospice and nursing home staff members. Kappa statistics for individual items were 0.70. [Pub Med]
• 8. Buchanan, RJ; Choi, M; Wang, S; Huang, C. Analyses of Nursing Home Residents in Hospice Care using the Minimum Data Set. Palliative Medicine; 2002; 16: 465-480. Annotation To present comprehensive profiles of American nursing home residents, stated to be under hospice care at admission, the authors examined 40,622 MDS admission assessments in relation to pain, cognitive impairment, diagnoses, medications, nutrition and treatment. Results show that nursing home residents under hospice care when admitted to the nursing home need better pain management, advanced directives, mental health services, and palliative care. [Pub Med]
• 9. Campbell, DE; Lynn, J; Louis, TA; Shugarman, LR. Medicare Program Expenditures Associated with Hospice Use. Annals of Internal Medicine; 2004; 140(4):269-277. Annotation This retrospective cohort study examined the Medicare expenditures for hospice versus non-hospice patients with cancer and non-cancer diagnoses. Patients were elderly Medicare fee-for-service beneficiaries who received 36 months of continuous Part A and Part B coverage before death. Results showed that adjusted mean expenditures in the last year of life were 4% higher overall for hospice enrollees compared to non-enrollees. Of those with cancer diagnoses, expenditures were 1% less for enrollees than for non-enrollees; expenditures for hospice enrollees without cancer were 11% higher than non-enrollees in hospital, nursing homes and outpatient settings. The authors conclude that, even if somewhat more expensive than conventional care, the comprehensiveness and continuity of hospice care may merit the additional costs. [Pub Med]
• 10. Casarett, DJ; Hirschman, KB; Henry. MR. Does Hospice Have a Role in Nursing Home Care at the End-of-Life? Journal of the American Geriatrics Society; 2001; 49:1493-1498. Annotation This retrospective preliminary study assesses the benefits and challenges of hospice involvement in the nursing home by reviewing the computerized clinical care records for 1,692 patients (65 years and older) of a not-for-profit hospice. Of these, 167 were residents in nursing homes and 975 lived in the community. The results show that hospices can identify need for care in a substantial number of nursing home residents. The authors suggest that nursing homes and hospices pay close attention to forming their collaborations and that residents who seek hospice care earlier are provided with the greatest service. [Pub Med]  
• 11. Dixon, S; Fortner, J; Travis, SS. Barriers, Challenges, and Opportunities Related to the Provision of Hospice Care in Assisted-Living Communities. American Journal of Hospice and Palliative Care; 2002; 19(3):187-192. Annotation This qualitative study was based on three focus groups: 1) family members (n=4) whose relative received hospice care while residing in the assisted living facility, 2) administrators of assisted living communities (n=6), and 3) hospice team members who were assigned to nursing home and assisted living clients (n=8). The main finding showed the three groups agreed that residents in assisted living have the right to live and die in place without being transferred to nursing homes. An obstacle to hospice care was felt to be that it is not easily transported into the social models of care characterized by assisted living environments. The authors stated that changes in hospice organization’s policy and procedures as well as assisted living industry standards and policies (especially in the areas of qualified staff retention and consistent quality-of-care) would be necessary for hospice to be viable in the assisted living setting. [Pub Med]
• 12. Hanson, LC; Henderson, M; Menon, M. As Individual as Death Itself: A Focus Group Study of Terminal Care in Nursing Homes. Palliative Medicine; 2002; 5(1):117-125. Annotation In this study, 11 focus groups with 77 participants composed of nursing home staff and physicians were audio-taped and asked to discuss 3 questions: How does someone die in a nursing home? What makes the difference between a good death and a bad death? And, what can aides, nurses, or physicians do to help ensure that when someone dies it is a good death? Results showed lack of training and resources as well as a regulatory emphasis on rehabilitation to be barriers to higher quality care for the dying. Three major themes emerged for defining a good death: highly individualized care based on continuity, effective teamwork, and comprehensive advanced care planning. [Pub Med]  
• 13. Jones, B; Nackerud, L; Boyle, D. Differential Utilization of Hospice Services in Nursing Homes. The Hospice Journal; 1997; 12(3):41-57. Annotation Using the interpretive evaluation paradigm, this project explored the hypothesis that nursing home administrators with negative ideas toward hospice care in their facilities were unlikely to promote its use, and it evaluated specific areas of administrators’ concerns. Based on written surveys from 23 nursing home administrators, nursing homes with administrators sympathetic to hospice care had higher rates of hospice use; rates varied from 2% to 39%. The concerns of some administrators were that hospice was an unneeded extra, that procedural costs and problems with hospice were not appreciated, that hospice practices might be too close to euthanasia, and that there would be financial consequences of admitting patients who would be sure money losers. An agenda for negotiating contracts that addresses the administrators’ concerns is suggested. [Pub Med]
• 18. Kovach, CR. Effects of Hospice Interventions on Nursing Home Residents with Later Stages of Dementia. Chapter 15 in Hospice Care for Patients with Advanced Progressive Dementia; Volicer, L; Hurley, A. (eds). Springer Series on Ethics, Law, and Aging; 1998: 276-292. Annotation In addition to presenting guidelines from the Office of Technology Assessment for special care units for people with dementia, this chapter describes a research project designed to determine the efficacy of opening hospice households on traditional nursing home units for people with dementia. Five hospice households in three nursing homes with 92 participants were designed by an interdisciplinary team over a five-month period. Key elements included admission criteria, specific hospice household interventions, environmental modifications, use of a hospice nurse as case manager, and specialized staff education. Examples of staff group exercises are shown and quality indicators, such as an updated comfort care plan, using the preferred name when talking to the patient and family support for the hospice program. Interviews with staff members indicated greater satisfaction with their jobs, increased caring and empathy, and an overall improvement in the outlook of the patients.
• 19. Miller, SC; Gozalo, P; Mor, V. Hospice Enrollment and Hospitalization of Dying Nursing Home Patients. American Journal of Medicine; 2001; 111:38-44. Annotation This retrospective 5-state population-based cohort study evaluated whether Medicare hospice care provided in nursing homes is associated with lower hospitalization rates. For each hospice patient, three non-hospice patients were chosen to be in the study (overall n=27,500). Medicare claims and resident assessment data (MDS) identified hospice enrollees and hospitalizations. Results showed a significantly lower rate of hospitalization for hospice compared to non-hospice patients and fewer hospitalizations in the last month of life for non-hospice residents in nursing homes with a hospice presence. [Pub Med]
• 20. Miller, SC; Kinzbrunner, B; Pettit, P; Williams, JR. How Does the Timing of Hospice Referral Influence Hospice Care in the Last Days of Life? Journal of the American Geriatrics Society 51:6:798-806. Annotation This is a retrospective study of patients enrolled in hospice which determined the factors associated with the type of hospice received in the last days of life and, in particular, how the timing of referral was associated with the use of continuous hospice home care and inpatient hospice care. The sample consisted of 28,747 hospice patients from one hospice provider spanning 21 programs and 7 states. Results suggest that continuous hospice home care in the last week of life is less likely to occur when patients have short hospice stays. Also, the probability of dying in an inpatient hospice bed is substantially greater for patients referred from hospitals and those referred closer to the time of death. [Pub Med]  
• 21. Miller, SC; Mor, V; Teno, J. Hospice Enrollment and Pain Assessment and Management in Nursing Homes. Journal of Pain and Symptom Management; 2003; 26:3:791-799. Annotation This study compared pain assessment and management in the last 48 hours of life for hospice (n=209) and non-hospice (n=172) residents in 28 nursing homes in six states. For those with pain documented (n=93), longer-stay hospice residents (hospice stay >7 days) had a significantly greater likelihood of having pain assessed as well as of receiving an opioid and an opioid twice a day for assessed pain compared to non-hospice residents. Shorter-stay hospice residents (hospice stay = 7 days) also had a significantly greater likelihood of having pain assessed compared to non-hospice residents, but opioid administration was not statistically different from non-hospice nursing home residents. Study results suggest that hospice enrollment improves pain assessment and management for nursing home residents. The authors also document the need for continued improvement of pain management in nursing homes and speculate that short hospice stays may not allow sufficient time for hospice treatment plan changes to be implemented. [Pub Med]  
• 22. Miller, SC; Mor, V; Wu, N; Gozalo, P; Lapane, K. Does Receipt of Hospice care in Nursing Homes Improve the management of Pain at the End of Life? Journal of the American Geriatrics Society; 2002; 50:507-515. Annotation This study was designed as a retrospective cohort study comparing analgesic management of daily pain for dying nursing home residents enrolled and not enrolled in Medicare hospice. The sub-sample of residents with daily pain consisted of 709 hospice and 1,326 non-hospice residents. Detailed drug use data from the last MDS before death were used to examine daily analgesic management of pain. Fifty-one percent of hospice residents and 33% of non-hospice residents received any analgesic at least twice a day for daily pain. The authors concluded that analgesic management of daily pain is better for nursing home residents enrolled in hospice than for those not enrolled in hospice. The prescribing practices portrayed in this study reveal that many dying nursing home residents in daily pain are receiving analgesic treatment which is not in agreement with established guidelines. Improving the analgesic management of pain in nursing homes is essential if high quality end-of-life care in nursing homes is to be achieved. [Pub Med]  
• 23. Miller, SC; Weitzen, S; Kinzbrunner B. Factors Associated with the High Prevalence of Short Hospice Stays. Palliative Medicine; 2003; 6:5:725-736. Annotation The goal of this study was to understand the factors associated with hospice stays of 7 days or less and to test the hypothesis that independent of changes in socio-demographics, diagnoses, and site of care, the likelihood of a short hospice stay increased over time. Hospice stays for 46,655 nursing home residents and 80,507 non-nursing home patients admitted to 21 hospices across 7 states and owned by 1 provider were examined. Logistic regression was used to determine the factors significantly associated with a higher probability of a short stay. Compared to patients admitted in 1995, the probability of a short stay increased in each year after 1995 in nursing homes and in 1999 in non-nursing home settings. In 1995, a nursing home resident admitted to hospice had a 26% probability of less than an 8-day stay, and this increased to a 33% probability in 1999. Increases in short stays raise concerns because, in addition to being inefficient, short stays provide less opportunity for hospices to provide high quality pain and symptom management. The findings suggest that providers may have contributed to the increase in the proportion of patients with short lengths of stay with hospice by responding to government monitoring via changes in admission and referral patterns. [Pub Med]
• 24. Parker-Oliver, D. Hospice Experience and Perceptions in Nursing Homes. Palliative Medicine; 2002; 5:5:713-720. Annotation The study describes the experience and perception of 69 hospice nurses and nurse managers in 24 hospices caring for residents in nursing homes. The study used a fax-back survey method to collect data. The findings show that the hospice staff found the attitude of the nursing home staff to be negative regarding hospice pain management, coordination, care planning, and philosophy. Hospice nurses felt the nursing home staff thought that hospice was a benefit to the residents and that the nursing home staff valued their assistance, but they reported frustration in caring for nursing home patients, especially in trying to control pain. They pointed out the need for good collaboration between hospice and nursing homes and looked to changes in some regulations which would better address the needs of residents at the end of life. [Pub Med]  
• 25. Parker-Oliver, D; Bickel, D. Nursing Home Experience with Hospice. Journal of the American Medical Directors Association; 2002; 3:46-50. Annotation In phone interviews, 60 administrators or directors of nursing from 42 nursing homes in Missouri were asked questions related to their overall experience with hospice, the benefits of hospice, hospice regulation and reimbursement, and perception of hospice staff’s pain assessments skills. The study found that only 38% of nursing management understood hospice reimbursement, 18% identified hospice as responsible for the care plan concerning terminal illness (as designated by Medicare), and 84% did not know the Department of Health was the survey agency responsible for hospice. When asked to rate the benefits of hospice, urban nursing homes rated hospice significantly higher than rural nursing homes. It also showed that nursing homes often overestimate their staff members’ abilities to assess pain and acknowledge hospice expertise. Overall, the nursing homes were positive about their experience with hospice, but the authors pointed to areas needing improvement. The authors conclude that nursing home management needs more education concerning hospice and more active participation in the hospice program in their nursing homes. [Pub Med]
• 26. Petrisek, AC; Mor, V. Hospice in Nursing Homes: A Facility-Level Analysis of the Distribution of Hospice Beneficiaries. The Gerontologist; 1999; 39:3:279-290. Annotation This paper first discusses the evolution and nature of hospice care in nursing homes. It then examines the distribution of hospice beneficiaries in nursing homes using HCFA’s OSCAR data (1995-97), which provides facility-level information for all Medicare/Medicaid certified nursing homes in the U.S. at the time of their Medicare/Medicaid survey. HCFA’s Hospice Provider of Service file and the Area Resource File data were also used. Multinominial logistic regression revealed the influence of organizational, market, and environmental factors on the proportion of hospice beneficiaries in nursing homes. Results indicate that 30% of nursing homes in the US in 1995-97 had residents enrolled in the Medicare hospice benefit. The significant variations in the distribution of recipients of hospice care among states and the factors found to be associated with greater hospice use suggest that the distribution of Medicare hospice beneficiaries in nursing homes may follow a financially-motivated path. [Pub Med]  
• 27. Reynolds, K; Henderson, M; Schulman, A; Hanson, LC. Needs of the Dying in Nursing Homes. Palliative Medicine; 2002; 5:6:895-901. Annotation Family members, nurses and aides were surveyed by interview after the death of residents from one of two participating nursing homes in this non-intervention, retrospective, descriptive study with 176 completed interviews. The questions assessed the palliative care needs of the dying resident during the last 3 months of life. Results showed 79% had an order to withhold resuscitation, 58% felt the resident had a "good death" defined "as they would have wanted." Pain (86%) was the most often reported physical symptom, and depressed mood (44%) was the most often reported emotional symptom. Personal cleanliness (81%), dyspnea (75%), incontinence (59%) and fatigue (52%) were also commonly reported. The report also showed efforts to improve end-of-life care in nursing homes should combine traditional palliative care services with increased attention to emotional symptoms and personal care services. [Pub Med]  
• 28. Sloane, PD; Zimmerman, S; Hanson, L; Mitchell, CM; Reidel-Leo, C; Curtis-Buie, V. End-of-Life Care in Assisted Living and Related Residential Care Settings: Comparison with Nursing Homes. Journal of the American Geriatrics Society; 2003; 51:1587-1594. Annotation This is a longitudinal study comparing the current state of end-of-life care in 55 assisted living and 26 nursing homes. Respondents included 224 staff members or family informants of 73 assisted living residents and 72 nursing home decedents. Telephone interviews were conducted to collect data on circumstances of death, perceptions of the dying process, cause of death, care during the last month of life, mood, discomfort and family satisfaction. More than half of the decedents were alone at the time of death. Compared to assisted living staff, nursing home staff members were more aware of the impending death. Family satisfaction was greater in assisted living facilities than in nursing homes. Tables show demographics, characteristics of death experience, assessment of discomfort, and family satisfaction. Overall, both settings were very similar in process and outcome. The authors concluded that aging and dying in peace can effectively occur in assisted living facilities. [Pub Med]  
• 29. Teno, JM; Clarridge, BR; Casey, V; Welch, LC; Wetle, T; Shield, R; Mor, V. Family Perspectives on End-of-Life Care at the Last Place of Care. Journal of the American Medical Association; 2004; 291: 1-7. Annotation This study evaluated the United States dying experience across sites of end-of-life care. Based on a nationally-representative sample, respondents for 519 decedents who died at home and 1059 who died in institutional settings were interviewed by telephone. The results showed over 70% of family members of patients receiving hospice care rated their overall quality of care as excellent, compared with less than 50% for those not receiving hospice care. The authors concluded that people dying in institutions have many unmet needs: physical and emotional symptoms, respect, and physician communication. Family members of those dying at home using hospice services reported a favorable dying experience. The authors expressed the need for a public health approach which would use a multifaceted and sustained intervention to improve end-of-life care in the United States. [Pub Med]
• 30. Teno, JM; Weitzen, S; Fennell, ML; Mor, V. Dying Trajectory in the Last Year of Life: Does Cancer Trajectory Fit Other Diseases? Palliative Medicine; 2001; 4:4:457-464. Annotation This study compared the difference in functional decline of persons dying of cancer and those dying of other leading, non-cancer causes of death using data collected from the mortality follow-back survey of next-of-kin of 3,614 decedents in the US. Results showed persons with non-cancer deaths had higher rates of functional impairment 1 year before death than did persons with cancer. Cancer patients began showing increased functional impairment 5 months before death. Cancer patients showed more precipitous declines, whereas the decline for those with non-cancer diagnoses was more gradual. [Pub Med]
• 31. Travis, SS; Bernard, M; Dixon, S; McAuley, WJ; Loving, G; McClanahan, L. Obstacles to Palliative and End-of-Life Care in a Long-Term Care Facility. The Gerontologist; 2002; 42:3:342-349. Annotation This exploratory, retrospective study used a set of 4 obstacle constructs to examine the end-of-life experience for 41 residents who died in a nursing care unit of a continuing care community. The obstacle constructs were 1) failure to recognize treatment futility, 2) lack of communication among decision makers, 3) no agreement on course for end-of-life care, and 4) failure to implement a timely end-of-life plan of care. When the obstacles to palliative care were quantified using descriptive statistics, a pattern of hierarchy of obstacles emerged. If there was one obstacle, it was always failure to implement a timely end-of-life plan of care; if two obstacles were present, they were usually agreement on course of care and failure to implement a timely end-of-life plan of care; if three obstacles were present, lack of communication of care was usually the third. [Pub Med]  
• 32. Travis, SS; Loving, G; McClanahan, L; Bernard, M. Hospitalization Patterns and Palliation in the Last Year of Life Among Residents in Long-Term Care. The Gerontologist; 2001; 41:2:153-160. Annotation This retrospective chart review study compares patterns of care, including hospitalization, for nursing home residents in the last year of life. Subjects received palliative care versus active treatment or blended care (active treatment plus palliative care). End-of-life experiences were examined for 41 residents who died within an 18-month period in one large continuing care community. Qualitative and quantitative methods of data collection and analysis were used to examine in-depth the end-of-life experience. The focus was on the transition from curative care to palliative care and emphasized the decisions that were made by the resident and caregivers. The results showed a need for change which would find better ways of helping families understand the futility of treatment and to recognize a need to shift to a palliative care goal. Schematics depict intervals in a resident’s Living-Dying Trajectory with treatment modalities depicted as the intervals progressed. The decision to hospitalize or not was discussed with attention to documentation of resident’s wishes. The study showed the importance of open communication among all decision makers and compliance by responsible parties. [Pub Med]
• 33. Wetle, T; Teno, J; Shield, R; Welch, L; Miller, SC. End of Life in Nursing Homes: Experiences and Policy Recommendations. Washington, D.C: AARP, 2004. Annotation This report describes end-of-life care in nursing homes from the perspectives of bereaved family members or others close to decedents. The primary data for this study were drawn from in-depth telephone interviews of 54 family members regarding the end-of-life care of loved ones who had spent time in a nursing home or assisted living facility during the last month of life (with and without hospice care). Interview data were matched to nationally representative quantitative survey data (n=1,578) to clarify trajectories of care, diagnoses and other factors. Hospice services were found to often enhance the end-of-life care of dying persons in nursing homes, but respondents reported referral is frequently late in the illness or not at all, preventing full benefit from such services. Also, conflicts are sometimes reported between hospice and nursing home staff. This report contains a detailed review of relevant literature; it reports on key findings (beyond the hospice findings) and makes policy and other recommendations for improving end-of-life care in nursing homes. AARP
• 34. Won, A; Lapane, K; Bernabei, R; Mor, V; Lipsitz, LA. Clinical Investigation: Correlates and Management of Nonmalignant Pain in the Nursing Home. Journal of the American Geriatrics Society; 1999; 47:8:936-942. Annotation This cross-sectional study of 49,971 nursing home residents in 4 US states measured pain, activities of daily living function, mood and time involved in activities using the SAGE database. Daily pain was reported by 26% of nursing home residents. The prevalence was less among men and minorities, who were also under-treated when pain was recognized. Fifty percent used physical and occupational therapy, which was 2 times higher than for those not in pain. It was concluded that recognition and treatment of pain needed to be improved. [Pub Med]