1. Brock, DB; Foley, DJ; Salive, ME. Hospital and Nursing Home Use in the Last Three Months of Life. 1996; Journal of Aging and Health; 8:3:307-319.[Annotation]
This retrospective study examined the number of moves decedents made from home, nursing home, and hospital in the last 90 days of life. The sample of 1,227 decedents came from The Survey of the Last Days of Life (SLDOL) Health Service Area #1, Fairfield County, CT. Standardized telephone interviews were conducted with the next-of-kin or another knowledgeable informant 3 months after the death. Three-fourths of decedents made one transition to or from a health care facility in the last 90 days of life, and the most frequent transition was from residence in the community to a hospital for terminal care of about 2 weeks duration. Dementia, incontinence, disability, and few social ties, and older age were associated with receiving institutionalized care for the last 90 days of life. The authors conclude that reductions in nursing home care, rather than hospital care, is the most likely opportunity for cost savings in the final months of life. [Pub Med]
2. Forbes, S; Bern-Klug, M; Gessert, C. End-of-Life Decision Making for Nursing Home Residents with Dementia. The Journal of Nursing Scholarship; 2000; 32:3:251-258.[Annotation]
This qualitative study described the decision-making processes of family members of nursing home residents with moderately severe to severe dementia. Data is from 4 focus groups of 28 family members of residents from 4 racially and economically diverse nursing homes in the Midwest. Five themes emerged from the data: emotional effect, insult to life story, two faces of death, values and goals regarding end-of-life treatments, and unrecognized trajectory of dying. Quotes from various interviews show the emotional conflicts experienced by the family members. Most viewed the journey as unwelcome, unfamiliar, and arduous. Few had advanced care directives. The authors conclude that professionals should be better trained in end-of-life issues and should be better equipped to assist family members in processing their emotions surrounding their loved ones’ illness, in understanding the disease trajectory, and in the decision making. [Pub Med]
3. Hurley, AC; Volicer, L; Blasi, Z. End-of-Life Care for Patients with Advanced Dementia. The Journal of the American Medical Association; Res Let; 2000; 284:19:1-3.[Annotation]
This letter to the editor reports between 2.5 and 4 million dementia patients in the US need end-of-life care. The US Department of Veterans’ Affairs and the Alzheimer’s Association convened an advisory board to examine the current state of end-of-life care for dementia patients. Information was summarized, desired outcomes were defined, areas deficient for end-of-life care were identified, and a consensus statement was drafted. The authors stated the US health care system must attend to these needs and develop policies to promote compassionate high-quality care. [Pub Med]
4. Kaasa, S. A Systematic Approach to Palliative Care in a Hospital and Community Setting. In, Innovations in End-of-Life Care: Practical Strategies and International Perspectives. Romer, AL; Heller, KS; Weissman, DE; Solomon, MZ (Eds); 2002; 85-95; Mary Ann Liebert, Inc., publisher.[Annotation]
This chapter describes a new type of palliative care setting somewhat between a hospital and a nursing home located in Trondheim, Norway. The chapter discusses the type of patient served, how the palliative care services are rendered and organized, the role of the specialists, barriers to access, integration of pain and palliative care, and differing levels of care. Standards and international differences are compared.
5. Kayser-Jones, J; Schell, E; Lyons, W; Kris, AE; Chan, J; Beard, R; Factors That Influence End-of-Life Care in Nursing Homes: The Physical Environment, Inadequate Staffing, and Lack of Supervision. The Gerontologist; 2003; 43, Special Issue II: 76-84.[Annotation]
This end-of-life study was conducted in 2 large proprietary nursing homes chosen to provide variation in resident, provider and setting characteristics. A profile of 117 residents who died during the data collection period was shown. Residents, families, and staff were observed and interviewed using event analysis. This method allowed the authors to observe prospectively the factors that influenced the care of the residents who were dying, to interview those involved in their care, and to understand how multiple factors influence end-of-life care. Field notes, event analysis and interview data were analyzed. Several case studies were presented. Basic nursing care (such as bathing frequency, oral hygiene, and providing adequate fluids) was observed. The findings show that both nursing homes were inappropriate settings to ensure adequate end-of-life care because adequate staffing and professional supervision was lacking, rooms were crowded, privacy was limited, personal care was not adequately provided, and the facilities were noisy. [Pub Med]
6. Lynn, J. An 88-Year Old Woman Facing the End of Life. The Journal of the American Medical Association; 1997; 277:20:1633-1640.[Annotation]
This discussion was the result of a “Clinical Crossroads: conference between a patient, her family, and her doctor. The 88-year old patient was near the end-of-life and living in an assisted living facility where she would have liked to have stayed as long as possible. The doctor gave a brief description of the woman’s background and health status. Her daughter discussed her understanding and perceptions of her mother’s present life. Neither the patient nor her daughter was interested in lengthy discussions of death. With this as a backdrop, Dr. Lynn discussed how to focus attention on how to best serve those with “slowly fatal” conditions. The article goes on to discuss diagnosis and prognosis, a good life at the end-of-life, clinical strategies, communication and advance care planning. Nursing homes, rather than hospitals, are increasingly becoming the place of death for the elderly. The author cautions that care must be taken to assure that moving the patient from the hospital to the nursing home is not simply a way to cut hospital costs without providing appropriate care. The article further discusses physician assisted suicide and concludes with a proposition called “Medicaring”--a system that would provide comprehensive services to people who are seriously, chronically ill with an illness that will take their life; it would also ensure spiritual counseling and support for families. [Pub Med]
7. Moss, MS. End of Life in Nursing Homes. In Annual Review of Gerontology and Geriatrics: Focus on The End of Life, Scientific and Social Issues, 2000; 20:10:224-258; New York: Springer Publishing Company.[Annotation]
This chapter discusses dying, death and bereavement in the nursing home. The author looks at nursing home residents and the frequency of death and asks the question, “Why is there so little research being done in the field?” She also summarizes what is known of end-of-life care in nursing homes. Finally, the chapter examines aspects of end-of-life care from the purview of residents, staff, and family with some focus on residents with dementia; it concludes with ideas for the future.
8. Moss, MS; Braunschweig, HM; Rubinstein, RL. Terminal Care for Nursing Home Residents with Dementia. 2002; Alzheimer’s Care Quarterly; 3:233-246.[Annotation]
“Nursing homes are places of living and of life, and they are also places of dying”. The researchers initially conducted qualitative audio recorded interviews with a senior staff member at 50 randomly selected nursing homes using the HCIA directory. Next they review surveys obtained from 400 nursing home respondents who completed mail questionnaires. The study focuses on nursing home characteristics and staff perceptions with special attention paid to the terminally ill patients with dementia. The topics included attitude, staff training, policies, case study, best and worst practices, and sensitivity. Most respondents were administrators, directors of nursing, or social workers. The roles of hospice and palliative care as well as family support are mentioned. The results show that 74% of resident deaths occurred in the nursing home as opposed to the hospital and that 44% of the decedents had dementia. Over half the nursing homes interviewed had policies on terminal care; however, only 7% had policies related to dementia deaths. The results show training of staff specifically around care of the residents with dementia along with spiritual support and spending extra time with the dying resident were handled least well. Authors also report the need for care of the surviving residents after the death of another resident. The authors suggest that hospice could play a significant role in the care of dying nursing home residents with dementia.
9. Zimmerman, S; Sloane, PD; Hanson, L; Mitchell, CM; Shy, A; Staff Perceptions of End-of-Life Care in Long-Term Care. Journal of the American Medical Directors Association; 2003; 4:23-26.[Annotation]
Phone surveys were conducted with 99 assisted living facility or nursing home staff members (including administrators, nurses, aides, social workers, and other staff) from 74 residential care/assisted living facilities and nursing homes as part of a larger cohort study. The survey questions addressed 11 areas of end-of-life care. The items most important to the staff were the need for more staff and the need for more education of the staff. Those surveyed were most interested in being able to provide quality care throughout a resident’s life. Nursing home staff perceived a greater need for improvement in all areas than did residential care/assisted living facilities. Hospice care and need for staff to attend funerals were viewed as least important. [Pub Med]
