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manuscripts - studies

Selected Manuscripts and Studies Relating to Care in Nursing Homes and Assisted Living Communities

End-of-Life Care

 

  • 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. 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. 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. 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. 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. 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. 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. 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. “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.

End of Life and Systems of Care

 

  • 1. Beers, MH. Explicit Criteria for Determining Potentially Inappropriate Medication Use by the Elderly: An Update. Archives of Internal Medicine; 1997; 157:1531-1536. This study updates criteria regarding the appropriate use of medications for frail elderly. The author conducted a literature review to develop the criteria, submitted the criteria to reviewers, and sought consensus from 6 nationally recognized experts in geriatrics and pharmacology. The experts agreed on the validity of 28 criteria describing the potentially inappropriate use of medication by the general population and 35 criteria defining potentially inappropriate use of medication by the elderly known to have any of 15 common medical conditions. Tables of the final criteria independent of diagnosis and considering diagnosis are included. The author concludes that explicit criteria, such as drugs to be avoided by the elderly and dosage/frequency of administration, provide useful tools for assessing the quality of prescribing to older persons.[Pub Med]
  • 2. Billings, JA. What is Palliative Care? Palliative Medicine; 1998; 1:1:73-81. This essay brings together the definitions of palliative care and considers what the finer points of palliative care have become. The author compares and contrasts hospice and palliative care, and he discusses the new palliative care physician as a generalist with an area of special competence. He characterizes palliative care by dissecting the elements of definition and embracing the elements of diversity. He comments on the growth and acceptance of palliative care, citing multiple clinical centers, journals, books and a diversity of physicians as examples. [Pub Med]
  • 3. Kane, RA. Definition, Measurement, and Correlates of Quality of Life in Nursing Homes: Toward a Reasonable Practice, Research, and Policy Agenda. The Gerontologist; 2003; 43: Special Issue II:28-36. This theoretical analysis is based on the literature and the author’s own large scale studies on the quality of life in nursing homes. The author argues that the nursing home resident must have a say in his/her quality of life. She suggests 5 challenges for measuring quality of life: designing questions with appropriate response categories and time frames, developing a sampling strategy, aggregating information at the individual and facility levels, validating what are ultimately subjective constructs, and developing an approach using observation and proxies to assess quality of life for those unable to speak for themselves. She emphasizes that nursing home policy which present barriers to good quality of life should be reviewed and that good research protocols are needed both in methodological research and in the study of the correlates of quality of life. [Pub Med]

General Nursing Home / Assisted Living Care – Not Specific to End-of-Life Care

 

  • 1. Katz, TF; Walke, LM; Suri, R; Bellin, E; Jacobs, L. Goals of Care for Hospitalized Nursing Home Residents. Journal of the American Geriatrics Society; 2001; 49:6:837-838. Given that only 5% of the geriatric population represented $53 billion in health care expenditures in 1990, the authors conduct a pilot study to examine the goals of care for hospitalized nursing home residents using a questionnaire to measure quality of life, functional status, initial agreement that patient would recover from present illness, and use of invasive procedures. Residents, family members, and physicians were surveyed. The results suggest that there was considerable disagreement between physicians and family of impaired residents on goals of care.[Pub Med]
  • 2. Schnelle, JF; Simmons, SF; Harrington, C; Cadogan, M; Garcia E; Bates-Jensen, BM. Relationship of Nursing Home Staffing to Quality of Care. Health Services Research; 2004, April; 39:2:225-250. This non-intervention study compares nursing homes that report different staffing statistics on quality of care. Data on nursing home staffing was gathered from California state cost reports and interviews. Research staff collected data describing quality of care related to 27 care processes by direct observation, resident and staff interviews, and chart abstraction methods. Of the 21 participating nursing homes, two groups [high-staffed homes (n=6) and low-staffed homes (n=15)] reporting different and stable staffing were compared on quality of care measures. The findings show significantly better performance of the high-staffing group on 13 of16 processes compared to the low- staffing group, and high-staffed homes provided better care than all the other homes. The major difference was in the number of hours per patient per day spent by nursing aides (4.5-4.8 hours for high-staffed homes versus 2.8 or less for low-staffed homes); above 2.8 hours was associated with better care. Comprehensive tables on facilities and demographics, staffing, and observation and interviewing measurement domains are provided. [Pub Med]
  • 3. Weissman, DE; Griffie, J; Muchka, S; Matson, S. Improving Pain Management in Long-Term Care Facilities. Journal of Palliative Medicine; 2001; 4:4:567-573.

Advanced Care Planning in Nursing Homes

 

  • 1. Allen, RS; DeLaine, SR; Chaplin, WF; Marson, DC; Bourgeois, MS; Dijkstra, K; Burgio, LD. Advance Care Planning in Nursing Homes: Correlates of Capacity and Possession of Advance Directives. The Gerontologist; 2003; 43:3:309-317. This observational, cross section cohort study was designed to identify residents with the cognitive ability to participate in their own advance care planning. Seventy-eight residents and their proxies participated from five nursing homes. Data was collected from chart review, proxy interviews, resident assessment using a decision capacity assessment tool, direct observation of behavior, and certified nursing assistant surveys. Capacity assessment showed 84.4% of the residents could state a simple treatment preference but could not understand treatment alternatives or appreciate the implication of their choice. Proxies were generally less religious than residents. Fifty percent of the African-American residents were dropped from the study because of lack of familial proxy, as compared with 11.5% of white residents. Residents were more likely to possess advance directives if proxies possessed advance directives. It was concluded that decisional capacity assessments should be designed which would enhance the verbal ability of the resident with dementia by reducing reliance on memory, thus giving the resident a part in his/her end-of-life planning.[Pub Med]
  • 2. Cohen-Mansfield, J; Libin, A; Lipson, S. Differences in Presenting Advance Directives in the Chart, in the Minimum Data Set, and through the Staff’s Perceptions. The Gerontologist; 2003; 43:3:302-308. Ability to quickly access directives regarding end-of-life care of the individual resident depends on where the directive is located within the chart and whether there is discrepancy between the chart cover information and what is contained in the advanced directive, the MDS, and other sources. This study proposed to clarify how advanced directives are summarized and how physicians view these directives. The charts of 122 residents from a large 587-bed nursing home were reviewed, looking at advance directives from the front cover, the MDS, and inside the chart. Results show a higher agreement of information between the inside of the chart and the front cover than between the MDS and either the front cover or inside the chart. This study suggests that the care of a patient may be determined by the location of the advance directive information, the source, and the quality of the chart. Disagreement was also found between the physician’s reports and data found from the inside and front cover of the chart. Much of the discrepancies lie in the frequency of updating the chart. [Pub Med]
  • 3. Gillick, MR. Adapting Advance Medical Planning for the Nursing Home. Innovations in End-of-Life Care; 2003; 5:3:www.edc.org/lastacts. The author argues that advance care planning in nursing homes, although improved since 1991, is lacking comprehensive levels of care planning which would address a range between supportive therapy and maximal medical care. Many nursing homes have adopted the designation of a health care proxy and/or institution of a do-not-resuscitate order but lack a comprehensive care plan. Nursing homes offering “levels of care” have been generally accepted by residents and family, but these levels are often hierarchical and intervention-specific which does not allow for individualized decision making. The author suggests three goals--maximizing comfort, maintaining function, and prolonging life--and argues that patients and families need to be asked to prioritize these goals. Barriers to goal planning include the need to interpret a goal-based plan (vs. following intervention-specific directives) and the occurrence of a “must happen” conversation among resident, family, staff and physician. Strategies for making advance care planning effective are: 1) build on the “levels of care” approach by linking it to a resident’s care goals, 2) create a process to advance medical planning consistent with the culture and organization of the nursing home, and 3) make recommendations to families and residents regarding an appropriate level of care in order to facilitate the planning process regarding levels of care and patient’s health status.[Pub Med]
  • 4. Happ, MB; Capezuti, E; Strumpf, NE; Wagner, L; Cunningham, S; Evans, L; Maislin, G. Advance Care Planning and End-of-Life Care for Hospitalized Nursing Home Residents. Journal of the American Geriatrics Society; 2002; 50:829-835. The authors described advance care planning and end-of-life care for 43 nursing home residents hospitalized in the last 6 weeks of life. Trained nurses utilized a constant comparative method to review data from patients’ records and advance practice field notes. Results reveal distinct characteristics and transition points for frail nursing home residents in advance care planning and end-of-life care. These transition points include nursing home admission, hospitalization, acute illness, and decline toward death. Two major trajectories were revealed--a slow decline with more rapid progression near end-of-life and a rapid, steady decline over a 3 month period. Both were brought on by an acute event. Although 29 residents formally rejected CPR, few had “comfort care only” designations before hospitalization. Case histories are included. The authors conclude that there are critical junctures within the residents nursing home stay when advance care planning can be pursued and future interventions targeted.[Pub Med]
  • 5. McAuley WJ; Travis, SS. Advance Care Planning among Residents in Long-Term Care. American Journal of Hospice and Palliative Care; 2003; 20:5:353-359. This study focused on 2 types of advance care directives: basic (i.e., a living will or do-not-resuscitate order) and progressive (i.e., do-not-hospitalize order or orders restricting feeding, medication, or other treatments). The basic advance directive is defined as an order triggered by knowledge of the disease and it’s course which would have no immediate impact on the care of the resident. The progressive order is based on a person’s futility assessment and would have direct impact on treatment. Results show that 60% of nursing home residents have some type of advance directive, with 59% having a basic advance directive and 9% having at least one of the more progressive advance directive (with or without a basic advance directive). The authors note that African Americans and residents with mental impairment usually do not have progressive advance directives.[Pub Med]
  • 6. Molloy, DW; Guyatt, GH; Russo, R; Goeree, R; O’Brien, BJ; Bédard, M; Willan, A; Watson, J; Patterson, C; Harrison, C; Standish, T; Strang, D; Darzins, PJ; Smith, S; Dubois, S. Systematic Implementation of an Advance Directive Program in Nursing Homes: A Randomized Controlled Trial. The Journal of the American Medical Association; 2000; 283:11:1437-1444. This randomized control trial examines the effect of systematically implementing advance directives in nursing homes based on 1,292 residents of six 100-plus-bed nursing homes in Ontario. The six homes were pair-matched on key characteristics, and one home per pair was randomly selected to take part. Satisfaction with care, cost, and mortality are measured. No special directions were given, and each nursing home continued its usual policy. The data suggest that systematic implementation of advance directives reduces health care services utilization without affecting satisfaction or mortality.[Pub Med]
  • 7. Volicer, L; Cantor, MD; Derse, AR; Edwards, DM; Prudhomme, AM; Gregory, DCR; Reagan, JE; Tulsky, JA; Fox, E. Advance Care Planning by Proxy for Residents of Long-Term Care Facilities who Lack Decision-Making Capacity. Journal of the American Geriatrics Society; 2002; 50:761-767. The focus of this study examines progressive advance care planning and whether long-term care facilities should seek proxies for residents lacking the decision-making capacity to implement such planning. A “proxy” is defined as the person who is best qualified to speak for the resident. The article discusses families, state statutes, case law, and current practices in several Veterans Health Administration (VHA) nursing homes. The authors describe “the Oregon Experience,” an effort to develop and implement Physician’s Orders for Life Sustaining Treatment (POLST) in long-term care facilities. Three focus groups involving 20 healthcare providers from 10 Veterans Administration facilities met regarding current proxy planning practices. The authors report that none of the focus group members knew of any VHA policies supporting an advance plan by proxy. Results also show that signatures of proxy decision makers were rarely required. The authors recommend an 11-point minimum criteria for initiating a process of developing an advance care plan for residents of long-term care who lack capacity to make decisions.[Pub Med]

Health Care Expenditures at End-of-Life and Long Term Care/Aging

 

  • 1. Banaszak-Holl, J; Mor, V. Differences in Patient Demographics and Expenditures Among Medicare Hospice Providers. The Hospice Journal; 1996; 11:3:1-19. This is a comparative study using a randomized 5% sample of all hospice Medicare beneficiaries identified from the Continuous Medical History Sample. The Continuous Medical History Sample examines the differences in demographics and Medicare expenditures for beneficiaries in 4 different types of hospice programs: hospital, skilled nursing, home health, and freestanding. The authors report a greater growth in the use of hospice care in hospitals and nursing homes. This growth in hospice care also revealed a greater increase in minority and female use. The authors conclude that the increase in institutional use was the result of the expansion of the hospice Medicare benefit; however, the cost savings remains greater in home-based rather than institutional-based hospices. The authors discuss indications of differences in costs among providers of the same type. [Pub Med]
  • 2. Hogan, C; Lunney, J; Gabel, J; Lynn, J. Medicare Beneficiaries’ Costs of Care in the Last Year of Life. Health Affairs, Data Watch; 2001; 20:4:188-195. The authors profiled the end-of-life costs for Medicare beneficiaries in the last year of life. They found that the cost for persons who died was only slightly higher than for survivors with similar diagnoses and characteristics. Thirty-eight percent of Medicare beneficiaries had some nursing home stay in the last year of life. Hospice use among Medicare decedents rose from 11% in 1994 to 19% in 1998, and half of Medicare decedents who died from cancer utilized hospice. African Americans had much higher (28%) end-of-life costs than others. [Pub Med]
  • 3. Lunney, JR; Lynn, J; Hogan, C. Profiles of Older Medicare Decedents. Journal of the American Geriatrics Society; 2002; 50:1108-1112. This report utilizes Medicare claims data for a 0.1% random sample of all expenditures of Medicare beneficiaries from 1993-1998. The sample contained 7,966 decedents. The authors evaluate a scheme to clinically classify decedents into 4 end-of-life categories: sudden death, terminal illness, organ failure, and frailty. Health care use and costs were compared for each category. The differences among the categories were used to evaluate expenditures and develop strategies to improve care at the end-of-life. The results show that the categories represented 92% of the decedents across substantial clinical differences and captured the patterns of demographics, care delivery, and Medicare expenditures. While this analysis does not include non-Medicare expenses, the diagnoses within the frail group (which comprised more than 50% of all groups) suggests a high prevalence of need for nursing home care, assistance with activities of daily living, and 24-hour supervision. [Pub Med]
  • 4. Yang, Z; Norton, EC; Stearns, SC. Longevity and Health Care Expenditures: The Real Reasons Older People Spend More. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences; 2003; 58B:1:S2-S10. In this longitudinal analysis, the authors compare the age and time of death of 25,994 elderly Medicare beneficiaries to health care expenditures using person-month level data from the 1992-1998 Medicare Current Beneficiary Survey Cost and Files. The survey combined demographics and insurance coverage with Medicare claims data and self-report survey information on resource use and health care expenditures, including nursing home and prescription drugs. The authors look at differences in expenditures at times close to death and times not close to death. The results show that time close to death is the main reason for higher inpatient care expenditures, whereas aging is the main reason for higher long-term care expenditures. [Pub Med]

Interdisciplinary and Inter-organizational Collaboration

  • 1. Reuben, DB; Levy-Storms, L; Yee, MN; Lee, M; Cole, K; Waite, M; Nichols, L; Frank, JC. Disciplinary Split: A Threat to Geriatrics Interdisciplinary Team Training. Journal of the American Geriatrics Society; 2004; 52:1000-1006.