Preferences for end-of-life care among community-dwelling older adults and patients with advanced cancer: A discrete choice experiment

Singapore is in the midst of several healthcare reforms in efforts to finance and deliver health services for a rapidly aging population. The primary focus of these reforms is to make healthcare services, including those at the end of life (EOL), affordable. Given the increasingly high health care costs at the EOL, policy makers need to consider how best to allocate resources. One strategy is to allocate resources based on the preferences of sub-populations most likely to be affected. This paper thus aims to quantify preferences for EOL care both among community dwelling older adults (CDOAs) and among patients with a life-limiting illness. A discrete choice experiment was administered to CDOAs and advanced cancer patients in Singapore and willingness to pay (WTP) for specific EOL improvements was estimated. We find that patients have a higher WTP for nearly all EOL attributes compared with CDOAs. We also show that, for both groups, moderate life extension is not the most important consideration; WTP for one additional life year is lower than common thresholds for cost-effectiveness. Irrespective of whose preference are considered, the results highlight the importance of pain management and supporting home deaths at the EOL, perhaps at the expense of public funding for costly but only marginally effective treatments.     

Characteristics of dementia end-of-life care across care settings

End-of-life care for persons with dementia in different care settings was retrospectively surveyed. In this sample, care recipients receiving hospice care and pain control stayed at home longer and were more likely to die at home. Psychiatric symptoms increased caregiver burden and were the most common reason for admission to an institution, and psychiatric care was associated with longer stay at home. Presence of advance directives decreased hospital stay and increased the likelihood of dying in a nursing home. Care recipients dying at home had fewer symptoms and less discomfort than care recipients dying in other settings. These results indicate that quality end-of-life care can be provided at home and is facilitated by hospice programs, effective pain control, and psychiatric care.     

Investigating the educational needs of licensed nursing staff and certified nursing assistants in nursing homes regarding end-of-life care

Nursing homes care for people at the end of life (EOL). There is evidence to suggest, however, that nursing staff in these settings is often unprepared to provide a high level of EOL care. This article reports the findings from three preliminary studies that investigated the needs of licensed staff and certified nursing assistants in nursing homes regarding EOL care. The studies involved needs assessment surveys, focus group interviews with staff members, and telephone interviews with nursing home administrators. Data show that the major needs included a lack of knowledge and skills in symptom management; communication difficulties; conflicts with families and physicians; and emotional distress in dealing with time constraints and attachment to residents. Implications for nursing home staff education are described.     

The relationship between agency characteristics and quality of home care

BACKGROUND: This project assessed the relationship between home care quality indicators (HCQIs) and agency characteristics. METHODS: Twelve agencies completed a mailed survey on a variety of characteristics, including size of their caseload and for-profit (FP) status of contracted service providers. The HCQIs were derived from standardized assessments completed voluntarily for home care clients in Ontario and in Manitoba, Canada. RESULTS: The average caseload was 121.3 clients per case manager, and over 40% of nursing, personal support and therapy providers were considered FP. For individual HCQIs, few correlations were statistically significant. An overall summary measure of quality was correlated with the size of the population served (r = -0.80; p < 0.05) and the number of clients per case manager (r = -0.56; p < 0.1). CONCLUSION: These data represent unique information on home care quality and organizational characteristics in Canada. The question remains as to how best to use HCQI data to inform practice in an era of limited resources and increasing caseloads.     

Perceptions of Quality of Care for Serious Illness at Different Levels of Facilities in a Rural Area of Bangladesh

This study was conducted to explore care-seeking for perceived serious morbidities and users'' perceptions about quality of care at different facilities in Matlab, Bangladesh. This is a secondary analysis of baseline community survey data of the Matlab Essential Obstetric Care Project conducted in 2001. Principal component and factor analysis methods were used for computing summary quality and socioeconomic indicators. During perceived serious morbidity of any household member within the last one year, 88.1% (776/881) used health resource outside home. Of them, 25.6% visited informal care providers, 17.8% peripheral public facilities, 7.9% tertiary hospitals, 7.3% facilities of non-governmental organizations, and 41.4% private facilities as the highest healthcare resources. Socioeconomic status and type of morbidity were significant predictors for choice of the highest level of care. Most (86.1%) of those who sought care outside the home were satisfied with the quality of services provided for their last serious morbidities. Users of organized private-sector and tertiary facilities perceived the quality of services better than users of informal care providers and peripheral public facilities. Behaviour and attitude of the service providers and availability of medicines were significant predictors for perceived quality of care. Peripheral public-health facilities were of poor quality and grossly under-used. Further research should explore the technical aspect of quality of care in different facilities, along with perceptions of service providers to design client-focused interventions to impact the use of healthcare services. There is no reason to overlook informal care providers, they should rather be trained and monitored.Key words: Healthcare, Healthcare-seeking behaviour, Health services, Patients'' satisfaction, Quality of care, Bangladesh     

Cancer home care in Montana

Availability of health care services in sparsely populated areas may be limited by fewer health care organizations and geographic separation. The purposes of this study were to identify unmet needs of individuals and families managing cancer in rural areas and examine cancer-related home care in rural areas. Issues of staffing, caseloads and service area for home health agencies (HHAs) and hospices were examined. HHAs registered with the Montana Association of Home Health Care Agencies and licensed hospices in Montana were mailed questionnaires with 92% of the HHAs and 90% of the hospices returning the questionnaires. Health providers identified a variety of unmet needs including personal care and respite. Agencies were small with approximately four full-time equivalent registered nurses for HHAs and one full-time equivalent registered nurse for hospices. Similarly, caseloads were also small with an average of 50 clients per month for HHAs and 11 clients per month for hospices. HHAs and hospices had large service areas with two of the HHAs each serving seven counties. Implications of these findings for research and practice are discussed.     

Pre-admission screening of nursing home applicants: implications for home care.

An increasing number of states are developing programs to evaluate nursing home applicants prior to admission. The purpose of these Pre-Admission Screening (PAS) programs is to assure that nursing home placement is needed and appropriate. Both the number and scope of these programs have grown considerably in the last decade as states attempt to reduce inappropriate placements and control nursing home costs and utilization. The increase in PAS can have a significant impact on community services as clients are diverted from nursing homes to home care. This article uses the results of a recently completed national survey of state-administered PAS programs to indicate the impact of PAS on community care. PAs was defined as an on-site assessment of the need or appropriateness of nursing home care conducted by a disinterested third party prior to nursing home admission. State administrators of Medicaid and/or PAS in all states and the District of Columbia were contacted by phone to determine whether or not their state conducted PAS. States with PAS were sent a comprehensive mail survey, and 25 of these (81%) returned a survey. Data is presented regarding the scope of PAS programs, the types of clients participating in PAS, the variety of services coordinated or funded in conjunction with PAS, the types of recommendations made by screening teams (institutional vs. home care), and how respondents felt that PAS was impacting community services. The article concluded with a discussion of these results.     

Filling the gaps. Systems offer two models of care management: community outreach and inpatient care

The growing number of vulnerable people, such as the elderly and people with long-term disabilities, calls for healthcare providers to offer more programs to ensure a continuum of care. Client-focused care management programs offer access to such a continuum. Care managers understand services and reimbursement and can pull it all together for the client. The Sisters of Charity Health Care Systems, Cincinnati, have two models of care management. St. Joseph Coordinated Care provides extensive outreach to a large, culturally diverse New Mexico community, serving urban and rural clients. Penrose-St. Francis Healthcare System offers inpatient medical care management in Colorado. Coordinated Care at St. Joseph Healthcare System in Albuquerque is comprehensive, covering a wide spectrum of client needs--medical, social, and psychological. The program's central goal is to help individuals remain safely at home. Persistence and devotion to the client are the hallmarks of effective care management and the foundation of the new geriatric care management program at Penrose-St. Francis Healthcare System in Colorado Springs, CO. The program's goals are to improve inpatient geriatric care, smooth the patient's transition to alternative care settings, and ensure efficient and effective resource use during the patient's hospital stay.     

Assessing quality of end-of-life hospital care in a southern European regional health service

OBJECTIVES: During the final period of life, patients with cancer in the Basque Country are given treatment in different types of hospital care. This study compared the quality of care according to the type of care in one of the autonomous communities in Spain. METHODS: A retrospective study was carried out of cancer patients who died in conventional hospital services, home hospitalization services, and palliative care units. In addition to hospital stay and readmission number, variables based on the recommendations of Spanish Society for Palliative Care were studied. RESULTS: End-of-life was diagnosed in 57 percent of a sample of 486 patients, 3 days before death (median). The use of symptom control scales was only documented in the clinical records of eight patients. Sociofamily evaluation was not found. Patients in conventional hospital services were less frequently diagnosed with end-of-life and agony and were significantly different from the rest in the reasons for admission, symptoms assessed, drugs used, administration routes, and dosage forms. Pain was evaluated in 50 percent of the patients and was better controlled in palliative care units. Patients not diagnosed with agony (52 percent) were more frequently not given specific treatment. CONCLUSIONS: End-of-life in cancer patients was diagnosed too late. The quality of care in palliative care units and by home hospitalization service was better than that in conventional hospitalization. Nevertheless, there were areas for improvement in the three modalities of care.     

Explaining regional variation in home care use by demand and supply variables

In the Netherlands, home care services like district nursing and personal assistance are provided by private service provider organizations and covered by private health insurance companies which bear legal responsibility for purchasing these services. To improve value for money, their procurement increasingly replaces fee-for-service payments with population based budgets. Setting appropriate population budgets requires adaptation to the legitimate needs of the population, whereas historical costs are likely to be influenced by supply factors as well, not all of which are necessarily legitimate. Our purpose is to explain home care costs in terms of demand and supply factors. This allows for adjusting historical cost patterns when setting population based budgets.Using expenses claims of 60 Dutch municipalities, we analyze eight demand variables and five supply variables with a multiple regression model to explain variance in the number of clients per inhabitant, costs per client and costs per inhabitant.Our models explain 69% of variation in the number of clients per inhabitant, 28% of costs per client and 56% of costs per inhabitant using demand factors. Moreover, we find that supply factors explain an additional 17–23% of variation. Predictors of higher utilization are home care organizations that are integrated with intramural nursing homes, higher competition levels among home care organizations and the availability of complementary services.     

Staff perceptions of end-of-life care in long-term care

OBJECTIVE: Although residential care/assisted living facilities and nursing homes have increasingly become a significant site of death for older Americans, little is known about staff perceptions of end-of-life care, perceived need for improvement in care, and differences by type of setting. DESIGN, SETTING, AND PARTICIPANTS: Ninety-nine staff provided their perceptions of end-of-life care for 99 decedents from 74 residential care/assisted living facilities and nursing homes in four states as part of a larger cohort study. Staff were interviewed retrospectively regarding care provided during residents' last month of life. MEASUREMENTS: Staff reported on 11 areas of end-of-life care, describing the importance of each area and the level of improvement they felt was indicated. Weighted "need for change" scores were calculated as the product of perceived importance and need for improvement. RESULTS: Both residential care/assisted living and nursing home staff reported a need for more staff education and nursing assistant time, as well as more use of volunteers. The two lowest ranked items for both facility types were involvement of hospice and encouragement for staff to attend funeral services. Nursing home staff perceived a greater need for improvement than residential care/assisted living staff in all 11 areas. CONCLUSION: Results underscore the staffing demands of end-of-life care across facility types, and staff desires to be able to provide quality care throughout the dying process.     

The evaluation of the National Long Term Care Demonstration. 3. Recruitment and characteristics of channeling clients.

The National Long Term Care Demonstration (channeling) was designed to provide coordinated community-based long-term care services to those older persons at high risk of nursing home placement. A key component of the program was the process established to accomplish this targeting effort. In this article, the outreach and eligibility procedures developed in the demonstration are described. Characteristics of channeling clients are compared to those of clients from other long-term care demonstrations, a national nursing home sample, and a simulated national sample of functionally impaired older persons. Results indicate that the channeling clients were quite frail, more so than the clients served in most of the other long-term care demonstrations, but were younger, slightly less disabled, and more likely to be married than a national sample of nursing home residents.     

The effect of quality of care on contraceptive efficacy

Effective contraception benefits individuals, communities, and humankind. Access to family planning and quality care are human rights. High quality care is especially important to ensure safety and client satisfaction. Contraceptive efficacy is therefore related not only to actions taken by clients, but also to the actions of providers and managers of family planning services. Motivated and satisfied clients are more likely to use contraception consistently and correctly. In one way or another, all aspects of the quality of care provided have an impact upon efficacy, including the quality of information and counseling provided, the accessibility of services, the technical competence of the service providers, the quality and range of contraceptives available, the continuity of services, and any other aspect of quality of care which may influence client motivation and satisfaction. Information and counseling, technical competence, access, and supply issues are discussed.     

Acute health care service use among elderly home care clients

Utilization of acute health care services accounts for a substantial proportion of health expenditures in Canada, and is associated with compromised health and autonomy for older persons. Using the Resident Assessment Instrument for Home Care (RAI-HC), this cross-sectional study of 683 elderly home care recipients sought to distinguish clients who were more likely to use acute health care services; i.e., hospital admissions, emergency room visits. Clients with nutritional problems were 2.58 times more likely to have used acute health care services than clients without nutritional problems. Among clients with a poor social support system, those with nutrition problems were 5.95 times as likely to have used acute health care services. Poor self-rated health, and greater functional dependency were also signif- icantly associated with acute health care use. This study provides a profile of elderly home care clients who are at risk of using acute health care services, which may facilitate targeted efforts to prevent unplanned acute health care use.     

Providers' evaluations of family day care services

Family day care is an informal and largely unregulated form of child care with providers a key element in creating effective programs. Relatively little is known of how providers perceive the needs of clients [parents and children] and how they evaluate the adequacy of their services in meeting family needs. Thirty-two registered home providers estimated parents' reasons for selecting family day care, and the degree to which their services met parents' and children's needs for care. They also evaluated the importance of program goals and provider qualifications and indicated their experience and training for day care. Knowledge of providers' perceptions of the quality of their services and their ability to meet client needs can help educators create training programs with appropriate content and format.     

Public health nurses' activities after the initiation of long-term care insurance (Part 1). Focus on operations for long-term care insurance

OBJECTIVE: We conducted a nationwide questionnaire survey to elucidate the present status of public health nurses (PHNs) after initiation of the Long-Term Care Insurance (LTCI) system, in order to study the influence of the allocation of PHNs upon the performance of the system. METHODS: In March 2001, a questionnaire was mailed to 1,344 municipalities throughout Japan (all cities and 23 wards in Tokyo; one quarter of towns/villages). RESULTS: Responses to the questionnaire were received from 569 (42.3%). The largest percentage (36.4%) of PHNs was assigned to Elderly Health, 29.8% was assigned to Maternal and Child Health, and 10.2% assigned to the LTCI. Among LTCI operations, follow-up of individuals not certified as requiring care, guidance for the family caregiver, and counseling/grievance procedures were performed with participation of PHNs in more than 80% of municipalities. In urban areas, PHNs participated in training/guidance/advice for care certification investigators/care managers, guidance for service providers, and preparation/coordination for the Certification Committee for Long-Term Care Need in 60-80% municipalities, while those who participated in these activities were only 30-60% in towns/villages. The participation ratios were highest in municipalities where PHNs were allocated to the LTCI department for almost all of the activities except individual counseling. More PHNs from LTCI departments participated in certificating of care need and improving quality of care plans/services than from other departments in offices of municipalities. On the other hand, more PHNs in Welfare or Public Health-Welfare sections than in the LTCI were involved in individual counseling, guidance for both clients and caregivers, or in case management. Training or guidance for service providers was conducted in nearly 50% of municipalities and the performance rates were lower in towns/villages. In open-ended items of the questionnaire, the following problems were mentioned: difficulties in collaboration between sections; large workloads for certification of care need/care management, and difficulties in capturing information about clients. CONCLUSION: The allocation of PHN influences the activities of the LTCI system, especially in relation to quality assurance. Recently, the sections to which PHNs are posted have expanded to include LTCI and Welfare. While improvement in the quality of LTCI services is anticipated, efforts are needed to strengthen collaboration among different departments. In towns/villages, performance rates of activities such as guidance for service providers of LTCI are low, suggesting the support from prefectural health centers in necessary.     

De-institutionalization and ageing: some results from monitoring the effects in an area-based system of long-term care for elderly people and people with disabilities

This paper illustrates the usefulness of regular monitoring for an area-based system of long-term care for elderly people and people with a disability by presenting data which describe the combined effects of de-institutionalization and population ageing. Data were collected between 1985 and 1989 in Solna, Sweden by means of annual surveys involving registraion of received services and assessment of needs and disability. The sample, (n=2026 year 1, n=1755 year 5), were all the residents of Solna, who, on the day of the survey, were in receipt of long-term public medical and/or social services care from the public sector. Data were collected on demographic variables, actual and appropriate levels of care. The class of disability was based upon five different measures of disability. The number of long-term care hospital and nursing home beds were reduced by 23% whilst the number of people aged over 85 in the area increased by 31%. This development had effects on all levels of care. Actual development of resources fell short of those projected according to population trends, by 15–35% depending on level of care. The proportion of clients, who were ‘under-served’, in the sense that they received a lower level of care than assessed as appropriate by the responsible staff, more than doubled during the period-increasing from 10(n=2026) to 21% (n=1755). Domiciliary services were actually reduced and concentrated on fewer clients with more severe disabilities. There was a general increase in the prevalence and severity of disability in all levels of care except sheltered housing. Incontinence showed the most rapid increase. The findings of this study demonstrate the importance of providing decision-makers with quantitative data which reflect trends in population needs.