A rapidly expanding aging population is creating concern among health care providers about how best to provide care that will maintain health and quality of life among this group. Of particular concern are the very frail rural elderly individuals being cared for in their homes or other community-based settings. A group of non-advanced practice registered nurses (non-APN) in rural southern and central Oregon have developed independent practices to serve elderly individuals in these settings. This focused, ethnographic study examined the perspectives of both nurses and clients about the development, implementation, and evaluation of this nursing role.
ASSESSMENT OF NEED
By 2030, the percentage of individuals 65 and older in the United States will increase from 12.4% to 20% (U.S. Department of Health & Human Services [USDHHS], 2003). The fastest growing age group is 85 and older (USDHHS, 2003). This is also the age group most likely to be female, living alone, and most at risk for health problems. According to the 1997 census estimates, 37.7% of all Americans older than 65 had a severe disability with 8% needing assistance. By 80 and older, 57.6% had a severe disability with 34.9% needing assistance (USDHHS, 2003). With an increase in the average life span, the need for supportive services to the population of frail older adults is obvious.
The Oregon population older than 65, at 12.6% in 2000, is somewhat higher than nationally (USDHHS, 2003). The location for this study was a three-county area in the southern and central regions of Oregon. Based on 2000 statistical data, one of these counties has 20.1% of the population older than 65. Another has 16%, and the third has 13.1% of their populations older than 65 (U.S. Census Bureau, 2004). Although two of the counties have metropolitan areas consisting of between 60,000 and 70,000 residents, these three counties are classified as predominately rural with many of the rural communities located in the surrounding mountains (Oregon Health & Science University, 2004). Southern Oregon is increasingly being viewed as a retirement destination. Therefore, the number of individuals older than 65 is expected to increase.
The development of home and community-based long-term care has been a result of several economic and demographic trends. These include:
* Increasing number of elderly individuals, thus a greater demand on the long-term care system.
* More acutely ill clients being discharged earlier from acute-care settings into the community settings.
* Escalating nursing home costs.
THE OREGON EXPERIENCE
Oregon has been a leader in the development of alternatives to nursing home care and was one of the first states to request waivers in Medicaid funds to pay for alternative community-based care settings. Oregon Seniors and Persons with Disabilities Services (SPDS), formerly Senior and Disabled Services Division (SDSD), is responsible for containing the costs of long-term care. The philosophy of this agency has been that Oregon's citizens want the longterm care system to embody the values of independence, dignity, privacy, and choice. The focus has been on the provision of services to the elderly individuals in community-based care settings, with nursing homes a placement of last resort (SPDS, 2005).
The Medicaid waiver made financial support available for those elderly individuals who met the criteria for nursing home placement as well as financial need, but had chosen to stay in community-based care settings. In Oregon, community-based care settings include care provided in the client s home as well as adult foster care (board and care homes), assisted living facilities, and residential care facilities. To meet the needs for care of the elderly individuals remaining in their homes, SPDS developed a program to pay caregivers of these frail, chronically ill elderly individuals. These caregivers included family members, friends, or other non-licensed caregivers employed by the elderly individuals but paid for by Medicaid.
Foster care providers were also considered as providing community-based care and were reimbursed by Medicaid for eligible clients. Adult foster care homes are licensed by SPDS to provide care for up to five residents at three possible classifications of care. The provider's previous experience providing direct care determines the level of personal care they are allowed to provide to their residents (Rogue Valley Council of Governments, 2004). Class One foster care homes may only admit residents who need assistance in up to four activities of daily living. Class Two and Three foster homes can provide care equivalent to that provided by a nursing home and at much less cost to the state. These facilities may accept either or both Medicaid eligible or private pay residents. In 1996, 70% of the residents were private pay (Dietsche, 1996).
The initial focus for the concept of community-based care was the provision of a "social model" of care as opposed to the traditional nursing home "medical model" approach. As a result, less emphasis was placed on the health care needs of this vulnerable population. With the advent of Diagnostic Related Groups in the mid-1980s, hospitalized elderly individuals were being discharged earlier, and often sicker, to the community setting. Following the passage of the Balanced Budget Act of 1997, many elderly individuals with chronic illness needs did not meet the stringent Medicare guidelines for home health nursing services (SDSD & Oregon Associates of Area Agencies on Aging, 1998).
Under the social model of care, it became obvious that the health care needs of this group of communitybased elderly individuals were not being met. To meet these needs, SPDS employed a limited number of nurses called contract registered nurses (CRNs). These nurses contracted with SPDS to monitor the ongoing health needs of the community-based elderly individuals, and to assess, teach, and monitor certain nursing tasks delegated to paid caregivers of SPDS clients in community-based care systems.
When confusion arose about the differences between home health nursing and community nursing as practiced by the SPDS CRNs, a focus group composed of representatives from the Oregon Health Division, Senior and Disabled Services, Office of Medical Assistance, and the Oregon Association for Home Care developed a typology that differentiates home health nursing and community care nursing (Oregon Department of Human Services, 1999). Community care nursing was characterized as:
* Not requiring a physician order.
* Focusing on monitoring activities.
* Being suitable for stable and predictable client conditions.
* Providing for long-term maintenance and chronic care.
* Functioning as a substitute for custodial care.
Moneyham and Scott (1997) described a "nurse care management" model with the following interventions common across settings (p. 70):
* Comprehensive assessment.
* Care planning.
* Information and referral.
* Direct nursing care services.
* Coordination and monitoring of services.
They preferred the term "care management" versus "case management" because "care management is a much broader model that focuses on both quality of care and cost containment issues simultaneously over an extended period of time" as opposed to case management which is usually "concerned with cost containment during a particular episode of care" (p. 70).
The model of care practiced by the CRNs employed by SPDS and the independent nurses in this study was based on the focus group model previously identified. This study was designed to identify the activities (interventions) used in actual practice.
OUTCOMES OF COMMUNITYBASED NURSING CARE TO FRAIL ELDERLY INDIVIDUALS
A growingbody of research indicates that nurses are critical to maintaining the health of elderly individuals who are chronically ìli and reducing health care costs associated with repeated hospitalizations. Research on the cost-effectiveness of home and community-based care has had mixed results. However, studies examining the spécifie contributions of nursing demonstrate economìe benefits as well as positive client outcomes. The National Long-Term Care Demonstration "channeling" project conducted in 10 sites between 1981 and 1985 substituted community care for nursing home care (Kemper, 1988).
While preliminary analysis of this project reported no cost savings, a reevaluation of the data using newer methods of analysis by Greene, Ondrich, and Laditka (1998) found a 10% potential reduction in overall long-term care costs for the frail elderly population in contrast to the 12% net cost increase originally found for the overall project. The two factors accounting for this difference were better targeting of services to those at higher risk and altering the mix of services offered from more personal care services to a more "medicalized" mix of services focused on home nursing. The investigators concluded (Greene et al., 1998):
It appears that a more stringently targeted and more medically oriented model of intervention would have better served the goals of reducing nursing home use and long-term care costs, (p. S237)
In Arizona, Carondelet St. Mary's Hospital was one of the first programs to use both advanced practice nurses (APN) and non-APN nurses as primary community-based care providers to elderly individuals in Tucson and to document cost savings and improved access to care as a result of nursing case management (Etheridge, 1991; Etheridge & Lamb, 1989). More recent studies have focused primarily on the outcomes of APNs as care coordinators for high-risk communitybased elderly individuals. Results have found a decreased cost of care, reduced hospital admissions or readmissions, reduced length of stay, and reduced emergency room and physician office visits (Naylor et al., 1999; Quinn, Prybylo, & Pannone, 1999; Waszynski, Murakami, & Lewis, 2000).
No research was located focusing specifically on the practice of independent non-APN community care gerontological nurses practicing in rural settings. This study examines the nursing role of non-APN independent entrepreneurial nurses serving private-pay elderly individuals in predominately rural settings of southern and central Oregon.
The methodology used for this study was focused ethnography (Muecke, 1992). The aims of this study were to:
* Describe the practices of independent community care gerontological non-APNs from their own perspectives related to the population being served, residential settings in which services are offered, medical problems of the clients, expressed needs of the clients, services offered, and in what ways nurses perceive their services to be effective.
* Identify from the client's perspectives the need for nursing services that led to the request for assistance, services provided by the nurse, and how the clients evaluate those services.
* Describe the inter-relationships and communication processes of these nurses with other health care providers including physicians, home health agencies, acute care services, nursing homes, SPDS, and other communitybased providers.
Following Institutional Review Board approval, interviews were conducted with seven nurses who were providing care on a private- pay basis to the elderly populatioa These interviews each lasted approximately 90 minutes and were audiotaped. The nurses were then observed during home visits with their clients (with the client's permission). Audiotaped interviews (approximately 20 to 30 minutes in length) were performed at another time with six clients. Interview data were transcribed and entered into the Ethnograph™ software program (Scolari, Denver, CO) for content analysis. The data were collected in the fall and winter of 2001. Preliminary analysis of the nurses' data was shared with the nurses, and follow-up interviews were conducted with six of the nurses to verify, clarify, or elaborate on the findings. Observations of the visits were recorded in the researcher's fieldnotes.
Who Are The Nurses?
Only seven nurses were located in southern and central Oregon who met the criteria of providing privatepay, community-based nursing care to elderly individuals. All of these nurses were older than 40, and six had at least 10 years of experience in nursing prior to developing their independent practice. One nurse who had received her education and license more recently had 5 years of nursing experience, but had previously worked as a long-term care surveyor for SPDS. All seven had baccalaureate degrees; six were in nursing. The more recently licensed nurse was an ADN with a baccalaureate degree in another field. Six of the seven had home health experience; three had also worked in critical care. Three had been LPNs and four had pursued the BSN after the ADN. Two had basic preparation at the BSN level. Five had worked or were still working as CRNs with the SPDS to provide nursing services to Medicaid clients in the community. Two nurses were in the process of retiring from their independent businesses during this study period to pursue other interests in nursing, such as returning to school or setting up a private non-profit information and referral service. These were a group of highly motivated, experienced, and career-oriented nurses.
When asked about their motivation for developing an independent practice, the major response was the independence and autonomy to practice nursing as they felt it should be practiced and their enthusiasm for working with the elderly population. They saw the need for this service as very important because of the increasing population of frail elderly individuals who need assistance to remain in their own homes or in community-based settings.
The lack of services available to those elderly individuals who don't meet the requirements for Medicaid was also cited as a contributing factor. Eligibility for home health care is based on the need for skilled care, but many of these elderly individuals have chronic care needs and they "fall through the cracks." In addition, lack of family support, an aging caregiver, or lack of adequate discharge planning post acute care can leave an elderly individual vulnerable to poor health outcomes.
Who Are The Clients?
In this study, clients were defined as either the elderly individuals or their care providers. The major contractors for five of the seven nurses were foster care providers. Two of the nurses worked primarily with elderly individuals living in their own homes who were usually referred by a physician or family member. One of these nurses also served as a health care guardian for at-risk elderly individuals referred by the courts.
Most residents of foster care homes are older than 80 and unable to live independently. Many have family who either live out of the area or are unable to care for them because of other responsibilities. Health problems are primarily chronic conditions affecting functional activities of daily living including Parkinson's disease, stroke, hypertension, heart disease, dementia, depression, diabetes, respiratory problems, arthritis, and vision and hearing loss. These residents need 24-hour supportive care, medication administration, monitoring of health status, and companionship.
Foster care providers have begun seeking out the services of nurses primarily because of state licensure requirements for adequate documentation of care plans, psychotropic drug use, restraint use, as-needed medication parameters, and delegation of nursing tasks. Members of a local foster care provider's organization were concerned about the often-negative image of foster homes resulting from a few well-publicized cases. Several members were contracting privately with a nurse through a local hospital to see their private pay residents to increase the quality of their care and, ultimately, their reputations. This nurse had a caseload of 10 foster care providers. Thirty-seven providers had requested her services, but she was unable to take on any more clients and stated that there were no nurses available to whom she could refer these clients.
Four CRNs with SPDS had been asked by foster care providers to see their non-Medicaid, private-pay residents along with the Medicaid eligible residents. At the time of the study, most of these nurses had a client caseload of zero to four foster homes with up to 10 private pay residents for whom they were supervising care. These requests had been a relatively recent occurrence (within the past 1 to 3 years). The foster care provider paid for these services because they were considered part of the services offered by the foster care home to its clients.
Clients seen in their own homes often were referred by family members who lived out of the area and wanted an "extra pair of eyes" to oversee their elderly loved ones' care. Physicians concerned about the elderly individuals' ability to be compliant with their medical regimen referred a couple clients. According to the nurse, these clients needed case management and an advocate for their health needs. This nurse was taking over the business and caseload of one of the retiring nurses. She had 14 private cases and said her maximum caseload was 15 clients because she was working part-time for a local hospital as well as for SPDS as a CRN. The retiring nurse was developing a non-profit information and referral service and performing assessments for long-term care insurance companies.
Clients referred by the courts for health care guardianships are a special challenge because the situation often involves neglect or abuse toward elderly individuals and the nurse needs to be able to negotiate a difficult situation. One of the nurses had two cases within the previous year. She combined this with other independent work including private in-home clients, consultation to foster care providers, and working with SPDS as a CRN. She retired from her private business and returned to school.
The activities described by the nurses as a part of their nursing role are summarized in this section and in the Sidebar.
Assessment. Assessment is the first phase of the nursing process. Some nurses described their assessments as "holistic." New client assessments were much more extensive than follow-up assessments and included physical and mental status, health history, medication check, nutritional status, behaviors, socialization needs, financial status (to determine eligibility for other services), and other agencies involved with the client. Nurses assess the caregivers both in the foster care and private homes to determine if their care is appropriate and skill level is adequate and safe. Nurses also assess the caregivers emotional and physical health. Environmental hazards and equipment are also assessed.
Documentation. Documentation is evaluated if the client is a foster care provider. The state requires an individualized care plan be updated every 6 months. In addition, documentation must include parameters for as-needed pain medications, restraint and psychotropic medication evaluation, and decubitus ulcer documentation. The nurses document care on the forms provided by the state for the foster care homes. In addition, the nurses maintain their own documentation of care.
Teaching. Teaching is a major activity of the nurse. The nurses said the goal of their teaching is for clients to have the knowledge and skills to make appropriate health care decisions independently as needed. Much of the teaching is anticipatory guidance, so clients may plan ahead for what to do in a variety of situations, including reactions to medications, potential changes in a client's condition, and when one should call a physician or emergency services (911). Nurses described their teaching as successful when clients made the correct decisions based on nurses' teaching.
Delegation and Assignment. Delegation and assignment are also part of the teaching role. The Oregon Nurse Practice Act allows registered nurses to delegate nursing tasks to unlicensed, community-based care providers including foster care providers and client-employed care providers (Oregon State Board of Nursing, 1999a, 1999b). Any nonfamily, unlicensed caregìver performing nursing tasks without appropriate delegation by a registered nurse can be prosecuted for practicing nursing without a license.
According to Oregon State Board of Nursing rules (1999a, 1999b), delegation is defined as meaning:
a registered nurse authorizes an unlicensed individual to perform special tasks of client/nursing care in selected situations and indicates that authorization in writing. The delegation process includes nursing assessment of a client in a specific situation, evaluation of the ability of the unlicensed individual, teaching the task, and ensuring supervision.
Assignment refers to the assignment of "basic tasks" to an unlicensed individual and also includes documentation and evaluation.
Delegation was a process of most concern to the nurses. Concerns included:
* Quality of caregivers.
* Amount of documentation.
* Lack of clarity of the law, and the punitiveness of the law when the process is not followed.
* Lack of transfer or rescinding of delegation when home health is involved.
In addition, care providers do not understand the limitations of the law (e.g., delegation is only for one skill involving one client). Some caregivers are performing nursing skills without the benefit of appropriate delegation, and they risk prosecution by the State Board of Nursing.
Monitoring. Nurses described this activity as the monitoring of basic physical care including skin care and cleanliness, medications (e.g., psychotropics, as-needed pain medications), behavioral management of dementia, and the chronic disease process itself.
Advocacy, Advocacy was a frequently mentioned role, especially with physicians on behalf of clients. Networking was also an important part of the nurses' role and included networking with other care providers, including home health, hospice, podiatrists, physical, occupational and speech therapists, attorneys, and mental health providers.
Support, Support was especially important to the foster care providers. Because the nurses are often involved with their clients for a number of years, they develop a very close professional and personal relationship, which they described as having "a level of trust that just happens."
Interviews were conducted with five foster care providers and one private client. Most of the private clients seen were considered not suitable to be interviewed because of dementia. Much of the following reflects the perspectives of the foster care providers.
Services Valued. Foster care providers valued the ability to participate in a problem-solving process in relation to care. They valued the nurses' suggestions of ways to handle behavior changes; how to evaluate medication effectiveness, medication interactions, or the need for a change in medication; decubitus ulcer care; or whether a client needed to see a physician or go to the emergency department.
Equally valued was the ability of the nurses to advocate on their behalf with physicians and other care providers. Foster care providers expressed a great deal of frustration with their own inability to contact to the physicians to get orders and were grateful for the nurses' skills in this process.
Another value to the foster care providers was the assistance of the nurses in helping them meet state Iicensure requirements. State inspectors were often impressed with the completeness of the documentation when a nurse was involved, and this made the inspection process much less stressful to the foster care provider.
Benefits. Foster care providers expressed that they had "peace of mind" about their decisions and felt assured in knowing that they were doing the best thing for the residents with the support of the nurse. They described both residents and residents' families as feeling more secure knowing a nurse was available to them. They believed this was "good for their business." The nurses develop close relationships with the families and are supportive to them as the resident's health deteriorates.
The continuity of care is an important benefit. The foster care providers contrasted their CRN with the home health nurse "who can only look at their assigned person and can only provide skilled care." The CRN knows all the clients, what they are like, and can often provide consultation over the phone. This continuity is also costeffective because, as one foster care provider stated, "It is less expensive to call a nurse than to call an ambulance or run them to the doctor unnecessarily." In addition, this provider stated, "Having the nurse come to delegate a skilled nursing procedure, it pays for that. It is worth the money to know that she's there if I need her."
All clients expressed their appreciation for the personal relationships they had with the nurses. Clients made the following comments to support this:
* " I feel comfortable with the nurse and can talk with her about anything."
* "She is a support, a resource, and a friend."
* "She talks to me about ways to make sure I don't burn out. Like when a resident passes away."
* "She's here to say, let me give you a hug because, you know, it looks like you're having a bad day. It's really more than I had expected."
Nurse's Criteria for Evaluation of Success
When nurses were asked how they knew when they had been effective, responses included:
* When they are thanked when things go as planned.
* When clients refer other clients to them.
* When clients have fewer hospitalizations.
* When the goals mutually set by the nurses and clients are achieved.
* When clients do not call for advice inappropriately.
This small study focused on nurses in predominately rural southern and central Oregon who were implementing independent practices working with elderly individuals in community-based care settings. This is a fairly new role emerging in this region, but the need for it is clear. The state of Oregon has provided nursing services for elderly individuals eligible for Medicaid benefits. However, elderly individuals who do not qualify for Medicaid often fall between the cracks in accessing care. The costs of inadequate community-based care can be reflected in increased physician office visits and emergency department visits, quantity and length of hospitalizations, and admission into nursing homes.
The nurses are role models for providing community-based nursing care to chronically ìli elderly individuals. They are working at the request of their clients, not based on a physician order. Nurses maintain longterm relationships, enabling them to know their clients as individuals and to become familiar with their chronic health conditions. They can act as mentors and advocates for the elderly individuals and their caregivers.
The activities identified by these nurses are very similar to the "interventions" identified by Moneyham and Scott (1997) as nursing care management. The special nursing knowledge that nurses bring to this role related to pathophysiology, medication management, nursing tasks, and personal care are at the core of the unique care management services offered by these nurses. It is this special knowledge which most directly affect the health status of the elderly individuals nurses serve. Additionally, the knowledge these nurses had of the resources available in their communities enabled them to provide care management services through their advocacy and networking skills.
Although this study examines the actual practice of entrepreneurial, independent, community-based nurses practicing in predominately rural settings, further research needs to be conducted to examine the outcomes of community-based nursing practice with chronically ill elderly individuals by non-APNs to gain both professional and financial recognition for the role. Further development of this nursing role has the potential for enhancing the health care and quality of life for elderly individuals who wish to remain in community-based settings.
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