Courage is nine-tenths context. What is courageous in one setting can be foolhardy in another and even cowardly in a third.
♦ Access to services is a challenge in rural and inner-city communities.
♦ Continuity of care is difficult when patients are discharged to rural and inner-city communities where palliative care is not available.
♦ Community collaboration is necessary to improve palliative care in rural and inner-city communities.
♦ The financial viability of small hospices is threatened because they do not benefit from economies of scale and serve populations with low levels of health insurance coverage.
♦ Providing palliative care in inner-city and rural communities is challenging
♦ Access to medications to manage pain is problematic in some rural and inner-city communities.
♦ Palliative care for diverse and underserved populations in rural and inner-city communities requires sensitivity to health, cultural, and spiritual beliefs.
Every chapter in this textbook contains information on palliative care that applies to patients and their families who live in inner-city or rural areas. The same principles apply and the same approaches are recommended for palliative social work wherever individuals and families are coping with serious and life-threatening illnesses. Why then were we asked to write about special considerations for palliative social work in inner-city and rural areas? The answer is that context matters. To use the approaches recommended in this textbook, and to ensure quality care in rural and inner-city areas, social workers must manage unique challenges related to delivering and integrating services into these unique communities. The capacity to take advantage of opportunities afforded by a particular local context requires insight, knowledge, and of course, courage. To be effective, social workers serving these areas must be innovative and develop partnerships with leaders and organizations in the local community. Effective programs serving inner-city and rural areas use creative strategies to deliver effective palliative care. Social workers are especially valuable in these programs because they have skills in community assessment, engaging stakeholders, and problem solving at individual, family, programmatic, community, interorganizational, and social policy levels.
It is a paradox that even though rural areas appear to be so different from urban areas, they have much in common. This paradox invites confusion when comparing the needs of rural and inner-city palliative care services and health services in general. The assumption that urban areas constitute a single type of community is very misleading because it does not distinguish the unique aspects of the inner city within metropolitan areas and separate them from suburbia. For example, on average, poverty rates are higher in rural than metropolitan areas; however, it would be quite misleading to say that poverty does not exist in urban communities. Poverty rates in urban areas within metropolitan areas are very high; between 2007 and 2008 urban poverty rose from 16.5% to 17.7%; suburban poverty also rose but only from 9.0% to 9.8% (Acs, 2009). It is important to carefully identify the geographical location and the characteristics of inner-city neighborhoods in order to understand their needs and challenges.
Many data are available for urban and metropolitan areas that describe the populations in general, often including the urbanized suburban communities associated with these cities. However, there is much less data available about inner cities within cities and metropolitan areas. It is generally agreed that inner cities are characterized by high proportions of low-income individuals and families and often by a high proportion of African American and other racial and ethnic minority groups. Latinos are highly represented in some of these communities. However, although a great deal has been written about inner cities, it is not easy to identify these areas precisely and obtain data describing them. Some research has attempted to do so by identifying census tracts or block groups with high proportions of residents living under the poverty line, high rates of unemployment, or high proportions of families with incomes below the median income level of the surrounding metropolitan area (Rankin & Quane, 2000). In certain metropolitan areas, inner-city neighborhoods have been defined (Committee on National Urban Policy, National Research Council, 1990). The Urban Institute, the Initiative for a Competitive Inner City, and other organizations have been active in promoting research on inner cities and have developed various ways to gather data. However, the lack of widely used standard definitions and methods to identify inner-city neighborhoods has limited the research on their characteristics and the challenges they face.
In contrast, rural areas have been the focus of a great deal of research and a variety of measures are used to locate geographical areas on the rural-to-urban continuum. The Economic Research Service of the U.S. Department of Agriculture has taken the lead in this work and provides guidance for researchers in defining rural areas and urban influence at the county and census tract level (Economic Research Service, 2008, 2000). There is a long tradition of research comparing rural and urban areas on a wide range of factors (Economic Research Service, 2009), including health status, insurance coverage, health care professional shortages, and poverty. As a result, there is a literature on rural services and rural health that can be very helpful in planning rural palliative care services. For example, lower levels of health care coverage (Bolin & Gamm, 2003) and higher rates of chronic illness (Dennis & Pallota, 2001) have been documented. There are also organizations that are active in formulating policies based on the data, such as the National Rural Health Association and the Office of Rural Health Policy. As a result, there is much more documentation of rural needs than inner-city needs. In this chapter, we note similarities between rural and inner-city environments and draw conclusions about approaches that may be successful in both locations, but we cannot draw on a comparable level of research publications concerning the inner city to support all our claims.
None of these generalizations is true of every rural or every inner-city area. In fact, it is especially important for palliative social workers to learn about the particular community and its residents, history, characteristics, and needs. Beginning with a community assessment is an important step in delivering effective palliative care in rural and inner-city areas. The social worker is uniquely qualified to initiate a community assessment and to engage the community in developing plans for effective services that will meet their needs and build on their strengths.
Innovative Approaches to Service Delivery
In this section, we will review particular challenges to delivering palliative care in inner-city and rural areas and suggest innovative approaches for effective service delivery. Some of the suggestions are based on approaches that have been used and documented; other suggestions seem promising and could be tested to determine their effectiveness.
Improving Transportation and Access
The most important barriers to palliative care in rural regions and inner cities are related to access. Barriers to access in rural communities have been documented (Van Vorst et al., 2006). Many rural areas are identified as “health professional shortage areas”; 68% of these shortage areas are located in rural regions (Health Resources and Services Administration [HRSA], 2009). Although inner cities may constitute many of the remaining shortage areas, the numbers are not reported for inner cities. We state this to support the general impression that there is much more documentation of rural needs than inner-city needs. In rural areas, the shortages of health care professionals are directly related to the low density of the population. The number of patients is too small to support full-service hospitals and clinics and even to sustain a primary care practice. Fewer rural and inner-city residents receive palliative care and fewer die receiving hospice care. Data on poor access to hospice in rural areas are well documented (Madigan, Wiencek, & Vander Schrier, 2009; Virnig, Ma, Hartman, Moscovice, & Carlin, 2006; Virnig, Moscovice, Durham, & Casey, 2004).
Rural residents tend to prefer local care rather than traveling long distances for care, and many rural residents cannot access services in metropolitan areas. As a result, individuals rely heavily on care by generalists, internists, and those in family practice who focus on acute and routine care. Seeking local services may still require that patients travel long distances (Jones, Parker, Ahearn, Mishra, & Variyam, 2009). For example, there may be a clinic in their county, but it may be located more than a 30-minute drive from their home (Chan, Hart, & Goodman, 2006). Patients who are suffering from chronic diseases may find it uncomfortable to travel for routine primary care, and their conditions may worsen without monitoring and attention. They may seek local care only when there is an emergency.
Rural areas rarely have professional providers trained in specialties such as palliative care (Kelley, 2007). Patients with severe chronic and life-threatening diseases are frequently transferred to regional health care centers for specialized care, often far away from their homes. Hospital-based palliative care may be available only at the regional health care centers where it is a specialty, whether as a separate hospital unit or as a hospital-wide consultation service. Therefore, rural patients are unlikely to benefit from palliative care until they are referred to a regional health center, and follow-up care with their primary care physician in their communities may not be adequate. Chan, Hart, and Goodman (2006) report that a quarter of those patients living in small and isolated rural areas who were seen for cancer (malignant neoplasm) had traveled nearly 1 hour one way to receive treatment, which was a great burden for these patients who were very sick. Rural patients must pay costs for travel (both financial and time costs) that urban residents do not have to pay (Jones et al., 2009). Because of shortages of palliative and hospice social workers serving rural and inner-city areas, new strategies are needed to attract students to practice in these settings, including grant and loan-forgiveness programs for bachelor's and master's education in social work (Hospice Association of America, 2005.
Home hospice might seem like the ideal alternative during the last 6 months of life so that rural patients can receive palliative care in their own homes. It is covered under the Medicare Hospice Benefit and many low-income rural elders are covered for this kind of palliative care. However, fewer patients receive hospice care in rural areas than in urban areas, and in many rural states, a large proportion of deaths occur in regions not served by a hospice (Virnig et al., 2006).
Other types of barriers to accessing palliative and hospice care exist in the inner city. Many patients and family members may not own a car, and as a result encounter barriers to traveling even moderate distances to the hospital or clinic. For instance, patients may endure cramped buses or subways with standing room only, and multiple bus or subway transfers can result in long, exhausting travel trajectories inappropriate for seriously ill patients. Staff travel to visit families at home involves transportation and safety problems that will be discussed later.
One strategy for improving access to services for patients and families is telemedicine. Generally, telemedicine is used to supplement traditional face-to-face services rather than to replace them. Telephone contacts are frequently used to monitor and reassure patients and also to guide and support families struggling with the constant changes and the anxiety of caring for a palliative care patient. Videophone and computer-assisted communication can be used to enhance communication with families who live far from the hospital or the hospice office and when it is difficult for a nurse or social worker to travel to the home. There has been little research on the effectiveness of telemedicine. Some studies suggest that it is accepted by patients and families and could be helpful in improving quality of life (Bakitas et al., 2009; Demiris, Doorenbos, & Towle, 2009; Madigan et al., 2009). When there is resistance to using the new technologies, it may be more on the part of the service providers than the patients and families.
Obstacles to the use of telemedicine include limited equipment availability and the absence of telephone service in the home, which is sometimes limited in both rural and urban communities. Hearing impairment on the part of the patient or caregiver can be another hindrance (Whitten, Doolittle, & Mackert, 2004). An additional impediment is the reality that there is currently no reimbursement for home health or hospice service by telemedicine (Madigan et al., 2009). In addition, access to the Internet and high-speed Internet service providers is still limited in many rural regions (Carlton-LaNey, Murty, & Morris, 2005).
Although telemedicine has been recommended primarily to improve access to services in rural areas, its potential value in programs serving inner cities needs to be evaluated. Telemedicine precludes the travel and parking difficulties and provider safety concerns that may discourage routine home visits. A Hastings Center Report recommends research on improving access to hospice with
.telehospice demonstration projects, in which centrally located palliative care specialists may interact at a moment's notice both with family caregivers in private residences in a stratified selection of geographic settings, to include, urban, suburban, inner city, rural and wilderness areas, and with staff in nonhospice inpatient settings such as hospitals, nursing homes and assisted living facilities
(Jennings, Ryndes, D'Onofrio, & Baily, 2003, p. 55)
Thus, telemedicine has the potential to be highly cost-effective as an innovation in the delivery of palliative and hospice care within rural and inner-city settings.
Improving Financial Viability of Palliative Care and Hospice Programs
Health care programs in both inner-city and rural areas face extreme financial burdens that put their viability at risk. Due to the concentration of poverty and the low levels of insurance coverage of the residents, providers that primarily serve these patients are likely to become impoverished themselves due to low levels of reimbursement for services provided. This phenomenon was documented in rural areas by Virnig et al. (2004):
In many rural areas, the number of patients is too small to support full-service hospitals and clinics and even to sustain a primary care practice. The unique challenges of delivering health services in rural areas have generally not been given sufficient attention
(Jones et al., 2009, p. 45).
Since many low-income patients may be eligible for Medicaid, policies to encourage Medicaid coverage for home health, hospice, and palliative care are recommended by the Hospice Foundation of America (2005).
One of the reasons that many rural regions are not served is that small hospices serve fewer patients and as a result they run into serious financial difficulties and many are unable to survive. Patients with high-cost needs in low-volume hospices can have a devastating effect; one patient who requires a high intensity of service or unusually expensive medications can bring about financial ruin in a system that is reimbursed at a daily rate. As a result, many small hospices are barely surviving financially. Casey et al. (2005) report that Medicare and insurance reimbursements were not sufficient to cover costs of the small rural hospices they studied. Some programs widen their patient base by combining home health and hospice programs in one organization; however, the financial risks remain high (Peterschmidt, 2006).
Some inner-city programs also encounter financial problems as a result of serving low-income, underinsured community populations; small size may contribute to problems of hospices in urban areas as well. Many inner-city patients and families do not seek hospice care because they do not see its value but rather view hospice care as second-rate or experimental care (Neubauer & Hamilton, 1990). The lack of a reliable family caregiver at home may characterize a greater proportion of inner-city patients, and this alone might exclude their acceptance by many hospice programs. Persons who live alone, are homeless, or live in environments with high drug addiction and drug dealing activity are generally excluded from hospice services (Colón & Lyke, 2003; Crawley et al., 2000; Rhymes, 1996). As a result, hospices in both geographic areas have the potential to experience financial difficulties, which can threaten their survival.
In addition to the risk that goes along with small size and low patient volume, rural hospices are under financial strain because they serve patients who are dispersed over a large geographic area. Providing staff and on-call coverage for a fluctuating census is challenging. The burden of travel costs and time is heavy. Distances between patients' homes and from the hospice home base make it difficult to respond quickly with a visit and create a burden on staff. Hospices serving inner cities may also encounter difficulties traveling to serve neighborhoods.
It is striking that instead of being compensated for their higher service delivery costs, rural hospices actually receive lower Medicare payments because the rates are based on lower wage rates in rural areas (Casey, Moscovice, Virnig, & Durham, 2005). The U.S. General Accounting Office (GAO) (2005) identified this problem and suggested that it might be appropriate to change these rules concerning payments to rural hospices. Financially strapped inner-city programs that serve primarily underinsured populations are also less able to afford sufficient qualified staff to deliver services. “Although costs for pharmaceutical and pharmacotherapy for symptom control and pain management have increased dramatically, the reimbursement system has not changed since its inception” (Hospice Foundation of America, 2008, p. 6). The Hospice Foundation of America (2008) recommends that the Centers for Medicare and Medicaid Services (CMS) should evaluate revision of the Medicare Hospice Benefit reimbursement system to make sure that it is adequate.
Availability of Medication for Pain Management
Adequate pain management is central to effective palliative care. The Hospice Foundation of America (2008) states that:
Inadequate pain management has been identified by experts in the field as a national public health issue. Terminally ill patients may require very high doses of pain medication to achieve effective pain control. Physicians and other health professionals often do not have adequate knowledge about pain control, and/or have fears of laws related to controlled substances. (p. 8)
The Hospice Foundation of America (2008) stresses that laws should be avoided that discourage or prohibit physicians from prescribing the controlled substances needed to manage pain across all stages of illness, and not just at the end of life.
Securing the medications to manage pain can be a challenge in rural regions (Dunham, Bolden, & Kvale, 2003) and in inner-city areas served by small or nonchain pharmacies with limited medication inventories or by pharmacies that do not stock opioids which are considered targets for theft (Morrison, Wallenstein, Natale, Senzel, & Huang, 2000). Health care providers serving these areas often find it especially difficult to obtain medications, often have to pay higher costs, and may struggle to ensure safe delivery of the medications palliative care patients need. Small hospices have difficulty obtaining medications at the lower bulk rates that higher volume hospices can obtain. These higher costs have been documented in small rural hospices (Virnig et al., 2004) but are likely to be an issue as well for small inner-city hospices. Forming a consortium of health institutions (including free-standing hospices, hospitals, and nursing homes) within an urban or rural area, or across an urban-suburban-rural region, may help them to negotiate collectively in purchasing medications at less expensive bulk rates (see Table 13.1).
Table 13.1. Forming Consortia of Rural and Inner-City Health Providers to Negotiate Cost Savings from Bulk Medication Mail-Order Companies
A hidden, major cost to families and society may be the extent to which higher rates of hospitalization at the end of life stem from the lack of appropriate access to opioid medications (Cherny, Frager, & Ingham, 1995). Restrictions on physicians in prescribing medication, and on pharmacists in stocking them (Green, Ndao-Brumblay, West, & Washington, 2005; Morrison et al., 2000), exist where there are serious concerns over illegal drug trafficking and drug-related crime. Rural areas, as well as inner-city areas, have been experiencing growing problems with abuse and diversion of prescription medications. Some medications needed for treatment of symptoms may not be stocked by small pharmacies, and many rural areas do not have 24-hour pharmacy coverage (Dunham et al., 2003).
Because nursing homes operate much of the time without doctors or pharmacies on their premises, pain medications are delayed due to the mandate by the U.S. Drug Enforcement Agency (DEA) that pain medications be prescribed only after written signatures from physicians are faxed to off-site pharmacies (Johnson, 2009). Pain medication delays are especially lengthy for residents with pain exacerbation in the middle of the night or who are in transition from the hospital. These mandates are designed to lower the potential for drug theft and abuse by nursing home staff. New tamper- or abuse-resistant or deterrent formulations of opioids are designed to prevent prescription drug abuse (King, 2009). In some common or repetitive circumstances, nursing homes could satisfy the intended purpose of the DEA mandate to prevent drug theft and abuse while avoiding delays in the administration of pain medications and needless patient suffering. In particular, limited supplies of tamper-/abuse-resistant or deterrent formulations of opioids, such as methadone/naloxine, could be stocked and closely monitored at the nursing home for circumstances when efforts to meet the DEA mandate are likely to result in prolonged episodes of untreated pain. Social workers and other health professionals should advocate in these circumstances for exceptions to the DEA mandate that pain medications be prescribed only after written signatures from physicians have been obtained and faxed to off-site pharmacies.
Patients with a history of addiction may experience lower tolerance for pain when measured experimentally (Compton, Charuvastra, & Ling, 2001), which may be related to the observation that the pain behaviors demonstrated by those with a history of addiction are sometimes assessed as out of proportion to injury. When this occurs, regardless of the factors responsible, it may predispose health providers to dismiss the pain and assume that the patient is drug seeking (Gureje, Simo, & Von Korff, 2001; Scimeca, Savage, Portenoy, & Lowinson, 2000). At the same time, patients addicted to drugs may manipulate their pain medications and secure nonprescribed, diverted medications to fuel their addiction (King, 2009). Another risk is that family members or neighbors and acquaintances will steal, divert, or use the prescribed drugs, creating an unsafe environment for all.
Physicians monitor their prescribing practices in an effort to create a safe, effective treatment plan and/or in response to regulatory scrutiny. This may include state medical boards, and state and federal regulatory bodies such as the U.S. Drug Enforcement Agency (DEA), which is charged with investigating and prosecuting violation of the 1970 Controlled Substances Act (CSA). The CSA mandates that controlled substances be prescribed “for legitimate medical purpose by a practitioner acting in the usual course of his professional practice.” (Joranson & Gilson, 2004; Tierney, 2007). At the same time, there is an ethical mandate to treat pain and suffering in patients, and the shared palliative care goal is to create a treatment plan that enhances the safety of patients, families, and prescribers. When these issues impact care, a structured plan of care can be created that includes frequent office visits or home visits, use of nonopioid medications, and inpatient admissions or residential care in the extreme circumstances where patient's symptoms cannot be managed in the home. Providing a lock box in the home is one suggestion for keeping all medications safely stored. Drug trafficking and abuse are serious problems in inner-city neighborhoods and growing problems in rural areas.
Home Visits: Challenges and Opportunities
Because of the impact of context on providing quality palliative care in rural and inner-city areas, home visits are strongly recommended. Social workers are skilled at assessments that will provide insight into the household situation, family dynamics, and the neighborhood and community context. Home visits provide excellent opportunities for palliative social workers to assess home conditions and to forge trusting bonds with the patient and family by engaging initially in task-oriented functions (Naleppa & Hash, 2001). Common task-oriented functions that are often highly valued by chronically ill patients and their families involve arrangements with formal home care services, housing, transportation, drug and alcohol counseling, financial and income support, service coordination among various providers, and illness education. Social workers in hospital, home, and community settings who understand the concept of family as the unit of care can advocate, in clinically appropriate situations, for the training of family caregivers to self-monitor their blood pressure using an analog blood pressure monitoring device, as one means of detecting whether strain may be reaching levels that threaten the caregiver's own health (Francoeur, 2010). Valued concrete services improve continuity of care and patient satisfaction (Pawling-Kaplan & O'Connor, 1989). Because family members may be present who might never be seen at a hospital or clinic visit, it is possible to convey respect for each of them and encourage their involvement in family problem solving. Once these relationships have been established, other aspects of palliative social work (such as symptom assessment, work with grief, exploration of spiritual issues, support for caregivers, and resolution of family conflict) can be addressed in a deeper and more meaningful way.
Home hospice care offers the best opportunity for home assessment and intervention because it provides the social worker on the team ongoing opportunities to meet with the patient and family in the home environment. Unfortunately, not all palliative care patients are eligible for home hospice care. We recommend when possible that hospital palliative programs consider building in the potential for social workers to make home visits to gain a better understanding of the home and neighborhood context. When a patient is to be discharged from the hospital to home health care rather than hospice, continuity and transitions might be greatly enhanced if a palliative social worker and home health social worker can complete at least one joint home visit for assessment and consultation with the home health clinicians who will be entering the life of the patient and family. Hanley (2004) states that one-time consultations by hospice advance-practice nurses or physicians can be reimbursed through Medicare part B without an increment in cost to the home health care organization; it is not clear whether these consultations would include a palliative social worker. We advocate for systems to build support for home visits by palliative social workers for patients in inner-city and rural communities where a wide range of barriers to quality care are greatest. These visits will help to make the transition successful from inpatient to community providers.
Home visits, although they contribute to the quality of palliative care, are time consuming and involve some risks to palliative and hospice social workers. In rural areas the distances that must be travelled to visit families and the road and weather conditions are important considerations (Dunham et al., 2003). In inner-city areas, the time required for public transportation and lack of parking create special difficulties. Safety issues arise in home visits and high-crime neighborhoods that are not encountered in the hospital, clinic, or office (Naleppa & Hash, 2001). Social workers concerned about their safety in the home or neighborhood need to consult with their agency to create a plan to enhance their safety and ability to provide services. Some agencies have staff visiting in pairs or with escorts such as a trained volunteer (Pawling-Kaplan & O'Connor, 1989) or police officer. Social workers in hospices and palliative care programs can contribute to agency efforts to develop strategies that reduce barriers and increase safety when clinicians visit patients and families at home.
There are unique considerations related to home visits in both inner-city and rural areas. In rural areas, the most obvious concern relates to confidentiality. When a health care professional visits a home in a rural area, there is no way to keep the visit confidential from the community (Naleppa & Hash, 2001). Even if an agency vehicle is not used, the presence of an unknown vehicle at the home will be noted by neighbors and will raise questions. In most cases where palliative care is needed, the situation of the patient and family will already be known by the neighbors. Nevertheless, it is a good practice to discuss the situation with the family prior to the first visit and determine whether they have any concerns related to privacy or confidentiality. The distrust of outsiders is often pronounced and may make home visits a challenge in some inner-city and rural communities. Like other rural social workers, hospice and palliative social workers must be highly skilled in managing boundaries involved with home visits (Naleppa & Hash, 2001; Reamer, 2001). In inner-city neighborhoods where people are well acquainted with each other, similar issues related to confidentiality can arise and should be handled sensitively and openly discussed with patients and families.
Home visits can also be important because of the potential for abuse and diversion of drugs used for pain management. Access to these medications in the home is essential for good palliative care. Social workers need to balance an open and engaging disposition with good listening skills, and with vigilance and skilled assessment related to worries about abuse, addiction, or diversion. Families and patients may fear controlled substances or worry that any use equates with addiction. In families where individuals may be abusing or diverting prescribed medications, mutual dependency and protectiveness may draw family members to cover up evidence of these behaviors. Home visits provide social workers with a unique venue to detect whether families may be caught up in these protective strategies without assuming that they indicate bad intentions. There are opportunities for education, assessment, and the reframing of addiction as a disease needing expert evaluation and treatment. Social workers in consultation with their interdisciplinary teams develop expertise to assess and manage symptoms and create a treatment plan that structures care to enhance pain management, treatment of any addiction or substance abuse issues, and safety for patients, families, and prescribers.
In sections of inner cities, there are dwellings and specific neighborhoods that harbor pronounced violence, crime, drug use, rodent infestation, or seriously deteriorated and dangerous housing. Deteriorated, unsafe, and dangerous housing is also common in rural areas. It is important to consider that neighborhoods and dwellings that seem unacceptable to clinicians may have a very different history and meaning to patients and their families. Social workers, in consultation with patients and families, may create a care plan that includes collaboration with neighborhood groups and other organizations to advocate concerning the rights of patients and families with landlords and housing authorities. Frail, disabled, physically ill, and elderly individuals are at risk of self-imposed isolation due to deteriorated housing or from fear of crime, assault, and exploitation. Home assessments may also help uncover hidden issues such as physical, emotional, or financial abuse or neglect, including self-neglect that may occur in the struggle to accommodate to current conditions. Social workers, with patient consent, may collaborate with others to work with the family, neighbors, and local groups to improve some of these conditions. However, at times social workers may also need to consult with their interdisciplinary health teams to work toward a plan of care that weighs options and impacts on patients, families, and staff, and which may include reporting situations to county or citywide Adult Protective Services. Deciding whether a situation should be reported requires deliberation guided by state regulations as well as the professional ethics of team members and individual clinicians (National Association of Social Workers [NASW], 2008). Whenever possible, Adult Protective Services seeks to retain patients at home and with family members by setting up support services.
Collaboration with Trusted Local Community Leaders and Organizations
To overcome the challenges of serving inner-city and rural populations, some programs are developing innovative strategies for service delivery that involve creating partnerships with community leaders and with local organizations. Many of these require collaboration with members of the community (Weil, 2005). Local churches and congregations are often very active in rural and inner-city communities (Cnaan, Boddie, & Yancey, 2005). Church members can be helpful in providing care to families struggling with serious chronic and life-threatening illnesses once they become informed and aware of the importance of palliative care and learn ways they can assist. Such care should be offered in a sensitive way and never be imposed on families who are uncomfortable with it. Many rural and inner-city patients and their families identify their congregation as an important source of social support.
Social workers are skilled at assessing communities, identifying their strengths as well as their needs (Murty, 2004). They can work to bring together stakeholders to plan programs to meet the needs of elders and disabled members of the community initially exploring the needs of the general community rather than focusing too narrowly on palliative care (Balaswamy & Dabelko, 2002). A capacity-building approach is an appropriate strategy for building community involvement and support. A local team is created of community members and providers who work together to initiate and develop and sustain the palliative care program. Although additional resources are necessary, it becomes an extension of the networks and relationships that are already in place in the community (Kelley, 2007).
Palliative care programs at regional specialized medical centers and university teaching hospitals can play an important role in improving palliative care for inner-city and rural populations by using a model of community collaboration to enhance local services and integrate them with palliative care services provided by the medical center. Better integration of care between these regional health centers and inner-city and rural communities needs to be an ongoing priority. When patients from inner-city and rural communities turn to these tertiary care centers for palliative care, much of it may not be reimbursed because they are uninsured or underinsured. It will be cost effective and improve quality of care for these medical centers to link patients to innovative, effective community programs for follow-up care and support that are developed by local teams, as described earlier. Social workers at regional health centers and university teaching hospital palliative care programs could work to create linkages with local partners and communities and develop collaborative planning for palliative care (Kelley, 2007; Weil, 2005).
An innovative strategy for bringing this about would be to assign social workers to develop relationships in particular communities, inner-city neighborhoods, or rural towns. It would be important to maintain continuity so that the same social worker travels to the community to represent the regional medical center (Murty, 2005). It might not be realistic to expect social workers to build these relationships in all the communities served by a regional medical center, but by dividing up the communities and gradually developing relationships, home care, outreach, discharge planning, and community partnerships could all be improved.
To overcome the challenges of serving inner-city and rural populations, some programs are developing partnerships with local organizations that are not necessarily specialized in palliative care but do intervene to reduce factors that precipitate or worsen illness conditions. For example, agencies and shelters that respond to domestic or gang violence might become important partners for sharing the care of palliative patients and their families, especially in the inner city. Victims of violence often suffer emotional trauma, physical injuries and symptoms, and disabilities and would benefit from palliative care as the uncertainty of their medical condition evolves. Schools may provide a network of support and counseling for children from families struggling with serious illness.
Another strategy is to work with home health care agencies that are able to provide services in the home, even though they are not as intensive as those provided by outpatient palliative care or hospice to meet some of the needs of patients facing serious and life-threatening diseases. Providers for this kind of home health program have often built the relationships and trust in the community that will enhance care. Some rural programs have been successful at developing home palliative care programs to supplement their hospice program by using creative approaches of billing a variety of sources. An example is a palliative care program provided by Hospice of Siouxland in Sioux City, Iowa (personal communication, Linda Todd, Director). Similar programs have been developed to serve inner-city areas. Some private insurers are beginning to provide outpatient and home palliative care for patients who are not eligible or do not choose to be cared for by a hospice program, for example, Wellmark in Iowa (Nuhn, 2009). However, fewer rural and inner-city patients have private health insurance, and many of these new programs will not be available to many of these patients. Coverage for these home palliative care programs under Medicaid would be helpful. (For more information on home based palliative care programs, please see Chapter 10).
Critical access hospitals (CAHs) have become common in rural areas and have saved many local rural hospitals from closing. These CAHs could play a role in improving palliative care in rural communities. They offer a limited set of services and are intended to provide critical care close to home for patients who live far from comprehensive and specialized medical care. Critical access hospitals are certified to receive cost-based reimbursement from Medicare rather than the standard payments based on disease-related groups (American Hospital Association, n.d.). This special arrangement with Medicare helps these small hospitals survive, even though they do not have the economies of scale that benefit larger hospitals. Effective integration of local care at a CAH with specialized palliative care programs at regional and teaching hospitals could be an important innovation. Continuity of care through short-term stays at CAHs could be incorporated into the discharge planning for palliative care patients along with follow-up care under home health and hospice programs. A similar status for hospitals serving populations of poor and underinsured patients could be explored in inner-city areas.
One of the organizations commonly found in rural communities and inner cities is the local nursing home. Those in rural areas are often small, but like those in the inner city, some have a long history in the community and maintain close ties with families and churches, especially those that are stand-alone, nonprofit organizations. Providing palliative care in nursing homes is a viable strategy for rural areas and inner cities and could be greatly expanded (Miller & Mor, 2004). Hospice in nursing homes is growing rapidly and has been shown to be effective at improving the quality of care for patients at the end of life (Stevenson & Bramson, 2009). Because administrators and staff at nursing homes often lack understanding and awareness of palliative care and hospice (Bern-Klug, 2010; Center to Advance Palliative Care [CAPC], 2008), palliative care programs and hospices need to provide outreach and education. In developing both the skill sets and relationships with nursing facilities, social workers from regional medical centers can expand options for discharge planning for palliative care patients who need skilled nursing. Policies are needed to encourage pilot projects and hospice/nursing home collaborations to enhance the care of patients who are not receiving adequate palliative and end-of-life care (Miller & Mor, 2004).
Religious institutions in inner cities have long traditions of outreach into their neighborhoods to provide sanctuary, hope, and uplift to seriously ill individuals who may not adopt their beliefs or practices. For instance, individuals who are homeless, struggle with addiction, or are diagnosed with HIV/AIDS may attend a church-operated soup kitchen or be visited at home by church members who offer social and material support. Francoeur, Payne, Raveis, and Shim (2007) point out that religious support networks appear to be dynamic, and not necessarily hierarchical, in how they operate. The process of outreach may operate in both directions since seriously ill individuals, family members, and friends may also be seeking connections to religious institutions at points in the illness trajectory that are especially difficult. Integration of these religious networks into palliative or hospice care is likely to depend upon the inclusion of program staff of the same ethnic, socioeconomic, and linguistic backgrounds as major populations in the community (Crawley et al., 2000; Krakauer, Crenner, & Fox, 2002). Volunteers and paraprofessionals can supplement professionally trained staff without these backgrounds and facilitate communication across these differences.
Religious leaders such as church pastors may serve uniquely influential roles as neighborhood “opinion leaders.” Operating in conjunction with the Harlem Palliative Care Network (a grassroots network of community service providers who referred prospective patients for outpatient palliative care at North General Hospital), the Palliative Training and Education Program trained 130 local pastors and senior lay members from Harlem churches to provide bereavement ministries in their congregations with individuals, families, and support groups and to become better advocates for hospitalized church members (Canning & Payne, 2006). When clinically appropriate and if properly trained, pastors could also be called upon to explore spiritual beliefs and encourage patients and families to consider more adaptive coping beliefs to replace preoccupations that lack of faith is the cause of illness or that suffering is God's will. These preoccupations may cause delays in patients willingness to access health care. In a study of 146 inner-city African American and Latino outpatients from the Harlem Palliative Care Network, Francoeur and his colleagues (2007) revealed that among outpatients either identifying with a religion or affiliated with a religious institution, those who were uninsured reported more hopeful attitudes than other patients toward their pain and symptoms, while those who were covered only by Medicaid reported less hopeful attitudes. The authors suggest these findings may be related to evidence that referrals to palliative care are often delayed until late stages of the disease (i.e., Morita et al., 2005) and that uninsured populations may be at heightened risk. Consequently, “ exacerbated pain and symptoms may mean that full-blown conditions have become more difficult to control. Thus, more hopeful pain and symptom attitudes by uninsured patients anticipating Medicaid coverage could diminish over time once on Medicaid” (Francoeur et al., 2007, p. 426). These differences in health expectations between the uninsured and Medicaid groups suggest that clergy, church members, and neighborhood opinion leaders should give serious consideration about how to reach and refer uninsured (and underinsured) residents earlier in the disease course.
Clergy and church members may also be strong influences as neighborhood “opinion leaders” within inpatient palliative care settings and hospital hospice programs to personalize and uplift the institutional environments. An inpatient palliative care program serving inner-city African Americans in Birmingham, Alabama, The Balm of Gilead successfully tapped and directed neighborhood churches to visit patients, furnish their rooms, and host social events to overcome the depersonalized and institutional setting (Kvale, Williams, Bolden, Padgett, & Bailey, 2004). This Adapt-a-Room program resulted in high patient satisfaction with care, including high scores on the “transcendence/spiritual” domain of the Missoula VITAS scale, despite high illness severity and debilitation. Compared to outpatient and home-based models of care, this inpatient palliative care program was better able to meet the needs of this medically underserved population.
Influencing Community Perceptions of Palliative Care
Underserved inner-city and rural communities may be suspicious of palliative care, perceiving it as inferior or inadequate. This point of view may have been supported historically by hospice eligibility requirements that required patients to discontinue disease-modifying therapies, such as palliative chemotherapy or radiation treatment for cancer. In oncology, these types of palliative treatment can slow the advance or progression of cancer and the concomitant precipitation of new or intensified symptoms at later stages of the illness. These procedures can also provide satisfactory relief of pain. Fortunately, in some hospice programs Open Access policies have removed some of these restrictions (O'Mahony et al., 2008).
Many communities and practitioners are unaware that palliative care can be provided along the continuum of illness concurrently with disease-focused interventions. Palliative interventions provide holistic care, including relief of pain and symptoms throughout the illness continuum. When properly understood, palliative care may remain attractive to inner-city, minority, and rural populations as they continue to seek disease-modifying therapies. African Americans, for instance, are more apt to choose aggressive care when diagnosed with HIV (Mouton, Teno, Mor, & Piette, 1997) and agree to life support measures such as cardiopulmonary resuscitation, including residents of skilled nursing facilities (Braun, Beyth, Ford, & McCullough, 2008; Kwak & Haley, 2005; O'Brien et al.,1995). In addition to religious values, the limited options for health care available to lower socioeconomic and minority populations may also entrench preferences for aggressive care (Wolff, 2004). But these preferences can coexist with palliative care.
In some populations that have viewed hospice with suspicion, such as rural and inner-city African American communities, there might be greater receptivity to hospice if the patient and family received palliative care along the continuum of illness. Decisions about treatments should be based in an informed consent process and personal values and preferences and avoid suggesting that regulations, hospice philosophy, and financial limitations frame the options available. There is an important need for evidence to explore whether patients and families become more settled with coming to the end of life and receptivity to hospice, if they have engaged in a process that involved “prevailing against death” as long as they perceived any chance for survival.
Neighborhood “opinion leaders” knowledgeable about options for palliative and end-of-life care (Haas et al., 2007) may be critical messengers for broadcasting and marketing attractive program elements and overcoming misunderstanding about the options for care. The community reputation of the palliative care service may be reframed to one that integrates disease-modifying treatments along with palliative care. Moreover, the location of a palliative care service and an inpatient hospice within the same hospital, and educational outreach by opinion leaders about the roles and interface of both programs, may help build and maintain the viability of the hospice. In other settings, changing perceptions about the scope of palliative care requires an ongoing effort to differentiate palliative care from hospice programs. The assessment of the community in which one practices will determine the intervention most likely to enhance care and access to care for the populations requiring services.
The location of residential hospice programs within acute-care hospitals may help address fears by minority patients of lower quality care when hospice is received at home or in a separate hospice residence (Barrett, Hall, & Neuhaus, 1999; Barrett & Heller, 2001). An extended stay at a residential program within a hospital may also be a solution when potential for opioid diversion delays discharge home for a patient at the end of life. It should be recognized, however, that restricted Medicaid coverage or reimbursement rates in some states could limit their use unless private funding can be obtained. Recent legislation for federal health care reform raises Medicaid payments to doctors (Herszenhorn & Pear, 2010), which may be one variable that serves to enhance the feasibility of community hospices and residential hospices within acute care hospitals. Clearly, social work expertise and advocacy are important in assisting institutions to seek financial support for residences that provide care.
Hospice within skilled nursing facilities is often provided through a partnership with an outside, freestanding hospice organization (O'Mahony et al., 2008), but it may also be provided by the skilled nursing facility itself, who may choose to provide palliative and end-of-life care internally or have no access to a freestanding hospice. A critical constraint is that while hospice in skilled nursing facilities may be reimbursed through Medicare, some elderly residents cannot obtain Medicaid coverage for care in a skilled nursing facility (O'Mahony et al., 2008). Hospice housing/residence is another promising option that needs to be expanded in locations near inner-city or regional hospitals. In all options, provider teams reflecting the ethnic makeup of the community; outreach programs; trained volunteers and staff; and linkages with community programs are critical components that improve viability (Born, Greiner, Butler, & Ahluwalia, 2004).
Outreach to Underserved and Minority Populations
In inner-city and rural areas, underserved and culturally diverse groups need special attention from palliative care and hospice service providers. Since each culture is unique, learning from the members of each group, building trust, and adapting the program to the community are essential for a culturally sensitive palliative care program.
Inner cities have had culturally diverse populations for many years. Although many rural communities have traditionally had little cultural diversity in the United States, some have Native American, African American, and Latino populations. Other rural communities have recently received immigrants and refugees representing a range of diverse cultures (Dalla, Villarruel, Cramer, & Gonzalez-Kruger, 2004). The immigrant population in inner cities has also increased; for example, Houston, Phoenix, Las Vegas, and Atlanta dramatically increased their Hispanic populations in the 1990s (RapidImmigration.com, n.d.). (See Table 13.2 for information on palliative care considerations that may be helpful in providing services for African Americans, Latinos and Native Americans in rural and inner city areas).
Table 13.2. Issues Related to Palliative Care for Some Ethnicities in Rural and Inner-City Areas
Both in inner-city and rural areas;
common in rural South
Hesitant to acknowledge dying
Reluctant to complete advance directives
May prefer to use all medical measures
Distrust of professional medical care
Religious beliefs that sufficient faith will cure serious illness
Support of church community and family consensus important to many families
Low hospice use but growth in enrollment over time
Bullock, 2006; Francoeur, Payne, Raveis, & Shim, 2007; Haas et al., 2007; National Hospice and Palliative Care Organization (NHPCO), 2003; Rosenfeld, Dennis, Hanen et al., 2007; Smith, 2004; Washington, Bickel-Swenson, & Stephens, 2008
Both in inner-city and rural areas;
recently many Latinos immigrate to rural communities to work in agriculture and meat packing (Henness, 2002)
Desire to return to home country to die and be buried
Support of church community and family consensus important to many families
Reliance on traditional medicine
Language and cultural differences
Many have no health care coverage and may be undocumented immigrants
Low hospice use but growth in enrollment over time
Believe death may occur prematurely from loss of hope when informed about dying
Barrett et al., 1999; Baxter, Bryant, Scarbro, & Shetterly, 2001; Dalla & Christensen, 2005; Diaz-Cabello, 2004; Gutheil & Heyman, 2006; Gouveia & Stull, 1997; National Hospice and Palliative Care Organization, 2003; Randall & Csikai, 2003; Rosenfeld, Dennis, Hanen et al., 2007; Smith, Sudore, & Pérez-Stable, 2009; Topoleski, 1997
Although Native American Nations are located primarily in rural areas, many Native Americans migrate to urban areas and may be found in inner-city areas.
Varied beliefs among different Native American nations
May avoid acknowledging death is close
Family tends to care for members who are ill and resists care from outsiders
Language and cultural differences
Traditional culture and religion affect beliefs about medicine and death
Many residents of rural areas share what may be considered rural culture. Typical values and attitudes are self-reliance; conservatism; work orientation; emphasis on family and religion; individualism; distrust of outsiders; and traditional gender roles (West Virginia University Center on Aging, Mountain State Geriatric Education Center, nd). Of course not all rural residents share in this culture, but it is helpful for service providers to be aware that they may encounter these values and attitudes, especially among older residents of rural communities.
Similarly, many residents of inner cities share what may be considered inner-city culture, which is also characterized by an emphasis on family, and in certain groups, religion and religious support networks, as well as traditional gender roles and distrust of outsiders. In some contexts or individuals, there may be attitudes and behaviors that reflect machismo and a “street smarts” sensibility, while in other contexts or individuals, there may be attitudes and behaviors of withdrawn invisibility. These strategies may be unconsciously adopted to protect individuals and their loved ones from violence, trauma, victimization, stigma, and unrelenting urban stress (Altman, 1995). Again, not all residents share in this culture, but service providers need to be aware that they may encounter these values and attitudes, which may restrict palliative social work assessments. For instance, mental illness concepts such as depression can be stigmatizing to inner-city and rural residents, suggesting a character defect, mental derangement, or weak masculinity. However, depression may exacerbate the experience of pain and other physical symptoms and increase the risk that regimens for care and medication will not be followed. Ambivalent or missing responses to a single item screening for depression identified additional older minority men from Harlem who were at risk for hidden depression, and potential problems with care and impaired quality of life (Francoeur, 2006). Therefore, creative assessment screens should be incorporated into clinical assessment, especially short, standardized scales known as rapid assessment instruments (RAIs).
Homeless people are a unique group common in inner-city areas (Lee & Price-Spratlen, 2004). Homeless inner-city populations are described in Lashley (2006) and Kertesz, Hwang, Irwin, Ritchey, and LaGory (2009). Homelessness is also a problem in rural areas, even though it is less prevalent and more hidden (Rollinson & Pardeck, 2006). Providing palliative care and hospice to homeless individuals is especially challenging. Homeless shelters are often unable to manage health care demands for residents, and the lack of a primary care provider may limit access to hospice (O'Mahoney et al., 2008). They frequently have very limited financial resources and no health coverage, yet they commonly have serious chronic illnesses and would benefit from palliative care. Because homeless individuals are indigent, they tend to receive care from state-funded hospitals as the service provider of last resort, and their care can be quite expensive and unlikely to be reimbursed. End-of-life care is often received in the emergency room, where it is most expensive. Some development of hospital-based residential palliative care and homeless shelter-based hospice to serve the homeless population has occurred (Kushel & Miaskowski, 2006; Podymow, Turnbull, & Coyle, 2006). In addition, a hospice residence in the Bronx, established in 2005 and operated by the Jacob Perlow Hospice, admitted 38 homeless individuals out of 136 sequential total admissions (O'Mahony et al., 2008). Innovative approaches to reach homeless patients are needed so that they can be offered options and choose the kind of care they want, improving the quality of the end of their lives and perhaps also reducing public costs.
Continuity of Care throughout the Disease Course
An important strategy for improving palliative care in inner-city and rural areas is to work to establish continuity of care as patients' progress through various stages of a serious life-threatening disease. Regional health centers that deploy social workers in outreach programs to rural and inner-city communities can help maintain continuity of care and counter the shortages of social workers and other palliative care professionals that exist in these areas. Social workers have the skills to engage the interdisciplinary health team in identifying opportunities to work toward greater continuity and better coordination for patients who are cared for by various physicians and providers. We recognize that this may be challenging in many circumstances. Social workers in settings such as primary care, home health care, nursing homes, hospital, and hospice can integrate palliative care principles and assess needs, advocate and intervene from the time of diagnosis, and provide needed services at every phase of the disease rather than waiting until a hospice referral has been made (Jennings et al., 2003). The importance of coordination of care is highlighted by findings that many patients receive care from 10 or more physicians in the last 6 months of their life (Wennberg, 2008). Social workers can play a major role in building a relationship with the patient and family, which builds continuity of care among providers to ensure excellence and quality in ongoing care.
Social work can play a major role in improving palliative and hospice care in inner-city and rural areas. Although the challenges of providing services in these areas are daunting, the skills of social workers equip them well to engage in relationship building and problem solving to take on these challenges successfully. We have suggested a series of innovative strategies to consider for serving these underserved communities more effectively.
The authors would like to acknowledge the generous assistance of colleagues with expertise in rural palliative social work (N. Joel Fry, Team Restoration Ministries, Johnston, IA; Sherri Weisenfluh, Hospice of the Bluegrass, Lexington, KY; and Marvin Fagerlind, Cedar Valley Hospice, Waterloo, IA) and pain medicine in the context of the disease of addiction (Russell Portenoy, MD, Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, NY).
Read Table 13.1 and answer the following questions:
1. Identify the integrated health care systems that serve inner-city and/or rural communities in your geographic region. Do you believe each health care system is large enough to negotiate successfully for significant cost savings from online bulk medication suppliers?
2. What smaller hospitals and health care affiliates might form a consortium? What may be some strategies for social work advocacy?
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