Grace Christ, DSW - Columbia University, School of Social Work
Sadhna Diwan, PhD - San Jose State University, School of Social Work.
The Demographics of Aging and Chronic Diseases
Synopsis
With the increase in older populations around the globe comes an increase in the incidence and prevalence of chronic conditions. Contributing to this situation is a disease process that has changed: The rapid progressive illnesses and deaths of yesteryear (infectious diseases and, more recently, cancers) have been replaced by vastly increased survival rate from such illnesses and a pandemic-like shift from acute to chronic illness, with long years of survival that are often accompanied by a reduced quality of life requiring more and longer home care.
This section describes some of the most recent literature covering the demographics of aging and chronic conditions, and the nature and impact of chronic conditions that disproportionately affect minority subpopulations in the United States.
The Demographics Of Aging
Changes in the Characteristics of the Older Population
During the 20th century, the health status of older Americans changed significantly as a result of several trends:
- The size of the aging population will reach nearly 20% worldwide by 2050.
U.S. demographics: The rapid aging of the American population is among the major public health challenges we face in the 21st century. Figure 1 on the Number of Older Americans shows the large growth of the population 65 and older from 1900 to 2006 and the even greater projected growth from 2006 to 2050. It also shows the growing numbers of persons 85 and older and their large projected growth to 2050. In 1900, people over 65 years of age were approximately 4% of the population. Today, slightly more than 100 years later this segment represents 12.4% of the population. Between 1930 and 2010 is a slow and steady increase in the older population. In 2010, when the baby boomers (those born between 1945 and 1951) begin turning 65, the percentage increases sharply from a little over 10% to approximately 17% by 2030. From that year onward, the percentage increases at a more gradual rate, ending in 2050 at approximately 19%. (Federal Interagency Forum, Older Americans 2008: Key indicators of well-being, 2008).
- Worldwide demographics: The older population has increased worldwide as well as in the U.S.
Ten percent of the world’s population now is over the age of 60 years. By 2050, it is expected to reach 20%. By 2050, the actual number of people over the age of 60 will be almost 2 billion, at which point the population of older people worldwide will be greater than the population of children up to age 14 years (Ries, Elsner, & Kosary, 2000)
- Improved medical care and prevention have resulted in a vastly increased life expectancy over the 20th century.
The primary reason for the increase in the older population is the fact that people are living longer. Improved medical care and prevention efforts have contributed to dramatic increases in life expectancy in the U.S. over the past century. At the turn of the 19th century, the average expected lifespan was 46 yearssâ€the average length of time one could expect to live if one were born in 1900. Today, the average life expectancy is 77.9 years. Approximately four out of five individuals can now expect to reach age 65, at which point there is a better than 50% chance of living past age 80 (National Center for Health Statistics, 2000). According to the U.S. Census Bureau, life expectancy at birth is projected to increase from the current 77.9 years to 82.6 by 2050. (View Figure 2.)
- Mortality rates from the young old to oldest old are decreasing.
The older population itself is aging. Mortality rates in adulthood have declined significantly, resulting in an unprecedented number of people who are reaching advanced old age and are more likely to require long-term care (Administration on Aging, 2005). The number of people aged 65 to 74 years has increased 8-fold, the number aged 75 to 84 has increased 12-fold, and the number older than 84 years has increased by a factor of 23.
- The old-age dependency ratio is increasing dramatically.
One consequence of the growth of the aged population is the dramatic increase in the old-age dependency ratio. This ratio represents the size of the population that is aged (either 65 years or 85 years plus) relative to the size of the population that is in the age range of the labor forceeâ€conventionally expressed as the population aged 15 to 64 years.
The old-age dependency ratio represents 1) the relative balance between the entitlement claims of the aged (social security) and the taxes placed on the earnings of the younger working-age generations, and 2) the balance between the demands for formal and informal care posed by a large aged population and the formal and informal elder care labor resources available from younger generations. Figure 3 shows the growth in old-age dependency ratios for the populations aged 65+ and 85+ over the next 50 years, based on the “middle case” or most likely projections regarding the aging population. This ratio is important because as it increases, there is increased strain on those in the labor force to support those who are economically dependent.
- The aging population is becoming more racially and ethnically diverse.
The 2007 CDC report, The State of Aging and Health in America, highlights the growing ethnic and racial diversity of the older adult population(CDC & The Merck Company Foundation, 2007). Figure 4 of Racial and Ethnic Composition shows the strong projected growth of the minority older population, which will reach 39% of the 65 and over population in 2050. African American elders are project to grow to 12% in 2050 and Hispanic elders are projected to grow to 18%.
- There is growing evidence of disparities in health outcomes among older adults, depending on race, ethnicity, and economic status.
The health status of racial and ethnic minorities of all ages lags far behind that of nonminority populations. Older minority adults may feel the disparity in health care more acutely because they are likely to have chronic illnesses and require interaction with health systems that have fewer resources for prevention, screening, and treatment. Many live in poverty, which makes access to health care even more difficult at a vulnerable time when they are experiencing multiple chronic conditions that may require frequent treatment and monitoring to control symptoms and advancing disease (CDC & The Merck Company Foundation, 2007).
Figure 5 of Respondent-Assessed Health Status shows that the percentage of persons over 65 who report good to excellent health declines with age. Regardless of age, older non-Hispanic white men and women are more likely to report good health than are their non-Hispanic black and Hispanic counterparts. Non-Hispanic blacks and Hispanics are similar to one another in their positive health evaluations, although among men age 85 and over, Hispanics report the lowest health ratings. Poorer self-rated health among older persons is consistently found to be an independent predictor of mortality (Idler & Benyamini, 1997).
Other indicators of well-being, such as income, living arrangements, education, and health behaviors, also influence one’s ability to manage chronic illness successfully and should be addressed when working with individuals diagnosed with chronic illnesses and their families. These factors, coupled with the ageism and stigma present in American society, can present significant barriers to the prevention and maintenance of chronic illnesses in older adults (Federal Interagency Forum, 2008).
Chronic Diseases and Aging
- Chronic diseases are the leading causes of death among older adults.
Although improved medical care and prevention efforts contributed to dramatic increases in life expectancy in the U.S. during the 20th century, they also produced a major shift in the leading causes of death and disability in all age groups, including older persons. The causes of death shifted from infectious diseases and acute illnesses to chronic and degenerative diseases (CDC, 2003). In 2002, the top three causes of death for U.S. adults aged 65 or older were heart disease (32% of all deaths), cancer (22%), and stroke (8%). These accounted for 61% of all deaths in this age group. (View Figure 6.)
- The pain and disability associated with chronic diseases can diminish quality of life.
Death is only part of the picture of the burden of chronic diseases among older Americans. These conditions can cause years of pain, disability, and loss of function and independence before resulting in death. One out of 10 Americans, or approximately 25 million people, report that they have physical limitations as a result of one or more chronic illnesses. Although chronic diseases affect people of all ages, the risk of chronic illness increases with age, and people aged 65 years or older are more apt to have multiple chronic illnesses. At least 80% of people older than 60 are living with one chronic illness, but 50% older than 60 are living with two chronic illnesses (CDC, 2003). Because chronic diseases can lead to limitations in daily activities, they often reduce the health-related quality of life for seniors. Figure 7 shows the percentage of men and women over 65 reporting selected chronic conditions. Over half of men and women reported hypertension with arthritis and heart disease as the next most common conditions.
- Poor health or functional limitation is not an inevitable result of chronic illness.
Some evidence from large national health surveys indicates that the older population today is generally healthier than were previous cohorts. Rates of disability are declining or stabilizing, and recovery from acute disabilities is improving (NCHS, 2006). The possibility of a longer period of active life expectancy versus a dependent life expectancy is projected (Katz et al., 1983). Dependent life expectancy is defined as the period during which a person must rely on others for assistance with most activities of daily living (ADLs). As life expectancy has increased beyond age 65, only about a quarter of those years are spent in a dependent state (Manton & Land, 2000; WHO, 2002). Figure 8 on Functional Limitations shows the percentage of Medicare enrollees age 65 and over who have limitations in ADLs and instrumental activities of daily living (IADLs) from 1992 to 2005. It shows a decrease in the level of ADL and IADL limitations during these years.
- Facilitation of an independent longer life is possible.
A longer active life, as opposed to a longer life characterized by dependency and disability, can only occur with adequate management of the chronic illnesses that often accompany old age and management of social and health behaviors throughout life, such as diet, smoking, alcohol consumption, physical activity, and a healthy environment in which to live and work. All these factors play a role in the development and progress of chronic conditions. The capacity to manage these conditions and maintain health is also influenced by current health behaviors, social supports, and access to health care (Putnam et al., 2003). The level of disability people experience at different ages is correlated with whether they smoke, exercise, and maintain their weight within recommended ranges. People who are in the higher-risk group because of difficulty adhering to a healthy lifestyle experience greater disability at an earlier age (CDC & The Merck Company Foundation, 2007).
- Chronic diseases are responsible for a large percentage of health care costs.
An increased public health focus on ways to prevent or delay disease and disability among older adults is aimed in part at reducing the ever-increasing costs of health careeâ€attributable in large part to the increasing size of the older population. An important statistic is that more than two-thirds of health care costs are currently devoted to the treatment of chronic illnesses. Among older Americans, treatment of these illnesses accounts for almost 95% of health care expenditures in the U.S. (Hoffman, Rice, & Sung, 1996).
Although the cost of providing health care for people aged 65 or older is three to five times greater than the cost of providing care to younger people, some of the chronic health problems reported in people aged 55 to 64 years suggest the likelihood of greater functional decline as they age. In 2003, 42% of adults in this age group were told they had high blood pressure, and 56% of them did not meet recommended guidelines for physical activity. Importantly, 12.5% were diagnosed with Type 2 diabetes, an important etiology of which is obesity. These statistics suggest that finding ways to prevent or delay disease and disability among older adults could not only improve their quality of life but stem the tide of rising health care costs as well.
- Psychosocial problems and the impact of chronic conditions are interrelated.
In multiple reports on a broad range of illnesses and conditions over more than two decades, the Institute of Medicine (IOM) has issued strong findings about the important role of psychological/behavioral and social factors in health and has recommended that more attention be paid to these factors in the design and delivery of health care.
Health and disease are determined by dynamic interactionsamong biological, psychological, behavioral, and social factors. (IOM, 2001, p. 16)
Because health…is a function of psychological and social variables, many events or interventions traditionally considered irrelevant actually are quite important for the health status of individuals and populations. (IOM, 2001, p. 27)
- The American health care system has become more fragmented and challenged by the increasing numbers and complexity of cases of chronic illness.
The American health care system, often characterized by fragmentation and lack of coordination of services, has increasingly been challenged by the costs of caring for the rapidly expanding chronically ill population.
Chronic conditions are costly, especially if managed poorly. Currently more than two-thirds of health care expenditures are for treating chronic illnesses; among older Americans, almost 95% of health care expenditures are for chronic diseases (CDC & The Merck Company Foundation, 2007; Hoffman et al., 1996). In addition, the 23% of Medicare beneficiaries who have five or more chronic conditions accounts for 68% of all Medicare spending (Anderson, 2005).
In this stressful environment, with increasing numbers of patients with complex chronic conditions, many providers fail to follow evidence-based guidelines and are not well versed in self-care management strategies (Centers for Medicare & Medicaid Services, 2004). Patients with chronic conditions visit their health care providers, fill prescriptions, and are hospitalized more often than the general population. And they are more likely to experience poorly coordinated care, which can lead to adverse drug interactions, unnecessary or duplicate tests or procedures, and conflicting information from multiple providers. This lack of coordination often results in poor clinical outcomes, repeated hospitalizations, excessive use of prescription drugs, medical errors, dissatisfaction with care, and higher costs. The current long wait times in emergency rooms is clear evidence of the system’s difficulty in managing the number of patients and their conditions. Too often emergency rooms are overwhelmed by people who are not being adequately treated in primary care settings because they lack insurance or are in crisis related to their chronic diseases, or both (Blaum et al., 2001; Chen, Brown, Archibald, Aliotta, & Fox, 2000).
References
Anderson, G. (2005). Medicare and chronic conditions. New England Journal of Medicine, 353(3), 305-309.
Administration on Aging. (2005). A profile of older Americans aged 65 +. Washington, DC: U.S. Department of Health and Human Services.
Blaum, C., Douglass, B. A., Marion, L. N., Olivares, E., Prela, C., & Scalettar, R. (2001). Mainstreaming care coordination for people with complex health care needs. Retrieved August 8, 2008, from www.primarycaresociety.org/2001a.htm.
Centers for Disease Control and Prevention (2003). Public health and aging: trends in aging—US and Worldwide. Retrieved August 8, 2008, from www.cdc.gov/mmwr/preview/mmwrhtml/mm5206a2.htm.
Centers for Disease Control and Prevention & The Merck Company Foundation. (2007). The state of aging and health in America 2007. Whitehouse Station, NJ: The Merck Company Foundation. Retrieved August 8, 2008, from www.cdc.gov/aging/saha.htm.
Centers for Disease Control and Prevention. (2008). Healthy aging: Preserving function and improving quality of life among older Americans. Retrieved August 8, 2008, from www.cdc.gov/nccdphp/publications/aag/pdf/healthy_aging.pdf.
Centers for Medicare and Medicaid Services. (2004). Medicare coordinated care demonstrations fact sheet. Washington DC: Centers for Medicare and Medicaid Services. Retrieved August 12, 2008, from www.cms.hhs.gov/DemoProjectsEvalRpts/downloads/CC_Medicare_Fact_Sheet_01_19_2001_p.pdf.
Chen, A., Brown, R., Archibald, N., Aliotta, S., & Fox, P. (2000). Best practices in coordinated care. Retrieved August 8, 2008, from www.mathematica-mpr.com/publications/PDFs/bestpractices.pdf.
Federal Interagency Forum. (2008). Older Americans 2008: Key indicators of well-being. Washington, DC: Government Printing Office.
Hoffman, C., Rice, D., & Sung, H. (1996). Persons with chronic conditions: their prevalence and costs. Journal of the American Medical Association, 276(18), 1473-1479.
Idler, E. L., & Benyamini, Y. (1997). Self-Rated health and mortality: A review of twenty-seven community studies. Journal of Health and Social Behavior, 38(1), 21-37.
Institute of Medicine. (2001) Crossing the quality chasm: a new health system for the 21st century. Washington, DC: The National Academy Press.
Katz, S., Branch, L. G., Branson, M. H., Papsidero, J. A., Beck, J. C., & Greer, D. S. (1983). Active life expectancy. New England Journal of Medicine, 309, 1218-1224.
Manton, K. G., & Land, K. C. (2000). Active life expectancy estimates for the U.S. elderly population. Demography, 37, 253-265.
National Center for Health Statistics. (2000) Life expectancy at birth: 1940 -1998. National Vital and Health Statistics Report.Hyattsville, MD: Author.
National Center for Health Statistics. (2006). National vital statistics reports. Hyattsville, MD: Author.
Putnam, M., Greene, S., Powers, L., Saxton, M., Finney, S., & Dautel, P. (2003). People with disabilities discuss barriers and facilitators to well being. Journal of Rehabilitation, 69, 37-45.
Ries, L. A. G., Eisner, M. P., Kosary, C. L., Hankey, B. F., Miller, B. A., Clegg, L., et al. (Eds.). (2000). SEER cancer statistics review, 1973-1997: Tables and graphs. Bethesda, MD: National Cancer Institute. Retrieved August 8, 2008, from www.seer.cancer.gov/Publications.
World Health Organization. (2002). Active ageing: A policy framework. Geneva: WHO ageing and the life course section. Retrieved August 12, 2008, from http://whqlibdoc.who.int/hq/2002/WHO_NMH_NPH_02.8.pdf
Document Date: September 11, 2009
Health Statistics Web Sites
- Centers for Disease Control and Prevention, Center for Health Statistics, Trends in Health and Aging. Available at http://www.cdc.gov/nchs/agingact.htm
- Centers for Disease Control and Prevention & the Merck Company Foundation. The State of Aging and Health in America 2007. White house Station, NJ: The Merck Company Foundation. Available at http://www.cdc.gov/aging.
- Federal Interagency Forum on Aging Related Statistics. (2008). Older Americans Update 2008: Key Indicators of Well-Being. Washington D.C., U.S. Government Printing Office Available at http://agingstats.gov.
General Web Sites
- World Health Organization. Preventing Chronic Diseases: A vital investment. This report and website contains information on global issues related to the prevalence, impact, and prevention of chronic diseases across the life span. Contains fact sheets, country-based information, technical papers on projections of morbidity, mortality, and impact of chronic diseases. Also has a short video (7 minutes) related to the myths of chronic diseases and their prevalence around the world. Excellent resource for faculty and students interested in global health issues to view chronic diseases among older persons in a larger context. May be useful to assign students to review the information and compare and contrast with what is known in the American context. Available at http://www.who.int/chp/chronic_disease_report/en/index.html
Document Date:
September 11, 2009
Download this PowerPoint for Section of 2.1 of the Health Resource Review.
Document Date: September 11, 2009
Grace Christ, DSW - Columbia University, School of Social Work
Sadhna Diwan, PhD - San Jose State University, School of Social Work.
The Role of Social Work in Managing Chronic Illness Care
Synopsis
Managing chronic illness presents a profound challenge to the social work profession, not only because of the myriad formal and informal services required by the increasing number of chronically ill elders, but also because the caregivers, too, require our support and empowerment. As professionals, social workers experience first-hand the effects of the met and unmet patient needs, which brings with it a responsibility to insure that practice and policy decisions give full recognition to the impact of psychosocial aspects and services that provide total care to chronically ill older adults and their caregivers.
This section describes some of the most recent literature addressing the role of social workers in managing chronic illness care specifically related to conducting biopsychosocial assessments, providing interventions, and in designing and implementing effective models of health services delivery such as care coordination.
Characteristics of Chronic Illness as They Impact the Social Work Role
Three important characteristics of chronic illnesses among older adults need to be considered as they affect the social work role and function.
- The trajectory for many serious illnesses has changed from an acute terminal course to a much longer chronic period, with episodes of exacerbations and remissions interspersed with extended periods of good functioning.
- The trajectory of advanced chronic and terminal illnesses has changed from a relatively brief period to a longer period in which both curative and palliative treatments are combined. Research suggests that a long, advanced chronic illness can be highly stressful for both patients and their families.
- The increase in the total number of older people with advanced chronic and terminal illnesses will require more curative and palliative care being provided in the home, with greater reliance on provision by family members.
Advances in medical care have changed the illness trajectory in ways that dramatically alter the older adult’s experience of chronic illness. Facilitating and enhancing positive health behaviors at all stages of life as well as effective management of chronic illness is central to the social worker’s role, knowledge, value, and skill base in health care.
The specific role of social workers in health care is to address psychological, behavioral, and social factors by (1) assessing patient and family psychosocial health needs, (2) providing interventions required to address their psychosocial needs and promote their adaptation to illness and disability, and (3) developing and implementing effective models of health services delivery. The following sections provide an overview of issues related to Biopsychosocial Assessment of older persons with chronic conditions; a description of the range of social work interventions relevant to the management of chronic conditions; and a description of the evidence base of one model of service delivery: care coordination for older persons.
Psychosocial Assessment of Older Adults with Chronic Conditions
Because of the frequency of multiple chronic conditions in older adults, a comprehensive biopsychosocial assessment of needs and resources has become the most important part of service delivery and is the beginning of the intervention process to address the management of chronic conditions among them. The National Association of Social Workers (NASW, 2005) and the American Geriatrics Society (AGS, 2005) recommend a biopsychosocial approach to the assessment of older adults. This section reviews the evidence supporting comprehensive geriatric assessments and, using a biopsychosocial framework, describes the rationale or evidence supporting seven typical domains of psychosocial assessment for social workers in the management of chronic illnesses.
Comprehensive Assessments
- Comprehensive geriatric assessment (CGA) and geriatric evaluation and management (GEMs) programs have shown positive impact on improving or maintaining cognitive and physical function (Urdangarin, 2000).
These programs have shown increased likelihood of patients living at home, decreased likelihood of hospitalization during follow-up, and a reduction in mortality.
- The primary component of CGA and GEM programs is an interdisciplinary team consisting primarily of physicians, nurses, and social workers.
Comprehensive assessment and management programs for the care of older adults in the health care system have been evaluated in the U.S. over the last decade and have shown positive outcomes. For example, the CGA programs without follow-up care and the GEMS programs that incorporate follow-up care and management have reported favorable effects on cognitive and physical functioning, an increased likelihood of living at home, a decreased likelihood of hospitalization during follow-up, and a reduction in mortality (Urdangarin, 2000). The primary component of these programs is an interdisciplinary team consisting mainly of physicians, nurses, and social workers, but also can include specialists from fields, such as occupational and physical therapy, nutrition, pharmacy, audiology, and psychology (Agostini, Baker, & Bogardus, 2001; Wieland & Hirth, 2003).
CGA is more effective when it is targeted to older adults with functional impairments, geriatric syndromes, or high use of hospital and nursing home care. The American Geriatrics Society (AGS) issued the following position statement in 2005: “Comprehensive geriatric assessment has demonstrated usefulness in improving the health status of frail, older patients. Therefore, elements of CGA should be incorporated into the care provided to these elderly individuals” (http://www.americangeriatrics.org). The degree to which those elements have an impact on patients is still being evaluated, but components of CGA have already become an accepted part of geriatric primary care and inpatient consultation services, especially in managed health care programs.
- Comprehensive assessment, however, is not feasible for all older persons; therefore, programs have developed criteria to target individuals most likely to need such assessments.
These criteria include people who have functional impairments in their ability to perform activities of daily living (ADLs); have one or more geriatric syndromes, such as falls, depression, dementia, delirium, or weight loss; or show patterns of high use of hospital or nursing home placements (AGS, 2005).
- With increasing numbers of elders with chronic illness living in the community, screening and assessment has become increasingly important to the provision of continuity of care to identify those with biopsychosocial needs.
Social workers provide health and mental health services to the elderly in a variety of settings across the continuum of care (Berkman, Maramaldi, Breon, & Howe, 2002). They help older people who are active and healthy, as well as those who have poor health, and address the needs of the elderly who live in the community, as well as those hospitalized or in long-term care institutions. Many people are not aware of available social services, and families with serious social problems are not finding the community resources and services they need. Regardless of site, screening and assessment of need for psychosocial help are still the most important part of service delivery and mark the beginning of the intervention process (Berkman et al., 2002).
Process of Conducting Geriatric Assessments
Conducting comprehensive geriatric assessments involves using general social work clinical interviewing skills as well as knowledge of special conditions that may apply to working with specific populations. Geron (2006) and Berkman and colleagues (2002) summarize these skills and processes as:
o Establishing rapport with the respondent
o Explaining the purpose of assessment
o Using observation and clinical judgment
o Assessing the client’s preferences (Kane & Degenholtz, 1997)
o Knowing human behavior and caregiver dynamics
o Demonstrating cultural competency in addressing and understanding diverse groups of older persons
For a review on the social work processes involved in conducting geriatric assessments and a discussion of special issues in working with older persons, see Geron (2006).
Biopsychosocial Framework for Seven Domains of Assessment
- The conceptual framework that supports comprehensive geriatric assessment, evaluation, and management is a biopsychosocial approach to understanding chronic illness care.
- These domains of assessment along with the rationale or evidence supporting specific areas of assessment are adapted from Diwan & Balaswamy, (2006) and presented in Table 1.
- To develop a substantive understanding of an older adult’s needs and resources there are seven typical domains of assessment that are important for social workers.
1) Physical wellbeing and health
2) Psychological wellbeing and mental health
3) Cognitive capacity
4) Ability to perform basic ADLs and instrumental activities of daily living (IADLs)
5) Social Functioning
6) Physical environment
7) Assessment of family caregivers
Biopsychosocial Needs and Services for Chronic Illness Care
- Aging populations require diverse biopsychosocial services from both formal and informal sources.
Biopsychosocial services are defined as those psychological, social, and health care services that enable patients, their families, and health care providers to manage the psychological, behavioral and social aspects of illness and its consequences and thus promote better health (Institute of Medicine, 2007). When informal support is insufficient to address a patient’s needs, more formal services are needed. Table 2 lists the common biopsychosocial health needs of elders with chronic illnesses together with typical community-based services that can be helpful in meeting these needs (Institute of Medicine, 2007).
- The evidence supporting the effectiveness of various biopsychosocial services is mixed.
In a comprehensive review of the literature on the effectiveness of psychosocial health services for patients with cancer, the Institute of Medicine (2007) notes that there is generally good evidence (through meta analyses of randomized controlled trials) of the effectiveness of psychotherapeutic services, especially cognitive behavioral therapy, that help ameliorate emotional distress that co-occurs with many chronic illnesses. A similar level of evidence exists for behavioral interventions that help individuals manage their symptoms and improve their overall health. However, many interventions, such as the provision of transportation, financial assistance, and medication assistance, have not been examined specifically for effectiveness but are widely accepted as humanitarian services necessary to address basic needs. Many of the services and studies reviewed in this report address not just cancer, but a number of other chronic illnesses as well.
Coordination as a Model of Health Services Delivery: The Evidence Base
What Is Care Coordination?
- Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of health care services (McDonald et al., 2007).
This overarching construct includes programs of intervention that have been referred to by such terms as disease management, case/care management, multidisciplinary team management, and patient navigation. Social workers are increasingly called on to participate in the development and implementation of these programs because they often incorporate many social work functions and provide major opportunities to improve the quality and effectiveness of patients’ health care, a core social work commitment.
The Need for Care Coordination
- The structure of the health care delivery system in the U.S. is marked by fragmentation, complexity, pervasive deficiencies, and remarkable variation in patient safety and healthcare quality (McDonald et al, 2007).
- Additionally, older patients are more vulnerable to the negative consequences of this fragmentation as they often have complex management regimens for their chronic conditions, strained or reduced family support, and lower health literacy (McDonald et al, 2007).
- The range of psychosocial services described earlier that are useful in improving the health and quality of life of elders are located in various delivery systems in the community, making it difficult for elders and families to access these services.
- The following summary statement characterizes the view of many health professionals about current challenges to the health care system.
Providers and decision makers at the health service delivery level are caring for patients with increasing needs for coordination services in a system that is progressively becoming more fragmented. Physicians report that time constraints are a major barrier to patient care. Coordinating care for patients takes time; time that is typically not reimbursed. As the population ages, as the number of people with multiple chronic medical problems increases, and as patients see more doctors and receive care at a greater number of healthcare settings, the need to coordinate care will continue to increase. This increase in need is occurring in an environment in which cost containment efforts result in decreased access to social support services. While the need for coordination increases, healthcare providers frequently lack the infrastructure and resources to respond to their patient’s needs. (McDonald et al., 2007, p. 32)
These new challenges to the health care system have led to widespread interest in ways to improve the effectiveness and efficiency of medical care for chronic conditions. In the last decade, one intervention has received increasing attention in work with older adults with chronic illnesses: coordination of care.
In 2003, the IOM identified care coordination as among the key strategies to deal with escalating problems in the treatment of chronic conditions (IOM, 2003). In 2007, the Agency for Health Care Research and Quality (AHRQ) issued a review and synthesis of the evidence base for the effectiveness of these approaches to intervention (McDonald et al., 2007). It provided a working definition of care coordination programs, identified the range of components, provided a critique of their effectiveness, and made suggestions for future program development and research.
Models of Care Coordination Programs
- The need for care coordination is critical at several points in the health care delivery system and several models of care coordination programs have been developed to address specific needs.
Table 3 outlines some of the major models of care coordination and, for each model, provides an example of an evidence-supported care coordination program and its specific outcomes. Many of these models of care coordination include social workers in the intervention. Readers are referred to the 2008 Institute of Medicine (IOM) report, the National Registry for Evidence-based Programs (NREPP), the Centers for Disease Control and Prevention (CDC), and Care Transitions.Org for more details on each program.
Features of Innovation Care Coordination Models
The IOM (2008) committee report did not attempt to rank the models described above or to recommend one model of care over another. In fact, little evidence exists that one might use to rate the relative effectiveness of these different approaches. Typically, evaluations focus on whether a single model proved to be successful rather than identifying which of several models produced the strongest results.
- The committee concluded that no single one of the models described above would be sufficient to meet the needs of all older adults. The health care needs of the older population are diverse, and addressing those needs requires varying models of care to meet their specific requirements.
For example, preventive home visits may be too costly to expand to all older persons, the majority of whom may not even require that level of care. Similarly, caregiver-support programs may not be sufficient for older adults with more intensive needs. The models described above have generally been successful in enrolling mainly those older adults who would best benefit from the particular expanded services.
- After reviewing the evidence on a number of different models of care, the IOM committee concluded that some of the models with the strongest evidence of success in improving care quality, health-related outcomes, or efficiency have common features that may contribute to their success.
Common components of care coordination programs include the following:
- Essential care tasks (e.g., assess client and develop a care plan)
- Associated coordination activities (e.g., service arranging, psycho-education)
- Common features of interventions to support coordination activities (e.g., standardized protocols and manuals, multidisciplinary teams).
Key aspects of these care coordination interventions are thoroughly integrated in the social work profession’s knowledge, skill, and value base:
1. Patient education
2. Self management
3. Provider education
4. Provider reminders to patients (e.g., regarding appointments, procedures)
5. Audit and feedback
6. Relay of clinical data
7. Organizational change (e.g., adding staff, changing or adding programs)
8. Financial and regulatory incentives (e.g., compensated time for patient education).
Evidence for the Relative Efficacy of Various Care Coordination Programs
- The evidence base for the effectiveness of various care coordination is substantial but not sufficient, and the comparative usefulness of various programs is unknown.
Although there is substantial evidence for the effectiveness of care coordination programs, it currently is not adequate to determine the relative effectiveness of any particular strategy compared to other strategies in improving patient outcomes. Because few intervention studies have clearly identified their component parts, the specific aspects of these interventions that are most effective also are unknown.
The AHRQ’s examination of 75 systematic reviews provides an up-to-date evaluation of the evidence base for care coordination interventions (McDonald et al., 2007). From these reviews, 20 different interventions were identified that had been implemented in multiple settings and that covered 12 clinical populations spread across the settings. Specific components of care coordination were clarified to support the analysis. Overall, this synthesis found that care coordination interventions improved important patient outcomes in different diseases across a broad spectrum of clinical settings.
The AHRQ report (McDonald et al., 2007) included the following overall benefits of care coordination:
- Care coordination strategies for older adults have resulted in reduced numbers of hospital admissions.
- Interventions by multidisciplinary teams have improved continuity of service for severely mentally ill patients, reduced mortality and hospital admissions for heart failure patients, reduced symptoms for terminally ill patients, and reduced mortality and dependency for stroke patients.
- Disease management programs have reduced severity of depression and improved adherence to treatment in patients with mental illness, reduced mortality and hospital admissions in patients with heart failure, and improved glycemic control in patients with diabetes.
- Case management programs have shown reduced rates of rehospitalization among patients with mental health problems, and improved glycemic control among patients with diabetes.
Despite the above findings, unclear definitions and descriptions of the specific components used in most care coordination interventions make it difficult to determine which specific components were affecting the outcomes. Therefore, continued well-designed research in this area is needed.
References
Administration on Aging. (2007). A profile of older Americans: 2007. Retrieved June 15, 2008, from http://www.aoa.gov/prof/Statistics/profile/profiles.asp.
Agostini, J. V., Baker, D. I., & Bogardus, S. T. (2001). Geriatric evaluation and management units for hospitalized patients. In K. G. Shojania, B. W. Duncan, K. M. McDonald, & R. M. Wachter (Eds.), Making health care safer: A critical analysis of patient safety practices. Rockville, MD: Agency for Healthcare Research and Quality. Retrieved June 15, 2008, from http://www.ahrq.gov/clinic/ptsafety/chap30.htm
American Geriatrics Society. (2005). Comprehensive geriatric assessment position statement. Retrieved June 15, 2008, from http://www.americangeriatrics.org/products/positionpapers/cga.shtml
Berkman, B. J., Maramaldi, P., Breon, E. A., & Howe, J. L. (2002). Social work gerontological assessment revisited. Journal of Gerontological Social Work, 40(1/2), 1-14.
Centers for Disease Control and Prevention. (2006). Falls among older adults: Summary of research findings. Retrieved June 15, 2008, from http://www.cdc.gov/ncipc/pub-res/toolkit/SummaryOfFalls.htm.
Coleman, E. A., Smith, J. D., Frank, J. C., Min, S., Parry, C., & Kramer, A. M. (2004). Preparing patients and caregivers to participate in care delivered across settings: The care transitions intervention. Journal of the American Geriatrics Society, 52(11), 1817-1825.
Department of Health and Human Services (DHHS). (1999). The surgeon general’s call to action to prevent suicide. Rockville, MD: Author. Retrieved June 15, 2008, from http://www.surgeongeneral.gov/library/calltoaction/default.htm.
Diwan, S., & Balaswamy, S. (2006). Social work with older adults in heath-care settings, In S. Gelhert & T. Browne (Eds.), Handbook of health social work (pp. 417-447). New York: Wiley.
Gaugler, J. E., Kane, R. A., & Langlois, J. (2000). Assessment of family caregivers of older adults. In R. L. Kane & R. A. Kane (Eds.),Assessing older persons: Measures, meanings, and practical applications (pp. 320 -359). New York: Oxford University Press, Inc.
Geron, S. M. (2006). Comprehensive and multidimensional geriatric assessment. In B. Berkman (Ed.), Handbook of social work in health and aging (pp. 721-727). New York: Oxford University Press.
Institute of Medicine. (2003). Priority areas for national action: transforming health care quality. Washington, DC: National Academies Press. Retrieved August 8, 2008, http://www.nap.edu/openbook.php?isbn=0309085438.
Institute of Medicine. (2007). Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: National Academies Press. Retrieved August 8, 2008, from: http://www.nap.edu/catalog/11993.html.
Institute of Medicine. (2008). Retooling for an aging America: Building the health care workforce. Washington, DC: National Academies Press. Retrieved August 8, 2008, from http://www.iom.edu/?ID=53452.
Kane, R. L., & Kane, R. A. (Eds.). (2000). Assessing older persons: Measures, meanings, and practical applications. New York: Oxford University Press.
Kane, R. A., & Degenholtz, H. (1997). Assessing values and preferences: Should we, can we? Generations: Journal of the American Society on Aging, 21(1), 19-24.
Krause, N. (1995). Negative interaction and satisfaction with social support among older adults. Journal of Gerontology: Psychological Sciences & Social Sciences, 50B(2), P59-P74.
Liu, K., Manton, K. G., & Aragon, C. (2000). Changes in home care use by disabled elderly persons: 1982-1994, Journal of Gerontology: Social Sciences, 55B(4), S245-253.
McDonald, K. M., Sundaram, V., Bravata, D., Lewis, R., Lin, N., Kraft, S, et al. (2007). Care coordination (vol. 7). In K. G. Shojania, K. M. McDonald, R. M. Wachter, & D. K. Owens (Eds.), Closing the quality gap: A critical analysis of quality improvement strategies. AHRQ Publication No. 04(07)-0051-7. Rockville, MD: Agency for Healthcare Research and Quality.
McInnis-Dittrich, K. (2004). Social work with elders: A biopsychosocial approach to assessment and intervention (2nd ed.). Boston: Allyn and Bacon.
National Association of Social Workers. (2005). NASW standards for social work practice in health care settings. Retrieved June 15, 2008, from http://www.socialworkers.org/practice/standards/NASWHealthCareStandards.pdf.
Unger, J. B., McAvay, G., Bruce, M. L., Berkman, L., & Seeman, T. (1999). Variation in the impact of social network characteristics on physical functioning in elderly persons: MacArthur studies of successful aging. Journals of Gerontology: Social Sciences, 54B(5), S245-S251.
Urdangarin, C. F. (2000). Comprehensive geriatric assessment and management. In R. L. Kane & R. A. Kane (Eds.), Assessing older persons: Measures, meanings, and practical applications (pp. 383- 405). New York: Oxford University Press.
Widlitz, M., & Marin, D. B. (2002). Substance abuse in older adults: An overview. Geriatrics, 57(12), 29-34.
Wieland, D, & Hirth, V. (2003). Comprehensive geriatric assessment. Cancer Control, 10(6), 454-462.
Document Date: September 11, 2009
Comprehensive Text Books on Social Work in Health and Aging
- Berkman, B. (Ed.). (2006). Handbook of social work in health and aging. New York: Oxford University Press.
- Gelhert, S., & T. A. Browne (Eds.). (2006). Handbook of health social work, New York: Wiley.
- Kane, R. L., & Kane, R. A. (2000). Assessing older persons: Measures, meaning, and practical applications. New York: Oxford University Press.
- McInnis-Dittrich, K. (2005). Social work with elders: A biopsychosocial approach to assessment and intervention.Boston: Allyn and Bacon.
Document Date: September 11, 2009
Resources for Screening and Biopsychosocial Assessment
Try This: Best Practices in Nursing Care to Older Adults is a series of assessment tools to provide knowledge of best practices in the care of older adults. Includes:
- A general assessment tool (SPICES)
- The Katz Index of Independence in Activities of Daily Living
- The Lawton Instrumental Activities of Daily Living Scale
- Fall Risk Assessment
- Mental Status Assessment of Adults (Mini-Cog)
- The Geriatric Depression Scale (GDS) in English or Spanish
- Modified Caregiver Strain Index Alcohol Use Screening and Assessment
- Elder Mistreatment Assessment in English or Spanish
The Try This resources were developed for a nursing curriculum, but they are quite appropriate for social work students and practitioners.
The videos include a demonstration of the instrument, a discussion of the problem, debriefing, and the implications of the assessment for intervention/ treatment planning after the assessment. The assessments are conducted in a hospital setting, so instructors may need to discuss with their students the influence of context on the process of evaluation.
Resources for Health Care Issues and Ethnic Diversity
The Stanford Geriatric Education Center (SGEC) has many valuable resources that can help faculty who need health-related information about older adults. In particular, this center offers excellent on-line training resources on racial and ethnic diversity that include:
- Curriculum in Ethnogeriatrics
A comprehensive curriculum in the health care of elders from diverse ethnic populations for training in all health care disciplines. It includes five Core Curriculum modules and eleven Ethnic Specific Modules to be used in conjunction with the Core Curriculum.
- Diabetes and Mental Health
Developed as a resource for teaching culturally appropriate care for depression and cognitive loss for elders at high risk for diabetes
- Improving Communication with Elders of Different Cultures
Provides information on how to recognize barriers to communication with elders who are culturally or ethnically different from the health care provider, and some culturally sensitive approaches to elicit information and promote shared decision-making and mutual respect.
- Diversity, Healing, and Healthcare
Contains information about communication and healthcare beliefs related to 15 cultures, 11 religions, and 8 American immigrant cohorts.
Document Date: September 11, 2009
In the context of an ever-changing health care environment, the ability to define social work roles and to be able to advocate for social work programs in the field of health is critical. This assignment is an opportunity to design and present a proposal for a new service or program in a setting of your choosing (i.e., hospital, outpatient, prevention agency, specialty clinic, advocacy). Working in a group of students, you are expected to identify a specific need and population and prepare a 30-minute presentation on this topic. This presentation will have several key components:
Statement of the problem and why services are needed:
- What is the scope of the problem areas
- What is known and how is it relevant to social work practice
Findings from literature review:
- How has the problem been studied or evaluated
- What literature exists about practice approaches and methods
Description of the program or service:
- Introduce your intervention strategy
Presentation of practice issues and plan for implementing the intervention:
- How will you begin
- How will individuals find out about/gain access to your program/service
- How do you anticipate that other health professionals will respond and/or interact with this intervention
Description of resources that would be needed to implement the intervention.
Definition of ways to evaluate the success of your program/service:
- Review of literature to identify ways to evaluate this program/service
- Identify evaluation instruments that you would use
Identify how this relates to other setting and community resources:
- Identify how this relates to other setting and community resources
- Identify relevant government/other agencies to this client population
- Discuss opportunities for partnerships or possible overlap with other programs that will need to be considered.
You are encouraged to interview professionals in the field to get ideas and strategies. This presentation should be targeted to an inter-professional decision-making audience as if you were presenting this to a committee in the setting that you have chosen.
The group is expected to provide the instructor with the following prior to the presentation:
- an outline of the presentation (this may be a print out of PowerPoint slides)
- a copy of all handouts
- a reference list of key literature used in your research of the presentation and any additional resources you found helpful.
All group members are expected to share delivering the presentation to the class. Ten minutes will be allotted following the presentation for questions and discussion. Peer feedback/evaluation will be included although the final grade for this assignment will be given by the instructor.
Note: This assignment was submitted for inclusion in this module by:
Susan Blacker, BSW, MSW, RSW
Adjunct Professor, University of Toronto School of Social Work
Director, Oncology Integration
St. Michael’s Hospital
Toronto, Ontario
Document Date: September 11, 2009
General Chronic Care Information
- Healthy Aging. Contains excellent overviews of issues related to chronic diseases, caregiving, and end-of-life, and provides examples of state programs.
- National Chronic Care Consortium. This organization is dedicated to transforming the delivery of chronic care services. It provides access to advanced knowledge for serving people with multiple, complex chronic conditions. It offers tools and methods for addressing numerous aspects of integration of care for people with serious chronic conditions.
- National Registry of Evidence-Based Programs and Practices. NREPP is a searchable database of interventions for the prevention and treatment of mental and substance use disorders. SAMHSA has developed this resource to help people, agencies, and organizations implement programs and practices in their communities. Also contains information on health care and caregiver support programs.
Disease-Related Information
- Alzheimer's Association. Comprised of a network of chapters, the Alzheimer's Association is one of the largest voluntary organizations studying the disease and providing support to caregivers.
- American Cancer Society. Provides information for patients, families, health care providers. Also has materials in Spanish and some Asian languages.
- American Diabetes Association. News, recipes, tip of the day and resources to help users find local help.
- American Heart Association National Center. Includes risk assessment for heart attack and stroke, resources for advocates and scientists, and a "Heart and Stroke A-Z" guide.
- American Stroke Association. Sponsored by the American Heart Association, this group provides resources for doctors, and patients and their caregivers.
- The Arthritis Foundation. Connects users with events, treatments, research, advocacy, and goods related to arthritis. A zip code search provides information on the nearest Foundation chapter.
- Introduction to Diabetes. From the NIH-sponsored National Institute of Diabetes and Digestive and Kidney Diseases, this page contains tips on how to take care of diabetes and how to prevent some of the serious problems that the disease can cause.
- Foundation for Osteoporosis Research and Education. A nonprofit resource center dedicated to preventing osteoporosis through research and education of the public and medical community. Includes links to an educational video available at the National Osteoporosis Foundation.
- National Stroke Association. A group dedicated to education, services, and community-based activities in prevention, treatment, rehabilitation, and recovery from stroke.
- Parkinson's Disease Foundation. Features news, “ask the expert,” and an email newsletter.
Document Date: September 11, 2009
Download this PowerPoint for Section 2.2 of the Health Resource Review.
Document Date: September 11, 2009
Gunnar Almgren, PhD – University of Washington, School of Social Work
Sadhna Diwan, PhD - San Jose State University, School of Social Work.
Typology of Chronic Illness and Impact on the Family
Synopsis
Chronic illness is a term applied to a broad range of diseases that vary greatly both in their essential characteristics and the ways in which they affect the family system and its adaptive functioning. To understand the most critical ways a chronic disease affects not only the family system as a whole but also the individual family members, one must consider the key characteristics of both the disease and the family system (Rolland, 1994). Rolland developed a typology of chronic diseases that categorizes diseases by a core set of four characteristics-onset, course, outcome, and degree of incapacitation-that are particularly relevant to the adaptive functioning of family systems. The impacts of chronic disease on the family system should be assessed in two essential domains: the family’s instrumental functions as a social unit and the critical components of family functioning. The first domain, the impact of chronic disease, considers how the disease affects the family’s capacity to fulfill its essential purposes: for example, providing material security for its members, providing for their developmental needs, and providing care and support for ill and disabled members. The second domain, the impact of critical components of family functioning, includes family structural and organizational patterns, communication processes, multigenerational patterns and the family life cycle, and family belief systems (Rolland, 1994).
A Typology of Chronic Disease
- Chronic diseases can be categorized according to four key dimensions that have an impact on the family system: onset, course, outcome, and degree of incapacitation (Rolland, 1994).
Disease onset: Onset of disease refers to the time dimension of how different forms of chronic disease are manifested. In particular, families must adapt differently when the onset of a disease is rapid and acute (as in a stroke) as opposed to when it is gradual (as in Alzheimer’s disease).
Disease course: Chronic diseases differ greatly in the extent to which they are progressive, i.e., become worse over time (as in Alzheimer’s disease), or are constant, i.e., remain relatively static or stable (as in osteoarthritis). In addition, some forms of progressive chronic disease entail periods of relative stability interrupted by dramatic setbacks or relapses (as in many cancers), whereas others manifest a highly consistent and relatively predictable course that is either gradual or rapidly downward (as in Type 2 diabetes or cardiac disease).
Disease outcome: Chronic diseases can be crudely characterized as fatal, contributing to a shortened lifespan, or nonfatal in their predictable ultimate outcome. Although many chronic diseases (such as diabetes) may shorten the life span and even be fatal in the long run, such nonfatal diseases offer neither a predictable timeline of demise nor a strong likelihood they will emerge as the principal cause of death (e.g., osteoarthritis). Fatal diseases (as in pancreatic cancer), on the other hand, entail a more direct confrontation with the high likelihood of death, calling for particular adaptive demands by the affected individual and the family system that are a part of the death and dying process.
Degree of incapacitation: Some chronic diseases have few direct or sustained effects on an individual’s functional independence throughout most of their course, whereas other forms of chronic disease entail a significant degree of incapacitation and major adaptive responses by the family system.
- Chronic diseases can be categorized into distinct psychosocial typologies, each with its own set of implications for the adaptation and social functioning of the family system.
For example, an older adult with various forms of fatal cancer may be functionally independent until the final stages of disease despite the dismal prognosis. In contrast, some nonfatal diseases (e.g., Parkinson’s disease), though they may shorten the lifespan, bring with them significant incapacities and ongoing adaptive demands on the family system. As a general point, the distinct psychosocial typology of a given disease is largely a function of the interactions between the four key dimensions of disease identified by Rolland (1994): onset, course, outcome, and degree of incapacitation.
Chronic Illness and the Family System: Domains of Impact
- Chronic disease affects the family system’s instrumental functions as a social unit.
Throughout human history and across all human societies, the family system has organized itself to meet the demands of a set of critical instrumental functions, functions that are essential to both individual family members and society at large.
- First, primary among those functions is the family’s role as an economic unit that provides for the essential material needs of its members: food, shelter, and clothing.
- Second, families function to meet the developmental and emotional needs of individual family members at whatever stages of the life course they happen to be in.
- Although young children, adolescents, young adults, middle-aged adults, and the elderly have different social and emotional demands on the family system, at no stage of the life course does human development unfold wholly and independently outside the family system.
- Finally, the family system functions as the primary care and support system for ill and disabled family members.
Despite the existence of an extensive institutional long-term system of care consisting of nursing homes, rehabilitative facilities, and chronic care hospitals that serve as a substitute for the family system, the vast majority of disabled individuals (both young and old) are cared for by their families (Spector, Fleishman, Pezzin, & Spillman, 2000).
Family Tasks and Responsibilities in Providing Care to Older Persons
A recent report from the Institute of Medicine (2008) reviews the many roles of family members or informal caregivers in the management of health care of older persons.
- Informal caregivers assume many different responsibilities in providing care support for older adults (IOM, 2008).
- They take responsibility for much of the patient’s role with respect to logistics, care management, and medical decision-making. For example, they often schedule medical appointments for older adults, provide transportation, and handle billing questions.
- They assume major responsibility in presenting the patient’s history and listening to the clinicians’ assessments and instructions. They frequently make, or influence, decisions regarding the appropriate course of treatment. They also monitor the older person’s health status.
- Caregivers take on the role of health care provider, providing assistance with the activities of daily living.
- Family members also advocate on the patient’s behalf and to enhance the providers’ understanding of the older adult’s social environment, health conditions, and care preferences.
- Similarly, family members’ understanding of the providers’ treatment recommendations and their ongoing interactions with the patient at home and in the community can influence the patient’s behaviors, treatment adherence, and health.
- Family members often serve as interpreters to health care providers when older adults do not speak English. An estimated 79% of hospitals rely frequently on family and friends to serve as interpreters (Wilson-Stronks & Galvez, 2007). However, due to the potential risk for inaccurate transmission of information several states have developed laws that restrict this practice.
Impact of Chronic Illness on the Family
- A chronic disease can adversely affect the family’s instrumental functions in a variety of ways.
How a disease affects a family system depends on the nature of the disease itself (per the typology of chronic diseases described previously), the convergence of roles the person with the disease fulfills in the family (breadwinner, lover, primary parent to the youngest children, caregiver of an aged parent or spouse), and how the characteristics of the disease interact with the capacity of the affected family members to fulfill their normative family roles. Also, family members who are not the one with the chronic disease may have to adapt their roles in the family significantly to accommodate the caregiving demands imposed by the ill person. For example, the adult daughter of an elderly parent with advancing cancer may feel compelled by the conventions of gender socialization to act as her parent’s primary caregiver despite the detrimental consequences to her career, the family income, and her emotional availability to other family members.
- The impact of chronic disease on critical components of family functioning can be dramatic.
Rolland (1994) identified four components of family functioning that can be affected dramatically by the nature and course of a chronic disease: 1) family structural and organizational patterns, 2) communication processes, 3) multigenerational patterns, and 4) the family life cycle, and family belief systems. The array of chronic disease morphologies, when combined with variations in how families both structure themselves and adapt to disease, pose formidable challenges to the family assessment process. However, delineating the process of assessment by these four components of family functioning enables the clinician to at least gain a firm grasp on how a given disease process has affected a family.
- The structural and organizational patterns of a family system refer to both the structural constellation of the family and the functional dimensions of adaptability, cohesion, and pattern of relationships within the family (Rolland, 1994).
- The family communication component includes the degree of open and direct communication versus latent and constrained communication, patterns of family member inclusiveness, ways of handling risky or painful topics, and family secrets.
- Family multigenerational assessment entails how families have adapted to various kinds of adversity and evolved over time. That is, every disease or crisis that confronts a family is contextualized in a family’s historical experience and acquired patterns of adaptation and ultimately is incorporated into the family’s further evolvement.
- Finally, families have “belief systems” (shared constructions of reality, world views) that both reinforce family identity and enable families to make sense of everyday complexities and crises, including crises that are introduced by the onset and progression of chronic disease.
For example, many families hold to the belief (found in many religious traditions) that the episodes of crisis that accompany the progression of illness represent a “test” of the family’s faith and fortitude. While this belief may enable some families members to “make sense” of the crisis at hand and the losses that may accompany it (e.g., as in the loss of an aging parent’s capacity to speak due to a stroke), for other families it may seem that a new crisis represents a divine reaction to a failure of faith (e.g., “we failed to place mother’s recovery in God’s hands…”). Another belief that is commonly held among families is the belief that “we always stick together and take care of our own.” As noble and as historically true as this might have been, sometimes a new crisis in the progression of a chronic disease provokes divisions among family members (e.g. disagreement among siblings over who should manage a cognitively impaired parent’s finances) and may signal a level of incapacity that the family in fact does not have the resources to respond to (e.g. as in “We always said to Mom we would never allow her to go to a nursing home, how can we break our word to her?”). A social worker’s ability to help a family navigate the crises that accompany the onset and progression of chronic illness often requires some sensitive interrogation into the core family beliefs that families use to define themselves, make sense of losses, and draw upon for sources of resilience and unity.
Application of Rolland’s Model to Understanding Family Influence on Type 2 Diabetes
- Type 2 diabetes provides a particularly useful exemplar of chronic disease and the family
Chesla et al. (2003) applied key aspects of Rolland’s model (family structure and organization, world view, and management of emotions) to a prospective study of family influence on Type 2 diabetes in a multiethnic sample of 113 European American and 74 Latino American patients and their families. Type 2 diabetes provides a particularly useful exemplar of chronic disease and the family because 1) it is increasing in prevalence in the general population, 2) a high proportion of older adults develop Type II diabetes as a part of the aging process, 3) management of Type II diabetes entails often significant adaptation by the patient and as well as the family system, and 4) research suggest that the family context provides important influences over the course and speed of progression of the disease, just as it does in a range of other chronic diseases.
Three domains of family context and their impact on diabetes management were assessed over the course of one year. Disease management includes diabetes self-care, quality of life, emotional well-being, and biological markers of disease status and overall health.
Although several findings with relevance to practice with families were identified, three appear particularly relevant. First, higher levels of unresolved conflict for European American and Latino families were predictive of negative changes in some aspects of disease management. In the case of European American families, conflicts over diabetes disease management contributed poorly regulated eating. Among Latino families, conflicts predicted worse scores on disease specific quality of life measures (Chesla et al., 2003). Second, family organization and structure did not seem especially predictive of disease management for either group. Third, the indicator for family world view appeared to act in radically different ways for Latino families relative to their European American counterparts. For European American families, a more coherent world view predicted positive changes in diabetes disease management, whereas for Latino families higher levels of coherence predicted negative changes in disease management (Chesla et al, 2003). The authors of this study speculated that among Latino American families (as opposed to their European American counterparts), a negatively coherent world view may be more highly correlated with the kind of realism that is needed to manage disease effectively in the face of their relative structural disadvantages.
These findings suggest that social workers should devote primary attention to the context of family conflict, rather than to structural and organizational patterns and, further, that the role of family belief systems in the management of chronic disease may differ significantly across cultures. Both specific attention to the sources of family conflict and pathways to their amelioration, and the ability to understand how family belief systems interact with diseases processes can serve as powerful points of leverage as social workers seek to enhance the disease management capacities of families.
Impact of Family on Health Outcomes of Older Adults
- The IOM (2008) report documents strong evidence that informal caregivers have a profound effect on long-term care processes and outcomes.
- Dementia care outcomes for patients are improved when families are engaged in patient care (Mittelman, Haley, Clay, & Roth, 2006).
- Families enable postponement of institutionalization of the older person (Miller & Weissert, 2000), and are associated with shorter stays in the hospital (Picone, Wilson, & Chou, 2003).
- The converse is also true, that is, that an absence of adequate caregiving is associated with problematic hospital discharges (Procter, Wilcockson, Pearson, & Allgar, 2001) or readmissions (Lotus Shyu, Chen, & Lee, 2004).
- Individuals with few social supports are more likely to have unmet needs in personal care and household tasks (Lima & Allen, 2001) and are also more likely to miss medical appointments and to fail to fill prescriptions (Allen & Mor, 1997).
- A meta-analysis of 122 studies found that patients who received instrumental assistance were 3.6 times more likely to adhere to medical instructions and prescriptions (DiMatteo, 2004). This was twice as effective as emotional support, which was associated with 1.8 times greater likelihood of adherence. The effect of family support varies, however; individuals with close and cohesive families are 3 times more likely to adhere to instructions than those from conflicted families.
Although the importance of family involvement in the process of health care delivery is recognized, there is still little knowledge about which particular attributes of family involvement are efficacious in improving health outcomes (IOM, 2008).
References
Allen, S. M., & Mor. V. (1997). The prevalence and consequences of unmet need. Contrasts between older and younger adults with disability. Medical Care, 35(11), 1132-1148.
Chesla, C. A., Fisher, L., Skaff, M. M., Mullan, J. T., Gilliss, C. L., & Kanter, R. (2003). Family predictors of disease management over one year in Latino and European American patients with type 2 diabetes. Family Process, 42, 375-390.
DiMatteo, M. R. (2004). Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology, 23(2), 207-218.
Institute of Medicine. (2008). Retooling for an aging America. Washington, DC: The National Academies Press. Available at http://www.nap.edu/catalog/12089.html.
Lima, J. C., & Allen, S. M. (2001). Targeting risk for unmet need: Not enough help versus no help at all. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 56B(5), S302- S310.
Lotus Shyu, Y., Chen, M., & Lee, H. (2004). Caregiver's needs as predictors of hospital readmission for the elderly in Taiwan. Social Science & Medicine, 58(7), 1395-1403.
Miller, E. A., & Weissert, W. G. (2000). Predicting elderly people's risk for nursing home placement, hospitalization, functional impairment, and mortality: A synthesis. Medical Care Research and Review, 57(3), 259-297.
Mittelman, M. S., Haley, W. E. Clay, O. J., & Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer Disease. Neurology, 67(9), 1592-1599.
Picone, G., Wilson, R. M., & Chou, S. (2003). Analysis of hospital length of stay and discharge destination using hazard functions with unmeasured heterogeneity. Health Economics, 12(12), 1021-1034.
Procter, S., Wilcockson, J., Pearson, P., & Allgar, V. (2001). Going home from the hospital: The carer/patient dyad. Journal of Advanced Nursing, 35(2), 206-217.
Rolland, J. (1994). Families, illness, and disability: An integrative treatment model. New York: Basic Books.
Spector, W. D., Fleishman, J. A., Pezzin, L. E., & Spillman, B. C. (2000). The characteristics of long-term care users. Rockville, MD: Agency for Health Care Policy and Research.
Wilson-Stronks, A., & E. Galvez. (2007). Hospitals, language, and culture: A snapshot of the nation. Retrieved August 11, 2008, from http://www.jointcommission.org/NR/rdonlyres/E64E5E89-5734-4D1D-BB4D-C4ACD4BF8BD3/0/hlc_paper.pdf.
Document Date: September 11, 2009
Rolland, J. (1994). Families, illness, and disability: An integrative treatment model. New York: Basic Books.
This book, though somewhat dated by contemporary standards, remains available in either new or used editions. Although it is not specifically focused on the aged, both Rolland’s multigenerational framework and the dynamics of chronic disease he illuminates are highly relevant to social work practice with the aged and their families. Rolland applies an ecosystem perspective to the family assessment process that is skillfully integrated with a readily interpretable typology of chronic disease. His book provides remarkably coherent syntheses of the literatures on the family and on the nature of chronic illness from medical anthropology, medical sociology, behavioral medicine, psychology, and social work, and then weaves it all into an incredibly pragmatic framework for clinical practice.As alternatives to acquiring Rolland’s book, the following two articles by Rolland precede the book and explicate Rolland’s conceptual framework of chronic disease and family processes:
- Rolland, J. (1984). Toward a psychosocial typology of chronic and life threatening illness. Family Systems Medicine, 2, 245-263.
- Rolland, J. (1987). Chronic illness and the family life-cycle: A conceptual framework. Family Process, 26, 203-221.
Fisher, L., & Weihs, K. (2000). Can addressing family relationships improve outcomes in chronic disease. Journal of Family Practice, 49, 561-566.
This article is a highly informative review written by researchers affiliated with the National Working Group on Family-Based Interventions on Chronic Disease. The authors identify important mechanisms through which the family’s relational context affects disease management, then describe how particular characteristics of family relationships can function as risk or protective factors for disease management. In addition, major forms of family-based interventions are provided, linked to a review of the findings from selected clinical trials, which in turn are extended to applications for clinical practice. The authors first note two principal mechanisms through which the family context influences the course of chronic disease. The first mechanism is broadly described as the emotional climate, in essence the quality of attachments in the family and the degree of hostility and conflict present and their effect on the physiological disease and stress-response processes in the identified patient. The second mechanism is the family’s capacity to organize itself around the adaptive demands of the disease: e.g., accommodating numerous clinic appointments, dietary restriction, losses in functional capacity, and the difficult role changes for family members that might result. The review of the literature is divided into two segments. The first segment pertains to the identification of family characteristics that function as risk and protective factors in the management of chronic disease. The second segment examines the findings from selected clinical trials of family centered interventions in the context of chronic disease management, specifically psychoeducational approaches, relationship-focused interventions, and more intensive couples or family psychotherapy. Although most of the intervention studies reviewed involved the families of nonelderly patients, many of the findings appear to be relevant to diagnosis and intervention with families at all stages of the life course. Moreover, consistent with Rolland’s framework (1984, 1987, 1994, it appears that the typology of disease is as relevant as the stage of aging or the family life cycle under consideration.
Glasgow, R., Strycker, L., Toobert, D, & Eakin, E. (2000). A social–ecologic approach to assessing support for disease self-management: The chronic illness resources survey. Journal of Behavioral Medicine, 23, 559-583.
In research supported by the Robert Wood Johnson Foundation, Glasgow et al. described the structure, application, and psychometric properties of a social support survey based on a multilevel social-ecological model that was tested on a sample of adults with an array of chronic diseases (mean age, 63; range, 40 to 88 years). Because it interrogates eight distinct levels of psychosocial environmental support (physician and health care team, family and friends, personal actions, neighborhood, community, media and policy, community organizations, and workplace), the survey instrument offers a highly comprehensive approach to the person-environment psychosocial assessment essential to the management of chronic disease. The Chronic Illness Resources Survey (CIRS) has two versions: a 64-item full instrument and 29-item Brief CIRS. The authors described a prospective evaluation with the 123 patients having heart disease, arthritis, diabetes, and/or chronic obstructive pulmonary disease and revealed that the overall instrument and its subscales all met at least acceptable standards for internal consistency, test-retest reliability, and construct validity. Even more impressive, the authors assessed the predictive validity of the subscales in a 4-month prospective evaluation of chronic disease management and uncovered promising results suggesting various ways the scales might be directly applied to patients and families struggling with the management of chronic disease. The CIRS can be reasonably useful as a baseline diagnostic tool to determine whether, and in what areas, family level intervention is indicated, then be used later at different time points to assess whether intervention efforts are being effective in promoting positive change. Both the full and brief versions of the CIRS are provided in an appendix.
Document Date: September 11, 2009
Inez B. is a 68-year-old woman who was initially referred to a community clinic after a fainting episode that occurred during her part-time shift at Wal-Mart. Aside from modest obesity and hypertension, the clinic’s health care team discovered that Inez has Type 2 diabetes, advanced to the point where careful management of her disease, including insulin therapy, is required. In fact, Inez is already showing symptoms of peripheral vascular disease secondary to uncontrolled diabetes. Her primary care physician referred her to the clinic social worker because of significant concerns about her social situation and her ability to manage her disease effectively.
The following information was available from the limited social history in her clinic records: Inez is a naturalized citizen who emigrated from Mexico 23 years earlier along with her husband and three young children. Her command of English is limited, she is functionally illiterate, and she currently relies on her adult children to help her with complex written information. Aside from the limited income Inez brings home from her part-time job, she and her husband have only his Social Security Old Age Insurance benefits. Inez does all the housework and the cooking for her husband and herself and provides meals and day care for three of her grandchildren while their parents are at work.
The following exercise consists of three elements:
1) Using the Typology of Chronic Disease framework shown in Table 1, identify the characteristics of Inez’s diabetes and her hypertensive disease.
[Note to instructor: Students should note that both hypertensive disease and insulin-dependent adult onset diabetes are shown on Table I to fall in the cell designated for diseases that are gradual, progressive, and associated with a shortened life span. The speed of disease progression in both adult onset diabetes and hypertension, as well as their respective effects on a shortened life span, are largely determined by how well the diabetic patient can manage their disease, which in turn is heavily influenced by access to appropriate health care and the support they receive from their family. Several of your students are likely to have someone in their family managing insulin dependent-diabetes, and it often works well to have these students describe what is entailed for the person; this then can be applied to the situation of Inez and her specific challenges.]
2) Investigate the kinds of adaptive demands that diabetes and hypertension place on Inez and her family system. Be as specific as possible regarding each disease.
[Note to instructor: Several of your students will likely have someone in their family managing insulin-dependent diabetes, and it often works well to have these students describe to the class what is entailed for the person managing this disease (e.g., planning every meal and snack, recognizing and balancing the effects of stress and exertion on blood sugar levels and insulin dosing, rigorous and sometimes painful monitoring of blood sugar). This then can be applied to the situation of Inez and her specific challenges as described in her brief social summary. For example, diabetes educational materials are often written with at least a high school level of literacy assumed; thus, even should they be made available in Spanish, Inez ill not necessarily be able to comprehend them. Further, Inez has a very limited income with which to pay for her anti-hypertensive medications, glucose sticks, and insulin. Finally, the early onset of peripheral vascular disease signals the possibility that she will not be able to sustain demanding work that keeps her on her feet for long hours. Health insurance coverage and access to health care are also large issues. In addition, students should think about the role that Inez has fulfilled in the family as the prime caregiver for her husband and children, and the kinds of adaptive demands implied for the family should Inez be supported by her family in managing her disease effectively.]
3) What kinds of questions or areas of exploration should the social worker pursue in the biopsychosocial assessment process?
[Note to instructor: Students should be encouraged to identify the information they have in hand, both about Inez and the nature of her disease processes. This then helps them to identify critical elements of information that they do not know—some of which might be acquired via patient/family interviews and some of which can be gathered from other sources (e.g., disease and disease management information via library resources and the internet). The most critical elements of information pertain to Inez’s experiences with and beliefs about diabetes—in particular her beliefs about disease prognosis and the capacity of the patient to influence the course of the disease. Another line of inquiry pertains to the sources of motivation and capacity that will support Inez’s adaptation to the specific demands entailed in a rigorous regime of disease management. A third line of inquiry pertains to material resources and health care system access. Also, students should be advised that a complete biopsychosocial assessment, ideally, would entail more than one interview, because the patient needs time to absorb information about the disease and the implications for her life to be a more effective informant. Some students might suggest this is unrealistic—which then could be used as a basis for a discussion on tensions between the organization of the health care system and the nature of successful behavioral interventions].
NOTE: The Stanford Geriatric Education Center is a good resource for students to explore the impact of diabetes on mental health among diverse populations. http://sgec.stanford.edu/diabetes_mh.html
Document Date: September 11, 2009
Download this PowerPoint for Section 2.3 of the Health Resource Review.
Document Date: September 11, 2009
Grace Christ, DSW - Columbia University, School of Social Work
Cancer as a Chronic-Life Threatening Condition
Although chronic illnesses in older adults have predictable psychological and social impacts, the specific characteristics of any disease influence the adaptive challenge it presents. To be effective the social work role, interventions, and service delivery models need to be designed and developed to take account of the particular characteristics of an illness and its affect on patients, families, and communities. Such defining characteristics for the biopsychosocial assessment and interventions include, for example:
- The disease prevalence and life threat
- The disease and treatment trajectory over time
- The effects and side effects of required treatments
- The impact on patient functioning in all domains
- Societal attitudes to the disease
- Implications for care coordination.
Presented here is the example of cancer, a disease that has high prevalence in older adults, is life threatening, is increasingly becoming chronic (but may have periods of remission and exacerbation), often requires decision making about the use of complex high technology treatments. Both cancer and its treatment have a broad range of impacts on patient functioning, and only recently has it been viewed as a disease that should be treated in older adults. The use of care coordination models with older adults with cancer is just emerging and has included primarily interdisciplinary team care, patient and caregiver education and support, and care/system navigator programs to improve access and continuity for multiple populations.
Epidemiology: Cancer and Age
Prevalence Overview
- In the United States, almost 60% of new cancers and 70% of deaths from cancer occur in adults over the age of 65 (NCI, 2005)
The burden of cancer is considerable in older adults and as the population ages it will continue to grow. Based on cancer incidence rates and U.S. census department population projections the number of cancer patients 65 years and older will double over the next 30 years and in those 85 years and older it is expected to increase four fold from 2000 to 2050 (Edwards et al., 2002).
The Changing Trajectory of Cancer as a Disease
- Early detection and improved treatments for many different types of cancer have changed our understanding of this group of illnesses from that of a single disease that was often uniformly fatal in a matter of weeks or months to that of a variety of diseases, some of which are curable, almost all of which are treatable.
For many individuals long-term disease-free survival is now possible (IOM, 2006). In the past two decades the 5-year survival rate for the 15 most common cancers has increased from 43% to 64% for men and from 57% to 64% for women (Jemal et al., 2007). With survivors living longer, often with more than one chronic condition, some types of treatable cancer can be seen less as a terminal disease and more as a manageable chronic condition. This new trajectory is especially important for older populations to learn about as they may have perceived a cancer diagnosis as a death sentence given their early life experiences prior to the current advances in cancer control. Despite advances, cancer does remain a group of diseases that represent both acute life-threatening illnesses and serious chronic conditions (Maramaldi & Lee, 2006).
Impact of Cancer on Older Adults
- Older people bear a disproportionate cancer burden in the United States.
As a result, cancer is now classified as a disease of older adults (Cohen, 2003; Deimling, Kahana, Bosmon, & Schaefer, 2002; Ershler, 2003).
1) They are at higher risk of a diagnosis of most cancers. Cancer rates are 10 times higher for people age 65 and older.
2) They have a higher rate of cancer deaths.
3) They are more likely to have concomitant health problems associated with advancing age.
4) Sixty percent of cancer survivors are over the age of 65.
Even if diagnosed at an earlier age, they are now living as survivors into their older years. Approximately 14% of the 10.5 million estimated cancer survivors were diagnosed over 20 years ago. That often means they are living with the late effects of treatments that were more radical and more toxic than the treatments of today (IOM, 2007b).
- The most common sites of cancer differ in men and women.
The five most commonly diagnosed cancers in women age 65 and older are cancer of the lung, breast, colon, rectum, and pancreas. In older men the five most common cancer sites are lungs, prostate, colon, rectum, and pancreas (Maramaldi & Lee, 2006; Sacks & Abrahm, 2003).
- Median ages of cancer patients at diagnosis are above 65 for most types of cancer.
Table 1 shows the median ages of patients at diagnosis for both sexes. With the exception of non-Hodgkin’s lymphoma (NHL), the median age in men for these common cancer sites is uniformly above the age of 65, and in some cases above 70 years. For women the situation is similar.
- The proportion of cancers in all sites in the 65 and older population is 56%.
As shown in Figure 1, for several tumor types the proportions are even higher.
- Age-adjusted cancer incidence and death rates show that rates are significantly higher among older adults than among younger ones.
Figure 2 shows age-adjusted incidence and death rates for all cancer sites combined. The age-adjusted incidence per 100,000 population is 10 times greater for individuals 65 and older compared to the rate for younger persons. And, in all cancer sites age-adjusted death rates are 17 times greater for this age than for those aged less than 65. This is important because for many years health care researchers/providers believed that older people did not die of cancer. The presumption was that they would die from other co-morbid diseases and that cancer progressed more slowly than those diseases did. Therefore, both screening and treatment were often not recommended. As people began to live longer, however, it became clear that they can live long enough to die from cancer, and over the past decade new guidelines have been developed such that more screening and treatment now occurs in older people.
Factors Affecting the Impact of Cancers in Older Age
- Little is known about cancer in older adults.
It is important to recognize that despite the high incidence of cancer in older adults little is known about the intersection of cancer and aging (Marimaldi & Lee, 2006). Interaction between these two specialty areas, gerontology and oncology, has been quite limited. In a June 2001 a workshop convened by the National Institute on Aging and the National Cancer Institute (NCI) expert participants acknowledged that geriatric and cancer research have developed separately with little interaction. A cross-institute initiative was subsequently implemented with the goal of bringing aging and cancer research together. In 2006, an Institute of Medicine workshop on Cancer in Elderly People presented information documenting gradual improvements in survival of older people with cancer, although such improvements lag far behind those made in pediatric oncology, until recently another age group for which cancer was insufficiently studied (IOM, 2007b). Yet, older cancer patients still do not receive the appropriate standard of care, in spite of near universal health coverage of this population under Medicare. Specifically, older patients continue to be underrepresented in clinical trials. Referrals to hospice occur late in the course of this illness. Because of the outpatient locus of most cancer treatment and the increasing complexity of care over longer periods of time, an increasingly high burden falls on the families who care for older adults (IOM, 2007b).
- Cancer treatment is arduous and generally requires some combination of surgery, radiation, or chemotherapy for months, sometimes years.
Even when treatment is completed and no cancer remains, there are frequently permanent, and serious residua of cancer and/or of chemotherapy, radiation, hormone therapy, surgery, and other treatments. These can permanently impair cardiac, neurological, kidney, lung, and other body functioning, necessitating ongoing monitoring of cancer survivors’ health. Cancer survivors report a broad range of functional limitations as well as mental health problems, such as depression and anxiety disorders. Regardless of age, an individual with a cancer history must be diligently monitored for recurrence of a previous cancer or the occurrence of a new form of cancer.
Older cancer patients may require a longer period of rehabilitation from treatment and experience more severe or longer-lasting treatment side effects. There may be setbacks after initial treatment. Restoration to pre-illness functioning may not be possible. The same physiological processes that slow down the progression of cancer in older adults may also delay the recovery process (Balducci & Yates, 2000).
Critical Challenges of Cancer to the Older Adult Population
Three critical challenges for older adults with cancer are concurrent diseases with the cancer diagnosis, the lack of a workforce trained to treat older adults with cancer, and the increasing need for family caregivers for older adults.
First Challenge: Cancer and Co-morbidities:
- Common co-morbidities: With aging, physiological changes and susceptibility to geriatric syndromes (incontinence and falls, among others) increase, as do chronic disease, susceptibility to infections, and other co-morbidities.
The major diseases and conditions common to older persons include heart-related conditions, diabetes, hypertension, chronic obstructive pulmonary diseases (COPD), cerebrovascular diseases, urinary tract problems, and subcategories of each of these. Using these conditions, one study of breast cancer patients found that the number of co-morbidities ranged from 0-13 per patient and that the numbers increased with age. (Yancik et al., 2007, as cited in Institute of Medicine, 2007b).
- Interaction of cancer and co-morbidities: Research is just beginning to assess and treat the interaction of many co-occurring conditions and diseases of older adults.
Co-occurring conditions limit the ability to determine prognosis, minimize treatment options, and increase the risk of death from multiple causes. Co-morbidity is frequently assessed in the context of an index disease (e.g., a newly diagnosed cancer). Some researchers/practitioners have suggested that focusing only on the index disease is insufficiently comprehensive to be used in a primary care setting. Alternatively, they encourage an approach that would define co-morbidity as the total burden of biological dysfunction. A recent article that contributes to developing the research structure in this area proposes that co-morbidity be assessed in a way parallel to the World Health Organization’s (WHO, n.d.) International Classification of Functioning, Disability, and Health. Functioning of each system is assessed on a continuum from high-functioning, protective zones to early subclinical changes, to overt disease of increasing severity, to end-stage disease. It does not rely solely on clinically diagnosed diseases and explores the full range of performance in each system (positive and negative) instead of measuring only negative aspects.
Both researchers and practitioners are advocating greater attention to the research interface of aging and cancer treatment. Further they recommend stronger ties between geriatric medicine and medical oncology to meet the current and future needs of the older age segment of the population (IOM, 2007b; Maramaldi & Lee, 2006).
Second Challenge: The Uninformed Workforce
- The lack of an educated workforce with sufficient understanding of the impact and effects of cancer in older adults is a major challenge.
For example, when deciding what screening and treatment to offer geriatric patients, professionals still focus on the particular age of the individual rather than considering their functional level, co-occurring conditions, and symptoms. Until recently individuals over 70 years of age were routinely restricted from participation in clinical trials because it was believed that none could tolerate aggressive treatments or would live long enough to benefit from them. In fact, older adults are quite heterogeneous in relation to their physical condition, depending upon their functional status, co-morbidities, and symptoms. Therefore, specific age is not sufficient to rule in or out many treatments. Their limited representation in clinical trials makes it difficult to predict older adults’ reaction to newer treatments. What are the potential risks in terms of morbidity and mortality, and what are the potential benefits in relation to longer active life time? Many patients ask this question. Often older adults are not offered screening and treatment that would improve their survival and quality of life, and conversely, they may receive treatments in the advanced stages of an illness that are futile and prolong suffering (IOM, 2007b). Providing a better informed workforce that understands how to assess strengths and protective factors as well as co-morbidities and that appreciates the continuing expansion of active life time in older adults is a current challenge.
Ageism and stereotyping of older adults as “having lived long enough” or being unable to tolerate the burden of treatment, or no longer needing cancer screening because they will die of another disease before the cancer reaches a fatal stage are attitudes that also contribute to the failure to meet the correct standard of care for older adults in many situations. Contrary to earlier notions that older adults would not die of their cancer illness, but would die of organ failure first, current data document a high mortality rate from cancer among this age group.
Third Challenge: Understanding the Family and Community Role as Caregivers
- Developments in health care have shifted the focus of care to the family/community.
The trend in U.S. health care towards “de-hospitalization,” in combination with advances in cancer treatment makes it possible for many elderly cancer patients to be managed on an outpatient basis and remain in the community while in treatment.
Diagnostic testing, surgical treatments, complex chemotherapies, and radiation treatments previously performed on an inpatient basis are increasingly administered in physicians offices or outpatient treatment facilities.
We have not often thought of cancer as a long-term caregiving situation in comparison with, for example, the care of patients with dementia. However, with medical advances the disease progression can now extend over many years resulting in increasing needs for family care. Consider the length of time from initial diagnosis through therapy, potential progression, possible recurrence, perhaps even a second cancer, and then palliative and end-of-life care. With a second cancer or late recurrence, family members report already being involved for 4.6 years on average. (Cannuscio et al., 2002; Hayman et al., 2001). So, caregiving can go on for a considerable period of time, and as survival time lengthens to 15 or 20 years, caregiving also stretches out for many years.
- Economic value of family caregiving: Family care across diseases makes a major economic contribution to health care.
In 2004, calculated at $9.92 per hour, the value of family care was estimated to be $306 billion dollars (Hayman et al., 2001; Rabow, Hauser, & Adams, 2004). This is substantially more than we are currently spending on nursing home care or other professional services provided in home care. It is a major contribution and a major resource to the health-care system.
- Family involvement: Family are involved in different ways at different stages of the disease process.
Families play different roles in helping patients at different stages of the illness process and have varying abilities and skills for fulfilling these roles. Different judgments and different expectations of families occur during diagnostic phases, treatment phases, maintenance phases, rehabilitation phases, recurrence and metastasis, and palliative care at the end of life. The range of tasks they may have to fulfill in caring for the patient with cancer is quite broad and demands considerable skill and knowledge. These tasks include:
a. medication dispensing and monitoring
b. symptom management
c. monitoring of side effects and adverse events
d. meal preparation and nutritional balance
e. care decisions and problem solving
f. skin care and infection control
g. management of highly technical equipment
h. management of medical procedures such as catheters and wound care
i. bill paying
j. transportation and errands
k. advocacy with health professionals and within the health care system.
The general roles and functions assumed by informal caregivers are shown in Table 2.
- Caregiver stress in cancer is related to the relationship with the patient, the caregiver’s own health status, and specifics of each situation.
a. Relationship to patient: Adult children caregivers experience distress and anxiety related to role change (from taking care to giving care) and task overload with multiple role demands from their work and family life. Older spouses, on the other hand suffer from role changes in the relationship, the loss of support, and anticipation of future loss and change.
b. Caregiver illness and depression: Disabilities and health and mental health conditions of caregivers affect their caregiving capacity.
c. Specifics of the caregiving situation: Research shows that it is not so much the amount of physical care that is the stress; it is the transitioning from more care to less care or less to more. Also the number and severity of the patient’s symptoms create varying stress for the caregiver, especially the management of pain and fatigue. The experience of caring for a person with advanced disease and terminal illness is a time of high stress for everyone involved (Greenberg, Seltzer, & Brewer, 2006).
- Research findings on patient and caregiver stress: Studies show that about one third of caregivers of cancer patients are highly stressed and one third are clinically depressed.
Importantly, studies show that caregiver stress can be very high up to 18 months after care is completed. Caregivers describe being distressed by fear of the future, worrying about the patient’s death, problems of managing pain and fatigue, and in older adult spouses, feeling the absence of respite assistance. They are also distressed by conflicts with the patient and inconsistency among providers, by the hours of care, and the level of vigilance required (Cameron, Franche, Cheung, & Stewart, 2002; Greenberg et al., 2006; Rabow et al., 2004; Schulz, Tompkins, Wood, & Decker, 1987).
Studies have documented a variety of emotional consequences of caregiving for the older cancer patient, including increased levels of depression and anxiety, helplessness hopelessness, emotional exhaustion, low morale, distress, feelings of isolation, guilt, and anger. The emotional distress centers around helplessness, loss of control, insecurity about the course of illness, and the fear of losing the family member. The physical, psychological, and economic impact of caregiving is substantial (Hauser & Kramer, 2004). Schultz and colleagues (2001) showed that older spousal caregivers had a mortality risk that was 63% higher than non caregiver controls and had an increased number of physical symptoms. Patients and caregivers also have an impact on each other. Patients who lose their caregiver have higher mortality rates and caregivers have more chronic illnesses and increased mortality when they become bereaved (Hauser & Kramer, 2004; Schulz & Beach, 1999; Schulz et al., 2001)
An overview of current research on the stresses of older adult cancer patients reported few studies that also included the specifics on impairments among relatives of older cancer patients; however, the authors highlighted the following (Kotkamp-Mothes, Slawinsky, Hindermann, & Strauss, 2005):
1. Age-related impairments in the healthy partner add considerable stress and limit their caregiving capacity.
2. A cancer diagnosis disrupts continuity of relationships and requires change in future plans.
3. Older adults have already experienced losses that may increase their fear of loss.
4. The older caregiver is stressed by the physical demands of caregiving.
5. Positive experiences of caregiving are reported to include an increase in self-esteem, the experience of competence, positive feedback from patients and other social partners, existential factors, and improved family relationships(Koop & Strang, 2003; Nijboer, Tempelaar, Sanderman, Triemstra, & van den Bos, 1998).
- Caregiver interventions: Interventions are not as well developed for families caring for members with cancer as they are for members with other diseases, such as dementia.
Interventions have been slower to be developed for families caring for members with cancer than for those caring for members with dementia, where the cognitive impairment creates disruptive behaviors and an obvious urgent and demanding role for caregivers. Another difference is that in families with cancer patients, changes in role and in daily activities start immediately after identification of the cancer, whereas changes in cognitively impaired patients develop gradually. Diagnostic procedures and treatments for cancer can be arduous and have multiple reactions and side effects. The predominant responses of relatives of cancer patients are reported to be anxiety and unassertiveness, depressive reactions, hopelessness, feelings of guilt and psychosomatic symptoms such as sleep disorder, gastrointestinal disorders, headache, and fatigue (Raveis, 2007).
Families are rarely included in the development of a care plan with cancer patients, and they are often given very little guidance, counseling or direction about what to do and the range of expectations. Emerging interventions are aimed at improving the direction and communication between the physician and other members of the interdisciplinary team through family conferencing (Rabow et al., 2004). Psychoeducation, coping skills training, and multidisciplinary interventions have shown some effectiveness with families of older cancer patients with advanced illness. (Greenberg et al., 2006; McMillan et al., 2006; Rummans et al., 2008).
Social Work Role in Response to Biopsychosocial Needs:
Screening and Assessment
- Psychological and social problems are accentuated in persons with cancer.
Older adults bring strengths of life experience and established coping patterns to the event of a cancer diagnosis. While social workers validate and build on these strengths, they must also recognize the special needs of older adults with cancer. They may require different kinds of help with understanding and processing the diagnosis and complex treatment options offered to them. Explaining the opportunities for remission and the risks of complications from the treatment itself can create difficult decision challenges. Age cohort and cultural differences complicate understanding of the situation. The functional level of elderly people may be impaired by the total burden of chronic conditions they have been living with in addition to a cancer illness. The treatments may be more difficult for their bodies to accommodate. Emotionally they may be exhausted by recent losses of family and peers and their own functional challenges. As a consequence the elder’s social network is often strained and unable to provide the physical and emotional support they need for cancer treatment. The major caregiving challenges for families of older adults are described above.
Both psychological and social problems are accentuated with cancer because of the arduous treatment procedures used to achieve control or cure of the disease, including multiple surgeries, radiation, and a broad range of chemotherapies. These problems are also exacerbated by late effects of treatment and the long period of surveillance to detect recurrence or metastasis.
Psychosocial health needs vary by the type of cancer, the time since diagnosis, degree of functional and role impairment, the amount of pain and discomfort, and the prognosis. Physical stresses include degree of impairment and disability related to disease or treatment, fatigue, and pain. Psychological distress can include depression, anxiety, guilt, loss of control, anger, sadness, confusion, and fear. Patients may experience mood disturbances, fear of recurrence, and concerns about body image.
Relational concerns of patients include distress about the impact their illness is having on their family, their role changes within family relationships, and changes in sexual function and intimacy. They may have feelings of isolation, loneliness, and diminished self-esteem. Older adults are found to have special vulnerability to loss of self-esteem related to functional impairments and loss of autonomy. As noted previously their combined burden of chronic illnesses in addition to cancer may be quite high. Because of the rigorous treatments, side effects of treatments, fears of recurrence, and constant monitoring, families and support networks can experience severe strain over time.
Patients also experience spiritual and existential concerns. While cancer in many situations can be managed as a chronic illness today, it is life-threatening and older adults may have experienced the deaths of other from this disease. Therefore, they confront fears of death and a dying process that includes uncomfortable symptoms and pain. They may ponder the meaning of their illness, their suffering, their relationship to God, and their possible death.
Socially patients are stressed by the arduous treatment procedures used to achieve control or cure of the disease. The long period of treatment and rehabilitation and continuing surveillance can also exhaust insurance and require significant out-of-pocket expenses. It may cause the loss of employment for patients or severely impede functioning and imperil family finances.
Obstacles to managing psychosocial stressors include lack of information, insufficient logistical resources, lack of transportation, strained social support, and inattention and lack of support from the health care system. Established approaches to informing and educating patients and caregivers may not be effective with older adults. Specifically they may not have access to internet resources of other cohorts, or be able to process information given in group format. Their understanding of the potential effectiveness of current treatments may be outdated and based on earlier life experiences.
Table 3 presents seven domains of biopsychosocial health needs assessed by social workers and the psychosocial health services social workers use to meet these needs for cancer patients and their families. The domains include:
- Understanding illness, treatments and services
- Coping with emotions surrounding the illness and treatment
- Managing illness and health
- Behavioral change to minimize disease impact
- Material and logistical resource needs
- Managing disruptions in work, school, and family life
- Financial assistance
Social Work Role in Coordinated Care
- Services used to address biopsychosocial health needs include individual and group approaches as well as complex models of service delivery and coordinated care.
Fewer coordinated care approaches have been evaluated with cancer patients than with other diseases, and even fewer have focused explicitly on older adults with cancer. Until recently many questioned whether cancer patients’ behaviors could have any impact on the progression of their illness. A recent IOM report challenged that assumption and recommended that more patient self-management approaches be used to lengthen and improve the quality of life of cancer patients as they are helped to access information and services in a more timely and effective way (IOM, 2007a). Care coordination approaches with some evidence base with cancer patients have included improving interdisciplinary communication; screening to identify patients with high distress and unmet needs; implementing case management, on-site collocation, and clinical integration of services (e.g., mental health and primary care); developing a broad range of information and education approaches that link patients with available services and teach problem-solving skills. After reviewing the evidence base for these models for cancer patients, the authors of the IOM consensus report adopted the following standard of care that they believed was warranted by the majority of study findings.
“All cancer care should ensure the provision of appropriate psychosocial health services by:
- Facilitating effective communication between patients and care providers.
- Identifying each patient’s psychosocial health needs.
- Designing and implementing a plan that:
- Links the patient with needed psychosocial services.
- Coordinates biomedical and psychosocial care.
- Engages and supports patients in managing their illness and health.
- Systematically following up on, reevaluating, and adjusting plans.” (IOM, 2007a)
Psychosocial screening and patient navigator programs are two elements of care coordination that have particular importance to the social work role, although social work is involved in implementing almost all care models with this patient population. These programs present excellent opportunities for social workers to demonstrate their knowledge and skill base in assessment, communication, and problem solving in order to improve patient/family satisfaction, quality, and quantity of life within larger health care systems. An example presented here is a model that is currently supported for study by both the National Cancer Institute and the American Cancer Society.
Psychosocial Screening
- A broad range of screening approaches to identify unmet psychosocial service needs have been described in the literature. Few, however, have been studied in clinical trials.
The available instruments cover a broad range of needs in multiple domains. More research is recommended to clarify reliable and valid measures with minimal patient/family burden (IOM, 2007a). No guidance currently exists to clarify which tools should be used for different types of patients seen in various clinical settings. Psychosocial screening instruments must address a broad range of problems patients encounter, beyond assessing for depression and anxiety (Wen & Gustafson, 2004). For example, one such approach recommended by National Comprehensive Centers Network (NCCN) and reported to be used by three cancer centers, includes both a distress thermometer and a problem list. The distress thermometer is a visual analogue scale displayed on a picture of a thermometer and used to screen for any type of psychological distress. Individuals are instructed to circle the number (from zero [no distress] to 10 [extreme distress]) that best describes their experience over the past week (NCCN, 2006). This assessment takes the patient less than a minute and the results are concordant with other more extensive and time consuming measures of psychological distress: e.g., the Brief Symptom Inventory (BSI) and the Hospital Anxiety and Depression Scale (HADS) (Jacobsen et al., 2005; Zabora, 1998). In guidelines issued by the NCCN, a 35-item Problem List provided on the same page as the thermometer covers a range of psychosocial problems (e.g., financial, emotional, work-related, spiritual, family, physical symptoms). The list does not include inquiries about behaviors that could interfere with illness management education such as smoking, alcohol or drug use, exercise, diet, or cognitive problems. Three cancer centers report having used this approach (Jacobsen & Ransom, 2007).
Care/System Navigators
- Use of care/system navigators, as well as individual patient advocates, is similar to case management and may also help link patients to needed psychosocial services.
These programs in cancer care were developed initially to help low-income patients participate in screening for the detection of cancer and to obtain diagnostic and treatment services when indicated. The concept and implementation of such programs has developed over the past decade (IOM, 2007a).
Initially, patient navigators were local community residents without professional credentials, but more recently nurses and social workers have filled the navigator role because of the complexity of cancer treatment approaches. Some of these programs include patient education and patient advocacy roles in addition to helping patients overcome barriers to receiving effective services (Dohan & Schrag, 2005).
Evidence to date for the effectiveness of patient navigator programs has documented their ability to accrue more patients for cancer screening. One of the few randomized trials of this type of program (Jandorf, Gutierrez, Lopez, Christie, & Itzkowitz, 2005) found that patient navigators increased the prevalence of screening for colorectal cancer. Other studies suggest that such programs increase screening rates and may increase the proportion of patients detected with early-stage disease (Dohan & Schrag, 2005). Patient navigators are found to increase patients’ ability to overcome logistic and attitudinal barriers to obtaining screening. Their role in helping patients after diagnosis is less clear. A recent randomized trial evaluating the impact of a patient navigation program on follow-through with diagnosis among women with abnormal mammograms found that the intervention significantly increased the percentage of women achieving diagnostic resolution (Ell, Vourlekis, Lee, & Bin, 2007).
These programs appear to aid in engaging low-income patients to participate in cancer screening and diagnosis. Studies of their broader application in linking a diverse population to appropriate cancer services are currently receiving considerable research support. How they differ from more traditional case management functions remains uncertain. The American Cancer Society (ACS) and NCI have both launched major initiatives to implement and evaluate patient navigator programs. The ACS program places trained ACS staff in selected health care facilities to provide patients and families with personalized and reliable information about the disease, referral to ACS resources, and timely follow-up. NCI has launched a Patient Navigation Research Program to develop interventions to reduce the time required for delivery of the standard of care services in cancer diagnosis, and treatment after an abnormal finding. Patient navigators in this program will help patients and their families throughout the period of care by, for example, arranging various forms of financial support, scheduling transportation to appointments, and organizing child care during appointments. NCI and ACS are working together to develop evaluations of these programs.
Critique and Future Directions of System Responses to Cancer Patients’ Psychosocial Needs
- A critique of the health systems response to cancer patients’ psychosocial needs must include a call to action.
Defining action steps: Action steps from a recent IOM (year 2007a) consensus panel are listed under resources in the 10-point action plan noted below. The participants, including several social workers, expressed frustration with the lack of implementation of previous reports and recommendations for integrating psychosocial and medical services that would improve quality of life of patient and family survivors of this complex disease and treatment process. Although people are able to live longer with this often chronic disease and in some situations are cured, they are struggling to cope with the challenges of later cancers, later affects of the treatments, and a health care system that is fragmented and often unresponsive to their human needs. The consensus panel report recommended a new standard for cancer care, a standard that incorporates acknowledgement, treatment, and management of psychosocial (social work) problems.
They identified a range of psychosocial needs of cancer patients from information about their therapies and the potential physical side effects, to treatment for depression, stress, or other mental and emotional conditions; assistance with daily activities that they can no longer perform independently; and assistance with transportation, prosthetics, medications, and other supplies they cannot afford or to which they do not have ready access. These specific needs encompassed seven domains of psychosocial need as presented above in Table 3.
Psychosocial health services are defined as “psychological and social services and interventions that enable patients, their families, and health care providers to optimize biomedical health care and to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better health” (p.6). The panel found that while cancer therapies save and prolong many lives, they and the tumors they target can exact a debilitating toll on patients’ mental and emotional well being and cause health problems that are not dealt with during oncology treatment.
Neglect of psychosocial services: Issues and evidence of system neglect of psychosocial services included the following:
- Twenty-eight percent of families affected by cancer say their doctors paid no attention to factors beyond direct medical care.
- A third of oncologists say they do not screen patients for psychological distress—and those who do often use unreliable methods.
- Only 3 of the world’s 20 leading cancer centers routinely screen all patients for psychological and social distress.
- Many of the recommendations that have been made over the years calling for more attention to the psychosocial concerns of cancer patients and their families have not been acted upon.
- Both cancer survivors and their caregivers report that their providers failed to understand their psychosocial needs and to recognize and adequately address depression and other symptoms of stress.
- Their providers also appeared to be unaware of available resources that could offer support; at least they did not make any referrals.
- Providers generally did not consider psychosocial support to be an integral part of quality care for the oncology patient.
Other barriers to addressing psychosocial care needs included the following:
- Insurance issues and other financial barriers
- Lack of awareness of community resources
- Social stigma associated with mental illness
- Inadequate psychosocial screening and assessment tools
- Limited access to psychosocial services
- Education and training of the health care workforce
- Shortages and misdistributions of health personnel
- Nature of the payment environment for providers
Future of Cancer Care: A Ten-Point Plan to Achieve Higher Care Standards
The IOM panel (2007a) participants developed a ten-point plan for how to achieve a higher standard of care:
- Standard care should include a plan to link patients with psychosocial services, coordinate medical and psychosocial care, support patients in managing their illness, and conduct follow-up evaluations of patients to ensure that the plan is working.
- Cancer doctors should make sure every one of their patients receives psychosocial care.
- Patient education and advocacy groups should educate patients and families about the kinds of psychosocial care they should expect.
- The NCI, the CMS, and the AHRQ should conduct large-scale demonstrations and evaluations of model psychosocial care programs.
- Insurers – including Medicare/Medicaid—should “fully support” psychosocial health services.
- NCI, CMS, and AHRQ should fund research on how best to evaluate psychosocial cancer care.
- Medical groups, including licensing and accreditation boards, should require providers to be competent in delivering psychosocial health care.
- The National Institutes of Health (NIH) should develop a standard language for describing psychosocial interventions in order to promote research and quality measurement.
- Organizations funding cancer research should promote studies of how to improve psychosocial health care.
- The NCI should make regular reports on progress in delivering psychosocial care to cancer patients.
Summary
Due to medical advances over the last four decades cancer has become a chronic, though still life threatening, illness for many individuals including older adults. While previously cancer often went untreated in elders since it was believed they would die of other conditions before their cancer advanced to end-stage, that is no longer a valid assumption according to mortality statistics. The social work role and function in cancer has therefore expanded and changed from helping people dealing with dying from their disease to a greater emphasis on helping individuals get appropriate treatment and live with a disease that in many situations can be controlled if not cured. The treatment of cancer in older adults is complex because of co-existing illnesses and conditions, the nature of the treatment, and individual frailty. There is also insufficient research on cancer treatment in older adults that can guide treatment decisions and predict outcomes. Older patient and family needs are often psychosocial in nature, requiring effective care coordination and supportive interventions to maintain an acceptable quality of life. As a consequence, there is a newly recognized need for the development of comprehensive disease management programs for older adults with cancer. Providers acknowledge that they have been slow to incorporate these approaches within the cancer protocols of treatment centers and hospitals. Social workers by virtue of their professional training and expertise are well positioned to use the findings from needs assessment and interventions with older adults to take leadership in developing social work care coordination models that can address the biopsychosocial needs of patients more fully. Specific ways social workers can address some of these needs include the following:
- Be alert to and participate in the development of approaches such as Patient or Care Navigator programs, and advocate for their development in tandem with social work intervention strategies for coordination of care in health facilities and in nontraditional settings that may connect with underserved populations (e.g., churches, community centers, and libraries).
- Develop better methods of screening for distress and unmet psychosocial needs of older adult cancer patients and their families including assessment of functional impairment, pain, depression and anxiety, and caregiver burden. This information may help to meet the new standard of care for psychosocial services to identify each individual’s psychosocial health needs. It may also contribute to the development of comprehensive care coordination programs.
- Provide outreach to patients and families during transitions in care, as important psychosocial follow-up points to assure adaptation to the next illness phase. This would facilitate meeting the new standard of care for systematically following up on, reevaluating, and adjusting plans.
- Identify barriers and impediments to education of older adults around the disease and its treatment. Facilitate the development of effective patient and family education and the availability of psychosocial support services within the institution and the community.
- Assist with patient and family communication with the medical team around treatment and goals of care, facilitating a better understanding of the needs of older adults, including their religious, cultural, and cohort specific values and preferences. This addresses the new standard of care to coordinate biomedical and psychosocial care.
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Document Date: September 11, 2009
- Loscalzo, M., & Brintzenhofeszoc, K. (1998). Brief crisis counseling. In J. Holland (Ed.), Psycho-oncology (pp. 662-675). New York: Oxford University Press.
This chapter presents the impact of cancer along the disease continuum of care for the patient. It is an excellent teaching tool for helping students to conceptualize how crises may differ at different points in the illness trajectory. The table containing a description of the meaning of these crises for the patient and for the family is particularly useful.
- Maramaldi, P., & Lee, J. (2006). Older adults with cancer. In B. Berkman (Ed.), Handbook of social work in health and aging (pp. 7-18). New York: Oxford University Press.
This chapter provides an overview of the most common cancers in older adults, their treatment, prognoses, and functional challenges for both the patient and the caregiver. It highlights the fact that older adults bear a disproportionate cancer burden in the U.S. Importantly the authors also outline the social work role in providing effective intervention.
- Yancik, R., Wesley, M., & Ries, L. (2001). Effect of age and comorbidity in postmenopausal breast cancer patients aged 55 years and older. Journal of the American Medical Association, 285(7), 885-892.
Because two thirds of all newly diagnosed female breast cancer patients are postmenopausal or over 55 years of age, it is an important cancer for health social workers to be informed about when they are involved with this age group. In fact the peak incidence occurs in women over the age of 70 years. The author uses cancer to illustrate how a chronic disease in older adults is often complicated by co-morbid conditions; limiting diagnostic tests and examinations and narrowing treatment choices for the “index” illness. The number and severity of co-morbid conditions increases over time and includes those such as hypertension, arthritis, high severity heart disease, previous malignancy, stroke/TIA, diabetes, and COPD. The authors advocate that aging and co-morbidity be incorporated into the mainstream of breast cancer clinical research and clinical trials in order to evaluate cancer treatment options for older women and develop more appropriate and evidence-based criteria for breast treatment decisions in this population.
- Raveis, V. (2007). The challenges and issues confronting family caregivers to elderly cancer patients. In S. Carmel, C. Morse, & F. Torres-Gil (Eds.), Lessons on aging from three nations, Volume II: The art of caring for older adults (pp. 85-97). Amityville, NY: Baywood Publishing.
This article is a comprehensive and evidence-based review of the many stresses on older caregivers of cancer patients. In great detail and with helpful examples and illustrations the author discusses the complex psychosocial challenges caregivers confront at diagnosis and treatment and during survivorship. She thoroughly reviews the high costs of cancer caregiving including “…restrictions on occupational, social, and leisure activities; a loss of privacy; financial burdens; conflicts with well family members; physical strain; and chronic fatigue” (p. ?) that often result in adverse psychological and physical conditions. She also thoroughly explores the impact of the life stage on the caregiver including the spouse, but also older daughters. She joins the chorus of voices urging greater research and programmatic attention to understanding the multiple interconnected issues families encounter while caring for an elderly relative with cancer. Her detailed description of the factors affecting their experience provides a clear understanding of just how challenging it is do develop effective interventions.
- Kotkamp-Mothes, N., Slawinsky, D., Hindermann, S., & Strauss, B. (2005). Coping and psychological well being in families of elderly cancer patients. Oncology Hematology, 55, 213-229.
This article presents a thorough review of research findings and suggests directions for future studies on elderly cancer patients and the consequences of their disease for their partners and families. The authors are from Germany and extend their review to studies conducted in Europe, North America, and other continents. and European studies. Studies are reviewed as they relate to five different areas of family functioning: 1) the family and the etiology of the disease, 2) the family as a source of support, 3) the family as a second order patient, since family members are often more psychologically stressed than the patient, 4) cancer as a challenge for the family, and 5) intervention approaches and models to reduce family stress. The review identifies some consistent findings across studies:
- the importance of social support, which can act as a buffer in diminishing the negative aspects of the disease for the patient
- the influence of negative support and conflict in the support system and the different coping preferences of older adults (religiosity, cognitive strategies, and optimism) compared to younger adults( problem-solving)
- the physical and psychological impairments of older adult caregivers
- the complex dynamics of the disease process and the way it impacts family
- the evidence of effectiveness of educational and support interventions.
The authors advocate for more longitudinal research studies with homogenous populations that could identify specific needs and burdens for different caregiving groups.
- Surbone, A., Kagawa-Singer, M., Terret, C., & Baider, L. (2007). The illness trajectory of elderly cancer patients across cultures: SIOG position paper. Annals of Oncology, 18, 633-638.
The authors review the “scanty” literature on the care of older cancer patients and explore the question of why they are less likely than younger patients to receive optimal medical, psychological, and spiritual treatment. Also, using literature from their research in medical oncology and their knowledge from anthropology and bioethics, the authors advocate for a broader understanding of the psychological and cultural factors contributing to the illness trajectory of elderly cancer patients. They raise questions about the social and existential meaning of cancer to older adults shaped by the strengths and experience they bring to this phase of their lives. Older patients confront ethical questions from society and professionals about the appropriate use of health care resources for the elderly. These concerns may also influence how professionals treat them and the health options they give them. The authors encourage consideration of the roles of older adults through their life experiences as they are shaped by gender and their support networks, and how these roles are impacted by the disease. For example, the loss of interpersonal support from a partner of many decades may be particularly stressful to an older caregiver. How do older adults cope with cancer, how do they attain a sense of mastery and self-efficacy? How does culture shape their identity and view of the world, and how does culture interact with generational and cohort differences?
While older adults may approach illness and death with equanimity and acceptance as a natural course without social disengagement, the tendency in more industrialized countries is to devalue the elderly, creating experiences of social isolation and abandonment. This often occurs during episodes of serious illness. The goal of this literature review and analysis is to encourage research and practice that goes beyond a focus on physiological and psychological changes of aging and the pathophysiology of cancer in the elderly and to encourage study of the social and cultural aspects of aging that will promote more culturally competent care across the illness trajectory.
Document Date: September 11, 2009
Source: Les Gallo-Silver, MSW
Program Director
Associate Professor
Human Services Program
LaGuardia Community College, CUNY
Mr. Chu, a 67-year-old man born in China, emigrated to the United States 40 years ago. While fluent in English (although with a heavy accent) he is most comfortable speaking Cantonese. He has been married to his wife for 35 years, having met her in the U.S. Mrs. Chu, who is 12 years younger than her husband, is not fluent in English. They have three children, all now adults living out of the home: two married daughters ages 36 and 37, and an unmarried son age 28. Until recently Mr. Chu worked as a jeweler repairing jewelry and watches in a shop owned by his cousin. He presented with a profound loss of weight, coughing and having difficulty swallowing. Through an out-patient medical work-up, he was diagnosed with esophageal cancer. The social worker met the family on the medical visits at which the diagnosis and treatment were discussed. Their older daughter, a lawyer (recently a stay-at-home mother with her third child), acted as a translator and interpreter for her family. Mr. Chu refused the service s of a hospital translator. The daughter and Mrs. Chu did not want the doctor to use the word cancer but agreed to the use of the word tumor. They family feared Mr. Chu would give up and die quickly if told he had cancer. The social worker explored this with the wife and daughter to gain an understanding of how the Chinese community copes with a diagnosis of cancer. The social worker also explored the family's previous experiences with cancer. Mrs. Chu indicated that her father died of lung cancer and that Mr. Chu's mother died of stomach cancer. Both died soon after their diagnosis but were treated with chemotherapy that made them very ill. Both were admitted to hospitals and neither was ever discharged. Both died in a hospital. Mr. Chu's mother was treated in China; Mrs. Chu's father was treated in the U.S.
The health care team agreed to refer to Mr. Chu's illness as a tumor in his esophagus, but they indicated to the family that they were obligated to answer all of Mr. Chu's questions honestly and clearly.
The social worker discussed with the health care team the cultural issues involved, the family history, and the family's concern about Mr. Chu giving up hope.
When Mr. Chu received his diagnosis, he seemed to understand he had cancer even though the word was not specifically used. Mr. Chu indicated he would refuse treatment and go home to die. He ordered his daughter to inform the immediate and extended family so they could visit him to say good-bye. His wife began to cry, and his daughter engaged Mr. Chu in what seemed to be a heated discussion. The health care team left the family with the social worker to sort through the information given and to assist Mr. Chu in planning and decision-making.
The social worker empathized with the daughter and in English she discussed her fears and anger about her father's refusal of treatment. It seemed that her mother agreed with Mr. Chu that there was no hope for him. In the family meeting, the social worker validated Mr. Chu's right not to seek treatment but indicated that it was important for Mr. Chu and his family to understand exactly what he was refusing. What ensued was a review of the patient education materials provided to Mr. Chu by the nurse on the health care team. During this intervention the social worker was able to help the family explore their fears as a unit but also evaluate the treatment outlined. In addition the social worker was able to point out the contrast between Mr. Chu's current situation and those of close family members regarding different types of cancer, different types of cancer treatment, and different ways of managing side effects. Mr. Chu agreed not to make a final decision until he spoke with his son and asked the soci al worker to meet with the son as well. The social worker reminded Mr. Chu that the doctor's were concerned about him and needed him to make a decision. The social worker was able to open up the dialogue about treatment without negating Mr. Chu's initial feelings. The social worker had Mr. Chu sign a HIPPA release form indicating who in the family the health care team could discuss his medical condition with.
Mr. Chu's son was a financial manager who indicated that he was not fluent in Cantonese like his sisters. He indicated his parents were upset that he moved out of the house before getting married. He was not surprised about his father's decision against treatment indicating that his father is very old fashioned and traditional. This was also an issue of contention between father and son, and they frequently argued about the son not following the father's ways and traditions. The social worker commented that it was interesting that Mr. Chu chose his son to help him. The social worker indicated that his father was making his decision based on his understanding of cancer and cancer treatment yet asks his son who is labeled as "too modern" to help him in this situation. The social worker wondered if Mr. Chu was still open to being treated if the information gathered by the son allayed his concerns.
The son then met with the nurse clinician, who reviewed the treatment protocol, which included chemotherapy, radiation, and ultimately surgery if the tumor size is reduced by the treatments. The social worker suggested that the son discuss all of this with his father and emphasize that this was a step-by-step process in which Mr. Chu could decided not to have further treatment at any point. It was agreed that the son would accompany his father to the next appointment with the doctor to review all of this and to determine what Mr. Chu would or would not accept as a next step. At this meeting, Mr. Chu agreed to begin the chemotherapy. He asked very specific questions about his prognosis, which the doctor answered. The son was far less uncomfortable about this information being discussed openly than his mother or sister had been. The social worker pointed out that perhaps Mr. Chu had him involved in this process because he was more comfortable with what his father would describe as a "modern" discussion about cancer.
Mr. Chu struggled through his chemotherapy treatment and was challenged by side effects. The social worker remained involved and helped Mr. Chu find a comfortable way to ask for help from the health care team for his treatment side effects. Mr. Chu believed that making "a request" of the health care team was at best rude and at worse a challenge to their authority. The social worker helped Mr. Chu find the words he was comfortable using to ask questions which entailed reassuring Mr. Chu that the health care team was aware of his respect for them and his feelings of gratitude. The social worker met with the team to address these communication issues and how to reassure Mr. Chu that he was not being inappropriate.
The discussion of having a feeding tube placed in anticipation of the side effects of the radiation portion of Mr. Chu's treatment protocol was very distressing for the family and for him. Cooking and preparing food for Mr. Chu was a primary function for his wife that she felt was her contribution to helping Mr. Chu. Again, through the use of Mr. Chu's son, discussions were able to focus on this as a temporary measure. Other important roles for Mrs. Chu were identified, validated, and encouraged.
Recovery from the surgical removal of the tumor and a part of Mr. Chu's esophagus was complicated by issues of pain and pain management. Mr. Chu associated pain medication as an indication that the treatment did not work and that he was dying. His mother was given morphine to ease her pain before she died. The pain nurse explained the different medications and how they help the body recover by alleviating pain. The social worker suggested that Mr. Chu keep a diary to indicate how he felt when he was on pain medication, how he felt before taking it, and what he was doing during these times. Mr. Chu determined from his own diary that he felt better and more lively on the pain medication. The social worker pointed out how this did not match his fears that pain medication meant he was dying. He also determined that he could distract himself from his feelings of pain because he felt better when he saw or spoke to his grandchildren and could concentrate on brief games of Mahjong. Mr. Chu continued to have p ain issues weeks after the surgery but was willing to use pain medication to obtain relief.
Mr. Chu continued to recover slowly and to adjust to the changes caused by his surgery. This had particular impact on eating and meals. Mrs. Chu "experimented" with what foods were comfortable for Mr. Chu to eat and digest. She now had to prepare frequent small meals, which she liked because she "could do more" for her husband. Mr. Chu is aware that his tumor could come back but has been able to enjoy his survivorship through being with family and friends.
Discussion questions
Using Table 3, the biopsychosocial health needs and services required to address them, answer the following questions regarding this case:
- Of the seven assessment areas outlined in Table 3, what information do you have for each?
- Which of the seven areas were most prominent in the assessment and development of a treatment plan for the short term and for the long term with this family?
- How was the family history of illness relevant to assessment of the family’s understanding of the current illness?How did the family’s culture influence their decision-making process? How important was the son’s, as contrasted to the wife’s and the daughters’, involvement in the father’s decision-making process? What interventions did the social worker use to integrate the family’s culture in the decision-making process?
- What strengths does this family’s culture evidence for adaptation to a cancer illness?
- What are the vulnerabilities of their cultural approach to adaptation to chronic or advanced cancer illness? What interventions might help them prepare for future adversities?
- Describe the various methods of education and information provided throughout the illness process.
- What was the social worker’s role in providing emotional support to this family?
- Discuss other cases that present these types of issues of communication in your own practice setting and the intervention approaches that were used.
Care/patient navigation programs are care coordination approaches currently recommended for vulnerable populations of cancer patients.
- How might such a program, implemented by a social worker, be developed to provide education and advocacy, link services, and reduce barriers to treatment and recovery for this older Asian patient and his family?
- How might a patient/care navigation program be used with this family or others from this or a different cultural background?
- Include longer term follow-up plans as well as psychosocial screening to identify vulnerable clients and to link services, education, and advocacy functions.
Document Date: September 11, 2009
American Cancer Society (ACS). ACS is a nationwide voluntary health organization that provides cancer resources for patients, families, and professionals on-line and in the community.
Association of Oncology Social Work (AOSW). The AOSW is a non-profit, international organization dedicated to the enhancement of psychosocial services to people with cancer and their families. Created in 1984 by social workers interested in oncology and by existing national cancer organizations, AOSW is an expanding force of psychosocial oncology professionals. Educational resources for patients, families, and professionals are included in the Web site.
CancerCare. CancerCare is a nonprofit organization that provides free professional education and support services on-line and by telephone for anyone affected by cancer. Their booklets and PowerPoints for patients and families cover a broad range of topics and are instructive to professionals as well. They also provide workshops and educational teleconferences for professionals on different types of cancer, treatment, and a broad range of psychosocial aspects.
Susan G. Komen for the Cure. Komen, a grassroots network of survivors and activists, provides on-line information and resources for breast cancer survivors.
The Wellness Community (TWC). TWC provides support groups, activities, and other resources on-line and in their many community sites.
Gilda’s Club. This nonprofit organization provides free meeting places nationwide where men, women, and children living with cancer, along with their families and friends, can join with others to build a personal network of social and emotional support as an integral part of cancer treatment. Gilda's Clubs offer support and networking groups, seminars, workshops, specialized children's programs, and social events in a nonresidential and home-like setting.
Nueva Vida. Nueva Vida’s mission is to inform, support, and empower Latinas whose lives are affected by cancer.
National Cancer Institute Office of Cancer Survivorship (OCS). OCS provides current information on survivorship research, resources, and publications.
Document Date: September 11, 2009
Download this PowerPoint for Section 2.4 of the Health Resource Review.
Document Date: September 11, 2009
Victoria Rizzo, PhD—Assistant Professor, Columbia University School of Social Work
Osteoarthritis
Although chronic illnesses in older adults have predictable psychological and social impacts, the specific characteristics of any disease influence the adaptive challenge it presents. To be effective, social work roles, interventions, and service delivery models need to be designed and developed to take account of the particular characteristics of the illness and its affect on patients, families, and communities. Such defining characteristics for the biopsychosocial assessment and interventions include, for example:
- Its prevalence
- Its life threat
- The disease and treatment trajectory over time
- The effects and side effects of required treatments
- The impact on patient functioning in all domains
- Societal attitudes to the disease
- Implications for care coordination
Presented here is the example of osteoarthritis: a disease that has a high prevalence in older adults; is the most common type of arthritis; is the leading physical illness cause of functional disability; often leads to depression in affected individuals as a result of common symptoms, such as pain and limited mobility; and only recently has been viewed as a public health issue among older adults that requires treatment, mainly through the use of disease management programs. The use of care coordination models with older adults with osteoarthritis has recently been identified as a complement to osteoarthritis disease management programs that have been endorsed by the Centers for Disease Control (CDC). Despite the evidence base for effectiveness of these disease management programs and their availability nationwide due to CDC support, many frail older adults are not utilizing them. Care coordination models can be used to address some of the modifiable barriers to program participation as well as safe and maximal independence necessary to age in place. Care coordination models for older adults with osteoarthritis should include health care system and social service systems navigation to improve access to, and continuity of, care and services and patient and caregiver support/education.
Epidemiology: Osteoarthritis and Age
Prevalence Overview
- Arthritis is among the most common chronic diseases in the United States, affecting 46 million adults.
Furthermore, arthritis is the leading self-reported disability caused by a chronic illness: 19 million adults reported limited activity because of the disease in 2002 (Centers for Disease Control [CDC], 2008a). Arthritis is estimated to cost $81 billion a year and is responsible for 750,000 hospitalizations and 36 million outpatient physician visits each year (CDC, 2008a). More than half of all adults diagnosed with diabetes or heart disease also have some form of arthritis (CDC, 2007a). Overall projections concerning the prevalence of arthritis are presented in Figure 1.
- Osteoarthritis is the most common type of arthritis, and its prevalence grows with increased age (CDC, 2008b).
The most commonly affected joints include the knees, hips, and hands (Lawrence et al., 2008). Lawrence and colleagues report that estimating the prevalence of osteoarthritis is difficult because the physical changes associated with the disease occur as a person ages, but many times no symptoms are associated with these changes. A diagnosis of symptomatic osteoarthritis requires that a person must have reported frequent pain in a joint, and there must be radiographic evidence of osteoarthritis in that joint. Most surveys of prevalence require individuals to have reported pain in the joint for a significant number of days (more than half) in one month to meet the symptomatic definition of the disease (Lawrence et al., 2008). Approximately 26.9 million people aged 25 and older are currently diagnosed with it. By 2030, 72 million people (20% of the U.S. population) will have reached age 65 and will thus be at increased risk for the disease (National Institute of Arthritis and Musculoskeletal and Skin Diseases, 2006). Figure 2 shows the projected prevalence rates.
The Changing Trajectory of Osteoarthritis as a Disease
- The number of people with osteoarthritis is expected to increase significantly in the next two decades.
By 2030, shifting demographics will result in a tripling of the population of adults 65 years of age or older (1 in 5 Americans, or 72 million). Furthermore, staggering increases in the prevalence of obesity, from 15% in 1980 to 33% in 2004, have the potential to significantly increase the number of older people reporting doctor-diagnosed osteoarthritis. Older age and obesity are both correlated with a higher prevalence of the disease. Freedman and colleagues (2007) reported that the number of cases nationally will increase by 16% between 2005 and 2030, with 14 states projecting that cases of doctor-diagnosed cases will increase from 30% to 87% by 2030. See Table 1 for state-by-state projections (CDC, 2005).
Given that the current evidence-based exercise and disease management programs endorsed for osteoarthritis by the CDC are underused nationwide (only 11% of those diagnosed have participated) and that the disease is the leading physical cause of functional impairment in activities of daily living (ADLs), extending the reach of these program into communities will become increasingly important. Furthermore, it will become increasingly important to develop new interventions that address the broad range of biopsychosocial difficulties people with the disease experience (Freedman et al., 2007).
Impact of Osteoarthritis on Older Adults
- Osteoarthritis affects the ADLs and increases the risk of depression, which in itself has an additive impact. In addition, the peak age for diagnosis is higher in women (85+ years) than in men (75-84 years).
Osteoarthritis limits a person’s ability to perform the ADLs, work, and leisure. Furthermore, common symptoms, such as pain and limited mobility, are likely to be related to depression, which has an additive impact on disability and quality of life in chronic illnesses, including arthritis (Stein, Cox, Affix, Belk, & Sateen, 2006; Vail & Walkup, 1998). As Figure 3 illustrates, women of all ages are disproportionately affected by arthritis compared to men (CDC, 2008a).
In 2006, women aged 85 and older accounted for 60% of all doctor-diagnosed arthritis reported. Not surprisingly, the figure for men peaks at approximately 47% between the ages 75 and 84 because of the difference in average life expectancy. The oldest old women report greater activity and work limitations, psychological distress, and severe joint pain than their male counterparts do (Theist, Helmick, & Hootman, 2007). Women also have higher rates of the disease than men do, especially after age 50, and the incidence of knee and hip involvement is most common among women. Replacement of the hip and knee joints also are the most costly treatments. Although older Black patients and people with low incomes have fewer surgeries, they have many more complications and a higher risk of mortality than White patients do.
The fact that the impact of osteoarthritis increases with age is attributable to both modifiable and nonmodifiable risk factors. Modifiable risk factors include excess body mass, joint injury, occupation, and muscle weakness, whereas nonmodifiable risk factors include genetic predisposition, older age, gender, and race (Asians are at lowest risk) (CDC, 2008b).
Factors Affecting the Impact of Osteoarthritis in Older Age
- Osteoarthritis is a significant public health issue for older adults.
The years 2002 to 2011 have been declared the United States (and International) Bone and Joint Decade (USBJD). As part of the worldwide Bone and Joint Decade initiative, U.S. patient and physician healthcare organizations, government agencies, and industry have come together as the USBJD to improve prevention programs for bone and joint diseases as well as to improve the quality of life of patients, and this begins with increased awareness, solid information, and increased research. The USBJD’s activities include providing leadership and support for increased prevention, improved treatment, research, and education for all diseases affecting the joints and bones, including osteoarthritis. The ultimate goal of this effort is to improve the quality of life for individuals with bone and joint diseases worldwide (USBJD, 2002).
In response to this designation, the National Arthritis Action Plan (Arthritis Foundation, Association of State and Territorial Health Officials, CDC, 1999) and Healthy People 2010 (DHHS, 2000) have identified arthritis as a major public health issue that can be addressed using prevention, education, and research strategies. According to these sources, existing disease management programs that have been empirically tested are effective means of increasing people’s knowledge about arthritis and increasing their self-efficacy in managing the disease, while reducing their symptoms, such as pain and stiffness, depression, and social isolation. The ultimate purpose of these programs is to maximize the community-dwelling person’s ability to remain independent and enjoy a satisfactory quality of life.
- Older adults underutilize programs proven to be effective in managing osteoarthritis.
The CDC recommends several evidence-based disease management programs that have empirically demonstrated their ability to improve the quality of life for people diagnosed with the condition. Using intervention screening criteria developed specifically to identify appropriate programs, the CDC (2007c) currently recommends two self-management education programs (The Arthritis Foundation Self-Help Program and the Chronic Disease Self-Management Program), three physical activity programs (Active Living Everyday, Arthritis Foundation Aquatics Program, and EnhanceFitness®), and two health communications programs that promote physical activity (Physical Activity: The Arthritis Pain Reliever and Buenos Dias, Artritis).
The CDC also has three physical activity programs on its “watch list,” meaning that those programs are likely to be recommended, and two self-management programs and two physical activity programs on its “promising practices” list, meaning that preliminary findings from their evaluations are promising (CDC, 2007d). The CDC, in partnership with the National Arthritis Foundation and its state-level chapters, are collaborating to increase the capacity to deliver disease management programs throughout the country. Currently, 36 states receive funding to deliver disease management programs to people with all forms of arthritis.
- The Arthritis Foundation Self-help Program (Lorig & Fries, 2000), a course designed for people diagnosed with all types of arthritis by Kate Lorig at the Stanford Arthritis Center, is among the most popular disease management courses offered.
The Arthritis Foundation Self-help Program (adopted in 1981) is an educational program offered in a group setting to teach people different techniques to manage their arthritis and take a more active part in their own care. The course is generally taught over 6 consecutive weeks in sessions lasting 2 hours each. It is taught by a trained instructor using instructional techniques, such as active participation, lecture, discussion, brainstorming, and role playing. The topics covered include self-help principles, the disease process, exercise and fitness, pain management, relaxation, anger, fear and frustration, nutrition, problem-solving, communication skills, doctor-patient relations, medication, and nontraditional treatments. The program’s impact on clients is determined by the following outcome measures: daily activity level, changes in symptoms, knowledge about arthritis, self-efficacy, depression, and client satisfaction. Rigorous evaluations have demonstrated the positive effects of participating in the program. Four years after the program, 20% of the participants reported decreased pain and 40% reported fewer visits to their physician. Capacity-building efforts in individual states have had similar outcomes when this evidence-based intervention has been translated into practice in community-based settings (Rizzo, Smith, Levine, & Greco, 2007).
- Despite the effectiveness of these disease management courses, only 11% of persons with arthritis participate in them.
In an effort to increase participation, the National Arthritis Plan (1999) recommended the development and implementation of community-wide strategies, including public awareness campaigns and marketing, to increase the penetration and reach of these programs in the community. State-level efforts have demonstrated some success with these strategies. For example, a disease management capacity-building initiative implemented by the New York State chapters of the Arthritis Foundation has resulted in the training of 634 new course instructors, the delivery of 354 new disease management courses statewide, and the participation of more than 6,000 clients with arthritis in disease management courses over 3 years throughout the state (Rizzo, et al., 2007).
Critical Challenges of Osteoarthritis in Older Adults
- First Challenge: Managing osteoarthritis and co-morbidities.
As stated earlier in this module, many people with doctor-diagnosed osteoarthritis are managing other diseases, such as heart disease and diabetes. However, two co-morbidities (pain and depression) require special attention because of their interrelatedness in osteoarthritis and their negative impact on functional limitations and quality of life.
Pain is common, and its intensity increases with age and duration of the disease. In their review of the literature, Jakobsson and Halberg (2002) concluded that increased pain caused by the disease can lead to increased depression. Furthermore, they reported that social support can buffer against the negative effects of the pain on quality-of-life outcomes, including depression.
Analyses of 1996 Health and Retirement Survey data revealed a significant association (an attributable risk of 18%) between arthritis and major depression, likely the result of functional limitations related to progression of the disease (CDC, 2004). Zautra and Smith (2001) suggested that depressive symptoms are likely to be related to weekly elevations in the degree of pain. When Lin and colleagues (2003) examined the impact of depression management on the pain and functional outcomes among older adults diagnosed with arthritis, they found that, compared with counterparts who received standard care, the people who received antidepressants or six to eight sessions of psychotherapy or both experienced significant decreases in the intensity of pain, in interference with ADLs caused by progression of disease, and in interference with ADLs resulting from pain.
Despite the fact that the interrelatedness of pain, limited ADLs, and depression associated with osteoarthritis is well established, primary care physicians often fail to include an assessment of ADL limitations, depression, or anxiety when examining their osteoarthritis patients (Memel, Kirwan, Sharp, & Hehir, 2000). One critical role for social workers is to include assessments of these factors when working with older adults diagnosed with the disease and addressing them with empirically tested interventions, including antidepressants, psychotherapy, disease management programs, and training in pain coping skills (Keefe et al., 2002).
- Second Challenge: Increasing the participation in evidence-based programs for osteoarthritis, especially among high-risk underserved populations.
Statewide efforts funded by the CDC and state-level departments of health have demonstrated some success with increasing the numbers of people with arthritis who participate in disease management programs. Despite these successful efforts, however, only 1% of the arthritis population in New York State participates in these programs. Furthermore, the vast majority of participants are non-Hispanic Whites, who have some college education, some form of medical insurance, and minimal impairment of ADLs, which suggests disparities in the recruitment, enrollment, and retention of people at high risk: e.g., people of color, those who are less educated, and those with more impairment in the ADLs (Rizzo et al., 2007).
Qualitative studies that examine the barriers to use of health services that influence participation in disease management programs for osteoarthritis (exercise-based programs) are extremely limited in the available literature. Of the three identified studies (Der Ananian, Wilcox, Saunders, Watkins, & Evans, 2006; Kamwendo, Askenbom, & Wahlgren, 1999; Lambert et al., 2000), only Der Ananian and colleagues (2006) examined the barriers to participation in disease management programs. In their study of 46 individuals with various types of arthritis, they found that three categories of individual barriers influenced participation in exercise programs are (1) physical (pain, mobility, co-morbidity, arthritis-related illness, and fatigue), (2) psychological (attitudes/beliefs, perceived negative outcomes, and depression), and (3) social/environmental (insufficient advice from physicians regarding the benefits of exercise, competing roles/responsibilities, lack of available exercise programs, lack of transportation, and weather. (Der Ananian et al., 2006; Schoster et al., 2005).
Studies of patient satisfaction with disease management programs suggest that people with osteoarthritis have needs that are not being addressed by these programs. For example, Holman and Lorig (2004) identified the primary determinants of health that participants in such programs want addressed to self-manage their arthritis: (1) access to information about the diagnosis and its implications and available treatments, (2) continuity of care, (3) coordination of care, (4) strategies for coping with symptoms, such as pain, fatigue, and loss of independence, and (5) ways to adjust to consequences of the disease, such as fear, depression, and uncertainty. Although most programs include cursory mention of items 1, 4, and 5, few, if any, address items 2 and 3.
These studies suggest that disease management programs alone are not the answer to the prevention and management of increased symptoms of osteoarthritis. First, because they are not reaching a majority of the most vulnerable people who have the disease, including, but not limited to, people of color, those with increased limitations in ADLs, and those with lower levels of education. And second, because they do not meet all the identified needs of people with osteoarthritis. One promising intervention that addresses both difficulties is social work care coordination.
- Third Challenge: Developing and implementing interventions that identify and address the biopsychosocial issues that have a significant impact on osteoarthritis and are not addressed in current interventions.
The Institute of Medicine (IOM) has identified care coordination as one strategy to improve the quality of care for Americans with chronic and advanced illnesses along six dimensions of care: safety, effectiveness, patient centeredness, timeliness, equity, and efficiency. A recent review of Medicare demonstration projects on care coordination identified the following key gaps in current research: (1) lack of a uniform definition of care coordination and a conceptual model, (2) poorly defined care coordination interventions, (3) little focus on management of advanced and terminal illness (only 1 of 20 interventions), and (4) an underdeveloped measurement field for care coordination (Brown et al., 2007). These gaps have made it difficult for investigators to evaluate the effectiveness and efficiency of care coordination models to address the complex care that people with chronic illnesses need.
(Note: Care coordination is defined as “the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities, and is often managed by the exchange of information among participants responsible for different aspects of care” (Owens, 2007, p. 18).)
In 2007, the Agency for Health Care Research and Quality (Owens, 2007) released a meta-analysis of evaluations of care coordination programs, which concluded that the effectiveness of these programs is likely to depend on matching the program with the care coordination problem (i.e., management of osteoarthritis). Therefore, the development of an effective care coordination program for community-dwelling individuals with osteoarthritis would need to begin with a clear understanding of the characteristics of this population that inhibit their ability to manage the disease effectively through beneficial personal health practices and such health services as disease management programs.
Social Work Role: Biopsychosocial Assessment of Health Needs and Services
Both physical and psychological problems are highlighted for individuals with osteoarthritis because of symptoms of pain, limited mobility, and decreased ability to perform activities of daily living as the disease progresses. As the disease progresses and individuals become more disabled, they may become clinically depressed and unable to care for themselves in their home environments. At later stages of the disease, social support networks and family members often need to be engaged to support the client both physically and emotionally.
Table 2, which is adapted from Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (Committee on the Psychosocial Services to cancer patients/Families in a Community Setting, Institute of Medicine, 2007), describes seven domains of biopsychosocial health needs assessed by social workers and the biopsychosocial health services they have implemented to meet those needs. The table has been modified to include the needs and services unique to osteoarthritis as a chronic illness.
Social Work Role: Care Coordination
- To date, the health system’s focus on osteoarthritis patients’ biopsychosocial needs has been twofold: medical treatment of the disease (including but not limited to, joint replacements, physical therapy, and pharmacological interventions to reduce pain), and management of the disease through evidenced-based programs (e.g., the Arthritis Foundation Self-help Program) to delay or prevent progression of the disease.
The current literature focused on prevention and treatment of osteoarthritis has not identified a clear role for social workers. Disease management programs, regarded as the gold standard of care for prevention and management of the disease, are often implemented by lay people with arthritis or by paraprofessionals or professionals trained in the medical model (health educators, physical therapists, physical therapy assistants, nurses, public health workers, and nutritionists). One role for social workers in treating affected individuals is to become instructors of disease management programs endorsed by the CDC and the National Arthritis Foundation (see description above on pp 6-7).
However, disease management programs fail to address many of the biopsychosocial issues identified by individuals diagnosed with osteoarthritis as negatively impacting their ability to remain in the community with maximum physical function and quality of life. These include (1) access to information concerning diagnosis and its implications and available treatments; (2) continuity of care, (3) coordination of care, (4) strategies for coping with symptoms, such as pain, fatigue and loss of independence, and (5) ways to adjust to consequences of the disease, such as fear, depression, and uncertainty (Der Ananian et al., 2006). In addition, some evidence indicates that the available disease management programs are not successful at recruiting the populations that could benefit the most from them (Rizzo et al., 2006, 2007). Three categories of individual barriers that influence participation in exercise programs are (1) physical (pain, mobility, co-morbidity, arthritis-related illness, and fatigue), (2) psychological (attitudes/beliefs, perceived negative outcomes, and depression), and (3) social/environmental (insufficient advice from physicians regarding the benefits of exercise, competing roles/responsibilities, lack of available exercise programs, lack of transportation, and weather. (Der Ananian et al., 2006; Schoster et al., 2005).
Therefore, it is important for social workers to identify the primary determinants of health behaviors that inhibit patients’ participation in disease management programs and other positive health practices for management and to use the findings to develop a social work care coordination model that can more fully address all the biopsychosocial needs of patients. By virtue of their professional training, social workers are well positioned to assist clients who have needs in the areas identified above. Four specific ways social workers can address some of these needs include the following:
- Incorporate better screening and assessment of functional impairment, pain, depression, and anxiety of patients with osteoarthritis when they implement the treatments described in the program’s manual (e.g., the Arthritis Foundation Self-help Program).
- Educate patients about their diagnosis and it implications as well as available treatments; include the disease as a part of the routine assessment of all older adults the practitioners work with, given its increasing prevalence with age.
- Advocate for the delivery of disease management programs in tandem with social work intervention strategies for coordination of care in health facilities and in nontraditional settings that may attract underserved populations (e.g., churches, community centers, and libraries).
- Develop and implement better outreach and screening and assessment strategies for use with the most vulnerable and underserved populations (e.g., people of color, people of low income, and frail older adults with few social supports).
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Schoster, B., Callahan, L., Meier, A., Mielenz, T., & DiMartino, L. (2005). The People with Arthritis Can Exercise (PACE) program: A qualitative evaluation of participant satisfaction. Preventing Chronic Disease: Public Health Research, Practice, and Policy, 2 (3), 1 – 11.
Stein, M. B., Cox, B., Affix, T., Belk, S., & Sateen, J. (2006). Does co-morbid depressive illness magnify the impact of chronic illness? A population-based perspective. Psychological Medicine, 36(5), 587-596.
Theist, T., Helmick, C., & Hootman, J. (2007). Arthritis burden and impact are greater among U.S. women than men: intervention opportunities. Journal of Women’s Health, 16(4), 441-453.
United States Bone and Joint Decade. (2002). About the decade. Retrieved on March 2, 2008, from http://www.usbjd.org/about/index.cfm.
U.S. Department of Health and Human Services. (2000). Health people 2010: Summary of objectives. Washington, DC: U.S. Government Printing Office.
Vail, F., & Walkup, J. (1998). Combined medical and psychological symptoms: Impact on disability and health care utilization of patients with arthritis. Medical Care, 37(7), 1073-1084.
Zautra, A., & Smith, B. (2001). Depression and reactivity to stress in older women with rheumatoid arthritis and osteoarthritis.Psychosomatic Medicine, 63, 687-696.
Document Date: September 11, 2009
- Loscalzo, M., & Brintzenhofeszoc, K. (1998). Brief crisis counseling. In J. Holland (Ed.), Psycho-oncology (pp. 662-675). New York: Oxford University Press.
This chapter presents the impact of cancer along the disease continuum of care for the patient. It is an excellent teaching tool for helping students to conceptualize how crises may differ at different points in the illness trajectory. The table containing a description of the meaning of these crises for the patient and for the family is particularly useful.
- Maramaldi, P., & Lee, J. (2006). Older adults with cancer. In B. Berkman (Ed.), Handbook of social work in health and aging (pp. 7-18). New York: Oxford University Press.
This chapter provides an overview of the most common cancers in older adults, their treatment, prognoses, and functional challenges for both the patient and the caregiver. It highlights the fact that older adults bear a disproportionate cancer burden in the U.S. Importantly the authors also outline the social work role in providing effective intervention.
- Yancik, R., Wesley, M., & Ries, L. (2001). Effect of age and comorbidity in postmenopausal breast cancer patients aged 55 years and older. Journal of the American Medical Association, 285(7), 885-892.
Because two thirds of all newly diagnosed female breast cancer patients are postmenopausal or over 55 years of age, it is an important cancer for health social workers to be informed about when they are involved with this age group. In fact the peak incidence occurs in women over the age of 70 years. The author uses cancer to illustrate how a chronic disease in older adults is often complicated by co-morbid conditions; limiting diagnostic tests and examinations and narrowing treatment choices for the “index” illness. The number and severity of co-morbid conditions increases over time and includes those such as hypertension, arthritis, high severity heart disease, previous malignancy, stroke/TIA, diabetes, and COPD. The authors advocate that aging and co-morbidity be incorporated into the mainstream of breast cancer clinical research and clinical trials in order to evaluate cancer treatment options for older women and develop more appropriate and evidence-based criteria for breast treatment decisions in this population.
- Raveis, V. (2007). The challenges and issues confronting family caregivers to elderly cancer patients. In S. Carmel, C. Morse, & F. Torres-Gil (Eds.), Lessons on aging from three nations, Volume II: The art of caring for older adults (pp. 85-97). Amityville, NY: Baywood Publishing.
This article is a comprehensive and evidence-based review of the many stresses on older caregivers of cancer patients. In great detail and with helpful examples and illustrations the author discusses the complex psychosocial challenges caregivers confront at diagnosis and treatment and during survivorship. She thoroughly reviews the high costs of cancer caregiving including “…restrictions on occupational, social, and leisure activities; a loss of privacy; financial burdens; conflicts with well family members; physical strain; and chronic fatigue” (p. ?) that often result in adverse psychological and physical conditions. She also thoroughly explores the impact of the life stage on the caregiver including the spouse, but also older daughters. She joins the chorus of voices urging greater research and programmatic attention to understanding the multiple interconnected issues families encounter while caring for an elderly relative with cancer. Her detailed description of the factors affecting their experience provides a clear understanding of just how challenging it is do develop effective interventions.
- Kotkamp-Mothes, N., Slawinsky, D., Hindermann, S., & Strauss, B. (2005). Coping and psychological well being in families of elderly cancer patients. Oncology Hematology, 55, 213-229.
This article presents a thorough review of research findings and suggests directions for future studies on elderly cancer patients and the consequences of their disease for their partners and families. The authors are from Germany and extend their review to studies conducted in Europe, North America, and other continents. and European studies. Studies are reviewed as they relate to five different areas of family functioning: 1) the family and the etiology of the disease, 2) the family as a source of support, 3) the family as a second order patient, since family members are often more psychologically stressed than the patient, 4) cancer as a challenge for the family, and 5) intervention approaches and models to reduce family stress. The review identifies some consistent findings across studies:
- the importance of social support, which can act as a buffer in diminishing the negative aspects of the disease for the patient
- the influence of negative support and conflict in the support system and the different coping preferences of older adults (religiosity, cognitive strategies, and optimism) compared to younger adults( problem-solving)
- the physical and psychological impairments of older adult caregivers
- the complex dynamics of the disease process and the way it impacts family
- the evidence of effectiveness of educational and support interventions.
The authors advocate for more longitudinal research studies with homogenous populations that could identify specific needs and burdens for different caregiving groups.
- Surbone, A., Kagawa-Singer, M., Terret, C., & Baider, L. (2007). The illness trajectory of elderly cancer patients across cultures: SIOG position paper. Annals of Oncology, 18, 633-638.
The authors review the “scanty” literature on the care of older cancer patients and explore the question of why they are less likely than younger patients to receive optimal medical, psychological, and spiritual treatment. Also, using literature from their research in medical oncology and their knowledge from anthropology and bioethics, the authors advocate for a broader understanding of the psychological and cultural factors contributing to the illness trajectory of elderly cancer patients. They raise questions about the social and existential meaning of cancer to older adults shaped by the strengths and experience they bring to this phase of their lives. Older patients confront ethical questions from society and professionals about the appropriate use of health care resources for the elderly. These concerns may also influence how professionals treat them and the health options they give them. The authors encourage consideration of the roles of older adults through their life experiences as they are shaped by gender and their support networks, and how these roles are impacted by the disease. For example, the loss of interpersonal support from a partner of many decades may be particularly stressful to an older caregiver. How do older adults cope with cancer, how do they attain a sense of mastery and self-efficacy? How does culture shape their identity and view of the world, and how does culture interact with generational and cohort differences?
While older adults may approach illness and death with equanimity and acceptance as a natural course without social disengagement, the tendency in more industrialized countries is to devalue the elderly, creating experiences of social isolation and abandonment. This often occurs during episodes of serious illness. The goal of this literature review and analysis is to encourage research and practice that goes beyond a focus on physiological and psychological changes of aging and the pathophysiology of cancer in the elderly and to encourage study of the social and cultural aspects of aging that will promote more culturally competent care across the illness trajectory.
Document Date: September 11, 2009
- National Arthritis Foundation. (2006). Take control with exercise. A DVD based on the Arthritis Foundation Exercise Program. Washington DC: Author.
This is an exercise tape that people with arthritis can use at home. It can be used to demonstrate the components of the arthritis exercise program to students. This program is the second most attended disease management program for people with osteoarthritis.
- Centers for Disease Control & Prevention Directors of Health Promotion and Education. (2004). Implementing self-management education: Successes and challenges in arthritis. Produced by the Alabama Department of Public Health. (Available in VHS and DVD; running time, 2 hours, 20 minutes.)
This video provides students with a discussion of the difficulties and successes inherent in implementing arthritis disease management programs in the community. The video consists of a panel discussion with high-level individuals throughout the U.S. who have implemented arthritis disease management programs in their states.
- School of Public Health, University at Albany, State University of New York. (2003). Dispelling the myths of arthritis: How to take control. Albany, New York: Author. (Available in VHS; running time, approximately 1 hour.)
The aim of this video is to help dispel myths that all of us have regarding arthritis. It can be used in class to for discuss about misconceptions about aging individuals with chronic illness and how social workers can help dispel these myths.
Document Date: September 11, 2009
Mrs. Santiago is an 87-year-old woman who has presented at the Emergency Department (ED) of the hospital where you worked five times in the past three months. On each occasion, she complained of severe spasms of pain in her left hip and knee that on two of the five occasions caused her to fall at home and come to the ED via ambulance. Fortunately, on these two occasions, she suffered only minor bruises and scrapes. You have been asked to see Mrs. Santiago in the ED for two reasons: 1) to ensure a safe discharge since her diagnosis of OA does not permit admission to the hospital and 2) to ensure that a longer term plan is in place to prevent another visit to the ED for her OA pain.
From her previous ED medical charts, you have the following information:
1) Medical History: Mrs. Santiago was hit by a cab driver while she was walking home from her job as a waitress when she was 57 years old. She had a steel rod placed in her left femur and a full cast on her right leg. She was in traction for 2 months. After spending several months in the hospital and a physical rehabilitation center, Mrs. Santiago was sent home. However, she stated that, “it always hurt to walk, and every time the weather changed she just wanted to stay in bed.” She had to quit her job as a waitress and only went out to grocery shop at the corner store and to the local health clinic when she could get there. She can no longer use the subway and relies on her church to find people to take her to the doctor. In the past 10 years, she has been diagnosed with hypertension and diabetes, which she regulates with medication “when she has the money to buy it.” About 3 years ago, Mrs. Santiago complained to a neighborhood health clinic resident that her pain in her hip and knee had gotten much worse. X-rays confirmed a diagnosis of osteoarthritis (OA) in her left knee and hip. The physician prescribed NSAIDS and participation in a disease management program. Mrs. Santiago never followed through with either treatment. She reported, in past ED visits, that she just takes aspirin and uses a hot water bottle when she “gets to hurtin’ something awful.” During two of her previous visits, she was given steroid injections to relieve her pain, and she says this is the only thing that works. Currently, she has no regular physician, and she has never seen an orthopedic surgeon or rheumatologist for her OA. The ED physician gave her another injection and has recommended that she see a surgeon for possible hip replacement surgery. Mrs. Santiago reports that “she ain’t havin’ no surgery in this hospital.”
2) Occupational History: Mrs. Santiago was a waitress until she became permanently disabled after the cab accident. She receives a small Social Security Disability check monthly. She also has Medicare. She has never applied for any social services including Medicaid or SSI or HEAP. She lives in a rent-controlled apartment and says she gets by “with help from her church and the local food pantry at the end of each month.”
3) Family History: Mrs. Santiago came to New York City from Puerto Rico when she was 22 years old with her husband. They settled in her current apartment in the Bronx. She worked as a waitress and he was a day laborer. They had one child. Her husband died in a construction site accident when she was 53 years old. A year later her only son, Roberto, was killed in a gang related shooting. He was mistaken as a gang member on his way home from work at a local diner as a dishwasher. Mrs. Santiago has lived alone since the death of her husband and son. She was active in her church until her accident. Since that time, she has lost touch with many of her friends. She has one sister in Puerto Rico that she talks to on the phone once a month. A friendly visitor comes from her local church once a week to give her communion.
4) Psychological History: Mrs. Santiago denies that she has been depressed. However, previous records indicate that she has lost 30 pounds since her first ED visit and that she has a flat affect. She also reported in her last two visits that she wants to sleep all the time and doesn’t even want to visit with her church members anymore when they come to see her. She says she is tired of being in pain all the time.
Using Table 2 (the biopsychosocial health needs and formal services required to address them) answer the following questions regarding this case:
- Of the seven assessment areas outlined in the power point, what information do you have for each?
- Given the current situation, which of the seven areas will be most prominent for your assessment and development of a treatment plan for the short term and the long term?
- Formulate questions you would ask in each of these areas.
How important is it to gain a better understanding of Mrs. Santiago’s culture and religious beliefs to complete her assessment and care coordination plan? What would you want to know and how would you go about getting this information?
As an ED social worker how would you design and develop a social work care coordination model that you could use with Mrs. Santiago and similar patients to help minimize their use of the ED inappropriately and appropriately maximize their use of community-based services to manage their illnesses? What would be your short-range discharge plan to get Mrs. Santiago out of the ED and home safely? What plan would you put in motion to minimize her inappropriate use of the ED in the future?
Of the four ways that were identified in the Table (and PowerPoint file for this section) to address the needs of older OA patients, which ones would be prominent in this case? Justify your choices.
Document Date: September 11, 2009
This Web site is connected to a trade organization for people working in the disease management industry. Here, one can find excellent general information about disease management programs. The site also includes the “DM LitFinder” data base, which allows one to easily browse the peer-reviewed literature on the clinical, financial, and humanistic outcomes of disease management programs. Currently, eight conditions are included in the data base: asthma, congestive heart failure, diabetes, chronic obstructive pulmonary disease (COPD), coronary artery disease, end-stage renal disease, depression, and high-risk pregnancy.
This Web site is a comprehensive one that includes materials for both researchers and people with arthritis. The site has extensive materials on all of the Arthritis Disease Management Programs. You can access free materials and pamphlets and connect to state chapter Web sites to identify sites of arthritis programs in each state. The foundation also updates the site frequently to include the most current research reports available.
The Centers for Disease Prevention and Control Web site has an extensive section on arthritis programs. On this site, you will find the most recent arthritis-related statistics, articles about arthritis research, arthritis intervention programs, educational materials about each type of disease, and information about the CDC’s latest activities in this area. The site also provides links to other important Web sites concerning arthritis.
Document Date: September 11, 2009
Download this PowerPoint for Section 2.5 of the Health Resource Review.
Document Date: September 11, 2009
Gunnar Almgren, PhD, LCSW —University of Washington, School of Social Work
Social Policy
Synopsis
Three policy issues related to aging and chronic disease are highlighted and briefly explored: 1) health care inflation and the sustainability of public financing programs for the care of the chronically ill and disabled, 2) the need to transform the dominant paradigm for the organization and financing of health care as pertains to chronic disease, and 3) the persistence of health care disparities within the aged and chronically ill population despite universal insurance coverage under Medicare. Two of these policy issues, the sustainability of public financing of health care for the chronically ill and disabled and the persistence of health care disparities, could in large part be addressed by the transformation of the health care system’s historically dominant “acute care paradigm” to a new structure that is framed by an orientation toward chronic disease management.
Policy Issues
1. Confronting the Sustainability of Public Financing Programs for the Care of the Chronically Ill and Disabled
- Growing health care expenditures: In 2006, the most recent year for which complete data is available, national health care expenditures increased by 6.7% to 2.1 trillion dollars, or 16% of the gross domestic product (Catlin, Hartman, & Heffler, 2008).
Despite all the political and industry rhetoric devoted to the control of health care expenditures, the rate of inflation in health care during 2006 was two times the rate for the economy as a whole (National Coalition for Health Care, 2008). Although the rate of inflation in health care relative to the total economy fluctuates from year to year, it consistently exceeds that for the economy as a whole. As a result, the proportion of gross domestic product (GDP) represented by health care expenditures has grown from 7.2% of the GDP in 1970 to its current rate of 16.0% (Catlin et al., 2008). Notably, this is about twice the proportion of the GDP spent by comparable industrialized democracies like France, the United Kingdom, and Canada (Almgren, 2007). The most pronounced effect of this level of health care inflation is the high cost of health care insurance—whether for working-age Americans and their families or for the elderly. Among working-age Americans, in 2006 the employer-based insurance premiums for a family of four increased by 7.2%, to an annual premium cost of nearly $11, 500 (National Coalition for Health Care, 2008).
- Impact of health care inflation on publicly funded programs: Health care inflation has particularly detrimental consequences for the publicly funded programs serving the poor, the disabled, and the elderly.
The principal health insurance fund for the elderly, Medicare Hospital Insurance Trust Fund, is projected to be exhausted by the year 2019 unless health care inflation retreats or taxes for Medicare are sharply increased (Social Security and Medicare Boards of Trustees, 2008). Although funded from general state and federal revenues rather than as an insurance fund, the Medicaid program is also confronting similar sustainability problems. The Medicaid program accounts for nearly one third of publicly funded national health care expenditures, is subject to the same inflationary pressures as Medicare (Catlin et al., 2008), and every year must compete against education, transportation, law enforcement, and defense priorities for a limited pool of tax dollars. Most significantly, Medicaid is the primary funding source for the long-term care of the chronically ill and disabled (Congressional Budget Office [CBO], 1999).
Although multiple factors contribute to the problem of health care inflation and the sustainability health care financing for the elderly and the poor, among them is the reality that a small proportion of the chronically ill (both elderly and non-elderly) account for a very large share of health care expenditures. The more rigorous estimates suggest that since 1970 about 27% of health care expenditures have been concentrated among the sickest 1% of the population—of which about half are elderly (Berk & Monheit, 2001). Notably, a large share of national health care expenditures (49%) are also concentrated among five chronic conditions, three of which (diabetes, hypertension, and heart disease) are closely linked to the process of aging (Druss et al., 2001). Obviously, to the extent that the aged are an ever larger proportion of the total the population, the most economically costly chronic conditions will also increase in prevalence—thus, both further fueling health care inflation and deepening the crisis in the financing of health care.
Two essential policy alternatives are implied by these worrisome trends in health care demands and expenditures. One entails reductions in expenditures through such cost-cutting measures as reductions in payments to providers and in health care benefits to consumers—reductions that are likely to be disproportionately absorbed by the poor, the chronically ill, and the disabled. The second policy alternative, considered in the section that follows, entails a major shift in the national patient care paradigm.
2. Transforming the Dominant Paradigm in the Organization of Health Care and in Health Care Financing
- The Acute Care Paradigm: This paradigm, based on infectious diseases as the major causes of death shaped the health care system models developing during the later half of the 20th century.
The U. S. health care system, in both its financing systems and organization of services, evolved primarily during the first half of the 1900s, an era in which infectious diseases and critical short-term illnesses were dominant among causes of death, rather than chronic diseases (Almgren, 2007). The “acute care paradigm” that arose during this period thus placed emphasis on patient care systems that were effective for the treatment of periodic episodes of care over the life course. In like fashion, the prevailing health insurance models were designed to insure patients against the catastrophic costs of episodes of hospital care, and doctors and insurance companies negotiated fee structures that were based on such discrete units of care as doctor visits and specific medical procedures. Implicit in the acute care paradigm was the inflationary assumption that more intensive medical intervention during any given episode was generally better, an assumption that was reinforced by the economic incentives of the “medical free enterprise” model that shaped the American health care system (Almgren, 2007; Starr, 1982).
- The Emergence of Chronic Disease: The demographic reality is that, as infectious disease retreated as the primary population threat and life expectancy increased, chronic diseases have become the dominant causes of death and disablement and the primary reason people seek medical care (Anderson & Knickman, 2001; Miniño, Heron, Murphy, & Kochankek, 2007).
As noted by Anderson and Knickman (2001), by the year 2020 nearly 160 million Americans will have one or more chronic conditions that in turn will account for 80% of all health care expenditures. Yet, the acute care paradigm continues to reign supreme in the U.S. health care system, with all of its discontinuities and perverse financial incentives for providers. In order for the U.S. health care to turn from collapse toward the path of fiscal sustainability, its primary patient care paradigm must rapidly evolve to a model of chronic disease management (Anderson & Knickman, 2001; Eskildsen, 2007; Master & Eng, 2001; Stuart & Weinrich, 2004; Tilly, Goldenson, & Kasten, 2001).
- Implementing a Chronic Care System: Key policy challenges face researchers, policy makers, and practitioners working to develop effective management programs for chronic conditions and to deliver these programs to those in need.
As suggested by Anderson and Knickman (2001), the shift from a health care system designed around an acute care paradigm to a chronic care system better able to meet the needs of the large share of health care consumers with chronic diseases entails a number of formidable policy challenges. Included among these are 1) the development of clinical information systems better capable of supporting coordination of care, 2) the improvement of ambulatory care management of chronic conditions that contribute to unnecessary hospitalizations, 3) the alignment of physician and other provider payment mechanisms and incentives with disease management over time rather than episodic treatment of acute symptoms, and 4) a shift from specifically disease-focused interventions to interventions that are tied to functional impairments and that integrate informal and formal support systems with medical case management (Anderson & Knickman, 2001).
- Restructuring health care benefits to address a chronic disease management model may be the most essential and difficult of the challenges.
Of all of these challenges, none is more essential or more difficult than restructuring the Medicare program’s benefits and financial structures to better accommodate a chronic disease management model (Master & Eng, 2001; Williams, 2003). Under the current Medicare structure, all forms of provider care must fit within a very narrow definition of medical services to be reimbursed, a definition of care that excludes the kinds of chronic disease management services and long-term care services that are better aligned with the de facto prevalence of chronic diseases and disability among the elderly (Kane, Kane, & Ladd, 1998; O'Shaughnessy, Lyke, & Storey, 2002).
In fact it is Medicaid, the program that was originally designed as a means-tested health care financing program for the poor, that has become the primary means of funding the kinds of long-term care services that are essential to the holistic management of chronic disease. This structural fragmentation of public funding between the Medicare and Medicaid programs is replicated in the structural fragmentation of health care services—to the detriment of chronically ill older adults, all generations of taxpayers, and other segments of the population competing for a limited pool of federal and state fiscal resources. The innovative local and federal community-based care partnerships that are designed to bring coherence, integration, and cost-effectiveness to the care of the most disabled of older adults, like the federal PACE program (see suggested readings for a description of PACE program), are in serious financial jeopardy—both because states are seeking ways to reduce Medicaid expenditures and because the fiscal crisis in Medicare limits the ability of the Congress to provide long-term care financing subsidies to states.
- Impact of structural fragmentation of health care services: Despite compelling evidence of the deleterious effects of health care system fragmentation on population health outcomes, the structural reforms that are required face formidable political obstacles from provider groups having strong economic stakes in the status quo.
Perhaps the most compelling evidence of the effects of this structural fragmentation is evidenced in the extent to which the U. S. lags far behind other affluent democracies in reducing premature deaths from diseases that are amenable to timely and effective medical care, despite the fact that the U.S far exceeds all other affluent democracies in health care system expenditures. For example, over the 5-year period between 1998 and 2003, the U.S. had reduced its age-adjusted death rates from such “amenable to treatment” diseases as treatable cancers, diabetes, and cardiovascular disease by only 4%, whereas the reduction among 18 other nations was a robust 17% (Nolte & McKee, 2008). Notably, the U.S. death rates from these “amenable to treatment” diseases were generally higher to begin with, making the lag in the decline both statistically counter-intuitive and deeply troubling. In sum, although these kinds of findings highlight health care system reform as a national policy imperative, the structural reforms in Medicare and in the organization of health care services that are required face formidable political obstacles from various provider groups that have strong economic interests in protecting the status quo (Vladeck, 1999).
3. Addressing Disparities in the Care of the Chronically Ill and Older Adults: The Role of Race, Class, Gender, and Social Stigma
- Although Medicare health insurance does ensure access to care for all older persons, the access and quality of care received is not necessarily equitable for all.
The Medicare program provides universal health coverage for older Americans. However, having Medicare health insurance does not assure either equity of access to health care or equity in health care quality. Medicare health insurance coverage reduces the disparities in access and quality of health care that are prevalent across all earlier stages of the life course, but disparities by race, ethnicity, social class, and gender persist throughout the oldest age ranges as well (Agency for Health Care Research and Quality [AHRQ]; 2004, 2005).
- Double jeopardy: Impact of aging, social class, race, ethnicity, and gender.
Ageism
Older adults (particularly those with disabling chronic conditions) confront a kind of double jeopardy in their quest for appropriate and equitable care. One form of jeopardy has to do with the ageism and the stigmatization of older adults in the health care system, manifested by such clinical decisions as deferring lifesaving intervention despite otherwise favorable clinical indicators (Hamel et al., 1999) and social policy perspectives that argue for age-based limits on health care (Binstock, 2007).
Social class, race, ethnicity, and gender
The second form of jeopardy arises from the older adult’s ascribed characteristics other than age that are also associated with discrimination in the health care system: social class, race, ethnicity, and gender. A recent multi-dimensional examination of disparities in the U.S. health care system conducted by the Agency for Healthcare Research and Quality, the 2005 National Healthcare Disparities Report, examined disparities in health care among the elderly by three dimensions: prevention, timeliness of care, and access to care. The findings of this report, based on data from the 2002 Medicare Current Beneficiary Survey (MCBS), showed significant disparities in health care by race, ethnicity, and socioeconomic status across all three dimensions considered. For example, the risk of colorectal cancer increases in old age, but if detected early is generally curable. An inexpensive and simple screening tool for the early detection of colorectal cancer is the home fecal occult blood test, which if positive suggests further diagnostic investigation is warranted. However, findings from MCBS show remarkable disparities in this easy form of colorectal screening by race, ethnicity, and income level—despite the fact that all elders sampled by the MCBS were by definition Medicare eligible. It is no surprise that the incidence of late stage colorectal cancer is much higher among those groups that have lower levels of early detection screening (AHRQ, 2005). Similarly, the2005 National Healthcare Disparities Report finds that elders who are Hispanic, African American, or low-income are far less likely to have a usual source of medical care and, when seeking care, have longer wait times for their medical appointments (AHRQ, 2005). The summary point, from a policy perspective, is that Medicare’s universal health care coverage is insufficient by itself to overcome the deeply embedded disparities in the U.S. Health Care system, and that the eradication of health care disparities throughout the life course must be elevated as a central principle of health care reform.
References
Agency for Health Care Research and Quality. (2004). 2004 National healthcare disparities report (No. AHRQ No. 05-0014). Rockville, MD: U.S. Department of Health and Human Services.
Agency for Health Care Research and Quality. (2005). 2005 National healthcare Disparities report (No. AHRQ Publication No. 06-0017). Rockville, MD: U.S. Department of Health and Human Services.
Almgren, G. (2007). Health care politics, poverty and services: A social justice analysis. New York: Springer
Anderson, G., & Knickman, J. R. (2001). Changing the chronic care system to meet people's needs. Health Affairs, 20(6), 146-160.
Berk, M. L., & Monheit, A. C. (2001). The concentration of health care expenditures, revisited. Health Affairs, 20(2), 9-16.
Binstock, R. H. (2007). Our aging societies: ethical, moral, and policy challenges. Journal of Alzheimer’s Disease, 12(1), 3-9.
Catlin, A., Hartman, M., & Heffler, S. (2008). National health spending in 2006: A year of change for prescription drugs. Health Affairs, 27(1), 14-29.
Congressional Budget Office. (1999). Projections of expenditures for long-term care services for the elderly. Washington, DC: Author.
Druss, B. G., Marcus, S. C., Olfson, M., Tanielian, T., Elinson, L., & Pincus, H. (2001). Comparing the national economic burden of five chronic conditions. Health Affairs, 20(6), 233-241.
Eskildsen, M. A. (2007). Long-term acute care: a review of the literature. Journal of the American Geriatrics Society, 55(5), 775-779.
Grabowski, D. (226). The cost-effectiveness of noninstitutional long-term care services: Review and synthesis of the most recent evidence. Medical Care Research Review 63(3), 3-28.
Hamel, M., Teno, J., Goldman, L., Lynn, J., Davis, R., Galanos, A., et al. (1999). Patient age and decisions to withhold life-sustaining treatments from seriously ill, hospitalized adults. (For the SUPPORT
Investigators. Study to understand prognoses and preferences for outcomes and risks of treatment.) Archives of Internal Medicine, 130(2), 116-125.
Kane, R. A., Kane, R. L., & Ladd, R. (1998). The Heart of Long Term Care. New York: Oxford University Press.
Master, R. J., & Eng, C. (2001). Integrating acute and long-term care for high-cost populations. Health Affairs, 20(6), 161-172.
Miniño, A., Heron, M., Murphy, S., & Kochankek, K. (2007). Deaths: Final Data for 2004. National vital statistics reports: NCHS, 55(19), 1-10.
National Coalition for Health Care. (2008). Health Insurance Cost. Retrieved February 11, 2008, from http://www.nchc.org/facts/cost.shtml.
Nolte, E., & McKee, C. M. (2008). Measuring the health of nations: Updating an Earlier Analysis. Health Affairs, 27(1), 58-71.
O'Shaughnessy, C., Lyke, B., & Storey, J. (2002). Long-term care: What direction for public policy? Washington, DC: Congressional Research Service, Library of Congress.
Organisation for Economic Cooperation and Development (OECD). (2005). Health care spending and resources. Paris France: Author.
Social Security and Medicare Boards of Trustees. (2008). Status of the social security and Medicare programs: A summary of the 2007 annual reports. Retrieved February 11, 2008, from http://www.socialsecurity.gov/OACT/TRSUM/trsummary.html.
Starr, P. (1982). The social transformation of American medicine. New York: Basic Books.
Stuart, M., & Weinrich, M. (2004). Integrated health system for chronic disease management: lessons learned from France. Chest, 125(2), 695-703.
Tilly, J., Goldenson, S. M., & Kasten J. (2001). Long-term care: Consumers, providers, and financing: A Chart Book. Washington, DC: The Urban Institute.
Vladeck, B. (1999). The political economy of Medicare. Health Affairs, 18(1), 22-36.
Williams, R. D., 2nd. (2003). Restructuring Medicare: A synthesis of the NASI Medicare projects. Medicare Brief, 9, 1-8.
Document Date: September 11, 2009
The Government Accountability Office (GAO) reports are meticulously researched, politically objective, and often the most credible source of information on critical policy issues. This particular report at 20 pages is fairly brief by GAO standards; however, it quite effectively explains and graphically depicts the population health and health care expenditure dynamics undermining the fiscal sustainability of Medicare and Medicaid. The report provides the essential demographic and fiscal context necessary for any discussion of health care policy, as pertains to chronically ill and disabled populations.
- Grabowski, D. C. (2006). The cost-effectiveness of noninstitutional long-term care services: review and synthesis of the most recent evidence. Medical Care Research Review, 63(1), 3-28.
In the Balanced Budget Act of 1997, Congress established the PACE Program (Program of All-Inclusive Care for the Elderly), which integrates Medicare and Medicaid financing in order to provide a comprehensive array of medical and community-based long-term care services for older adults who are at high risk for nursing home placement. This article provides the most recent review of the literature analyzing the outcomes of PACE and similar programs.
- Master, R. J., & Eng, C. (2001). Integrating acute and long-term care for high-cost populations. Health Affairs, 20(6), 161-172.
The transformation of the health care system from an acute care paradigm to one that embraces chronic disease management must be informed by examples of systems of care that test new innovations in the organization, financing, and delivery of care to the chronically ill and disabled. Master and Eng describe the policy history of these initiatives, and then explore the policy lessons learned from programs developed through two general policy models: the Program of All-Inclusive Care for the Elderly (PACE) and the Community Medical Alliance (CMA). Although the programs examined under PACE and CMA are oriented toward different chronic disease populations, all share similar characteristics: in particular, prepaid, risk-adjusted financing; integrated Medicare and Medicaid funding streams; a flexible array of acute and long-term benefits; and integrated delivery systems that tailors benefits and services to individual need. The “lessons learned” from the programs examined highlight both the policy challenges and opportunities entailed in a shift toward widespread health care system incorporation of a chronic disease management model.
- Stuart, M., & Weinrich, M. (2004). Integrated health system for chronic disease management: lessons learned from France. Chest, 125(2), 695-703.
Stuart and Weinrich examine France’s approach to the management of a highly prevalent form of chronic disease, Chronic Obstructive Pulmonary Disease (COPD), through regional community-based specialty systems. There are four reasons this article is highly suggested reading. First, COPD is the major cause of respiratory failure, itself the fourth leading cause of death in the U.S. Second, France has been rated number one in overall health care system performance by the World Health Organization despite the fact that France’s per capital cost for health care is about half that spent by the U.S. Third, France has lower age-adjusted death rates from chronic diseases and the pace of reducing preventable deaths from chronic diseases exceeds that of the U.S. by a wide margin (Nolte & McKee, 2008). Finally, the comparisons between the U.S. and France are contextualized by recent developments in U.S. health care policy toward the chronically ill and disabled. This article is targeted at a clinical audience rather than health care policy specialist, making it far less technical and cluttered with obscure policy jargon.
The Agency for Healthcare Research and Quality (AHRQ) is a sub-agency of the U.S. Department of Health and Human Services (HHS) and the lead federal agency for research on health care quality, costs, outcomes, and patient safety. A key research program undertaken in recent years is the investigation of health care disparities within the U.S. health care system, with a special focus on the population groups where disparities in health care are most prevalent or most detrimental, including African Americans, Hispanics, Native Americans, the poor, and the elderly. Since 2003, the AHRQ has published an annual series of National Healthcare Disparities Reports, highlighting the populations affected, the forms of healthcare disparities, and progress towards specific improvements. Each of these annual reports is quite comprehensive, straightforward to interpret, and replete with compelling findings and policy implications.
Document Date: September 11, 2009
This graph shows the reductions in deaths from ischemic heart disease among 6 countries during the 5-year period between 1998 and 2003. Ischemic heart disease is a chronic health condition that is quite prevalent in old age and a leading cause of death (Miniño, Heron, Murphy, & Kochankek, 2007). It is also a disease considered highly amenable to timely and effective medical care (Nolte & McKee, 2008). Although U.S. health care spending is about 70% in excess of the average expenditures of the other countries used for comparison (OECD, 2005), it is clear that the U.S. lags considerably behind these other countries in reducing the incidence of preventable deaths due to ischemic heart disease.
Using the Policy Issues section as a reference, identify at least 3 factors within the dominant paradigm in the American medical care system that might account for some of this lag in the U.S. health care system’s effectiveness.
Document Date: September 11, 2009
Download this PowerPoint for Section 2.6 of the Health Resource Review.
Document Date: September 11, 2009