Health Resource Review

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The rapid progressive illnesses and deaths of yesteryear (infectious diseases and, more recently, cancers) have been replaced by vastly increased survival rate from such illnesses and a pandemic-like shift from acute to chronic illness, with long years of survival that are often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

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.

1. 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.
2. 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.
3. 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:

1. Essential care tasks (e.g., assess client and develop a care plan)
2. Associated coordination activities (e.g., service arranging, psycho-education)
3. 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

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.

1. 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).
2. 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.
3. 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.
4. 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

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:

1. 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.
2. Cancer doctors should make sure every one of their patients receives psychosocial care.
3. Patient education and advocacy groups should educate patients and families about the kinds of psychosocial care they should expect.
4. The NCI, the CMS, and the AHRQ should conduct large-scale demonstrations and evaluations of model psychosocial care programs.
5. Insurers – including Medicare/Medicaid—should “fully support” psychosocial health services.
6. NCI, CMS, and AHRQ should fund research on how best to evaluate psychosocial cancer care.
7. Medical groups, including licensing and accreditation boards, should require providers to be competent in delivering psychosocial health care.
8. The National Institutes of Health (NIH) should develop a standard language for describing psychosocial interventions in order to promote research and quality measurement.
9. Organizations funding cancer research should promote studies of how to improve psychosocial health care.
10. 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:

1. 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).
2. 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.
3. 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.
4. 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.
5. 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

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:

1. 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).
2. 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.
3. 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).
4.   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). 

References

Arthritis Foundation, Association of State and Territorial Health Officials, and Centers for Disease Control and Prevention. (1999). National arthritis action plan: A public health strategy. Atlanta, GA: Centers for Disease Control & Prevention.

Brown, R., Peikes, D., Chen, A., Ng, J., Schore, J., & Soh, C. (2007). The evaluation of the Medicare coordinated care demonstration: findings from the first two years. Princeton, NJ: Mathematica Policy Research, Inc.

Centers for Disease Control and Prevention (2005). Behavioral Risk Factor Surveillance System Survey Data. Atlanta, Georgia: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention.

Centers for Disease Control. (2008a). Chronic Disease-Arthritis-at-a-glance. Retrieved on January 11, 2008, from http://www.cdc.gov/nccdphp/publications/AAG/arthritis.htm.

Centers for Disease Control. (2008b). Arthritis types-overview-osteoarthritis. Retrieved on March 1, 2008, from http://www.cdc.gov/arthritis/arthritis/osteoarthritis.htm.

Centers for Disease Control. (2007a). Chronic Disease-Arthritis-at-a-glance. Retrieved on January 11, 2007, from http://www.cdc.gov/nccdphp/publications/AAG/arthritis.htm

Centers for Disease Control. (2007b). Arthritis Data and Statistics. Retrieved March 10, 2008, from http://www.cdc.gov/arthritis/data_statistics/national_data_nhis.htm#future.

Centers for Disease Control. (2007c). Arthritis Intervention Programs. Retrieved on January 4, 2008, from http://www.cdc.gov/arthritis/intervention/index.htm.

Centers for Disease Control. (2007d). Arthritis Intervention Programs. Retrieved on January 4, 2008, from http://www.cdc.gov/arthritis/intervention/lists.htm.

Centers for Disease Control. (2004). Retrieved on March 19, 2008, from http://www.cdc.gov/arthritis/data_statisitcs/arthritis_related_statisitics.htm#11.

Committee on Psychosocial Services to cancer patients/Families in a Community Setting. Institute of medicine. (2007). Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington
DC: National Academies Press.

Der Ananian, C., Wilcox, S., Saunders, R., Watkins, K., & Evans, A. (2006). Factors that influence exercise among adults with arthritis in three activity levels. Preventing Chronic Disease: Public Health Research, Practice, and Policy, 3(3), 1-20.

Freedman, M., Hootman, J., & Helmick, C. (2007). Projected state-specific increases in self-reported doctor-diagnosed arthritis and arthritis-attributable activity limitations—United States, 2005-2030. Mortality and Morbidity Weekly Report, 56(17), 423-425.

Holman, H., & Lorig, K. (2004). Patient self-management: A key to effectiveness and efficiency in care of chronic diseases. Public Health Reports, 119, 239-243.

Hootman, J., & Helmick, C. (2006). Projections of US prevalence of arthritis and associated activity limitations. Arthritis & Rheumatism, 54(1), 226-229.

Institute of Medicine, (2007). Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington DC: National Academies Press.

Jakobsson, U., & Halberg, I. (2002). Pain and quality of life among older people with rheumatoid arthritis and osteoarthritis: A literature review. Journal of Clinical Nursing, 11(4), 430 -443.

Kamwendo, K., Askenbom, M., & Wahlgren, C. (1999). Physical activity in the life of the patient with rheumatoid arthritis. Physiotherapy Research International, 4(4), 278-292.

Keefe, F. J., Smith, S. J., Buffington, A. L. H., Gibson, J., Studts, J. L., & Caldwell, D.S. (2002). Recent advances and future directions in the biopsychosocial assessment and treatment of arthritis. Journal of Consulting and Clinical Psychology, 70(3), 640 – 655.

Lambert, B., Butin, D., Moran, D., Zhao, S., Carr, B., Chen, C. et al. (2000). Arthritis care: comparison of physicians’ and patients’’ views.Seminars in Arthritis & Rheumatism, 30(2), 100-110.

Lawrence, R. C., Felson, D. T., Helmick, C. G., Arnold, L. M., Choi, H., Deyo, R. A., et al. (2008). Estimates of the prevalence of arthritis and other rheumatic conditions in the United States. Part II. Arthritis & Rheumatism, 58(1), 26-35.

Lin, H. B., Katon, W., Von Korff, M., Tang, L., Williams, J. W. Jr., Kroenke, K., et al. (2003). Effect of improving depression care on pain functional outcomes among older adults with arthritis. Journal of the American Medical Association, 290, 2428-2429.

Lorig, K., & Fries, J. (2000). The arthritis helpbook: A tested self-management program for coping with arthritis and fibromyalgia, 5th edition. Cambridge, MA: Perseus Books.

McDonald, K., Sundaram, V., Bravata, D., Lewis, R., Lin, N., Kraft, S., et al. (2007). Closing the quality gap: A critical analysis of quality improvement strategies. Vol 7. Care coordination. (AHRQ Publication No. 04(07)-0051-7.) Rockville, MD: Agency for Health Care Quality and Research.

Memel, P., Kirwan, J., Sharp, P., & Hehir, M. (2000). General Practitioners’ assessment of disability and anxiety as well as depression in their patients with osteoarthritis. British Journal of General Practice, 50, 645-648.

National Institute of Arthritis and Musculoskeletal and Skin Diseases, U.S. Department of Health and Human Services. (2006). Handout on health: Osteoarthritis. (USDS Publication No. 06-4617). Bethesda, MD: Author.

Owens, D. (2007). Care coordination. Volume 7. In K. Shojania, K. McDonald, R. Wachter, & D. Owens (Eds.), Closing the quality gap: A critical analysis of quality improvement strategies. Technical Review 9 (Prepared by the Stanford University-UCSF Evidence-based Practice Center under contract 290-02-0017). AHRQ Publication No. 04(07)-0051-7. Rockville, MD: Agency for Healthcare Research and Quality.

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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.

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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.

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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

Victoria M. Rizzo, PhD - Columbia University, School of Social Work
Jessica Seidman, MSW - Columbia University, School of Social Work.

Health Promotion

Synopsis

As the tsunami wave of older adults approaches between now and the year 2020, health promotion has become a topic of great importance in the United States and internationally. Despite the myths about aging and ageism in our society, many older adults are healthy and able. Nearly all adults aged 65 and over are likely to have several chronic health problems, but most of them are not disabled. In fact, many adults aged 65 and over lead productive lives while managing chronic illness. They work, volunteer, travel, exercise, etc. For this reason, it is important that our work with the aging population include a focus on health promotion and health maintenance, as well as on chronic disease, palliative care, substance abuse, and mental health.

In this module, we present an overview of the demographics and trends that influence the aging process of adults aged 65 years and older in the United States. Although these factors cannot be definitively identified as determinants of health outcomes, they represent some characteristics within American society that help to predict how well people age (World Health Organization [WHO], 2002). We also provide an overview of health promotion models in aging and discuss the role that social workers can play in health promotion for the aging population. Even though this module focuses on the healthy aging of the older population, it is important to note that these factors influence an individual’s health and quality of life throughout the life course.

SECTION 1: EPIDEMIOLOGY OF AGING & NEED FOR HEALTH PROMOTION

• Between 1900 and 1999, the population aged 65 and older grew from 3 million to 37 million (Federal Interagency Forum, 2008). Between 1900 and 2006, the population of people aged 85 and older increased from approximately 100,000 to 5.3 million.

Although the growth illustrated by these demographic trends is significant, it has been relatively slow compared with the increases projected to occur in the next 30 to 50 years (Centers for Disease Control [CDC] & The Merck Company Foundation [Merck], 2007). In 2000, the population aged 65 and older was approximately 35 million (12% of the total). By 2030, this older cohort’s size is expected to double and will represent roughly 20% of the total population—or one in every five people (Marshall & Altpeter, 2005). The CDC has forecasted that the increase in older citizens will begin to soar as the baby boomers enter this age bracket (CDC & Merck, 2007). By 2050, the number of baby boomers aged 85 years and older is expected to rise to roughly 21 million (Federal Interagency Forum, 2008). These projected increases in life expectancy can be attributed to improved medical care and an emphasis on disease prevention measures over the last century (CDC & Merck, 2007).

Gender and Marital Status

• Women represent roughly 58% of individuals aged 65 years and older, and among people aged 85 years and older, that percentage increases to approximately 68% (Federal Interagency Forum, 2008). Later in life, older men are more likely then older women to be married. For example, 78% of the men in the 65- to 74-year-old age group were married, whereas only 57% of the women in this age group were married.

Marital status has a large impact on an older person’s emotional and economic circumstances as well as accessibility to informal caregivers. Similarly, the composition of one’s household can be expected to influence one’s socioeconomic position. Although, in general, both women and men are less likely to have a living spouse as they increase in age, the women are three times more likely than the men to be widowed. Divorce and singlehood are comparatively low among women and men aged 85 years and older.

These factors must be considered when examining an older person’s overall well-being and the probability that the person will practice preventive health care and participate in behaviors that promote health.

Educational Attainment

• Educational attainment also has an impact on people’s access to higher earnings, which boosts their standard of living and well-being (Federal Interagency Forum, 2008).

The higher their level of education, the greater the likelihood that people will have the resources to exercise ample control over their lifestyle and health care choices and therefore have abundant opportunities to practice behaviors that foster better health outcomes. In the last 50 years, the number of older people with a high school diploma has increased 52%. In 2007, 25% of men and 15% of women had an undergraduate degree, and the gender gap related to achieving a college education is predicted to shrink in the coming years (Federal Interagency Forum, 2008).

Racial and Ethnic Diversity

•   In the 21st century, the culture and ethnicity of older adults in the U.S. population will become increasingly diverse.

Hispanic people make up the largest-growing segment of the older population, followed by Asians. In 2005, there were a recorded 2 million Hispanic older people in the country. By 2050, their number is expected to increase to 15 million. In contrast, from 2006 to 2050 the population of White non-Hispanic older is expected to drop by 20%—from 81% to 61% (Federal Interagency Forum, 2008).

Older adults may experience the effects of disparities in health status more than any other population group, especially those who are members of racial and ethnic minority groups (CDC & Merck, 2007). The general health status among members of these groups who are 65 years old and older falls behind that of members of nonminority groups. Some factors contributing to the gap in health care outcomes are a result of the prevalence of lower socioeconomic status among minority groups and the need of older people for ongoing care because of the greater probability that they will develop a chronic illness (CDC & Merck, 2007).

Cultural diversity is another factor involved in shaping the aging process. Cultural values and practices influence how society views older people and the aging process (WHO, 2002). An individual’s perceptions about the process will affect how receptive he or she is with regard to the importance of prevention, detection, and treatment (WHO, 2002). One example of the disparities in health care is that older members of racial and ethnic minority groups are immunized at lower rates than their White counterparts are. According to a recently released report (CDC & Merck, 2007), multiple factors have been tied to the disproportionate use of health care services among different population groups: for example, the level of health care awareness and access to health care providers. 

Health Issues

• Managing the needs of older adults in the United States is among the leading public health challenges of the 21st century.

Good health in the later years facilitates a quality of life that includes the optimum degree of independence and social engagement (Robinson, 2007). One primary and certainly achievable goal of healthy aging initiatives proposed by health care organizations is to increase the numbers of older people who live longer, high-quality, productive, and independent lives (CDC & Merck, 2007). The above-mentioned indicators affect an older person’s ability to practice healthy behaviors. Since the beginning of the 20th century, the levels of medical care and preventive practices have been major factors resulting in increased life expectancy. However, roughly 80% of older adults are living with at least one chronic condition (CDC & Merck, 2007).

More than one third of the deaths that occur in the general population of the United States are preventable (CDC & Merck, 2007). The following three behaviors alone contributed to nearly 35% of all deaths in 2000: smoking, poor diet, and physical inactivity. Furthermore, the cost of medical care for older people is three to five times higher than it is for younger people. By 2030, the cost of providing health care for people aged 65 years and older is expected to increase by 25% (CDC & Merck, 2007). However, adoption of healthy behaviors and access to regular health screenings could prevent many chronic conditions, help reduce disparities among different population groups, and, ultimately, reduce health care costs.

The large increase in the older population has resulted in the supreme challenge of meeting the consequential economic and social demands. In response to this increase plus the inevitability of some age-determined physiological decline, the adoption of strategies that promote health can aid in maintaining quality of life in later years (Nakasato & Carnes, 2006). Successful aging (also called “healthy aging” and “active aging”) is characterized by three main characteristics or actions: (1) low risk of disease and disease-related disability, (2) high mental and physical functioning, and (3) active engagement with life (Nakasato & Carnes, 2006).

The World Health Organization (2002) reported that the upsurge in societal costs related to the increase in populations of older people and their medical needs can be met by immediately adopting and implementing policies and programs based on “active ageing—the process of optimizing opportunities for health, participation, and security in order to enhance quality of life as people age” (p. 12). Between 2002 and 2025, the growth of older populations is likely to exceed that of the populations of children and young adults.

Myths Affecting Health Promotion in Older Age

• In American society, many myths prevail about older adults and the aging process. Older adults are assumed to be sick, demented, frail, weak, disabled, powerless, sexless, passive, isolated, discontented, and incapable of learning (Rowe & Kahn, 1998). Ageism is fueled by societal messages delivered by the media. To change society’s views of aging, the public must unlearn some deeply rooted misconceptions about older individuals.

The ability of older people to contribute actively to society depends on their well-being and quality of life. The majority of them lead active, fulfilling lives because of their good health status. To ensure that policy makers and the society continue to promote active aging, it is important to eliminate common myths about aging that can create barriers to the promotion of health (WHO, 1999). A few examples of these misguided myths appear below:

• Myth No. 1. The Majority of Older Adults Live in Developed Countries

The reality is that more than 60% of older people live in developing countries. Of an estimated 580 million older adults in the world, roughly 355 million live in developing countries (WHO, 1999). The World Health Organization (WHO) estimated that by 2020, the global older population would reach 1,000 million, and roughly 700 million of them would be living in developing countries. The WHO (1999) reports that as life expectancy has increased, worldwide fertility rates have declined. Note that the life expectancy in such countries as Nigeria, China, and India has increased dramatically over the last 58 years and is expected to continue rising. As citizens of an aging world it is necessary for the world’s societies to acknowledge older persons as a valuable resource and to combat ageism by collectively facilitating opportunities to involve older adults actively in this process. To achieve this goal, health care services not only must be available but also must include health promotion and encourage intergenerational solidarity.

• Myth No. 2. All Older People Are Similar

As a population, people aged 65 and older are not a homogeneous group. Their diversity is based on such factors as gender, ethnic or cultural background, composition of family and community, country of origin, type of living arrangements and environment, levels of education and income, degree of involvement and activity, level of skills, and types of social roles. All these factors affect an individual’s life experience and have a strong influence on his or her aging process (WHO, 1999).

Because health and level of activity in the later years are primarily determined by one’s life course of experiences, exposures, and actions, one’s choices for active living should begin early in life. Participating in family and community life, eating well-balanced meals, being physically active, and avoiding unhealthy behaviors can promote more successful aging.

Participation of older adults in daily activities can range from volunteer or paid work to physical fitness activities to meaningful hobbies. Roughly 2 million children in the United States are cared for by their grandparents, and an estimated 1.2 million of these children live with their grandparents (WHO, 1999). This means that the grand parents provide the care that parents would provide because they aren’t available. Some grandparents regularly perform parenting responsibilities for their grandchildren. All individuals age within the context of their surroundings which include family, friends, and community. The ability of older people to partake of and enjoy life depends on the risks and opportunities available to them throughout their lives and on the support network that surrounds them (WHO, 2002).

• Myth No. 3. The Aging Process Is the Same for Men and Women

As a result of differences in gender roles and responsibilities, life expectancy, and biological characteristics, the aging process is different for men and women. An examination of mortality and morbidity in the later years reveals that older women live longer than their male counterparts, experience different chronic conditions, and are at higher risk for functional limitations (WHO, 1999). In addition, they tend to report a greater need for help with personal care and the activities of daily living than older men do.

Because women make up the majority of the aging population (Robinson, 2007), one particular area of concern to society is the ability to meet women’s increasing requirements for health care and long-term care as they age. As a result of their longer life expectancy, they are more likely than their male counterparts to be widowed and to lack a significant other who can be their primary caregiver (WHO, 1999). Therefore, more women are dependent on formal care services provided either in the home or in long-term health care facilities.

Men are generally at higher risk than women are for heart disease and stroke, although the higher prevalence of these diseases among men should not negate the fact that women also are at risk (WHO, 2002) for these and other illnesses, such as cancer, chronic lower respiratory diseases, and Alzheimer’s disease. Another common illness among older women is osteoporosis, the signs and symptoms of which are not visible, thus making the disease a silent threat for increased disability and decreased quality of life (Robinson, 2007).

• Myth No. 4. Older People Are Frail

Throughout the 20th century, the patterns of illness in the aging population have changed dramatically. Historically, acute infectious diseases were the most prevalent causes of death. Today, however, chronic illnesses that can be managed over time are seen more frequently in the older population (Rowe & Kahn, 1998). This shift in the nature of older individuals’ health needs has led to changes in the degree of disability caused by chronic illnesses. Manton, Gu, and Lamb (2006) reported a significant decrease in the occurrence of chronic disability among older adults between 1982 and 2005. In 1982, 73.5% of people aged 65 years and older identified themselves as nondisabled, whereas 81% did so in 2005. According to Manton and coauthors, major long-term improvements in the ratio of activity level to total life expectancy are projected for people aged 85 and older. If current trends persist, the number of severely disabled individuals should decline 50% by the year 2050 (WHO, 1999).

The trend in care services for older adults has been shifting from residential and housing services that focus on maintenance to community-based services that emphasize treatment and rehabilitation (Robinson, 2007). Today, the focus on illness is how it affects a person’s ability to function within the community. As Robinson pointed out, many older adults can function at a high level. For example, they can be providers as well as recipients of care (WHO, 1999).

According to the WHO (2002), in 2001 roughly 20% of older adults worldwide received formal care services. Approximately two thirds of those services were home based and included, but were not limited to, visiting nurses and home-delivered meals. To maintain older adults’ independence and promote their well-being, rehabilitative services, physical environments adapted to their needs, and education regarding healthy lifestyles must be available to them. It is virtually never too late to adopt healthy behaviors, such as smoking cessation, proper diet, and physical activity that can improve a person’s quality of life (Rowe & Kahn, 1998).

In 1991 the Department of Health and Human Services released Healthy People 2000. In 2000 it published Healthy People 2010 in response to evidence that adopting healthy behaviors at any stage of life is beneficial for well-being (CDC & Merck, 2007). To improve the health of Americans nationwide, the two reports established specific health goals for communities. The activities put forth in Healthy People 2010 are generally age-specific. When reviewed as a group, the list contains 500 health objectives for Americans to accomplish by 2010. When viewed as a whole, the suggested programs support a lifelong approach to healthy living.

Using a nationally administered survey, all 50 states will be evaluated regarding the following areas targeted in the 2010 report: health status, health behaviors, preventive care, health screening, and injuries (CDC & Merck, 2007). For example, the preventive care measures being targeted include flu and pneumonia vaccines, mammograms, colorectal cancer screening, and cholesterol checks.

• Myth No. 5. Older People Do Not Contribute to Society

Valuing older people for their ongoing roles and participation in their families, communities, and economies is important. Like everyone else, the less older people are challenged, the less they can achieve. The elimination of age discrimination will require an emphasis on programming that is flexible and offers lifelong opportunities for learning. Therefore, educational facilities and institutions should adjust their curriculum to accommodate differences between older and younger people regarding the pace at which they learn and their ability to retain information (Rowe & Kahn, 1998).

Longitudinal studies focusing on promotion of health have highlighted how healthy behaviors have a direct impact on the length and quality of a person’s life. In the context of the myth that older adults do not contribute to society, deriving a constant sense of purpose or involvement by participating in society is a crucial and central aim of successful aging. The Administration on Aging (2008) points out that older adults are actively engaged in their communities both formally and informally by providing millions of hours of volunteer, community, and civic service. They not only contribute their spare time, but impart knowledge of culture, values, and life experiences to younger generations as well. As older adults live longer, healthier lives, they will be able to continue contributing their valuable knowledge to society. Regular activity, along with a stable support system and confidence in their ability to handle what life has to offer, helps them to maintain good health (Rowe & Kahn, 1998).

Older members of communities are not only invested in their own network of family and friends; they also are interested in and care about the greater community. For example, Senior Corps (Research Triangle Institute [RTI] International, 2003)—a program developed by the Corporation for National and Community Service—has connected roughly 500,000 senior volunteers 55 years and older with opportunities for meaningful unpaid work. The organization’s offerings include the Retired Senior Volunteer Program (or RSVP), the Foster Grandparent Program, and the Senior Companion program (RTI International, 2003). Participants in these programs have devoted more than 1 billion hours to communities nationwide.

Another volunteer program, Seniors for Schools, shares their leadership and organizational skills with the greater community. The program’s mission is to provide literacy services to children in primary schools across the United States (Project STAR, 2001). In 2000, 486 volunteers served 5,462 students. Programs such as these demonstrate the willingness and ability of older individuals to engage with people of all ages in their communities. As their quality of life and life expectancy increase, the number of programs available to the rapidly increasing population of older people will increase rapidly as well.

References

Administration on Aging. (2008). Promoting healthy lifestyles. Retrieved March 2, 2008, from Washington, DC: Author.

Centers for Disease Control (CDC) & The Merck Company Foundation. (2007). The state of aging and health in America.Whitehouse Station, NJ: The Merck Company Foundation. Retrieved February 8, 2008, from http://www.cdc.gov/aging

Federal Interagency Forum on Aging Related Statistics. (2008). Older Americans update 2008:Key Indicators of Well-being.Retrieved March 18, 2008, from http://www.agingstats.gov/agingstatsdotnet/main_site/default.aspx

Manton, K. G., Gu, X., & Lamb, V. L. (2006). Change in chronic disability from 1982 to 2004/2005 as measured by long-term changes in function and health in the U.S. elderly population. Proceedings of the National Academy of Sciences, 103, 18374-18379.

Marshall, V. W., & Altpeter, M. (2005). Cultivating social work leadership in health promotion and aging: Strategies for active aging interventions. Health & Social Work, 30(2), 135-144.

Nakasato, Y. R., & Carnes, B. A. (2006). Health promotion in older adults: Promoting successful aging in primary care settings.Geriatrics, 61(4), 27-32.

Research Triangle Institute International. (2003). Final report of the senior companion quality of care evaluation. Report prepared for the Corporation for National and Community Service. Research Triangle Park, NC: Author. Retrieved May 6, 2008, from http://www.seniorcorps.gov/pdf/final_scp_report.pdf

Robinson, K. (2007). Trends in health status and health care use among older women. Aging trends. Hyattsville, MD: National Center for Health Statistics. Retrieved March 18, 2008, from http://www.cdc.gov/nchs/data/ahcd/agingtrends/07olderwomen.pdf

Rowe, J. W., & Kahn, R. L. (1998). Successful aging. New York: Pantheon Books.

Project STAR. (2001). Seniors for Schools evaluation results 1999-2000 school year. San Mateo, CA: Author. Retrieved May 6, 2008.

World Health Organisation (WHO). (1999). Ageing: Exploding the myths. Geneva, Switzerland: Author. Retrieved February 5, 2008, from http://libdoc.who.int/hq/1999/WHO_HSC_AHE_99.1.pdf

WHO. (2002). Active ageing: A policy framework. Geneva, Switzerland: Author. Retrieved February 5, 2008, from http://whqlibdoc.who.int/hq/2002/WHO_NMH_NPH_02.8.pdf

Document Date: September 11, 2009

Victoria M. Rizzo, PhD - Columbia University, School of Social Work
Jessica Seidman, MSW - Columbia University, School of Social Work.

Health Promotion & Aging

Synopsis

Until the 1980s, no established framework for healthy aging existed. Furthermore, Rowe and Kahn (1998) remarked that a conceptual framework for effectively guiding an approach to healthy aging was missing until the 1990s. They suggested that development of such a framework was challenged by commonly held misconceptions including, but not limited to, the beliefs that illness and an inactive lifestyle were normal parts of the aging process. These misconceptions resulted in insufficient attention to the impact of life-style and psychosocial factors on the welfare of people aged 65 and older. In this section, we provide a history of the development of a framework for health promotion models in aging. We also discuss the implementation of these frameworks within communities committed to health aging.

The History of Health Promotion Models

Several significant historical events in the second half of the 20th century helped to lay the groundwork for development of a conceptual framework for the promotion of health.

• 1950-1975. A link between human behavior and chronic illness was recognized (Breslow, 1999). The relationship between individual life-style choices concerning nutrition, smoking, and alcohol consumption and the probability of chronic illness was established. The idea of health promotion was first conceived by health educators, who used the term primarily to refer to interventions aimed at modifying human behavior.
• 1979. The U.S. Public Health Service released an official document that declared a corresponding primarily behavioral view of health promotion (Breslow, 1999). The document described health promotion as a framework for establishing individual and community measures that supported the development of healthy life-styles and enhanced the quality of life. The report stressed the importance of individual motivation and responsibility to achieve wellness and referred to health as synonymous with “well-being” and referred to ill health as a consequence of individual life-style choices.
• 1984. A shift from a disease/disability framework for aging to a positive aging framework occurred. A longitudinal study supported by the John D. and Catherine T. MacArthur Foundation proved to be ground-breaking research on aging (Rowe & Kahn, 1998). Conducted by a group of physiologists, sociologists, psychologists, and physicians who specialized in the field of aging, the goal was to shift the focus from disability, disease, and chronology to the positive aspects of aging—the genetic, biomedical, behavioral, and social factors that influence a person’s capacity later in life. This shift in perspective to successful aging was subsequently discussed in many hundreds of journal articles, the first of which appeared in Science in 1987. Since its publication, the study has been the main topic of numerous national and international conferences, research groups, and annual organizational meetings such as that of the Gerontological Society of America. The study’s greatest accomplishment was providing an important framework for future initiatives dedicated to healthy aging.
• 1986. The World Health Organization introduced their health promotion framework. The first international conference on health promotion was the Ottawa Charter for Health Promotion, sponsored by the World Health Organization (WHO) (2008). During the conference, health promotion was defined as an approach that facilitates increased individual control over one’s own health to improve one’s health status. The WHO’s health promotion framework encompasses coordinated action from all levels of society. According to the charter, the framework should include national, state, and local governments; the health, social, and economic sectors; nongovernmental and voluntary organizations; local authorities; industry; and the media. In addition to macrosystems perspectives, the framework incorporates individuals and their families on the microsystems level. The following were among the conditions identified as necessary for health promotion to occur: peace, shelter, education, food, income, a stable ecosystem, sustainable resources, social justice, and equity.

Development of a Health Promotion Framework

• In the latter half of the 20th century, the concept of health promotion progressively developed into a framework in response to the reality that people were living longer and with a better quality of life and freedom from noncommunicable diseases than ever before (Breslow, 1999).

Near the end of the century, “health promotion was defined as the process of enabling people to increase control over, and to improve, their health” (Marshall & Altpeter, 2005, p. 136). Marshall and Altpeter explained that to achieve a state of overall well-being, people should be able to realize their aspirations, meet their needs, and adapt to a changing environment.

Health promotion represents the shift from an exclusive biomedical focus that places the responsibility for the care of patients on physicians to a framework that emphasizes individuals’ ongoing participation in preventive health care practices (Hooyman & Kiyak, 2005). Because poor health interferes with a person’s capacity to live as fully as possible, the focus of health promotion is the prevention of acute and chronic illnesses (Breslow, 1999).

To provide health education, many campaigns and outreach efforts that promote health have focused on the individual. However, Marshall and Altpeter (2005) suggested that health promotion strategies founded on the ecological approach to public health might be more successful, because this approach concentrates on activities and exchanges across all levels of society—micro, mezzo, and macro—and because health promotion is multidimensional in nature. In addition, the ecological approach addresses the consequences of the increase in life expectancy in the United States, which include a demand for an improved quality of life, a greater need for informal and formal caregiving, and greater financial stress on the health care system (Breslow, 1999). The following are terms developed and commonly used by health care organizations:

• Successful aging. According to Marshall and Altepeter (2005), Rowe and Kahn (1998) established the framework for health promotion. This framework for successful aging includes avoidance of disease, maintenance of high cognitive and physical functioning, and ongoing engagement with life. It has been used as a foundation upon which to develop other models that promote health.
• Healthy aging. The concept of healthy aging refers to the development and maintenance of physical, mental, and social abilities in the older population (Centers for Disease Control [CDC], 2008). This framework is likely to be most successful in communities that facilitate health promotion and take actions to prevent or reduce the effects of acute and chronic diseases on a person’s performance of activities of daily living (Marshall & Altpeter, 2005).
• Active aging. In the late 1990s, the WHO (2002) coined the term active aging based on the concept of healthy aging. However, active aging conveys a more inclusive definition that goes beyond the principles of health care to include the human rights of older adults and the United Nations’ principles of independence, participation, dignity, care, and self-fulfillment. The term “active” represents one’s participation in social, economic, cultural, spiritual, and civic affairs throughout life. The WHO (2002) conceptualization of active aging is based on three concepts: participation in life, meaning the family and the community; health, meaning health promotion and activities to maintain an optimal health status; and security, including financial, community, and family security.

Throughout the second half of the 20th century, expansion of health promotion frameworks was ongoing. Each successive version of health promotion frameworks was built on earlier frameworks. Generally, however, all the terms used in these frameworks applied a life-span perspective for prevention programs and practices focused on physical, social, and mental well-being. The main goal of health promotion was to reduce the incidence of disabling chronic diseases in the older population (WHO, 2002). In addition to prolonging life and preventing disease, health promotion programs gradually expanded to include enhancing the independence and general quality of life of older adults (Hooyman & Kiyak, 2005). Health promotion strategies are now applicable to all older people, including those who are frail or disabled or in need of support.

Although many frameworks for the promotion of health exist, the focus here is the framework developed most recently—the Alberta Rose model, developed in Alberta in Canada (KPMG Consulting, 2002). The model integrates elements of earlier health promotion strategies, incorporating primary and secondary prevention as part of health promotion. It might also be termed a wellness model. The model considers four main goals toward achieving health aging and wellness: (1) promoting health and preventing disease and injury, (2) optimizing mental and physical function, (3) managing chronic conditions, and (4) engaging with life. These four components of the model result in healthy aging. Table 1 summarizes the 4 models of health promotion that are used in the literature.

The Four Main Goals of the Alberta Rose Model

The goals encompassing the four main components of wellness that contribute to the promotion of health are described in more detail below (KPMG Consulting, 2002).

• Goal No. 1. Promoting health and preventing disease and injury. According to the model, this goal can be achieved by increasing a person’s control over his or her circumstances, the result of which is improved health. Helping individuals, families, and communities make healthy choices and foster healthy and supportive environments facilitates the practice of health promotion on all levels of society. The area of concentration with regard to this goal consists of prevention programs that address good dietary habits, smoking cessation, early detection of chronic illness, access to vaccinations, and avoidance of injuries from falls.   
• Goal No. 2. Optimizing mental and physical function. The model suggests that communities and experts can facilitate a person’s ability to carry out the routines of daily living and thus enable the person to remain within the community as independently as possible. The area of concentration with regard to this goal consists of self-care, support systems, and team approaches to managing chronic conditions.
• Goal No. 3. Managing chronic conditions. The model suggests that by providing guidance regarding self-care and using collaborative approaches, people with chronic conditions related to injuries or diseases can effectively manage those conditions. The area of concentration with regard to this goal consists of programs focused on the physical and mental functioning of members of the community by addressing depression, addictions, and incorporation of active living practices.
• Goal No. 4. Engaging with life. The model promotes the development of meaningful relationships and involvement in rewarding and meaningful activities. The area of concentration with regard to this goal consists of relationship-building to improve social interaction and participation in the community.

This conceptual model incorporates the different levels of society and encompasses macro, mezzo, and micro perspectives. It focuses on the health of the population, the health care systems, and the availability of partnerships that are capable of developing health strategies. Furthermore, it connects with the individual by incorporating some of social work’s core values, including dignity, autonomy, participation, fairness, security, and recognizing and building on strengths and capacities (KMPG, 2002). The strategic framework for healthy aging proposed by the Alberta Rose model, which targets people 35 years of age and older and stresses the importance of their lifelong involvement in and commitment to practicing healthy aging, takes into account health determinants, health strategies, and partnerships. Several determinants of well-being relate to factors discussed earlier: a person’s income, social and educational status, social support networks, employment, work environment, gender, and culture. The model indicates that all these factors have an impact on a population’s health status. The population health strategies represent five crucial methods of promoting health: developing policy, building supportive environments, enriching community action, expanding individual skills, and enhancing awareness of the framework among health services (KPMG, 2002). Finally, to overcome the challenges resulting from the determinants of health, partnerships must be developed among all levels of the community. Because the model includes both the determinants of health and the health care system, it incorporates Marshall and Altpeter’s ecological perspective (Marshall & Altpeter, 2005).

Implementation of the Health Promotion Framework

The application of health promotion to the older population is a relatively recent endeavor. The latest attempt to apply this framework at the national level in the United States was through the Healthy People 2010 initiative (U.S. Department of Health and Human Services [USDHHS], 2000), a successor of the Healthy People 2000 initiative (National Center on Health Statistics, 2001). That initiative implemented the health promotion model by targeting healthy behaviors, such as the following, for the American population:

• Physical activity. The target set by Healthy People 2010 is for 80% of the population older than 64 years of age to spend their leisure time being physically active. If carried out regularly, physical activity is a major contributor to healthy aging because it helps to prevent or control many health problems. Such activity is commonly recommended to manage high blood pressure, depression, obesity, and diabetes, and strength training can aid in decreasing the pain of arthritis, improving balance, and reducing the risk of falls (CDC & The Merck Company Foundation [Merck], 2007). 
•  Nutrition. According to a report on the health of the nation’s older population (CDC & Merck, 2007), the nutritional targets for the year 2010 are divided into different goals for the consumption of fruits and vegetables. Diets rich in vitamins and fiber reduce the risk for certain cancers and chronic diseases. In relation to other age groups, older adults eat, on average, more than five fruits and vegetables daily, which bodes well for this age group because diets rich in fruits and vegetables can reduce the risk for some chronic diseases (i.e., diabetes) and some forms of cancer (CDC & Merck, 2007). The current national consumption of fruits and vegetables is 30% below the objectives for 2010 which are 1) at least 75% of people aged 2 years and older will consume two daily servings of fruit, and 2) at least 50% of all people aged 2 years and older will consume three servings of vegetables.
• Obesity. One aim of Healthy People 2010 is to reduce the percentage of obese people older than 64 years of age to 15% by the year 2010 (USDHHS, 2000). A body mass index of 30 or more increases health risks and threatens a person’s quality of life. The health risks associated with obesity include chronic conditions, arthritis, and cancers that are more common among older adults. In addition, obesity can result in limited activity, depression, or feelings of hopelessness (CDC & Merck, 2007).

The Re-Aim Framework

Once health promotion programs are developed, implemented, and tested for efficacy and efficiency in rigorous scientific studies, targeting the areas outlined in the healthy promotion framework discussed above, the next task is to translate these programs into formats appropriate for various communities. The Re-Aim framework can be used to consider the strengths and weaknesses of health promotion programs to guide their implementation in specific communities (Glasgow, Vogt, & Boles, 1999). This framework includes the following dimensions:

1. Reach refers to the rate of participation in programs in the community and the characteristics of people who participate in health promotion programs versus non-participants.
2. Efficacy relates to the impact that an intervention has on the specified health outcomes that the community has identified for improvement.
3. Adoption refers to the number of, and level of commitment of, agencies and the community to provide health promotion programs targeted to the specified outcomes.
4. Implementation refers to the quality and integrity of the programs that are provided in the real world setting.
5. Maintenance occurs at the individual and systems level. At the individual level, it refers to how committed individuals are to making behavior changes to promote health. At the systems level, it refers to how committed communities and agencies are to providing programs to attain the health outcomes they have identified as important for them.

The Re-Aim framework is a powerful tool for program planners and macro-level social workers to utilize when identifying health promotion programs for their communities to adopt for implementation. The framework allows for evaluation of the multiple dimensions that can influence the success of health promotion programs for aging individuals (Glasgow, Vogt, & Boles, 1999).

References

Breslow, L. (1999). From disease prevention to health promotion. Journal of the American Medical Association 281, 1030-1033. Retrieved on March 18, 2008, from www.jama.com

Centers for Disease Control (CDC). (2008). Healthy aging: Preserving function & improving quality of life among older adults. Atlanta, GA: Author. Retrieved on December 17, 2008, from http://www.cdc.gov?nccdphp/publications/aag/pdf/healthy_aging.pdf

CDC & The Merck Company Foundation. (2007). The state of aging and health in America. Whitehouse Station, NJ: The Merck Company Foundation. Retrieved February 8, 2008, from http://www.cdc.gov/aging

Glasgow, R., Vogt, T., & Boles, S. (1999). Evaluating the public health impact of health promotion interventions: The RE-AIM framework. American Journal of Public Health, 89(9), 1322-1327.

Hooyman, N. R., & Kiyak, H. A. (2005). Social gerontology: A multi-disciplinary perspective (7th ed.). New York: Pearson Education, Inc.

KPMG Consulting. (2002). Alberta’s health aging & seniors wellness strategic framework 2002-2012. Edmonton, AB: Alberta Health and Wellness. Retrieved March 18, 2008.

Marshall, V. W., & Altpeter, M. (2005). Cultivating social work leadership in health promotion and aging: Strategies for active aging interventions. Health & Social Work, 30(2), 135-144.

National Center on Health Statistics, U.S. Public Health Service. (2001). Healthy People 2000 Final Review. Hyattsville, MD: Author. Retrieved January 5, 2009, from www.cdc.gov/nchs/data/hp2000/hp2k01.pdf

Rowe, J. W., & Kahn, R. L. (1998). Successful aging. New York: Pantheon Books.

U.S. Department of Health and Human Services. (2000). Healthy People 2010. 2nd ed. With Understanding and Improving Health and Objectives for Improving Health. 2 volumes. Washington D.C.: U.S. Government Printing Office Retrieved January 5, 2009.

World Health organization (WHO). (2002). Active ageing: A policy framework. Geneva, Switzerland: Author. Retrieved February 5, 2008, from http://whqlibdoc.who.int/hq/2002/WHO_NMH_NPH_02.8.pdf

WHO. (2008). The Ottawa Charter for Health Promotion. Geneva, Switzerland: Author. Retrieved February 20, 2008, from http://www.who.int/healthpromotion/conferences/previous/ottawa/en/
 
 Document Date: September 11, 2009

Victoria M. Rizzo, PhD - Columbia University, School of Social Work
Jessica Seidman, MSW - Columbia University, School of Social Work.

The Role of Social Work

Synopsis

The study of successful aging supported by the MacArthur Foundation provided many important findings and paved the way for future progress in the field of geriatrics and health promotion (Rowe & Kahn, 1998). Many outcomes of the study suggested that collaborative work among the various disciplines involved in health care (e.g., physicians, nurses, psychologists, and social workers) is necessary to work most effectively with people aged 65 and older. According to the study, each discipline, independently, is inadequately prepared to address the older population’s needs. In response to this finding, the foundation promoted studies involving collaboration of experts from diverse helping professions to achieve an authentic interdisciplinary science (Rowe & Kahn, 1998).

To foster the skills needed for effective team care, The John A. Hartford Foundation supported the development of programs that called for geriatric interdisciplinary team training (GITT) for students in nursing, social work, and medicine. In addition they supported the development of a national model to forge partnerships between educational institutions and providers of geriatric care for the purpose of designing curricula for use in training interdisciplinary teams and for testing new models of training for practicing professionals (Fulmer et al., 2005).

Although these programs have resulted in some changes in the attitudes and skills of team members, few changes have occurred with regard to care planning and team dynamics (Institute of Medicine [IOM], 2008, Fulmer et al., 2005). Consequently, further research is needed to determine which methods of training are most effective for imparting the knowledge and skills necessary to work effectively as members of a team and for demonstrating how such training can affect patterns of practice with older adults (Cooper & Fishman, 2003; Hall & Weaver, 2001; Remington, Foulk, & Williams, 2006).

During the 20th century, social workers increasingly became members of multidisciplinary public health teams and developed skills in promoting competent teams in health care institutions (Marshall & Altpeter, 2005). These collaborative teams drew on models of health promotion and disease prevention to meet the needs of contemporary health-related social issues throughout the life-span. In the field of gerontology, health promotion was applied to chronic illnesses, including, but not limited to, cancer and Alzheimer’s. In the 21st century, multidisciplinary teams strive to implement a broad range of health promotion programs in response to the growing older population and the inevitable increase in the health care needs of this population (Cooper, 2003; Fulmer, 2005).

Because the social work profession is fundamentally committed to individual- and community-level evidence-based interventions, such as individual and family development, community organizing, and advocacy, its interventions incorporate the skills and values necessary to implement effective health promoting practices at multiple systemic levels. For example, using education and counseling, social workers, on an individual basis, can help to address diseases, such as obesity, that are so prevalent in American society.

The Social Worker’s Role with Older Adults

• Social workers can help older persons remain mobile and independent, thus increasing the quality of life not only of the individuals but of their families as well.

In addition, social workers are uniquely positioned to promote health, good nutrition, and wellness among individuals and families on the programmatic, organizational, and community-advocacy levels. Alone or with other members of interdisciplinary teams, they can advocate for implementation of practices and programs within institutional and residential settings that promote health. Finally, they can offer their expertise and support to larger local and national community initiatives that encourage active aging.

Marshall and Altpeter (2005) recommended eight ways that social workers can take the lead in creating communities engaged in promoting health among older adults. The following represent a modification of these strategies.

• Provide assessment, counseling, and referral services regarding health promotion in clinical and multidisciplinary settings. Social workers can help to ensure that members of multidisciplinary teams engage older adults in conversations related to healthy living. Also, they can ensure that programs are adapted to fit an individual individual’s interests and inclination to modify his or her behavior (Center for the Advancement of Health, 2006) and that individuals are referred to community programs.
• Enhance information sharing and research alliances. Social workers and other health professionals (i.e., nurses and public health workers) can implement and test interventions intended to improve health and quality of life among older adults to ensure that the models are implemented effectively and that programs are meeting their goals (Centers for Disease Control and Prevention [CDC], 2008).
• Improve the competence of communities to develop strategies for helping older adults define and reach their goals. Social workers can provide mentoring for seniors individually and in groups to help them improve their health literacy and level of practicing healthy behaviors. They can review and update health care reimbursement structures for activities focused on health promotion. They can facilitate the development of volunteer opportunities and reach out to elders to participate in these programs.
• Participate in community management. Social workers can be actively involved in social planning to ensure a safe and accessible community environment by working to reduce potential barriers to the promotion of health and healthy aging in the community’s institutions, programs, and neighborhoods: e.g., inadequate outside lighting, poor maintenance of paths and roads, high fees at local community centers and other programs, nonfunctional and non-inclusive program schedules, and poorly timed traffic lights.
• Advocate regarding development and maintenance of community infrastructures. Social workers can promote communities that accommodate older adults safely by working to adapt the environment to their needs, mobilizing them to be more socially engaged, and eliminating social and environmental barriers. Among their efforts should be advocacy regarding efficient transportation systems, legible maps and schedules, and reduced speed limits for vehicles.
• Encourage better use of available resources. Social workers can use their own workplace to increase their older individuals’ physical activity by posting signs that encourage walking and climbing the stairs and by providing exercise facilities and time to use them.
• Develop partnerships among key players and stakeholders in the community. Social workers can engage and bring together agencies, such as housing, recreation, and disability services, that traditionally have not been engaged in such partnerships. For example, recreational activities and services for the disabled could be offered on site at senior housing complexes.
• Promote economic developments that will lead to better health practices among the general population.Social workers can help to promote health by advocating for the development of employment opportunities that will improve the socioeconomic status of all segments of society and thus their access to health and preventive services. As noted in the first section of the module, poverty and unemployment are linked to poor levels of physical activity and health throughout the life-span.

Social Work Models for Promoting Health

• Social workers play an important role in encouraging older individuals to adopt healthy behaviors and to integrate health promotion into their lives.

Examples of challenges that older adults face are lack of knowledge and motivation, insufficient support from family and peers, inaccessibility of available programs, and policies that promote unhealthy behaviors.

Educational programs have proven to be helpful in providing older adults with skills and knowledge about how to make healthier life-style choices. Person-centered programs that work one-on-one with individuals to set goals and make decisions that enhance their health and quality of life also yielded positive results. However, the information individuals receive must not only stress the importance of adopting healthy behaviors but also include information that will motivate them to change their behavior. According to the Center for the Advancement of Health (2006), physicians who counsel their older patients about health, include the patients in developing a personalized health plan, and follow-up regarding their progress have reported better outcomes. According to the center’s report, motivational techniques, including self-monitoring, personal communication with health care providers, and multiple channels of communication, are necessary to encourage healthy habits and achieve long-term results. In addition, the report mentions two key factors leading to improved use of healthy behaviors: ongoing reminders and support. Social workers’ knowledge and skills in intervening at the individual, environmental, and community levels, and their capacity to identify and build on an individual’s strengths makes them ideal professionals to design and implement health-promoting strategies that incorporate these two critical factors.

Programs focused on nutrition and physical activity are important examples of interventions that social workers can use to promote the health of older adults. Nutritional programs represent micro-level methods, whereas programs that promote physical activity often require community-level efforts to improve individuals’ health.

Nutrition Model

The nutritional health of older people is important (Johnson, 2004; Wellman, 2004). Consequently, when completing a nutritional assessment, the social worker needs to examine the individual’s food consumption, medical history, medications, financial circumstances, mobility, and accessibility to community institutions (Center for the Advancement of Health, 2006). Evidence-based support groups and educational programs provide older people with hands-on experience with how to adjust their eating habits. Other effective interventions include delivery of nutritious meals to individuals who are disabled, homebound, and economically disadvantaged.

Before developing programs on the basis of individuals’ needs, however, the social worker must take into account their readiness to change their nutritional behavior. In addition, an individual’s cultural identity is a highly relevant factor because ethnicity and tradition, including attitudes’ about what foods are appropriate and beliefs about the healing properties of foods, can heavily influence a person’s eating habits, Thus, the social worker must be culturally sensitive and seek out culturally appropriate options encouraging an individual to change dietary behavior (Center for the Advancement of Health, 2006; Johnson & Smith, 2002). Indeed, individuals may be unaware of ingredients that adversely affect their health and need information as to how they can modify the ingredients to improve the food’s nutritional value yet adhere to important cultural and social traditions.

Malnutrition in the older population increases health care costs, whereas a diet that improves health and promotes more rapid recovery from illness reduces the use of medical services and related costs to society (Wellman, 2004). Dr. Wellman proposed the following ways that families, friends, and social workers can help older adults improve their nutritional intake and overall health.

1. Dine and interact with older relatives or other older members of the community, engage them in conversations related to their life experiences, feelings about their needs and pleasures, and their opinions about events.
2. Deliver easy-to make or ready-to-eat meals to their homes; help them to organize weekly meals by applying a label to each container that identifies the contents as breakfast, lunch, or dinner; or make friendly telephone calls to remind them about nutritional needs, provide support, and express interest in their self care.
3. Provide them with a microwave oven to simplify preparation, with gifts of food, and with help in arranging dental appointments.
4. Advocate for those admitted to acute care facilities regarding provision of effective services, checking of body mass, helping at meal times, and preparing for discharge.

Physical Activity Model

The current literature provides evidence that regular moderate exercise fosters strength, energy, and coordination; reduces the risk of falls and fractures; heightens mood; and relieves symptoms of depression. Despite the evidence regarding the virtues of physical activity, however, the percentage of older people who lead physically active lives is low (CDC, 2007). This section provides examples of community and organizational programs focused on increasing the level of physical activity among older adults. Social workers are integral members of the partnerships that design and implement these programs at the community level.

A program titled “The National Blueprint: Increasing Physical Activity Among Adults Age 50 and Older” (CDC, 2007) is an example of a collaborative effort of national foundations, government agencies, and other organizations devoted to health care and aging (Center for the Advancement of Health, 2006). Some of the organizations involved include AARP, the American College of Sports Medicine, the American Geriatrics Society, the Centers for Disease Control and Prevention, the National Council on Aging, the National Institute on Aging, and the Robert Wood Johnson Foundation.

The National Blueprint details the importance of physical activity, outlines the barriers older adults face and proposes recommendations for overcoming those barriers. In 2002, the collaborating organizations identified 18 strategies designed to increase physical activity among the population aged 65 and older and designated leading organizations as having the responsibility to implement the strategies The implementation was accomplished by developing programs targeted at both the individual and organizational levels for the clinicians who would be responsible for carrying out the programs. Programs targeted at the organizational level conduct marketing campaigns and research, whereas programs targeted at the individual level develop guides concerning effective intervention techniques, feedback, and information-sharing tools.

An example of a community-level program is the Building Healthy Communities for Active Aging (Environmental Protection Agency [EPA], 2007), which organized a steering committee assigned the job of creating a document outlining 10 strategies designed to help communities successfully adapt community techniques of encouraging older adults to become more physically active. The steering committee believes that active aging is a result of including both structured and unstructured activities in an older person’s life-style (EPA, 2007). Therefore, communities need to facilitate the availability of structured programs and devise ways to encourage self-directed activities, such as walking, biking, and using fitness trails.

The following strategies are listed in the Environmental Protection Agency’s (EPA’s) proposal for community-level interventions that promote physical activity among the older population.

1. Create a community goal statement designed to improve levels of physical activity among seniors (EPA, 2007). The necessary steps are to identify, clarify, set targets for, and measure the community goals. On its Web site (www.healthyagingprograms.com), the National Council on Aging (2004) identifies safe, effective fitness programs for people aged 50 and older.
2. Form a community coalition or advisory unit composed of representatives from different community organizations to develop programs focused on increasing older adults’ opportunities for physical activity(EPA, 2007). Funded by the Robert Wood Johnson Foundation, the Community Partnerships for Older Adults Web site (http://www.rwjf.org/en/library/research/2011/12/community-partnerships-for-older-adults.html) provides excellent information regarding the development of community coalitions to promote healthy aging programs.
3. Assess the community’s needs regarding physical activity programs for older adults and the opportunities available to establish a program that meets those needs (EPA, 2007). Accurate information about physical activity among the older members of a community lays the foundation for strategies for meeting the community’s goals. The EPA’s Building Healthy Communities for Active Aging program suggests using health indicators, such as rates of morbidity, mortality, falls, obesity; activity level; participation in activity programs; and outdoor and organizational community resources.
4. Evaluate the accessibility and availability of the community’s physical activity programs for older adults. To determine programs’ effectiveness, the EPA’s Building Healthy Communities program inquires about the programs’ characteristics: number of activities designed for older adults, location (concentrated in certain districts or more widely distributed), accessibility, and quality of transportation. The American Society on Aging (ASA) (2002) has developed evaluation questions, indicators, and data sources that can be used for community-based physical activity programs. These are available on the ASA Web site at: www.asaging.org/CDC/module5/phase5/phase5_3.cfm. ASA’s Blueprint for Health Promotion, of which the evaluation materials are a component, is a comprehensive report that includes chapters about changing behavior, creating health promotion campaigns, working with mass media, creating culturally sensitive and effective health promotion materials, and evaluating programs.
5. Establish a community plan for dealing with barriers to seniors’ participation in physical activities and improvements needed to boost the participation of older adults in physical activities. The plan should be detailed and, according to the Building Healthy Communities program, include the following information: action steps, people involved, timeline, necessary resources, potential challenges, and possible partners. The Healthy People 2010 Toolkit (Public Health Foundation, 2002) provides excellent information about strategic community planning.
6. Publish a resource tool that lists all physical activity programs in the community. This list should include both outdoor and indoor programs and detailed information about each one. The Healthy People in Healthy Communities Planning Guide (Office of Disease Prevention & Health Promotion, 2001) provides excellent examples of the ways communities can create lists of opportunities for physical activity in the aging population.
7. Design a community campaign to inform older members about how to achieve the suggested amounts of physical activity. The campaign can involve the participation of different institutions in the community, the publication of handbooks, the creation of clubs, the offering of special promotions and incentives, and so on.
8. Offer older members of the community a variety of physical activity programs. The offerings should include both formal programs and more informal opportunities for self-directed physical activities. The Center for Healthy Aging at the National Council on Aging lists and describes many evidence-based physical activity and health promotion programs that they endorse on their Web site: www.healthyagingprograms.org.
9. Initiate physical activity programs and other opportunities that are appropriate, both culturally and in terms of physical location, for the entire community. To ensure equal access and inclusion, programs must address the diverse needs and desires of the community’s older population. According to the American Society on Aging, as stated in the EPA’s Building Healthy Communities program, the process of inclusion incorporates the strengths-based approach of engagement, cultural competency, and use of the community’s strengths and available resources. A chapter of the report, “A Blueprint for Health Promotion” focuses specifically on the topic of cultural competence and health promotion programs (American Society on Aging, 2002).
10. Remain committed to ongoing development of programs and policies and to the involvement of people who represent different segments of the community. As well as developing coalitions of community partners to develop and implement health promotion in communities, the coalitions should be committed to ongoing evaluation of the collations and their connection to the community to ensure further development and implementation of new programs as well as the maintenance of existing programs.

Models that Combine Nutrition and Physical Activity

The Administration on Aging has created a national campaign called “You Can! Steps to Healthier Aging,” which is intended to increase the level of physical activity among older adults and enhance their dietary intake. According to Loughrey (2004), the campaign is a good example of how public health officials and medical experts are becoming increasingly aware and supportive of the belief that positive change, even if it occurs in moderate increments, helps to improve the older population’s health and quality of life. The goal of the campaign is to enlist organizations with a variety of relevant interests from across the United States. Among the diverse organizations enlisted in the plan are hospitals, state and local agencies on aging, park departments, and faith-based groups. Their mission is to provide older members of the community with information, activities, and/or programs that promote physical activity and better nutritional decisions. In 2004, the Administration on Aging successfully engaged more than 1,000 organizations across the country. However, its overall objective was to enlist more than 2,000 organizations and reach at least 2 million older adults by 2006 (Loughrey, 2004).

Effects of Health Disparities and Cultural Diversity

• The social worker’s ability to promote individual and community level health promotion is limited by the reality that older members of minority groups experience poorer health, are less likely to be adequately insured, and often receive disparate access to health care compared with older members of the majority group (Johnson & Smith, 2002).

The failure to meet the health care needs of all members of society is challenged further by poorly understood and inadequately defined health care outcomes among older members of minority groups. In addition, as Johnson and Smith pointed out, members of minority groups are underrepresented among health care professionals in the American health care system. To begin to address these disparities, Johnson and Smith suggested that interventions designed to reduce currently existing disparities must address multiple interrelated systemic issues, in the form of questions, such as the following.

• What knowledge and attitudes prompt individuals’ requests for services?
• What preconceptions of both individuals and providers affect communication and influence the provision of services?
• What structure and financing of the health care system would improve their access?
• What is the impact of social and community factors on the delivery of health care services?

Other approaches to promoting health in older adults from culturally diverse populations include the following.

• To tackle the lack of diversity among health care professionals, Johnson and Smith (2002) suggest beginning with the educational system. Parents and community leaders can encourage cultural diversity among these professionals by becoming more involved in advocating for it in the educational and health care systems. Academic Medical Centers should include outreach and community service as part of their role (IOM 2008).
• Medical professionals recognize that increasing the cultural competency of practitioners is important because one’s culture affects not only the practitioner’s diagnosis and treatment but his or her responsiveness to the patient as well. Therefore, cross-cultural awareness needs to be integrated into training in all health care and professional educational settings. In addition, minority communities need to become involved in research initiatives to achieve results that are effective for their situation.
• Building partnerships between health care centers and communities enhances health outcomes and standards of care (Johnson & Smith, 2002). Indeed, some studies on health disparities suggest the need for totally new research models to test dynamic multidimensional interventions that use continuous feedback from patients, providers, and communities to make interventions effective and improve community-wide outcomes (Rust & Cooper, 2007).
• Ultimately, increased knowledge and collaborative work between community organizations and research institutes can help to transform decisions made at the policy level. For example, the SHARE Awards Program, a joint effort between GlaxoSmithKline and the University of Pennsylvania’s Institute on Aging provides funding to small organizations that are committed to improving the lives of older members of minority groups. (For more information about the SHARE awards program, visit http://www.gsk.com/press_archive/press_11172001.htm)

Implications for Health Policy

The World Health Organization (WHO) has developed a policy framework for active aging that is generalizable to aging populations in all. In the organization’s report entitled, Active Ageing: A Policy Framework countries (World Health Organization [WHO], 2002), key policy proposals for the three pillars (health, security, and participation) are outlined. The key proposals in the health arena include developing and implementing policies and programs that:

1. Prevent and reduce the prevalence of chronic illnesses and disabilities—areas of policy focus include, but are not limited to, policies that address the economic influences on health, such as poverty; the development and implementation of effective prevention programs; the barriers to active aging that communities present; as well as the mental health, quality of life, and social supports necessary for successful active aging among older adults.
2. Increase protective factors for health and reduce risk factors for disease—areas of policy focus include, but are not limited to, policies that address tobacco, alcohol, and substance use; access to health care for oral health as well as vision and hearing loss; nutrition; access to medication; and adherence to prescribed medical treatment.
3. Develop age-friendly health care and social services that are designed to meet the unique needs of older adults—areas of policy focus include, but are not limited to, access to affordable health insurance, health care that is delivered across a continuum rather than the delivery that is provided in our current fragmented system, provision of adequate training, salaries and working conditions for formal caregivers, and support for informal caregivers, who are mainly women caring for their older parents.
4. Provide training for the workforce that will deliver services to older adults—areas of policy focus include, but are not limited to, providing basic training as well as opportunities for lifelong learning to improve skills, development of volunteer opportunities for work with aging individuals, and policies to improve the economic situation of formal caregivers in the aging services arena.

As we begin to develop new policies to address the needs of the growing population of older adults worldwide, the WHO policy framework can be used as a guide to developing sound policies that can address the multiple factors that impact the health of older adults.

Conclusion

As the tsunami wave of older adults approaches between now and the year 2020, health promotion has become a topic of great importance in the United States and globally. In this chapter, we presented:

1. An overview of the epidemiology of aging and the need for health promotion to ensure that older adults maintain the highest level of health and quality of life possible. We identified myths of aging that make the development and implementation of health promotion initiatives and programs difficult and dispelled these myths.
2. A framework for health promotion in aging that includes a summary of the history of health promotion models as well as the models that are currently being used to guide the development and implementation of health promotion initiatives in the United States. The frameworks include the Successful Aging Model, the Health Aging Model, the Active Ageing Model, and the Alberta Rose Model. Each of these models has been used to develop successful health promotion programs.
3. Possible roles for social workers in promotion health. Social workers can play critical roles as members of public health teams in promoting community-wide health promotion programs. Furthermore, they can engage older to clients to promote the adoption of healthy behaviors and lifestyle changes in order to prevent and/or diminish the impact of chronic diseases on older adults’ quality of life and health status. In this section, we also identified policy issues that social workers can highlight in order to promote health among older adults.

References

American Society on Aging. (2002). Blueprint for Health Promotion. Retrieved December, 18, 2008, from http://www.asaging.org/cdc/module1/home.cfm

Center for the Advancement of Health. (2006). A new vision of aging: Helping older adults make healthier choices. Issue briefing No. 2. Washington, DC: Author. Retrieved March 20, 2008, from http://www.cfah.org/pdfs/agingreport.pdf

Centers for Disease Control and Prevention (CDC). (2007). The national blueprint: Increasing physical activity among adults age 50 and older. Atlanta, GA: Author. Retrieved March 2, 2008, from http://www.rwjf.org/files/publications/other/Age50BlueprintSinglepages.pdf

CDC. (2008). Healthy aging: Preserving function & improving quality of life among older adults. Atlanta, GA: Author. Retrieved on December 17, 2008, from http://www.cdc.gov?nccdphp/publications/aag/pdf/healthy_aging.pdf

Cooper, B. S., & Fishman, E. (2003). The interdisciplinary team in the management of chronic conditions: Has its time come? Baltimore, MD: Partnership for Solutions.

Environmental Protection Agency. (2007). Building Healthy Communities for Active Aging National Recognition Program. Retrieved on December 17, 2008, from http://depts.washington.edu/harn/tools/10strategies.pdf

Fulmer, T., Hyer, K., Flaherty, E., Mezey, M., Whitehall, N., Jacobs, M., et al. (2005). Geriatric interdisciplinary team training program.Journal of Aging & Health, 17(4), 413-470.

Hall, P., & Weaver, L. (2001). Interdisciplinary education and teamwork: A long and winding road. Medical Education, 35(9), 867-875.

Institute of Medicine. (2008). Retooling for an aging America. Washington, DC: The National Academies Press.

Johnson, M. A. (2004). Hype and hope about foods and supplements for healthy aging. Generations, 28(3), 45-53.

Johnson, J. C., & Smith, N. H. (2002). Health and social issues associated with racial, ethnic, and cultural disparities. Generations, 26(3), 25-32.

Loughrey, K. (2004). You can! Steps to healthier aging: AoA nationwide campaign. Generations, 28(3), 95-96.

Marshall, V. W., & Altpeter, M. (2005). Cultivating social work leadership in health promotion and aging: Strategies for active aging interventions. Health & Social Work, 30(2), 135-144.

National Council on Aging. (2004). Center for Healthy Aging: Model health programs for communities. Best practices in physical activity. Washington, DC: Author. Retrieved March 18, 2008, from http://www.healthyagingprograms.org

Office of Disease Preventions & Health Promotion, United States Department of Health and Human Services (USDHHS). (2001). Healthy people in healthy communities planning guide. Rockville, MD: Author.

Public Health Foundation. (2002). Healthy People 2010 toolkit: A field guide to planning. Waldorf, MD: Author. Retrieved January 5, 2009, from http://www.phf.org/resourcestools/Pages/Healthy_People_2010_Toolkit.aspx

Research Triangle Institute International. (2003). Final report of the senior companion quality of care evaluation. Report prepared for the Corporation for National and Community Service. Research Triangle Park, NC: Author. Retrieved May 6, 2008, from http://www.seniorcorps.gov/pdf/final_scp_report.pdf

Remington, E. L., Foulk, M. A., & Williams, B. C. (2006). Evaluation of evidence for interprofessional education. American Journal of Pharmaceutical Education, 70(3), 1-7.

Rowe, J. W., & Kahn, R. L. (1998). Successful aging. New York: Pantheon Books.

Rust, G., & Cooper, L. A. (2007). How can practice-based research contribute to the elimination of health disparities? Journal of the American Board of Family Medicine, 20(2), 105-114.

Wellman, N. S. (2004). Nutrition and older adults—Why you should care: Talking to families and caregivers. Generations, 28(3), 97-99.

World Health organization (WHO). (2002). Active ageing: A policy framework. Geneva, Switzerland: Author. Retrieved February 5, 2008, from http://whqlibdoc.who.int/hq/2002/WHO_NMH_NPH_02.8.pdf

Document Date: September 11, 2009 

Grace Christ, DSW - Columbia University, School of Social Work
Susan E. Blacker, BSW, MSW, RN – St. Michael’s Hospital, Toronto, Ontario.

IntroApproaches to Care

Introduction

A recent multi-site study of hospital-based palliative care programs described their rationale and mission in the following way. “Advances in disease prevention, disease-modifying therapies, and medical technology in combination with the aging of the population have resulted in a dramatic growth in the number of adults living with serious illness. Despite enormous expenditures, patients with serious illness often receive poor quality medical care, characterized by untreated symptoms, unmet personal care needs, high caregiver burden, and low patient and family satisfaction. Palliative care is the interdisciplinary specialty that focuses on improving quality of life for patients with advanced illness and for their families through pain and symptom management, communication and support for medical decisions around goals of care, and assurance of safe transitions between care settings” (Morrison, Maroney-Galin, Kralovec, & Meier, 2005, p. 1784).

Social workers provide the majority of mental health, psychosocial, and bereavement services in hospice (Connor, 2007-2008) and in hospital-based palliative care. As the older population increases and requires more palliative services during advanced illness, it is essential for social workers to develop expertise in biopsychosocial assessment, evidence-based interventions, and service delivery systems that will enable them to address their special needs.

Though not often described as such, palliative care programs are in fact comprehensive systems of care or care coordination models that aim to organize patient care for patients with advanced illnesses to be more effective in meeting patients’ needs. Palliative care aims to be holistic in providing careful attention to pain and symptom management, attention to emotional and psychosocial issues, and fully integrating family caregivers in establishing goals of care. There are differences in the specific components of palliative care programs, where they are located, how they are conducted, and the personnel they use, though standards are being developed to create greater uniformity and consistency across programs (Ferrell et al., 2007).

This module will address:

• Similarities and differences between hospice and palliative care approaches: their demographic and social contexts, and the epidemiology of diseases they treat.
• Special challenges for older adults with advanced disease.
• The changing course of advanced illnesses of older adults: three different trajectories.
• Emerging integration/collaboration of palliative and hospice care in the U.S.
• Social work expertise and unique contribution to palliative care.
• Biopsychosocial assessment.
• Assessment of U.S. population needs and preferences.
• Assessment of patients and families individual needs and preferences.
• Intervention models: tasks, psychosocial health needs and related services, and evidence based approaches.
• Social work’s development of a subspecialty and leadership in palliative care.
• Critical health policy issues in the U.S. in palliative care.
   

Approaches to Care of Advanced Illness in Elders
Palliative and Hospice Care

Synopsis

There are two different approaches to the care of advanced or terminal illness in the United States: Palliative Care and Hospice. Both have emerged from a similar philosophy of care, but they differ on when and where care is provided. In the U.S. Hospice is most often provided in the home or in a long-term care facility. To obtain reimbursement, the patient must be off curative treatment, have a life expectancy of no more than 6 months, and have a care partner if services are to be provided in the home. In contrast palliative care is most often provided in the hospital or in an outpatient facility without the requirement of a specific prognosis, and it can be delivered in combination with curative treatment. As shown in Figures 1 and 2, each has a defined philosophy and model of care based largely on U.S. health care reimbursement structures. Figure 3 shows one effort to reconcile these two approaches and to extend care through the bereavement process of survivors. Currently hospice and palliative care proponents are testing models to integrate and reconcile their differences as they seek to permeate mainstream health care services with the palliative philosophy.

Palliative care: Philosophy and Model

• Palliative Care is both a philosophy and a program model. It is a term used for an approach, initiated within Hospice that was developed to improve the quality of life of patients and their families facing the problems associated with life-threatening illness.

Improving the quality of life is accomplished through the prevention and relief of suffering by means of early identification and careful assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. This approach to care is now integrated into both hospice and palliative care programs though in somewhat different ways. Advocates of the palliative care approach believe that it should be integrated throughout medical practice with serious illness from diagnosis to terminal phases and across all sites of care. The WHO definition of palliative care, accessed on July 24, 2008, can be found in http://www.who.int/cancer/palliative/definition/en/.

The palliative care program model consists of the following nine components:

1. Provides relief from pain and other distressing symptoms.
2. Affirms life and regards dying as a normal process.
3. Intends to neither hasten nor postpone death.
4. Integrates the psychological and spiritual aspects of patient care.
5. Offers a support system to help patients live as actively as possible until death.
6. Offers a support system to help the family cope during the patient’s illness and in their own bereavement.
7. Uses a team approach to address the needs of patients and their families, including, if indicated, bereavement counseling.
8. Enhances the quality of life for the patient, and may also positively influence the course of illness.
9. Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

As will be described in more detail below and in the policy section, the palliative care philosophy emerged from the hospice movement but differs from hospice in the U.S. in that it aims to help patients regardless of prognosis and at all stages of a serious illness, not just at the end of life. Palliative care also differs from Hospice in the U.S. in that it may be delivered simultaneous with curative or life-prolonging medical care and is not dependent on the patient’s prognosis, i.e., expected time until death. Proponents believe that it should be an integral part of comprehensive care for patients of all ages with life-limiting illnesses. Practically, however, without the hospice benefit, palliative care often struggles to provide the skilled home care services and psychosocial support available through hospice and needed during advanced stages of illnesses, for example 24-hour-phone consultation.

Hospice: Philosophy and Model

• Hospice programs initiated the palliative care approach; however, in the U.S. treatment reimbursement restrictions prevent many patients from receiving this care.

Although Hospice programs developed and promoted a palliative approach, their functioning is shaped by the U.S. reimbursement structure. Hospices are only reimbursed for work with patients whose life expectancy, as determined by two physicians, is 6 months or less. Importantly, Hospice patients will not receive Medicare benefits if they are still receiving or pursuing curative treatments. These restrictions are limiting because it is increasingly difficult to accurately determine prognosis on an individual level. Technology and medical advances have blurred the line between advanced illness and end of life. Furthermore, curative treatments may also be palliative and with continued medical advances emerging it is difficult for some patients to agree not to participate in any curative efforts if they might extend their lives without increasing suffering of patient or family.

Comparison of Models

Figure 1 shows the traditional model of intervening by Hospice after a terminal prognosis of no more than 6 months. Figure 2 shows the current palliative care model that aims to complement curative treatments throughout the illness experience, beginning at diagnosis. This reflects the contemporary focus on expanding palliative care beyond end-of-life care, in contrast to Hospice care, which begins 6 months before death. Figure 3 is an example of emerging newer models that exemplify a more holistic approach from the point of diagnosis that explicitly encompasses survivor bereavement following death.

The Importance of Palliative Care Related to Demographic and Social Context and Epidemiology

The Demographic Context of Advanced Illness

The populations in the U.S. and in many countries are aging. The number of Americans over the age of 65 has tripled in the 20th century. At the same time life expectancy has increased dramatically. More people are now living longer and the proportion of those living beyond 60 has increased, and will increase further over the next 20 years (Sepulveda, Marlin, Yoshida, & Ullrich, 2002). Table 1 documents the change in life expectancy in the U.S. from 1900 to 2000 as well as changes in where people die, how medical care is paid for, and the period of disability before death. By 2005, life expectancy had already increased to 77.9 years.

Improvements in public health, including the prevention and treatment of infectious diseases and other medical advances, have greatly reduced the proportion of deaths occurring in childhood and early adulthood. As a consequence, older adults account for an increasing number of deaths in the U.S. Preliminary data for 2005 show that of the 2,447,903 individuals who died in that year 1, 788,459 (73%) were over the age of 65 years(Centers for Disease Control [CDC], 2008) The number of oldest old, people over 85 years (who have the highest mortality rate), will double to 10 million by the year 2030. Comparatively little research has been carried out on their palliative care needs during advanced and terminal illness phases.

The Social Context of Advanced Illness

Other social realities have forced and shaped the discussion of advanced and terminal illness in the U.S.

1. The aging of the Baby Boom generation. This highlights the expanding older population and their complex chronic illness related needs. Discussion of Medicare and Social Security are focused on the large number of people who will become eligible for those entitlements over the next 10 years and the smaller work force that will be called upon to support these entitlements.
2. High profile media debates. The debate about assisted suicide in high profile cases has increased attention to the realities of suffering at the end of life.
3. Increasing mass violence and both human caused and natural disasters. These events have made people more open to discussing difficult topics.
4. Caregiver burden. Because our institutions are accessible only to the most acutely severe conditions, family and community caregivers are shouldering an increasing burden for what has become a much longer trajectory of advanced illness (Field & Cassel, 1997).
5. Access problems at all levels. In the U.S. the numbers of uninsured continues to rise as employers pull back from the increasing costs of health care and benefits. Insurance companies avoid covering long-term severe conditions, especially in mental health. Newer legal, but especially illegal immigrants continue to be challenged by lack of health care. Notably, estimates are that over 10 million Hispanic undocumented immigrants live in the United States, and that their medical care is almost exclusively provided in emergency rooms (Weisman & Epstein, 2004). Medical and technological advances have created complex medical-ethical questions about when life ends and how patients can have some choice. The line between life and death has become blurred. Physicians are finding it increasingly difficult to give a prognosis, to know the dying trajectory—to answer the frequent question: “When does it end?” Older adults continue to outlive previous prognoses, even with multiple chronic conditions (Bern-Klug, 2004).
6. Quality of care problems. Criticisms continue to emerge about the quality of care in our current system, especially care of the aged, chronically ill, and dying population.

Changing Epidemiology of Disease

• As populations age, the pattern of diseases that people suffer and die from also changes. Increasingly more people die as a result of serious chronic illnesses such as heart disease, cerebrovascular disease (including stroke), respiratory disease, and cancer (Murray & Lopez, 1997).

Older people often suffer from multiple chronic conditions that might contribute to death, making it difficult to establish the main cause of death. Table 2 shows the changes in the ranking of the main causes of death as predicted for the year 2020 compared with the actual causes in 1990 (Murray & Lopez, 1997).

Longevity may not inevitably be accompanied by longer periods of disability towards the end of life (Andrews, 2001). Indeed, some recent studies show disability declining in successive cohorts of people as they age (Manton & Land, 2000). A recent study of older Americans from 1992 to 2003 found increases in active life expectancy past age 65 and decreases in life expectancy with severe disability (Cai & Lubitz, 2007). However, if more people live to older ages and if chronic diseases become more common with age, the number of people living with their effects will increase. More people will need some form of help towards the end of life. in particular, women are more likely than men to suffer from several chronic conditions such as osteoporosis and arthritis that may compromise this extended survival (Mathers, Sadana, Salomon, Murray, & Lopez, 2001). Women over 90 years of age also have a higher incidence than men of non-vascular dementia (e.g., Alzheimer’s Disease), whereas men have a higher incidence of the rarer vascular dementia throughout the life cycle (Ruintenberg, Alewijn, van Swieten, Hofman, & Breteler, 2001).

Major Challenges of Advanced Illness in Older Adults

Greater Medical Complexity in Older Adults

• The problems of older adults with advanced chronic and terminal illnesses are different and more complex than those of younger people.
• There is greater variation in the functional level of older adults depending on the presence and severity of multiple medical conditions. The cumulative affect of multiple diseases may lead to greater impairment and care needs than expected with the advance of any one disease.
• Older adults are more likely to experience adverse reactions to drugs due to not only the aging process, but also the presence of multiple medical problems.
• The psychological reactions of older adults may be related to an accumulation of minor problems and their impact on functioning.
•  Problems of acute illness may be superimposed on physical or mental impairment, economic hardship, and social isolation (Raveis, 2007).

Changing Course of Advanced Chronic and Terminal Illnesses: Common Trajectories in Three Diseases

• The problems older people now experience in the last years of life are caused not only by the challenges of older age, but also by increased life expectancy and the nature and course of their final illness.
  • The prognosis of diseases in older adults, that is time till death, has become increasingly difficult to predict at the individual level (Hallenbeck, 2003; Hansen, Danis, & Garrett, 1997).
  • Advances in medicine and pharmacology have also made it more difficult to determine if someone in the advanced stages of a disease is dying or will die soon, and at what point further
  • When treatment becomes futile remains difficult to determine (Lynn et al., 1996). Currently this discussion often involves the question of the role of chemotherapy at the end of life for patients with cancer (Harrington & Smith, 2008). Recently, however, a broad range of other diseases have been treated by both Hospice and Palliative Care (Connor, 2007-2008).

Patients and families have predictable needs based on characteristics of the final illness. The examples of cancer, heart failure, and dementia illustrate some of these differences.

Cancer rates increase with age: 75% of deaths from cancer occur in people over 65 years. For women, the most common cancers are breast, lung, and colorectal. For men, the most common are lung, prostate, and colorectal. The prognosis for any individual depends on the extent of the growth at presentation and the response of the tumor to treatment. Treatment may include surgery, radiotherapy, and chemotherapy. As the first chart in Figure 4 shows, people with cancer may experience a long period of good functioning with limited impairment. They may not be severely restricted in their activities until the disease stops responding to treatment, at which point they experience a relatively rapid decline. However, because of the historical association of cancer with disability, pain, and death in its terminal phase, patients may need considerable support, education, and continuous communication to cope adequately with their anxiety about this disease in its final stages. Patients with cancer and their caregivers say they want more information and involvement in decision-making. They experience better psychosocial adjustment if their pain and symptoms are controlled and when good communication is part of their care from the time of diagnosis. Because cancer has been somewhat more predictable in its advanced phases than other diseases (i.e., predicting time to death), it became the dominant model for both hospice and palliative care interventions. When diagnosed early, people living with cancer experience a long period of fairly good physical functioning, followed by a somewhat longer period of decline (Institute of Medicine [IOM], 2007).

Heart failure. Heart failure affects more than one in ten people over the age of 70. The 5-year mortality of 80% is worse than it is for many cancers (World Health Organization [WHO], 2004). The course of the disease as summarized in the second chart in Figure 4 is very different from that of cancer. There are intermittent exacerbations of the symptoms of breathlessness and pain followed by a gradual return to a level of functioning that is often fairly close to the previous level (McCarthy, Lay, & Addington-Hall, 1996; McCarthy, Addington-Hall, & Lay, 1997). Death may occur during one of the exacerbation crises, or the patient may experience a course of gradual decline over time. Considerable progress has been made in treating symptoms and managing medical crises. However, families often have difficulty understanding the complex drug regimes required. Patients with heart failure seem less informed about their diagnosis and prognosis and give little evidence of receiving the education from professionals that many cancer patients do (Selman, et al., 2007). Many professionals suggest they are reluctant to raise the issue of prognosis, in part because it has become increasingly difficult to predict when death is imminent with this disease. Yet even when the symptom burden of patients is similar to or in some instances greater than that of patients dying from cancer, patients with severe heart failure are rarely referred to specialist palliative care teams (Goodlin, et al., 2005; Horne & Payne, 2004). A survey of hospice medical directors about providing care to patients with severe heart failure revealed a lack of knowledge and expertise in treating this disease, insufficient identification of palliative interventions, and frequent underdevelopment of relevant standards, training, policies, procedures, and standardized care plans for management of heart failure patients (Goodlin et al., 2005). As a consequence, families report poor coordination and fragmentation of care, the lack of a single health professional to relate to, and less satisfaction with information and support available to them than families of cancer patients report. The case study included in this module exemplifies these gaps in care in advanced cardiac conditions and their effect on the patient’s experience of illness. This case also shows the occurrence of multiple crises with levels of functioning that gradually worsen over time.

Dementia. Dementia has been estimated to affect approximately 6% to 10% of individuals aged 65 and older. The prevalence increases with age, rising from 1% to 2% among those aged 65 to 74 to 30% or more of those aged 85 or older. The median length of survival from diagnosis to death is 8 years (Hofman et al., 1991).

As depicted in the third chart in Figure 4, there is often a slow progressive deterioration in the individual’s ability and awareness (Hendrie, 1998). Common symptoms of dementia include mental confusion, urinary incontinence, low mood, constipation, and loss of appetite. The physical and emotional burden on family members is well documented, as is their grief as they slowly lose the person they knew (Diwan, Hougham, & Sachs, 2004). Patients’ inability to communicate their wishes as the disease progresses raises many ethical issues and the need for a surrogate decision-maker. Making decisions for another individual about the use of antibiotics in the treatment of pneumonia at the end of life and the use of feeding tubes for hydration and nutrition is difficult for family members. Other questions arise with many life threatening conditions, but are particularly challenging when the individual is cognitively impaired. How and when should life-prolonging technology be used? When should its use end, and who should make that decision? How are these difficult decisions now being made, and how do families view the experience (Schulz & Martire, 2004)?

The Emerging Integration/Collaboration of Palliative and Hospice Care in the U.S.

Palliative and Hospice approaches to care for the dying have had different historical roots and reimbursement conditions in the U.S. that have shaped their models of service delivery. Learning about these roots and conditions will enable students to understand the modern practice differences and the role of social work in the model’s development. Recently, practice reflects a movement toward greater integration in the following ways (Byock, 2000; Ferrell et al., 2007):

• Hospices, traditionally located in the community, now frequently provide service in long-term-care facilities, hospitals, and other health care programs. Some have recently developed palliative care services within their community-based hospice programs in order to serve people who wish to continue curative treatment during the dying process.
• Palliative care has emerged as a sub-specialty within medicine and a program within hospitals to provide cost savings and high quality alternatives to intensive care units for advanced illness. The aim is to better serve the growing population of patients who come to hospitals with advanced complex health problems. These patients report dissatisfaction with treatment by acute care focused hospitals and health care services that offer only curative treatment and limited opportunities for thoughtful patient and family discussion and decision-making. Palliative care programs continue to refer to Hospice when active treatment is no longer possible or desired by the patient so that the patient can receive a full range of in-home services supported by the hospice benefit.
• These different approaches also shape the social work role in ways that require different knowledge and skill sets for each. For example, hospice makes extensive use of home-based services in which the social worker has considerable autonomy with patient and family and also unique responsibility. In the hospital, the palliative care social worker collaborates extensively with multiple professionals and teams. Another difference is that patients electing palliative care that permits curative treatment as well as palliation are likely to be more ambivalent about confronting the terminal nature of their illness. This requires more flexible use of directness in interventions. Traditional hospice patients agree to forgo treatments that have a curative aim, thus indicating some level of acceptance of their terminal condition. Lawsen (2007) describes the experiences and challenges from the point of view of a practitioner who has worked in both models.
• Advocates of both approaches and their combinations are working to develop a model of a seamless continuum of services for terminally ill patients that address their varied needs and preferences over the long course of their illnesses. A brief discussion of history, current challenges, goals, practices, and relationship to social work of both approaches follows.

Origins of Hospice Care: London, England

The philosophical origins of palliative care as a service delivery approach came from the hospice movement, which began in the 1960s in the U.K. and spread to the U.S. in the 1970s. Dame Cicely Saunders who held degrees in medical social work, medicine, and nursing is recognized as the founder of this movement because she established the first research and teaching hospice, St. Christopher’s Hospice, in London in 1967 (Monroe, Hansford, Payne, & Sykes, 2007-2008). She was inspired to provide more holistic and humane care of the dying by her social work experiences and observations of the suffering of injured soldiers and other terminally ill people during WWII and its aftermath. She challenged professionals to communicate to patients: “You matter because you are you, and you matter to the last moment of your life”(Monroe et al., 2007-2008, p. 64).

Hospice and Social Work

• Some have described the entire hospice movement as an embodiment of social work values, principles, and practice.

Indeed social workers are the largest mental health discipline providing psychosocial services in both hospice and palliative care. Conner (2007-2008) reports, “Social workers have been providing the bulk of psychosocial services in hospice programs. This is due to the fact that social work is a required core hospice service and that social workers, if adequately trained in mental health, can also meet the hospice’s required need for counseling services…there is growing concern that hospices and palliative care programs are not devoting adequate resources to psychosocial services, which are thought to be one of the defining characteristics of the field” (p. 97).

While hospice in England was provided primarily in an institution, care was initially provided in the home in the U.S., due to limited resources. Also home care reflected the U.S. hospice community’s criticism of futile and often painful curative treatment given in hospitals at the end of life. Hospice providers aimed to promote acceptance of what is now called “A Natural Death,” but one in which pain and uncomfortable symptoms are well controlled. Table 3 presents the varied environments in which hospices deliver services today and the practice issues for social work shaped by the environment of the setting.

Hospice programs flourished after the development of the Medicare benefit in 1982. They have become well established in the health care system. Today more than 4200 are licensed, an increase of almost 1000 in just the past 2 years. In 2005, the National Hospice and Palliative Care Organization (NHPCO) reported that 1.2 million people received hospice care in the United States. They estimated that at least one of every three deaths, of all causes, in the United States took place under hospice care. In part this reflects the growing need of services for an expanding older population as well as a growing acceptance of the palliative care philosophy in the U.S. health care system at the advanced stages of disease (Connor, 2007-2008).

Palliative Care Extends Reform to Hospitals, Institutions, and Professionals

During the past decade there has been a strong national movement to permeate the larger health care system with the palliative philosophy throughout the course of treatment rather than only when death is imminent. Indeed some specialists believe they should de-couple palliative and end-of-life care in order to engage referrals. Many patients do not want to confront death until it is imminent. Physicians have established palliative medicine as a subspecialty within medicine. Since 2000, Palliative Care Programs have increased from 632 to over 1300 according to the Center to Advance Palliative Care (Morrison et al., 2005). More recently, these programs have been welcomed, indeed “embraced,” as an alternative within hospitals to intensive care of terminally ill patients (Kuehn, 2007). These programs were developed to address the vast unmet needs among aging and dying patients, but also to address concerns about the cost of care for a growing aging population (Morrison et al., 2008). (See discussion of costs of hospice and palliative approaches in the policy section.)

References

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Connor, S. R. (2007-2008). Development of hospice and palliative care in the United States. Omega (Westport), 56(1), 89-99.

Diwan, S., Hougham, G., & Sachs, G. (2004). Strain experienced by caregivers of dementia patients receiving palliative care: Findings from the palliative excellence in Alzheimer care efforts (PEACE) Program. Journal of Palliative Medicine, 7(6), 797-807.

Ferrell , B., Connor , S., Cordes, A., Dahlin , C., Fine , P., Hutton , N., et al. (2007). The national agenda for quality palliative care: The National Consensus Project and the National Quality Forum. Journal of Pain and Symptom Management, 33(6), 737-744.

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Horne, G., & Payne, S. (2004). Removing the boundaries: palliative care for patients with heart failure. Palliative Medicine, 18(291), 291-296.

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Lawsen, R. (2007). Home and hospital; hospice and palliative care: How the environment impacts the social work role, Journal of Social Work in End-of-Life & Palliative Care, 3(2), 3-17.

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Go to next page for Curriculum Resources associated with this section.

Document Date: September 11, 2009

Grace Christ, DSW - Columbia University, School of Social Work
Susan E. Blacker, BSW, MSW, RSW – St. Michael’s Hospital, Toronto, Ontario.

Role Social Work

Social Work’s Unique Contribution to Palliative Care

• Social work has great potential to improve care for older people with life-threatening illnesses or those who are dying or bereaved.

As previously noted Social Workers are the largest group of mental health professionals working with this population in both hospice and palliative care. They encounter individuals with advanced illness in a broad range of health care and social organizations and agencies. Social Work values, knowledge, and skills are inherently consistent with the principles of palliative care: client self-determination, the biopsychosocial/spiritual perspective, family and social systems, cultural competence, and promotion of social justice are a natural fit in the palliative care context. With their psychosocial training, social workers have comprehensive skills, not only as practitioners, but as educators, researchers, and policy makers as well. Social workers are fundamentally trained to practice from a “person in his or her environment” perspective, and this theoretical view is invaluable to the medical care team.

Expertise in Medical and Social Systems

• The social worker possesses expert knowledge about navigating the medical and social systems that frequently present barriers to the client. Social workers are experts in communication with families, and also between the client and family and the healthcare team, since they draw upon the family’s experience in a unique way and guide the team in their interactions with them.

Social work in practice naturally invites collaboration with the family, the interprofessional care team, and the community. Social work’s view includes an appreciation of cultural and spiritual dimensions of the family’s life.

As experts at helping individuals and families maximize coping in crisis and at addressing the psychosocial domains of symptoms and suffering, as well as the experience of grief and loss, social workers are able to provide intensive counseling for those confronted by life-limiting illness and the myriad complex problems imposed by illness (Taylor-Brown, Altilio, Blacker, Christ, & Walsh-Burke, 2001). The profession’s focus on “starting where the client is” encourages exploration of the client’s needs, strengths, and resources that inform the ongoing work of living with advanced illness or end-of-life issues.

Commitment to Social Justice and Alleviation of Health Disparities

• Social work’s long commitment to social justice positions it for a leadership role in analyzing, advocating, and implementing policy changes that can mitigate the multiple factors leading to disparities in health care.

The social work role as patient advocate is also critical to palliative care. Linking patients to resources and helping patients negotiate the goals of care are an essential therapeutic focus. Often social workers are part of ethics committees or consult teams (Csikai & Sales, 1998; Taylor-Brown et al., 2001). Upholding the principles of self-determination and autonomy, justice, and access for all within the care delivery system are important elements of social work advocacy. Social workers have played a critical role in many areas of health care policy creation and reform, and in insuring access to quality care for the dying.

Social work researchers have the potential to further expand the focus on palliative and end-of-life care to include areas such as ethnic, cultural, and economic disparities; substance abuse; incarceration; interventions at different stages in the life course; crisis interventions; and interventions in community and organizational contexts. Social work expertise in implementing changes in policy through advocacy and leadership should be used to bring about important improvements in care for people who have an advanced chronic illness or are dying or bereaved (Kramer, Christ, Bern-Klug, & Francoeur, 2005).

Education of Patient and Family 

• Providing information about resources, advance care planning, caregiving tasks and supports, and normative grief responses is common to social work practice in end-of-life care (Blum, Clark, & Marcusen, 2001; Hedlund & Clark, 2001).

Social workers commonly intervene when there are languages, literacy, or cognitive deficits that present barriers to patients’ understanding of complex information.

In summary, as stated in the “National Agenda for Social Work Research in Palliative and End-of-Life Care” (Kramer et al., 2005), social workers have an important role to play, “given their work in varied and divergent practice settings across the life-span, their role in addressing mental health needs, grief, and psychosocial aspects of well-being, and their commitment to promoting culturally competent, effective, and humane care, particularly for the most vulnerable and oppressed members of society” (p. 418).

Assessment of Needs and Preferences for Palliative Care in the US Population

Surveys of the U.S. population concerning patients’ and families’ needs and preferences for care during advanced illness have supported the expansion of palliative care and continue to inform professionals about the values of the general population, but also have stimulated research on variations among cultural groupings. For example studies of marginalized groups who believe they have been poorly treated by the health care system for other medical issues found that they may refuse to sign advanced directives giving the physician permission to withhold treatment. Social work has often been in the forefront of research into the different views of marginalized subgroups (Bullock, 2006; del Rio, 2006). This knowledge base is used in the individual and family assessment by inquiring about patients and family’s values and preferences and previous experiences with health care.

Assessment of U.S. Population Needs and Preferences

Early Surveys

Although hospice has been accepted by professionals and advocates of better end-of-life care, it was reaching only a small proportion of those dying in the U.S. because of the restrictions on prognosis and curative treatments. Two landmark national studies and an Institute of Medicine (IOM) report (cited below) gave particular momentum to a movement to change the culture of death and expand the palliative care philosophy and approach to include hospitals and the full range of health services.

• The “Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments” (SUPPORT STUDY) conducted from 1989-1991 explored the actual experience of 4301 U.S. hospitalized patients who were expected to survive 6 months or less. They found that patients received a lot of aggressive treatment, their wishes were not known, they did not have “do not resuscitate” orders until very late in the course of their illness, and they experienced pain and spent time in the intensive care unit (Knaus & Lynn, 2000).
• The second study, conducted by the American Health Decisions research team in 1997 and funded by the Robert Wood Johnson Foundation, surveyed Americans’ views, hopes, and beliefs about the process of dying in America. The researchers found Americans feared reaching the end of their lives hooked up to machines. They did not believe that the current health care system supported their concept of dying. They felt it was important to plan for death and dying but were uncomfortable with the topic and resisted taking action.

Current Practice with Patients and Families

• A review of existing practices and current research, summarized in the 1997 IOM report Approaching death: Improving care at the end of life (Field & Cassel, 1997) identified four major concerns of the elderly:
  • Needless suffering by many patients at the end of life when they do not receive supportive care or when they receive unnecessary or in-effective invasive treatments.
  • Legal, organizational, and economic factors that impede the delivery of care.
  • Inadequate education of health care professionals on end-of-life care.
  • Lack of research to support evidence-based care during advanced illness.
• Seven recommendations were made by this IOM report to improve care:
  • Improve public dialogue and professional education.
  • Re-establish doctor-patient relationships.
  • Develop improved advance directives/care planning.
  • Overcome barriers to pain management.
  • Provide information to support informed decision- making.
  • Expand hospice-type services.
  • Respect cultural and religious differences.

Recent Studies

Two recent surveys by two different research groups had similar findings as the earlier surveys.

• In the first, 340 seriously ill patients reported the following five responses when asked what they wanted during a terminal illness process (Singer, Martin, & Kelner, 1999; Steinhauser et al., 2000).
  • Pain and symptom control.
  • Avoid inappropriate prolongation of the dying process.
  • Achieve a sense of control.
  • Relieve burdens on family.
  • Strengthen relationships with loved ones.
• In a separate study of 475 family caregivers of elderly patients who had died 1 to 2 years prior to the survey, respondents listed the following 10 items as what their desires had been (Tolle, 1999).
  • Loved one’s wishes honored.
  • Inclusion in decision processes.
  • Support/assistance at home.
  • Practical help (transportation, medicines, equipment).
  • Personal care needs (bathing, feeding, toileting).
  • Honest information.
  • 24/7 access.
  • To be listened to.
  • Privacy.
  • To be remembered and contacted after the death.

Biopsychosocial Assessment of Individual Patients and Families

The biopsychosocial assessment of older patients in the advanced stages of life-threatening illness begins with the recognition that patients and families are confronting two challenges in a more acute way than they have previously in living with these chronic conditions: a) reorganization and adjustment to change and b) grief and loss. Factors influencing how families cope are incorporated into a social work assessment and include the seven domains discussed below. This framework is a modification of domains identified in Blacker and Rainess Jordan’s chapter on working with families in the book Living with Dying: A Handbook for End-of-Life Health Care Practitioners (Blacker & Rainess Jordan, 2006).

1. Past and Current Medical Situation

• Older adults may have experienced years of coping with multiple illnesses and chronic conditions, and they require time and assistance in comprehending their often complex medical situation.

Many older adults with chronic illnesses have gained skills from their challenges and many demonstrate considerable resilience and ability to reconcile themselves to physical decline. Others, however, are overwhelmed by the stress of life threat and ambivalent about the goals of palliative care, i.e., whether they would rather be pursuing curative or restorative treatment goals. Current physical or psychological symptoms (e.g., pain, fatigue, depression, anxiety, and delirium) must be assessed carefully because they frequently occur in patients with multiple chronic conditions. The social work assessment explores how patients understand their symptoms and illness and how they plan to manage this phase (Zabora & Loscalzo, 1996; Blacker & Rainess Jordan, 2006).

Key questions for the clinician to consider:

• What is significant to this patient’s medical history?
• What is their experience with and level of trust in the health care system?
• What is the current stage/extent of illness and what should be expected next?
• What are current goals of treatment?
• What are the patient’s current physical or psychological symptoms (e.g., pain, fatigue, depression, delirium)? Are they being addressed?
• What is the patient/family’s understanding and interpretation of this information?
• What are barriers to communication and understanding?

2. Symptom Assessment

The presence of symptoms of pain, fatigue, etc. must be assessed from a multidimensional perspective. The social worker considers the nature and quality of these symptoms and also their impact on the patient’s quality of life. Tools for assessing symptoms include, for example, a pain scale or pain diary. More extensive guidelines for assessing the psychosocial aspects of pain and symptom management can be found in (Altilio, Otis-Green, Hedlund, & Cohen Fineberg, 2006; Jerant, Azari, Nesbitt, & Meyers, 2004; Liao & Ferrell, 2000)The Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale are two measures of symptoms and distress that give evidence of providing a brief, but valid, systematic approach to monitoring symptoms, their intensity, and their impact on functioning over time. A selected list of high quality measures of pain and symptom management, functional status, psychosocial care, caregiver assessment, and quality of life currently used in practice and/or research can be accessed at the National Palliative Care Research Center Web site under measurement and evaluation tools (http://www.npcrc.org/content/25/Measurement-and-Evaluation-Tools.aspx).

3. Impact of Stage in the Life Cycle

Many older individuals become resilient as they learn and practice strategies for coping with personal losses and physical declines over time. However, they may also have fewer social, economic, and personal resources to cope with advancing illness and physical decline. The network of informal supports to help care for them may have been seriously diminished by death, illness, and geographic distance. The spouse or partner of the terminally ill older adult may themselves be frail. Therefore, a history of past experiences of illness, disability, and death, as well as of coping and strengths, is helpful not only to the social worker and other members of the team, but also to the older client’s own understanding of their feelings and reactions (Boockvar & Meier, 2006; Hooyman & Kramer, 2006; Hooyman & Kiyak, 2008).

Key questions for the worker to ask in order to consider the family’s developmental stage include:

• How will the illness and treatment demands affect the family’s developmental stage?
• What losses are typically associated with this life stage, and how will this crisis affect the family?(Hansson & Stroebe, 2007; Hooyman & Kramer, 2006),
• To what degree does the patient/family experience the illness as a burden?
  (Blacker & Rainess Jordan, 2006) (Dumont, Fillion, Gagnon, & Bernier, 2008; Dumont et al., 2006; Raveis, 2007; Raveis, Karus, & Pretter, 2004; Wilson, Curran, & McPherson, 2005)

4. Family’s Past Experiences and Coping with Illness

This can be assessed by exploring seven areas. These areas represent factors that have been found over a broad range of social and psychological studies to be significant in people’s ability to cope with medical illnesses.

• Resources accessed in the past that were helpful or not.
• Misconceptions that may occur due to past experiences(Bullock, 2006; del Rio, 2006; Johnson, Kuchibhatla, & Tulsky, 2008)
• The presence of past/current mental health problems (Kadan-Lottick, Vanderwerker, Block, Zhang, & Prigerson, 2005; Robertson, 2008; Vanderwerker, Laff, Kadan-Lottick, McColl, & Prigerson, 2005; Wright et al., 2008)
• History of alcohol/drug use(Farkas, 2004; Passik, Kirsh, Donaghy, & Portenoy, 2006)
• Previous use of formal and informal supports (Schroepfer, 2008; Schulz & Beach, 1999; Schulz, Tompkins, Wood, & Decker, 1987)
• Identified strategies for coping, accessing help, information (D'Zurilla & Nezu, 2006)
• Ability to communicate with the health care team and navigate the system.(Blacker & Rainess Jordan, 2006)

Key questions to address in this specific domain of the assessment include:

• Does this patient or family member have any past or current mental health problems or symptoms?
• Does this patient or family member have a history of alcohol/drug use?
• Does the patient/family member present with anxiety or depression?
• What supports have held the patient and family members in the past when faced with difficult situations?
• How have this patient and family defined a strategy for coping and accessed help?
• How do this patient and family define hope? (Clayton et al., 2008)
• How well are this patient and family able to communicate with the health care team and navigate the system? (Blacker & Rainess Jordan, 2006)

5. Spirituality/Faith

Because for many people their spiritual beliefs contribute to both the individual and the families’ coping with advanced illness, this is an important area to assess and incorporate into treatment planning. A commonly used assessment tool for spirituality is the FICA defined in the following way (Pulchalski, 2002):

F—Faith or beliefs: What is your faith?
I—Importance: Is it important in your life?
C—Community: Are you a part of a spiritual community?
A—Address: How should this be addressed in your health care?

Key questions for the social worker to consider include in the assessment include:

• What meaning has this patient/family given to this illness?
• How do they define who/what is in control of or influencing this situation?
• How do spiritual beliefs contribute to the individual’s and family’s coping?
• How has this illness affected the patient’s and family’s spiritual well-being?
  (Pulchalski, 2002)

6. Socioeconomic Factors/Resources

What are the resources the family has to enable them to manage the care and economic demands of advanced illness? Common problems include financial strain, low literacy level, lack of insurance, lack of transportation, inadequate caregiver situation (for example the frailty of the caregiver), and inappropriate environment for safety in the home. These needs, often addressed by the social worker as discharge planner or case manager, are frequently the most critical to the patient and family’s well being. They are rarely studied systematically in relation to psychosocial outcomes, but are provided because they are widely perceived to be a humanitarian benefit. Among the sparse research that has sought to determine the effects on health or health care of providing logistical or material resources, one study documented that when individuals with cancer lacked transportation, treatment was foregone (Guidry, Aday, Zhang, & Winn, 1997). And studies of people with a variety of chronic diseases have found that environmental barriers such as cost and logistical obstacles interfere with the ability to manage their condition (Bayliss et al., 2003; Vincze, Barner, & Lopez, 2004). Finally better patient and family satisfaction and better quality of care were associated with practical help for advanced illness patients in a review of review articles in palliative care (Mularski et al., 2007).

Practical as well as emotional needs are often heightened at the point of transitions in care, especially during advanced illness. These occur when symptoms progress, treatment is ineffective, the goals of care change, and often the care setting is insufficient to meet the patients needs necessitating additional services or change of site. Interventions that provide information, care coordination, and follow up as well as practical help have been found to improve care and patient and family satisfaction (Coleman, 2003b).

Key questions to investigate in this domain include:

•  What resources (formal and informal supports) does this family have to enable them to manage the demands of the illness?
•  How is the patient/family managing the financial demands resulting from this situation?
• Does the patient want to remain at home and die at home?
• Is there a caregiver, or group of caregivers, who will be available to the patient until he dies?
• If the patient wants to die at home, do family members feel they can bear to live there after the death?
• If the patient is remaining at home, what needs to be initiated to help make this happen safely? What durable medical equipment needs to be obtained to maximize safety and comfort?
• What referrals for hospice and community support need to be initiated?
• If not, what kind of contingency plans need to be made (e.g., placement in a nursing facility or inpatient hospice, move in with children, hire private duty help)?

           (Blacker & Rainess Jordan, 2006)

7. Cultural Values and Beliefs

Identification of how cultural beliefs contribute to the individual’s and/or family’s understanding and coping patterns requires assessment. The family’s culture, values, and beliefs underlie the patient and family’s perception of the health care system, their understanding of the meaning of the diagnosis and treatment, the roles of different genders and of different family members concerning caregiving responsibilities, the supports and resources available to them, and the particular death rituals required for the last stages of the illness and post-death period (Bullock, 2006; del Rio, 2006; Kagawa-Singer & Blackhall, 2001). Understanding the patient and family culture helps social workers (and the full medical team) to develop effective communication with them, to reduce conflicts and misunderstandings, and to determine how family members are best included in care planning and sharing bad news.

Key questions to consider in the areas of patient’s and family’s cultural background include:

• What is the identifiable ”culture” (e.g., formal cultural or religious group beliefs, sexual orientation) of this family?
• How do this patient’s and/or family’s cultural values and beliefs contribute to their understanding, coping style, and psychosocial needs?
• How is terminal illness dealt with in the patient’s culture? What values affect family caregiving, the use of medical technology, decision-making regarding treatment, use of advance directives, truth-telling, and concerns about place of death?
• Are there conflicts between the patient’s culture and values and those of their family?
• How do the cultural differences between the care team and the patient/family affect this situation?

           (Blacker & Rainess Jordan, 2006, )

Social Work Interventions in Palliative Care: the Evidence Base

The evolving nature and current state of the evidence base in hospice and palliative care can perhaps best be summarized by four recent reviews beginning with a 2004 AHRQ report on systematic reviews, intervention and observational studies in palliative care(Lorenz et al., 2004; Mularski et al., 2007). This was followed in 2007 by an updated review of outcome measures in end-of-life care (Mularski et al., 2007). In 2008 a systematic review of all randomized controlled trials in which specialized palliative care was the intervention and for which outcomes included quality of life was published in JAMA(Zimmermann, Riechelmann, Krzyzanowska, Rodin, & Tannock, 2008). Finally in 2008, a publication of a large multisite study of cost savings of palliative care programs in hospitals presented their findings of cost effectiveness of this intervention(Morrison et al., 2008).

The 2004 AHRQ review selected 10 systematic reviews, 12 intervention studies and 17 observational studies to identify individual outcome measures most strongly associated with patient and/or family satisfaction with end-of-life care. They found the preponderance of intervention and observational literature support the effectiveness of palliative care for improving patient and caregiver satisfaction. However they indicated an emerging problem with the measurement of outcomes. Those that were developed specifically for palliative care settings and processes were more likely to show positive effects. They suggested inconsistencies in findings of research may relate to the use of more global and nonspecific measures or those developed for other populations.(Lorenz et al., 2004)

The 2004 AHRQ report also reviewed 12 systematic reviews or meta-analyses, 18 intervention studies and 14 observational studies that met their rigorous criteria to identify factors associated with better or worse outcomes. They found evidence of the association of satisfaction and better quality of care with pain management, communication interventions, practical support, and enhanced caregiving. Interventions that improved patient or family satisfaction included those aimed to ameliorate cancer pain, relieve depression, non-pharmacologic interventions for behavioral problems in dementia and those used to foster continuity in cancer and chronic heart failure care.

These articles reflect the challenge of developing both psychosocial and medical research in an area in which both are important and relevant to desired outcomes. For example, a second 2008 review of the effectiveness of interventions in palliative care reviewed 33 systematic reviews and 89 high quality interventions (Lorenz et al., 2008). They found strong evidence of the effectiveness of medical interventions to treat pain and other physical symptoms, and some evidence of the effectiveness of treating depression with psychotherapy. However they regretted that they could not review specific interventions such as patient and family centered approaches, spiritual support and bereavement due to the nomenclature challenges, for example, the lack of consistent words used to describe such interventions, and the breadth of the literature. They found strong evidence of support for multi-component interventions to improve continuity, moderate evidence to support advance care planning led by skilled facilitators who engage key decision makers and moderate evidence to support interventions to alleviate caregiver burden. This documents some of the challenges in a new, interdisciplinary, and evolving research area.

Most measures in palliative care practice and research focus on quality of life, quality of care and symptoms(Lorenz et al., 2004). A more recent review of measures in end-of-life care (Mularski et al., 2007) reported gaps in the development of measures for continuity of care, advance care planning, spirituality, and caregiver well-being. These reviewers supported and updated the Toolkit of Instruments to Measure End of Life Care available at http://www.chcr.brown.edu/pcoc/BIBLIOGRAPHIES.HTM. This toolkit evaluates measurement tools used through 2000. In this resource review we additionally recommend the use of the National Palliative Care Research Center’s (http://www.npcrc.org/)resources on measurement in end-of-life care research. Both reviews of the literature on measurement highlighted the fact that different studies almost always use different measures in the more developed domains. The use of a large number of measures of uncertain quality makes it difficult to compare findings or to synthesize insights across research or quality improvement studies. Therefore more rigorous testing of the highest quality measures is a recommended research direction.

The 2008 review of 22 randomized controlled trials (selected by rigorous criteria) published in JAMA found the most consistent evidence for the effectiveness of palliative care programs in improvement of family satisfaction with care(7 of 10 studies favored the intervention).However, only 4 of 13 studies assessing quality of life and 1 of 14 assessing symptoms showed a significant benefit of the intervention. Again reviewers identified the problem that these studies did not use quality of life measures specific for terminally ill patients and the exact components of their palliative care intervention varied considerably. The most provocative finding for palliative care colleagues was that only one of seven studies showed significant cost savings. Methodological limitations were identified in all trials, including contamination of the control group, and substantial problems with recruitment, attrition, and adherence. The authors concluded that the evidence for benefit from specialized palliative care is sparse and limited by methodological shortcomings. They recommended carefully planned trials, using a standardized palliative care intervention and measures constructed specifically for this population.

This study was shortly followed by a report of a multisite, randomized controlled trial designed to specifically study the cost savings of palliative care by matching 2278 palliative care patients to 18 427 usual care patients from 8 different hospital sites, treated during the same 2 year period of time. They were able to report significant cost reductions and therefore concluded that palliative care consultation does result in considerable cost savings including intensive care and laboratory costs associated with usual care patients.

The large number of recent studies and reviews of studies shows the importance of this intervention as the population ages and the numbers of individuals with advanced disease expands. Clearly quality of care, patient and family satisfaction with care and the costs of care are important outcomes. It also demonstrates the challenges of an evolving research area that is interdisciplinary and requires, even more that most other health areas, the simultaneous use of both psychosocial and medical interventions. If palliative care is viewed as a care coordination model it faces the same challenges as other such approaches: the need to work toward a more clearly described and standardized intervention and development of the highest quality measures that can be used across studies. 

Specific psychosocial components of palliative care programs that relate to patient needs and have developed some evidence base in palliative care are described here.

• Psychoeducation for patient and family(Houts, Witmer, Egeth, Loscalzo, & Zabora, 2001)
• Life completion discussions that focus on above assessed, psychosocial, spiritual, and emotional concerns (Steinhauser et al., 2008).
  • Life Review processes (Butler, 1980; Chochinov et al., 2005).
  • Self-disclosure and exploration of completion in relationships (Fratorolli, 2006; Greenberg, Wortman, & Stone, 1996; Pennebaker & O'Heeron, 1984).
  • Legacy building through transmission of knowledge and wisdom.
•  Family conferencing (Curtis et al., 2001; Curtis et al., 2005; Hudson, Quinn, O'Hanlon, & Aranda, 2008; Yennurajalingam et al., 2008).
• Cognitive behavioral interventions to assist with pain and symptom management (Altilio et al., 2006; Loscalzo & Jacobsen, 1990).
• Transition/ care coordination interventions (Coleman, 2004).
• Medical crisis counseling (Loscalzo & K. BrintzenhofeSzoc, 1998).

Social Work Conceptual Frameworks for Intervention

Social work interventions in advanced illness use at least two conceptual frameworks: 1) identifying the tasks of terminal illness and interventions that can help patients and families fulfill those tasks; 2) identifying the psychosocial health needs of patients and families, and the psychosocial health services to address them. Intervention approaches with older adults often rely on an evidence base generally developed with younger patient populations, and most interventions with older adults are drawn largely from the consensus of the practice literature. Future research is required to expand the evidence base for interventions with older adults in the advanced stages of illness.

Tasks of Terminal Illness

The tasks for patients with terminal illness can be viewed as comprising four areas. Interventions using this model focus on helping patients fulfill these tasks (Moynihan, Christ, & Gallo-Silver, 1988).

Maintaining Acceptable Quality of Life during Advanced Stages
Since the advanced stages of many diseases now span months, sometimes years, patients and families often need to focus on ways to maintain an acceptable quality of life while the patient is dying. This requires considerable effort to manage symptoms and pain, but also to find ways to remain emotionally connected to family and friends. Patients often need to detoxify or become less anxious about death’s inevitability by having opportunities to discuss their fears and concerns. These discussions with formal or informal support providers enables them to maintain a hopeful, but realistic attitude about their condition (Schroepfer, 2006). The long months of waiting can be boring, and patients seek ways to meaningfully fill their time. They often long for communication with others about their fears, but also need support for developing distracting and normative activities that keep them connected to ongoing life. Patients may require help with decisions about continued treatments for their diseases as they weigh the benefits of additional months of life offered by medical advances, but with the possibility of reduced quality of life and additional suffering for themselves and their families.

Coping with Deteriorating Physical Condition
As the disease progresses, more of the patient’s attention is focused on managing symptoms, pain, and related psychological distress. They require support for mourning losses in function as they occur, but also for recognizing and maximizing remaining strengths and capacities.

Confronting Existential, Spiritual, and Religious Issues
As the disease progresses patient’s also confront thoughts about the meaning of their lives, their suffering, and their impending death. Cultural, religious, and spiritual views impact their thinking. Patients struggle with fears of existential aloneness. The search for a positive sense of meaning in one’s life, death, and suffering has received greater attention in recent years, since it has been found to impact the patient’s quality of life as much as physical symptoms. The ability to see oneself in a context greater and more enduring than the self moves many patients from suffering to a sense of well-being, and therefore, a focus on seeking meaning is being incorporated into interventions (Mount, Boston, & Cohen, 2007).

Planning for the Remaining Family and Friends
No matter how old the patient is, there may be family or friends left behind. Planning for their care and well being and having final conversations that address final goodbyes, loving connections, forgiveness, and reconciliation can provide important solace for both patients and families.

The tasks for families of individuals in advanced illness stages include the following:

1. Remaining involved with the family member, sometimes over many months and years of illness and challenges in functioning.
2. Arranging for effective medical and custodial care of the family member.
3. Adapting to role changes as the patient’s condition alters over time.
4. Bearing the effects of grief over the patient’s losses in functioning.
5. Coming to terms with the reality of the impending loss.
6. Saying goodbye.

Psychosocial Health Needs and Health Services for Older Patients with Advanced Disease

The model that identifies psychosocial health needs of older patients with advanced disease and the psychosocial health services that address these is outlined in Table 1. For some interventions, such as psycho-education, cognitive-behavioral interventions, and family conferencing, an evidence base for treatment exists, but it is mostly with younger populations. Other interventions rely on the consensus found in the practice literature.

Range Of Social Work Interventions for Advanced Illness

Psychoeducation

Psychoeducation includes teaching patients with advanced disease and families about the illness and treatment process and how they can cope with their disease, the health care system, and at the same time prepare psychologically for the terminal illness. The evidence base suggests that a broad range of teaching assists can be helpful in educating patients, but often need to be tailored to individual preferences and capacities (Elliott, Ross-Degnan, Adams, Gelb Safran, & Soumeral, 2007; Gastona & Mitchell, 2005; Houts, Witmer, Egeth, Loscalzo, & Zabora, 2001; McPherson, Higginson, & Hearn, 2001; Walling et al., 2008). The following topics have been incorporated in these patient and family psycho-education approaches in palliative care:

• Psychosocial impact of advanced illness.
• Navigating health care and social systems.
• Communicating with their health care team.
• Communicating with each other as a family.
• Completing advance directives.
• Coping with/managing symptoms and distress.
• Managing practical needs.
• Recognizing and managing the effects of grief.

Decision-making during Advanced Illness

In the treatment setting, the need for discussion about goals of care and decision-making often occur during certain crisis or transition points in the illness. Clearly attention to well implemented transitions in care is vital to effective care coordination and patient and family well-being (Coleman, 2003a, 2003b; Mayfield, 2004; Parry, Kramer, & Coleman, 2006; Schroepfer, 2006; Walling et al., 2008). Typical transitions include:

1. Transitions from aggressive/curative treatment to palliation only.
2. Establishing DNR/DNI status.
3. Planning for where the death will occur or change of setting for the patient: hospital, home, hospice, long-term care.
4. Determining what resources can be accessed.

Facilitating decisions takes place in the context of concerns of health care professionals and family members, both of whom worry about “taking away hope” (Albinsson & Strang, 2003; McCarthy, Addington-Hall, & Lay, 1997; Raleigh & Boehm, 1994; Schroepfer, 2007).

Crisis Intervention

Crises in medical care are typically situational. Commonly the crisis is related to emotional exhaustion in both patients and family caregivers. The goal of crisis intervention is to enable clients to quickly regain a sense of equilibrium, maintain hope, and focus on meaningful and effective activity. Social workers are uniquely skilled to manage the challenging family dynamics that can occur and to draw on multiple systems of support to help the family and patient solve the problems at hand (Loscalzo & BrintzenhofeSzoc, 1998; Schroepfer, 2007).

• Guidelines for social workers during medical crises include the following:
   
  • Accepting your limitations helps patients accept theirs, and helps you make appropriate referrals.
  • Promise only what you personally can insure will happen.
  • Do not prematurely stop the expression of intense emotional feelings.
  • Avoid saying “I know how you feel.”
  • Telling a client that everything will be alright may not make anyone feel better.
  • Demanding a positive attitude can be an unrealistic burden.

Cognitive-behavioral Interventions

Cognitive-behavioral interventions are based on the postulate that mental and physical symptoms are in part a function of underlying thoughts, feelings, and/or behaviors that are of a maladaptive nature. The goal of these interventions is to restructure the individuals thinking and feeling to be more adaptive to the situation. For example to identify realistic goals they can achieve even with their current functional limitations.

Cognitive-behavioral interventions:

• are among the most widely offered psychosocial services in comprehensive cancer centers,
• have an evidence base that shows they are effective in reducing emotional distress and controlling physical symptoms,
• can be administered in a brief period of time,
• can be easily tailored to the individual,
• are readily accepted by patients since the emphasis is on providing increased sense of personal control and self-efficacy.

A package of cognitive-behavioral interventions may include several of the following techniques. The evidence base suggests that they are effective in improving mood, quality of life, and reducing pain and symptom distress; however, further research is needed to clarify whether one approach is more effective than another during advanced illness. Two examples follow:

• Life review is an intervention with a growing evidence base in working with older adults and advanced illness. It includes components of reminiscence, reconciliation, forgiveness, and resolution of past conflicts. It offers individuals a chance to “edit” their life story by re-telling and in the process reintegrating events in the broader perspective of a full life course. In recent years using this intervention with older adults has shown improved psychological well-being and life satisfaction, and improved levels of depression (Bohlmeijer, Smit, & Cuipers, 2003; Butler, 1980; Chochinov et al., 2005).
• Progressive muscle relaxation, cognitive restructuring, coping self-statements, distraction, systematic desensitization, hypnosis, guided imagery, and problem-solving therapy are often effective when used in combination to help patients manage pain, and other physical and emotional symptoms of advanced illness (Altilio et al., 2006; D'Zurilla & Nezu, 2006; Loscalzo & Jacobsen, 1990).

Family Conferencing

A team intervention strategy, a family conference intervention is consistent with the interdisciplinary focus of palliative care practice and acknowledges the unit of care as the patient and their family and support network. Benefits cited by professionals from studies of this intervention include the following (Hudson et al., 2008; Yennurajalingam et al., 2008).

• The conference presents an opportunity to both gather and disseminate information efficiently.
• It is a means to minister to the needs of the patient and family.
• It is an important tool for consensus-building when a decision needs to be made.
• It decreases the possibility of miscommunication.
• It reduces lengths of stay in the ICU and increases patient and family satisfaction with their care while there. (Curtis et al., 2005; McDonagh et al., 2004)

A recent review of the limited practice and research literature on family conferencing found that social workers are the major conveners reported for this interdisciplinary intervention. They recommended much more research to develop definitions, clarify goals and objectives and specify therapeutic processes and desired outcomes (Hudson et al., 2008).

Practical Dimensions of Care for Patients and Families

While practical interventions, which are so central to the social work role, are rarely researched, there is such long standing and wide acceptance of these as humane services that there has been little question as to whether they “work.” One study has shown that the absence of information, finances, transportation, and adequate living arrangements do have a negative impact on treatment adherence (Institute of Medicine, 2007). As mentioned above, a 2007 synthesis of findings of end-of-life care outcomes found evidence of the association of satisfaction and better quality of care with practical support, and enhanced caregiving as well as other medical interventions. (Mularski et al., 2007).

Knowledge and communication

What to do for pain and other symptoms, how to make decisions, who to call, what to do after death?

• Physical Environment and personal care. What to provide for immediate comfort and control, how to manage personal care, how to permit privacy or companionship when wanted, how to provide physical access and safety, how to provide education about managing personal care.
• Family and others close to the patient. What to do for primary companion and caregiver, what to do for dependents, who to be the on-call in emergencies.
• Financial and other practical issues. How to handle short-term finances, what to do about longer-term finances, how to manage the household.

Social Work Specialization and Generalist Training in Palliative Care

Social work’s specific contributions in education, research, administration, and policy development have more recently become an integral part of the interdisciplinary discussion of appropriate practice parameters in this expanding field. The Social Work Leadership Development Awards from the Open Society Institute’s Project on Death in America and CSWE’s Hartford-funded Gero Ed Center programs have facilitated the creation of Social Work leadership in program development, research, and education. Still the expanding population of patients with advanced illness requires all health social workers be trained in palliative care. The Social Work Hospice and Palliative Care Network (www.swhpn.org ) continues to advance, with the support of stakeholder organizations, the goals that have been established to move the field forward. Over 40 social work leaders were funded from 1999 through 2004 to create new models of service delivery and professional training, and to advance research within their discipline and across disciplinary boundaries (Walsh-Burke & Csikai, 2005).

Below are listed key events in the development of hospice and palliative care within social work (Christ & Blacker, 2005).

• 1999: Need for education and training for SWs in EOL documented (Christ & Sormanti, 1999).
• 1999: Project on Death in America Social Work Leadership Awards Year 1 (first cohort), first joint meeting with PDIA Scholars (MDs and RNs).
• 2001: Publications by PDIA SW Leaders begin (SSWLHC Best Practices Paper); SW EOL Pall listserv established by T. Altilio.
• 2002: Smith College and NYU certificate programs in SW and EOL begin.
• 2002: First Social Work and EOL Summit held at Duke University.
• 2004: Standards of Practice for SW and EOL published by NASW.
• 2005: Second Social Work and EOL Summit held at NASW.
• 2005: Journal of Social Work and EOL and Palliative Care published by Haworth Press (Ellen Csikai, PDIA social work leader and Editor).
• 2006: SW Leaders attend first NASW Social Work Congress.
• 2007: Social Work Hospice and Palliative Care Network (SWHPM) becomes 501C3 not for profit organization.
• 2007: First PDIA social work leadership recognition award give at NHPCO.
• 2008: First Pre-conference Institute for Social Workers held at AAHPM.
• 2008: NASW and NHPCO develop social work certification.
• 2008: Second PDIA social work leadership recognition award given at AAHPM.

Conclusions

As this module documents, the palliative care needs of older adults are expanding exponentially and will become an important part of the social work role in advanced illness going forward. We conclude that at its base palliative care is a comprehensive care coordination intervention model with an emphasis on psychosocial services as its defining characteristic. In addition to advanced interdisciplinary care it involves meticulous pain and symptom management; careful attention to the social, psychological, and spiritual needs of patients and families; and an essential focus on improving care transitions, largely through improved methods of communication and coordination.

Social workers are clearly the major providers of mental health and psychosocial services to older adults with advanced illnesses, including critical services for their informal caregivers. The development of social work specialization in this area emerged from the Project on Death in America’s leadership awards program and the CSWE Gero-Ed Center. Specialization continues to support the development and dissemination of research and training within the profession. However, because the population is expanding, all health social workers require knowledge and skills to intervene with older adults with advanced illness. This is further recognized by NASW’s creation of a credential in this area.

Different reimbursement structures influence what services are available to older adults. At the same time new, potentially cost effective service delivery models are being evaluated. 
As the field is a newly emerging one, so is the evidence base. The challenge to social work is not only to demonstrate expertise in biopsychosocial assessment and intervention in advanced illness with older adults, but also to take a leadership role in the development and research of these new integrated models of care as well as specific psychosocial interventions for patients and families.

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Document Date: September 11, 2009

Gunnar Almgren, PhD – University of Washington, School of Social Work

Social Policy

Synopsis

Palliative care, defined broadly as a holistic approach to care for patients with progressive and advanced disease with limited prospects for long-term survival (World Health Organization, 2008), confronts a number of formidable policy obstacles and challenges to its development in the U.S. Included among them are inadequate access, fragmented delivery systems, inadequate financing mechanisms, limited professional education, and the shortage of health care providers that is endemic throughout the U.S. health care system (Institute of Medicine, 2001; Reb, 2003). In the brief analysis that follows, two of the dominant policy issues in palliative care are highlighted. The first is the problematic approach to palliative care in the U.S. that, for historical reasons, forces an often harsh choice between curative health care and health care that is narrowly limited to comfort and “death with dignity.” This dichotomous orientation toward palliative care contrasts with that of other countries (e.g., Australia, Canada, New Zealand, the United Kingdom), which approach palliative care as more of a holistic continuum with permeable boundaries between curative and purely supportive care. The second policy issue brought into focus concerns the economic viability of more progressive approaches to palliative care, in particular the need to promote research that identifies the most cost-effective approaches to palliative care.

The Dichotomous Orientation of Palliative Care Services in the U.S.

A Brief History of the U.S. Hospice Care Paradigm

• Throughout most of the 20th century, health care in the U.S. focused almost exclusively on the cure of diseases, such that the dying process was not considered part of the health care mission.

Until the last few decades of the 1900s, the U.S. health care system was dominated by a curative paradigm, which treated the dying process as a failure of medicine, as opposed to embracing care of the dying as an essential mission of medicine and an integral component of the health care system. As a result, aggressive and futile curative interventions too often were pursued to harmful and dehumanizing extremes, and the dying were often relegated to the stigmatized category of “lost causes” that medicine had nothing further to offer (National Hospice and Palliative Care Organization, 2008). The hospice movement, which had its beginnings in England with the work of British social worker and physician Sicily Saunders in the late 1960s, was propelled into American public consciousness and policy during the 1970s both by the research and writings of American psychiatrist Dr. Elisabeth Kubler-Ross (On Death and Dying, 1969) and through the transformative partnership between Saunders and Florence Wald of the Yale University School of Nursing (Almgren, 2007; National Hospice and Palliative Care Organization, 2008). Ultimately, Congress institutionalized hospice care through a series of legislative modifications to the Medicare program, culminating with the establishment of a Medicare hospice benefit in 1986. The Medicare hospice benefit in turn established the basic template for hospice benefits throughout the health care system, including the private health insurance industry, hospice programs funded by state Medicaid programs, and the Veterans Administration system. Although the specific hospice program benefits vary by the form of insurance coverage, the typical array of hospice benefits follow the Medicare model, which includes physicians’ services, intermittent home nursing care, medical supplies, outpatient drugs, home health aide services, social work, professional therapies (physical, occupational, and speech), short-term inpatient care for respite/symptom management, and spiritual counseling. To be eligible for hospice benefits in the typical program, the recipient must be diagnosed by a physician as terminally ill within a specified period (conventionally 6 months), and must voluntarily accept hospice care benefits as an alternative to standard health insurance benefits—including and most specifically those benefits that involve “curative treatment” (Almgren, 2007).

Square Pegs and Round Holes: The Hospice Care Paradigm and the Indeterminate Nature of Palliative Care

• Palliative care philosophy, which does not have strict borders between curative and supportive care, does not fit easily into the mainstream hospice care paradigm in the U.S., which presumes fixed limits on survival time and rigid boundaries between curative and supportive care.

Although the introduction of hospice care into the mainstream of American health care over the past few decades has been a great leap forward, the hospice paradigm of palliative care has also institutionalized a regrettable dichotomy between palliative care with an indeterminate course and duration, and the “hospice” approach to care for the dying that is predicated on a fixed limit of survival and eligibility for palliative care benefits.

In contrast, palliative care in its conventional definition does not rigidly dichotomize the choice between curative and supportive care and normalizes the coexistence of potentially fatal disease processes with hope and uncertainty. The World Health Organization’s definition of palliative care, while it pertains to care that is not intended to postpone death or provide cure for disease, entails a holistic approach to care that both helps patients live as actively as possible until death and also “can be provided in conjunction with other therapies that are intended to prolong life” (World Health Organization, 2008). Thus palliative care, as a concept and general philosophy of care, acknowledges that people can live a very long time in the penumbra between the pursuit of curative or at least ameliorative treatment and the acceptance of death—particularly the many elderly that are burdened with multiple chronic and potentially fatal conditions with largely indeterminate trajectories.

Reconciling Palliative Care Policy with Clinical Reality: The Origin of Medical “Term Limits”

• Palliative care policy in the U.S. is centered on the same restrictive eligibility criteria used for hospice.

The primary policy challenge of palliative care policy during the final three decades of the last century entailed the development of a system of care for the dying that was accessible to persons of all ages and income levels—not just the Medicare eligible older adult population (Morrison, 2005; National Hospice and Palliative Care Organization, 2008). The organizing paradigm for palliative care policy, however, remained entrenched in the more restrictive and deterministic hospice model of palliative care that is centered on two (previously mentioned) eligibility criteria that are nearly universal to all hospice programs:

1. A prognosis of death within 6 months.
2. The voluntary abandonment of curative interventions.

Although to some extent these restrictive eligibility criteria align with a philosophy of care that is centered on “death with dignity,” it is also true that both criteria were introduced as a way of promoting the financial sustainability of the Medicare hospice care benefit. These financially driven criteria ultimately became institutionalized as hospice benefits were expanded into the employer-based insurance industry and state Medicaid programs. The end result is a system of palliative care in the U.S. that confuses health care financing assumptions with clinical efficacy (Passik et al., 2004; Scitovsky, 1994).

We are now confronted by a new policy challenge in palliative care, one that entails the development of services and financing structures that can better accommodate the clinical complexities of the final stages of life. That is, for example, a system of care that can at once accommodate the patient with late stage chronic obstructive pulmonary disease (who may be 2 months or 2 years from death), as well as the cancer patient who desires palliative care mixed with naturopathic curative medicine as a way of holding out hope (Fitzsimons et al., 2007; Kramer & Auer, 2005).

Reconciling Palliative Care Policy with Clinical Reality: Family and Caregiver Needs versus Provider Service Structures

• There is often a mismatch between the standard set of services provided by palliative care provider organizations and the actual needs of the dying and their caregivers.

Although health care provider organizations can often operate more efficiently to the extent that services can be standardized, research has shown that there is enormous diversity in the needs of caregivers for specific forms of support (both professional and non-professional), and that needs change as the illness progresses (Osse, Vernooij-Dassen, Schade, & Grol, 2006; Proot et al., 2004). The implications of these kinds of findings, from a policy standpoint, are that palliative care delivery and financing schemes must accommodate individualized approaches to patient care and frequent periodic reassessment of changing needs (Davies & Higginson, 2004).

The Promotion of Palliative Care Services

• An intuitively logical strategy for the promotion of palliative care into the mainstream entails the integration of specialized palliative care services within existing hospice programs.

This approach has several advantages, among them: 
1) building on the significant areas of overlap between the holistic orientation and clinical expertise of clinicians, 
2) utilizing the provider connections and credibility established by the hospice organization, 
3) where possible, avoiding unnecessary duplication of clinical and support services,
4) reducing or eliminating destructive competition between palliative care and hospice care provider organizations, and 
5) providing for a true continuum of care from diagnosis to death (Byock, 2000).

However, some early evidence suggests that there are formidable barriers to surmount, arising from the assumption of costs associated with more complex patients, e.g., higher drug costs, higher utilization of outpatient and emergency services, and physician visits (Passik et al., 2004). In effect, hospice care organizations are at risk for having to subsidize palliative care services from hospice benefit dollars—an unsustainable strategy over any length of time (Passik et al., 2004). Yet, cost and clinical outcome findings are more favorable among studies that evaluate the cost-effectiveness of hospital-based consultation models of palliative care, which may be in a better position to ameliorate the most egregious instances of high cost/poor outcome care (Cowan, 2001). Hospital-based consultation models, though they may differ from one another in some respects, commonly entail the use of physicians, nurses, and social workers with specialized training in palliative care as consultants to more traditionally trained health care providers. While the traditional providers continue to retain primary responsibility for care of the patient, the palliative care consultants provide essential expertise in all aspects of palliative care. In the long run, a seamless continuum of care is best promoted by a financing structure that is integrated with clinical services, as in capitated (HMO) financing or a universal social insurance fund (Almgren, 2007).

The Economics of Palliative Care

Evidence Pertaining to the Cost Effectiveness of Hospice Care

• Despite the extensive literature on the cost-effectiveness of hospice care relative to curative-oriented conventional care, a clear consensus on findings has been difficult to sustain due to the lack of consistency in methodological approaches (Robinson & Pham, 1996; Scitovsky, 1994).

The most definitive review of the various studies assessing the cost-effectiveness of hospice care relative to conventional care that occurred after the Medicare hospice benefit had become widely utilized concluded that the cost-savings attributable to the benefit was 25-40% during the last month of life, but only 10-17% during the last 6 months of life (Emanuel, 1996). Studies that have been produced during the most recent decade have provided more mixed evidence, some suggesting significant cost savings (Pyenson, Connor, Fitch, & Kinzbrunner, 2004) and others actually finding increased expenditures depending on such factors as age and diagnosis (Campbell, Lynn, Louis, & Shugarman, 2004). Yet, the most current comprehensive study, based on a comparison of 1,819 hospice decedents with a rigorously matched 3,638 control sample, finds that hospice use reduced Medicare program expenditures over the last year of life by an average of $2309 per hospice care recipient, although the maximum cost savings achieved varies significantly by the primary health condition leading to death (Taylor, Ostermanna, Van, Tulskyc, & Steinhauserc, 2007). Significant also, from a policy standpoint, is this study’s findings that in 70% of cases, earlier introduction of hospice care would have resulted in increased savings. Despite some remaining ambiguity as to whether hospice care consistently yields a higher quality of care at equal or less cost across all diagnostic and age groupings, the overall evidence suggests Robinson and Pham (1996) are correct in asserting that the original goals of at least the Medicare program’s hospice benefit have been met: “a choice is available that responds to the needs and concerns of many dying people and their families, at no additional cost to the taxpayer” (p. 417).

Evidence Pertaining to the Cost Effectiveness of Palliative Care

• An evidence base for the cost-effectiveness of palliative care is lacking; large-scale multisite studies are needed.

The literature on the cost-effectiveness of palliative care approaches that fall outside of the more restrictive hospice model is far less developed than that of the cost-effectiveness of conventional hospice care. The most recent comprehensive review of this literature, published in the Journal of the American Medical Association in spring 2008, found only 22 studies that met the inclusion of randomized controlled trials of specialized palliative care interventions included outcome measures for quality of life, satisfaction with care, or economic cost. While the evidence for higher levels of family satisfaction with care was favorable across most studies, the evidence concerning other benefits, including cost savings relative to conventional care, was scant and inconclusive (Zimmermann, Riechelmann, Krzyzanowska, Rodin, & Tannock, 2008). To many advocates of patients and families in the advanced stages of incurable health conditions, the case for the development of specialized palliative care services is self-evident. However, major policy advancements promoting the mainstreaming of palliative care await more evidence from large-scale multisite studies that use well-defined palliative care interventions and comparable outcomes across a range of patient and family system characteristics (Morrison, 2005).

In sum, although the evidence pertaining to the cost-effectiveness of palliative care is as yet scant, the clinically based arguments for a move away from the more restrictive “hospice vs. curative treatment” are compelling. At least in these terms, the grounds for investments in research that identify the most clinically efficacious and cost-effective models of palliative care have been sufficiently established. In absence of such research investments, specifically large-scale studies that link clinical efficacy with cost-efficiency, it may be that innovations in palliative care that are less tied to considerations of cost will still emerge—only to wither away in the face of shrinking health care dollars.

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Document Date: September 11, 2009