Abstract and Keywords
There is a paradigm shift occurring in medicine, from models focused on treating acute illnesses to those concerned with managing chronic conditions. This shift coincides with the higher prevalence of chronic illnesses resulting from factors such as lower mortality from formerly fatal illnesses and an aging population. The chronically ill do not fare well in an acute care model, and as a result, it has become imperative to develop new models effective for these chronic conditions. These new care models will require comprehensive, coordinated case management, an activity in which social workers can play a significant role.
Keywords: chronic illness, phase-based intervention, traumatization, coordination of care, persistent acute illness, aging population, managed care, Fennell Four Phase Treatment Model, comprehensive case management, chronicity
History and Context
There is a paradigm shift occurring in medicine. With the greatly increased prevalence of chronic illness, it has become imperative to develop new models of care that will be effective for these chronic conditions. These new care models will require comprehensive case management, an activity in which social workers can play a significant role (Fennell, 2007).
In the past the medical profession has focused primarily on acute illnesses because they were dramatically obvious and had the potential to be cured. Once an acute disease was diagnosed, doctors could apply whatever treatment had become appropriate, and the patient either recovered or died. Chronic illnesses have always existed, of course, but until the late 20th century, most medical practice attended to illnesses that had a recognizable onset, course, and conclusion.
In this opening decade of the 21st century, however, significantly more attention is being paid to chronic illness. This is largely due to the enormous increase in the number of people judged to have a chronic illness. Advances in medicine in the developed world have made it possible to stabilize the condition of many patients with serious acute illnesses, even though these interventions may not effect a cure. Examples would be those with cardiovascular and respiratory conditions, survivors of stroke and cancer, those with obesity problems and diabetes, and individuals on dialysis. Other patients now classified as having a chronic illness are the huge cohort of individuals with a “persistent acute illness” such as HIV or AIDS. Such patients reclassified as having a chronic rather than an acute illness now account for the greatest numbers of those with chronic illness. In the less economically developed world, many of these conditions still exist as acute conditions, and it will take distinct improvements in the health infrastructure of those countries to arrive at the situation existing in the United States.
In addition, as people in the technologically advanced world live longer, most individuals will eventually either suffer from a traditional chronic illness or survive an acute illness in a condition that requires persistent attention. Many will suffer several conditions at the same time. Many aspects of even healthy old age can resemble those of living with chronic illness. With the Baby Boom generation about to enter old age, the numbers of people so afflicted will increase significantly.
There are, therefore, essentially four groups of the chronically ill: those with the traditional chronic illnesses such as multiple sclerosis or lupus; those who survive an acute illness either with lingering symptoms that may be recategorized as a new illness or with conditions that require ongoing care, including cardiovascular diseases; those with persistent acute illnesses such as HIV and AIDS; and the aging population, who present a variety of illnesses (Fennell, 2007).
In the United States, chronic diseases are the leading cause of death and disability (CDC, 2004). Approximately 1.5 million people (two-thirds of all deaths) die of a chronic condition such as heart disease, stroke, cancer, and diabetes. Cardiovascular disease affects about 79 million Americans; diabetes, 20 million; kidney disease, 19 million; Alzheimer's disease, 4 million. Arthritis and other rheumatic conditions affect 70 million adults annually and are the leading cause of disability among U.S. adults. It is estimated that 1.5 million people have lupus; 400,000 have multiple sclerosis; and more than 1 million have chronic fatigue syndrome (CDC, 2002, 2006; Lupus Foundation of America, 2006; National Multiple Sclerosis Society, 2005). The most common condition in children is asthma (American Academy of Allergy, Asthma and Immunology, 2006). The list goes on.
About 40% (369 million of 910 million) of all doctor's visits in the United States are for chronic conditions, and the cost of medical care for persons with chronic diseases accounts for 78% of the total medical care expenditure in the nation (Hing, Cherry, & Woodwell, 2006; National Alliance for Caregiving and AARP, 2004). And this figure does not include costs that are not directly associated with medicine, but are directly attributable to needs stemming from the chronic illness.
Traditional chronic illnesses manifest differently from acute illnesses. They frequently do not have a clearly identifiable onset; instead, they are usually a nebulous collection of symptoms that emerge over time. The symptoms change; they also ebb and flow, increasing or deceasing in severity, sometimes remaining the same. Chronic illnesses may be experienced as either static or dynamic. Static illnesses ar those which show consistent symptom and treatments longitudinally, while dynamic illnesses have more unpredictable symptoms and cycles of relapse and remission (Fennell, 2003). Some scholars also categorize chronic illnesses as progressively disabling such as multiple sclerosis, and non-lethal waxing/waning, like fibromyalgia (Sperry, 2006). Often it is not possible to measure the symptoms by standard tests or with instruments, and thus health professionals must rely on the patient's self-reporting, which the profession frequently regards as unreliable and nonquantifiable. Chronic illnesses also tend to affect several different body systems at the same time. The impact of chronic illness on patients' physical, emotional, and social life is persistent and affects their reporting, compliance, and coping.
While illnesses are often defined by disease category, as with the International Classification of Functioning, Disability, and Health from the World Health Organization (2008), the nature of chronic illness may be better understood by its impact on symptom clusters or functional areas. Functional areas include pain, fatigue, sleep, thought processes, movement, and mood (Fennell, 2012). Falvo (2005)) also includes sexual functioning. Chronic illness patients may suffer traumas in addition to the actual physical manifestations of the illness. There is the trauma produced by a prolonged diagnosis period, as well as the trauma of the actual onset or diagnosis itself. There is the stigmatizing response of family, society, and workmates as they become frustrated by the unpredictability of symptoms and by chronicity because the patients never “get better” and do not return to fulfilling their previous responsibilities. The chronically ill may also suffer from premorbid and comorbid traumas. They can also suffer trauma caused by responses on the part of the medical establishment, which can range from impatience to disbelief. Moreover, the repeated exposures to the medical establishment that chronic illnesses occasion increase the likelihood of such trauma (Fennell, 2004).
Many problems faced by those with chronic illness—especially after medical interventions have stabilized their condition—involve reactions to their condition and its economic consequences. Entire family patterns often need to be reorganized. Patients may need ongoing care just to manage the activities of daily living. Some may not be able to work or can work only at greatly reduced hours. Medical costs become an issue, even if patients are covered by medical insurance.
Chronic illnesses affect segments of the population differently. Certain diseases are more prevalent among women than among men or among different ethnic or racial groups (Anderson). In addition, patients' experience of chronic illness is differentiated by their gender, ethnicity, religious or philosophical belief, social and economic status, and the geographic region of the country in which they live, with its particular political and economic environment.
It can be argued that, by their very nature, chronic illnesses were, in the past, unsatisfactory for professionals to treat because patients were not cured. They were, at best, maintained, and often not very satisfactorily. Diseases such as rheumatoid arthritis, lupus, multiple sclerosis, and chronic fatigue syndrome are among the many that have always been chronic.
Patients with chronic conditions can fare poorly in the acute-care model of care delivery. Effective care usually requires longer visits than are common in acute care. In treating chronic illnesses, the same intervention may change in effectiveness depending on when in the course of the illness the intervention occurs. Necessary interventions can require the input of multiple disciplines, interdisciplinary teams, and to be effective, they require close, careful coordination and active patient and, at times, family participation (Fennell, 2003).
Historically, there has been little coordination across the multiple settings, providers, and treatments of chronic illness care. Several variations of managed care have emerged in the past decades in an effort to improve care, reduce unnecessary service utilization, and control spiraling costs, but managed care has not achieved truly coordinated care. In actual operation it appears to emphasize fiscal goals. Managed care does not address the complexity of chronic conditions, and, in the interests of cost-cutting, tends to reduce time with patients rather than increase it (Ware, Lachicotte, Kirschner, Cortes, 2000). At the present time, moreover, any care model must work within Medicare and Medicaid guidelines from the federal government and other programs at the state level, with their documentation and procedural requirements.
Roles of Social Work
Given the number and types of psychosocial issues that emerge with chronic illness, social workers have an essential role to play in the care of patients and their families.
In the latter part of the 20th century a number of pioneering researchers began to investigate the special issues that they found existed in the assessment and treatment of the chronically ill. Nurse researchers were often on the front lines of actual care for patients with ongoing treatments for conditions such as diabetes or renal failure (Baker & Stern, 1993; Burckhardt, 1987; Lubkin & Larson, 2002; Wellard, 1998). They recognized that their patients experienced a trajectory of “phases,” and that during some of these phases the patients responded quite differently to the same interventions.
At about the same time, many individuals suffering from chronic illnesses gave detailed accounts of their experiences and made significant suggestions about how to manage living with chronic illness (Register, 1987; Wells, 1998). Associations proliferated for those with specific conditions (Sjögrens syndrome, peripheral neuropathy, and so forth), and these groups engaged in advocacy work, acted as clearinghouses for information, and began funding research.
Wagner developed a Chronic Care Model that provides a holistic framework and methodology for transforming health care so that patients receive coordinated care from a trained interdisciplinary health-care team, that includes a planned follow-up (Wagner, 1998). The Stanford Self-Management Program is a community-based self-management program that helps people with chronic illness gain self-confidence in their ability to control their symptoms and manage how their health problems will affect their lives (Lorig, Sobel, & Stewart, 1999). Partnership for Solutions, a Johns Hopkins and Robert Wood Johnson collaborative, conducts research to improve the care and quality of life for individuals with chronic health conditions (Anderson & Knickman, 2001).
In the late 1970s and early 1980s, stage- or phase-based models began to be developed. Prochaska and his colleagues described a model of behavior change as a process rather than an event (Prochaska, DiClemente, & Norcross, 1992). They advocated assessment and treatment based on the patient's stage in the process. Fennell, working on the experiences of imposed change (such as illness, grief, or trauma), developed the Fennell Four Phase Treatment Model (Fennell, 2003).
This work recognized that time itself—the changing actualities and perceptions that chronic illness patients have of their illness and the changing interventions required as time passes—determines how chronic illnesses can be best managed. The conceptual frameworks that appear to offer the most promising results are those that focus on where patients are on a time continuum—that is, what phase they are in. Moreover, although the phases were first utilized in treating patients with traditional chronic diseases such as multiple sclerosis and lupus, they apply equally well to those who survive a stroke, manage a persistent heart condition, or undergo regular dialysis.
To achieve real-life changes in all the domains of a patient's life requires a comprehensive case management approach in addition to clinical treatment (Fennell, 2007). Given their expertise in just such an approach, social workers have an essential role to play in the treatment of chronic illness. As professionals well acquainted with systems, they are uniquely positioned to help patients comprehend and manage all their intervention needs and their behavioral and attitudinal changes. In addition, social workers are attuned to the differences that socioeconomic group, race, ethnicity, and gender can add to this mix (Alito, 2007).
One effective treatment model assumes the involvement of multiple body systems in chronic illness and addresses both the complexity and the chronicity of the illness (Fennell, Jason, & Klein, 1998). The model recognizes the involvement of four phases in patients' lives: crisis, stabilization, resolution, and integration. Within each phase, four domains of patient experience are addressed: the physical or behavioral, the psychological, the social and economic, and the philosophical or spiritual. Without comprehensive understanding that considers the universe of the chronic condition, it is not uncommon for a vicious cycle to occur in which the patient moves perpetually from crisis to stabilization and back to crisis again. Taking a systems-based, multidisciplinary approach that “maps” the chronic illness process for both patients and clinical providers, it matches best medical practice to phase. This enhances compliance with and effectiveness of treatment, thereby saving time and resources. The concept that patients' experience may need to be understood as a function of the particular phase of the illness has been supported by research (Fennell et al., 1998; Jason et al., 2000a, 2000b).
Comprehensive case management is necessary to continually assess the patient's self-management capacities and provides a “world view” for patients, their families, and their social units. Where possible, case managers train patients to manage their own care. The work of the case managers also helps clinicians target resources to current and ongoing problems and concerns. It focuses on four areas: disability, treatment and triage support, psychological support, and matching intervention to phase.
Disability is an extremely important issue for those with chronic illnesses, and it is poorly understood by many in the health-care field. It is incumbent on the case manager to make a disability assessment, including a thorough record review, as soon as possible. The case manager also refers the patient for related legal, medical, and auxiliary social services, as necessary; prepares the patient and family for medical and psychological disability assessment; and readies the patient for court proceedings, if required.
Treatment and triage support proceeds out of patients' ability to understand their medical situation and to network with the multiplicity of disciplines necessary to treat their cases. Psychological support comes in the form of the manager orienting patients to and educating them about chronic illness. This support also includes working to improve patients' agency, returning to them the locus of control in their lives, making them aware of and able to deal with societal issues, and developing in patients a sophistication with regard to the health system. Matching intervention to phase alters as patients negotiate the phases (Fennell, 2003, 2007). In the first, or crisis, phase where the clinical goal is trauma and crisis management, the case management goal is to establish a case management focus. This includes restructuring the activities of daily living, engaging in family case management, assisting patients in navigating the health-care system, intervening in the workplace if necessary, and acting as the patients' advocate.
In the second phase the clinical goal is stabilization. The case management goals are collection of data from patients and activity restructuring. With the help of the case manager, patients assess and restructure their activity levels and develop new parameters and norms. The case manager continues to help with family case management, negotiation of the health-care system, intervention with the employer, and patient advocacy.
The third phase, resolution, has as its clinical goal the development of meaning and patients' construction of a “new self.” The case management goal is helping patients develop self-management skills. Patients learn to monitor their activities, coordinate their medical care, become their own health-care advocates, and in general assume advocacy for themselves in the world at large.
Phase four has integration as its clinical goal, and the case management goal is to deepen patients' self-management skills with established criteria for data collection and self-monitoring, which is periodically reviewed by the clinician.
Challenges, Future Trends, and Ethical Considerations
As chronic illnesses become more prevalent, government, the health-care profession, and reimbursement organizations will need to adapt their policies and practices to the new chronic illness era. This changing environment will present significant ongoing challenges to all concerned—patients, members of the health-care professions, government—to achieve arrangements for health care that are efficient, encompassing, and ethical.
One essential ethical and financial consideration in chronic illness management is the phenomenon of chronicity itself; clinicians and health-care systems must acknowledge the reality that they will be working with patients to manage their illnesses and disabling conditions intermittently across the life span. Although self-management has often been advocated as a lower-cost method for management of chronic illnesses, recent research has shown that self-management has limited efficacy, and therefore there remains an essential and ongoing role for clinicians in chronic illness treatment and management (Griffiths et al., 2007). An integrated clinical treatment and case management approach captures the essential elements of experience that can determine whether interventions will be successful. It particularly points to the necessity of solving problems—familial, social, economic, and philosophical, among others—that are rarely part of the conventional medical treatment model. Teamwork is essential among a broad array of different professionals, all committed to involving the patient whenever possible in the process (Abramson & Mizrahi, 2003). The case management approach seems best suited to accomplish this in a successful, efficient, and ethical manner.
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