Although the terms, disease and illness, are often used interchangeably, there is a distinct difference between them. Disease refers to the pathophysiology of the condition, such as an alteration in structure and function. Illness, on the other hand, is the human experience of symptoms and suffering, and refers to how the disease is perceived, lived with, and responded to by individuals, their families, and their healthcare providers. Although it is important to recognize the pathophysiological process of a chronic disease, understanding the illness experience is essential to providing holistic care.

These patient stories chronicle part of the illness experience. The illness experience is nursing’s domain. Thus, the focus of this book is on the illness experience of individuals and families, and not specific disease processes. While nursing cannot cure chronic disease, nursing can make a difference in the illness experience.

When an individual develops an acute disease, there is typically a sudden onset, with signs and symptoms related to the disease process itself. Acute diseases end in a relatively short time, either with recovery and resumption of prior activities, or with death.

Chronic illness, on the other hand, continues indefinitely. Although a welcome alternative to death in most, but not all cases, the illness is often seen as a mixed blessing to the individual and to society at large. In addition, the illness often becomes the person’s identity. For example, an individual having any kind of cancer, even in remission, acquires the label of “that person with cancer” (see Stigma, Chapter 3). Chronic conditions take many forms, and there is no single onset pattern. A chronic disease can appear suddenly or through an insidious process, have episodic flare-ups or exacerbations, or remain in remission with an absence of symptoms for long periods. Maintaining wellness or keeping symptoms in remission is a juggling act of balancing treatment regimens while focusing on quality of life.

Defining chronicity is complex. Many individuals have attempted to present an all encompassing definition of chronic illness. Initially, the characteristics of chronic diseases were identified by the Commission on Chronic Illness as all impairments or deviations from normal that included one or more of the following: permanency; residual disability; nonpathologic alteration; required rehabilitation; or a long period of supervision, observation, and care (Mayo, 1956). The extent of a chronic disease further complicates attempts in defining the term. Disability may depend not only on the kind of condition and its severity, but also on the implications it holds for the person. The degree of disability and altered lifestyle, part of traditional definitions, may relate more to the client’s perceptions and beliefs about the disease than to the disease itself.

Long-term and iatrogenic effects of some treatment may constitute chronic conditions in their own right, making them eligible to be defined as a chronic illness. Take, for example, the changes in lifestyle required of clients receiving
hemodialysis for end-stage renal disease (ESRD). Life-saving procedures can create other problems. For instance, abdominal radiation that arrested metastatic colon cancer when an individual was 30 years of age contributes to a malabsorption problem years later. Chemotherapy or radiation given to a client for an initial bout with cancer may be an influencing factor in the development of leukemia years later.

Chronic illness, by its very nature, is never completely cured. Biologically the human body wears out unevenly. Medical advances cause older adults to need a progressively wider variety of specialized services for increasingly complicated conditions. In the words of Emanuel (1982): “Life is the accumulation of chronic illness beneath the load of which we eventually succumb” (p. 502).

Although definitions of chronic disease are important, from a nursing perspective we are far more interested in how the illness is affecting the client and family. What is the illness experience of the client and family? Price (1996) suggests that the onus of defining chronic illness, and similarly, quality of life and comfort, should be that of the client’s, as only the client truly understands the illness. However, that aside, the following definition of chronic illness is offered: “Chronic illness is the irreversible presence, accumulation, or latency of disease states or impairments that involve the total human environment for supportive care and self-care, maintenance of function, and prevention of further disability” (Curtin & Lubkin, 1995, pp. 6-7).

Although chronic diseases and conditions exist in children, adolescents, and young and middleaged adults, the bulk of these conditions occur in adults age 65 years and older. Julie Gerberding, former Director of the CDC, stated: “The aging of the U.S. population is one of the major public health challenges we face in the 21st century” (CDC & the Merck Company Foundation, 2007). In 2009 persons older than 65 years of age numbered 39.6 million and represented 12.9% of Americans (AOA, 2010). Since 1900, the percentage of older Americans has tripled. By 2030 there will be 72.1 million adults in the United States who are older than age 65 years, nearly double the current number and roughly 19% of the U.S. population (AOA, 2010). Increased life expectancy and medical advances have contributed to these demographic changes.

With age comes chronic disease. Six of the seven leading causes of death among older Americans are chronic diseases (Federal Interagency Forum on Aging-Related Statistics, 2010). Medicare data document that 83% of all of its beneficiaries have at least one chronic condition (Anderson, 2005). However, 23% of Medicare beneficiaries with five or more conditions account for 68% of the program’s funding (Anderson, 2005, p. 305).

A compounding factor in the physical health of older adults is the presence of depression, the occurrence of which is increasing in the older population. Himelhoch, Weller, Wu, Anderson, and Cooper (2004) analyzed data in a randomized sample of 1,238,895 Medicare recipients, with 60,382 of those clients meeting the criteria for a depressive syndrome. For each of eight chronic medical conditions, Medicare beneficiaries with a depressive syndrome were at least
twice as likely to use emergency department services and medical inpatient hospital services as those without depression (Himelhoch et al., 2004, p. 512).

As people age, it is clear they will have more chronic conditions and will access, if their socioeconomic status permits, an acute care system. How will the needs of these aging adults affect our healthcare delivery system? As mentioned previously, there is evidence of growing inequities in healthcare services that racial and ethnic minorities receive. Combine those inequities with being an older adult, and there is a significant population that will be without quality health care or perhaps any health care at all.

The current healthcare system was largely designed and shaped in the 2 decades following World War II (Lynn & Adamson, 2003). In 1946 Congress passed Public Law 79-725, the Hospital Survey and Construction Act, sponsored by Senators Lister Hill and Harold Burton. The Hill-Burton Act was designed to provide federal grants to modernize hospitals that had become obsolete, owing to lack of capital investment throughout the Great Depression and World War II (1929-1945). The healthcare system was designed to provide acute, episodic, and curative care, and it was never intended to address the needs of individuals with chronic conditions. At the time, little, if any, thought was given to what “future patients” would look like. Generally, our present healthcare delivery system provides acute care effectively and efficiently. However, it is based on a component style of care in which each component or care setting of the system is reimbursed separately, that is, hospital, home care, physician visit. Each component of the healthcare system views the client through its narrow window of care. No one entity, practice, institution, or agency is managing the entire disease, and certainly none is managing the illness experience of the client and family. No one entity is responsible for the overall care of the individual, only their own independent component of care. Typically this approach produces higher costs for the client.

The current healthcare delivery system is disease oriented. Clients fit within the “standards of care,” or the algorithm of a specific disease. With diagnosis-related groups (DRGs), payment is predetermined according to diagnosis as opposed to how many services are used. Think about an older adult in this system: Mr. Jones, with several comorbidities, enters the acute care institution. His admitting diagnosis is pneumonia, but now his diabetes is flaring up along with his hypertension, and his kidneys are not working as well as they should. A specialty physician is treating each of his conditions, but there is no coordinator of his care. He is taking multiple medications, and soon he becomes confused and incontinent. In addition, the focus of the acute care facility is the disease processes of this individual and not the illness experience of the patient and his elderly wife. What does our acute care system do with this older adult with multiple chronic health problems? How does our healthcare delivery system care for Mr. Jones and the multitude of others like him on the horizon?

Healthy People 2020 provides science-based, 10-year national objectives for improving the health of all Americans (http://www.healthypeople. gov). For the 2020 document, there is a renewed focus on identifying, measuring,
tracking, and reducing health disparities through a determinants-of-health approach. The mission of Healthy People 2020 is to:

The topic areas and objectives of Healthy People 2020 are based on four overarching goals: 1) attain high-quality, longer lives free of preventable disease, disability, injury, and premature death; 2) achieve health equity, eliminate disparities, and improve the health of all groups; 3) create social and physical environments that promote good health for all; and 4) promote quality of life, healthy development, and healthy behaviors across all life stages. Topic areas of Healthy People 2020 are listed in Table 1-1. Many of the topics relate to chronic disease and/or prevention of chronic disease.

In 1996 the Institute of Medicine (IOM) initiated a focus on assessing and improving the quality of care in the United States. A number of documents and books have evolved from that initiative. Perhaps the most known of those include Crossing the Quality Chasm (IOM, 2001) and To Err is Human (IOM, 1999). The intent of these books and other documents was to increase awareness of quality and improve the health outcomes of individuals in the nation.

The quest for quality continues. Chassin and Loeb (2011) chronicle the quality improvement journey from Semmelweis, the Hungarian physician who discovered that childbed fever could be drastically cut by the use of hand washing standards in obstetric clinics, to the present day. These authors characterize healthcare quality and safety as “showing pockets of excellence on specific measures or in particular services at individual healthcare facilities” (p. 562). One example provided is that hospitals, on average, provide life-prolonging beta-blockers to heart attack patients 98% of the time (as cited in Chassin & Loeb, 2011). However, they contend that what is missing is maintenance of high levels of safety over time and across all healthcare services and settings.

This complex care causes medical errors. It has been documented that surgical procedures performed either on the wrong patient or at the wrong site on a patient still occur (Stahel et al., 2010). Medicare has termed these events as “never events”—serious, costly errors in patient care that should never happen (Centers for Medicare and Medicaid, 2008). Van Den Bos and colleagues (2011) estimate that the annual
cost of medical errors that harm patients was $17.1 billion in 2008 (p. 596).