Pamala D. Larsen


The prevalence of chronic disease worldwide is similar if not greater than it is in the United States. Chronic diseases are the leading cause of death in the world, accounting for 60% of all deaths worldwide (World Health Organization [WHO], 2011). Twenty percent of chronic disease deaths occur in high-income countries, whereas the remaining 80% occur in low- and middle-income countries, where most of the world’s population resides (WHO, 2011).

There is a wide variety of conditions that are considered chronic, and each condition needs a diverse array of services to care for affected individuals. For example, consider clients with Alzheimer’s disease, cerebral palsy, heart disease, acquired immunodeficiency syndrome (AIDS), or spinal cord injury; each of these clients has unique physical needs, and each needs different services from a healthcare system that is attuned to delivering acute care.

The first baby boomers turned 65 in 2011, and this event has focused increased attention on the capabilities of the healthcare system. The baby boomer generation, in particular, has been vocal about the inability of the healthcare system to meet current needs, let alone future needs.

In 2005 it was estimated that there were 133 million individuals living with at least one chronic disease (Centers for Disease Control and Prevention [CDC], 2010a), and that 7 of every 10 Americans who die each year—or more than 1.7 million people—die of a chronic disease. Chronic disease accounts for one-third of the years of potential life lost before age 65. The data that have quantified the costs from chronic disease are quite sobering as well:

These facts indicate that chronic disease is the nation’s greatest healthcare problem and the number one driver of health care today. With
the aging population and the advanced technologies that assist clients in living longer lives, the costs will only increase.

The influx of baby boomers into organizations such as AARP has distinctly flavored the activities of that and other similar types of organizations. In addition, this new group of seniors is the most ethnically and racially diverse of any previous generation. This well educated, consumer-driven generation wants to be knowledgeable about their conditions and all treatment options. They question their healthcare providers and do not necessarily accept their healthcare advice and treatment options.

In 2000, minorities represented 16% of older American adults. By 2020 that percentage will increase to 24% (Administration on Aging [AOA], 2010). Unfortunately, the healthcare disparities that we have seen in the past regarding ethnic and racial groups are not decreasing, but rather increasing. Three key themes emerged from the 2009 National Health Disparities Report: 1) disparities are common and lack of health insurance is an important contributor; 2) many disparities are not decreasing; and 3) some disparities merit particular attention, especially care for cancer, heart failure, and pneumonia (Agency for Healthcare Research and Quality [AHRQ], 2010a). How will the current system or a future system cope with this diverse group of seniors and their accompanying chronic conditions?

Multiple factors have produced the increasing number of individuals with chronic disease. Developments in the fields of public health, genetics, immunology, technology, and pharmacology have led to a significant decrease in mortality from acute disease. Medical success has contributed, in part, to the unprecedented growth of chronic illness by extending life expectancy and by earlier detection of disease in general. Living longer, however, leads to greater vulnerability to the occurrence of accidents and disease events that can become chronic in nature. The client who may have died from a myocardial infarction in earlier years now needs continuing health care for heart failure. The cancer survivor has healthcare needs related to the iatrogenic results of life-saving treatment. The adolescent, who is a quadriplegic because of an accident, may live a relatively long life with our current rehabilitation efforts, but needs continuous preventive and maintenance care from the healthcare system. Children with cystic fibrosis have benefited from lung transplantation, but need care for the rest of their lives. Therefore, many previously fatal conditions, injuries, and diseases have become chronic in nature.

Disease versus Illness

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.

I put my elbows on my knees and let my forehead sink into my palms. I’m tired. Not just tired … weary. My husband’s catheter went AWOL at one in the morning, and we’ve spent the rest of the night in the ER (How many nights does that make now?

How many hours?) Noise and cold and toobright lights and too-bright student doctors. Repeating Bruce’s history, over and over. (Harleman, 2008, p. 74)

Today is the 19th day in a row that my husband has seen a healthcare provider, and actually a few of those times, he’s seen two different ones on the same day. It’s either radiation therapy, receiving IV fluids and/or replacement potassium, an IV antibiotic for a resistant infection, receiving blood as an out-patient, a mishap with the jejunostomy tube … something every day. Will this ever stop? Will we ever have a normal life again? Right now I don’t even remember what normal is.

—Jenny, wife of a 63-year-old cancer patient

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.

Acute Conditions versus Chronic Conditions

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

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).


This section addresses the influence of chronic illnesses and impact on society in general.

The Older Adult

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 Healthcare Delivery System

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

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:

  • Identify nationwide health-improvement priorities.

  • Increase public awareness and understanding of the determinants of health, disease, and disability and the opportunities for progress.

  • Provide measurable objectives and goals that are applicable at the national, state, and local levels.

  • Engage multiple sectors to take actions to strengthen policies and improve practices that are driven by the best available evidence and knowledge.

  • Identify critical research, evaluation, and data-collection needs.

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.

Quality of Care

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.

Moreover, the available evidence suggests that the harmful error in health care may be increasing. As new devices, equipment, procedures, and drugs are added to our therapeutic arsenal, the complexity of delivering effective care increases. Complexity greatly increases the likelihood of error, especially in systems that perform at low levels of reliability. (Chassin & Loeb, 2011, p. 563)

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).

Table 1-1 Topics of Healthy People 2020

Access to health services


Adolescent health*

Immunization and infectious diseases

Arthritis, osteoporosis, and chronic back conditions

Injury and violence prevention

Blood disorders and blood safety*

Lesbian, gay, bisexual, and transgender health*


Maternal, infant, and child health

Chronic kidney disease

Medical product safety

Dementias, including Alzheimer’s disease*

Mental health and mental disorders


Nutrition and weight status

Disability and health

Occupational safety and health

Early and middle childhood*

Older adults*

Educational and community-based programs

Oral health

Environmental health

Physical activity

Family planning


Food safety

Public health infrastructure


Respiratory diseases

Global health*

Sexually transmitted diseases

Health communication and health information technology

Sleep health*

Healthcare-associated infections*

Social determinants of health*

Health-related quality of life and well-being*

Substance abuse

Hearing and other sensory or communication disorders

Tobacco use

Heart disease and stroke


Source: Healthy People 2020. Topics and objectives index. Retrieved July 24, 2011, from:

* New Topic Area

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Jun 29, 2016 | Posted by in NURSING | Comments Off on Chronicity

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