CHRONIC ILLNESS AND CHRONIC CARE

This entry traces the ethical topography and presents concepts entailed in chronic illness and chronic care. There is no authoritative definition of chronic illness or chronic care. However, a consensus definition for purposes of this entry can be found on the Public Broadcasting System (PBS) web site (Fred Friendly Seminars, 2001b), where chronic illness is defined as "a condition that lasts a year or longer, limits activity, and may require ongoing care." Some persons describe chronic as "illnesses or impairments that cannot be cured" (Institute for the Future, p. 260; Summer, p. 2). An incurable chronic condition can be manifest at birth, as in Down's syndrome.

Chronic illness is contrasted with acute episodes of illness or injury that will either result in death or will be treated and the person restored to health. Although chronic diseases differ from acute diseases, they can have acute episodes or flare-ups. Persons with chronic conditions may experience accidents or comorbidity in addition to their ongoing problem(s).

Paradoxically, as various public health measures, pharmacological agents, and other medical interventions become more effective in either preventing or curing diseases and postponing death, the number of persons with chronic conditions increases in both absolute and relative numbers. "Over the past century, the economically more developed countries of the world have gone through considerable change in their population structure and the types of diseases which afflict them—the so-called demographic and epidemiological transitions" (Harwood and Sayer, p. 1).

Care of a person with chronic illness should involve productive interactions between patients and providers; the latter may include medical and social support. Responsive providers and services are key in such care, as are the financial resources to enable the person to utilize them. Three elements seem to differentiate sound chronic care, at least in emphasis, from ordinary, good medical practice in general: continuity over time; management of any accompanying frailty and dependency; means to pay for the extraordinary costs of drugs, prosthetic devices, and care both in the home and in alternate living situations.

Three Related Concepts

PROGRESSIVE INTERMITTENT FRAILTY. Frailty can be seen as a condition at a given point in time and as a process over time. It denotes a condition in which a person has difficulty with activities of daily living and is vulnerable to various assaults upon his or her person both from within, (e.g., organ failure) or without (e.g., falls). Frailty, especially in the elderly, often continues over time in a progressive fashion with periods of remission and exacerbation until the person becomes substantially dependent and dies.

Persons who are frail may have difficulties with activities of daily living either on a temporary or an ongoing basis. Frailty often accompanies chronic illness, though not all chronically ill persons are frail. Some frailty results from general system(s) failure that is associated with age and the gradual molecular deterioration accompanying it; other frailty can be associated with a transitory illness or trauma.

DEPENDENCY. Dependency is a state in which a person requires the assistance of others. It may be temporary or permanent, intermittent or continuous. It may or may not be associated with chronic illness. Chronic illness, depending on severity, may or may not create a dependent state.

NATURAL DEATH AND DYING. All will die. Dying occurs in different modes. It may be caused by sudden organ failure or by disease or infection. A relatively new phenomenon is the increasing number of persons with serious chronic illness at the end of life. Certain patients function quite well for a time, with substantial decline in the last few weeks before death, typical of cancer. Others experience a less predictable course, with periods of disease exacerbation interspersed with periods of higher functionality, as in organ system failure of the heart or lung. Some go through a drawn-out course with early loss of function and incremental decrements in function and vigor over many months or years before death, characteristic of frailty and dementia (Lunney, Lynn, and Hogan; and Lynn).

As the trajectory toward death becomes more apparent, even if still somewhat unpredictable as to its exact time, specific medical, psychological, and spiritual interventions become central, emphasizing physical and emotional comfort rather than seeking to cure the underlying cause.

Seeking to Understand the Challenge

Given the lack of an agreed upon definition of chronic illness, it is difficult to estimate with any precision the aggregate numbers and costs. In addition to the confounding element of what to include as a chronic condition, each possible candidate has its own life course and associated costs. However, all agree there are large numbers of people with chronic illnesses. In fact, virtually all who die in old age will have one or more chronic conditions.

Having noted the imprecision of definitions and insurmountable difficulty of quantifying the extent and costs of chronic illness, some representative statements can contribute to an understanding of the dimensions of the problem:

• Almost one-half of the U.S. population of 276 million people in the year 2000 had a chronic condition in some form (Partnership for Solutions, 2001).
• In 2020, about 157 million people will live with chronic conditions, and about 81 million, more than half of these people, will have multiple chronic conditions (Partnership for Solutions 2002a, pp. 6–7).
• In one listing, thirty-seven conditions are characterized as chronic illnesses (Fred Friendly Seminars, 2001a). There may be more.
• Each chronic condition has its own etiology and course history and is experienced by a person unique in his or her personhood and cultural/social milieu.
• Each person has greater or less access to, or is in command of, a different array of help.
• Chronic conditions may be more or less debilitating at different parts of the course of theillness.
• About 60 million people experience comorbidity, and more than 3 million of these have five chronic conditions (Partnership for Solutions, 2001).
• Some chronic conditions can be ameliorated for long periods of time with medications and/or prosthetic devices; others may have a decided trajectory in which increasing, albeit sometimes periodic, disability requires hands-on assistance or a more supportive environment.
• The various treatment regimens for people with multiple chronic conditions can interact to diminish health and increase disability (Partnership for Solutions, 2002b).
• Some chronic conditions can render a person more vulnerable to disease or accidents.
• Not only do poor and disadvantaged people experience greater prevalence of chronic conditions, those who are unemployed, less educated, and uninsured suffer more from these conditions (Bethell, Lansky, and Fiorillo).
• According to a 1998 Medical Expenditure Panel Survey, 78 percent of healthcare dollars was spent on care of chronic conditions for noninstitutionalized persons, and approximately 58 percent of healthcare dollars was spent on the 21 percent of those suffering from more than one chronic condition (Partnership for Solutions 2002a, pp. 17 and 19).

Commonalities in Chronic Illness

The conceptual embrace of chronic illness has become so broad and varied that the utility in using this concept to inform policy may be compromised. However, all chronic conditions have common threads. Chronic conditions intrude upon the quality of life and life patterns of individuals. They not only alter the life of the persons closest to the afflicted individuals but many with whom these individuals come in contact on a daily basis, for example, employers, fellow employees, neighbors, and even strangers. Chronic illness sufferers need extra, even in some instances extraordinary, resources to ameliorate the effects of their illnesses, and this in turn generates costs to society either in the form of risk-sharing schemes such as insurance (public or private) or through welfare/charitable support.

Ethical Topography of Chronic Illness

Chronic illness occasions decisions that have an ethical component since it constitutes an interruption for a significant time in the life and life plan of an individual, and by extension, that of those who are closely associated with the individual. Furthermore, it constitutes a societal issue because of the costs involved.

DOMAINS. A chronic illness evokes responses with ethical implications in various domains. Each choice has implications for the well-being of the person with the chronic condition, those who are part of his or her primary social network, and the broader society.

THE INDIVIDUAL. While one must be cautious in blaming the victim, some, but by no means all, chronic illnesses have their origin in lifestyle choices. At the outset of ethical reflection, one must consider individual behavior not only because of a fundamental responsibility to self but also because of its consequences to others, both proximate and remote. For example, 80 percent to 90 percent of chronic obstructive pulmonary disease (COPD) cases are the result of long-term smoking (Ames). A substantial number of cases of human immunodeficiency virus (HIV) disease are caused directly or indirectly by unsafe sexual activity or needle sharing by drug abusers. Refusal to wear seat belts or helmets increases the risk of incurring catastrophic, debilitating injuries.

Regardless of the etiology of the chronic illness, the person suffering with it faces ethical choices that have an impact on his or her well-being, as well as that of other individuals and society in general. For example, one with chronic illness can be compliant with medical regimes or not, behave in a risky manner or not, and make treatment choices that can influence the quality and length of life and entail costs.

THE PERSON'S SOCIAL NETWORK. Depending on the severity of the illness and the moral/psychological bonds, the lives of family and psychologically significant others become a party to the disease. Each person impacted confronts ethical choices on how he or she will respond to the person in need.

Friends, neighbors, and even strangers are actors and reactors since physical proximity creates a moral field within which responses are evoked. Persons may or may not come to the assistance of others when that assistance is needed in a particular instance or over time. The need of the person, the relationship to the other, the inconvenience or costs (opportunity, monetary and psychological), and the availability of other assistance all enter into the ethical equation facing the potential helpers.

THE WORK ENVIRONMENT. Many persons with chronic conditions are employed or employable. While the Americans with Disabilities Act requires reasonable accommodations in the workplace, ethically based attitudes and interactions with co-workers will either enhance or detract from the well-being of persons with chronic conditions. For example, at one end of the spectrum are those co-workers who consistently respond with grace and enthusiasm from day to day. Their personal principles would propel them to risk their lives to help another co-worker in a wheelchair exit the building in an emergency. At the opposite end are those who frequently regard chronically ill co-workers with irritation or agitation; in an emergency situation, compromised coworkers with chronic conditions would not get their attention.

PRIVATE SECTOR POLICY. Insurance. Insurance in the private sector is driven mainly by marketplace forces and actors. It is also subject to both ethical considerations and to incentives and disincentives provided through public policy for taxation of employee benefits and for the regulation of insurance markets.

Insurance involves the sharing of risk. Paying a certain cost (premium) makes access to care affordable and possible for an expensive event that will occur in a group but not to all members of the group. Persons choose certainty over uncertainty and presumably pay premiums that they and their insurers hope will total considerably less than the costs associated with untoward events. However, when these events have already occurred or their imminent onset is highly probable (e.g., when a person over sixty-five pays his or her first premium), then insurance becomes a method of financing burdens that is unlikely to be profitable.

Insurers are economically motivated to exclude very sick and high-risk persons from coverage in order to lessen the cost of premiums and increase their corporate margins. Often they attempt to exclude persons with pre-existing conditions entirely, although this is more difficult to do under 2003 federal law. In lieu of such an option, actuarial considerations dictate a higher premium, which places a burden on all covered persons.

Faced with competitive pressures, major insurers are structuring boutique-type policies for healthcare, and to a lesser extent, long-term care, so that employers can offer lower premiums to presumably low-risk employees. This results in more costly options for those at higher risk. Some employers are moving toward a contribution to the individual for the purchase of insurance in the marketplace rather than offering an employer-sponsored plan. Presumably this will make the purchase of affordable insurance more difficult and costly for higher-risk persons. Such trends disadvantage chronically ill persons because they consign them to high-risk, high-cost pools.

A subset of ethical and public policy issues arises with chronic illnesses and conditions that have been associated with lifestyle choices, for instance, from motor vehicle accidents in which appropriate safety devices were not used (helmets or seat belts) and some AIDS patients. Should such persons be afforded benefits born by others because of their risky behaviors?

While these scenarios are the very stuff of free enterprise, they are not without ethical implications for insurers, group purchasers, and regulators.

Genetic testing. The field of genetics is in its infancy and holds promise in the prevention and treatment of all diseases, especially those that tend to be chronic. However, the knowledge gained by testing may identify the person as being at such risk of a particular chronic condition that he or she becomes uninsurable and, despite the absence of any indication of the disease, unemployable.

"At present the predictive value of most genetic tests is limited" (Anderlik and Rothstein, p. 425). These authors find scant evidence of discrimination to date on the basis of genetic testing in health insurance markets in the United States. This finding holds for states that do and those that do not regulate the use by insurers of genetic information. However, they note a particular problem for persons seeking long-term care insurance as genetic testing improves to permit discrimination among risks: Medical underwriting of long-term care insurance (in contrast to the provision of social insurance) could discriminate against persons with serious chronic disease because coverage is "directly tied to the provision of necessary health care" while the "premium structure … is based on mortality risk" (Anderlik and Rothstein, p. 425).

This potential for future discrimination as genetic testing is perfected is a concern in the insurance field, the popular press, and other countries. Dr. John W. Rowe, Chairman and CEO of Aetna, called for legislation and industry-wide guidelines to promote genetic testing and counseling with provisions for strict confidentiality. Furthermore, he advocated a prohibition of the use of genetic information to establish risk selection or classification (Aetna, Inc.). An editorial in USA Today on August 20, 2002, ends with "Medicine is giving people a chance to gaze into their futures—and maybe change them. But until their genetic secrets remain just that, the scientific breakthroughs could cause more problems than they solve" (USA Today, p. A.10). In 2001, the Human Genetics Commission of the British House of Commons "concluded that it was important to establish a clear and defensible regulatory system which not only balances the interests of insurers, insured persons, and the broader community but also enjoys the confidence of the public" and thus "decided to recommend to Government an immediate moratorium on the use by insurance companies of the results of genetic tests."

PUBLIC POLICY. The costs associated with chronic illness, the possible limitations of earning capacity, and the way others may treat those who have some limitation all make governmental action an important factor. Public policy affects not only access to needed services but continued participation in the life of the community for chronic illness sufferers.

Public policy emanates from the democratic process with its often messy and contentious elements. However, in many instances it finds justification, if not its origins, in widely held ethical perspectives. Among these public values are the convictions that people should not be denied opportunity because of particular characteristics and that the most vulnerable should have at least basic dignity.

Discrimination. Government has had a role in protecting the rights of individuals, especially those most at risk as evidenced in affirmation of voting rights, fair housing laws, and nondiscrimination in employment and public accommodations, as well as opportunities for participation for the disabled. While these result immediately from legislation and court decisions, they have foundation in a public ethic.

Income support. The costs often involved with chronic illness make governmental support a vital aspect for the wellbeing of those afflicted.

Based both on pragmatic and ethical considerations, the U.S. has enacted programs of social insurance requiring risk sharing and consequent creation of entitlement to meet basic needs in those areas in which people would be unable or unwilling to make prudent economic decisions about future need.

Social Security was enacted to assure a floor of income for those who cease to work because of age (1934) or disability (1956). It assures continued participation in the economy and offers support for those unable to work and their survivors. Social Security mandates equal contributions by employees and employers to a premium during employment in view of a possibility of unemployment. It offers a greater return to those who have modest employment earnings than to those who have been fortunate enough to have better earnings.

It has been United States policy since the 1930s that income in retirement should be considered to have three sources: Social Security, private pensions, and personal savings. There is growing evidence that income from these sources will be inadequate to meet basic living costs (including the costs of managing chronic illness) for most persons born between 1946 and 1964 who are living alone, and especially the oldest persons (Employee Benefit Research Institute [EBRI] Education and Research Fund and Milbank Memorial Fund; Dugas). The causes of this shortfall, which will be catastrophically expensive for society, include:

• structural problems in the private pension system;
• projected shortfalls in the Social Security Trust Fund that are tempting policy advocates to propose remedies that put individuals at higher risk;
• the difficulty most Americans have in both saving and maintaining their standard of living during their working years; and
• the periodic decline and routine volatility of the financial markets in which pension savings are invested.

Each of these causes raises ethical issues.

Financing and organizing care during acute episodes of illness. Most of the health insurance offered by government (Medicare and coverage of public employees most importantly) and the private sector (individual and group coverage) is derived historically from plans to cover infectious disease, injuries, pregnancy and childbirth, and episodes of chronic degenerative diseases requiring hospitalization and medical specialty services. Although this coverage has evolved gradually to include many services for managing chronic illness, payment is still driven mainly by diagnosis and is more generous for invasive procedures than for either counseling or outpatient drugs (Fox). As a result, most persons who experience progressive intermittent frailty (which means, in fact, most persons) are at high risk of receiving care that is discontinuous, fragmented, and inappropriate.

Financing and organizing long-term care. The United States has devised a vast system of long-term services based on the organizational concept of the nursing home and the financing assumption that individuals and families will pay for care with government serving as the payer of last resort. This system is a logical counterpart of a health insurance system created to respond to the most serious acute manifestations of disease. Nursing homes, the dominant institutions, are stripped down (or not so stripped down) hospitals in which persons wait, secure against injury but isolated from their community, until the next acute episode of illness returns them to the acute care health sector. Since waiting is deemed a residual activity, it is logical for individuals to pay for it out of income and savings unless (or until) they are too impoverished to do so. Then society (through Medicaid, Supplemental Security Income, and charity) pays the cost. This model for organizing and financing long-term care, like the health insurance model described in the previous paragraph, is deeply flawed: conceptually and financially, and many have argued, ethically. There is growing analysis and advocacy on behalf of alternative models for organizing and financing long-term care that take account of the inevitability of progressive intermittent frailty for most people and recognize the well-documented desire among Americans to spend as much of their later lives as possible in homelike, minimally restrictive settings (U.S. Department of Health and Human Services). One of these models is the Program for All-Inclusive Care of the Elderly (PACE). PACE is a risk-sharing system that provides for all acute, long-term care, and hospitalization needs of frail elderly participants in one program. Participants pay a capitated fee rather than fee for service with their Medicaid and Medicare entitlements. Most of the PACE participants can still live at home or in a community-based setting and are transported to the program's day health center one or more times a week for care of their medical and social needs. To provide this "all-inclusive" care, the health center is staffed with an interdisciplinary team (Centers for Medicare & Medicaid Services, 2002). Another example allowing for various flexible state-designed alternative models is the Medicaid Home and Community Based Services (HCBS) 1915(c) Waivers Program. The U.S. government allows the states to provide HCBS waiver programs for certain segments of their Medicaid-eligible population. One segment is the elderly. Under an HCBS waiver program for care of the elderly, a state can ask the federal government for waivers of certain Medicaid requirements so that Medicaid benefits can be provided in the home or a community-based setting as well as in an institution (Centers for Medicare & Medicaid Services, 2003).

Research. Vast and increasing amounts are spent on research pertinent to chronic disease in the United States, primarily by the federal government, through the National Institutes of Health (NIH) and the Veterans Health Administration (VA), and by the pharmaceutical industry. The two most prominent objects of this research are the mechanisms of chronic disease and the development of drugs and devices to treat, cure, and manage them. Consumer and professional groups are prominent advocates of increased public research budgets for particular diseases, often with overt or covert support from the pharmaceutical industry and manufacturers of medical devices. However, enthusiasm for developing and testing new interventions distracts attention and resources that could be invested in new randomized controlled trials of existing interventions, research on head-to-head comparisons of competing treatments, and replacement of open or arbitrary drug formularies with preferred drug lists based on systematic reviews employing the methods of research synthesis. This hopeful and lucrative focus on new ways to prevent, cure, and manage disease has made it difficult for advocates of the rapidly developing science of research synthesis to make their case. This recently emerged area of research makes it possible to evaluate more confidently than ever before the effectiveness of health and social care interventions, including drugs, devices, diagnostic tools, and methods of organizing services (Chalmers et al.).

Social Solidarity and Concern for "The Other"

While individual autonomy is inherent in the notion of dignity, humans are social beings who inherit from the past, live in community in the present, and perceive themselves as having responsibility to the future. Humans are free to pursue their own goals as long as they do not interfere with others, a negative right. There is a generally recognized corollary that humans live in community with a positive obligation to contribute to the common good and share others' burdens. Personal responsibility is indicated not only for the sake of the person but because "no man is an island, " and his or her well-being or disorder has social ramifications. Maintenance of health and function is significant not only to the individual but also to all who are part of his or her social network. Aristotle has been credited with teaching that a just society is one in which burdens are shared by equals equally and unequals unequally in accord with capacity and need.

The pluralistic nature of contemporary society makes it easier to identify when and where ethical issues occur than to apply universally accepted approaches to their solution. Yet, at least at the societal level, decisions have and will be made through the democratic process, largely driven by self-interest but often with appeals to a sense of fairness and decency. However, a recent study of policy makers' use of ethicists' advice concluded that persons who emphasize ethics "will always be disappointed by the politics of policy making in any countries that are fit to live in" (Fox and Klein). On the more personal level, however, such decisions are made, for better or worse, on a daily basis, either easing the burden of chronic illness or leaving the chronically ill person ever more isolated in his or her distress. Decisions of fairness and decency and those that ease the burden become ever more vital as the number of people affected by chronic illnesses increases in the first half of the twenty-first century.

charles j. fahey

daniel m. fox

SEE ALSO: Aging and the Aged; Care; Dementia; Disability; Healthcare Resources, Allocation of; Health Policy in the United States; Human Dignity; Justice; Life, Quality of; Long-Term Care; Managed Care; Medicaid; Trust

BIBLIOGRAPHY

Anderlik, Mary R., and Rothstein, Mark A. 2001. "Privacy and Confidentiality of Genetic Information: What Rules for the New Science?" Annual Review of Genetics 35(1): 402–433.

Chalmers, Iain; Hedges, Larry V.; and Cooper, Harris. 2002. "A Brief History of Research Synthesis." Evaluation and the Health Professions 25(1): 12–37.

Dugas, Christine. 2002. "Retirement Crisis Looms as Many Come Up Short." USA Today July 19, p. A. 01.

Fox, Daniel M. 1995. Power and Illness: The Failure and Future ofAmerican Health Policy. Berkeley: University of California Press.

Fox, Daniel M., and Klein, Rudolf. 2004. "Ethics and the Politics of Health Policy: Case Studies of Law and Regulation in the United Kingdom and the United States." In The CambridgeHistory of Medical Ethics, ed. R. Baker and L. McCullough. Cambridge, Eng.: Cambridge University Press.

Harwood, Rowan H., and Sayer, Avan Aihie Sayer. 2002. Current and Future Long-Term Care Needs. Geneva: World Health Organization.

Institute for the Future. 2003. Health and Health Care 2010: TheForecast, The Challenge, 2nd edition, p. 260. San Francisco: Jossey-Bass.

Lunney, June R.; Lynn, Joanne; and Hogan, Christopher. 2002. "Profiles of Older Medicare Decendents." Journal of the American Geriatric Society. 50(6): 1108–1112.

Lynn, Joanne. 1997. "An 88-year-old Woman Facing the End of Life." Journal of American Medical Association 277(20): 1633–1640.

USA Today. 2002. "Genetic Tests Outpace Efforts to Safeguard People's Data" (editorial). August 20, p. A.10.

INTERNET RESOURCES

Aetna, Inc. 2002. "Aetna Recommends Guidelines for Access to Genetic Testing, " press release of June 17. Available from <www.aetna.com/news/2002/pr_20020617.htm>.

Ames, Margaret. Geriatric Services of America. 2002. "Respiratory Disease—The Real Facts." Available from <http://www.geriatricservices.com/Dr%20Margaret/emailcold.asp? name=test2%20test2>.

Bethell, Christina; Lansky, David; and Fiorillo, John. Foundation for Accountability (FACCT) and Robert Wood Johnson Foundation. 2002. "A Portrait of the Chronically Ill in America, 2001." Available from <www.rwjf.org/publications/publicationsPdfs/report_chronic_illness.pdf>, p. 2.

Centers for Medicare and Medicaid Services. 2002. "Program of All-Inclusive Care for the Elderly (PACE) History." Available from <cms.hhs.gov/pace/pacegen.asp>.

Centers for Medicare and Medicaid Services. 2003. "Home and Community-Based Services 1915(c) Waivers." Available from <cms.hhs.gov/medicaid/1915c/default.asp>.

Employee Benefit Research Institute (EBRI) Education and Research Fund and Milbank Memorial Fund. 2002. "Kansas Future Retirement Income Assessment Project: Third Draft." Available from <www.ebri.org/pdfs/kansas.pdf>.

Fred Friendly Seminars, Inc. 2001a. "Directory of Chronic Illnesses." Available from <www.pbs.org/fredfriendly/whocares/awareness/directory.html>.

Fred Friendly Seminars, Inc. 2001b. "What is Chronic Illness?" Available from <www.pbs.org/fredfriendly/whocares/awareness/what_is.html>.

Human Genetics Commission. 2001. "The Use of Genetic Information in Insurance: Interim Recommendations of the Human Genetics Commission." Available from <http://www.hgc. gov.uk/business_publications_statement_01may.htm>.

Partnership for Solutions. 2001. "Rapid Growth Expected in Number of Americans Who Have Chronic Conditions." Available from <www.partnershipforsolutions.org/statistics/prevalence.cfm>.

Partnership for Solutions. 2002a. "Chronic Conditions: Making the Case for Ongoing Care." Available from <www.partnershipforsolutions.org/DMS/files/chronicbook2002.pdf>.

Partnership for Solutions. 2002b. "Multiple Chronic Conditions: Complications in Care and Treatment." Available from <www.partnershipforsolutions.org/DMS/files/2002/multiplecoitions.pdf>.

Summer, Laura. 1999. "Chronic Conditions: A Challenge for the 21st Century." National Academy on an Aging Society. Available from <www.agingsociety.org/agingsociety/pdf/chronic.pdf>, p. 2.

U.S. Department of Health and Human Services, Administration on Aging. 2000. "The Future Is Aging." Available from <www.aoa.dhhs.gov/May2000/FactSheets/r3%20-%20life%20course.pdf>.