Health Care for the American Family in the New Century

Abstract

The American family must confront an array of health challenges, both old and new, on the dawn of the 21st century. Yet health care plans that should provide education, services, and guidance often seem to be watching the bottom line more closely than they are monitoring their patients welfare. Families are left to rely on their own resources, without support in situations such as the home health care of a family member. New information technology and approaches to clinical decision making can empower families with health care resources, as well as assist their clinicians in providing high quality relationship-based care.

Key Words: family health, managed care, primary care, health care access

1. April L. Allison, M.A., M.P.H., is writer and editor for the Department of Family Practice, Michigan State University, E. Lansing, MI 48824.

2. William C. Wadland, M.D., M.S., is Professor and Chair, Department of Family Practice, Michigan State University, E. Lansing, MI 48824.

The Family as the 21st Century Begins

When we consider family health in the 21st century, we must ask what a "family" is and who has responsibility for ensuring the health of its members. The image of family as a married man and woman with two or three children is not statistically normative even though some still may consider it to be an ideal family form. Single parents with their children and non-married couples also create families. Grandparents provide a significant amount of guardianship care to children, and same-sex couples co-parent both children from previous relationships and those that have been born within their current relationship. We might then define the family as a concerned network of people who provide support for one another both emotionally and physically.

Alongside this variety of family forms and newly emerging roles and patterns of responsibility is an even more complex set of players, each of which has oversight over some aspect of the family's health care. Schools require up-to-date childhood immunizations as a prerequisite for enrollment and sometimes offer limited school nursing services (occasionally including contraceptive counseling for teenage students). The public health system offers an oftenshifting and inadequately funded set of program initiatives aimed at improving health for families. Third-party payers, whether government-sponsored such as Medicaid or privately-financed managed care organizations, limit or direct the health care choices made on behalf of a family member. Finally, the legal system stands in the wings ready to apply sanctions to those families whose health care decisions do not meet standards considered normative.

To some extent, the health care needs of family members are predictable over time and according to each member's age, gender, and developmental stage. Children need access to preventive and behavioral health programs, while their parents require support services. Women have a continuing need for early prenatal care, while special health needs for men focus more on accident prevention, substance use and abuse, and increased recognition of the value of health screening.

In addition to these general themes, we also confront a changing profile of challenges to family health at the beginning of this century. We are experiencing a re-emergence of infectious diseases that were thought to be almost entirely eradicated—such as tuberculosis, diphtheria, and hepatitis—as resistance to antibiotics develops and the ease of international travel facilitates the spread of pathogens. Conditions such as asthma are also on the rise among children, and HIV/AIDS continues to take a toll, especially among groups with poor access to quality medical care. A high threshold for violence portrayed in the media and ready access to guns has facilitated a climate of casual violence among youth. New technologies such as breakthroughs in genetic screening and therapy can be viewed either as a dangerous invasion of privacy and unnatural manipulation of human biology, or as new promise for families beset by genetically determined health problems. Those who have little or no family or group support, such as elderly single people and the homeless, are at greater risk for health problems than are those who can rely on social and familial resources. Finally, the United States population is aging, and the health issues of aging will become increasingly prominent in the coming years.

The Changing Nature of Medicine

The past century has seen an explosion of medical knowledge, as well as a profound reorganization of health care delivery and the medical profession. Looking back over the last century, the major milestones in medical knowledge and technology have brought benefits of new information, pharmaceuticals, and technology, and also have exposed the harm caused by some generally accepted practices in medical care. The efficacy of penicillin was so apparent it did not require a randomized trial, and the report of its discovery (Abraham, 1941) truly began a revolution in modern medicine and therapeutics. Other milestones such as diagnostic imaging, organ transplants, immunizations, the discovery of DNA, and genetic mapping with molecular pharmacotherapy have provided tremendous benefits for modern medicine and optimistic hopes for physicians and patients (New England Journal of Medicine, 2000).

This expansion of medical knowledge has also revealed that some commonly accepted therapies were more detrimental than helpful. The randomized clinical trial has been a useful tool in weighing benefits over harm. Some medical practices that have been shown by randomized trials to have no efficacy (indeed in some cases to have true detrimental effects), include the prophylactic use of lidocaine during acute myocardial infarction (Teo, 1993), routine episiotomy in normal vaginal delivery (Klein et al., 1993), and extracranial bypass for stroke prevention (EC/IC Bypass Study Group, 1985).

Despite tremendous advances in modern medicine and technology and the fact that we spend more on health care than does any other nation in the world, there remain limitations in access to medical care in the United States. This is somewhat paradoxical. As one example, the United States has some of the most advanced technology in neonatology and a greater number of neonatal intensive care units per capita than any other modern country. Yet, we have some of the poorest outcomes in neonatal mortality rates for high risk populations. The paradox of poor population outcomes in spite of superb technology can be explained by limited access to care among significant populations and by financial incentives that promote high tech approaches over low tech prevention programs. For example, high payments are offered for neonatal intensive care vs. low payments for prenatal care.

Limited access is often due to financial constraints, and much attention currently focuses on extension of insurance coverage as a solution to the financial inequities that prevent full access to quality health care. The number of people without insurance reached 43.4 million in 1997, comprising 16.1 percent of the population (Iglehart, 1999) and a serious illness or injury requiring hospitalization would devastate the finances of the vast majority of working or unemployed families. (Kogan et al, 1995)

However, non-financial factors also restrict access to care. These may include limited referral rates due to identification bias (women with chest pain have less likelihood of a full cardiovascular workup), or a patient's attitudes, values, or concerns mitigate against seeking care. This can include concerns that the health care system is biased and that providers may provide inadequate or even dangerous care to people of color (Holzman, 1999; McGary, 1999).

A third element can also restrict access to health care services. Inadequate institutional support for utilization of services sometimes occurs even when appropriate technology, insurance coverage, and consumer involvement are all present. This would include such situations as a managed care health plan restricting access to diagnostic MRI even though it may be clinically useful (Flanagan, 1997).

A fourth element restricting service is a sense of entitlement by those who could pay for health care out of pocket or from savings. Such individuals will delay care until an emergency occurs, rather than make a more modest outlay for preventive services.

The Rationing of Health Care

As medical technology becomes more elaborate and treatment becomes more expensive, concerns about health care rationing come to the forefront. In the United States, we do not want to believe that we ration health care. In the "land of opportunity," everyone should be able to receive health care. lf the economy continues to grow rapidly with low unemployment rates, in theory most citizens should be able to obtain jobs that offer health care coverage.

However, de facto rationing of health care does exist in the United States (Reinhart, 1993; Starr, 1982) for both the insured and the uninsured. Unemployment may be low, but employers are hiring part-time or temporary employees to avoid health benefit costs, creating increasing numbers of uninsured persons. In the past, the cost of providing health care for those with inadequate coverage or no coverage was shifted by hospitals and other elements of the health system to other persons who did have insurance coverage. Cost shifting was a routine way to balance the budget. Of course, that process helped to drive up the cost of care for persons with insurance coverage. And while the uninsured are denied adequate care, those who are enrolled in a health plan also sometimes feel that they are being denied necessary care or referral to specialists (Grumbach et al., 1999).

As a society, we must resolve whether health care is a right or a privilege. Canada and socially oriented democracies in Europe (Reinhart, 1993) have come to terms with this dilemma. American political leaders and populace will have to resolve this clash of philosophies if we are to solve the problems of poor access to health care in the near future. Since the defeat of the Clinton administration's proposed comprehensive health care reform in 1994, only the most incremental advances have even been attempted. Blumenthal (1999:1917) suggests that for many Americans, "though the current problems with access to care may be perceived as a moral crisis, they are not sufficiently severe to be seen as a political crisis."

There is less discussion about what responsibilities accompany rights, such as a commitment to pay for a reasonable level of care for all citizens and a personal responsibility to maintain one's own health and that of other family members. As a society, we also need to understand that large populations that receive inadequate care may create endemic subgroups that put the wealthier part of the population at risk for such conditions as tuberculosis or a re-emergence of polio.

Recent Trends in Health Care Financing

Government involvement in social insurance began with the New Deal, and private prepaid health maintenance organizations such as Kaiser began to attract notice in the late 1940s, with considerable opposition from private practitioners (Starr, 1982). Health care costs were rising under traditional insurance and fee-for-service billing, and concerns about cost control and expansion of access were surfacing. Due to the seeming unlimited demand for services and technology, the cost of health care grew out of control when compared to other social costs.

By the late 1980s, the health maintenance organization (and the broader concept of managed care) seemed to promise the possibility of (a) an emphasis optimizing health through preventive care, (b) a reduction in overutilization of expensive services and, hence, of the nation's health care costs, and (c) control over, and standardization of, the widely varying quality of care offered by traditional fee-for-service medical providers.

The major impetus in the development of a managed care system was undoubtedly the social imperative to control runaway health care costs in the United States. Managed care organizations developed out of a simultaneous need to develop economies of scale and a perception that health care cost increases could be controlled by the introduction of a rational health care delivery system that would strive to curb overutilization of services without compromising health outcomes for consumers.

Bodenheimer & Grumbach (1998:1) define managed care quite simply: "organizations that foot the bill for a patient's care have taken on the role of managing that patient's care. Payers and insurers no longer simply write checks; they become involved in decisions about how much care a patient receives, of what kind, and by which providers." This is where the simplicity ends.

There are many organizational forms encompassed by the term "managed care," and a wide variety of services offered and standards of care. One classification (Bischof & Nash, 1996) divides managed care plans into health maintenance organizations (HMOs), preferred provider organizations (PPOs), and point-of-service (POS) plans. The internal organization of managed care plans and the services they offer are both evolving rapidly; subsequently, types of health plans often converge or overlap.

There are many variations within each of the three types of plan, and a managed care organization may offer more than one plan option to corporate subscribers. While individual enrollment into health maintenance plans is possible, the majority of enrollments are through an employment benefit package. Thus, the extensiveness of a family's health care plan will often depend on negotiations among the employer, the managed care organization, and possibly an employee bargaining group. As these entities maneuver to negotiate plans that will satisfy all three interest groups, families who depend on employer-subsidized health care may find their coverage, as well as their employee contribution, changing from year to year.

Impact of Managed Care

Much media attention has focused on the shortcomings of managed care organizations, while sometimes overlooking more positive elements. On a societal level, there has been a definite slowing of the rate of increase of health care expenses (Iglehart, 1999). It is less certain whether this benefit has been passed on to the ultimate consumer of health care and whether the cost savings can be maintained over time.

There have been fears expressed that cost containment through managed care could lead to poor health outcomes. However, the golden era of health care when all physicians were altruistic and well informed about care options may never have existed (Starr, 1982). According to Gold (1999:26), most existing research indicates that managed care and FFS (fee for service) settings provide care of roughly similar quality, and that improvement is possible in both. A managed care system sets a bottom line for quality of care which all network providers are expected to meet, and ensures accountability by individual providers. Managed care introduces an element of predictability and coordination into a formerly very individualistic system; by promoting team care, screening and disease management protocols can extend evidence based care on a more uniform basis and to a wider number of patients.

Even so, such a dramatic restructuring of a profession that prides itself on its autonomy and social concern can be wrenching, and health care providers have experienced several limitations to managed care systems. Physicians' morale can suffer (Gold, 1999; Grumbach, 1999; Simon, Dranove, & White 1998) when (a) they find themselves in a "gatekeeper" role of seeking low-cost alternatives to services they provided more liberally under a fee-for-service billing system; (b) greater numbers of physicians are becoming salaried employees and others are under contracts that put constraints on the use of their individual professional judgment; (c) they see a multiplication of paperwork within their offices; (d) protocols and regulations vary among health care plans, and it is common for a physician to have contracts with more than one plan; (e) some groups of physicians have experienced a relative loss of income; and (f) the overall reduction in professional autonomy has taken the satisfaction out of medical practice for some physicians. Kassirer (1995:50) sums up one concern of many physicians by saying, "the incentive to remain employed is so strong that many physicians in a capitated system may not provide all the services they should, may not always be the patient's advocate, and may be reluctant to challenge the rules governing which services are appropriate."

There also have been charges of racism and other biases in the award and continuation of health care provider contracts (Lavizzo-Mourey et al., 1996), and a concern that health plans will enhance their bottom line by selectively enrolling members who have a demographic probability of better-than-average health and, hence, reduced expenses to the health plan. This could reduce access to care for the poor, the elderly, and those whose health is already compromised.

Impact on Family Caregivers

Families, the end users (and ultimately the funders) of a health plan, also find that the shift to managed care can create concerns. This can range from anxiety that a medication was prescribed based on cost rather than on efficacy to a concern that a newly retired couple may not be able to move out-of-state because their retirement health care plan is not transportable.

To illustrate just one such impact, the trend toward discouraging overutilization of services means that much patient care formerly provided on an in-patient or institutional basis has now been shifted to outpatient and home care. This necessity to provide home care can cause burdens for both the patient and the family if support systems are lacking (Given & Given, 1996).

A study of the economic value of informal caregiving estimated that the market value of the care provided by unpaid family and friends was $196 billion in 1997; compared to national spending of $32 billion for formal home health care and $83 billion for nursing home care (Arno, Levine, & Memmott, 1999). This did not include an estimate of forgone wages when caregivers reduced or left their employment due to their family responsibilities. Given & Given, (1994) report that among those who provide care for middle-aged cancer patients, women are more likely to give up work roles than are men, and that more than 40 percent of working caregivers had an alteration in their work schedules due to the cancer care they provided. A longitudinal study of employment decisions of daughters or daughters-in-law who were the primary caregiver for a parent showed that most changes in employment, especially the decision to quit or to take a leave of absence, occurred early in the period of caregivng (Pohl, Collins, & Given, 1998).

While home care may be seen as an ideal in terms of patient comfort and intimate continuity of care, it can also be extremely disruptive to family functioning. The family's caregiver becomes responsible for possibly unfamiliar tasks such as ensuring medication compliance, scheduling and arranging transportation for medical visits, managing pain and symptoms, and attempting to maximize the emotional well-being of the patient (Given & Given, 1996). Family roles, communication patterns, social support, and family cohesion can all be affected by the new responsibilities thrust upon the family. The strain of caregiving can actually be a risk factor for ill health or mortality in the caregiver (Schulz & Beach, 1999).

Family members often receive little information on how to monitor patient status, care for equipment, manage symptoms, or when to contact health care providers. "We are asking these family members to provide care that we don't allow nursing students to do until their second or third year of school," said Michigan State University nursing professor Barbara Given (1999:1). While there are some resources available for health care providers who are in a position to assist home caregivers in developing their skills and resources (Kozachik, Given & Given, 1999), support or case management systems are not sufficient relative to the need.

Models of Health Care for a New Century

Concerns about the health care system and its impact on the nation's families focus generally on two areas: (a) control over health care spending as a percent of the family's income and (b) universal access to a defined set of health care services. Providers, payers (including government, employers, and health care plans), and health care consumers embrace a complex and interlocking set of expectations and interests as health care policy is negotiated. As described by Reinhardt (1993:21-22), when patients are sick they "rail, with little chance of success, against the heartless bureaucrats who refuse to finance procedures. On the other hand, when patients are healthy and faced with mounting taxes or insurance premiums.. . patients rail against health care providersi voracious financial appetite and holler for cost controls." Although Reinhardt might sound a bit cynical, this interplay between the desire for expanded access and/or services and the concern about personal costs was illustrated in a 1998 national survey that found 61 percent of respondents would like the next Congress to make a priority of helping uninsured Americans get health insurance; however, less than half were willing to pay more to accomplish the goal. Likewise, 76 percent of sampled voters supported a proposal that would allow patients to sue their health plans for malpractice; but when told that such a proposal might lead to a premium increase, support dropped to 53 percent (Blendon et al, 1999).

Even the American Medical Association seems to have accepted the inevitability of some form of managed care as the predominant vehicle of health care delivery (Dickey & McMenamin, 1999), and societal concerns revolve around how family health can be enhanced within this context of cost controls and utilization reviews. Making the most of this will require initiative on the part of both health care providers and consumers, developing new partnerships with one another aided by a new communications technology that allows unprecedented access to health care information and research.

Training Tomorrow's Clinicians

To ensure the highest quality in medical care, future clinicians will be expected to weigh both the proven benefits and possible harms of a clinical decision. They will need to consider whether there is evidence of benefit; evidence of no benefit or of harm; or insufficient evidence and proceed accordingly.

Tomorrow's clinicians should not only be trained to critique and understand the medical literature (Green, 1999; Geyman, 1998;. Wadland et al., 1999) but will need technological resources to bring the needed information at the point of care (Ebell, 1999). Computerized patient records (Churgin, 1995) linked to information support reminders and evidence-based reviews, predictor rules, and guideline assists are some of the new technologies that can help ensure the highest quality of medical care. These information support systems can be linked to electronic medical record systems that capture significant outputs on entire populations so that both benefits and harms can be detected early. The concurrent information on outcomes can be used to promote continuous improvement in medical care. While integrated information systems may be key to providing responsive clinical care, safeguards must be in place to protect the security and privacy of both individuals and groups.

Family-Driven Care in the New Century

The family in the new century will need to become more self-reliant as health care issues are confronted throughout the life cycle. Health care has the opportunity to become consumerdriven rather than provider-driven. Medical information on the Internet provides rapid and unprecedented access to medical knowledge for both providers and consumers. Consumers who have access to Internet resources can become better informed in specific medical changes than their physician or health care provider. A short listing of some health care information websites may be found following the references for this article.

Family members may identify their health risks on the Internet, plan their personal health care, and research the best way to access support services. Standard recommendations for prenatal care, childhood screening and developmental anticipatory guidance, availability of parent support services, and home care resources can all be found on-line. Provider groups can place their own recommendations on practice websites so that patients can review their standard recommendations for health maintenance care, chronic disease protocols for diabetes, hypertension, or asthma, or list questions that can be answered by electronic mail by office nurses.

Of course, such consumer-initiated family health planning requires convenient access to the Internet, some degree of computer literacy, and the ability to sift through large quantities of data to assess often-competing health care recommendations. Consumers must feel some sense of empowerment, knowing that their input will be valued by providers.

Importance of Personalized, Continuous Health Care

Though the new century brings much opportunity to improve medical decision making both by families and providers of health care, the availability of information actually increases the importance of relationship-centered care (Inui, 1996). It has been demonstrated that men 55 years and older experience more patient satisfaction, shorter hospitalizations, and fewer emergent hospital admissions if they have continuity of outpatient provider care (Wasson et al., 1984). Similar results in pediatric care have been shown with greater satisfaction and compliance to prevention programs with continuity of physician care (Becker, Drachman, & Kirscht, 1974), and greater patient satisfaction was also shown within an HMO setting (Weyrauch, 1996).

End-of-life care requires close coordination and high level communication among providers of care to meet the needs of the dying. In A Partnership for Good Dying, Deborah Fahnestock (1999:615) states; "I and many dying persons would agree that beyond pain control, the three elements we most need are feeling cared about, being respected, and enjoying a sense of continuity, be in relationships or in terms of spiritual awareness."

It is simplistic to think that one personal physician or provider of care will be available and accessible every day for every person with multiple illnesses, but information technology allows us to transmit the continuous "illness story" of family members across a coordinated team of health providers. It will soon be possible for patients to carry a standardized electronic medical history disc with them. This would allow clinicians to spend more time evaluating how the patient feels and has changed over time, rather than focusing on previous documented details of the medical history. Of course, the consumer will need help in determining the quality of information about health care on the Internet and will need to have trusting relationships with clinicians to help them decide which information is most reliable and relevant to their personal health concerns.

Even though the advance in electronic transmission of medical knowledge is widely available to both consumers and clinicians, the knowledge is often presented in highly mathematical language based on probabilities that are difficult to understand. It will be the challenge of medical educators to train clinicians who not only comprehend the language of probability but can communicate and interpret options for consumers. Clinicians, working in teams and with community support groups, must become advanced information communicators. The new language of medical communication must be clear and understandable so that families and consumers can make informed decisions about their own health care (Inui, 1996).

United States Surgeon General David Satcher, M.D., Ph.D., states that the biggest challenge physicians will face in the next 10 years is the demographic shift to an aging population (Family Medicine Management, 2000). Even though information technology may free clinicians to communicate more closely with their patients, medical care will become more complex since the majority of patients will be older, possibly with multiple chronic conditions. The need for highly trained generalist physicians who understand the probabilities of medical evidence, can navigate care through complex systems, and communicate compassionately with patients and their families will be more apparent. Physician training should focus more on the value of patient and familycentered care (Ludmerer, 1999; Brody et al, 2000; Inui, 1996). These physicians will need to facilitate the support of nurses, physician assistants, pharmacists, information managers, specialists/subspecialists, family primary care givers and other members, lay advocates, volunteers, and consumer support groups, all of whom will work more closely together. Facilitation of group dynamics and continuity of care will be fundamental skills for the new generalist physician (Capitol City Consortium, 1998).

While these advances in medical informatics and communication will be important, social support for preventive public health services is vital. Dean of the Harvard School of Public Health Barry Bloom (1999:92) believes that "investing just a minuscule percentage of the trillion dollars we now spend on medical care could result in a dramatic improvement in the wellbeing of our entire citizenry." While over the past couple of years Congress has considered a Patient Bill of Rights that is designed to provide more oversight to HMO operations, Bloom suggests that it would impact only a relatively few individuals compared to his proposed Public Health Bill of Rights that includes six points: (a) the right to information on how to promote health and prevent illness; (b) the right to mother and infant care; (c) the right to childhood immunization; (d) the right to teenage counseling; (e) the right to health screening; and (f) the right to a healthy environment.

Conclusion

Responsibility for improving and safeguarding the health of this country's families as we enter the 21st century can not be left to any one sector or to any one reform effort, but must require attention on several levels. Concerns of equitable access to health care resources and cost containment strategies will require a broader and deeper national commitment than has been evident in recent decades. The role of the market economy in health care, the level of support for public health education and services, and our national commitment to social and economic justice must all be examined within this context.

Second, the medical profession must consider how its particular responsibilities for patient welfare can best be carried out within a health care system that can demoralize and wear down the most idealistic clinician. Young clinicians must be trained in the best evidence-based medicine and learn to access point of care information, but the personal relationship will remain key in assisting patients to optimize their own health and that of their families. Ludmerer (1999:xxv) noted, "There was increasing talk in the 1990s of doctors serving the needs of populations, health care systems, and organizations; surprisingly little was heard from medical educators about the need for doctors to remain their patients' friend, counselor, and advocate."

Third, the family, itself, must take a more active responsibility for promoting health within the family and within the community. The family in the next century will need to work closely together as a dynamic unit to enhance the quality of health. There is considerable data showing that persons who are connected in concerned groups, whether relatives, significant others, or church groups, seem to live longer and healthier lives (Hafen, Karren, Frandsen, & Smith, 1996; House, Landis, & Umberson, 1988).

Finally, it is a social responsibility and in the public interest to support the health needs of the family both with quality medical care and with necessary social support services such as day care for both children and the elderly. Political initiative will be required to move an agenda of health care rights and responsibilities to the forefront of national attention. But the future health care of society will be enhanced by promoting and coordinating community resources and organized medical systems around the medical and social needs of the modern family.

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Health Care Information Websites

http://www.aafp.org/medguide/

http://www.DrKoop.com

National Institutes of Health: http://www.nih.gov

Internet Grateful Med (Medline): http://igm.nlm.nih.gov/

http://www.thriveonline.com

http://www.allhealth.com

http://www.intelihealth.com

Mayo Health O@sis: http://www.mayohealth.org

http://www.mediconsult.com

http://www.onhealth.com