The National Coalition for Cancer Survivorship (NCCS) recently surveyed health providers, government officials, professional and advocacy organizations, scientists, and others regarding a critical issue facing this nation's 8 million cancer survivors: quality cancer care. The responses were illuminating as they portrayed a system in flux. The United States is moving away from a health care system where fee for service insurance plans predominate to one where market-based alternatives are quickly gaining favor among employers, consumers, and other purchasers of health care coverage. What this fundamental transition will mean for survivors and individuals with other serious or life-threatening diseases and the people who care for them is an open question with important public policy implications.
This draft briefing paper summarizes the opinions of experts from a diversity of disciplines regarding the strengths and weaknesses of both fee for service and market-based approaches and the particular needs of cancer survivors. We also suggest some questions that must be addressed if we are to develop meaningful measurements of cancer care.
Fee For Service: Strengths
Not surprisingly, the respondents cited choice--of providers, treatments, and institutions--as the overwhelming strength of fee for service plans. The experts agreed that the initial selection of, and resulting satisfaction with, a particular health care provider can be influenced by factors as distinct as convenience, cost, expertise, and personal compatibility. Freedom of choice was seen as offering both strictly medical advantages--for example, the ability to seek specialists in cases of rare conditions--as well as psychological benefits, including the encouragement of strong doctor/patient relationships. As stated by one survivor:
In the traditional fee-for-service system, the patient/survivor has choice; from this stems the opportunity for control and confidence. If the opportunity is seized, the patient motivates the physician and the medical team to their best performances,and through them, the delivery system to its best performance. With control, the patient can insist on explanations and alternatives. This leads to confidence. Lacking either control or confidence, the patient in this system still has the choice of finding a new physician.
In addition to choice, the availability of state of the art cancer treatment was regarded as another significant strong point of the fee for service approach. Although fee for service plans may not have paid directly for research treatments, generous reimbursement for ancillary costs often supported major clinical research programs. This led to a network of oncologists and specialized centers conducting clinical trials involving promising new therapies. As a result, the United States is a leader in innovative diagnostic, imaging, and therapeutic technology.
Fee for service also allows providers maximum flexibility in utilizing these advancements, as they can individualize treatment plans in order to care for patients as they deem best. Flexibility, discretion, and creativity were terms associated with fee for service. As one expert stated: "[T]he fee for service system has many faults but does result in physicians being advocates for therapy and for patients. Alternative managed care systems may make physicians the rationer[s] of health care rather than the advocate[s] of health care."
Fee For Service: Drawbacks
As recognized in the foregoing statement, the fee for service approach does have significant faults. On a macro level, respondents pointed to financial incentives which can encourage over- utilization of services offering little or no improvement in either length or quality of life. The resulting inefficiencies have contributed to escalating health care costs that many regard as impossible to sustain in the future. Examples of situations where better use of our resources could be achieved included:
- continuing aggressive care when support or palliative care would be more appropriate;
- "shopping" for third or fourth opinions; promoting expensive new care to patients before the efficacy of the particular procedure or treatment is clearly established through qualified clinical trials; allowing "me too" programs and services to proliferate in a manner that is not efficient or cost-effective given geographic location, population, incidence, etc.; and
- promoting clinical trials which are redundant or otherwise not designed to yield useful new data.
A second fundamental problem of the current system is reflected in the more than 37 million Americans who do not have health insurance: "[E]ven very high expenditures are ultimately not enough to provide for everyone, so we now have a class system for health care (people with insurance versus the growing uninsured population). This is ethically untenable, and eventually will be politically untenable in our society." With the fee for service system tied to employment, employees of small businesses, the unemployed, low-income individuals who do not qualify for Medicaid, undocumented workers, and other entire classes of people do not have ready access to the health care delivery system. Although respondents noted that most of these people can obtain health care, it is often fragmented and rendered at great expense.
Once in the system, all participants--survivors, health care providers, and payers--face a labyrinth of codes, forms, bills, and other often duplicative records that exact huge administrative and psychological costs to process. Other weaknesses of the fee for service structure that directly impact survivors' quality of care include: lack of coordinated services; failure to reimburse for preventive measures, supportive services, and long-term follow-up; and the absence of good quality control measures.
In addition, restrictive insurance practices--preexisting condition clauses, life-time caps, and health-based eligibility standards--often act to deny people coverage when they need it the most. Cancer survivors in particular often experience difficulty in receiving state of the art care because many insurers refuse to cover the patient care costs associated with -clinical trials and off-label or other "investigational" therapies.
Perhaps the crux of the problem with the fee for service system is that too many people do not have information about these limitations or comprehend their implications until it is too late:
Beneficiaries may voluntarily choose reduced benefits in order to save monthly premium costs (goal: to maximize beneficiaries' short term gain). However, it is important to note that employers generally establish the health insurance options, associated premiums and cafeteria-style variables among which employees may select, and that beneficiaries may not be fully aware of the risk they run in voluntarily choosing less expensive health insurance. Finally, it is critical to note that health insurance choices by healthy individuals may differ from choices made by those afflicted by serious disease, but one may not select a "better" insurance plan once being diagnosed. Buying health insurance is like gambling in that respect.
Market-Based Approaches: Concerns
Clearly, everyone agrees that the fee for service system has fundamental flaws; market-based plans may well address many of these shortcomings, especially with regard to prevention and early detection. However, it also is apparent that some aspects of the transition to market-based health care are troubling to the surveyed experts. Most of these concerns focused on our ability to remain in the forefront of cancer research and care and to continue to encourage technological innovation if decisions are driven primarily by short-term financial considerations.
A hallmark of most market-based plans is the gatekeeping role played by primary care physicians who are responsible for coordinating individuals'care and referring them to specialists. The surveyed experts were unanimous in stating that survivors must have continued timely access to specialists, and that they should not face high out-of-pocket expenses if they are forced to go outside of their plan to be treated by the needed specialist. Other important characteristics which the experts wanted to see in market-based plans were:
- expeditious and fair appeal mechanisms;
- inclusion of credentialed specialists in networks;
- the ready availability of second opinions; and
- coordinated care across the spectrum of survivorship.
When specifically asked, most respondents felt that oncologists should be the primary manager of care for survivors with active malignancies and those in the early stages of remission. To support their position, they cited several factors:
- the complexities of treating cancer, a term which includes more than 100 different conditions;
- oncologists' specific knowledge of pain management and hospice, long-term and late effects, and rehabilitative services; and
- survivors' increased risk for second malignancies and the importance of early detection and treatment.
The respondents also acknowledged, however, that in many cases longer-term survivors can be followed successfully by a primary care physician, especially if (1) they have an annual evaluation by a specialist, and (2) there was ongoing consultation between the primary care physician and the oncologist. Education of primary care physicians, the development of guidelines, and more emphasis on extended follow-up were regarded as components that could improve survivors' quality of care under these circumstances.
In addition to continued access to specialists, respondents also were troubled about the commitment of market based plans to support the cancer research system currently in place. They feared that we will be forced to seek increases in public funding for basic and clinical research at a time when neither the public nor Congress will support such expenditures. In fact, many felt that all health care plans, whether fee for service or market-based, should be required to cover clinical trials meeting specific standards.
Indeed, a refrain throughout the various opinions was that we cannot sacrifice long-term quality care for short-term cost savings. Instead, there was widespread support for a more balanced approach which attempts to define cancer care which is both cost-effective and of optimum quality:
- Reasonable guidelines and clinical care pathways must be developed to standardize care and to help eliminate unnecessary, and often costly, services and procedures.
- Outcomes data need to be collected so that valid quality measurements are available to guide providers' treatment recommendations.
- Survivors must have access to information like practice patterns and outcomes data in a concise and easily understood form so that they are able to reach truly informed decisions.
Measuring Quality Cancer Care: Special Considerations
Although rudimentary attempts at assessing quality cancer care are underway, NCCS believes that several fundamental issues must be reflected in standards and guidelines if we are to design reliable measurements of care:
- Unlike many common diseases, "cancer" is really many different diseases, some of which are not encountered frequently by any one provider.
- Cancer, particularly in the acute stage, often requires specialized care.
- Standards need to be developed that measure care across the spectrum of survivorship, from prevention and screening mechanisms through early diagnosis and treatment to long-term follow-up and palliative care.
- Variations in such important factors as geographic setting and socioeconomic status can dramatically impact the quality of available care.
- Cancer is unique in that there sometimes is little effective care available, or that which exists is of an investigational nature.
- Occasionally, state of the art cancer treatment offers only small benefits over established treatments, yet may be more costly.
- For cancer survivors, improvements in quality of life are significant end points that must be considered in addition to increased longevity.
NCCS will discuss these and related issues with other interested members of the cancer community so that we can begin to build consensus about the definition and measurement of quality cancer care in the year 2000. We invite your comments and opinions about these critical topics.
Insurers are becoming health plans and providers; providers are becoming insurers; suppliers are becoming "disease state managers"; hospitals are going out of business; health care delivery mechanisms are "moving " to the Internet; and anyone is in the business of writing clinical pathways (aka practice guidelines). The rules of the game are changing faster than management structures and information systems can support, payers can understand or track, and regulators and legislators can control. Wall Street and venture capitalists are making a killing. Development of cancer care quality guidelines will occur in this very difficult "free-for-all" environment.
The viewpoints reflected in the survey responses are the personal opinions of the 88 contributors and not necessarily those of the organizations or institutes with which they are affiliated. For further information, write or call: National Coalition for Cancer Survivorship, 1010 Wayne Avenue, Silver Spring, Maryland 20910 (telephone: 301-650-8868).