NCCS Briefing Paper on Quality Cancer Care

The National Coalition for Cancer Survivorship (NCCS) recentlysurveyed health providers, government officials, professionaland advocacy organizations, scientists, and others regarding acritical issue facing this nation's 8 million cancer survivors:quality cancer care. The responses were illuminating as they portrayeda system in flux. The United States is moving away from a healthcare system where fee for service insurance plans predominateto one where market-based alternatives are quickly gaining favoramong employers, consumers, and other purchasers of health carecoverage. What this fundamental transition will mean for survivorsand individuals with other serious or life-threatening diseasesand the people who care for them is an open question with importantpublic policy implications.

This draft briefing paper summarizes the opinions of experts froma diversity of disciplines regarding the strengths and weaknessesof both fee for service and market-based approaches and the particularneeds of cancer survivors. We also suggest some questions thatmust be addressed if we are to develop meaningful measurementsof cancer care.

Fee For Service: Strengths

Not surprisingly, the respondents cited choice--of providers,treatments, and institutions--as the overwhelming strength offee for service plans. The experts agreed that the initial selectionof, and resulting satisfaction with, a particular health careprovider can be influenced by factors as distinct as convenience,cost, expertise, and personal compatibility. Freedom of choicewas seen as offering both strictly medical advantages--for example,the ability to seek specialists in cases of rare conditions--aswell as psychological benefits, including the encouragement ofstrong doctor/patient relationships. As stated by one survivor:

In the traditional fee-for-service system, the patient/survivorhas choice; from this stems the opportunity for controland confidence. If the opportunity is seized, the patientmotivates the physician and the medical team to their best performances,andthrough them, the delivery system to its best performance. Withcontrol, 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 newphysician.

In addition to choice, the availability of state of the art cancertreatment was regarded as another significant strong point ofthe fee for service approach. Although fee for service plans maynot have paid directly for research treatments, generous reimbursementfor ancillary costs often supported major clinical research programs.This led to a network of oncologists and specialized centers conductingclinical 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 utilizingthese advancements, as they can individualize treatment plansin order to care for patients as they deem best. Flexibility,discretion, and creativity were terms associated with fee forservice. As one expert stated: "[T]he fee for service systemhas many faults but does result in physicians being advocatesfor therapy and for patients. Alternative managed care systemsmay make physicians the rationer[s] of health care rather thanthe advocate[s] of health care."

Fee For Service: Drawbacks

As recognized in the foregoing statement, the fee for serviceapproach does have significant faults. On a macro level, respondentspointed to financial incentives which can encourage over- utilizationof services offering little or no improvement in either lengthor quality of life. The resulting inefficiencies have contributedto escalating health care costs that many regard as impossibleto sustain in the future. Examples of situations where betteruse of our resources could be achieved included:

• continuing aggressive care when support or palliative carewould be more appropriate;
• "shopping" for third or fourth opinions; promotingexpensive new care to patients before the efficacy of the particularprocedure or treatment is clearly established through qualifiedclinical trials; allowing "me too" programs and servicesto proliferate in a manner that is not efficient or cost-effectivegiven geographic location, population, incidence, etc.; and
• promoting clinical trials which are redundant or otherwisenot designed to yield useful new data.

A second fundamental problem of the current system is reflectedin the more than 37 million Americans who do not have health insurance:"[E]ven very high expenditures are ultimately not enoughto provide for everyone, so we now have a class system for healthcare (people with insurance versus the growing uninsured population).This is ethically untenable, and eventually will be politicallyuntenable in our society." With the fee for service systemtied to employment, employees of small businesses, the unemployed,low-income individuals who do not qualify for Medicaid, undocumentedworkers, and other entire classes of people do not have readyaccess to the health care delivery system. Although respondentsnoted that most of these people can obtain health care, it isoften 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 otheroften duplicative records that exact huge administrative and psychologicalcosts to process. Other weaknesses of the fee for service structurethat directly impact survivors' quality of care include: lackof coordinated services; failure to reimburse for preventive measures,supportive services, and long-term follow-up; and the absenceof good quality control measures.

In addition, restrictive insurance practices--preexisting conditionclauses, life-time caps, and health-based eligibility standards--oftenact to deny people coverage when they need it the most. Cancersurvivors in particular often experience difficulty in receivingstate of the art care because many insurers refuse to cover thepatient care costs associated with -clinical trials and off-labelor other "investigational" therapies.

Perhaps the crux of the problem with the fee for service systemis that too many people do not have information about these limitationsor comprehend their implications until it is too late:

Beneficiaries may voluntarily choose reduced benefits in orderto save monthly premium costs (goal: to maximize beneficiaries'short term gain). However, it is important to note that employersgenerally establish the health insurance options, associated premiumsand cafeteria-style variables among which employees may select,and that beneficiaries may not be fully aware of the risk theyrun in voluntarily choosing less expensive health insurance. Finally,it is critical to note that health insurance choices by healthyindividuals may differ from choices made by those afflicted byserious disease, but one may not select a "better" insuranceplan once being diagnosed. Buying health insurance is like gamblingin that respect.

Market-Based Approaches: Concerns

Clearly, everyone agrees that the fee for service system has fundamentalflaws; 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-basedhealth care are troubling to the surveyed experts. Most of theseconcerns focused on our ability to remain in the forefront ofcancer research and care and to continue to encourage technologicalinnovation if decisions are driven primarily by short-term financialconsiderations.

A hallmark of most market-based plans is the gatekeeping roleplayed by primary care physicians who are responsible for coordinatingindividuals'care and referring them to specialists. The surveyedexperts were unanimous in stating that survivors must have continuedtimely access to specialists, and that they should not face highout-of-pocket expenses if they are forced to go outside of theirplan to be treated by the needed specialist. Other important characteristicswhich 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 oncologistsshould be the primary manager of care for survivors with activemalignancies and those in the early stages of remission. To supporttheir position, they cited several factors:

• the complexities of treating cancer, a term which includesmore 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 theimportance of early detection and treatment.

The respondents also acknowledged, however, that in many caseslonger-term survivors can be followed successfully by a primarycare physician, especially if (1) they have an annual evaluationby a specialist, and (2) there was ongoing consultation betweenthe primary care physician and the oncologist. Education of primarycare physicians, the development of guidelines, and more emphasison extended follow-up were regarded as components that could improvesurvivors' quality of care under these circumstances.

In addition to continued access to specialists, respondents alsowere troubled about the commitment of market based plans to supportthe cancer research system currently in place. They feared thatwe will be forced to seek increases in public funding for basicand clinical research at a time when neither the public nor Congresswill support such expenditures. In fact, many felt that all healthcare plans, whether fee for service or market-based, should berequired to cover clinical trials meeting specific standards.

Indeed, a refrain throughout the various opinions was that wecannot sacrifice long-term quality care for short-term cost savings.Instead, there was widespread support for a more balanced approachwhich attempts to define cancer care which is both cost-effectiveand of optimum quality:

• Reasonable guidelines and clinical care pathways must be developedto standardize care and to help eliminate unnecessary, and oftencostly, services and procedures.
• Outcomes data need to be collected so that valid quality measurementsare available to guide providers' treatment recommendations.
• Survivors must have access to information like practice patternsand outcomes data in a concise and easily understood form so thatthey are able to reach truly informed decisions.

Measuring Quality Cancer Care: Special Considerations

Although rudimentary attempts at assessing quality cancer careare underway, NCCS believes that several fundamental issues mustbe reflected in standards and guidelines if we are to design reliablemeasurements of care:

• Unlike many common diseases, "cancer" is reallymany different diseases, some of which are not encountered frequentlyby any one provider.
• Cancer, particularly in the acute stage, often requires specializedcare.
• Standards need to be developed that measure care across thespectrum of survivorship, from prevention and screening mechanismsthrough early diagnosis and treatment to long-term follow-up andpalliative care.
• Variations in such important factors as geographic settingand socioeconomic status can dramatically impact the quality ofavailable care.
• Cancer is unique in that there sometimes is little effectivecare available, or that which exists is of an investigationalnature.
• Occasionally, state of the art cancer treatment offers onlysmall benefits over established treatments, yet may be more costly.
• For cancer survivors, improvements in quality of life aresignificant end points that must be considered in addition toincreased longevity.

NCCS will discuss these and related issues with other interestedmembers of the cancer community so that we can begin to buildconsensus about the definition and measurement of quality cancercare in the year 2000. We invite your comments and opinions aboutthese critical topics.

Insurers are becoming health plans and providers; providersare becoming insurers; suppliers are becoming "disease statemanagers"; hospitals are going out of business; health caredelivery mechanisms are "moving " to the Internet; andanyone is in the business of writing clinical pathways (aka practiceguidelines). The rules of the game are changing faster than managementstructures and information systems can support, payers can understandor track, and regulators and legislators can control. Wall Streetand venture capitalists are making a killing. Development of cancercare quality guidelines will occur in this very difficult "free-for-all"environment.

The viewpoints reflected in the survey responses are the personalopinions of the 88 contributors and not necessarily those of theorganizations or institutes with which they are affiliated. Forfurther information, write or call: National Coalition for CancerSurvivorship, 1010 Wayne Avenue, Silver Spring, Maryland 20910(telephone: 301-650-8868).